American Health Information Community

Consumer Empowerment Workgroup Meeting

PHR Hearing

July 27, 2006

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**[\>\> NANCY DAVENPORT-ENNIS:]{.underline}**

I would like to welcome all of the members of the Consumer Working Group
to this session this morning. Thank you for your travel and your
attendance and participation today.

Likewise, we would like to extend greetings and welcome to all of you
who are present with us here in Washington, as well as those who may be
joining us by teleconference for this particular meeting.

I\'d like to recognize at this point Kelly Cronin, who is a staff member
working with the AHIC committee and with the Consumer Empowerment
Working Group, for several comments. Kelly?

**[\>\> KELLY CRONIN:]{.underline}**

Thank you, Nancy. I just wanted to point out that we had both published
in the Federal Register and had sent out to our listserv guidelines for
the written and oral testimony for today, and we have a series of
questions that we posed in this announcement that stem from about 5
months of deliberations that the Consumer Empowerment Workgroup had over
the last 6 or more months. And we actually presented most of these
questions to the American Health Information Community on May 16, and
there wasn\'t a lot of time during that meeting to get definitive
feedback on those questions. And we thought it really provided a good
framework for the testimony and discussion today, since we feel that
these are some of the pressing issues that are facing the Workgroup as
we move forward to figure out how we\'re going to be making
recommendations that will encourage the widespread adoption of a
longitudinal, affordable, interoperable and usable or user-friendly
personal health record.

So I just wanted to point out that as we go through today, if the
Workgroup members, I think the Co-chairs are already mindful of these
questions and these issues, but if also the testifiers can keep in mind
that we\'re really trying to focus on these set of issues. Of course we
welcome any input that you have to give us, but given the very ambitious
agenda we have today and all the topics we have to cover, we\'re hoping
that we can stay relatively focused on the issues that we want to really
try to dive deeper into.

I also wanted to introduce our new Co-chair, Dr. Rose Marie Robertson.
She\'s a professor of medicine at Vanderbilt, and she\'s also the chief
science officer at the American Heart Association. She\'s been a
long-term patient advocate. I was actually on a panel with her about 2
years ago on personal health records and had the opportunity to
introduce her back then, was very impressed with everything she had to
say and all her insights in this area. She was past president of the
American Heart Association as well, so I think we\'re really fortunate
to have her as a leader of this group, along with Nancy, and I\'d just
like to turn it over to her to make some opening remarks.

**[\>\> ROSE MARIE ROBERTSON:]{.underline}**

I thank you for those comments, Kelly, and I think the questions that
you do have in your packet are a wonderful starting place for the
discussions that we\'re going to have today.

As I look around the panel I can see a number of names that are
appearing, that appear to be male names, and we have female counterparts
that are sitting in those seats. And so I would like to begin the
session today by going to Robert Kolodner and having his representative
introduce herself, as we go around the table, so that everyone here will
know who is present. Thank you.

**[\>\> THERESA HANCOCK:]{.underline}**

I\'m Theresa Hancock, and I\'m from the program management office of
MyHealtheVet, from the Veterans Administration.

**[\>\> JUSTINE HANDELMAN:]{.underline}**

I\'m Justine Handelman, I am with the BlueCross BlueShield Association.

**[\>\> ROBERT TENNANT:]{.underline}**

Rob Tennant with the Medical Group Management Association.

**[\>\> ROSS MARTIN:]{.underline}**

Ross Martin, Director of Health \-- Pfizer Health Care Informatics,
Pfizer, Inc.

**[\>\> SUSAN CHRISTENSEN:]{.underline}**

Susan Christensen with the Agency for Healthcare Research and Quality, I
work on the privacy and security project, and I\'m here for Helen
Burstin today.

**[\>\> LORRAINE DOO:]{.underline}**

Lorraine Doo with Centers for Medicare and Medicaid Services, in the
office of e-health standards and services.

**[\>\> MARK GINGRICH:]{.underline}**

Mark Gingrich, from RxHub, sitting in for J.P. Little today.

**[\>\> KELLY CRONIN:]{.underline}**

Kelly Cronin, I\'m the Director of Programs and Coordination in the
Office of the National Coordinator for Health IT.

**[\>\> ROSE MARIE:]{.underline}**

Rose Marie Robertson, and delighted to be a part of this Working Group.
It looks like we have a lot to accomplish in the next period of time,
and the testimony today looks exciting and important.

**[\>\> NANCY:]{.underline}**

Thank you. Nancy Davenport-Ennis, and my organizations are the Patient
Advocate Foundation as well as the National Patient Advocate Foundation,
currently serving as a Co-chair of the Consumer Empowerment Working
Group.

**[\>\> SUSAN McANDREW:]{.underline}**

Susan McAndrew, I am the deputy director for health information privacy
in the Office for Civil Rights.

**[\>\> CHARLES SAFRAN:]{.underline}**

I\'m Charlie Safran. I\'m representing the American Medical Informatics
Association. I\'m an associate clinical professor at Harvard Medical
School.

**[\>\> PAUL UHRIG:]{.underline}**

I\'m Paul Uhrig, executive vice-president of SureScripts, sitting in for
Kevin Hutchison today.

**[\>\> MARC BOUTIN:]{.underline}**

Marc Boutin, Executive Vice President of the National Health Council,
which is an umbrella organization representing approximately 100 million
people with chronic conditions.

**[\>\> LYNN EGAN:]{.underline}**

Lynn Egan from the Office of the National Coordinator, sitting in for
Jodi Daniel.

**[\>\> DAVETTE MURRAY:]{.underline}**

\-- I\'m a program manager at TMA.

**[\>\> NANCY:]{.underline}**

I think in terms of opening remarks what I would like \-- yes?

**[\>\>:]{.underline}**

On the phone \-- (Inaudible)

**[\>\> NANCY:]{.underline}**

Thank you. And with those introductions made, I would simply like to
say, Kelly, thank you to you and your staff for listening and working
with the members of the Consumer Empowerment Working Group to invite in
those who will be testifying today.

The testimony does indeed look very important, and it will help each of
us to answer questions around the issue of personal health records.

We invite the members of the panel today during your question and answer
segment to try to get those questions answered that you think consumers
are indeed going to want to have answered, as we move through the
presentations today of defining what will a personal health record look
like in the United States of America, and exactly how will that tool be
used by consumers as they move across systems of health care delivery
throughout the spectrum of their life.

If there are further comments, Rose Marie, you might like to share.

**[\>\> ROSE MARIE:]{.underline}**

Okay, thank you for being here so much, and I do invite you to make
comments as you would like throughout the day.

It\'s our pleasure this morning to welcome as the first person
testifying Daniel Sands, who is with the Harvard Medical School, Beth
Israel Deaconess Medical Center. Dr. Sands will have a discussion with
us to define personal health records. We welcome you, Dr. Sands.

**[\>\> DANIEL SANDS:]{.underline}**

Thank you very much. I want to thank the committee for inviting me here
today. I was asked to discuss definition \-- well, let me tell you who I
am, first. I am at Beth Israel Deaconess Medical Center at Harvard
Medical School. I also am on the Board of Directors of American Medical
Informatics Association, and I\'m a fellow of the American College of
Medical Informatics. What I will be discussing today, which is
definitions and issues relating to personal health records, is partially
a work product of some work we did at the American College of Medical
Informatics.

I\'ve called this "a personal health record by any other name would
smell as sweet." And we\'re going to talk about the definitions,
requirements and issues in personal health records to sort of lay the
groundwork for much of the discussion today.

I was on a working group of Connecting for Health, which was a
public-private consortium involving the Markle Foundation, and in 2004
we put out a definition of personal health records, which was that a
personal health record is an electronic application through which
individuals can access, manage and share their health information in a
secure and confidential environment. It allows people to access and
coordinate their lifelong health information, and make appropriate parts
of it available to those who need it.

I view that as a very useful starting place to start thinking about a
personal health record, but I think we need to understand that we\'re at
a very early phase here and we need to be very inclusive and understand
that some of the definitional issues are really perhaps platonic ideals,
something that we may get to over the next, 3, 5 or 10 years, and that
today we may not be able to meet all of these criteria.

Another useful definition came from the American Health Information
Management Association in 2005, and they wrote that the personal health
record is an electronic, universally available, lifelong resource of
health information needed by individuals to make health decisions.
Individuals own and manage the information in the personal health
record, which comes from health care providers and the individual.

The personal health record is maintained in a secure and private
environment with the individual determining rights of access. The
personal health record is separate from and does not replace the legal
record of any provider.

Now, I want to contrast those definitions with the definitions of an
electronic health record. And the interesting thing about electronic
health records, electronic medical records, is there are many different
definitions that have been put forth. I actually chose my definition for
this testimony from an important reference, the Wikipedia online, and
actually had a good working definition, which is that an electronic
health record is a medical record or any other information relating to
the past, present or future physical and mental health or condition of a
patient which resides in computers which capture, transmit, receive,
store, retrieve, link, and manipulate multimedia data for the primary
purpose \-- this is important \-- of providing health care and
health-related services.

It is very important that we all understand the relationship between an
electronic medical record and a personal health record. I would view
this as sort of a yin and yang diagram where we have complementary
pieces. We have the personal health record, which is a tool for the
patient and is a data source for an electronic medical record. An
electronic medical record is a tool for the clinician, and is
potentially a data source for the personal health record.

Some people would define the electronic health record as the totality of
all of this information.

The interesting thing about personal health records is that all of us
recognize that we live in a very fragmented health information
environment. And some people have proposed that perhaps personal health
records can help bridge the gap among our various information silos,
which I think is nice.

Which leads me to some of the other \-- some of the important issues
here, which are what are the benefits to personal health records. And
we\'ll come back to more definitional issues in a moment.

Well, let\'s talk in terms of all the major stakeholders here. The
benefits to the patient would include better adherence to medications,
more engagement in their health, and studies have shown that patients
who are nor engaged in their health, if they have chronic illnesses
leads to potentially better health incomes \-- health outcomes, sorry
about that. One question I have for us to think about is, is this
something that\'s true for the broad population? Or is it something
that\'s really true for parts of the population?

Then there are health management tools, tools to help people manage
their health. Asynchronous, secure electronic communication. And a
facilitation for enrollment in clinical trials. Something that many
patients with chronic illnesses \-- and there are over 90 million
patients in this country who have chronic illnesses; many of them often
are looking for clinical trials, and this might be an excellent way for
them to find out which clinical trials would be appropriate for them.

And disease management. Disease management is something often inflicted
on patients by health insurers. I don\'t think it really needs to be
that way. I really view disease management as something that can be a
collaboration among patients, providers, and perhaps health plans.

In order to do that, we really need an interconnected information
environment.

The PHR benefits to a clinician can include a better clinical database.
Most of a patient\'s life, hopefully, is spent outside of the doctor\'s
office, where we see our patients, or outside of the hospital. So if
they\'re outside of a health care setting, how are we gathering that
data? We really, as clinicians, have only a small glimpse into what goes
on in patients\' lives, since most of us don\'t spend a lot of time
doing house calls anymore. So in order to get some of this information
we ask patients to bring into the office information about what they\'re
doing. Bring in a blood pressure log, bring in your glucose log, bring
in your blood pressure log, tell me what you\'ve been eating over the
past week.

Well, this information might be more effectively shared so that I can
take better care of the patient if this were shared electronically. If
the patient were actually acquiring this information in their daily
lives, and entering it into a system or capturing it automatically into
a system, then we can share the information better.

Transferability of health records. You know, if we think about the
vision of health care that we all imagine where we can freely exchange
health information as necessary to benefit the patients, there are
different ways to think about this. One is that there is some
infrastructure, some community infrastructure, a national health
information network, for example, that might allow us to exchange
medical records that health care institutions and health care plans
have, but getting the patient involved in that might involve something
like a personal health record.

And what if the personal health record were the conduit for that
information? What if that really were the glue?

And then asynchronous electronic communication is something that is
beneficial to clinicians, as well, allowing us to take care of our
patients when it is convenient for us to do so, and not in the
high-intensity, high-cost office environment.

And then there are benefits to the health system of personal health
records. Potential benefits include bridging the gaps among the
information silos that I referred to a few moments ago. Public health
advisories, public health surveillance. And again, clinical trials
recruitment and clinical research. All of these things are wonderful
benefits to, I think, our health care system.

Let\'s talk for a moment about presentation of information. As patients
look at their medical records, it is often hard for them to really
understand what\'s there. And if a patient can understand what\'s in
their medical record, I think they can do a better job managing their
health. They may become more engaged, which would lead to better
outcomes. I much prefer taking care of a patient who is actively engaged
in their health, and interested in what\'s going on with them.

So how can we do this? I might imagine that a personal health record has
in it functionality, so that patients can understand better what\'s in
their record. For example, a patient putting on their PHR glasses, if
you will, might look at the problem list that I have, that I\'m keeping
on the patient in my medical record, and when they look at the word
hypertension without the glasses, they say gee, I\'m not a tense person,
what does this mean? They put on their glass and they say, oh, high
blood pressure. That is the value I think we can do, we can bring, with
personal health record technology.

And we\'ll next turn to trust. A personal health record, in order to be
of value to clinicians and to patients, needs to fulfill a bunch of
criteria so that it can be trusted. And I won\'t go into these in a
great amount of detail, but some of them are communications, any kind of
communications, whether from person to person or from machine to
machine, must be encrypted. Integrity, data integrity, must be
maintained at all times.

Authentication of information sources. We need to know that a particular
data point came from a particular data source, and I will talk about
data sources in a few moments.

These need to be time-stamped so we know exactly when this piece of data
was acquired.

There needs to be nonrepudiation, so that people can\'t deny that they
actually provided this piece of data.

Withheld data needs to be flagged. And let me explain what I mean by
that. If a personal health record is to serve as a conduit for clinical
information, so that I, when I\'m taking care of a patient, can say
transfer your medical record to me, let me see your personal health
record, and their personal health record may be an amalgam of records
from various providers that they\'ve seen, I need to trust that this is
a complete record. I need to know that this data has not been altered,
as I mentioned before.

If a patient wants to withhold information from me, they certainly have
that right. However, I think it is important that patients \-- that we
need to know that something is being withheld. It\'s okay, as long as we
know that something is being withheld. I think as a clinician this is
very important to me.

And if we are to ensure full interoperability, we need to ensure the use
of standards \-- standard terminology use whenever it is possible.

Let\'s turn now to the components of a personal health record. I think
that one set of components we can look at is data. And the data might
include many different types of things. Medications, for example,
medication allergies and intolerances, medical problems, test results,
the results of physiologic monitoring, which may be home monitoring or
clinician monitoring. And then there are functional components such as
secure electronic communication. Symptoms and health status monitoring;
for example, what have I been eating over the last few weeks, how much
exercise have I been getting, and so on. And self-management tools,
tools to help our patients better manage their health.

These might be static information tools, such as resources, references
they might look at, to help them take better care of themselves, and
also dynamic tools that adapt to the type of data that is in the
personal health record.

When we look at data types and data sources I think it\'s important to
think through this as we think about personal health records. There are
subjective data types, and there are objective data types. And the data
sources can include patients, home instrumentation, clinicians, and
claims databases.

So the patient might provide data that is subjective, such as manual
entry or results of online data capture, such as their symptom scores,
qualitative descriptions of how they\'re feeling, and various related
data types.

On the objective side, the patient may manually enter blood pressure
measurements or weight. Although these are objective, they may not be
acquired directly from instrumentation.

When we turn to home instrumentation as a data source, there are no
subjective data here, but there are plenty of objective data sources
that we might use. For example, automated interfaces with blood pressure
monitors from home, weights from an automated scale, peak flow
monitoring, and so on. Plenty of this home instrumentation exists,
we\'re often giving it out to certain patients under certain conditions,
and I think to be able to integrate this into a personal health record
is where this becomes very useful.

Clinicians can provide subjective data and objective data through
automated interfaces with their medical records. And claims databases
provide objective information, and this can be done through automated
interfaces. I will talk about the limitations of that in a moment.

Let me just point out the need for something, some sort of data to seed,
to prime the pump, to provide information as a basis for building a
personal health record.

Generally, patients have told us that they do not want us to just start
from ground zero and enter everything themselves. They need some nidus
of information on which to build. An empty vessel strategy is not viable
for personal health record success.

When we look at data strategies, we can look at low-hanging fruit.
Claims data can be \-- is a low-hanging fruit, because it\'s already
there in computerized format. Medication data, for example, is available
through health plans, at the claims data, and it may be available in the
future through networks like SureScripts that may provide us dispense
drug history as well from the pharmacies.

And I will tell you I had some experience working with this in my former
capacity, we did a project in Massachusetts called MedsInfo-ED, where we
used claims data to provide medication lists to clinicians at the point
of care, to any patient coming into one of several emergency departments
in Massachusetts. It\'s a very useful tool, but it also pointed out some
limitations in doing this work. However, it is some data. It\'s better
than no data, perhaps.

Claims data can also provide us with diagnoses. It\'s not perfect, as I
mentioned, and we\'ll talk a little bit more about that in a moment.

Home monitor interfaces, getting out of claims data, home monitors
provide a useful data source and a way to prime the pump.

Many States have immunization registries, which are tremendously useful
in the pediatric population. Interfacing with those may be a wonderful
way to prime the pump as well.

Pharmacies may be a source of information, as I mentioned a moment ago,
and commercial labs potentially can provide potential information to
provide the PHR pump.

So what are the problems with claims data? I have met with health plans
and talked to them about this, and many health plans, and perhaps some
of you are with health plans, are excited about the prospect of personal
health records, or perhaps cautiously optimistic.

Well, when we look at medications, some of the problems we have are
legal barriers to the release of medications from health plans to
clinicians at the point of care. This was a serious issue in
Massachusetts, and there are State regulations that may make this
problematic.

Claims data for medications also does not come with medication
instructions. So for example, we might have a claim for atenolol 100-mg
tablets, 90 pills were dispensed. That\'s what we know from the claims
database. We don\'t know if the instructions were to take one pill a day
or half a pill a day, or what it was, and so we really don\'t have the
full clinical information we need at the point of care.

When a patient does not submit a claim, so for example they self-pay, we
may not have that information at all. We don\'t have that information at
all from claims data.

There are no over-the-counter medications available through claims data.
And this data may be filtered because of these legal barriers that we
mentioned before. So for example, in Massachusetts we couldn\'t deliver
any mental health information. So if a patient was on an
anti-depressant, we wouldn\'t have that information. We couldn\'t
deliver HIV medication information, because you might surmise the
patient might be infected with HIV. As a clinician, I find that
crucially important to know; however, this is information we could not
have at the point of care. That medication information needed to be
filtered, even though this medication information could be the source of
many drug interactions.

Diagnoses in claims data also have limitations. Any of us who are
clinicians know that claims data does not have much bearing with
reality. Often, the diagnosis that is selected and submitted for claim
is something that was convenient to find on the back of a piece of paper
that we circled. And secondary diagnoses may or may not be listed.

And of course although we may know from claims data that a test was
performed, we don\'t know the results of these tests. So that\'s limited
data there, as well. And of course, we don\'t have any other clinical
information from the point of care.

So although claims data is not perfect, it can be something to help
prime the pump.

Let me turn now to personal health record media. Personal \-- if we look
broadly at personal health records, we might say, well, you know what,
paper media is really okay. And some of my patients who are very engaged
in their health make sure that they\'re carrying around a piece of paper
with their medications and their allergies and their doctor\'s name and
their insurance information and so on on a piece of paper. And that is a
type of personal health record, but I don\'t think that\'s the kind of
personal health record we\'re all here to discuss today.

There is a great deal of value in this type of information, however,
because in the information vacuum that we have in many health care
settings, this is much, much better than no information.

The Web can provide us information, as well. So we can have stand-alone
personal health records through Web sites. They can also be
interconnected, so that they can get information from claims databases
and other places. And then we could have Web-based personal health
records that are tightly tethered to a health care provider institution.

So the paper examples I think we all know about, many of our parents,
our kids, might have these kind of records, the paper records.

In terms of Web-based records there are many examples. MyHealtheVet is
one example of something that\'s actually tethered to a health care
provider institution. A Web site I helped develop called PatientSite is
in use by 30,000 patients today and rising at Beth Israel Deaconess
Medical Center in Boston. And these types of Web sites allow patients to
do secure communication, see their record online, have online health
tools, conduct convenience transactions such as requesting prescription
refills and appointments, and do provide a lot of data. But it\'s
important to recognize that these records are tethered to the provider
institutions.\
Although this may not be an issue with the Veterans Administration, it
is an issue if we have a provider organization like mine, where someone
may choose to go across town to a separate provider organization.

There are plenty of commercial examples of Web sites that do this, some
that I\'ll mention. WebMD is one, Medem, which I think will be
testifying later, the IHealthRecord.com, and then there are others.

The other type of media is removable media. And removable media is sort
of interesting, because patients often trust something that they can
hold in their hands. And we might say a CD-ROM might be a good way to do
this, and we can have small CD-ROMs right now, but I think a thing
that\'s more popular is a USB drive, and I think I don\'t have mine in
my pocket, but you\'ve all seen them, you store your presentations and
other important information on them. And a USB drive can store programs
and information, and can be secured, which is very, very important,
because we need the security because if this thing were ever lost people
could get access to that information.

What\'s more exciting about removable media is when you can interconnect
it, when you can connect this using some standards that are in
development, such as the continuity of care record, and you can plug
this into a physician\'s electronic medical record, for example, and
download information from that. That\'s where it gets kind of
interesting, and we can begin to envision how this might be something
that could be transformative in our environment.

I would say that what we have is we have a continuum of interoperability
to think about. So on the one hand, you have a paper-based record that
truly cannot and does not interoperate with anything. However, this is
something that I can own and I can hold, and I \-- you know, patients
can carry with them, and so on.

And then there is something that is tethered to a health care
institution like PatientSite or MyHealtheVet. And then there are things
that are removable and may or may not interconnect.

The factors we need to think about when we\'re looking at these
different types of interoperability, the questions we should ask are who
enters the data. Who controls the data, that\'s very important. And just
to drive that home from a personal standpoint, although my patients can
look at their information on PatientSite, their test results and all
kinds of information through PatientSite, they can\'t take it with them.
They can print it out, but they can\'t really take it with them.
There\'s not true interoperability among institutions. We control that
information.

Who controls access to the information? And who depends on the record?
As I mentioned before, electronic medical record is something that I
depend on as a clinician, and a personal health record is something that
a patient really depends on.

I mentioned that we can get very complex very quickly, and that\'s why
we have to be openminded when we think about what is a personal health
record. And I think in today\'s testimony you\'ll hear various
discussion about that.

As we \-- a fairly simple thing to do is a tethered personal health
record. Also fairly simple is a stand-alone personal health record.
However, the more interconnected a personal health record becomes, the
more complex it becomes as a project. And although we should set that as
our ultimate aim, to help connect this disconnected health care system
in which we operate, or we try to operate, it is not necessarily
possible to do this right away. So we really need to think about that as
something that we will eventually achieve.

**[\>\> ROSE MARIE:]{.underline}**

Dr. Sands?

**[\>\> DAN:]{.underline}**

Yes.

**[\>\> ROSE MARIE:]{.underline}**

We want to make sure we have time to actually interact with you and
chat, so if you could wrap up.

**[\>\> DAN:]{.underline}**

I\'m almost done, that\'s perfect. A few final questions. Who will use
the personal health record? Who will use the personal health record?
Well, I think the truly well patients, the patients who are in the prime
of their life and want to live forever, the patients who run 5 miles a
day and watch everything that they eat carefully, I think these are
people who will use a personal health record.

I think also the worried well are people who will use the personal
health record. People who are very engaged in their health, but really
don\'t have anything going on with them. So those are two subtypes of
the population.

Engaged patients. Engaged patients who have chronic conditions such as
diabetes, cancer, HIV and other things, these are potential markets for
personal health records.

Parents of young children, especially young children who are ill, is
another group of people who will benefit from personal health records.
And possibly, other people, any of us, if we have the appropriate
incentives.

A related question is who will fund this. Well, perhaps individuals, if
they have the money, and they have some of these needs, some of these
populations I mentioned to you. Health care institutions may fund these
if they\'re tethered, because it might encourage patient loyalty. And
health plans may also be interested in doing this, to improve the care
that we deliver. But it\'s very important that we understand that if
health plans are involved in this, that it\'s unidirectional flow of
information. Many health plans think that they will get information from
the personal health record to help them manage and \-- help them manage
risk. And I think we want to be very careful about that, and the privacy
issues there.

So finally, there are a bunch of research issues that we can talk about.
What do patients want from personal health records, what are they
willing to pay for, what are some of the compelling business models, how
can personal health records help patients create personal health plans,
how do we assess accuracy, how do we assess the concordance between
patient acquired data and clinician acquired data, what consumer health
vocabularies do we need. How do we best data for patient use, and how
does that vary by literacy level, both health literacy and general
literacy. What are some of the liability issues for providers.

In conclusion, I would like to tell you precise definitions for personal
health records are difficult, but at this early stage of development we
need to be inclusive of personal health records, so all definitions I
think apply. The ideal characteristics for the future are apparent, and
we need to strive towards those goals.

Our business cases are evolving, and personal health records are an
important potentially disruptive health information technology. Thank
you very much.

**[\>\> NANCY:]{.underline}**

Thank you, Dr. Sands, for your comments to the committee. And I would
now like to open the floor for questions for Dr. Sands. Yes, Marc?

**[\>\> MARC B.:]{.underline}**

First of all, thank you very much for your presentation, I appreciate
it, and I think your explanation was very thorough in a very short
period of time.

My question relates to your comments regarding the trust, back to both
on the provider or clinician side but also on the patient side. When I
look at some of the limited research and anecdotal evidence on people
with chronic conditions, there are a lot of concerns over the notion of
information being redacted. In other words, if they want to be able to
withhold information. And currently in our system, people withhold
information all the time, for both personal reasons and legal reasons.

This would be a slight transformation in terms of the status quo if it
were to be red-flagged, so to speak. But it strikes me \-- or raises the
issue of where is the appropriate balance. Because clinicians, in order
to trust it, want that information. Some people with chronic conditions
do not want that information flagged.

At this point in time I\'m not sure if there\'s good research on either
side to figure out where the appropriate balance is to obtain the
greatest outcome with these personal health records. And I don\'t know
if you have any thoughts specifically to that, or are aware of any
specific research that addresses where that appropriate balance ought to
be.

**[\>\> DAN:]{.underline}**

Thank you for your question. I am not aware of specific research in that
area. If a personal health record is viewed as a tool simply for the
patient, then the issue of withholding and transferring information does
not become \-- is not really relevant. As soon as we use this as a
source of clinical information, something to prime the clinician\'s EMR
pump, then we do have to be concerned about that trust issue. And what
I\'m proposing is that information can be withheld, but needs \-- we
need to know that there\'s a place holder, that something was withheld
here. We don\'t need that it was a psychiatric drug, we don\'t need to
know what it was, but medication withheld here. Doctor\'s name withheld
here. Whatever that is.

And I think that will be a useful way to encourage the trust of
everyone.

**[\>\> NANCY:]{.underline}**

Yes, I\'d like to recognize you.

**[\>\> THERESA:]{.underline}**

From the VA. Thank you for your excellent presentation. Can you give me
the top three clinical adoption success criteria issues which you have
seen work for the clinicians to get them to actually use and work with
the patients?

**[\>\> DAN:]{.underline}**

You want to know the top three reasons that clinicians will adopt these
technologies?

**[\>\> THERESA:]{.underline}**

Yes, what has been successful.

**[\>\> DAN:]{.underline}**

Well, this is not based on data, but based on experience. I think that
education of physicians is most important. Many physicians feel that
they will be overrun with information and communication if they open the
"floodgates" to patients. Data from our institution and others has shown
that not to be the case, and that for every 100 patients that is using a
system like this, that I might have, they will only generate less than
one message a day to me.

So we can multiply that out, and we see it\'s not a large demand for
time in terms of number of messages. Furthermore, the amount of time
that it takes to respond to electronic communications is not very great.

So I think \-- and there are a bunch of educational issues related to
that that I think are important. Other issues are to explain to
clinicians that you\'ve got to communicate with patients one way or the
other. And would you rather communicate on the phone or would you
communicate on your own time, when you can do it most comfortably
through an asynchronous communication medium.

I don\'t have a third that I would present to you right now, but I would
say that as we move into an environment where we\'re being held more
accountable we as physicians are being held more accountable for the
outcomes of our patients, we\'re going to be much more interested in
getting information from various aspects of our patients\' lives and
really engaging them in their health care.

**[\>\> THERESA:]{.underline}**

Thank you.

**[\>\> NANCY:]{.underline}**

Thank you. Yes, Robert.

**[\>\> ROBERT:]{.underline}**

Excellent presentation. One of challenges that this Workgroup is facing
is not only sort of the design of the PHR, but how do you get it out to
the marketplace. And I\'m interested in your experience with Beth
Israel. How did you present this product to the patients, was it
strictly on a clinical basis? Did you emphasize privacy and security?
How did they react to it?

**[\>\> DAN:]{.underline}**

Selling this, quote, selling this to patients, remembering that in a
tethered environment most often patients don\'t have to pay for this, in
our environment at least they don\'t, the patients love this. And the
biggest predictor of a patient wanting to sign up for this is if their
physician mentions it to them.

And patients gravitate to this technology for one of several reasons.
For some patients, it\'s because they find it annoying to use the phone
to ask for prescription renewal. Very simple. It\'s the convenience. For
other patients it\'s because they want to communicate asynchronously
with their physicians. And for reasons that are beyond me, this is
something that physicians have not welcomed, but this provides a
framework in which to do this. So for some patients that is the
incentive.

And then for other patients, it\'s because they want to see their test
results online.

So it\'s a much easier sell to patients than it is to physicians.

Now, although I said sell, the real interesting interest is, well, what
if patients actually had to pay for it. And this is where more research
needs to be done, and I think we\'ve got to figure out funding models
and business models for this.

**[\>\> NANCY:]{.underline}**

And there was a question also from Ross Martin.

**[\>\> ROSS:]{.underline}**

This is a great tee-up for the day, I\'m really glad you went first. Our
charge in part is to make recommendations to the full committee, the
Community, on policies and related ways we can stimulate the adoption of
personal health records.

And I think you nicely articulated this \-- the distinction between the
tethered and the stand-alone, and where we\'re trying to get, which is
the interoperable, interconnected, fully functioning personal health
record which is truly useful in the marketplace. Do you have
recommendations to us about what we should put in place, or what we
should recommend be put in place, from a policy perspective, perhaps,
about the need that these things be at least \-- even if they are
tethered, for example, that a patient have rights to get that
information in a standardized fashion electronically, so they can move
it somewhere else if they want, not just in paper. Those type of
recommendations that we could pose to try to create a market that will
get us faster to this integrated place, even if we start on one of those
ends.

**[\>\> DAN:]{.underline}**

I appreciate the question. I think, in my opinion, the committee should
not be heavy-handed about recommendations because we really need to let
everything bloom, and then figure out what works. But I do believe that
insisting upon \-- or recommending that standards be used whenever
possible is one thing that\'s important. And recommending security, some
of the security issues I talked about earlier, I think are important.
Emphasizing the issues of trust.

And standards are very important. And of course this fits into a larger
framework for what we\'re trying to do as a nation right now.

**[\>\> ROSE MARIE:]{.underline}**

Thank you very much. We don\'t have time for further questions, but
we\'ll have your testimony to consider over time.

**[\>\> NANCY:]{.underline}**

And Dr. Sands, as you are leaving, I must commend the dual definitions
that you gave to us around the personal health record, and identifying
within those definitions the distinction between having access to and
having ownership of. So thank you so much, wonderful beginning to the
day.

We would now like to invite panel one to be seated for discussion. We
welcome those parties to take a seat, and we will then introduce each.

I would like to welcome the members of the panel, and we will introduce
you as you are each going to be testifying before us. So with that, we
would like to welcome first for testimony Ritu Agarwal. She is with the
Center for Health Information and Decision Systems at the University of
Maryland. We welcome you today.

**[\>\> RITU AGARWAL:]{.underline}**

Thank you, it\'s a pleasure to be here, and I\'m delighted to be here on
behalf of my center, the Center for Health Information and Decision
Systems. Before I get started, I\'d just like to introduce my colleague,
Corey Angst, who is the associate director of the center.

By way of background, I\'m a professor of information systems at the
University of Maryland, and our center has the mission of researching
issues and problems associated with the introduction of information
technology into the health care system.

So for the past four years our research has focused on three major
questions. First, what are the barriers impeding the adoption of
personal health records, and how can they be overcome. Second, what is
the demonstrable, measurable value associated with the use of this
technology by populations and by clinicians, by patients and by
clinicians. And third, where and how do personal health records fit into
the overall scheme of the National Health Information Network.

So these are the three broad research questions that the center has been
addressing, and what I\'ll be doing in the 15 minutes that I have this
morning is just cherry-picking some findings from our research program
that most directly address the questions that AHIC has posed.

I have a brief set of Powerpoints that I hope everybody has a copy of
that has some talking points. So let me start with the overall question
of the impact of personal health records.

There has been a lot of discussion in the research literature that
personal health records will lead to improved health outcomes, but I
think we are a long way from actually showing that link. That is an
elusive link that is going to take at least 10 more years of research to
establish unequivocally the relationship between the use of the PHR and
improved health outcomes.

What we can say is there are a lot of intermediate things that PHRs
result in, and I will talk about a few of them as we go along.

To begin with, let\'s address the question, what exactly do patients
want from the PHR? And one of the things that I\'d like to underscore
throughout my testimony is that building upon what Danny said, there\'s
a lot of misinformation and miscommunication in the general population
about what exactly a personal health record is. So to put it somewhat
frivolously, if we walk down Independence Avenue and we do a random poll
of people walking on the street, we\'ll probably get 15 different
definitions of what the general population understands to be a personal
health record.

With that as backdrop, it is no surprise that people have very different
expectations of what a personal health record will deliver for them. At
the current time, a lot of patients believe their personal health record
is nothing more than a digital repository of their medical information.
In other words, they would use it largely to track their family medical
history, they would use it largely to track their doctors visits, their
interactions with the clinicians, and their various medications that
they\'re on, but they would use it less in decision support mode or they
would use it less in a mode where they\'re actually empowering
themselves to take control of their own health.

So instead of a physical paper repository of information, the patients
are viewing it as an electronic repository of information.

There have been a few studies of patient value in the context of
personal health records, and it\'s no surprise that people who have
access to such digital repositories do believe that they have a better
understanding of their conditions, rightly or wrongly. As Danny pointed
out, sometimes it\'s dangerous to provide patients with a lot of medical
information that they may not be able to understand and fully comprehend
the consequences of. Nonetheless, the fact that the patient has access
to this information does give them a perception of control, a perception
of empowerment, and the fact that now they are more in charge of taking
care of their own medical condition.

As I mentioned earlier, we are still some ways from seeing value. We
need a lot more PHR demonstration projects, we need a lot more
longitudinal research that will establish the link between PHR use and
better health.

In the meanwhile, there are some questions that we have answers to, and
I would like to share some of our findings with you related to the
following questions. What drives the use of personal health records,
what are privacy concerns around personal health records and what can we
do to alleviate them, and who should be providing the personal health
record to patients.

Our research suggests that there are three major reasons that would
drive individual use of personal health records. First is the simple
fact of convenience. As I indicated earlier, having this digital
repository is a huge convenience for patients who don\'t have to start
digging around in desk drawers or going through sheaves of paper every
time they need to have an interaction with their clinician.

The second major predictor is compliance. And here the patient believes
that having this digital repository will help them keep track of what
medications they need to take, will help them keep track of various
physical indicators that they might need to monitor such as weight,
blood pressure, and so forth, and overall will help them be more
compliant with any kind of medical regimen that they might be on.

The third major predictor of PHR use is a concept called connectedness.
And there is a sense amongst patients, even though they don\'t actually
see it yet, there is a sense that having this electronic repository of
information will allow them to feel better connected with their health
care providers. In other words, patients have this vision that down the
road the repository will help them have better communications, improved
conversations, more empowerment in any interaction they have with their
health care provider.

So to summarize, convenience, compliance, and connectedness are the
three major reasons why patients would want to use personal health
records.

Let me turn now to the second issue of privacy. Clearly, privacy has
been up front and center in all discussions of electronic health
information, and privacy concerns are a huge issue amongst many
different populations, potential users of personal health records.

Will people opt out of personal health records? We recently conducted a
study to see to what extent would people be willing to relinquish some
privacy concerns if they believed that the personal health record would
truly provide them with value.

We discovered in this research \-- and the details of our study are in
the paper that I believe is part of your packet, and if it\'s not I\'d
be happy to share it with you. We discovered that message framing and
issue involvement are two major drivers of people\'s attitudes about
privacy of personal health records. And let me explain what those mean.

Message framing essentially means what is the type of communication,
what is the type of information that is being imparted to the users of
personal health records. Is the message framed in a positive manner, and
does it come from a source that is credible? Or is the message framed in
a negative or neutral manner, and is the source that is delivering the
message not credible to the hearer?

Our research suggests that if the messages are appropriately framed, we
can indeed overcome privacy concerns, and generate a greater attitude
change towards the use of personal health records than if the messages
are not appropriately framed. And there\'s a lot of detail in this
research study that describes precisely how such messages can be framed.

We also asked patients how comfortable would you feel if a PHR was
maintained by lots of different types of parties, ranging from the
employer, all the way to the pharmacist, to the doctor, or to the
hospital. And our research suggests that there are three major trusted
providers of PHRs. The doctor is #1, the hospital is #2, and the
pharmacist is #3.

And the least trusted provider of a PHR is the employer. So patients are
more likely to adopt PHRs and begin to use them if any of the trusted
parties provide the PHR.

Danny spoke this morning about the definition of a PHR, so I won\'t get
into any more detail. There is some information on your slides to
describe the various kinds of PHRs that I wanted to briefly touch upon.
But the point that I\'d like to make is there is also a difference in
the population about the type of PHR that people prefer. And our
research shows that the clinician and the stakeholder population, as
well as the general population, do prefer, enough of them do prefer the
networked PHR, which is the most sophisticated interoperable type of
PHR. And I think that\'s very encouraging.

Also encouraging is the finding that as we move from a more primitive
PHR, that is, the paper-based form that Danny described, to the more
networked interoperable PHR, the proportion of population that\'s
willing to go towards the more sophisticated solution is also showing an
upward trend. So that\'s an encouraging finding.

We hypothesized that older people would prefer a more primitive form of
PHR, because we were interested in identifying what are some target
populations for early adopters. And surprisingly, we discovered that was
not the case, which I think was an interesting finding, because older
people tend to have more medical conditions and tend to want greater
ownership of their medical care. So they might well represent a good
target population of early adopters who can take charge and be empowered
to manage their own health care.

I\'m running out of time here, so let me quickly summarize by making a
few closing observations. My center and our research suggests that
personal health records are a very crucial component of the overall
national health information network infrastructure. We believe that use
will gain momentum, but a lot of this momentum has to do with the
appropriate management of public information campaigns, with the
appropriate provision of personal health records and encouragement from
trusted parties, and I mentioned what those trusted parties were; and a
strong public information campaign to overcome misconceptions about the
personal health record that might be running rampant in the population
that we have no knowledge about.

There are two major issues to be resolved in our opinion. Data
protection and privacy, and Danny alluded to that this morning, and I\'m
sure other presenters will speak about that as well. By data protection
I mean not just ensuring that the data are secure, but also having some
very well-defined boundaries between what constitutes data that the
patient and clinician have access to, versus what constitutes the data
that the employer or the pharmacist or any other stakeholder have access
to.

And then finally, linkages with the overall system that as we evolve
toward a more sophisticated national health information infrastructure,
how will PHR fit in with electronic health records and everything else
that makes up the system.

Thank you very much, and I\'ll take some questions.

**[\>\> ROSE MARIE:]{.underline}**

We\'ll do questions at the end, but thank you very much for your
presentation. We\'ll turn now to Marc Pierson from Whatcom Region Saint
Joseph Hospital.

**[\>\> MARC PIERSON:]{.underline}**

Thank you, it\'s a privilege to be here. Can you hear me okay? Is this
working?

I\'ve provided a fairly large packet, big print, so I could read it at
least, of my PowerPoint presentation that I\'ll talk from. You\'ll
probably get carpal tunnel syndrome because we\'re going to be moving
really fast through it. And I\'ve also provided three pages of testimony
which specifically answer your questions, so you can throw the
PowerPoint away later if you like.

It\'s a privilege to be here, as I said. I was an internist and ER
physician for about 20 years before I got into information technology,
and have been employed for about the last 10 years doing this kind of
stuff, and for the last 4 to 5 years working directly with patients
funded by Robert Wood Johnson Foundation and AHRQ to actually find out
what they want, build it, and let them use it. That\'s kind of what I\'m
here to report on.

I have to say it\'s wonderful to follow Danny and Ritu, because I agree
with almost everything that\'s been said, it creates a wonderful
background and makes my points easier. Do you guys have this out in
front of you? That will work.

Strange second slide, it\'s listed as Slide 1. Who are we and where is
home? I can\'t stop myself from starting every talk with this. I think
that when we ask this question, and we should certainly if we\'re
working for constituents and the Federal Government, it\'s very
important that we at least have a large enough scope of who we think we
are, that it includes communities. If it only includes our
organizations, we\'re not going to do anything that patients are really
going to like in the end. So I think it\'s a very important issue, I
think it\'s really what the chasm report was all about, saying let\'s
find a system that actually works across organizations. And of course,
care is predominantly broken between our organizations; most of the
quality improvement efforts I see are focused inside organizations. Go
talk to some patients. It\'s between the organizations that they want
help.

The second slide, boundary of a system. You can look at this on your
own, but Demming I think was a really great sort of thinker in this, and
he said your system should be as big as you possibly can do it, and
limit it only by whether you can manage it. And there are an awful lot
of things that do need to be done within provider organizations and
payer organizations, but there are some things that actually scale much
larger, and we should actually think of them that way. And you\'ll see
my focus for about 10 years has been trying to get anyone that will
listen to me to think about health care information as a utility. Like
public utility, like electricity and roads and those kinds of things.
When you shift to that frame, then I think you can get something that
will truly transform American health care.

So Slide 3. There are four things that I think we\'ve learned that
certainly were not the way I was thinking five years ago. I actually had
in my mind that patients were incompetent. I\'m not saying they were
incompetent to get to and from places, but when I thought they needed
me, and they couldn\'t live without me.

What I\'ve learned is that patients, when you consider them in the
context of their own social network, are incredibly competent. A lot of
them within two or three links from them have a nurse or doctor in their
family. They can get huge amounts of information now with the World Wide
Web. So let\'s put away the idea that they\'re incompetent and pretend
what they keep telling us is true, that largely, they are competent.

We need them as partners. The quality chasm is never going to be fixed
by professionals, it\'s only going to be fixed in partnerships with
patients, and patients when you actually sit down and talk with them.
And it takes them about 6 months to think you\'re serious, because
they\'ve never sat down with anyone that is serious, but after about 6
months they start telling you the truth. And they definitely want to be
our partners, and it\'s actually a good deal for us, it\'s a lot more
fun to practice medicine, as Danny was saying, when they are partners.
It feels a lot less like you\'re carrying them around on your back as a
papoose, but you\'re actually walking up the hill together.

Health information technology, at least anything that\'s going to really
help the patients, has got to work across organizational lines. So these
first forays into personal health records that are information based, I
think they\'re great, they\'ve gotten us to see, to learn some things,
but anyway, certainly CMS must understand this, it\'s got to work across
organizational lines.

And the other thing I\'d like to say is whether we do anything, right or
not, eventually this information is going to get in the hands of the
patients, because the patients want it and the market will do it. I just
hope we give it to them about 10 years earlier than that\'s going to
happen. Because a lot of the non-health care folks who are going provide
this haven\'t got a clue what to do, and if we work together it will be
a lot quicker. This is going to move into this world, and instead of us
being surprised and disintermediated, why don\'t we partner with them?

Slide 4, a shift in focus. I think you\'re starting to hear people say
here, we\'ve got electronic medical records \-- which I call business
medical records, by the way \-- are for physicians and hospital
enterprises. They do a lot of things, but they\'re really not for the
patient. They\'re the \-- they are a document management system, they
are workflow systems, they keep us out of jail or put us in jail,
they\'re at least \-- you know, what you take when you sit down with the
lawyers. And so personal health records actually focus on the
individual, and their network of supporters.

Also really you\'re going to hear me keep saying network, and I was glad
to hear you say that, because that\'s where the strength is. We can all
imagine, we all know, we all have relatives who are incompetent, but
they\'re not incompetent when their son, who is a CPA, sits down with
them and their personal health record, they become wildly competent.

And then the PHRs are the only way they can really become full partners.
We can keep lambasting patients for not taking accountability, but
unless we give them the tools and capability for it, how would we expect
them to be?

So the big idea I think is communities and states, and God knows maybe
the Federal Government, could support standard based PHRs for all
residents. And I don\'t mean that in the legal sense, I mean for anybody
who gets health care in this country. And designed with and by the
patients and controlled by the patients, as Danny was saying, it becomes
a public utility.

And the reason to be thinking about that is so you don\'t have to carry
all those little things when you go to Europe, you know, so you can plug
in. You know, we don\'t want 60 cycle, 50 cycle, 220, 120, to make it
really simple. We geeks can use fancy terminology. You don\'t want a
multi-gauge railroad, you don\'t want a bunch of plugs to always have to
plug in your data. And it\'s not hard to fix, people act like it is, but
it\'s not. It\'s hard to fix between business medical records, it\'s not
that hard to fix with personal health records.

And then once you\'ve got that infrastructure, for God\'s sake let the
market play. When there are single gauge railroads, let anyone build the
locomotive. When you\'ve got 60 cycle, 120 volt, let anyone build
appliances and sell them. But let\'s get the main thing there on which
they build.

If we allow the competition to play at that level, patients are not
going to get what they want. If we move the competition up a level, so
you\'re actually building appliances for an infrastructure, then you\'ve
got something incredibly powerful.

I think that\'s the role of government, to help us set up \-- I\'m not
saying you have to regulate it, but set it up so it can be regulated, so
it can have the attributes of a public utility.

Slide 6. In our community, the patients \-- this was not an enterprise
approach, as you\'ll see in a minute. There were two payers and five
competing organizations who were playing in a pursuit and perfection
project. So we didn\'t go into it looking at it from our perspective, we
simply asked the patients what you want, and then we did it. And the
things they ask for, they named, interestingly, a shared care plan.

So their concept was it wasn\'t theirs, and it certainly wasn\'t the
doctor\'s. It was they controlled it, and they invited anyone in they
wanted, and that\'s the way it\'s designed. And you can go look at it,
and anyone on this panel wants one, I\'ll get you one.

By the way, we gave the source code away, we announced at HIMMS. About
\$2 or 3 million, depending on how you count. The source code is
available for anyone in the nation, anyone in the world who wants it. It
was not meant to be a proprietary effort.

Patient-designed for self-management and for communication. We\'ve got
to quit thinking of it as a record, it\'s very unfortunate it\'s called
a personal health record. It\'s actually a communication system, it\'s
for conversations. It\'s not predominantly for documenting facts, it\'s
for facts that lead to conversations. So it\'s a communication system,
at least as much as it\'s a medical record.

They wanted to invite their providers, their family, their friends in.
And it includes patient preferences, their goals, their plans, their
actions. It\'s linked to Healthwise or other products that one can use,
where they really like that. And it has advanced directives in it. By
their request, legally usable documents, so that when they show up
unconscious you actually know what they wanted. That fact alone, if
widely implemented, would save Medicare and this nation an ungodly
amount of money.

And we\'re certainly committed to standards, I think that\'s another
thing that CMS could do. Anyone big could do it, you\'re the biggest.
Sort of say here are the standards we want. And I wouldn\'t wait 10
years, I\'d fix some standards, current databases. You can add more
standards later, it\'s just another field in a database, let\'s not make
it harder than it is.

We\'re not \-- other people are going to come here with thousands of
users. We started with really sick people with congestive heart failure
and diabetes. The spread has been all worth of mouth or people in the
program, so there are about 900 users now in Whatcom County. But they
actually do use it and their doctors use it, and it\'s accepted
community-wide across multiple organizations, which is no small feat.

So this next slide, #7, was built in 1995 when we started building our
community health record. We \-- some of you may know we have one of the
most electronically integrated communities in America. And you can see,
we thought we were patient­-centered, you see patients are at the center.
Turn to the next slide. This is also circa 1995; we have patients at the
center.

After meeting with patients for few months I realized we didn\'t have
patients at the center at all. We had the object that we move through
our health care, acute care system, at the center. So we were at least
clever there. But we never once ever, ever asked a patient what they
wanted. To say patients are at the center is a little goofy. It\'s like
say the car is at center of the Toyota production line.

When you start asking patients what they want, they start saying wow.
The things in the circle that you\'re looking at are lot more, they\'re
all the resources of the patient. They\'re all their friends, their
pharmacies, their naturopaths, everyone that\'s helping them with their
health care is in the circle they want. That\'s what you can get with
current Web-enabled tools today. It\'s those people that provide the
free care so that Medicare doesn\'t have to. So you want all those
little red circles to show up.

Okay, Slide 10, a shift in perspective towards the patient\'s real home.
There are people that will be mad for saying this, and that\'s okay,
people have been mad at me before. Patients want us to be a part of
their world. Even when we try, we always frame it where we\'re trying to
make them a part of our world.

Concepts like \-- and I understand the good things behind the term,
medical home, but medical home, compliance, good patient, bad \--
patients don\'t use those terms. Sit down with them sometime, you know.
We are a very small part of their lives. Let\'s look at health care and
health care information from their perspective. We\'re all going to take
care of ourselves, you know, our businesses, we\'re going to buy the
right stuff. Let\'s build something that isn\'t built as an appendage of
the professional health care system, let\'s build something that works
for the patients that connect to us. They\'re more interested in getting
well than we\'re interested in making them well, trust me.

Debilitating assumptions. Some of these are repeated, but chronic care,
we tend to think it\'s like acute care. It\'s unrelated to acute care,
it\'s confusing because we\'re using a lot of the same components,
hospitals and so forth. But there is no chronic care system, and there
can\'t be one until you enable the patient.

Old people are incompetent, I already knocked that one off. Hospitals,
doctors and hospitals are the center of health care, I think I sort of
beat that one to death a little bit.

People can get access to the Web. If you\'ve got libraries, they can get
access to the Web. We\'re moving to putting kiosks in all the volunteer
fire stations in our community. It\'s not hard to get \-- there are bank
machines, for God\'s sake. Not that those have Web access, we all know
that the model is there, that\'s a kiosk connected to the internet. This
is not a hard problem to solve, once you start saying what problem are
we trying to solve, making doctors and hospitals more efficient and
solvent, or patients less sick.

Everyone needs to work online. I tell you that\'s certainly not true, I
try not to buy software that makes me work online. You need to design
this so you can work online or offline. You need to design it so you can
your notes on paper and update them when your son comes over, he\'ll
take it back. These are trivial problems to solve, but we get locked in
these mental models that, oh, we can\'t do it unless everyone has
high-speed Internet access. When you give those problems to the
patients, they solve them rapidly. When you leave it in our hands, we
come up with all kinds of reasons not to do it.

Everyone must adopt? From Medicare\'s point of view, if people will
adopt, even 15 percent of people that are over 65, it\'s going to pay
for you.

The ILM is where we started, you can flip through a couple of pages
here. I just want to point down to page eight, Slide 15, that where we
came from are seven organizations and a lot of patients, that\'s where
these ideas came from. And Slide 17, I just have to \-- on page nine I
think is kind of cool. We actually took our vendor with you us, we took
IDX to Boston with the IHI with our patients, because we were so sure
that they wanted to see our medical record.

They sort of \-- we learned to hear this over and over, but they
basically politely declined. They said why would we want to see your
medical record? You don\'t ask us the right questions, so the right
things aren\'t in there, and we\'re pretty sure you\'re not going to let
us share any one we want, so why don\'t you just build something for us.
And they started out a very expensive development platform called
Microsoft Word, and after 6 months we put the stuff online.

We started, as I said, with people with congestive heart failure and
diabetes, they\'re really quite sick folks.

Go to Slide 11. This is a slide from one of those patients, the first
patient ever to speak at the Institute for Health Care Improvement
National Forum. Rebecca Bryson. She was pretty sick.

**[\>\> ROSE MARIE:]{.underline}**

I\'m going to need to ask you to wrap up in a few minutes.

**[\>\> MARC P,:]{.underline}**

Sure. She had four cardiac arrests in one day, she\'s not your average
patient. You can see the burden, communication burden on her on Slide
21. One person would tell her something, everyone else is supposed to
know about it magically, it doesn\'t work.

There are a few slides of real patients, so you realize it\'s not just
me up here. When I get a chance I always have patients come up and talk
instead of me, but you\'re getting me instead today. What you\'ll see is
design features, I think this is the last piece I want to tell you. What
they insisted on and what they got was complete control to access. For
every data element in there they decide who sees it. As much as doctors
would agree with Danny, patients don\'t. They\'re never going to tell
you that they\'re not telling you, they\'re not that stupid.

Audit trails, they want audit trails, they got them. They can see who
has looked at it. Advanced directives. Printing for the refrigerator,
printing for your purse, printing for your wallet. I mean, these little
old ladies that think of their husbands and themselves, carry it around
in their purse. Paramedics love it.

I\'ll say one word about marketing. What we\'re doing is using 822 EMTs
in Whatcom County to market it, and then we\'re going to go to schools
and churches. You\'ve got huge powerful social networks that have
aligned interests with patients. So social marketing is the next game.
The technology is actually in my mind completely solvable. Thank you.

**[\>\> NANCY:]{.underline}**

Thanks very much. We would now like to welcome to the panel for
presentation Craig Carpenter, who is with the Veterans Administration,
and will be talking about MyHealtheVet. Welcome, Mr. Carpenter.

**[\>\> CRAIG CARPENTER:]{.underline}**

Thank you. I\'d just like to thank you for inviting me and thank you for
taking a look at implementing this system. A little about myself. I\'m a
veteran, I served in the military from 1984 to 1994. I have used
MyHealtheVet for the past 2 ½ years.

Let me go through some of the things that I do, the way that I have used
it for myself. The first thing I do is that I use it, I look at it as a
tool, something to help me. It has \-- it\'s set up, it has reminders on
it so that it reminds me, hey, you know, this is 6 months, you need to
go to your dentist, you know, you have a dental checkup. Has reminders
to say hey, you need to go in and, you know, you\'re coming of the age
where you need to have a colon check. Not that everybody wants to get
that done. But these are things that it reminds you to do.

And also the access is so great. Because the only thing you need, as
mentioned prior is basically yes, to have Internet access. One of the
times I had to use it, one of the two times that were very, very crucial
to me, one was I had went to Milwaukee, WI, and when I got there I went
to take my medication, and some party forgot to put it in my bag. I
wonder who that was, even though I was the only one there. But that
person forgot to put it in their bag. So what do I do? I went to the VA
Medical Center in Milwaukee, and they were able to pull up on the
MyHealtheVet. Gave them information which I carried in my wallet that
gave them the Web site, and we logged in, they were able to look at,
because of the way it was set up, they looked at all the prescriptions.
Not only the current prescription, but they were able to look at the
past prescription, as well, the discontinued ones.

So it gave the information \-- all the information they needed in order
to fill the prescription, the medication I needed.

The second time that I had to use it, I went on a cruise and was in
Puerto Rico and it was really, really hot. I suffer from diabetes and
MS, and I had an exacerbation, I had an MS exacerbation. And they have
no idea who I was, or what was going on with me. Again, I carried, as I
said before, I carried in my wallet, just like you would a normal health
card. You know, somebody going to the ER they say hey, you know, show me
your insurance card. So I showed them that, they were able to look up
the information and say well, wait a minute now, he has MS, so it\'s an
MS problem now.

So now they were able to deduce that just by looking at that
information, and it has what your current conditions are, what
conditions you\'re currently being treated for. They were able to deduce
exactly what was going on. Not only were they able to do that, but they
were able to see what was in the last 24-hour period, that I had gone to
the doctor, been able to see the doctor\'s notes. So they were able to
look at the information and make a determination and were able to
treat \-- assist with my problems that I was having. So it \-- you know,
like I said, it has helped me out tremendously.

Now, Dr. Sands came \-- was talking about other tools that you could
work with, that work in conjunction with that. One of the tools that the
VA offers is called Telehealth. It\'s a machine, and it has the blood
pressure monitor hooked up to it, has the weight scale hooked up to it,
it even \-- I can even plug in my glucometer and put that information
in. That information is then transmitted on a daily basis, five times a
day. Whenever I hook up, it transmits the information and it submits it
in.

It is then transmitted directly to the VA, the VA has a section assigned
to that, they then take that information and post it directly to my
medical records at the time it is done. So again, it goes directly.

Now, the other piece to that is that part of MyHealtheVet, there\'s a
self-entered, a self-monitored portion of the personal record where I
can put in additional information, ones that I key in when I\'m not
there, or where I\'m somewhere else, I want to put that information in.
I can take that and I can show it to my endocrinologist so he knows
exactly what\'s going on with my blood sugars, as well as my blood
pressure, and everything else.

One of the other pieces that MyHealtheVet has as well is, it has a
graph, so you can see what the fluctuations are, you can see where you
are and where you stand at. That gives me, as a patient, a little bit
of \-- you know, some of the warm fuzzy. I can see what\'s going on, and
I know what \-- I can understand what\'s going on with myself.

The other piece, as I mentioned before, is on the prescription side.
Now, on the prescriptions normally you\'re given a prescription and then
you have a whole \-- the whole alphabet is listed as, you know, you\'re
taking this drug now. I myself take 17 different medications. And then
when you go in to a doctor they ask you, you know, two questions. One,
are you allergic to anything. And of course that was something easy to
answer. The other is they\'ll ask you what medications are you on.

Let me see, here. And you try to go back in your head, and you can try
to imagine, one, memorizing 17 medications. Two, memorizing the dose of
each medication. Three, memorizing the frequency of each medication. And
then take that and explain that to the doctor, the person or, you know,
whoever is asking you that question.

I don\'t have that mental capacity to remember all of that. I can
remember my Social Security number, I can remember my address, and my
date of birth sometimes. But to have all that stuff and memorize it is
something that\'s a huge task, but it\'s something that\'s very, very
important. And to have access to that information at the click of a
mouse basically and have it pull up, here you go, here\'s all the
medications I\'m on. Or they can look up and say okay, here are all the
prescriptions. And again, they can look at both the current medications
you\'re on, the current active medications, as well as the past. And
sometimes, you know, they keep telling me that past medications has
something to do with it but, you know, I\'m not a doctor, so I\'m not
sure, and I know it is important.

So you can look at that information and all of it is right there. So you
can answer those two questions right up front, and it gives them in
detail the medications, the dosage, and the frequency. So all that
information is right there and readily available.

And then again, as I said before, there were \-- again I\'m from
Maryland, I live in Maryland, but I was able to go to Wisconsin and I
was able to go to Puerto Rico, and because the information was readily
accessible via the internet, it was right there.

So that is it. So I think that after I speak, there\'s one other person
behind me, and that\'s that, you guys can look forward to your break.
But the break is a little bit closer.

So that\'s all that there is, that I have to say about myself. And
again, I\'m very, very \-- as you can tell, I\'m very excited about it.
And I talk fast, I\'m from Connecticut, so you know \-- the speech
speed.

**[\>\> NANCY:]{.underline}**

Mr. Carpenter we would like to thank you for your comments, and
certainly for all of us on this panel I think I speak collectively for
each of us, your story is compelling. And while you may think that\'s
all there is, you really have embodied the patient perspective, and we
all thank you for coming in to do that. And I know my colleagues will
look forward to questions later. And we do have a final panelist.

**[\>\> ROSE MARIE:]{.underline}**

Our final panelist is Jana Skewes, President of Shared Health.

**[\>\> JANA SKEWES:]{.underline}**

Good morning. On behalf of what we\'re doing in Tennessee in health
information technology, I really appreciate the opportunity to take
about 12 or 15 minutes and tell you what\'s happening in Tennessee

I\'m president and CEO of Shared Health, which is a subsidiary of
BlueCross and BlueShield of Tennessee. And for the last year we\'ve
worked with the State of Tennessee with their Medicaid program to
implement a vision of improving patient quality and reducing health care
costs through the use of health information technology.

Now, you know, when we discuss all the complex issues surrounding health
IT, whether we talk about interoperability, then we talked about
portability and privacy, just to name a few, it\'s pretty easy to get
bogged down in what the hurdles might be. And so I thought a good place
to start is to share some success stories, a success story of what\'s
already happening today. And again, this is in Tennessee.

One of our company\'s early adopters is a Dr. Thomas Smith, and he\'s a
family physician from Cookville, Tennessee. He tells a story that we
think is pretty compelling. He talks about getting ready to prescribe a
muscle relaxer to one of his patients, when he had recalled that he had
previously referred to that patient to a neurologist. Now, he did not
recall whether he received any followup information from the
neurologist, so he asked the patient. And he asked the patient, has the
neurologist prescribed any medication for you, and what is that?

As is often the case, even though patients are very competent, this
patient could not remember the exact medication. She knew it was a pill,
she knew it was pink, but she did not know what the medication was. So
Dr. Smith then went into our system and he looked up the medication
history of the patient, and found the specific medication that had been
prescribed, and learned that the muscle relaxer he was about to
prescribe would have had a drug-drug interaction. So he was able to
choose a different medication that did not adversely affect the
patient\'s treatment.

So after this incident, when we asked Dr. Smith, to him personally, what
is electronic medicine all about, he said it\'s really all about patient
safety.

Each year Medicare patients see on average six different physicians who
coordinate their care. And coordinating their care, when the patient
can\'t recall the health details, can be confusing, inefficient, and
unfortunately, dangerous in many instances. So this type of really every
day story helps us remember why we\'re all here doing our part in it,
it\'s about the consumer.

Let me tell you a little bit about our company and how it links into the
consumer. We\'ve built an operational health information exchange in a
little under a year. We began with a mission to provide prepopulated
patient centered health information at the point of care.

We have an agreement with the State of Tennessee to provide health IT
solutions to improve delivery of care to the State\'s population which
is TennCare. We have about 600,000 patients in the system today with
plans to add the other 600,000 in the next few months. We offer our
services to payer population and self‑payer groups. To give you
background of what we do today, we aggregate. We do stay with claims
data. For some of the reasons you heard earlier, we supplement it with
medication history, with lab results and with information from the state
immunization registry to give an electronic record that\'s easily
accessible by clinicians. We\'re adding a consumer view this fall. Such
as lab results, immunization records, allergies and vital signs.
Clinicians are also able to electronically prescribe medications from
the system and they\'re checked for drug‑drug and drug allergy
interactions. Also most recently, Shared Health was awarded one of the
two contracts from CMS to test the feasibility of prepopulating personal
health records with Medicare data.

Let me tell you a little bit about research in Tennessee which is
consistent with what you\'ve heard from the early panelists but I want
to add our facts of the history and the story. In the first quarter
of \'05 we did a random survey of a little over 1,000 Tennesseans to
better understand what we call the electronic medical keeping \-- we
didn\'t distinguish between EMRs, EHRs or PHRs \-- the findings were
consistent with national studies and taught us a few important things.
One is in terms of awareness, less than half of Tennesseans had ever
heard of electronic medical records. Those that were high users of the
system were even less likely some of the preconceived notions those with
chronic care are wired or understand how wired the system is and in our
study we found that actually they were not any more aware of what\'s
happening in the electronic health information exchange than those
without chronic conditions.

There also were a surprising number of consumer misconceptions. Most
respondents believed their health care providers were more wired than
they actually are. Sixty percent thought that their doctors already had
their full medical history on a computer. We know most published reports
say it\'s in the 10 to 20 percent range. Also, over 60 percent of the
respondents thought an emergency room doctor could get immediate access
to their history if they were in an emergency. There were definitely
concerns about security and privacy none of us want to minimize. We also
heard as we heard earlier that a lot is dependent on how we asked the
question. So as we shifted from general questions on privacy and
security and we said do you want your information in the emergency room,
in the case of an emergency, over 75 percent of the respondents said yes
and they felt the privacy concerns were outweighed by their safety
concerns.

Our study also asked consumers whether they felt the quality of care
could be improved, if their health records were securely made available
to the clinicians over the net. Most said they thought the quality of
care would be improve if the were made available. As you might expect,
younger respondents with higher education levels were better able to see
the value of health IT. Another point is only a third of the respondents
today kept a record of either their or their family\'s health
information, even on paper. And our study found that those with chronic
conditions were no more likely to keep a record of their health history
than those without chronic conditions.

So in terms of what we found from the research, 1) consumer awareness of
health IT electronic record keeping and the value it provides is
relatively low. Therefore, basic consumer education is needed for
awareness and eventually adoption to increase. And 2) educational
efforts need to address the misconception consumers have around the role
technology is currently playing or not playing today. And 3), there
seems to really be this ahah! moment where consumers think about their
information, improved access in the emergency room. We\'re starting to
think about how can we extend that initial perception or belief in the
emergency room and help them understand its importance in a number of
settings. So as I mentioned earlier, and I do want to spend a few
moments on this, we began with a strategy to first engage the health
care providers, and I know this is about the consumer, but we really
believe in engaging providers is a critical step in realizing the full
potential of health IT. We have a staff that\'s really devoted to
helping physicians and their staff on the workflow issues, not just
about the technology. Because we believed in Tennessee, even if we got
adoption by consumers of personal health records high, if they walk into
their doctor\'s office and say here\'s my information or my information
is on Shared Health and the doctor says Shared Health who or what?, we
know we have really jeopardized adoption on the consumer side. And so we
had similar findings and consumers trust their physicians. They trust
their hospitals. And we need to first get them engaged. So when the
patients come in and talk with them about their personal health records,
that the physicians are there advocating and supporting what we\'re
doing.

In two months we\'ll begin making our prepopulated electronic health
records available to consumers. We\'ll have a consumer friendly record
with the same prepopulated patient-centered information that clinicians
currently have: demographic information, medical diagnosis and
procedures, medication histories, immunizations, lab results and
allergies. So when this is launched both providers and consumers in
Tennessee will be accessing the same source of data. We really believe
that connecting both the consumers and the clinicians to the health
information is where the ultimate value lies.

As I mentioned a few minutes ago, Shared Health and our team partners
were recently selected as one of the two pilot programs for CMS for
prepopulating personal health records. Part of this initiative, which we
think is very important and what the requirement from CMS is that we map
and translate the data that physicians use into information that is
meaningful and relevant to the patients. So while the source will be the
same, what the consumers view will look different and in some cases will
be translated differently than what the clinicians see.

Let me tell you some more research information. Again, it\'s consistent
but I think it\'s important to understand how the different populations
view what we\'re all trying to accomplish. There was a recent study done
on personal health records by the BlueCross BlueShield Association,
specifically for the SEP program. And approximately 500 SEP subscribers
in five cities from multiple commercial plans and products participated
in the study. The study found that 72 percent of respondents would
probably or definitely use a personal health record. Twenty-eight
percent said they would not. And we think these findings are positive.
In terms of benefits, the study found that respondents most agreed that
PHL was also a place to keep all their health records, convenience.
Convenience was first. Then it followed by more overarching benefits
increased empowerment and control over their health. Finally the study
asked the respondents to rank the top four most value automobile
features of a PHR. In order of priority was number 1, having a medical
chart or summary of their doctor visits and lab results. A summary of
doctor visits and lab results. Number 2, having access to their own
medication history. Back to compliance. Number 3, having access to
wellness information, including immunizations, vaccines and the health
reminders, and number 4 was access to a personal profile: name, address,
and insurance benefits. What we\'re really pleased to find was the
preferences from consumers in terms of the information really closely
match early focus groups that we did in terms of the baseline
information that providers want. So the lists are very similar. When you
say what are the top three, four, five pieces, features you look for.
Physicians was medical histories, lab results matching the consumer
results. Finally the SEP study found consumers prefer prepopulated
records. They can also be manually updated. And not surprisingly
consumers want access control over their personal health records.

So while we\'re excited to be part of the progress that\'s taking place
in Tennessee and also within the private and government sectors, I want
to take a moment and talk about the importance of the behind the scenes
work that must take place for the messiness of information to be shared.
The process of gathering, aggregating and normalizing patient health
data really should not be underestimated, especially when you\'re
working with data from multiple government sources, commercial payers,
PBMs, labs and really the clinicians and the consumers. It\'s pretty
easy for us to get excited and jump right to the desktop and snazzy
features and functions, but really the work that\'s done in the
background to turn data really into something that\'s usable for
clinicians and consumers is not to be underestimated. Also the work that
needs to be done in each of the physicians\' offices in terms of their
workflow should not be underestimated. National data standards are
critical to the advancement of health IT. I know I\'m preaching to the
choir. But as such we support existing efforts such as AHIC and the
BlueCross BlueShield Association PHR project. Standards are really
important, but in addition, pilot programs are as important to really
test the business process of how you share data and how you protect the
privacy of that data.

In terms of all lessons learned, and I have two key lessons I\'d like to
share in closing, then we\'ll open it up for questions. Shared Health,
and our parent company, again which is BlueCross, and the State of
Tennessee, have been at the forefront of leveraging health information
in our State. We\'ve learned a number of lessons, two critical lessons.
One is that public-private partnerships can get this done. And really
public-private partnerships are needed to get this done. Our first
customer was the Tennessee Medicaid program. They were really our early
adopter for our clinical health record, our system. But in addition, we
have the backing of BlueCross, the largest private payer in that market.
We believe it\'s the partnership with the state through Medicaid and the
BlueCross plan and now a pilot program from CMS that\'s allowing us to
see how all those forces come together.

The second thing is that, and I\'ll speak for our parent company CEO,
she would say that making structural changes to the health care delivery
system requires a good deal of risk taking. Health plans must be willing
to take a nonproprietary approach to sharing information. It\'s why you
see me here as Shared Health not as BlueCross BlueShield. We applied
again both AHIC and BlueCross\'s commitment to working with their member
organizations to make sure that that data is shared in a nonproprietary
fashion.

So in closing, we strongly support this Workgroup\'s recommendations to
develop common nonproprietary data standards for health IT. We also
belief that the goals of true empowerment and transformation can only be
achieved from both a clinicians and that consumers are engaged and
connected, sharing information from a common data source. And really
from our perspective, there are important roles for everyone in the
health care system to play. We really believe we have a shared destiny
in improving our health care system. Medical errors, inefficiency,
rising costs don\'t affect any one stakeholder. Consumers, clinicians,
employers and insurers all share the same system. And we\'ll all benefit
from further advances in the health information infrastructure, just as
we\'ll all lose ground the longer it takes to move to a digitized
system. So again we commend the Administration, the Community, the
Office of the National Coordinator for their work in advancing the
mission of health IT. We really appreciate the opportunity to be with
you today and I\'d be happy, like all the other panelists have said, to
answer any questions you may have.

**[\>\> ROSE MARIE:]{.underline}**

Thanks so much for your compelling remarks and your reflection and
we\'re happy to hear about the public-private partnership and we do have
several questions. We\'ll begin to my left.

**[\>\>:]{.underline}**

I have one question and I\'d like two panelists to answer but first I\'d
like to thank the panel for your time and your excellent presentations.
The information was great. I\'d like to concentrate on the area of scope
and I\'d like to address my question to Mr. Carpenter and Dr. Pierson.
And my question on scope of standards is from the patient\'s
perspective, Mr. Carpenter, if there were a nationwide standard for PHR
as a patient and it was a default category of information about your
personal health care and your information, what would you feel
comfortable with in an electronic format being released to anybody?

**[\>\> CRAIG:]{.underline}**

The things that I guess would impact me the most would be the
prescription information. The current prescription information. The
medical conditions, of course, that I\'m treated for, and the tests, the
last tests that were taken, for instance, the H1C test, the results from
that test would, I think would be critical. Those would be the three
things that would be most important to me, then I would think, I
wouldn\'t mind sharing.

**[\>\>:]{.underline}**

Dr. Pierson, as a clinician, for a PHR to be useful to you, what minimum
amount of information would you need?

**[\>\> MARC P.:]{.underline}**

You said would be comfortable being released I would say our patients
would be in control of exactly what\'s released to each individual so no
one is comfortable releasing anything to everyone. So with that said, I
think our experience mirrors what is said up here. Physicians, and
we\'ve done surveys several times. I can\'t remember the order. It\'s
either labs first or meds first or the other way around, but as an ER
doc it\'s really clear I want all the labs, not the meds, the labs. I
think that\'s far and away most important.

**[\>\> ROSE MARIE:]{.underline}**

Any other questions? Ross Martin?

**[\>\> ROSS MARTIN:]{.underline}**

I have two questions but I\'ll ask one and if there\'s time if I could
circle back around. This is for you Craig and also one with the consumer
experience. I divide the world into two groups, one that has owned a
TiVo and those that don\'t. And my experience with that if you own one,
you understand why they change your life. And if you don\'t, you can
explain it to somebody in a very accurate way and they don\'t get it
until you start hearing the passion about it. Once they see one, then
they become equally passionate and almost evangelical about it. So my
question about the survey information you have and your experience, have
we seen examples of surveys done with people who are not naive to PHRs.
Ones like you Craig who actually used it and they get it and if you do
have that information, you\'ve already answered one question about
what\'s most important to you. But the second question would be, what do
you want to see next? Where does this need to go so you can see it\'s
fully what you need to be the life long personal health record that
serves all your needs? So that question could be for Mark and Jana.

**[\>\>:]{.underline}**

I\'m a non-TiVo owner.

**[\>\> ROSS:]{.underline}**

I\'ll talk to you later about that.

**[\>\> CRAIG:]{.underline}**

But I understand, for me personally, and through my experience, I
interact with a lot of different vets from different areas. The Korean
War, Vietnam and the current war we\'re in right now. And what I\'ve
evangelized to them is how great this thing is. And I\'ve actually
talked to a lot of people into it. I talked to a lot of my current vets
to show how easy it is to sign up and enroll in, getting the
prescriptions online, because a lot of times, you know, you go to
experience a lot of vets have is that they go and one gets the
prescriptions to get it filled you have to go and sit there and wait.
And it\'s, you know I\'m not exaggerating but it\'s normally a 5- to
6-hour experience to get one prescription filled.

Whereas, by signing up and getting the prescriptions online and being
able to get that you know the next day or by 2 days \-- by within 2 days
you have the prescriptions delivered to your home, they are actually
able to see now this is a great thing. Again, the experience I had as
well as I was able to show and explain to other vets that we were able
to take that information and keep it in your wallet and have access when
you go to the ER. Again, you can have that information so that if you
can\'t communicate, they have something there, because again as I said
before, the first question that a health facility asks is, you know,
where is your medical card. What\'s your ‑‑ show me some insurance
information. And if you have that information there it\'s like, well,
now, it seems as though, you know, that seems to be the first question
is medical, you know, where is your medical card and it\'s not what\'s
wrong with you. It\'s, you know, do you have insurance.

But here you\'re able to give them that information and say well now
let\'s concentrate. Before they get to the medical card, here is some of
my medical history and they can see exactly what\'s going on with me.
And I guess what I\'m saying is that basically is that through time and
through, through, by word of mouth and with the doctor\'s input as far
as saying, hey, here\'s something that\'s available to you and letting
the patients, such and such know that this is out there, they can then
take advantage of that. And the comfort level, you know, with that would
expand more as time goes on. I don\'t know if ‑‑ right now especially as
a vet, our view, we talked about security and a lot about the trust.
I\'m not sure, I don\'t think anybody here has ever heard about a laptop
being stolen with names, 26.5 million names, information being given
out. But, anyway, so for us it\'s really, really important to have that
trust or to know that, you know, this is not just going to slip out and
not just anybody can go in and see this information. And I think that ‑‑
and I don\'t know what one thing you can do to impart that trust on
someone. Because there\'s a lot of issues going on with every individual
that they may not want everyone to have privy to. One of the things that
Dr. Sands had questioned was, wait a minute, I don\'t necessarily want
everyone to know this part of what\'s going on. I don\'t want everyone
to know, and again, I\'m just going to use as an example, I don\'t want
everyone to know I have an ED issue here. And I don\'t want them to know
exactly whether I\'m taking Viagra or Cialis, that\'s not their
information. I\'m here because I got a sprained ankle. And they don\'t
need to know that information right now. That\'s not something I want
shared. So it\'s a trust issue. It\'s like, I don\'t know you. I don\'t
need to give you that information. I\'m here for my ankle, not for
everything else.

**[\>\>MARC P:]{.underline}**

Quickly, on survey data you asked do we have information. We have not
gone out and asked in a survey for features which was the next feature.
We have our patient advisory committee that we meet with monthly and the
next features they want in ours is labs online, which we\'re going to do
this summer. The other thing that they want is physicians to look at it.
And a couple of people pointed out here, and if I were giving what I
think is the most important talk about PHRs, it would be about workflow
integration and how we\'re going to do that technologically, because
that\'s a technological problem. But they want their doctor to look at
it. I know doctors aren\'t going to look at it until you have tools to
than integrate with workflows. And if you add strategic payment for the
things that the payer wants the doctor to look at, then you\'ve got
something.

**[\>\> ROSE MARIE:]{.underline}**

There\'s a follow-on question from the Co‑chair, then right to
Mr. Safran.

**[\>\> NANCY:]{.underline}**

Just to follow up. In your survey you suggested people wanted those
items that we\'ve talked about. But things like, for example,
medication, prescription renewals and the ability to order
prescriptions, get medications delivered to the home, strikes me as one
that people would have wanted if they had known about it. And so were
they selecting from a list of things or were they, you asked them for
the things they could think of? Because people only think to ask for
things they think of, I guess.

**[\>\>MARC P:]{.underline}**

When Walkmans are out, what do you want for electronic music, they say
smaller Walkmans not iPods. I want to add on the association, when
they\'re given a list of choices, I\'m assuming messaging and
communication back with their doctor is one of the choices. I\'m looking
over at ‑‑

**[\>\>:]{.underline}**

Yeah (inaudible) do that survey in our Federal employees program
department and they did have a list of options to respond to and they
were able to expand on others if they wanted to but most of them
responded to those lists.

**[\>\> ROSE MARIE:]{.underline}**

Thank you. Then to Charles.

**[\>\> CHARLES:]{.underline}**

I wanted to thank the panelists. It\'s been a great panel with a nice
spectrum of perspectives. I want to go back to Dr. Agarwal and something
she said early on in her testimony which was quite striking. I wonder if
you might advise the working group and then, hence, AHIC what we might
do. If I heard you correctly you said it would take about ten years to
know the value of the self‑outcome of having personal health records.
Seems to me if we\'re trying to encourage the nation to adopt a
technology which has a cost, that 10 years is really too long to know
the value. So I was wondering, one of the things we potentially could do
is recommend to the Secretary that, you know, randomized control,
multicenter trial, this stuff gets done. What would accelerate how we
would understand better the value of this? Because I think one of the
issues of adoption and getting people to pay and putting investments in
it, we\'re talking about potentially hundreds of millions of dollars on
a national basis, if not more than that. Maybe you and the other panel
members might respond to how we could know the value of this in a way we
could accelerate that 10‑year window, if you\'re right that\'s probably
too long. That time frame.

**[\>\> RITU:]{.underline}**

Thank you for the question let me start by saying the 10‑year estimate
is my most pessimistic estimate when I\'m not feeling too good about the
world. But essentially what I was trying to say is exactly what you
described and that is we don\'t have enough controlled experiments and
studies that would allow us to do these random assignments and these
randomly controlled projects where we could actually draw a very
distinct connection between the use of a personal health record and
improvement in some medical outcome such as a hemoglobin count.

I would say it would take anywhere between 3 to 5 years to actually get
some real data that is compelling enough to be able to make strong
claims about value. But meanwhile we can look at findings from
technologies in other industries such as the use of ATMs in the
financial services industry to see what kinds of productivity
improvements those have yielded. And clearly the personal health record
is very, very different from the use of an ATM in the financial services
industry. But we might be able to at least craft some messages for the
public about value. But I think fundamentally your observation was very
true that I would personally like to see a lot more effort than funding
go into projects that would allow for randomized controlled studies of
PHR value, and I haven\'t seen that happening to the extent that I think
is necessary.

**[\>\> ROSE MARIE:]{.underline}**

Dr. Pierson.

**[\>\> MARC P]{.underline}**.:

That\'s a great question. And I hope you do attach some learning to
whatever we recommend to HHS. I would suggest, though, that we don\'t
try to do learning about hearts without lungs. I mean, there\'s a system
here. So PHR alone isn\'t going to do much. But if you can stimulate
some pilots and some research around PHRs with workflow built in, I
think you\'ll really find something that saves a lot of money, and
there\'s an example out there in the State of Washington that\'s been
studied up one side and down the other which is the COE project which is
for managed State industrial. It\'s saving the State of Washington
millions of dollars and it works across now 16 counties, and it is my
model. I\'ve shown CMS this stuff. And it\'s been researched and
continues to be researched. So it may be a way to show them what you
want to do.

**[\>\> ROSE MARIE:]{.underline}**

Thank you for the questions. I do have a question immediately to my
left, Susan.

**[\>\> SUSAN M.:]{.underline}**

Again, I\'d like to thank the panelists. What I\'d like to explore a
little bit is in connection with the Tennessee example, that was a
payer‑based system which wasn\'t on the list of the most trusted keepers
of the personal health record. So I was interested in knowing where
payers fell within the studied list of trusted sources and whether you
found that that was, whether that, your acceptance levels might have
been affected by that and also from a payer‑based system we had heard
earlier about deficiencies in claims‑based data as being a totality
populater of this type of information. Have you found those gaps to be
problematic, and if so how are you filling those gaps?

**[\>\>JANA:]{.underline}**

I\'ll answer the second question first and then the first question
second. In terms of gaps in data. We knew out of the gate that just
claims data for all the reasons mentioned would not be sufficient enough
to really derive the physician adoption. So we from the beginning have
supplemented that, where we get from the PBMs the medication histories,
where we get from the labs. Now it\'s not 100 percent at this point but
where we get lab results, and for the children we get from the state
immunization registry information on immunizations. And we also do have
a component where the physicians or the staff can enter in vital signs,
blood pressure, et cetera. So we have out of the gate supplemented that
information and really provided the claim base as the longitudinal view
that connects all of the dots, and then we\'re going through based on
feedback from physicians and supplementing that with the deeper
information, again labs and pharmacy. I would say without that
supplement information, we would really have difficulty with the
physician adoption. With that information as a supplement, we\'ve had
terrific physician adoption. In terms of trust, our first name for our
product was Community Connection. We had terrible consumer backlash.
They don\'t want this information shared in the community. What are we
thinking. We actually have changed it to Clinical Connection, because,
again, if it\'s information that their doctor is looking up, their trust
levels skyrockets. We\'ve had to do quite a bit of education and PR
around the fact that this is independent of payers. It\'s independent of
the payer as an organization. So there\'s been a tradeoff of
jump‑starting it, getting the information out there, getting good
adoption from physicians and at the same time working back with the
consumers to help them understand the safeguards we\'ve put in place so
that they know that both their employer and their payer do not have
access to this information.

**[\>\>ROSE MARIE:]{.underline}**

Other questions? We\'ll come back to you.

**[\>\>:]{.underline}**

I just had a question. There were things that came out not understanding
what a PHR is. I understand the value that it will take time to see a
return on the value and do studies but this Workgroup and the American
Health Information Community is looking at PHRs, the one thing you
don\'t want to do is put something out there that doesn\'t get used
because you don\'t see the value or adoption. Are there any
recommendations you would have for us as to things we need to do in the
consumer education, even the provider education, because I think we\'ve
heard from many of you that the two go hand in hand, that we can do
whether it\'s education or outreach that would help get information into
the public about what PHRs are now and I guess building on that we know
there\'s no common definition, there are multiple definitions. Do you,
and I\'ll look to any of you that want to answer, see any value in
trying to commonly define what a personal health record is?

**[\>\>:]{.underline}**

I think it would be important to agree on a core set. I understand it\'s
a illusive concept and one doesn\'t want to define it too strictly at
this point. But I think it should be a core set of features and
functionality that could be communicated clearly to the public that
everybody agrees should be a baseline component for any personal health
record. And building on that as the technology evolves and usage evolves
you can have more components added on.

**[\>\> ROSE MARIE:]{.underline}**

Thank you. I would like to go to Theresa who also had a question.

**[\>\> THERESA:]{.underline}**

Ms. Skewes mentioned that patients want prepopulated data that could be
used as a baseline but then had the ability to edit that data. My
question is when you integrate what we call gold standard data and
self‑entered patient data, how would you propose ensuring the validity
of that data?

**\>\> JANA:**

We\'ve had to and we\'ve heard from physicians what\'s most important is
that we identify the source of that data. So we\'ve had to use, from a
functionality and how it\'s viewed, had to make sure that it\'s clear,
you know what\'s the patient\'s self‑enter data and what\'s coming from
these other sources. And then if the patient disagrees with the
information from those prepopulated sources, we have a mechanism in
place where they get to dispute that information and we flag that in the
record. So we\'ve had to identify the sources of the information so that
the physicians when they\'re using it understand, have a spectrum of
understanding what the quality of that information is.

**[\>\>:]{.underline}**

Thank you.

**[\>\> ROSE MARIE:]{.underline}**

Robert.

**[\>\> ROBERT:]{.underline}**

I echo my colleagues in thanking the panel. As the committee thinks
about how we\'re going to roll this out and how it can be effective,
I\'m thinking back to what Dr. Sands said and Dr. Peterson and certainly
with Mr. Carpenter, that we need the TiVo users, we need the motivated
folks to share their stories to utilize the system and then get the word
out. And so I guess my question for Dr. Agarwal, I was struck by having
a chronic illness was not a predictor of PHR use. I wanted to flesh that
out a little bit because we\'ve got to be thinking about the audience to
reach. And I would have thought that folks using the health system
constantly would be very motivated to pursue a PHR.

**[\>\>RITU:]{.underline}**

Yeah. And my explanation for that surprising finding is that they don\'t
see the value in it just yet. So you need those compelling stories, the
big billboards that say I was in Beijing on vacation and I had to be
taken to the emergency room and look what happened. And this is a true
story. It happened to me, which made me passionate about personal health
records as Ross said. I don\'t think we\'ve seen enough of that public
information campaign. We need, you know, a couple of studies that could
say if you have diabetes and you use a personal health record in 12
months your BMI will show this kind of improvement. In 18 months it will
show this kind of improvement. So any data we can draw the public\'s
attention to would be useful and particularly this kind of population is
who we want to reach.

**[\>\> ROSE MARIE:]{.underline}**

Susan.

**\>\> SUSAN:**

Thank you very much for your work. Quick question. We\'ve talked a
little bit about who the early adopters on the patient side might be. Is
there other insights on who the early adopters on the physicians\' side
might be or do we have to make different recommendations according to
the types, we have a generalist and specialist, those kinds of things
and probably Dr. Pierson and Ms. Skewes or whoever wants to answer that.

**[\>\>MARC P.:]{.underline}**

Hard question to answer. My typical answer with physicians is if it
makes it their life easier, meaning you\'ve figured out the workflow,
and it helps them keep their patient healthier, and I don\'t see another
cut. I think the biggest impact would clearly be with primary care; and
probably you figure out your cardiologist depending on what, your
physicians based on ‑‑ that was a slip, congestive heart failure and
diabetes, that\'s who take care of that, where the money is. That\'s how
I would focus.

**[\>\>RITU:]{.underline}**

I need to say one thing here. This actually goes to an earlier question
by Ross. We did sample both clinicians and HIT stakeholders and what we
call the general population, but our general actual population had
access to Internet so we\'re excluding a small population. But what
we\'re finding is there\'s distinct differences between the ways HIT
stakeholders, clinicians view the use of personal health records and the
way the general population does. And it probably all translates back to
education about what a PHR is and does. But to answer your question, the
things ‑‑ I\'m not sure if you were saying use in their practice or use
individually for clinicians.

**[\>\> SUSAN:]{.underline}**

In their practice for their patients.

**[\>\>RITU:]{.underline}**

We didn\'t specifically look at that. But we did look at use
individually by clinicians and their perception and attitude is far
different than what the general population is.

**[\>\> SUSAN:]{.underline}**

Thank you for your questions and answers I have a question to my left.
Then I\'ll come back to the right. I\'d like to go to Marc for a
question.

**[\>\>MARC B.:]{.underline}**

(Inaudible) thrown up as a major barrier to patient and family caregiver
acceptance of electronic personal health records. I heard a theme going
through a lot of the comments I want to test. That is that it\'s been
our perspective at the National Health Council that at least people with
chronic conditions they want to understand the level of their control.
The level of integrity in the electronic security, and then they want to
make a decision based on balancing the potential benefits they can get
from this electronic personal health record and the risk. And when much
of what we\'ve been discussing today is explained, overwhelming support
seems to come out in favor of electronic personal health records. I want
to test that assumption with all of you, if I could.

**[\>\>:]{.underline}**

I would suggest that patients do do this privacy calculus as you
described it. They weigh the benefits against the risks. If they can be
assured it\'s a secure environment and again at the end of that day
(inaudible) their health they\'re willing to relinquish a certain amount
of information.

**[\>\>:]{.underline}**

Also to add one particular comment to that. A lot of the research
you\'re probably referencing about community polls and nationwide
surveys if you look at the way they ask that question, are you concerned
about having your medical information online and access to everyone,
very few people that will respond. So take that with a grain of salt
too.

**[\>\>:]{.underline}**

I would add to your list of things that give them comfort or assurance,
which is also they want to know who\'s looked at their information. So
if they are comfortable with your audit trail and your disclosure, they
at any time know who has looked at their information, which they can\'t
do today in a paper system, their acceptance goes way up.

**[\>\>:]{.underline}**

And your articulation matches what we hear. So I think you\'ve got it
exactly right. Our patients wanted an audit trail but not for security
issues; they wanted to know who had looked because they wanted to make
sure people were playing.

**[\>\>:]{.underline}**

This is different but basically everything is the same, the feeling is
the same with what you just said. Who is looking at it why are they
looking at my information. I didn\'t go to them. To me that would be an
invasion of privacy you have no need to look at my information, I
didn\'t say you could look at my information. And then again at the same
time, though, when I go to a doctor I want instant gratification. I\'m
going for this reason, I want an answer, after the appointment is
complete. So you know that\'s what I want, an answer and that\'s why I
go there.

**[\>\>]{.underline} ROSE MARIE[: ]{.underline}**

Thank you. I have a question to my right.

**[\>\>:]{.underline}**

I heard a lot about the clinical use of information and the
communication of clinical information. Is financial accountability for a
patient, the management of their costs ever, is that a driver in any
way? I didn\'t see that? Some of the ‑‑

**[\>\>:]{.underline}**

That was actually on our list the same with the BlueCross survey. We
provided a list and they also had several other categories where they
could fill in, but the financial aspects of it came in much lower than
the clinical aspects.

**[\>\>:]{.underline}**

Thank you other questions from the panelists. Lorraine.

**[\>\> LORRAINE:]{.underline}**

This has been very instructive. We\'re excited about the pilot we\'re
working on with Shared Health and from the (inaudible) project. I think
what\'s interesting about Shared Health is you have married up the
health plan provided data with the provider access to it. And I wondered
because it\'s a Medicaid based program, if I understand it properly,
what does happen when an individual goes into either a self‑pay
condition or another health plan?

**[\>\>JANA:]{.underline}**

We are adding populations throughout the year. So today if they go off
of Medicaid to another carrier, let\'s say, we can give them a hard copy
of the report when they leave but there\'s no interoperable solution for
what they go to. Next is coming up BlueCross commercial. That will help
as they move between Medicaid and commercial. And we\'re also working
with other payers in the state. So we don\'t yet, until we get all the
payers in the system, if they move outside the payers in our solution at
this point, they\'ll have to take that information with them and
populate it into whatever that payer offers.

\>\> One other point I\'ll make on that related one of the survey
questions we did have was what would be one of the key drivers and it
was incentives, financial incentives, but not financial part of the PHI.

\>\> Let me ask the panel one last question, perhaps starting with
Mr. Carpenter. We\'ve talked a little and heard a little bit about from
Dr. Sands about the issue of health literacy and whether the information
in the record is in fact translated in a way that it\'s useful. I don\'t
think you have any problem with understanding the diagnoses and things
in your health record, but you talked to a lot of veterans. I wonder if
you and the other panelists could comment on the issue of whether in
fact the information in the systems we currently have is provided in a
way that is understandable and useful to patients, the medications
clearly I think are, but things like diagnoses and information from
visits.

**[\>\> CRAIG:]{.underline}**

Again from my personal experience, a lot of the information,
prescriptions and diagnoses and everything else, they\'re very technical
terms. You know again going back to the doctor we have someone who has
hypertension, it doesn\'t compute unless you know it means high blood
pressure. So sometimes in most cases you just need to dumb it down a
little bit. You know to be able to translate that information. I\'m not
saying that everybody is dumb, but sometimes the terminology is, the
medical terminology is not something that people use every day. If
someone says, "I see you\'ve got rhinusitis," you would say, "I don\'t
know what that is. I\'m on this thing. I don\'t know what that is." You
got a runny nose. But again, you know, again a lot of the medication a
lot of the terminology is medical terminology and a lot of times when
they see that information they\'re like well, I don\'t understand, and
some of the codes that are used in association with that, with some of
the number of health issues code that\'s assigned to an issue code.
People say I don\'t know what XICC is, it\'s foreign to me but it\'s
something I have access to it. I can read it. The same with the labs.
It\'s okay I see H1C, but I don\'t know what each column represents
without the doctor explaining it to me.

\>\> And how are you getting that in the, in a health event system, do
you think it\'s adequately presented and do you get adequate
information?

**[\>\> CRAIG:]{.underline}**

Not by looking at it. I have to go and ask. And again, it rolls both
ways, it\'s good that I have to go ask but it\'s bad that I have to go
ask. I want an answer but now I have to wait to get an appointment to
get an answer on the stuff I\'m looking at because I don\'t understand
what this is.

**[\>\> THERESA:]{.underline}**

I think I can clarify that. The (inaudible) is in the pilot system and
national system when we release test results and progress notes all the
health literacy will be addressed in that version.

\>\> Dr. Ross Martin had a follow-on question.

**[\>\>ROSS:]{.underline}**

To what you said, this comes out of the NHIN forum that was held a
couple weeks ago and I was the discussant for the consumer systems
breakout. One of the things that came out was this conversation about
whether or not the primary purpose of the PHR is to provide clinicians
with my personal health information that\'s useful to them versus
something I can look at and have, you know, you call it "dumb down," but
I would say appropriately presented at a patient level at my reading
level, at my knowledge level so that I can know about myself.

And we want both things to come out of this clearly, but as a
prioritization of those two things, what\'s most important to you as a
patient that your doctor, that you be able to share this with a doctor
that\'s taking care of you or another health care provider at the point
of care and say help me with this, or that you get an interpretation of
all the stuff that\'s in there.

**[\>\> CRAIG:]{.underline}**

You know, as a patient, I am first. I want to know what\'s going on. I
need to understand what it is. You know, that\'s more important to me as
a person. Again, it\'s the PHR, it\'s something personal to me so I need
to understand it. And then I can take and inquire with the doctors here
we go, because that\'s the way it works, but I need to know that you
know that I understand what\'s happening, even though, again because it
would give it, as with other cases it will give a little more of a sense
of urgency for me to react to it because if I just see hey it\'s a bunch
of stuff I don\'t understand. I\'m not going to act on it.

\>\> Thank you for the question, Ross. Thank you for the answer.
Panelists I have to say to each of you that your presentations have been
outstanding. They\'ve been enlightening. I would also like to thank you
on behalf of the Consumer Empowerment Workgroup for understanding and
appreciating and the work that you\'re doing and that you\'ve reflected
to us today. The patients are indeed competent. The patients do indeed
want to be your partners in the work that you are doing and Craig to
your point we need to keep patients first as we move through the
process. So thank you all for being here. The panelists and to our
guests here and to those who may be on the phone. We\'ll now begin a 15
minute break and we will return shortly after 11:45. Thank you.

(Recess taken at 11:18.)

Please stand by.

\>\> Ladies and gentlemen, I\'d like to ask if we can take our seats and
get started.

I\'d like to thank all of our committee for being in place and certainly
we want to welcome Jane to our speaker\'s panel as well as Greg and
hopefully we\'ll be joined also by our other panelist, Kathleen Krantz.
And Jane, we thank you for being in place and ready to give your
presentation. The panel that we\'re now going to hear from is comprised
of payers and purchasers and you are Part 1 of that panel. We will have
three additional representatives from the same community. So thank you
for being with us. And we\'d now like to recognize Dr. Jane Barlow with
the IBM Corporation. Thank you, Jane.

**[\>\> JANE:]{.underline}**

Thank you, I\'m pleased to have the opportunity to speak before this
committee today. I\'m a physician. And my background is in occupational
medicine, population health and business administration. As well‑being
director for IBM\'s health care integration and performance, I have
responsibility for driving IBM\'s clinical quality programs, wellness
and integrated disability to our over 500,000 beneficiaries in the
United States.

The IBM Corporation spends over \$1.7 billion on health care in the U.S.
each year. Today I\'m going to talk about our experience with the
patient centered approach to health and health benefits. I\'ll start
with the personal health record and then put that in the context of our
broader consumer‑centric health programs and end with some thoughts
regarding the promise of personal health records in the context of an
electronically informed medical environment. IBM\'s strategy for health
benefits is simple. We focus on healthy people for high performance.
This strategy underscores investment in health to realize the
productivity and innovation potential of our employees and the personal
health record is a very important piece of achieving this goal.

In 2005, IBM announced it would provide electronic personal health
records as a part of our commitment to better health for our 135,000
U.S.‑based employees. The personal health record includes health data
from two sources: The employee and claims data. To set up the personal
health record, employees enter information in a secure Web site. They
input such things as their medical conditions, allergies, medications
and their doctors. And earlier this year the personal health record was
enhanced to automatically import medical and prescription drug claims
history. Privacy and security are key requirements for the personal
health record. IBM doesn\'t host the personal health record, we\'ve
engaged a third‑party to provide this service for us to ensure the
privacy of this health data. Employees can print the information or
e‑mail it to the provider of their choice. The ultimate goal is to
enable all types of health information to flow into the record to form a
comprehensive portable longitudinal portrait that the patient can access
as they desire and share with their provider when they choose. Over
65,000 IBM employees have created a personal health record to date.
Those records contain over 1.4 million data points. It\'s important to
note we\'re not creating new information. The carriers have always
collected claims data. It\'s how claims are paid. But the personal
health record offers our employees a single integrated view of their
claims history, many for the first time.

The personal health record is the cornerstone of our health management
center, a broader effort to integrate health resources in a
patient‑centric fashion to foster consumer engagement and improve
health. The health management center is the central hub affording
employees to an access of health content, tools to support health care
decisions and wellness programs. It\'s also the platform for our health
risk appraisal, targeted messaging and referrals to other benefits
programs. Each entry into the personal health entry record itself, when
it makes sense, is already indexed or linked to personally relevant
information, programs and tools in the health management center to help
each employee take better control of their health. It also includes a
feature that translates complex medical terminology into laymen's
language. For instance, angina becomes heart pain. This broader personal
health history empowers employees with the necessary information to
actively manage their health and health care needs they are able to have
a more collaborative relationship with their physician that extends
beyond that day\'s illness to address the most important health needs
for that individual. This informed relationship with their provider is
critical to improving health care quality and managing costs.

To put IBM\'s experience with personal health records in some context, I
would like to describe our broader efforts on improving employee health
and reducing costs. That backdrop, in fact, is how we progress to offer
the personal health record to our employees.

In today\'s information‑rich, consumer‑driven environment, we see
patients seeking greater control over their health much as they have
taken control over their finances and entertainment, including TiVo.
Each of us wants to apply greater knowledge to improve their health and
manage their costs. As a result of our consumer centric health programs,
IBMers are healthy and have lower health expenses than others in our
industry. We have demonstrated that information-rich, patient-centric
wellness programs are not marginal benefits, they are good business.
IBM\'s employee injury and illness rates are consistently half or more
lower than our peer industry levels. We have documented significant
decreases in the number of health risks among IBM employees as a result
of participating in our wellness initiatives. IBM\'s disease management
programs have demonstrated a nine to 24 percent reduction in emergency
room visits and a 13 to 37 percent reduction in hospital admissions,
resulting in an overall 16 percent reduction in medical and pharmacy
costs adjusted for medical trend over a 2‑year period.

With the health improvements, we\'ve seen cost benefits. IBM health care
premiums are 6 percent lower for family coverage and 15 percent lower
for single coverage than industry norms. Our employees benefit from
these lower costs as well. They pay 26 to 60 percent less than industry
norms. And IBM health care premiums have been growing significantly more
slowly than the U.S. health insurance premium. The health improvements
and cost reductions are as a result of 40 programs focused on employee
well‑being. In total, our well‑being programs drive over \$1 million in
annual savings.

However, these programs have limits. They rely on retrospective data
and, in most cases, patient self‑selection. Prospective health care
involves collaborating with the employee in a more coordinated fashion
to prevent health care problems, in effect, heading problems off before
they occur. IBM is developing patient-centric programs that are doubly
proactive. They both reach out actively to a wider range of employees
and provide personally relevant actionable information to help them
anticipate and manage health risks. The personal health records that we
are providing to all of our employees in the U.S. are a prime example of
this patient‑centric approach. When an employee first goes to the health
management center they are offered a financial incentive to complete a
health risk appraisal, develop a personal preventive action care plan
and identify quality hospitals in their area.

The process surveys a range of issues including exercise level, family
histories and cholesterol control, if applicable. And based on the
results, an IBMer can subscribe to receive expert information, articles
and advice on how to reduce their health risk. It identifies eligibility
for additional benefits and services such as disease management and
refers employees to these resources. Decision support tools for drug
interactions and hospital quality and leap frog results, provide
individual support for optimizing benefits, quality and costs.

For IBM, the health management center and the personal health records
that we provide our workforce are an investment we recoup in improved
employee health and productivity. For individual employees, the
incentives we provide to take the assessment or track their self pace
exercise regimens are essential to helping us capture these business
benefits.

Personal health records and the health management center are part of a
much broader vision with national reach and global promise. IBM hopes
the personal health record based on standard electronic formats that
insure the security and privacy of patient information will be
integrated into a vast array of additional health care data for each
employee to form a catalyst for the electronic exchange of health
information.

IBM is working with other technology companies to develop the National
Healthcare Information Network. The objective is to build a prototype of
a health information infrastructure for a vast electronic health record
system for all Americans that will create the seamless interoperability
to link the medical records of every individual.

This future electronically-informed environment will drive obtainment of
several critical goals for improving health. First, it will equip
providers with the comprehensive information and tools they need to
deliver the best health value focused on the most important health
issues for that patient across the continuum. Second, it will transform
patient ownership and drive engagement in health improvement through
transparency on quality and costs and real time feedback on health
status. Third, it will enhance research, rapidly accelerating the
evidence for effectiveness of medical treatments, and provide real time
insights into population health. Finally, it will eliminate waste by
preventing medical errors, reducing redundant tests and streamlining the
Byzantine payment and administrative costs and processes in health care
that affect so many Americans.

As I close, let me give you an example of feedback I received from a
happy employee. This employee reported suffering from depression for
most of her adult life. As a result of participating in our disease
management program, she was able for the first time to work with a
provider who had a comprehensive view of her medical history through a
personal health record and look at that in addition to other personal
factors. They were able to identify a successful treatment plan for her,
and she reported that this had totally changed her life and for the
first time in 18 years she felt fully alive and productive.

My hope is that every patient would have this kind of health care
experience. In summary, personal health records will drive a more
innovative efficient patient centric system that\'s universally
accessible. Personal health records can be an important part of a
comprehensive standardized infrastructure for the electronic exchange of
information. One that enhances the ability... (lost audio).

**\>\>GREG HEASLIP:**

...PHR is available through a secure Web site hosted not by PepsiCo but
by a third party vendor. Along with other responses such as a health
risk appraisal, health library, and a variety of online wellness
institution management programs. The PHR is organized in several
convenient ways. Family and social history. Physician visits, medical
conditions, (inaudible), allergies, therapies. Medication history and
contact information for the participant. We have a ride range of
(inaudible) for our families. It triggers relevant and specific
personalized health care information. For example, if an employee
indicates a family history of diabetes, the employee will automatically
begin to receive information on the Web site minimizing the risks
associated with diabetes, as indicated a different condition for family
history of different condition they\'ll receive articles targeted toward
that. The employee has an ability to (inaudible) to improve the quality
of conversation and the interaction they have in the physicians\'
office. When an employee visits a physician for the first time, they can
share the PHR to give the physician a quick update on his or her medical
history. The current PHR system also systematically checks drug
interactions and allergy reactions and will provide the member with
messaging of possible risks and preventive steps.

It will also remind family members when immunizations are due and keep
track of doctor\'s appointments. If I were to evaluate the PHR that we
offer today, I would have to say that on the one hand it\'s extremely
primitive but on the other hand it\'s extremely popular with employees.
It\'s primitive because it requires employees to manually input most of
the data which is time-consuming and introduces the possibility of error
and selectivity and obviously it\'s not as comprehensive as what could
be provided through claims data or other information.

Also the information today can only be printed or faxed to a physician
but it is not as accessible online to the physician. And we\'re not
making full use of technology to share information. Despite these
shortcomings, about 15 percent of all hits to our employee health portal
are to access the PHR, making it the second most popular feature on the
site after the health risk assessment.

The features most often utilized in the PHR are portions of it that
allow people to track their conditions over time. So if they track their
blood sugars, they can do that over time and enter that information and
see trend information. And the other one is just information on specific
conditions that they want to research.

What that says to us is that there\'s a consensus that consumers want
PHRs. They find it provides value. It\'s worth the time and effort that
it takes to go in and put this information in manually. And at the more
comprehensive, simpler and automated we can make it the more wide use,
widespread its use will be.

That\'s why we\'ve invested and are excited to be rolling out a new and
improved PHR. Beginning in August, we\'re going to create PHRs for all
employees by importing and automatically updating their medical and
prescription drug information. This clinical and claim data will be
combined with the self‑reported information on family history and health
risks to form an integrated PHR that\'s updated monthly. As a result of
this improvement, all employees will have PHRs, not just the ones who
take the time and effort to create them. The PHRs will include more
accurate and comprehensive information on the care that\'s being
received, including dates of service, diagnoses and physicians. And the
functionality of the system will be enhanced because of the more robust
dataset that drives personalization and tracking. For example, the PHR,
one of the added functionalities that we\'ll be providing is the PHR
will now translate and summarize clinical codes and jargon into
consumer-friendly terms and will report trends over time. Like the
example that Jane used, in our system, if somebody says MRI, that will
be translated into lower back pain.

Consolidated information will improve the effectiveness of functionality
described earlier around detecting and preventing medical errors like
drug interactions. Monthly updates of prescription drugs will greatly
improve the ability to inform employees of potentially harmful drug
interactions and recommended courses of action. And because PHRs will
now be regularly and automatically updated, we plan to launch an
employee education campaign on the uses of PHR. In other words, the
utilization that we\'ve had so far has been absolutely without any
communication on our part or any marketing. When PepsiCo markets
something, it tends to do so in a big way.

(Laughter)

Our employee campaign will emphasize privacy and security of
information, ease of use, convenience and ways to leverage the PHR with
health care providers in order to manage costs and improve quality of
care. Even with these improvements our PHR is still in its infancy. Over
the next 3 to 5 years we think PHRs will evolve from information to
intelligence with interactive programming promoting consumerism and
holistic care management. The introduction of PHR intelligence,
functionality above and beyond just the presentation of data and
information will require changing the behaviors of our health care
community including physicians, employers, administrative providers and
governments. Interactive programming will change the PHR environment
from information storage to a system providing alerts, reminders and
additional tools to help employees make decisions. Some of the long‑term
possibilities that we like to see developed in an accelerated time frame
include first executive summaries of the PHR for physicians that will
present key information in a succinct, standardized and usable format.
We believe this will be necessary because 20 pages of information will
be difficult for physicians to sift through during the time of an office
visit and can antagonize an emergency situation but we encourage the
group to think of output formats as well as content.

Consumer guidance should be available for the latest news relevant to
the user. This would expand alerts from newsletters relevant to an
individual\'s risk to a broader set of information with links to the
Center for Disease Control, Health and Human services and other
information applicable to any risks. We also would like to see
messaging, which directs employees to tools to enable them to compare
the cost, quality and effectiveness of medical treatment options or
prescription drug options, and finally we\'d like the PHR to be more
portable than our current one, enabling an employee to maintain their
PHR even if they\'re no longer working for PepsiCo. PHRs will help
consumers organize and manage their health information, help them make
better health care decisions, save time and money avoid injury and death
by assuring that providers of care have access to important information.
PHRs can and should play an important role in filling the information
gap that often exists today. We applaud the work that you are doing. We
applaud AHIC and we hope we can be part of the solution that you all are
developing.

\>\> Thank you. Certainly your remarks are innovative and we thank you
for the work you\'re doing as an employer in this regard and look
forward to questions at the end. We\'d now like to request on the
telephone with us Kathleen Krantz, who is Vice President of the Greater
Omaha Packing Company for her remarks. Welcome.

**[\>\> KATHLEEN KRANTZ:]{.underline}**

Thank you very much. And thank you for the opportunity to join you via
teleconference, everyone.

I am Kathleen Krantz, the Vice President of Technical Resources for
Greater Omaha Packing Company. Greater Omaha is a third generation
privately-owned meat processing company located in Omaha, Nebraska. We
process around 15,000 head of cattle per week. We are 900 million in
sales. And we\'ve been in business since 1920. We have a unique
opportunity to share our story with you. We are a manufacturing plant
with a large Hispanic population, and so we\'ve had several challenges
in, I guess, implementing programs, but I am happy to say that as of
today we are a company that offers a full line of personal health
records which are bilingual.

Greater Omaha is a cattle processing operation, like I said, with 700
employees. And Greater Omaha is one of 17 companies in the United States
that have been designated with the Platinum Well Workplace by the
Wellness Council of America, one of 17 companies in the United States.
Our wellness structure includes a wellness committee, on-site physicals
and health fairs, free preventive screening, bilingual comprehensive
health risk appraisals, electronic education for the personal health
records, and we also have a learning center. So we are providing weekly
lunch-and-learns and we have a medical person from Mexico, actually, as
our health advisor, who helps to administrate the program. Greater Omaha
Packing continues to experience lower medical care costs for the region
as well as nationally. Our wellness program utilizing the employee
health records is attributable and continues to influence our claims
experience.

On the national average, Greater Omaha enjoys a 50 percent reduction in
our health care claims costs in comparison to the national average,
which is taken from the HRAM report. Greater Omaha has always offered a
very competitive medical plan, and we are a very competitive design as
well. We have the choice in our medical insurance plan for the employees
to go with a program called SimplyWell which we use as a third‑party
administrator to administer all of our programming in reference to
personal health records, which is a bilingual program and offers greater
Omaha the flexibility we need to actually administer to a little
different populace, if you will. A populace of maybe a lower literacy
level, or maybe a constraint on the language, the English language. So
we had to go to a TPA vendor that was able to accommodate this type of
process for us. We also went from a manual personal health record using
the HRA and the blood screening and converted it into the electronic
format of which the learning center that we opened on site and in our
plant has been a value because it has afforded our population to also
have access to computers. We\'ve also offer ESL on-site classes, and
computer classes which also help the employees to learn to be able to
use the personal health record and understand it. So education has been
key. But we\'re just a little more unique, I guess, as a smaller
organization utilizing the personal health record as a management tool.

In order to positively impact employees and claims experience, the
personal health record, we believe, is the full circle of employees
taking ownership and knowing their personal health and making any
necessary changes or disease management interventions for a continued
healthy lifecycle. The packing claims experience runs below carriers\'
expected claims level due to intervention of the personal health record
and the wellness program itself. The personal health record program that
we use is free of charge to all Greater Omaha Packing Company employees
and the wellness impacts these expenses. Although expenses are less than
most employers, Greater Omaha Packing Company continues to monitor our
health plan, wellness plan and to strategically plan the benefits
offered to our employees using the tools and resources of our
third‑party administrator, which includes an executive summary.

The following intervention programs for program wellness program are
based on the individualized personal health records and some of those
include improving fitness, coronary risk reductions, weight management,
cancer risk reduction, managing cholesterol levels. And from that report
we are able to take that information and design our wellness program
with goals and objectives for each particular year after we have the
actual personal health records coming back and distributed to the
employee.

We saw a limited amount of people participating to actually converting
it into a program of having the medical program, the option, as I talked
about, in the insurance program being a choice program, a two-tier
insurance program where if the employees want to participate in and be a
part of our wellness program, the SimplyWell Program, then they are
given the opportunity to have a richer benefit program, if you will. We
call it our Cadillac program, and so that would mean that they would
participate in the health risk appraisals and the on-site screenings and
taking ownership of their healthy lifestyle.

If they don\'t, we have a second tiered plan that they actually
participate in. So we saw our numbers increase dramatically when we
implemented that plan. We have about 85 percent of our workforce now
participating in the personal health record management program. I guess
a minimum personal set of health records at a minimum would not ensure
an adequate amount of information to the providers and medical community
since it is a living document and transfers to the consumer's care
package.

I guess there are several ways to customize an organization\'s personal
health record programs and thereby improve it. For example, a PHR may be
accompanied with a biometrics, which is the cholesterol, blood pressure,
percent of body fat, blood sugar, et cetera. But also targeted followup
with employees is a means to improving personal health record
administration. All options of personal health records point to one
foundational truth which is personal health records are not alike. They
can vary tremendously by size, content, emphasis, utility, format,
scientific validity, usefulness of data and, of course, quality of
output and cost and behavioral effectiveness.

The business community should select the right PHR for their
organization based on the demographics and specific needs of their
program administration. If the interoperability can be achieved through
an electronic PHR, the administration of the program is enhanced. And
the accessibility of the electronic PHR is easily transferred and can be
updated through this system used by the medical provider.

The following points originally appeared in the Art of Health Promotion
newsletter and are designed to make the selection of the right PHR a
little easier. Carefully clarify your program goals and clarify the
goals of your PHR that will fit your program goals. Secondly, determine
the set of functions critical to your program for your personal health
record. Rank the functions from most important to least important.
Third, prepare a list of specific activities and corresponding actions
your personal health record will enable you to accomplish. Fourth,
examine your program staffing, evaluate the benefits of having your own
software and administering the program or partnership of an outside
vendor. Issues of hardware, software, privacy concerns, time interval
implications, updating data management capability, transportability and
the counseling process are key factors of decisionmaking in a personal
health record.

\>\> I would like to ask, regrettably we\'re getting close to the end of
time for testimony. If we could ask you to move to your closing remarks,
we would very much appreciate it. Thank you.

**[\>\> KATHLEEN KRANTZ:]{.underline}**

\>\> In closing, the timing is very good to enhance the utilization of
personal health records with the health providers, either through
education or integration with the vendors and medical community. The
personal health record offers the patient an integrated solution for
taking ownership of knowing how personal choices and health behaviors
impact the outcomes in disease management. The time is ‑‑ (lost audio).

**[\>\>:]{.underline}**

...we have places to connect it to. We\'ve been working on some small
initiatives to try to be proof points of that. So we have, about 70
percent of our employees are in our self‑insured plans and 25 percent
are in fully insured HMOs. So we\'ve gone to our largest HMO provider in
the country and said, you have personal health records and you have a
lot of electronic health records, let\'s get together, let\'s see if we
can make them interoperable, share information, let the employee choose
whether they want it at the health plan, whether they want it at the
employer. If they change plans, the information should be portable. So I
think that\'s the kind of proof points we need. But you\'re absolutely
right, it needs to connect to something. Right, today we\'re in our
infancy. We don\'t have something to connect it to.

**[\>\>GREG:]{.underline}**

We do view benefits as being a competitive advantage due to who we
compete against for talent. But the fact of the matter is I\'m going to
be providing benefits to the people I hire as long as I\'m in business
and I think I\'d rather have a, I\'d rather hire an employee who has a
PHR and is an educated consumer and understands the importance of living
a healthy lifestyle and making good consumer health care decisions. I\'d
rather hire that kind of employee than one who isn\'t that. And so as
far as I\'m concerned, given that I\'m always going to be providing
health care benefits I\'ll always have turnover I\'d prefer these to be
pervasive in the marketplace and take route rather than for me to have
to educate every single person I hire about what a PHR is simply for the
duration of time that they\'re working at PepsiCo.

\>\> Thank you for your questions. Thank you for your responses and
let\'s move to Davette Murray.

**[\<\<DAVETTE:]{.underline}**

In your companies, what do you do to show that employees have a value
add to participate in your personal health system.

\>\> We have a saying that good health is its own reward but incentives
help. Which means that right now we\'re motivating people financially to
participate in employee wellness programs, and when we roll out the new
PHR that I mentioned, there will be incentives tied to that. So people
can earn credits against the cost of their medical care or they can
actually earn money that they can use to spend on their benefit program
or done to a travel organization or a gift check. So we found that
incentives at least in our company are an important part of the employee
engagement process.

\>\> Go ahead Kathleen.

**[\>\> KATHLEEN KRANTZ:]{.underline}**

I was just going to echo that same factor that people like to be
recognized as far as what they\'re doing, whether it\'s the wellness
program incentive, the challenges. We have also developed several
programs that the employees can participate in voluntarily and it\'s
amazing to see when you offer maybe a cash incentive or whatever
incentive you offer, that they do participate. They like to be
recognized and included in their peers that they are actually making a
difference and it\'s like it\'s a trickle down effect and people jump on
the bandwagon. We found this to be very captivating for our employees.

\>\> I\'d like to add two additional points it\'s important to have a
campaign to reinforce the messages and helps people to understand you
know what the benefit of the PHR, the health management center, the
wellness programs, chronic disease programs are all about and how it can
benefit them.

The second piece, though, is I think it\'s very important to make sure
that the PHR isn\'t something that\'s just a data repository that sits
there. It has to be systematically integrated with all of these other
tools and benefits so that the programs leverage each other. So I don\'t
care if someone gets to the personal health record because they took an
HRA or because they\'re traveling and they want to have something to be
able to carry with them or I don\'t care how they get there, but the
importance for all of these programs that the right people are getting
to the right information and tools to help improve their health.

\>\> I think it comes in the administration of the program. There\'s
different ways to manage that. But if you use a vendor, they do have the
capability of phone coaching and actually communicating to the employees
once they get their personal profile their personal health record and
they can help communicate that process, whoever you select to
administrate your PHR is very valuable.

\>\> We\'ve been conversing at the front, as you can see we\'re all
looking at our watches, but your presentations have been compelling. We
do have additional questions that the committee would like to ask the
three panelists, and if we could ask if you would be willing to hold
with us. Our lunches are going to be brought in. We\'re going to
apologize in advance for the fact that the people on the panel may be
trying to get a bite of lunch, but we would like to be able to continue
asking questions if you can stay with us, with that we\'ll go
immediately to your question, Marc.

**[\>\>MARC B:]{.underline}**

Thank you for doing a wonderful job in illustrating a really terrific
coincidence of interest between the employer and employee. I think this
is fantastic and I really appreciate that. My question is similar to
Davette\'s in that a lot of organizations will provide financial
incentives to promote adoption and then they have their communications
marketing plans around that. But there\'s also some other opportunities
that start to look at normalizing the use of electronic personal health
records. They\'re in a more social action or public engagement model
where they\'re involved in the design teams as to how these are going to
look or in creating the dialogue at the community level about the
benefits. Have you explored those options and if so what do they look
like.

\>\> We\'ve not explored the options you\'ve described. But in the past
we know in communications if you send a message that says, you know,
keep your cholesterol within control, people don\'t get it and act. But
if you can send a personally relevant information to them that says, you
know, your cholesterol is 260, here\'s the standard and you should be
having discussions with your provider and here\'s the information about
it, and then when they talk to their provider, their provider may put
them on a medication that they have resources then to help understand
are they on a medication that interacts with other things they\'re
taking. So the tools around helping them to engage, that\'s really
personal and actionable are really where we\'ve been focusing sort of
our ongoing efforts.

\>\> Can I just say, several, I think several speakers today have
commented on the importance of educating consumers about the value of
the PHR. And I wholeheartedly agree with that. It\'s still not a well
known sort of phenomenon out there in the employee marketplace, but the
thing that I would, the consideration that I would add to that is kind
of, you know, what it is that we market about the PHR. I think often we
think of it as complicated integrated interoperable health record. And
quite frankly that\'s not what\'s going to create consumer engagement
with PHRs. Just like any product we make you have to get to what are the
life-enhancing benefits of a PHR. And I think we need to talk more about
well‑being and convenience and improvements in the quality of life and
the interactions you have with your health care givers if we\'re going
to engage health care consumers.

\>\> I would agree with that. I believe that this medical profession,
this is much larger than just the business community and the employers
doing the PHR or using the wellness programs and the PHR as a tool. I
think that the medical community, the insurance carriers, I think that
it has to be an integrated solution to actually make it a forward
movement if we look into the future of where this is actually going to
be taking place.

\>\> Thank you, there\'s a question. Charles.

**[\>\>CHARLES:]{.underline}**

We\'ll get to the question of interoperability and a comment being made
that there be a need for a public utility. As employers, you ultimately
underwrite the cost of health care maybe 40 percent being the government
and the rest being what you guys ultimately pay for. And one of the
things that communities struggle with is how to fund the infrastructure
for the exchange of health information. So in communities like Omaha
where you\'re just centralized but I assume you have large
concentrations of employees in certain regions, is there any thinking
about helping to fund some of the essential community infrastructure for
making the interoperability happen as a public-private partnership kind
of deal?

**[\>\>JANE:]{.underline}**

IBM is doing that in a cooperative effort as an example in our
Mid-Hudson Valley, where we have one payer that has a significant part
of the market there of providers. We\'ve offered to provide them funding
to reimburse providers on a performance basis for e-prescribing, for
example. So that they would improve their reimbursement if they adopt
the technology. That\'s like a first step of this greater effort around
these regional health information networks. So we can build that network
and ideally we would be connecting our personal health record to that so
that we can begin to continue the work on this road. The work is there.
We as an employer have invested in that from our health benefits side,
because we believe it will improve the health of all employees by doing
this, and so we think it\'s very important.

\>\> Thank you, we have a question from Robert and then we\'ll
immediately go to Lorraine and Kelly an announcement.

\>\> And a question.

\>\> Okay so we\'ll go to Robert.

**[\>\>ROBERT:]{.underline}**

Thank you very much for your plans and presentations. We\'re challenged
by something I think you already faced and perhaps surmounted and that
is convincing potential PHR users that their information is protected
and secure. And what we heard earlier is correct. You\'re the least
trusted of all entities, yet you\'ve still managed to get large
percentages of your employees to participate. I guess my question is,
assuming that we\'re not going to have Pepsi\'s advertising budget, how
did you go about convincing your employees that that information they
were sharing would not go back to the folks that might impact employment
decisions and things like that?

**[\>\>GREG:]{.underline}**

Yeah, it is a concern. I don\'t want to kind of make it out to seem like
we\'re completely over the hump on this. The way that I think we\'ve
tackled it was we partnered with what we thought a trusted third‑party
branded vendor was in the marketplace. We made it clear that they were
hosting the application, and in every communication that we have done
from the beginning, there have been very, very strong communication
statements about privacy, the fact that PepsiCo will never have access
to any individual\'s information and from the CEO on down. It\'s been a
very explicit part of our communication strategy since we rolled this
out.

\>\> I would just echo that. And as an employer, it\'s not like this is
the first time we\'ve done that. I mean disease management, we did
outreach programs where you know information went to a third‑party
vendor and we told people about it. We learned things from doing that. I
think having the third‑party vendor, emphasizing that up front, putting
it in the context of their overall benefits or how it benefits them is
also important.

The other piece is that, one, it\'s free to employees and it\'s totally
voluntary. So when people go to sign up for this, you know they have the
disclaimer, it tells them exactly the flow of information and you know
how it\'s going to be used so if they choose not to participate, they
don\'t need to participate. We added another layer on that, when we
brought in the claims to make them aware when they went to the personal
health record there was more information that was going to be added and
you know they had the opportunity to say no, I don\'t want this to come
there. And we\'ve had very, very few people question either of those and
you know opt out for any of those reasons.

\>\> Not to underplay the concerns about security, but in our
experience, you can, there\'s a relationship between, the amount of
control that you give people and the level of concern that they have
around security and privacy are very related. So we at every step of the
way have tried to give people control. It\'s voluntary whether you do
this or not. It\'s voluntary whether you allow your information to be
shared or not. It\'s all up to you. That seems to allay a lot of
concerns.

\>\> Thank you for the question. Thank you both for the responses, and
certainly I think a number of us had the same question. So thank you all
for answering that. I\'d like to go to Lorraine.

**[\>\>LORRAINE:]{.underline}**

Thank you, and mine is related. And I don\'t remember how this
SimplyWell tool is populated that Kathleen mentioned or Pepsi. But you
were talking about the next phase, it will be automatically updated with
claims information. So I assume that it will also be voluntary that
someone would go in and decide whether or not they actually wanted that
or are they going to get a message saying we\'ve populated something for
you?

\>\> In our case they\'re going to get a message that we have added this
functionality on behalf of all employees in that their medical and
prescription drug information is now in their PHR, and it\'s available
to them. In addition to whatever self‑reported information they\'ve
provided.

**[\>\>LORRAINE:]{.underline}**

\>\> If you give the people a chance to opt out ‑‑

\>\> We don\'t actually pull the medical claims in until we tell them
that. So technically we could say everyone has a PHR because the data is
available to do that, but we don\'t tell them they have the PHR and they
want the data.

\>\> I admire the question, I admire the ability of this panel to
continue responding cogently while we\'re playing musical lunch box at
the committee, but I\'d like to thank the staff for doing this also for
the panel. And I would say to those of you who are in the audience, you
can clearly see the interest in this panel and I would say take your
lunch breaks as you find that you indeed can. I\'m so sorry that we\'re
working through this.

There is a follow-on question here, Kelly.

**[\>\>KELLY:]{.underline}**

I was just wondering if when there\'s a population of the claims data,
is there ability for the patient to or employee to decide or to review
the data and correct errors of omission or commission? Do they have the
ability to manipulate the data?

\>\> Yes, there\'s a couple ways they can manipulate the data. I
shouldn\'t say manipulate. They can correct the data. One is we give
them a ‑‑ if we tell them how they believe the data is inaccurate, what
they need to do to make a comment on that data or do a correction to
that data. That\'s not unique to electronic health records. That\'s true
of any health record. There needs to be a means to correct data that\'s
felt to be inaccurate. Besides that, the source of the data is annotated
on each individual record that\'s within the personal health record. And
the employee can decide what they want to show or not show as they print
out a version of that, and you know they can show and show as they see
fit, right? They can toggle it back and forth.

\>\> What it becomes is the employee takes ownership of their own
personal health record and so I agree that it is something that is their
own, they can manipulate it as you have discussed in making it user
friendly for themselves.

**[\>\>KELLY:]{.underline}**

\>\> With the risk appraisals and assessments getting done I recognize
you all have policies that you know clearly have a third‑party handling
this and that you\'re telling your employees up front that you don\'t
have access to the data, but there is a follow-on service that
distributes materials to them or helps them take care of certain
high-risk conditions or whatever comes up on the risk appraisal. So is
that clearly all that happening then within that third‑party function
and is there ever a time that you would have access to that risk
assessment or risk appraisal?

\>\> We would only have access to the aggregate data from the risk
appraisal. That\'s a valuable part how we evaluate the program and the
program\'s effectiveness. How we administrate as well.

\>\> And to my earlier point about control, the participant has to allow
the health risk appraisal data to be forwarded to the organization that
can help them manage their risks before that will even happen.

\>\> Thank you and yes we do have another question.

\>\> Just wondering, do you allow your employees, their family members
maybe, to have personal health records and for their children, track
their information, or even delegate if they wanted someone else to be
the primary, I guess, custodian or control of records?

\>\> In our system, the employee and staff can have these fully baked
personal health records that I mentioned. We\'re not currently capable
of setting them up for children. That\'s more of an internal systems
limitation more than anything else, and I believe that part of each
person\'s personal health record is whether they give access to other
family members or not. So, for example, in my spouse cannot
automatically see my PHR unless I give her permission, and vice versa.

\>\> Our system is set up a little bit differently in that it\'s driven
off of our health benefits HR site where we, you know, people manage and
control things about their money and their health as well. So it\'s
password protected, which by nature says only that individual has access
to that. Now, within the health management center, there is a family
management tool. So if the member wants to populate information for
other family members including children and immunizations is like a big
one you might want to do, there\'s the infrastructure to do that. But
technically speaking our dependents don\'t have access to their own
independent personal health record. That\'s a place we\'d like to be,
but we haven\'t made that investment.

**[\>\>NANCY:]{.underline}**

We have a question from Rose Marie.

**[\>\>ROSE MARIE:]{.underline}**

\>\> In the PepsiCo written testimony, there\'s the description of user
benefits that provide information to people who use it in terms of
health news but also in terms of provider profiles which might lead
people using it to actually switch providers. I wonder if there\'s a
relationship where you\'re establishing relationships with providers
saying we\'d like to work with you to make these systems interoperable
and functional and a system where you might actually be directing people
away from some providers based on some external measure of how good
those providers are.

**[\>\>GREG:]{.underline}**

We\'re doing the latter trying to direct the families to higher-quality
providers and hospitals in a variety of ways. So while that could be a
tension, I think it\'s going to be a broader tension and a more general
tension, because steering patients towards providers who have
demonstrated better outcomes is another core part of our strategy. So it
might be a healthy tension.

**[\>\>NANCY:]{.underline}**

Thank you for the question. I know that we still have additional
questions from the panelists. However, in the interest of time, I\'d
like to get us back on schedule for this afternoon and begin with the
next panel that follows. So thank you for what you\'re doing on behalf
of your constituents within your organizations and for the testimony
you\'ve provided today. Thank you. We would at this time invite members
of this second part of the panel Dell incorporated and AHIP to be seated
for their testimony. Thank you.

**[\>\>NANCY:]{.underline}**

I would like to welcome both of our panelists and to Carmella Bocchino.
Greetings to you after many years of not seeing you and we\'re delighted
to have you here representing your association today and Kathleen Angel,
we also welcome you. Pleased to meet you on behalf of the entire panel
welcome you to give your presentation this afternoon. We\'d like to
begin with you, Ms. Angel.

**[\>\>KATHLEEN ANGEL:]{.underline}**

Thank you very much. And in the interests of the Community\'s time, I
will try to go through my remarks quickly, because you will hear that
many of them follow on what my colleagues have said. I take great
comfort in the fact that my remarks are similar, because I think we\'re
all rowing in the same direction, and all we can do to consistently as
purchasers reinforce messages for improvement with our vendors and with
the marketplace as well as partner with you all today. I think we\'re
going to be achieving the goals that we set out. First let me introduce
myself. I am Kathleen Angel, Director of Global Benefits for Dell. My
experience in health care includes about 17 years in the health
insurance industry and about 20 in managing corporate benefits for a
variety of companies including the last 7 years at Dell. I currently
serve by appointment as one of nine advisory members of the Texas Health
and Human Services Council and I did want to mention that to the
Community today. Dell provides health care benefits to approximately
60,000 employees and their families nationwide. As an IT company, we
believe in providing our customers with tools that enable them to create
customizable solutions appropriate for individual needs and we also
believe in leading by example. IT has the potential to improve the
quality and efficiency of health care and by offering personal health
records to our employees. We hope to contribute to that goal.

As you heard my colleagues say, our health strategy, as is theirs, is
consumer-centric, and it\'s a comprehensive strategy that empowers our
employees and their families with programs, resources and tools that are
easy to understand, easy to access and are personalized. I think those
are three critical things we challenge ourselves to think about as we
formulate our tools for our employees. And we hope these tools will help
them better manage their own health. The personal health record is an
important component of Dell\'s health strategy, enabling employees to
gather, store and manage their own data in a consumer-centric health
record. If you will allow me, I\'m going to spend a little bit of your
time talking about overarching strategies so you have a better picture
and literally I\'ve included because I\'m a visual learner, and I
thought a few slides might help especially at this hour of the day. So
attached to my written testimony are some slides that I\'d like to refer
to if you can find them around the boxes there. I know you\'ve got a lot
in front of you. But if you don\'t manage to find it in your pile of
paperwork, hopefully my comments will paint the picture.

Our health strategy is a three-pronged approach. We encourage our
employees and communicate with our employees to choose well, use well
and be well. Simple themes. Choose well. Select health care coverage
that fits their financial health and lifestyle needs which we have
provided to them in a build-your-own enrollment tool. We invested with
one of our vendors, give our employees the chance at open enrollment
time to go in and select the health design and options that are
appropriate for them. They in turn, much like building a Dell computer,
so it was consistent with our internal messaging, people were able to
see the component pricing. So they were able to see that their payroll
contributions would go up and down based on the choices they made. We
also committed to encourage them to use well. Understand our benefits.
Get the right care at the right time and at the right price and to be
well. Adjust their fitness, nutrition and condition management choices
to reflect their personal life styles. That will bring us to this slide
which is the launch of our Well At Dell strategy in 2004, which is
really our health improvement strategy. From left to right on the slide,
you\'ll see that we used and invested at the time, I\'ll talk a little
bit more about it, in a data warehouse aggregating our prescription
drug, our medical, all our medical vendors, our disability and our
workers\' compensation information and our mental health data into one
data source that allowed us to start to better understand what were our
people\'s health needs and what support they need from us.

As opposed to just targeting the high-cost issues, we wanted to do
something for everyone. So you\'ll see in the graphic that, not atypical
of other employers, 75 percent of our employees only generate 13 percent
of our claims cost. Twenty-three percent of our employees generate 47
percent, 2 percent generate 40 percent. So we have high-risk,
medium-risk, and low-cost employee population. In trying to give
something to everyone, we put together a compendium of communication of
tools that range from chronic care to high-risk outreach groups,
coaching, et cetera, and low-cost employees have health action for
healthy employees. So nutrition, physical activity, stress, management,
et cetera.

And if you move over to the right on this slide you\'ll see a graph that
says access active and achieve. We tried to lay this out not to just
send messaging to external organizations but this is how we communicate
with our employees. We\'ve said, assess your health we\'ll give you a
health survey tool and, much as Greg was mentioning, incentives are a
wonderful thing. But we decided to have our incentives be staged, and
reward people for performance as they improve their health according to
the actions they take. So \$50 for doing your health survey. Then if you
actually take action based on the information that\'s given back to you
in your health survey, enroll in a program, whether it\'s coaching or
chronic care program, whatever is right for you, you receive another
\$50 and as you complete certain targets within that program. Staying on
the program, working with your coach, et cetera, you get another \$100
reward. So it\'s really an incentive for positive health behaviors.

And the final picture is this is all taking place in an integrated
support system. We have a health home, if you will, for people and that
is actually a series of services, such as the ones I mentioned including
a nurse line and customized newsletters and these programs, but there\'s
also a Well At Dell portal. If you\'ll turn to the next slide that is in
your handouts, this will give you a visual picture of what I\'m talking
about with Well At Dell. On this page you\'ll see that one of the
biggest click‑on buttons we\'ve given people to access, now that we\'ve
launched the PHR, is click on your personal health record. Before they
even do this and before we get to that, I\'d like to finish off on some
of these things on the left‑hand side that just outline what people can
get even before getting into a personal health record. This is a
compendium of resources for people to understand their benefit programs
prescription drugs, conditions and it allows them to get messages that
outreach to them and affords them very click-on spots where they can go
in and take action. Assess my health, take my health survey, improve my
health fitness, where can I find out about the fitness facility and
click on to the right bottom, free nurse line, can I chat with a nurse.
Gives you an 800 number immediately or you can have an online chat with
the nurse. So a variety of support systems for people. And this is an
opportunity as well.

I think we\'ve talked a lot today about the power of the personalization
and the control of the individual to make something what is right for
them. That\'s critical to the core of this. You go in as an individual
and populate what you are interested in, what you hear about. I,
everyday in my e‑mail box, get a Well At Dell memo about the heart
because I\'m managing a heart issue. I also get it about, you know,
healthy exercise, because I have set that out as a goal. So we\'ll do a
certain amount of outreach but only as the individual has told us they
want outreach, number 1, and what they want to have the outreach be
about. So we think of this as one-stop shopping. It\'s easy, accessible,
linked right off our home page and from this one-stop shopping page we
are trying to continue to make it easier and easier for our employees.
As a matter of fact, just this week we launched a direct link on this
Web site as well as through our personal health records to our
prescription drug vendor. So people are either looking at this page and
want to click on vendors, they will go without having to do another
password sign on and that\'s all been done through secure connections,
believe me when you live in an IT shop, you really, we\'ve been working
on this for quite a while. It\'s very secure. But it makes it easy for
people. And there they can go and take action on what they want to do to
renew their meds, talk to a pharmacist at our vendor, et cetera. That\'s
a new feature we just launched this week we hope to do more and more of
those.

Well At Dell results. Fifty-five percent of our employees have taken
health risk assessments. To give you one example of the coaching
programs, we have, bear in mind we\'ve only been doing this about a year
and a half, two years, so we certainly hope to achieve some of the
results that are impressive that our colleagues who have been at this
longer than we have, but right now we have, 66 percent of our health
coaching participants have reduced or eliminated at least one risk. For
example, in hypertension, 46 percent of the Dell participants in that
coaching program have reduced their level of hypertension. So we see
this as very encouraging indicators.

Prior to April 2006, we had what I think of as a very passive personal
health record, but we had it. It was there. People went in and took
their health screening information and they put it on the report, and
added whatever information they wanted to. We tried to make it as easy
as possible. When we did our health screenings, we gave them all cards
and said here are your results. Go back to your personal health record
and input this, so they were remembering their cholesterol results.
Something very low-tech like that can actually be very helpful but if
you\'re looking for population employee entered information they have to
have it in front of them to remember the numbers. Actually we did a
badging and advertised many times saying know purchase numbers,
everybody was wearing a badge saying know your numbers, know your
cholesterol numbers. Brand new, April 2006, we launched the PHR with the
claims data import, moving our efforts to the next level. So we\'re
combining the claims data import that I mentioned that we had already
invested in our data warehouse with the self‑reported data from the
health risk survey and is a tool that allows for consumer customization.
Employees received customized invitations explaining a simple, secure
process of developing a record. I would reinforce what my colleagues
said about security. We take it very, very seriously.

We\'ve gone a slightly different approach in terms of giving people
access to the personal health record. Piloting approach, we\'ll see how
things work out with the approach that Pepsi and IBM have taken versus
what we\'re doing, but we\'re actually asking people to opt in. And by
doing that, you go to your Web site with all your information that we
just talked about, but then you essentially do one more sign-on to elect
that you want to have a personal health record. The data is there. The
data is in the warehouse. Their election is taking that one more step
that says I\'m engaged. Then the data is populated and they have their
personal health record. We\'re going to test and see if that engagement
is a beneficial way for us to populate it. In one way or another we want
to get it across to everybody. I think taking that one step will provide
that level of engagement and interaction that\'s going to be critical in
making this truly a useful tool.

Again, our data is completely confidential. It sits on an outside
server. We have 2 years' worth of data, and the highlights secure and
voluntary. It aggregates user specific clinic information. It permits
target messages. As a matter of fact, the other day I was glad you all
asked me to prepare for this testimony because I went out and checked my
message box. I had a message I was due for screening. So thank you very
much.

**[\>\>NANCY:]{.underline}**

Could we ask you to come to conclusion.

**[\>\>KATHLEEN ANGEL:]{.underline}**

Sure. Sure. Absolutely. My conclusion is this: Why invest? It\'s
basically supporting overarching goals to keep our employees healthy and
productive. We share those at a community level as well at an individual
business level. We\'re in the initial stages of this effort. But we
think that they\'re powerful consumerism tools. We think used in
conjunction with customized health improvement programs such as I\'ve
outlined and incentives for taking action to stay healthy the personal
health records can empower consumers to maintain, improve and manage
their health and may result in better outcomes. Thank you for allowing
me to speak with you today and provide this testimony. I appreciate it.

**[\>\>NANCY:]{.underline}**

Thank you. We appreciate your remarks. And look forward to asking you
questions. Now we welcome Carmella Bocchino to address us on behalf of
America\'s Health Insurance Plans.

**[\>\>CARMELLA:]{.underline}**

I want to thank the Co‑chairs Nancy Ennis whom we\'ve worked for years
she\'s worked with consumers over a decade and Rose Marie Robertson, I
look forward to working with you as well and the members of the
Workgroup.

I want to congratulate this Workgroup because you\'ve placed consumers
at the forefront of all the discussions around health IT and that\'s
essential as we go forward. As Nancy said, I am Carmella Bocchino. I\'m
Executive Vice President of America\'s Health Insurance Plans. Which is
the national trade association representing nearly 1300 health insurance
plans that provide coverage to more than 200 million Americans. And I\'m
speaking today on behalf of both AHIP and BlueCross BlueShield member
health plans through an important partnership that we\'ve created to
spur the adoption of patient centered interoperable personal health
records and I\'m speaking to you not only by what we found in consumer
and provider focus groups but also through personal experience with the
PHR because PHRs are available to all the employees at AHIP through our
health insurer.

Think about the ability to view your own personal health information
through a secure Web site to review recent visits to the physician or
hospitalization or the medications that you\'re taking and receive
reminders to have prescriptions filled, reminders to have preventive
screening as Kathleen just said, or routine needed vaccination for your
child, or be provided with important information about potential
interactions with over‑the‑counter drugs that we all buy that may
interact with the prescription drugs you\'re on. And getting a message
that basically says before taking these drugs you should speak to a
pharmacist or your physician. That\'s really the promise of what a
personal health record can do. Now, consider the number of families that
are juggling health information not only for themselves but in caring
for their patients as well and how complicated it all becomes. What
we\'ve found is our industry is committed to advancing an interconnected
interoperable health care system that can provide health information
electronically in a secure framework, and a PHR is an integral part of
that connected system. I\'m going to focus, as I said, about the project
underway and particularly the importance of privacy and security that we
heard throughout our focus groups. And then I\'m going to summarize with
key thoughts. We conducted focus groups beginning in July of 2005, with
four ‑‑ six, I\'m sorry, six different focus groups in three markets:
Washington, DC, Houston, TX, and Los Angeles, CA, to better understand
consumer awareness and perceptions of PHRs, both perceived benefits and
any concerns they have. We believe widespread adoption of PHRs will only
occur if they\'re easy to use and provide a real benefit to the
consumer. Consumers voiced an interest and desire to know more about
PHRs and their use but they\'ve also asked us some very important
questions throughout the focus groups. Our focus groups were as
elementary as what should we call these, should they be called
individual, personal, consumer-centric. And personal is what we came
away with through every one of the focus groups. To consumers, personal
said to them it\'s controlled by me. It\'s mine, and it\'s private. And
that\'s why we\'re going forward with the PHR. We started the focus
group, the first focus group we did, we did not do any visuals for the
first half hour of the focus group. And it only served consumers. Words
cannot explain the power of what an electronic display will show you.
And so we quickly moved to actual demonstration of what PHRs are and
what they can show you, and that first slide you have in your slide
packet of a sample PHR, this is actually taken from a PHR that\'s
available to AHIP enrollees. It was then by them seeing the visual of
the benefits of the PHR that we started a very different dialogue with
the focus groups. And quickly when we asked them, why would you likely
use a PHR. What we heard consistently across all the sites was for ease
and emergency access to my records. But please make sure it\'s secure,
24/7 accessibility regardless of location, because it\'s convenient and
it would be easy to access. And it would help me manage care for others,
especially my parents.

The more consumers understood about health plan PHR, their interest
grew. The most important was the following: control over their
information, security of their information, ability to manage
complicated medications. Receiving reminders about preventive treatment
and having access to their own health information so they could better
manage their care. Since there was a question before about trusted
source, I will tell you, in the early discussions, the question of
"Could health plans be a trusted source" was certainly put on the table,
but when they saw the amount of information that could be displayed from
a health plan, a lot of that concern really diminished, and their focus
became, I want this information. It can be helpful to me if we can do it
in a way that\'s secure, then this is important.

For PHRs, two overriding questions consistently arose. Will my
information be protected from theft, violations of privacy or
discrimination, will it be shared, who will it be shared with, and
whether I have control? For PHRs to be widely used by consumers, they
need a clear understanding how PHRs will reduce confusion about their
own personal care and simplify their lives. We learned that women had
different comments than men did. Women especially wanted access to a
complete medical health history, and the ability to correct any
information, portability of information across health plans as they
moved from one plan to the other. And the option but not necessity of
adding additional information if they so chose. They wanted assurances
they will have control over their personal information, that they will
dictate how it gets used and who gets to use it. If they didn\'t want
the full amount of their personal information to be shared, even with a
provider, they could control what is shared from that PHR. That can be
very controlling, I think. Anyway, our focus is ‑‑ no gentlemen at the
table. Our focus group participants told us that PHR should not add
burden to the record keeping. Their lives are far too complicated. They
did not want to sit and populate a PHR. They wanted something
prepopulated that they could review with existing information and make
corrections too if they felt it was wrong. In addition consumers said
they did not want to pay for their PHRs. Most consumers understood after
the visual and after some dialogue the actual power and value of PHR.
They understood that health insurance plans have this information any
way, so it\'s a useful tool to give back to consumers that are enrolled
in those plans. And they think health insurance plans can be an
important link between the patient as well has the provider if we could
make this information interoperable to the provider as well.

Finally, consumers really stressed the importance of portability of this
health information. When we talked to them about the ability of
downloading this information and taking it into physicians\' office so
they would not have to fill out that clipboard every time you go into a
physicians\' office, they actually wanted to make sure that this
information could be sent to the physician\'s office and they wouldn\'t
have to download anything. They stressed the importance that if they
change jobs, this data has to move with them. They may decide to change
health plans during open enrollment. So they wanted this information to
move with them, and employers change health plans so this information
needed to move with them.

After speaking with consumers, we next sought some input from providers.
Our consultants actually had a meeting with physicians from multiple
specialties to assess their understanding and interest in electronic
personal health records. It won\'t be a surprise to you that they
believe physicians should have an electronic health record but it is too
costly, takes too much office time. They were concerned about claims
information being used for personal health records, because I believe
they know how they\'ve used claims data in the past to increase
reimbursement and so they wanted to be sure that there were edits and
corrections put on any claims data before it became part of the personal
health record. But with that said, they believe that there was probably
valuable information sitting at the health insurance plan if it could be
displayed in a way that would be helpful, not only to the consumer but
helpful for them, they could take it under consideration when they\'re
making their health care decisions. I doubt we convinced any physician
in the room that they would use that information as part of the health
care deficiency but it would alert them to things that were there that
they could start dialing and looking for additional information on. Most
physicians said they needed information on diagnosis and procedures,
other physicians who treated the patient and how frequently the consumer
went either to an emergency room or physician's office. They said they
need four key items of health information for decisionmaking. They
needed previous diagnosis, most recent procedure an individual would
have undergone, any new allergies and a list of medication. They said
those are the four things essentially in an emergency room in order to
appropriately treat a patient. In an office area, require log data, they
need to know how active a patient was in taking part in their care.
Pediatricians were also interested in having height and weight of
children, as should be imagined.

In addition, several physician organizations aware of the health
insurance interest in launching PHRs sent a letter to our CEO in the
fall of last year to set a single standard for the content and message
structure to avoid any problems that may arise should there be multiple
data formats from multiple data plans. PHRs that conform to a single
standard, and I\'m quoting, will enable interoperability, will allow for
the datasets to be read and interpreted by both consumers and providers,
as well as computer systems, permitting data to flow from health plan to
practice. It was signed by 10 different medical specialty organizations.

Let me turn to a description we have with a program we\'re doing with
BlueCross BlueShield. We partnered with them so we could have all the
health insurers at the table when we began the project. The project is
both to standardize essential data content of electronic based personal
health records and to make PHR information portable across health
insurance plans. That\'s our main focus. Phase two of it will be the
interoperability with the physician\'s office, but right now what we\'re
focusing on is making this information that resides in a health plan
portable as consumers move from one health plan to the next.

Our goal is for health plan‑based PHRs to contain a core set of
information no matter what vendor is used, which is important to
consumers when managing their care and to providers when seeing
patients. We worked with key experts and consultants to help us develop
in and amongst our dataset as well as listen to consumer and provider
input and the rules to achieve portability. Our research indicates that
it should include 13 data categories, which is found on page 3 of your
slides, which is labeled standard PHR data domain. Included is our
registration, patient information and medication history that\'s
previously been recommended by this Workgroup. Also included are family
history, physiologic information, health care encounters, immunizations
and medications, health care providers and facilities, health care risk
factors, advanced directives, alerts including known allergy, health
plan information and plan of care such as reminders, orders or
prescriptions that are recommended or care management program regarding
over-the-counter drugs which appear to be a question that continues to
come up, this actually be included when they do self‑reported
information or when they fill out health risk assessment, which would be
any self‑reported information. Slides 3 and 4, which I\'ll get to in a
few minutes, actually explain the pilots we have underway.

There are a number of information technology standards across the health
care system. AHIP has worked with the standards organization to leverage
the existing IT standards. For each data category we have identified
specific data elements within the category which are mapped to
definitions and existing health IT standards including ANSI X12, the
National Council for Prescription Drug Programs, HL7 and Continuity of
Care document. I want to stress that our industry work builds on
existing health IT standards. We in no way wanted to create standards
outside what were currently being used, and that no standard current,
but however, no standard currently exists to transfer data from one
health plan to the other. Because of that we needed to expand on the
existing ANSI X12 standards and XML standards to identify specific
implementation scenarios to move data from Plan A to Plan B. Neither
BlueCross BlueShield Association nor AHIP will maintain or update any of
the expanded standards used to assure portability. Rather we\'ll be
working with the appropriate standard development associations for them
to assume ownership and ongoing maintenance going forward.

We have actually just begun the pilots for this portability. We have 10
planned that are going to be involved. They\'re paring up to move, not
actually records because we don\'t want to get into patient identifiable
information, but actually sample records that they\'ve composed to move
from health Plan A to health Plan B that included all the data domains
that we\'ve actually talked about. And on Slide 4, the three scenarios
for plan-to-plan transfer include an employer group switches from one
plan to the other, and an individual changes jobs and has a new health
plan, or during open season the employer allows new health plans to come
in and the consumer then chooses a new health plan. We listen to what
our focus group says and those were the scenarios we put together. Slide
5 actually shows what\'s going to happen. We\'re using 500 sample
records from different plans to move this data and we\'re actually going
to go back and test it.

I want to go back to privacy and security. Because consumers have
stressed the importance of privacy and security, their top concerns with
any electronic movement of health information or where there\'s
portability of health data, privacy and security have been the focus of
everything we\'ve done. Consumers must have confidence that the
information in their PHRs will not be used or inappropriately disclosed.
As part of this project, we are working on operating rules that will
include consumer consent. We\'re actually going to test an opt-in or in
an opt-out method: Should consumers opt-in relative to their PHR or
should they actually have to opt out and say they don\'t want a PHR. And
the reason we want to test that is that a lot of consumers do not
understand the benefits of PHRs and you want to get them engaged to
understanding this and you want to get them engaged to actually look at
this before you go forward and they just not have a PHR available to
them. The rules will also include record retention requirements and
specific privacy and security requirements which are consistent with
HIPAA and serve as a foundation for health insurance plan activities
that will further ensure that consumers can trust the information in the
PHRs that are being introduced. I\'ll tell you about another add-on,
we\'ve been recently in touch with the Council and we\'ll be working
with them. We\'ll be developing a joint action plan to increase consumer
awareness and demand for PHR at the grass root levels. We\'ll be working
in two states to educate and mobilize individuals with chronic
conditions and help them become educated about values of PHRs.

Let me conclude with a few thoughts. PHRs must be consumer-focused. The
market will drive innovation based on what consumers are demanding.
Health plans are advising us that the more functionality the consumer
has available, the more likely they are to use PHRs. But we\'re starting
with some, the 13 data domains that we told you about, many health plans
will build on those domains to expand functionality. The role of
standards, while it\'s important to set data standards it may be too
early to define the detailed requirements for certification of PHRs.
However, we absolutely see the value in ensuring that electronic health
records have the functionality to both feed data into a PHR but also
receive data coming from a PHR, and we\'re committed to working with
HITSP and standard development organizations to achieve standardization
in the health information standards. Your work should not inhibit the
role that health insurance plans can help in serving as a PHR host to
their consumers. We found this absolutely invaluable education is needed
and it\'s important that the committee does whatever it can to market
innovation and highlight best practices in the marketplace. So that
others can learn and adapt them. I thank you for the opportunity to talk
to you today and I like forward to your questions and furthered
dialogue.

**[\>\>NANCY:]{.underline}**

\>\> Thank you for your testimony. I know members of this panel are
looking forward to the questions that we can direct to each of you this
time. Floor is open. Robert.

**[\>\>ROBERT:]{.underline}**

\>\> Thank you so much for coming to testify. Let me ask you, if I may,
a business‑centric question. The last panel, especially the Omaha
Packing Company case, suggested that they realized some significant
savings in their health care costs, and we all know that that\'s a
burden on American corporations. In the Dell case, it sounded like you
were seeing some real reductions in things like hypertension and things
like that through alerts and monitoring. Can you give me a sense, any
ROI, any cost savings to get out to the industry to say, employers you
need to embrace this because it\'s going to save you money and with
AHIP, obviously you\'re offering this to your employees as an
association, because I\'m in a trade association as well. Is this
something that you can see some cost benefits on your side? We\'re in
the process of returning to our employees. We\'re trying to invest in a
strategy that will deliver on both. I\'ll say in clinical terms although
I\'m not a clinician we have positive indicators no studies yet. But
what we\'re seeing besides risk reductions and we\'ve been able to
measure those in the self‑reports with just this week on this
preliminary data from our data warehouse. It\'s done an analysis that
shows that the cost relative to a peer group of nonparticipants and
participants in some of these programs is showing up. All other things
being as equal as we can measure them, double digit, you know, savings
for the people that are participating in the program, lower use of the
ER, lower length of stay. Our program is new but those are the things we
want to measure to encourage others plus justify our own return on
investment.

**[\>\>CARMELLA:]{.underline}**

Again I\'ll give you some data because we\'ve not quantified this yet,
because we\'ve only had our PHRs less than a year at AHIP. Let me give
you personal experience which I think will be instructive to the group.
When I first got my PHR, there was some questionable information on it
and I wrote a note. And clearly there was a coding error on one of the
claims which is what populated the PHR. What shows on my PHR now is
consumer input, is basically a line that says consumer asked this
question with a date. And that\'s what will end up happening. There was
a lot of concern from physicians if consumers had the ability to have
input into their PHR, would they change the PHR, and so the way it\'s
appearing at least on our PHR is a notation of what\'s requested and
what happened and so that becomes transparent and visible. I also had a
whole series of radiological studies being done for some unknown problem
that I had that nobody could diagnose. When I went to my second
specialist they wanted to repeat all those tests. I said we just had
them. They said I don\'t have them. And they were digitalized, and
because this particular specialist had an electronic health record, he
had those digitized radiology results in his office while I was there.
Now, that\'s not going to happen across every office, because we don\'t
have electronic health records in every office. But that\'s absolutely
the power of what can happen with electronic transportation. Transport.
And I think those are the kinds of savings we\'re going to be able to
see. Physicians can\'t have those tests available to them when they\'re
seeing patients, they\'re going to do what they usually do which is
reorder them and those duplication of tests is what\'s costing us extra
money in the system.

**[\>\>NANCY:]{.underline}**

And other questions? Charles.

**[\>\>CHARLES:]{.underline}**

So we started off this morning with two physicians speaking to us saying
that these personal health records, if they were given, you know, what
the key adoption issue was. It was getting more clinicians to use these
things, but that\'s what their patients were telling them and what their
experience was telling them. We\'ve had panel two which has basically
given us a view of what would be called untethered. So the first view
was one end of the spectrum a tethered view and the other ‑‑ which one
piece of survey information was delivered from the most trusted groups.
Now health plans and employers at the bottom are 5 and 6 or 4 and 5 of
that scale that we looked at, have given us an untethered view but
actually have a ton of employees who are actually using these things.

\>\> Let me comment.

\>\> So if you look at the curve in one of those things, we\'re trying
to get into the middle here.

\>\> If I thought we were going to have electronic health records in
every physicians\' office within the next year, then I would tell you
the best thing we should do is have electronic health records with
patient encounter information feed to PHR. I don\'t believe we\'re going
to see electronic health records in physician offices 5, maybe 10 years
if we\'re lucky. I don\'t think consumers should go without this
information in the interim. And I think this is very valuable
information to consumers. Both to help them manage their care and to
have better dialogue with their physicians. And so in the absence of
somebody waving a magic wand and us having an interoperable system with
physicians offices and hospitals within a very short period of time, I
think what\'s being built on the employer side and health insurance side
are very important tools in the system right now that are going to help
consumers and I hope in a lot of ways nudge physicians to move towards
electronic health records.

**[\>\>NANCY:]{.underline}**

Panelists.

\>\> Carmella, I talked to Justin and others that are working on this
overall initiative about the extent to which your consultant you\'re
working with on the standards and PHR domains are collaborating with
others because I think there\'s so much going on in the standards
community now and there\'s a lot of enthusiasm now to try to really
figure out how we can advance in our operability. But yet I think that
there\'s some folks that are concerned that perhaps if one consultant is
trying to name standards by domain, that may not be taking into account
what a lot of other folks in the standards committee might think. It
would help to understand what extent you\'re collaborating and how you
expect that work to feed into the standardization process.

**[\>\>CARMELLA:]{.underline}**

We looked at the standards that this allowed the data to move, every one
of those groups were spoken to. We have had challenges relative to
portability standards. As I said, because there\'s not a portability
standard out there. And we\'ve had to make some modifications. Would
people rather us wait and let them finish their work until we did this?
Yeah, probably. But clearly what we heard from the consumers was I\'m
changing health plans now. I want this data to move with me. I don\'t
want to have to recreate things, and so what we\'re trying to do is test
the modifications that we did on existing standards and if they work
give it back to the standard setting organizations and let them then
look at it and make further modifications on it. We don\'t want to stop.
I\'ll talk personally, I have a lot of health background in my PHR. I
spent a lot of time adding additional information that my health insurer
didn\'t have. I don\'t want to do that again if we change in open season
this fall. And that\'s exactly what would have to happen under the
current scenario. And so I\'m real pleased that we\'re actually testing
some portability standards. And sometimes the private market moves a
little faster than others would like to see them move, but we learn a
lot of lessons in that movement. And I\'m hoping that\'s what we\'re
going to do. This is transparent, this isn\'t going to be proprietary
and we\'re sharing it and we\'ll give it back to the standards setting
organizations and I think that\'s the best we can do right now.

\>\> Appreciate the clarification. Just to point out that the health IT
panel is the organization being recognized by the Secretary not only to
meet needs for the health plans but to get interoperability across the
system. If it\'s a PHR offered by a physicians\' office or a hospital or
an employer, regardless of who is providing that service, that we really
do reach portability and interoperability across the board. I think a
lot of people applaud the health plans but we want to be sure you\'re
still being cooperative in the rest of the Community, trying to
harmonize. And the first round of deliverables are really coming up in
December. We\'ll have to see what measures you\'ve decided on.

**[\>\>CARMELLA:]{.underline}**

By September we\'ll have what\'s coming out from your deliverables and
we\'ll have experience with the pilot, which is real world experience,
which I think will help educate the process. It will be an important
component part of the process. You also have to remember we have health
plans that have electronic health records. So where some of this is
claims data, some of this is also electronic health record data that\'s
feeding their PHRs. There\'s a lot of stuff going in there. I\'m not
telling you we have the magic bullet but we\'ve learned across the
process and we\'re committed to working with the standards organization.

**[\>\>NANCY:]{.underline}**

Thank you. Other questions? Susan.

**[\>\>SUSAN:]{.underline}**

Thank you for your presentations. We\'ve ‑‑ particularly the sponsor,
the employer, of these records is often, uniformly appears to be done
through a trusted vendor to offer these services and to prevent the
information from leaking back into either the claims process or the
employment process. My question really goes to are there ‑‑ is there any
concern in terms of the vendors themselves and are there traditional
limits about what they themselves can do with this information, and I
mean, are the same kinds of firewalls put up around their own internal
use and aggregating of this data if they\'re running them for a number
of different plans and employers?

\>\> I would just say in general we have our contracts with our
employees that we\'d stipulate things of that nature. We\'d certainly do
regular audits, but have not yet on the personal record. We just
launched that in April, but the expectations have been set. On behalf of
our employees and performance, we would expect we would do audits and
engage a third‑party that those safeguards are taking place. I think
there\'s also enough consistency and agreement on what is critical in
terms of privacy under HIPAA regulations and other regulatory
environments that it\'s to the behest of both the vendor and ourselves
to operate in that fashion. But certainly we do not take that for
granted. We plan to audit that.

**[\>\>CARMELLA:]{.underline}**

There are some vendors that certainly rise on top from the plans that
have been burned when they\'ve started with other vendors, they don\'t
exist anymore. There are some vendors doing an outstanding job in this
area, and if you could see the detail of the kind of information that
could go back to consumers, I am really excited about what they\'re
being able to create relative to self‑management particularly with
chronic conditions which is why I\'m so excited about what we\'re
starting with the National Health Council.

(Captioner break.)

**[\>\>NANCY:]{.underline}**

We\'re now welcoming for testimony those persons on Panel 3, Dr. Mon is
present, Elaine Blechman, Dr. Blechman are present. We\'re pleased to
have you with us this afternoon. I\'m certain that the balance of the
members of our committee will be returning from this very brief break,
but in the interests of time, I would first like to welcome both of you
for the testimony that you have submitted and for your time that you
were with us this afternoon, and I would like to begin the testimony
with Dr. Mon from Health Level Seven, Inc. Thank you for being with us.

**[\>\>DON MON:]{.underline}**

Thank you. Chairs, Davenport-Ennis, Robertson, members of the committee,
participants, good afternoon. Thank you for giving us the opportunity to
present to you the activities of the Health Level Seven THR information
exchange standard. First let me introduce myself. My name is Donald Mon
and I\'m Vice President at the health information management
association. We\'re a professional society of 50,000 health information
management professionals who are engaged in furthering the best
practices for health records. You will see that I allude to a few times
in the testimony the need for or the question of, I should say, PHR
certification.

And so under full disclosure, I need to inform you that AHIMA is the
founding, one of the three founding organizations for the Certification
Commission for Health Information Technology. And though we, this
testimony alludes to the fact or alludes to the question of PHR
certification, my comments are coming from my role as the cofacilitator
for the Health Level Seven PHR Workgroup. There will be other, at the 4
o'clock time frame, where I will have the ability to speak with my AHIMA
hat on and CCHIT liaison hat on I can address those perspectives but I
wanted to assure you this is simply HL7. So today what I wanted to
address with you is what is HL7. And provide you some background on the
PHR Workgroup\'s charge and efforts to date. And then give you a brief
overview of the functional model and standard so that you have an idea
of the thoroughness and the comprehensiveness with which we\'ve worked,
and the, to identify the immediate value to the industry of this
standard. And then come back to the question of PHR certification, which
seems to be a question that is arising in the industry today.

Very briefly, what is Health Level Seven. This is an ANSI accredited
standards organization that was founded in 1987. It\'s an international
standards development organization. It has 30 international affiliates.
And its mission is to create standards for the exchange management
integration of health information in the clinical and administrative
domains. Health Level Seven has a number of technical committees and it
is these technical committees that are officially charged with
developing standards. And so there is a Health Level Seven EHR technical
committee that was authorized by the HL7 board and as you may know, that
technical committee has produced an EHR system functional model, which
will be released on July 31, next Monday, for voting as an ANSI
accredited standard.

At the time that standard was being developed, the PHR was getting great
visibility in the industry and the technical committee felt that it
needed to address the exchange between the health information exchange
between the PHR and the EHR.

So the HL7 board basically said that we don\'t have the resources to
develop nor do we have an industry mandate to create a full PHR
standard. However, it is viable for that EHR technical committee to work
on the health information exchange between a PHR and an EHR. So in 2004
we were authorized to form a workgroup under the EHR technical committee
of which I am one of the cofacilitators.

The scope, as I\'ve mentioned, is to develop a standard for health
information exchange, not to develop a full standard or standard for a
full PHR. However, as you\'ll see, from the way that the work was
conducted, we may very well end up there. Let me briefly describe for
you the activities to date so that you can get a glimpse of how thorough
the work has been. The initial work took about 4 to 5 months and the
objective was to develop a target definition of a PHR. This was simply
to gain a common understanding of what the Workgroup thought was a PHR
so it could identify functional requirements for health information
exchange. It did not attempt to develop a definition of a full PHR. In
other words, the Workgroup just simply needed to say what is it we\'re
working with, what\'s our target so we knew how we were going to build
the standard for exchanging health information.

To do that, the Workgroup reviewed two published definitions of the PHR,
the 2003 Connecting for Health definition of the PHR and the 2005 AHIMA
definition of the PHR. And it used those definitions as a way to frame a
discussion for those 4 to 6 months and what happened during those 4 to 6
months is we said, based on these definitions, is this in scope for our
work or is this out of scope for our work? And then for that six‑month
period of time, we captured the consensus decisions and documented them
in a Word document which we can provide to the Community. What that did,
it provided a lot of clarity for the Workgroup. It had a clear target
after that exercise of what it thought that it, what a PHR was so that
it could work on the health information exchange. The second activity
was then to do an environmental scan.

The committee gathered three environmental scans that were previously
conducted by various organizations. One was the Connecting for Health
Environmental Scan of 2003. Another was the National Cancer Institute
Bioinformatics Grid (CIBIG), and the third one was conducted by AHIMA.
And when we reviewed those scans, what we looked at were the various
products that were on the market and the functionality of those
products. And what we, the intention of the environmental scan was to
get a bidirectional view of the marketplace.

First by looking at the products, we could say, "Does this validate the
target definition? Are there ‑‑ does this definition, if you applied it
to the various products on the market, match?" And if it matched, then
we knew that the target definition was more or less validated, and if
they didn\'t match, then we said, you know what, there are some things
out there in the market that we just didn\'t account for when we went
through our target definition process. So let\'s add that back. And so
it was a refinement process at that point.

And we found that because of the increase in maturity of the PHR
products in the marketplace, we in fact did have to change some of our
consensus decisions or at least update the consensus decisions. The next
step, which took a substantial period of time, it was about a 6‑month
period of time, is we then had to look at a functional model. We wanted
to develop or update a functional model and we found that the 2003
version of the functional description that was published by Connecting
for Health served as a very useful tool. At that time Connecting for
Health 2003 version had 64 discrete functions for a PHR. And as the
Workgroup began working to update this functional model, what it did was
it went back to the consensus decision document. It reviewed. It
remembered what it had discussed during the environmental scan, and then
it said, now, how does that cause us to change the requirements of a PHR
in this functional model, and we found that through this 6‑month
process, the 64 functions can be, could have been or were collapsed to
60 functions in the HL7 PHR functional model. And if you turn the page,
you\'ll see 2 of the 60 functions for the PHR functional model.

You\'ll see first that there\'s an ID column, and then the function
name. A description of the functions and then some examples that more
clearly elucidate that function and in that last column you\'ll see how,
how does this function relate to the electronic health record standard.
The value of doing this model, if you look at it on a row across row,
you\'ll have a clear description of what that particular PHR function is
supposed to do. When you look at the aggregate 60 functions, you\'ll see
a rather comprehensive view of a PHR. So in essence it describes a
complete functionality of a personal health record. That last part is
important for the information health exchange. What the last column
does, it associates the PHR function to the EHR function, so when we do
the health information exchange, we know that that function in the PHR
is going to interact with this other function in the EHR. And then what
the next step that will follow is to get down to the data level and say,
"Okay, what\'s the data in the PHR and what is the data in the EHR, so
it can be exchanged?" But by looking at this from the two model
standpoint, what we\'ve accomplished is the ability to look in a big
picture fashion and to ensure when we talk about health information
exchange, we\'re relatively sure that we won\'t have missed, you know,
some of the functionality and some of the data that needs to be
exchanged.

I will come back to this slide in a few minutes. If you ‑‑ the next, so
the Workgroup finished this activity on updating the functional model
about a month ago, and it is in the process of completing the assignment
of priority and optionality values to each function, and that\'s
consistent with what was done with the EHR system. Those three values
are essential now, essential future, and optional. In essence when you
look at all 60 functions when you see which ones were assigned essential
now, for all intents and purposes that forms a minimum function set for
the PHR. So if you look at the essential functions and you were to say
any model of a PHR, whether it\'s stand‑alone, whether it\'s tethered, a
portal, an ASP model, those functions would be the functions that you
would expect to find across all those variations and then the optional
would be things where there may be some value adds or something that is
pretty far off into the future but not necessarily essential. The
essential future value is assigned for those functions where it\'s
essential in order to operate a PHR, but there\'s some recognition that
there\'s still some maturation that has to go either on in the industry
or technology and you just can\'t implement that function just yet. But
the value of that essential future is that it puts that function on a
road map and it says when that technology will mature and we\'re able to
do that, then this function can be changed to essential now. What it
does is, it provides guidance to the industry and to the vendors about
whether, when to implement that particular function. That work is being
completed. And now we\'ve begun the \-- what amounts to the hardest step
and that\'s to develop performance criteria for each function. A
standard is not a standard unless you have something to which vendors
have criteria to conform to. And so if you take a look at the next page,
let me give you an idea of some of the performance criteria for the very
first function. I\'ll give you a second to glance at that.

**[\>\>NANCY:]{.underline}**

While they\'re doing that we have about 2 minutes to wrap up your
testimony.

**[\>\>DON MON:]{.underline}**

If you look at the performance criteria, you will see that there\'s a
specific, there\'s a specific format and some of these may seem mundane
to you. But a lot of them are set up in such a way that says these are
the basic things that that function needs to do. But as a set up, take a
look at the first three. Yes, demographic data needs to be captured
retrieved and stored and so on. But if you look at #4, where it says the
system shall provide the availability to update and track the update
information, that\'s consistent with what a lot of employers and vendors
have said, where you need to be able to say what data has been touched,
how has it been updated and who has updated it. And that\'s different
from #6 that says the system may keep track of demographic information
over time. What that says is you can\'t write over the data. Somebody
mentioned the notion of a married name. So Liz Taylor would be Liz
Taylor, Liz Burton, Fisher, back to Liz Taylor. So you\'d have basically
seven records there because you\'ve tracked the updates over time and
nothing is overwritten.

Because my time is running short let me continue on. There are, there\'s
a PHR glossary that was developed by the Workgroup. And it identifies
some specific terms for specific uses. So for example, you\'ll have a
PHR account holder who may be the patient. Understanding that if you had
an application where you had, you can use all of your family, each one
of those has an account of which I may be able to be the authorized user
to access or the proxy. This describes in a granular fashion the
functionality of personal health records. It can be used as a framework
for a number of use cases. Links directly to the health model so we\'ll
be able to understand the information exchange between the EHR standard
and PHR standard. And just as CCHIT has used the HL7 EHR system criteria
for certification, should there be PHR certification, these criteria can
be used as well.

And my time is up so I thank you very much for the opportunity to
testify before you.

**[\>\>NANCY:]{.underline}**

We thank you for your comments we wish we could indeed give every
panelist more time. With that we\'d like to welcome you Dr. Elaine
Blechman. Thank you for your remarks this afternoon.

**[\>\>ELAINE:]{.underline}**

So I have until 2:26.

**[\>\>NANCY:]{.underline}**

That\'s about it. 2:25 so we have questions.

**[\>\>ELAINE:]{.underline}**

Thank you for this opportunity to discuss consumer empowerment via
personal health records or PHRs. I\'m a professor of psychology at the
University of Colorado Boulder, the Co‑chair of the HITSP Empowerment
Technical Committee and I\'m a Principal in Caregiver Alliance Web
Services, which hosts online consumer controlled interoperable PHRs for
long‑term care recipients and RHIOs.

A PHR corresponds to a patient\'s unique record in an EHR. Software
systems with various architectures and functional capabilities are
currently rather indiscriminately called PHRs. In Table 1, I identified
four types of available PHRs, and that is on the last page of your
handout of the testimony. View, tethered, free‑standing and what I call,
and our committee now calls, consumer‑controlled interoperable or CE
PHRs. Since 1998, six papers have recommended capabilities for EHRs and
PHRs that would benefit individuals, including the Institute of
Medicine's influential key capabilities of an electronic health record
system. Elsewhere I\'ve summarized these recommendations in five
categories. Consumer controlled data content, data storage and
retrieval, interoperability and workflow coordination, and I should say
at this point that this testimony is excerpted from a paper that\'s
going into the American Journal of Public Health. Feel free to give me a
business card and request it and I\'ll send it to you. I should also
mention that what I\'m going to be saying from here on in, in respect to
testimony, is with input from Charles Parisot, Co‑chair of HITSP CETC,
and Mike Glickman and John Donnelly, facilitators of the committee.

So as I said, looking at the recommendations for PHRs, I came up with
five categories. And those don\'t particularly, at least a few of these,
data content, storage retrieval and workflow coordination, don\'t really
differentiate between the four PHR types shown in table one. For
example, any type of PHR could offer a medical summary encrypted data
storage or information about disease management.

Now to the question of what are the most valuable features of a PHR for
individual patients. So here\'s the key capabilities of a PHR system as
I see it. Consumer‑controlled. There\'s going to be two I\'ll mention.
One is consumer‑controlled, that is potential for granting specific
information access to all the people the individual trusts, and to no
one else. And so that is often called a combination of privacy and
confidentiality. And interoperability. That\'s the second key
capability. Potential for automated data exchange with all
standards‑based EHRs and other so‑called edge systems that the
individual trusts. These two capabilities, consumer‑controlled and
interoperability, differentiate significantly between the four PHR types
and parsimoniously represent the key capabilities of PHR systems.
Free‑standing and CE PHRs offer consumer control in different ways and
in different degrees. Tethered and CE PHRs offer interoperability in
different ways and to different degrees. Both could exchange continuity
of care documents with other standards‑based EHR, PHR or other so‑called
edge systems.

Now to the question of how interoperability can be achieved. Well, start
with, let\'s look at these four types of PHR systems. The view PHR
first. The Institute of Medicine in \'03 defined it as a view of
selected information in an individual\'s EHR. View PHRs are widely
accessible from Web sites, physicians, hospitals, insurance plans. The
view PHR are often provides individuals with opportunities to enter or
update information that only they possess: Emergency contact, allergies,
current health problems. The View PHR offers a glimpse into an
individual\'s record in an EHR but lacks standards‑based
interoperability. Free‑standing PHRs, second type, supply individuals
with Web pages or PC‑based storage for input of personal health
information and privileges and often include a removable media option
such as the USP stick so a person may, for example, enter critical
health information into a Web accessible medical summary form download
it to a USB stick on a lanyard so it\'s available to emergency
responders.

A free‑standing PHR offers what is sometimes called a sneakernet based
type consumer control. With it, individuals manually share their story
of personal health information just with the people they trust but they
share all of it because there\'s no discriminating within it. The third
type, tethered PHRs, offer a view in selected information in an
individual\'s record in a health database. When the individual enters or
updates information in the tethered PHR this information is immediately
accessible to all of the individuals in-network providers. A tethered
PHR offers interoperability, a glimpse into an individual\'s record in
an EHR equipped with standards‑based interoperability. Finally the CE
PHR. The Markle Foundation in \'03 defined what we call the CE PHR,
consumer controlled interoperable as an, I\'m quoting now, electronic
application through which individuals can access manage and share their
health information and that of others for whom they\'re authorized in a
private, secure and confidential environment.

This is an Internet‑based set of tools that allows people to access and
coordinate their lifelong health information and make appropriate parts
of it available to those who need it for ‑‑ and I\'m adding for the time
they need it. Tang and Lansky, I know you have an article in your
material. They called it such a holy grail. It provides individuals with
tools for two important processes. Controlling access to their personal
health information, whether the information is stored in the PHR,
pointed to by the PHR or stored in other software systems. And related
to that controlling access, the individual can establish and maintain
granular unique role and relationship-based human user interfaces with
access to the personal information. You might want to ask me later what
I mean by that. So secondly, the first tool that is I just mentioned
controls access. There\'s actually a set of tools within the CE PHR. The
second is for automatic exchange of information with any EHR or software
application employed by people they trust. So the authorization is not
to a system, it\'s to unique identified authenticated users of this
system. The control and interoperability means that individuals
determine which human users of standards‑based interoperable EHRs have
privileges to access their personal information.

Quite quickly, about, to give you a sense I\'m going to skip through
some information. I want to get make sure I address your questions. But
PHR systems are as of right now a relatively unknown, certainly
unstandardized product just as EHR systems were in the late \'90s.
Through a variety of good events, HITSP has technical committees which
are in the business now of selecting and harmonizing standards for a
sequence of use cases that they\'ve identified as consistent with NHIN
rollout. The first use case for the consumer empowerment technical
committee bears a consideration for the moment. It involves an employee
who involves his or her PHR to transmit registration summary and medical
information often in a paper form in a physician\'s office\'s clipboard
to a provider EHR. And the use case doesn\'t indicate which type of PHR
is involved. This isn\'t a defect in the use case but a reflection of
the PHR construct. The use case does require for the first time a
consideration of which type of PHR alliance individual and national
interests in the NHIN.

And skipping over some things you can read about later, I will just say
to you that we\'ve determined that the PHR, the only PHR that suits this
consumer empowerment use case and we believe will suit others as well as
use cases which we hope to see in the long‑term care arena, is what
I\'ve identified for you as the CE PHR system.

Regarding the awareness of consumer engagement and a related request of
health literacy, I\'ll tell you my own real world experience centers
around a CE PHR system used by individuals with chronic illnesses and
disabilities and I\'m going to just mention that, in terms of
understanding the needs of these consumers, I think very often of a
mother who is a good friend of mine who spends most of her time taking
care of teenagers who are wheelchair bound but in her free time she
advocates for disabled people. Continuing in the vein of understanding
what consumers need and getting into some of your other questions,
regarding marketing research, let me say consumer awareness requires
engagement, a marketing effort that follows not precedes stages of
research and development. At each stage, an independent body answerable
to technologists, consumer advocates and social scientists should
evaluate the results and revise steps accordingly. A standing committee
of medicine would seem ideal given the IOM's dominance in health
information technology policy studies. There are a series of steps that
would take place in such an R&D effort, there are four stages.

In answer to a question that everybody thinks they have the answer to
already. And that is if a PHR system is the holy grail that will improve
the quality and outcomes of health care potentially for people with
chronic illnesses and disabilities. Will it contain spiraling Medicare
and health care costs? The answer is no one knows. We need the stage
four R&D effort and I also indicate in this effort we definitely should
have as beta testers people who are involved in giving and receiving
long‑term care to those with chronic illnesses and disabilities. Not the
typical kind of computer literate techie beta tester. In the question of
what market and standards should we have I indicate the mandatory
standards should track consumer control over privacy, confidentiality
and the related security, and also interoperability. Beyond that, there
should be, we should allow vendors to come up with ingenious ways of
optionally accommodating to the workflow of consumers. As for
certification, we favor a light weight certification but certification
is of no particular use if there isn\'t independent enforcement of
standards, particularly those that apply to proper labeling and to the
protection of the privacy and security of all of our personal
information.

In conclusion, radical transformation of U.S. health care requires
radical changes in the control that individuals exercise over all their
personal information. Not just what has been designated very narrowly as
PHR under HIPAA. This is an opportune time to position
consumer‑controlled interoperable PHRs as an indispensable means of
satisfying unique and intersecting national and individual needs. I
thank you for this opportunity to comment.

**[\>\>NANCY:]{.underline}**

Thank you. We appreciate your comments. We have questions for the
panelists.

\>\> Thank you so much for your testimony. I\'m not sure if it\'s the
holy grail but it\'s something we should be striving for. My question is
I know there was quite a debate in the industry between ASTM and HL7
that the two sort of competing standards. Looks like it\'s been overcome
with the CCD can you give us update on that is this the holy grail of
standards for PHRs.

**[\>\>ELAINE:]{.underline}**

It is very important to have an appropriate way of using the CCR, which
is a great importance to everyone there\'s no question but the content
with the CCR, with an appropriate way of transmission, is something that
the committee is definitely sort of inserting into plans. It\'s not the
only. There\'s lots and lots of standards that have to be used but it\'s
certainly an elegant way to think about it. Let\'s get away from sort of
particular views of it and just understand that the CCR, CVA, whatever
acronyms you want is a very nice near term solution to the exchange of
information between PHR systems, edge PHR system and EHR systems across
the NHIN.

**[\>\>DON MON:]{.underline}**

From the PHR perspective not the larger HL7 perspective, we actually did
a map of the CCR against the PHR functional model. So if you were to
look at that page, there would be another column over there, and we
found that the CCR can be easily accommodated within the PHR functional
model, which is to say that the CCR serves a purpose well for
identifying a common set of data elements. The question of whether to
implement it through the CCD or through ASTM isn\'t the purview of this
particular Workgroup. So I\'m not able to address that point directly.
But I did want to let you know that this model can accommodate the CCR
is.

**[\>\>NANCY:]{.underline}**

Other questions.

**[\>\>MARC B.:]{.underline}**

The question of different levels of PHRs that are identified and how
they would fit in terms of outcomes of people with chronic conditions,
do you have any sense at this point as to where folks should start?
Where\'s the bare minimum that people should be advocating for. The
reason I put that on the table for people with chronic conditions
there\'s a sense of urgency this may have the opportunity to prevent
unnecessary death and improved quality of life tremendously. We don\'t
want to wait for the proverbial holy grail which may take 10 years.
What\'s the starting point that we should be advocating for that\'s the
beginning point that\'s going to start to give us enough benefit to make
it worthwhile and how would we engage consumers with respect to that?

**[\>\>ELAINE:]{.underline}**

I\'ll take pieces of the question that I recall them. If I don\'t recall
them, if you\'ll allow me time ‑‑ let me start with the issue of the
holy grail. I\'ve said to you the key capabilities are consumer control
and interoperability. Neither of those are beyond achieving that we have
such a system that we use with long‑term care RHIOs and there\'s no
technical barrier, no technical barrier to that. It\'s a marketplace
issue. So be assured that there\'s that. Secondly, in respect to the
people in I\'ll call the long‑term care space need, and I include in
that providers as well as health and human service agencies, local and
state, and individuals and their family caregivers. What they all seem
to want immediately is those very simple things. Consumer
interoperability are what are the bare minimums. That is to say
everything we come up with we can use, the CCRs, the CDC, we can use all
kinds of document sharing, things that you\'re familiar with in other
ways. And you can think about to help you overcome concerns about the
technical barriers, you can think about a PHR system as if it were an
EHR system, okay, a standards-based EHR system, in which the
administrator of each record is unique rather than there being an
administrator for the whole system. And in which access privileges are
regulated by the administrator of the unique PHR individual\'s record,
and in which those access privileges are just a whole lot tighter and
more fine grained audited at the level of the individual so you and I
can look at what\'s happening. So those are the minimums we see.

**[\>\>NANCY:]{.underline}**

Dr. Mon, you wanted to give a response.

**[\>\>DON MON:]{.underline}**

From the PHR model, functional model perspective, the holy grail would
be a system that can implement all 60 of those functions. If you were to
map the 60 functions to Elaine\'s four levels, it would be akin to that
level four. But obviously we understand that nobody is going to get
there tomorrow. And so there\'s why we have that value system of
essential now and essential future and optional. And chronic care is in
I believe in the essential now category.

**[\>\>NANCY:]{.underline}**

Thank you. There\'s a followup question from Kelly.

**[\>\>KELLY:]{.underline}**

I\'d like to add a little more precision on Marc's question. If you were
a patient suffering from chronic illness and you wanted to decide in the
next 6 months what PHR to purchase or somehow get involved with, you
know what the technical committee is going to be coming up in September
in terms of name standards and implementation guidance, what do you ‑‑
do you think, I guess, first of all, with the HITSP deliverables coming
up in two months, how much is that going to advance portability between
EHRs and PHRs? And of course HHS and other people will be doing their
best to implement standards through a variety of mechanisms, but we\'re
trying to ascertain in part how far are we going to be come this fall?

**[\>\>ELAINE:]{.underline}**

Well, we will be getting to the point with the use case that the
specific use case of having that, that\'s the September deliverable, are
the interoperability standards. Our focus has been on interoperability
from the very beginning. And so I don\'t think ‑‑ there\'s no doubt in
my mind but that we will be and Allen Zuckerman is here maybe you should
say something about it but we\'re all interested in the
interoperability. But the consumer use part of things, the reason I
wrote the paper here was I was unexpectedly caught in the middle of what
I felt I needed to take somehow take responsibility for in the
committee, and that is whether issues of consumer control, which to me
operationalize consumer empowerment. There\'s nothing more empowering in
this arena except for if I can control who sees my information or my
children\'s information or my elderly mother\'s information. There\'s
nothing other than that, aside from that it\'s marketing hype. And then,
of course, we ran into the problem that, yes, consumers aren\'t HIPAA
covered entities. And in fact so if we look at HIPAA, which is the only
policy we have for protection of privacy and security of individual
information, then suddenly the PHRs of the view and tether type look
like a big way of getting out of HIPAA, if it\'s a sort of, I don\'t
mean to be disparaging or anything, but some people could view it that
way. So as a committee we had to say, well, if we\'re settling on a
different kind of PHR that is endowed both with interoperability and
consumer control, then we need to have either what I call business
requirements for consumers, just as EHRs have known business
requirements for providers, we need known business requirements for
consumers. Now, I know or I believe your committee is dealing with it at
a higher level in terms of this whole new issue of policy for privacy
and security, but I can tell you our committee is going to be stymied if
we can\'t go forward in the immediate future up until those and through
the September deliverable without the capacity to say, hey, no such
thing as consumer empowered without a consumer controlling privacy and
security. That\'s not a policy issue with a big P. It\'s a conservative
small-P policy.

**[\>\>NANCY:]{.underline}**

Thank you for your presentation and we\'d now like to invite the members
of the next panel to come forward and testify. This will be panel four
the PHR companies that are here to testify, FollowMe, Medem, SimplyWell,
and WebMD.

**[\>\>NANCY:]{.underline}**

Thank you, certainly welcome the members who are on panel four and
though it may be late in the day, let me assure you that the panel
remains very energized around the information that you are going to be
presenting this afternoon. And I would like to begin our presentation by
welcoming Cynthia Solomon\'s son Nathan to share on her behalf.

**[\>\> NATHAN:]{.underline}**

Thank you very much. I would like to thank the Co‑chairs and all the
members of the Consumer Empowerment Workgroup for the opportunity to be
here to testify on the development and evolution of personal health
records and to make observations and recommendations that will enable
consumers to be more actively engaged in their health care through the
use of PHRs. I want to start off by saying my name is Nathan Solomon.
I\'m the CIO of FollowMe. I\'ve been involved since its inception in
1999. And I just want to start out by sort of describing how FollowMe
came about. I\'ll bring you back to the year 1998 or '99 there. FollowMe
really was born as a family business, born out of a family medical
emergency. And the medical emergency was my brother\'s. His name is
Alex. And in \'99 he was admitted to an emergency room in a rural
hospital about 300 miles from his home. He has what\'s known as
hydrocephalus, so he\'s had 18 major brain surgeries. Countless other
surgeries in addition. He has two shunts implanted in his body, he has a
third that\'s floating around, and he was admitted. He was unconscious.
And he was, his doctors were looking really for an ability to treat this
person. They didn\'t know his medical history. If he were to carry
around his medical history, it would probably fill the flat bed of a
truck. (Technical difficulties) but we saw the huge risk there. That
experience, not having the correct information available and basically
during an emergency, led to the development of FollowMe in 1999.
Ironically, technology, specifically medical technology is the reason
that Alex is alive today. But it\'s a seemingly administrative
technology that\'s not been implemented, mainly PHRs and EHRs, that
could put patients like him at risk and any of us really, frankly. Our
hope and continued vision is for a better and more coordinated care for
everyone using PHR technology as a tool of choice in that effort. I\'m
going to continue on talking about vulnerable populations and some of
the FollowMe implementations that we\'ve already done.

FollowMe was really the first of the first generation PHRs when it came
on the scene in 2001. Over the past five years we\'ve upgraded and
customized the platform for very special populations. The first one I
want to discuss is MiVia, a PHR that was developed for migrant and
seasonal workers in California. It\'s most notable in serving vulnerable
populations. It\'s received a lot of press coverage and I\'m sure we\'ve
heard it all before. It was launched in 2003. It now serves thousands of
migrant and seasonal workers and their families, provides a bridge to
the health care system to a population that suffers from chronic
conditions like diabetes and asthma. They carry a photo emergency card
that lists their allergies and information contact information. This
card provides a sense of security for these workers especially when
they\'re confronted with the language barriers and complicated emergency
room settings. Again all in a foreign land for them, and MiVia really
works because we engage the community to help design the PHR to meet
their needs. We used focus groups. We used consumer advisory committees.
We continually upgrade the PHR to address issues such as conditions,
specific health information, insurance and coverage issues, worker
safety, immunizations, how to navigate a complicated health care system.

We use community outreach workers which are known as "promotores,"
workers who come to the community. They explain it to the migrant
community. We\'ve been able to establish a trust between the consumer
and the PHR and more notably between the community and the PHR. To learn
what features and functions are important and to upgrade it to meet
their needs.

Another customization that FollowMe has done is for individuals for
hydrocephalus related to my brother Alex. We implemented it in 2004.
They enter information including brain scans and shunt information and
most importantly turns the PHR over to the patient and/or patient\'s
family, which is going to be a theme here in this talk.

As an early pioneer in the PHR space, our hope is that the technology
will be allowed to unfold organically, creating a tool to help consumers
navigate an increasingly complex and fragmented system. Our fear is that
without adequate guidelines and alignment to standards, the tool will be
hijacked by third‑party interests and consumers will be left in distrust
of health IT and left at risk of having their personal health
information used against them. We believe there are five key foundations
to a successful PHR. First, it is owned by the consumer. Not by a health
care provider, employer, government agency, or not by a health insurance
provider. Second, it\'s controlled by the consumer. In particular, as to
who can input, edit and access the information. Three, it\'s absolutely
secure. In other words, it uses all of the security protocols that are
currently implemented to protect all of our financial information and
other sensitive information. Fourth, it\'s interoperable. I want to stop
for a second and say truly interoperable. Later on I\'ll discuss
interoperability in more detail. It\'s interoperable with EHRs, and
other consumer health information and the consumer is made aware of this
through community education and outreach programs.

Increasing, segues nicely, increasing consumer awareness engaging in
consumer health records, we believe it\'s a proper and beneficial role
of government. It should stress consumers have a right to their medical
information. Many if not most consumers are simply not aware that they
have a right to copies or to view their medical information. I
personally in the past 2 years have seen doctor's office staff and
hospital staff deny patients access to their own information and then
cite HIPAA as the reason why. Community education is important here,
it\'s something we can\'t gloss over. An outreach effort could be
facilitated through participation with CMS or organizations such as the
National Patient Safety Institute and other consumer advocacy groups.

One of the questions was about the important features and functions of a
PHR from a patient perspective. In our experience, we like to work
directly with our subscribers and with clinics and hospitals on a
customized PHR and we have found the most important features in the
first generation include the ability to, and I\'ll do this quickly:
Record chronic medical conditions; Current medications; Allergies;
access to accurate medical information and emergency card information or
having an emergency information card. Things that have all really been
discussed. There are dozens of other features. Most PHRs offer them most
of them if not all of them. We notice every feature we\'ve developed
since \'99 have been adopted by all PHR players since then, which of
course is creates some frustration for us, but I think it makes a good
point here for the committee, which is the market will determine what
the functionality will be. The consumer in that respect, the consumer is
really dictating what the functionality is. Because they will be able to
choose which PHR they want, which comes with a certain set of functions.

**[\>\> NANCY:]{.underline}**

If we could in the interests of time, just get you to wrap up in the
next couple of minutes, thank you. I\'m so sorry.

**[\>\> NATHAN:]{.underline}**

That\'s all right. Let me go on, first off we believe there\'s a role
I\'ll sum up real quick where we believe the government role is.
Absolutely we believe that there\'s a role in establishing a minimum set
of criteria around privacy and security. We believe there\'s absolutely
a role when it comes to interoperability, and I\'ll discuss briefly
about what we think interop is. To us interop means using any PHR with
any EHR. If you can use one PHR with one EHR, that\'s not interop. If
you had a CD that you could only use in your car but you couldn\'t use
it in your house, would you consider that interoperable? No, of course
not. There needs to be a wider interop standard that\'s in place here.

Let\'s see here. As far as certification for privacy and security, it
would be a nice thing to have. It\'s not hugely important. It\'s
probably not going to be something that\'s going to hold up the
widespread adoption, and frankly we\'re concerned a little bit that
certification might be used as a barrier to entry for serving the
special populations that we\'ve already discussed. Basically,
concluding, to sum it all up, we believe the success of the PHR market
will be determined by the consumer, but only after resolution of
security, privacy and interop issues along with a more comprehensive
provider adoption of EHRs. As we see greater information sharing, the
risks of abuse increase dramatically. Security standards need to include
things such as public disclosure and unauthorized data breaches within
hours of discovery. Letting corporations alone determine the future of
this industry is a disservice because the vast majority of corporations
plan for only sequential revenue growth and long‑term plans rarely
exceed three years. We believe the long‑term growth should be the
purview of the government to make sure it grows in an organic way and we
can achieve the holy grail that we\'ve all discussed at the end of the
day. I appreciate being invited. Thank you very much.

**[\>\> NANCY:]{.underline}**

Thank you very much. We appreciate your testimony this afternoon. We\'d
like to welcome now Dr. Fotsch with Medem, Inc.

**[\>\>DR. FOTSCH:]{.underline}**

Pleasure to be here today, particular pleasure to see some of the
members of the committee whom I have the pleasure of knowing. My name is
Edward Fotsch I\'m a physician both by training and 10 years of clinical
process. I run a company called Medem, physician patient medication
business and also in the personal health record business I have the
pleasure of sitting on various committees including HL7 where I know the
committee and I\'m very committee compliant. I\'d like to focus very
tactically not on definitions of PHRs or on principals but on key issues
of who currently uses them why they use them who will pay for them and
how to drive increased uptake I\'d like to do that not because I don\'t
like the other subjects which I do but I now have 13 ½ minutes and I
think those are some of the key additions I can make if I can make any.
I\'d like to note that I did provide some written testimony. It kind of
went on and on and so but you have that. And I\'d like to highlight some
key points if possible. The first is that I\'d like to focus on the
average consumer seen by the average doc. Not the average consumer who
works for large employer who will pay them to fill out an HRA, which is
wonderful but it\'s not the average consumer. And not the average
consumer who is seen by a large academic medical center, because frankly
that\'s not the average consumer either. The average consumer to the
extent they have a health care professional has a health care
professional in the community that practices in a group of docs of fewer
than five who doesn\'t have an electronic medical record. I\'m not
saying that\'s right or wrong, that\'s just the way the world works. So
if you live in that world of nonacademic centers and don\'t have an
employer who is going to pay you to fill out an HRA or PHR, you might
say you don\'t have one; the good news is you do. I bet you have an HR
because every time you go you fill out a paper PHR it has all the
components. It has meds conditions allergies so owe so forth but it\'s
not a PHR in the context we\'re talking about however it\'s a tremendous
leverage point as I\'d like to share with you.

The goal I think of PHRs frankly is not to store and retrieve
information but is rather to better engage consumers in their own care,
whether they are ill or going to be ill, everyone is in one of those two
categories, and to the extent that PHRs can be a vehicle to engage
consumers, that\'s the name of the game. It\'s the name of the game
because health care costs are going up because \-- and you\'ll see a
reference to the 50 percent of the rule. Fifty percent of the country is
obese, 50 percent of medications aren\'t taken, 50 percent of women who
have breast cancer treated don\'t have a followup mammogram done 3 years
later; there\'s massive denial of health care needs. If you don\'t care
about health care if you don\'t want to follow up you sure don\'t care
about health care IT. Engaging customers is actually the absolutely the
holy grail if you got them engaged in the network, you can toy with
programs, prompts and reminders; the question is how do you get them on
in the first place. Our experience says and I think the industry
experience is the folks who are best positioned to engage consumers in
their own care and rank and file consumers are community‑based
providers. I say that both because the national data shows that and the
handouts that I\'ve provided there\'s reference to some Harrison Rx
documentation from a year and a half ago. As well as another survey by
Jupiter that really says that when people are willing to focus on their
personal health, their personal health records they think of it in the
context of their relationship with their doc. Sharing information with
their doc, communicating with their doc, getting information back from
their doc, getting reminders from their doc, if it\'s important my
doctor will tell me. That is the common thought among consumers. Whether
it\'s right or not is another issue.

So in our experience, frankly, if and when in our experience providers
take that paper‑based personal health record and substitute it for an
electronic online record the uptake is consistently over 50 percent in
most nonsurgical specialties. So OB/GYN pediatrics, cardiology, internal
medicine, so on and so forth which compares very, very favorably to
payer- and employer‑based records which frankly have a lot more
information than many of the docs have, particularly the docs that
don\'t have EHRs, but the initial uptake is driven by multiple factors
of consumers if when they call for an appointment they\'re told, "Create
your PHR online, not on a clipboard when you come in." By the way,
we\'ll store it. By the way it will be available for the next provider
of care. Which as I understand it is at the core of the Secretary\'s
vision, which I wholeheartedly endorse, not because ‑‑ not just because
it\'s a great way to engage consumers, because frankly in our experience
it may be the only way to engage consumers. Consumers will by and large
do what they\'re told to do and what they almost have to do unless
we\'re going to write checks to everyone to complete PHRs, which I think
would be difficult.

Engaged consumers, again, we just completed a survey of some of our
users, and interestingly they suddenly have an interest in health
information technology and EHRs for the same reason you all care that
your bank has a computer; you don\'t care about the computer, but
you\'re darn sure you want the money to come out of the ATM. When they
have a window into the value of HIT, and I think other panelists
mentioned this, they\'re more value to likely value HIT because they
care. It\'s meaningful to them. Consumers understand convenience in the
fact they don\'t have to fill out endless clip boards that someone knows
who they are when they walk in the door.

So if the providers are the key, how do you change provider behavior,
and I think that\'s something that this committee and certainly the
Federal Government have a huge impact and already have. The work of CMS
that they\'re going to provide or plan to provide or hope to provide a
data feed to PHRs that docs can use to keep better records and that they
might follow through with the Secretary\'s suggestion of using financial
incentives to drive that behavior frankly has been great for our sales
and I suspect the sales of anyone else who is in the PHR business.
Obviously CMS and HHS are the largest single payers. I think that
they\'ve shown their decisions about incentives influence not just
Medicare beneficiaries but also commercial payers and employers. People
will follow the lead of the largest payer, if there\'s in fact a leader.

In addition, even physicians who don\'t have EHRs have clear benefits
from adopting simple Web‑based PHRs. I mean, having run a practice for
10 years and a 250-physician ITA, I can tell you the docs and offices
hate the clipboard as much as the patients do, but you have to give them
a simple low-cost system that doesn\'t require full-blown purchase of an
EHR and yet is a point on the line to EHR adoption. I want to also
mention that NCQA and JCAHO are comrades in adopt to adopting PHR,
they\'ve called out PHR for member services and JCAHO medication
reconciliation requirement that came in on January 1 effectively
mandates the medication portion of a PHR which is probably if you had to
pick and you\'ve heard other panelists say this one key data element
that helps me see a patient and do a better job it\'s going to be
medications. I focus on primary care because they\'re the ones who see
most of the patients and frankly they\'re the ones who make the referral
decisions to the specialists and the hospitals. If you get the primary
docs using a system they\'ll enroll half of their patients and they\'ll
enroll the entire market because everyone needs their referrals to
maintain their business. And clear incentives that frankly don\'t
require financial incentives but there\'s other incentives that may move
the ball forward. How much time do I have left?

**[\>\> ROSE MARIE:]{.underline}**

\>\> You have about 2 minutes.

**[\>\>DR. FOTSCH:]{.underline}**

I\'ve laid out 12 steps for HHS to consider. I\'m not going to read
through them in the interest of time. Suffice to say that HHS has,
through and the Secretary has, and therefore this committee has,
tremendous power to move the marketplace forward to the extent that you
believe that health care providers are the key for engaging consumers. I
think that the common sense probably tells you you\'re a key the
information in the marketplace indicates they\'re a key. And so clear
written incentives, timelines and partnerships with the other comrades
in arms, and I don\'t mean that at a high level. I mean very a tactical
partnerships for the heart association, with the American Cancer
Society, with AHRQ and I\'ll just stop for one second there. I think
recurring theme that you\'ve heard today is where is the data. Where is
the data that shows consumers can be engaged and where is the data that
shows engaged consumers act differently. One is more important than two
you can change the program but if they don\'t follow then what\'s the
difference anyway. There are studies that can show engaged consumers can
have the behavior change, smoking cessation or weight loss. Big issue is
can you engage the consumers, without showing any confidences, I think a
conversation with the American Heart Association, with some of the work
they\'re doing, as well as others can be helpful in actually documenting
the fact that the dogs will eat the dog food and they\'ll be healthier
for doing it. That\'s sort of a marketplace reference. Who knows it may
be excellent in the veterinary community as well. The timing is now I
think the marketplace is definitely moving. Standards are great.
Standards don\'t create markets. You need markets to create standards
and I think a focus on community‑based docs and the consumers they treat
will in fact drive the adoption that the Secretary and I think that
we\'re all looking for. Thank you.

**[\>\> ROSE MARIE:]{.underline}**

I\'d like to thank you for your summary that pickup presented to the
committee this afternoon in addition to your written testimony. And
certainly the 12 recommendations you made for HHS will be easy to get
directly into them for their consideration. So thank you very much. I\'d
like to now welcome to the panel for presentation James Canedy and he\'s
with SimplyWell LLC.

**[\>\> DR. CANEDY:]{.underline}**

Thank you for allowing me to present to the committee today. As way of
back ground I\'m an associate professor of orthopedic surgery at the
Nebraska Medical Center. SimplyWell was developed at the Nebraska
medical center in 1998 for a very basic need that\'s to decrease health
care risk, improve costs and increase preventive care in our Community.
This has been a cooperative venture that\'s included not only physicians
and, excuse me, health care system but also employers, patients and
third‑party administrators. So it\'s been a group effort. SimplyWell
revolves around a Web‑based personal health record and is implemented at
the employer site. Consumer awareness and engagement in personal health
records requires education about the importance of individual health
management as well as aligning incentives to encourage utilization. We
felt it would be very difficult to educate 250 million Americans all at
one time but it\'s very easy to engage populations that are controlled.
And those controlled populations are at the employer site. And that\'s
how we\'ve made that choice. U.S. health care delivery has traditionally
used disease treatment models where the patient is the recipient of care
rather than an active participant in their own care and we felt that
employer model would also allow us to measure that and monitor it and do
good scientific studies. We believe the personal health record is the
cornerstone of information sharing and engagement. Business, Federal
Government and individuals have all identified health care costs as
their key economic concern.

Final incentives for individual use of PHRs currently comes from
employers in the forms of reduced premiums, health savings account
contributions and lower deductibles. Employers are investing in this new
technology to lower their overall health care costs and early adopters
have having major success as you heard this morning. Tax credits for
businesses and individuals that make this investment would absolutely
increase adoption and Federal pilots for Medicare and Medicaid patients
will determine the success of these models and this population. The
advantage of a PHR to the individual is dependent upon the functionality
and the tools and resources offered. We believe that converting a paper
record to an electronic format alone would avoid duplication. Would
improve safety, but really would not engage the patient. But we believe
a dynamic personal health record can offer integration of past health
information, recommended screening, standardizations, education and home
monitoring. The patient will experience the benefit of increased
compliance with recommended health screens, a better interaction with
their physician, early diagnoses of disease, improved safety and lower
cost. When we first rolled out this program, our board told us: Show us
that this works. And so this is kind of the key to why we\'re here.
SimplyWell currently has 20,000 active users in 49 States. These people
touch the records 2.4 times per month. So we have that data. The
SimplyWell application is populated through employer or insurance
company eligibility files. Once enrolled the individual controls his or
her own personal health record and the enrolled participants are
involved and measured for costs and outcome over time. And we use
third‑party outside people to do that. The third‑party actuarial reports
have shown a greater one‑to‑one worst-case scenario return on investment
in the first year and 4-to-1 return on investment at Year 4. Our alpha
site which is the Nebraska medical center this year just reported a
\$3,500 per employee per year cost differential for those people
enrolled versus those people not enrolled. Their health care costs just
went down \$2 million. There aren\'t many large companies that can
actually say that.

There\'s been a decrease in cost for both low and high dollar claims. A
respective review over a four‑year period at the department of health at
the University of Nebraska has shown a statistically significant
improvement in total cholesterol, triglycerides, HDL and hemoglobin.
This group also showed a stable BMI over a 4‑year period where most of
America is getting fatter. Fourteen percent decrease in sick days, 13
percent in hospital days over time. Self‑reported compliance with annual
exams, mammograms, prostate and colonoscopy have increased 15 percent
over this period. They were developed through focus groups. If you
don\'t ask the people what they want you don\'t know and you\'re going
to develop this in silos. In 1998 we included insurance companies,
businesses, physicians and patients. The information gained from the
patients told us to focus on availability, security, quality and content
of information with a patient‑centric model. The patient centric
approach required that the PHR be owned and controlled by the individual
and that information only be released with their permission. It required
an automated release model under individual control. So the patient can
tell the application who to release this information to authenticate it.
It cannot be dependent on insurance companies or insurance coverage or
employment or personal physician changes. The information must be
accessed continually over a secure Internet.

Secure monitoring for the SimplyWell has shown a thousand attempts per
year against the system with no breach encountered. Should it occur,
it\'s held in separate library lookup tables, in most elementary form,
it\'s doubly encrypted and not identified by individual. Authentication
is used by using multiple unique identifiers and transferred to patient
control with unique user ID and password system. Temporary access is
available with passwords generated by the patient so they can be given
to the physician or family for utilization. The patient centric approach
requires it to be translated in layman\'s terms with explanations of the
problems and allows individuals to take accountability for those things
that they can change and monitor. Laboratory information is currently
integrated in the SimplyWell PHR with similar explanations and common
terms. Efforts are currently underway to integrate pharmacy physician
hospital records. Once the information is available to the patient in
terms they can understand they own it and they become engaged in the
process. This is the beginning of patient involvement in their medical
care.

Once the patient is engaged, the opportunity to offer self‑management
and behavior change occurs. The data held in the record and lab results
allow customized and individual approach to risk management that\'s not
otherwise available. By knowing the family history, personal health
history, laboratory findings and self‑reported risk factors an
individual action plan can be customized right down to the individual
level. This can include physician appointments, laboratory tests,
verified learning, home monitoring, preventive screening exams and
immunizations. For an example, if an individual has diabetes, they would
be reminded they need their appointment for their physician. Eyes and
feet checked need a hemoglobin A1c and it automates and standardizes
that process to increase compliance. It allows reminders to be sent by
e‑mail and phone for compliance. We\'ve chosen to add a human voice to
that process through inbound and outbound calls.

A minimum set of PHR requirements will ensure standardization and
quality of future products developed. The earlier these standards are
formalized the more likely we\'ll see compliance by vendors. Standards
should include nomenclature data requirement, transfer requirements for
interoperability and transportability. Elements for a successful PHR
should be identified by those stakeholders who have a common interest in
an exchange of health information across the care continuum this would
include but not be limited to patients, hospitals, payers to name a few.

Successful PHRs can promote health literacy through verified learning
models linked to the PHR. Health literacy can be accomplished in a
similar fashion by the adoption of PHRs within a community, established
by community‑based education programs.

Interoperability can only be achieved through the use of common
standards such as HL7 and SNOMED. This will allow interoperability
integration from different points of care a set of minimum standards
should be established by the Federal Government or some agent thereof
where they will develop products independently in the market. An example
is emission standards Volkswagen and Cadillac different products that
appeal to different people. The timing of integration is dependent upon
the development of initial minimum standards. Interoperability between
PHRs and providers will not only require the use of health information
systems with common data standards but also a common data exchange in
the given community or region. Certification will be necessary to
maintain a minimum level of service and interoperability. It may be
prudent to start with voluntary standards using test pilots and then
move to mandatory standards with certification over the next five to
ten‑year period as demand for PHRs increase.

Some summary we need to increase consumer awareness, pilot demonstration
projects and incentives for private business to offer PHRs to their
employees. Incentives need to be in place to drive utilization and
adoption of PHRs. Patients and physicians need to be equally engaged in
enrollment and information sharing to improve preventive care and
outcomes. Standards are critical for content, functionality,
interoperability and long‑term sustainability. Thank you for allowing me
to speak and SimplyWell would be very welcome to the opportunity to
participate in this process.

**[\>\> ROSE MARIE:]{.underline}**

Thanks very much for your very interesting testimony and demonstration
of some really very favorable outcomes. We\'ll now turn to Dr. Philip
Marshall from WebMD.

**[\>\>DR. MARSHALL:]{.underline}**

Thank you for your invitation and stamina for sticking around. We\'re
pleased to discuss the role of personal health records. Regardless of
its context, be it within the design of a national health information
network for emergency preparedness or for providing the foundation for
greater health care choice and consumerism, the PHR can serve an
important role as an application that helps the consumer to gather,
store manage and share their essential health data. Gathered from across
multiple providers, systems and data sources, the PHR can support
improved treatment, benefit and provider decisionmaking and enhanced
communication with care providers. The PHR is an enabling technology but
not an end to itself. The PHR is a vehicle for consumer choice and can
serve as a bridge across a fragmented health care system.

Some of the key points that we believe are important to make today
include the following:

While a personal health record can be created in a variety of ways using
variety of data sources the objectives remain the same: To enable
consumers to gain insight into their health history in order to provide
a better context for treatment benefit provider decisions and to allow
them to have a health history to make decisions especially when the is
not available. And to support consumer ability in across the system.

The consumer should be involved in the process. Many things can support
that engagement, including populating their health record with
electronic data sources, providing value added functions and decision
support and even providing incentives for participation. Consumers can
be trusted as full participants in the health information exchange
process to apply their discretion on who to share their personal health
information with and how best to share it.

A consumer centric health record is an essential enabler for consumer
centric choice and supportive decisions within the context of a health
care encounter as well as outside the context of a health care
encounter. While the value of the PHR was in the context of a health
care encounter is often discussed the value outside the context of the
encounter might be even greater. In a private sector the PHR today is
serving as a secure and actionable deliverable set. It supports greater
consumer involvement in their health and health care. Because of the
value of a PHR is so great outside the context of a given provider, we
believe that a PHR that is tied to a particular care provider or the
system used by that care provider could be disadvantageous to the
patient or consumer as well as to the care provider. It could be
disadvantageous to the patient consumer because it could decrease their
mobility and choice within the health care system. It doesn\'t
necessarily provide information from across the health care continuum
and may not provide the foundation for broader consumer decisionmaking.
It could be disadvantageous to the care provider because many care
providers are unprepared to offer PHR information. And especially one
that has a view across the person\'s life and across the continuum of
care. True consumerism should include open market based of care
providers based upon quality and cost and the PHR can be an important
enabler and should never be a barrier to that freedom.

The NHIN and RHIO efforts should contemplate the potential of the
consumers using to connect into the NHIN and we recognize data
portability are issues to resolve. Possibly reflective is the challenge
of the pilot projects announced to date in order to support if consumer
empowerment use case are really only enabling closed access to the NHIN
allowing them to access it through the tethered system we believe the
barriers can be overcome. Let me share some examples how they might be
overcome. When it comes to user authentication for example a valid
identity for the consumer should be able to established not only by a
care provider but also by other trusted parties. We believe at the very
least that covered entities including health plans and plan sponsors or
employers and the services and systems that they employ should be
trusted to validate the identity of a consumer. It\'s important we
believe to recognize the role of plan sponsors, again employers, in the
national health care landscape, especially on the topic of
authentication, employers know their people and they must be able to
serve as a source of member information. They certainly do so today when
enrolling people in health plans.

On the second issue of data portability. We believe data portability is
critical for our health care system, but in particular it\'s critical
for taking a longitudinal personal oriented record that can support
consumer health care to the point of care we believe consumers can drive
the system through their PHR. For example using tokens or similar
mechanisms that express both the consumers identity and their
willingness to exchange data, consumers should be able to use their PHR
as a bridge motivating data exchange with multiple systems including EMR
systems.

And so finally what I\'d like to do is I\'d like to share some thoughts
on the questions that you\'ve all posed. On the question of what is
needed to increase consumer awareness and engagement in personal health
records, in our experience the following motivations are linked to
greater awareness in engagement with PHR. These might include decision
support applications, personalized content and resources, messaging and
other services that may leverage the PHR which absolutely can be quite
valuable. Not necessarily, however, what we would include in the core
definition of a PHR.

So really focusing in on how we define a core PHR, we believe that the
following functions could be most valuable. First, care provider access
in the case of an emergency. Next, automatically importing of data to
reduce the need for data entry, and again I\'ve talked about the kinds
of data that could be imported just a moment ago and then the delivery
of personalized health care information including important clinical
messages like alerts and recalls.

Next on the questions, would a minimum set ensure that the features be
available. Using the definition of a PHR that I listed above, there are
many different applications which may specialize in a particular area or
be designed to achieve a particular goal requiring additional or
inconsistent elements in that design could represent a barrier to the
system implementation consumer adoption and value.

On the question who should identify the most important elements of a
PHR, we believe consumer users and purchaser\'s of PHR solutions
including health plans and plan sponsors should identify the most
important elements of a personal health record.

On the question of, I guess not a question, it\'s a statement. On the
statement of if applicable to your testimony, please comment on how
health and health IT literacy needs to be addressed, I had to get a
little bit of education just as recently as yesterday on exactly how the
words health IT literacy are being used, and so upon getting some more
of that clarity, and if we define it as engaging consumers in the health
care process, then absolutely we believe that the personal health record
is an essential enabler. Health IT literacy starts with the value of
health IT to the consumer, and that value starts, we believe, with
transparency followed by control. It can be supported by a variety of
consumer-facing functions such as through promotional materials, driving
consumer participation, the display of health concepts and the PHR that
are consumer-understandable the delivery of personalized patient
education and drug support based upon the consumer's own needs and
improved condition management.

And I am just about ready to finish up. On the question of how can
interoperability be achieved between PHRs and electronic health records,
we believe that in the ability for consumers to drive the process of
interoperability between PHRs and other systems that the consumer\'s PHR
is the most logical vehicle for essential health data between the points
in the continue of care continuum to allow them to apply discretion to
the data being shared and augmenting the information when necessary we
support the emerging standards in particular CCR, CCD and HL7 messaging
standards for facilitating this exchange. However, in our experience,
most PHR-EHR solutions announced to date have been tethered concepts
whereby the identity is held closely in the environment and the
interaction with the data is only within the context of that provider\'s
Web site. An alternative is to identify a token that can serve as a
bridge between the various EHR systems and their own EHR. Such a model
is attainable we believe within the next 12 to 24 months. On the issue
again of interoperability, so that all providers the patient receives
health care services from can participate in this process, we believe
again that consumers can drive interoperability with data collected by
providers across the health care continuum and using the mechanism I\'ve
described, we believe consumers can bridge those multiple providers.

**[\>\> ROSE MARIE:]{.underline}**

If we could ask you to wrap up.

**[\>\>DR. MARSHALL:]{.underline}**

I\'m sorry?

**[\>\> ROSE MARIE:]{.underline}**

If we could ask you to wrap up.

**[\>\>DR. MARSHALL:]{.underline}**

And in fact that\'s a good time to wrap up. So in closing, thank you for
allowing us to participate within the national health care system. We
stand ready to support the U.S. Department of Health Services and AHIC
and the Workgroup in this important initiative.

**[\>\> ROSE MARIE:]{.underline}**

Thank you very much. And thanks to all the panelists for all their
comments and their insights into where this field is going now. We\'ll
take 10 minutes for discussion. We\'re going to make it a little shorter
because we have a large group of people who wish to give testimony at
the end. So if we can make our questions short and answers even shorter.
Who has questions?

\>\> Thank you for your testimony, that was valuable and useful to us.
One question I had for you is as you talked about providers being the
ones to do this. I guess one of the questions that came in my mind how
is how does it work into the workflow. Many are busy and have demands
and we hear difficulty trying to integrate electronic medical records
and other things into their practice. While we hear from research
consumers who see value there, also how do you ensure that information
from multiple care providers may be integrated into this. How do you
kind of incentivize providers to fit it into the workflow and capture
the information that would be needed that would be valuable to a
consumer?

**[\>\>DR. FOTSCH:]{.underline}**

Great question. Really two. One is how do you adopt it into the
workflow. Frankly the current workflow couldn\'t be worse so everything
is better. The current workflow is nothing to do with the doctor you
don\'t hand the clipboard to the doctor. I practiced for ten years
nobody handed the clipboard to me. If they had they wouldn\'t do it
twice because the doctor doesn\'t handle the clipboard the
implementation of PHRs in the community practice doesn\'t involve the
physicians\' workflow at all. It involves the office stack workflow.
Having the patients completed typed more complete before they hit the
door, speeds upward flow. To the extent it creates a network, it\'s done
online it increases office efficiency and to an extent the patients like
having a transport ago record by the doc. It improves marketing. And it
drives revenue. So the fact their liability carriers are promoting it
doesn\'t hurt either. So unlike an EMR, which mandates a change in
physician workflow, ultimately for the better but it always takes time
to learn a system. PHR is can be implemented in the community workplace
with no break down in workflow. As to other sources of data, the key as
pointed out standards based interoperability, the sources have to be
available. Integrating with EHRs is important, but most docs don\'t have
EHRS. The valuable source of data as any been pointed out are the health
plans and pharmacy data from the PBMs. Getting those data feeds, and I
would include CMS data ‑‑ getting those feeds into a PHR would be great
but let\'s keep in mind the current standard of care in the United
States is a blank clipboard with the patient scraping out a bear minimum
to get in to see the doctor. It\'s a step forward, not perfection. But
it\'s clearly an improvement in physician workflow adoption not
particularly difficult. Lastly as far as incentives, I mentioned some
that clearly Federal Government can put incentives both financial and
nonfinancial that would move the market forward very rapidly.

**[\>\> ROSE MARIE:]{.underline}**

Other questions?

\>\> You mentioned there\'s a huge need as well as the rest of our
physicians recognize this as well for the translation of personal health
information for users. Do you see this as a national standardization and
if you do, who would be the approving body, since our patients move
doctor to doctor or health care plan to health care plan how do you see
that working that you don\'t define a word a certain way and another
provider uses a different terminology for a patient population?

\>\> I think that\'s critical. And of course SNOMED is moving forward in
that fashion. I\'m sure there\'s probably other groups that are working
toward that and sharing that information with vendors and giving us
those minimum standards will help us enormously.

\>\> Could I also add something?

**[\>\> ROSE MARIE:]{.underline}**

Sure.

\>\> I think it\'s important to recognize, though, that consumers and
care providers do refer to things somewhat differently. If you\'re
dealing with billing concept sometimes ICD9 code concepts can be obscure
with a lot of exclusionary clauses if you\'ve ever read them. So
translating that if you\'ll leverage that and transform it for the
consumer is extremely important. However losing any of that coded data
would be horrendous because you want to translate any given concept for
the audience that you\'re serving, whether that\'s for the consumer or
if the provider frankly has a view into that PHR. So I\'m sorry to
interrupt.

\>\> I\'m wondering if you could share with us some of your business
marketing expertise. I think as we\'ve been charged with one of the
issues of adoption across the country, some of the issue for us becomes
what groups do you market to and I think as we\'ve heard the spectrum of
presentations today, sort of strikes me that we\'re dealing, we\'ve
heard sort of issues of wholesale versus retail marketing issues. And I
wonder if you might share whether they\'re mutually exclusive should we
think retail or more wholesale, what\'s your perspective on that
conundrum for us?

**[\>\>DR. MARSHALL:]{.underline}**

I\'ll be glad to start with that. You know, our market is the employer
and I think the people that will buy this and utilize this are the ones
feeling the most pain. And employers are seeing double digit increases
in their health care costs along with the other pressures it makes them,
you know, an unsustainable business. Many people are getting out of the
health insurance game. And that\'s how we chose to do that. We did it
through brokerage arrangements. It allows the broker to bring a new tool
to a company to lower their health care costs and it also has the
secondary benefit of improving the health of the employees, which adds
to secondary cost improvement with the corporation.

**[\>\>DR. FOTSCH:]{.underline}**

I wasn\'t sure you meant marketing from the wholesale or retail or
retail side so I\'ll comment quickly on both. On the wholesale side, in
terms of who delivers the PHR, the people who pay the bills,
self‑insured employers and health plans clearly have an incentive to
engage them better in their care. A better engaged consumer spends less
of someone else\'s money. I think they\'re reasonably engaged. You\'ve
heard testimony about tax breaks. Providers are disengaged on this
subject until certain tools are brought to them that they can easily
implement and modest incentives that don\'t require full EHR adoption
but move the practices toward EHR adoption which gets into that PHR-EHR
interoperability are key incentives. On the consumer side the key market
is women in their third, fourth, fifth decades. There\'s multiple
information that shows they\'re the caregivers, they take care of
spouses themselves and two sets of aging parents. What\'s lacking in
that case is the Oprah Winfrey effect. If Oprah got up and said only a
irresponsible mother would count on her recollection of last tetanus
shot of my three children, my husband taking his medications and gosh
knows how many medications that grandma and grandpa times two take, if
that got into the domain of the consciousness, you\'d move the demand
and uptake, demand from the docs and uptake. But missing around the
table, representatives could miss that. Someone could call Oprah. That
would be powerful. If the Heart Association did, she\'d answer the call.
I think there\'s a lot of people behind us and I think the Secretary and
this Community can really rally those folks and move the ball forward in
terms of that. At a relatively low cost.

\>\> We really believe the marketing has to be from sort of a bottom-up
perspective it cannot be a top down directive. We believe it starts with
the consumer and ends with the consumer, and while we currently are
experiencing ‑‑ and that\'s why we really believe it starts and ends
with the consumer.

**[\>\>NATHAN:]{.underline}**

I\'ll echo that a bit from our perspective whether it\'s a sponsored
personal health record by the employer, payer, whether it\'s direct to
consumer or one that\'s offered on behalf of the care provider, there
really are two things that must be true. The first, I think, is shared
among them. That is the principles of the personal health record. That
includes, that it does reflect the continuum of care. It\'s consumer
controlled and it\'s secure among, of course, many others. But the
second is value. It needs to provide value to the consumer. The truth is
that all of these models have the chance to provide value within the
employer context, the health plan context, direct to consumer as well as
within the context of a care provider. The marketing differs between
them. The incentives, the drive for consumers differs between them but
the principles from them are the same in our experience and largely
should be.

\>\> Based upon your experience with the migrant population and then the
other panelists that may also have experience with this, what would be
the two or three takeaways that you would have for us in terms of making
sure that whatever we move forward with is inclusive of non-English
speakers and other culturally appropriate delivery of these kinds of
services?

**[\>\>NATHAN:]{.underline}**

Fear of government, something that would come in with the government
implicitly and possibly researching their status and once we overcame
that hurdle, everything really fell into place. And promotores, the
ability to have people within the community communicating, that was key.
Just having us come in and say it it\'s not good enough. I think you\'ll
experience the same thing when we try to roll this out more widely.

**[\>\> ROSE MARIE:]{.underline}**

Others on the panel?

\>\> That\'s been our experience. It isn\'t the words. It\'s the
culture. You need an internal champion from that culture to take the
message out.

**[\>\> ROSE MARIE:]{.underline}**

Marc and then Robert.

**[\>\>MARC B.:]{.underline}**

Yes (inaudible) not directly related to some of the testimony you gave
but Dr. Fotsch, you raised a heart that\'s near and dear to my heart
that\'s the issue of public action model. You alluded to tobacco. If you
look at some of the campaigns our patient advocacy agencies have done to
change social behavior around health activities, it\'s perhaps the most
cost‑effective way to engage patients and family caregivers. I was
curious as to your thoughts on that.

**[\>\>DR. FOTSCH:]{.underline}**

If you look at the folks at least the one I\'m aware of, the ones that
have come out and endorsed the concept of personal health records
without ‑‑ (cell phone rings) excuse me.

(Laughter)\
You love technology. Without endorsing a specific vendor, even a
specific model. The key is that you have too many disparate voices right
now I think and too many people who are focused on their corner of the
world. For example I may care about smoking cessation, they can be
applied over a network if you know the smokers. I might not be willing
to tell my network because I\'m concerned about it. But if you can get
consumers engaged there\'s smoking cessation. If you back it up you need
record and network to do it. The Heart Association has their goals and
Cancer their goals and ADA has their goals. So I think if ‑‑ this is
sort of Marketing 101. We should have the Pepsi fellow come back and
give us our key tag line, but everyone\'s boat will be floated across
all of these public health goals and employer goals. Engaged consumers
can be directed to a consumer portal. That\'s a model definitely taking
off. There\'s a lot of fragmented efforts and there needs to be a more
unified effort that says, here\'s the value of the PHR, by the way, this
will help you stop smoking, care for grandma, access your record in
Beijing, but those are submessages over a primary message that says you
ought to have and control your own record however you get that.

**[\>\> ROSE MARIE:]{.underline}**

Robert.

**[\>\> ROBERT:]{.underline}**

Maybe to build on that, a little over a week ago, CCHIT announced a
certification of the first 20 EHR vendors. And I want to know from the
vendor perspective on the PHR side, how important would certification
be, would that be one of the drivers you could use to market to
consumers.

\>\> I can go first.

So from our perspective, certification can take on a few different
forms. The CCHIT certification was relatively detailed, but if we\'re
talking about certification with regard to the security model, user
validation authentication model, the standards that are used for data
exchange, both transmission and receipt, if we\'re talking about those
kinds of things that really should be true, if you\'re doing a personal
health record and if you\'re doing data exchange and you\'re doing some
interoperability, you really should be adhering to certain standards
than absolutely I think that\'s the right thing to do to foster
interoperability to ensure we don\'t have any real mess saw frankly if
we\'re talking about security. However, when it comes to features and
functions, this is an early market. This is nascent. And frankly if you
use the definition of personal health record being an application that
gather stores, manages and shares essential health data, there are
different providers of those kinds of solutions which may have a certain
niche view. They may only provide this certainly function or that
function which might be enormously valuable for their consumer users but
yet they don\'t necessarily provide the breath of services that might
fall under a broader certification process. That\'s why I would say our
recommendation would be to be cautious about feature and function
certification. But when it comes to ensure there\'s the underlying
reliability, security, standards‑based exchange, even use of vocabulary
standards, certainly we would be supportive of that.

\>\> We support minimum standards as well and would hope that this would
come out in maybe a voluntary program and advance to a more aggressive
program over time to allow people to catch up.

\>\> Yeah, I think the standards are great as they say that\'s why
everyone has them \-- their own, I mean. I agree completely with Phil\'s
comments but would add that the biggest problem with PHRs right now is
that consumers don\'t have them they don\'t know what they are to the
extent they don\'t have them they don\'t know what they are they don\'t
want them. They don\'t even know what it is. All the standards in the
world won\'t change that, frankly. Now you could adopt standards the
market wouldn\'t move to the extent there are incentives, particularly
incentives from the Federal Government, that\'s the ideal time you say
you\'ll only get the incentive if you have a credited system, and I
think that\'s why the work of Don Mon and HL7 beginning on the Markle
work is important because if you\'re going to have incentives, the
incentives have to be specific enough to know what piece to meet but the
big issue is who is going to bring consumers PHRs in a way they want
them and that they\'ll have them by default. We clearly think the
providers and players can combine forces and make that happen. Then to
the extent you said here\'s the bar, from a standards standpoint, then
people will meet that bar especially if you\'ve tied incentives to it.
The EHR community is chasing those standards because it ties to their
sales. We\'re not quite there with PHRs. But we could get there quickly
particularly with the committee and HHS.

\>\> Certainly when it comes to standards, I think they are important
especially with regard to interop and security and privacy. I echo the
thoughts of others here. We can\'t do it for future functionality. Will
it help consumer adoption? Probably not. Again they\'re not even aware
of PHRs. So really I think after the consumer has been educated the next
question will probably be, from them what are the standards. Is it up to
the same level as everyone else. But it\'s not going to help user
adoption. As far as marketing, again, once everyone knows what a PHR is,
yeah, we'll probably use it on our marketing, and we'll probably have a
little stamp at the bottom of the page just like you see for other
certain patient processes, and some people will look there for it and
some won't. So it will be helpful, but it's really not going to start a
wildfire, though, in terms of user adoption.

**[\>\> ROSE MARIE:]{.underline}**

But one last question. Ross?

**[\>\> ROSS:]{.underline}**

Thank you. Two quick things, but (laugh) right. So one would be the
question that I asked earlier about is the primary function, in your
view, the initial primary function of the PHR, for a patient-centric PHR
to provide doc \-- provider-to-provider exchange of information, or is
it primarily for patient education of their conditions? That's the first
question, and the second question is maybe a little more complicated,
and it goes \-- Philip just dropped the little thing in there about the
PHR identif\-- or giving permission for doc \-- giving identifiers for
providers instead of the other way around. And that kind of gilded this
issue that we're starting to mull over around in HITSP around the PHR
being kind of a RHIO in itself, if you will, so almost like an
inside-out thing where that becomes the central way that information is
exchanged as opposed to other methods of exchange. And I wanted to get
some ideas about the long-term view of that, and if you don't want to
touch it, that's okay, but I'm trying to think about this longer-term
question of if we really can do a fully populated PHR over time,
longitudinal in scope, does it make sense to start turning it around and
making it at the center? So the first question is simpler if you want to
do it first.

**[\>\>NATHAN:]{.underline}**

Sure. Do you want to go down the line, or (laugh)? As far as the
longitudinal \-- the PHR is concerned, we believe \-- we've always
believed that the PHR is the center. It's at the top of the pyramid. It
relies on all the other foundational elements to be there. But
absolutely the PHR, we believe, is the focus, important. Right now, I
think we're still coming to that conclusion, or at least acting like
everyone else is. It's like we're already there and we're waiting for
everyone else to agree with us. The first question I think I already
kind of glossed over, but I'll let the others kind of move on.

**[\>\>DR. FOTSCH:]{.underline}**

As to the first question, I think the beauty of PHRs is in the eye of
the beholder, clearly, and the shortcoming of PHRs is consumer
engagement. And if you look at how consumers define a PHR, they largely
do it in the context of how they can both know information and share
information with their health care provider. And so from that
standpoint, I don't think it's either-or; I think it's both. But the
subcategory is a PHR that can\'t communicate with a provider effectively
clearly loses the second half of your value option and unfortunately
that\'s certainly the case and you know that because a lot of people
have a PHR they\'ll print it out bring it to their doctor\'s office I\'m
sure you\'ve heard this the doctor\'s office says: That\'s really cool,
here\'s your clipboard. We need to bridge that gap. That\'s why I think
the Secretary\'s vision of replacing the clipboard is so essential.

The second is frankly much more intriguing and I\'ll leave it at this,
that the consumer at the end of the day is the user and one way or
another they pay the bill either through their taxes they pay it because
they make less money and therefore their employer is covering the bill
or now the employer is handing the money back to the consumer-directed
health plans sooner or later it\'s hard to run a medical practice if
nobody comes to visit you to the extent that consumers care about HIT,
this becomes consumer centric, they have a window into that, they will
no more go to a hospital or clinic, a lab or a physician that doesn\'t
engage in that network than any of you would go to a bank that doesn\'t
have ATMs. But right now it\'s completely invisible to the consumer. So
the second half is if you make it relevant, and if you put the consumer
in the center, and say I will only go places who know who the heck I am
and when Grandpa comes home from the hospital we won\'t have to wonder
what happened to him. It will be updated in his basic record. Not
necessarily everything but updated. And I won\'t go to an employer, have
a health plan unless they\'ll contribute to this. It\'s the ATM model.
You see it in financial services and various places so anything short of
a consumer-centric model seems to me fails because it doesn\'t harness
the consumer as the driver HIT which is fundamentally what\'s missing
right now.

**[\>\>DR. CANEDY:]{.underline}**

I believe we have to have a very patient-centered and very
patient-focused view of health care if we\'re going to change cost or
risk in our future. We\'ve had a very paternalistic health care system
for a very long time. I had a patient that said are you the doctor that
waited on me last time and that really kind of hit me in the chest. No,
we\'re doing this as a team. We\'re doing this together. So it really
has to be focused on the patient if we\'re going to drive change. And
longitudinally the more functionality you build into that personal
health record and the more interoperability with EHRs and EMRs, the more
useful it\'s going to be.

**[\>\>DR. MARSHALL:]{.underline}**

Just to maybe wrap up, then, in answer to your two questions, the first
really had to do with value of the PHR and you asked first and foremost
perhaps we should focus on the availability of the point of care. I wish
I could help you to come to one answer on that, because the truth is
that the value of the PHR is contextual. If you\'re within a provider
setting and you\'re talking about a tethered PHR yes making sure the
data is available maybe at the point of care maybe at the first value.
In an employer setting, the PHR may provide the foundation for
understanding how much you need to contribute into your health savings
account over the course of your lifetime in order to maximize your
investment potential. In a payer environment, perhaps it\'s helping you
to choose the right high-quality care provider. And in a direct to
consumer fashion perhaps it\'s delivery of proactive programs and
services and information to you that\'s of direct value. But outside the
context of health care encounters, I can\'t provide you with one answer
there; I think it\'s very much contextual. To the second question I know
I\'m echoing the panel\'s thoughts here, but the U.S. health care system
was always about first and foremost the consumer or patient. And
whenever in those small little instances, and we\'ve all had them, the
U.S. health care system has forgotten that, we run into some trouble.
And yet I think we\'re still all about the consumer. But to your charge,
how do you really operationalize that. If you\'re talking about RHIOs,
if you're talking about user validation how do you think about the
consumer, the approach, and the access and hopefully some of the
testimony you've heard today, some of my testimony might give you some
insight into our use of thinking whether it be tokens to express the
identity and willingness of the consumer to interchange data or other
mechanisms, we believe the consumer needs to be in the front seat not in
the back seat. And certainly look forward to working with you to define
how that\'s exactly going to happen.

**[\>\> ROSE MARIE:]{.underline}**

Thanks to the panel for giving us a good bit of information some answers
to some of our questions or at least proposed answers thank you very
much. I\'d like now to begin to receive testimony from those who have
signed in today. This testimony will be one at a time. It will be
rigidly 3 minutes only and we\'re delighted to have that testimony but
we do need to hold you to your time limits. We\'ll begin with Vic
Kheterpal from Care Evolution, Inc. And you'll come to one of the mic
either on the front or the back. One of the two mics from the audience.

Mr. Kheterpal. No? If not, Gary Dickerson from CentrifyHealth.

**[\>\> MR. DICKERSON:]{.underline}**

\>\> I prepared some slides hopefully you have them in front of you in
three minutes. I won\'t go through all the detail. To your question, we
tried to follow your question and format as closely as we could. Clearly
the awareness is to educate consumers by various means to engage key
sponsors to provide various incentives to promote consumers to be
personal health managers for themselves and for the family or others
that they may have within their realm, to promote the development of a
consumer care circle or a care team for each individual. And from that
standpoint that would be centered on the PHR. To promote health
self‑awareness to recognize what is wellness, what are the signs and
symptoms which need care to evaluate coverage and eligibility for care,
to identify qualified providers, to evaluate quality and performance of
current and potential perspective care providers. To evaluate
availability of proximity of services, to evaluate comparative costs,
and to evaluate alternatives. Slide 6, basically looking at the
perspectives as has been suggested many times today that there\'s a
consumer view of the PHR which has terms that they are directly
comfortable with in their native language, and of course from a provider
view we\'re using clinical terms. This is why medication lists often
don\'t make much sense to patients because they can\'t figure out what
they\'re looking at or what they\'re taking it for or who prescribed it
or what happened to it in terms of taking it on a regular basis. Moving
on to question two basically just the centralizing function of the PHR
is crucial. Question 3, Question 4, I think those are fairly
self‑evident. Question 4 basically is who should identify the most
important elements. Obviously consumers and consumer advocates. The
collective health care stakeholders and of course the open consensus
standards development process is a way to bring all those together and
to achieve consensus across those. Moving on to Question 6, which I
think is particularly important regarding interoperability. There are a
couple of things which are particularly important to reference here. One
is a recent HL7 white paper which is coming to terms with
interoperability. What is interoperability what do we mean when we use
that term. This is a survey of 100-plus sources across the industry,
including international, authored by Pat Gibbons of Mayo Clinic. We have
emerging HR model, that gets to the characteristics of what
interoperable health records. That\'s now going to ballot in the summer
ballot period for HL7. Also reference ISO 21089, which is trusted and
information flows. Moving on to Slide 13, interoperability is anchored
or starts at the source. Persistent indelible legal records typically
retained, we\'re talking about EHRs and provider EHRs and therefore
that\'s a legal record of the provider organization. We\'re talking
about PHRs we\'re talking about persistent records or evidence of
consumer actions associated with their care and well‑being. Eligibility
of operability we\'ve identified here also we believe are crucial. In
the first case that the records are traceable to their persistent
ineligibility source which is basically legally formed health records or
extracting sub sets of those records and of course moving on to those
records which may not be traceable back to their source. It may not have
the same level of qualification if you will. We believe moving on to
Slide 14 that current point to point interfaces with transient messages
are not sufficient for this purpose. For the purpose of communicating
legally formed persistent authenticatable auditable records they\'re
simply not designed for that purpose. On Slide 15 we have a list of
standards which are built around health care actions, which we believe
could be put together very nicely into a complete solution for the
electronic health record and the sharing of PHR and EHR data. Questions
eight and nine relate to the certification process which we fully
support and needs to be more than just simply the security functions the
authentication functions the vocabulary so forth we really need to get
into a minimal set of functions for the PHR. Which includes things like
demographics, medication lists, lab results, problem lists, those kinds
of things. So that\'s our testimony. Thank you.

**[\>\> ROSE MARIE:]{.underline}**

Thank you very much. We really appreciate that. Appreciate your
providing it in a concise form so we can review it in more than the
three minutes that we have available today. I\'ll try Dr. Kheterpal.
Deborah McClasky. Claremont University.

**[\>\> MS. MCCLASKY:]{.underline}**

Thank you for taking our testimony today I\'m Deborah. I represent
Claremont Graduate University, Claremont California and the Kay Center
for E-Health Research. I\'m an information researcher with a background
in public health information systems. One of the questions put before
today\'s Workgroup participants is who should identify the most
important elements of a PHR. Our information systems research
orientation leads us to stakeholder view of this question and to the
notion that user driven design is essential to PHR systems. Because PHR
systems represent for many reasons a new type of information system, one
designed to serve individuals not organizational needs. A system
designed should emerge from our understanding of those users.
Information systems researchers consistently demonstrated that user
satisfaction and engagement are greater when that user has had a
meaningful ‑‑

**[\>\> ROSE MARIE:]{.underline}**

Thank you very much. That\'s very useful information for us to consider.
Dr. Adrian Gropper.

**[\>\> DR. GROPPER:]{.underline}**

Thank you. My name is Adrian Gropper. I represent MedCommons, a company
founded to commercialize independent banking of personal health
information. We participate in five standards organizations, including
HITSP. I guess I\'d like to make one single point or one major point.
From the perspective of an independent PHR service, the ONC focus on
certification, incentives and document standards is counterproductive to
consumer empowerment.

Personal health records may not grow from the same roots as the
electronic health records and the good news is that personal health
records will be market driven and evolve much faster if allowed to
evolve than the institutional components of the NHIN. The reason is
simply each interaction between a consumer and a caregiver is an
opportunity for the consumer to express their PHR communication
preference.

As soon as the consumer, as the consumer chooses a PHR, their caregivers
must respect the choice, even if it means processing paper. So the point
I\'m making is consumer identity and privacy have to come first from the
consumer perspective. A consumer with two identities and two PHRs for
whatever reason will choose between them once again on each successive
encounter just like you would if a merchant gives you a credit card or
an identity at a Web site or whatever.

The good news is also that technology standards are already well
underway by very large consumer-oriented companies offering Web
services. They\'re trying to deal with fishing, which is inadvertent
release of information by consumers, and other privacy issues in the
global network. And these technologies help consumer manage their
network identity and ensure privacy without having to rely on Federal
mandates or the benevolence of merchants.

On top of these standards, one can built all the communication and
interoperability things that we\'ve heard so much about. But if you
don\'t build up on top of these standards it\'s a very hard thing to
retrofit them to what\'s going on. So finally MedCommons believes that a
successful information network will require a high degree of trust on
the part of customers because they\'ll be voting each time that they go
to a provider, even if it\'s an existing provider, and the specific
answers that we have to the questions of the solicitation are in the
four‑page document that I\'ve provided. Thank you very much.

**[\>\> ROSE MARIE:]{.underline}**

Thank you for your testimony and for your document. Mark Wallin. ICW,
Inc..

**[\>\> MARK WALLIN:]{.underline}**

I\'m Mark Wallin. I represent ICW. An e-technology company with PHR
called life center is one of the core competency. The company was
founded in 1998 in Germany. I welcome this opportunity to present
information to the Community here and talk about PHR and the
interoperability activities which ICW is involved. In the interests of
complying with the requests to refrain from pitching, I\'ve adjusted a
portion of the submitted written testimony based upon ICW's comments,
and the following is a simple presentation in a high-level overview. A
PHR is being implemented in the European market today. This PHR can
serve as the patient\'s primary system. As a PHR capable of true
interoperability it links patients to their medical providers and
practitioners and enables the efficient exchange of health related
information. With access to the PHR authorized physicians can obtain an
overview of patient\'s history and other necessary health data. In
addition, the inclusion of smart card or e-cards into the functionality
of PHR can enable other benefits, insurance information and other
functionality such as health savings account management with a consumer
perspective via a single card. The interoperable PHR is based on SOA
architecture and technologies. Authorized practitioners and providers
can update data automatically from their management software into the
patient\'s PHR and can gather relevant information from the PHR for
their electronic records. Other authorized health officials who later
view this information will have a more complex picture of the patient\'s
history. Pharmacies and other stockholders are also integrated into the
PHR inclusive network where available data about prescribed drugs their
interactions and possible intolerances can be considered by authorized
users. In addition to lifestyle chronic wellness tools the dataset
provides vital information to physicians here and abroad. It\'s
multilingual, via emergency authorized access which is critical in
places where the patient is unresponsive or in distress.

Finally, recent e-Health News, the network which utilizes PHR has vital
element as connectivity has been referred to as an RIO by an independent
study by the University of Erlingen. I thank for the opportunity and I
am glad to confirm that some of the goals and objectives that PHR for
the stats can be and are being achieved technologically today. However,
business decision and processes must be addressed especially in our
fragmented market here. The activities in E ‑‑ I\'m sorry, the
activities in the EU are flirting with the reality of a fully
interoperable what we referred to earlier as holy grail of PHRs.
Recently ICW was featured in a supplement of the *American Journal of
Medical Quality* under the title of "Electronic Personal Health Records
Come of Age." I\'m happy to engage in any other followup discussions in
future meetings and to learn and share in our experiences from the EU.

**[\>\> ROSE MARIE:]{.underline}**

Can I ask one question, how many patients are engaged in these personal
health records?

**[\>\> MARK WALLIN:]{.underline}**

We have about, we\'re in the six figures in terms of registered PHR
users. So 100,000 plus.

**[\>\> ROSE MARIE:]{.underline}**

And now Russell Davis from SHIRE.

**[\>\> MR. DAVIS:]{.underline}**

Thank you very much. I\'m Russell Davis, president of Summit Health
Institute for Research and Education. I commend the Workgroup for your
work in terms of information technology transference into our
communities. SHIRE\'s focus since its inception in 1997 has been to
serve as a policy advocate and trusted resource to public and private
entities for the elimination of racial and ethnic disparities and the
containment of optimal health for all, particularly underserved
communities. We have conducted research in several areas addressing
policies on racial and ethnic data, language and cultural competence and
informed consent to determine their impact on closing or exacerbating
health gaps. One of our board members, Christopher Gibbons, has
developed a paper which I recommend to you and we reference it in the
full text. He says that the Internet has been implicated in the
causation or persistence of disparities, if it has been implemented
improperly and without appropriate involvement of community‑based
organizations. I also have listed in my full text data illustrative
statistics to indicate the pervasiveness of continuing health gaps, and
I need not repeat them at this time. Relative to your interest in
selected hearing issues, we have the following comments to suggest. In
terms of what is needed to increase consumer awareness and engagement
in‑patients, there\'s an urgent need for targeted and I\'ll underscore
that word, targeted culturally and linguistically campaigns mounted by
trusted organizations that are representative of underserved racial
ethnic and other communities and which are directed toward consumers in
those communities and the providers who serve them.

Who should identify the most important elements of a PHR? SHIRE strongly
recommends that representatives of the underserved community should be
involved, along with others, of course, in this process.

How health and health IT literacy needs should be addressed through
PHRs. PHRs should be used as tools to promote health and disease
prevention management. Information such as medical terms, schedule
reminders. It\'s been covered by other presenters and we\'re certainly
in accordance. However, to bridge the digital gap we need an expanded
definition of what a PHR can be to include cell phones and other
technology widely available in underserved communities.

Should the market be left alone or could vendors compete around a
minimum criteria set for PHRs. SHIRE strongly urges a Federal role in
establishing certification standards for PHR and EHRs for
interoperability for vendor criteria and for certification as has been
mentioned earlier.

Further, in light of well founded privacy and security concerns, the
Federal Government must play a stronger role in assuring the privacy and
security of personal health information. If you think certification is
necessary for privacy and security, interoperability or minimum set of
functionality, is the timing important, is the sense of urgency given
the diversity, complexity and mobility of today\'s population and the
demand for the availability of PHRs at the point of care, and we believe
it is precisely because of this complexity and the diversity and
mobility of our population that our adequate time must be taken to
ensure inclusion of potentially excluded groups in the PHR process.
It\'s also important to note that adoption rates of HIT among all
providers is low. A fact that suggests that public education represents
a challenge that cannot and should not be addressed on a quick fixed
basis.

We have one or two principles we would like to suggest if there is a
moment or two left. We think that the goal of ensuring that most
Americans have access to EHRs and PHRs in the next ten years cannot be
reached unless there\'s involvement, broad spread involvement of all
stockholders. We also believe community partnership is essential, and
I\'m pleased to have heard this echoed several times during this
afternoon. We believe that there\'s a need as a key principal that
consumers must own their personal health data and their privacy and
confidentiality, safeguards are essential specifically we encourage the
Workgroup to work with organizations such as ours to go into communities
where voices are often not being heard. Taking time now to create an
inclusive process will help in the future. The promise of health
information technology and its potential to end disparities in health
care quality can be realized if we proceed as partners now. I heard
someone talk a few minutes ago about internal champions. I like that and
there are such persons and groups to join in the fray. Thank you very
much.

**[\>\> ROSE MARIE:]{.underline}**

Thank you very much. I think given that the department of health and
human services is committed to the Healthy People 2010 goals, which is
one. Elimination of health care disparities, you\'ve brought a very
important message to us today and one we will absolutely take on board.

**[\>\> ROSE MARIE:]{.underline}**

Steven Keeler.

**[\>\> MR. KEELER:]{.underline}**

I\'m with an independent company dedicated to the marketplace, we have
over a half million active PHR licensees across the world. I\'d like to
thank you. I\'m new to the group in this room. I applaud you for your
efforts and just want to highlight two issues that perhaps might help
you advance your mandate. Number 1 is in taking on this massive change
agent called empowering the patient, perhaps critical to come up with a
profile of the characteristics of the empowered patient. What do they
possess? What do they have? How do they act? So that in helping to
deliver on that premise you have perhaps in front of you an ideal,
because it does deal with power. The empowerment is in there and
empowerment implies a transfer of power, perhaps from somebody else to
the patient. If you want to go so far as to ranking pair-sponsored PHRs
versus provided Ph.D. employer or direct to consumer PHRs. Relative to
do they meet the requirements of the patient or that profile. You have
the power that nobody else does but the perpetrator of nomenclature. It
can convey accuracy, transparency, clarity, that certainly we\'ll have a
great role as far as consumer uptake and adaptation both on the provider
side and the consumer side. So I certainly say I\'m overwhelmed with the
magnitude of your mandate and applaud you for undertaking it, because
and to ask you okay don\'t be shy. If you don\'t make some bold news I
don\'t know who else will in this environment. That leads to my second
point and to echo my predecessor who is the patient you\'re the only one
mandated to look all the Americans. We all have our key populations,
some with competing interests, and that\'s, you know, and everybody else
individually, that\'s our role and our job. We have to do it. But you
alone are responsible to look at the broad population and how do you
empower a blind person? How do you empower somebody who doesn\'t speak
English? How do you empower somebody who doesn\'t have access to a
computer? How do you empower the self‑pay, the uninsured? Because
certainly everybody consumes health care. And for many of these let\'s
not say disenfranchised lessen franchised less organized population
groups consumer health cost the most important way. It\'s the part of
entry as we all know. I\'d ask you to consider what\'s the empowered
patient to look at, both the power and who is the patient? Thank you.

**[\>\> ROSE MARIE:]{.underline}**

Thank you very much. Those are very important points that we indeed will
consider. Dr. Mon, do you want to wear your other hat for 3 minutes?

**[\>\> DON MON:]{.underline}**

I want to deviate from my prepared testimony to respond to some of the
questions or to the question Robert Tennant brought up with the four
panelists great question and got right to the heart of the issue. And I
think the four panelists for their candor in our role here at CCHIT is
to gauge the willingness and readiness of the industry for PHR
certification, and I think we\'re hearing a lot of broad perspectives
from the SHIRE consumer advocate person saying you know that PHR
certification is a good thing to Elaine and others saying let\'s start
out with a light weight process. So first let me kind of describe what
the CCHIT certification process has done to date and show some parallels
as to what it can do with the PHR. If you recall, from the strategic
framework of ONC, there was the pay for performance and one of the
things for pay for performance was the fact that EHR should be certified
to reduce risk and to accelerate the adoption of EHRs. As was pointed
out, there isn\'t that kind of parallel incentive with the consumers.
We\'re not paying consumers a bonus for their health care and therefore
we\'re not incentivizing them in that way to use PHRs. But nevertheless
to the extent that a seal like Good Housekeeping Seal of Approval says
something to the consumers, then perhaps certification is something
worth while. And if you liken it to the underwriter laboratory, no
consumer wants to feel like their hair dryer is going to blow up on them
when they turn it on. So to the extent that the certification seal can
be used as a way to give buyer confidence then I would say that
certification might be worthwhile.

There was another dimension to Robert\'s question, and that is that when
you look at certification the way CCHIT has addressed certification for
both ambulatory as well as inpatient acute has never been to look at the
entire system. If you look at the functional model, there\'s over 800
conformance criteria. CCHIT took 264 of those certification criteria. So
it\'s not like the entire PHR would be certified Day 1. There have been
a lot of individuals who have said that some of, Phil Marshall and
others who have said that the things that are worthwhile certificating
right off; that would be things like privacy and the security and other
interoperability that might be the incremental area, the first part of
what certification for PHRs could be. And then as with the other \-- how
CCHIT has addressed certification for the others, there would be
incremental criteria each year. If you take a look at the inpatient
acute certification, it\'s not the entire inpatient EHR that is \--
CCHIT is thinking of certifying. It\'s just the closed loop aspect of
the EHR. So I just wanted to bring that kind of clarification.

**[\>\> ROSE MARIE:]{.underline}**

Thirty seconds.

**[\>\> DON MON:]{.underline}**

Thirty seconds? Let me point you to page 3 of AHIMA\'s testimony and I
don\'t have time to go over it. But I wanted you to specifically focus
on that segment there, because those lists the steps that we think would
have to occur in order to achieve interoperability between PHRs and
EHRs, talks about how a standard like PHR functional model from HL7
would have to be in place for which then AHIC can build upon the use
cases and include other details from that and then it proceeds to
discuss how certification can take place from there.

**[\>\> ROSE MARIE:]{.underline}**

Thank you. Dr. Zuckerman from the American Academy of Pediatrics.

**[\>\> DR. ZUCKERMAN:]{.underline}**

Thank you. I\'m Allen Zuckerman, a primary care physician at Georgetown
University. Speaking today as an individual because we didn\'t get
clearance for my remarks, based on my experience representing the
American Academy of Pediatrics to the CCHIT interoperability and others.
I\'ve distributed written remarks, such as getting their immunizations
and other child health data from their pediatrician, lab results from
the lab, medications from pharmacies and insurance companies employers
and insurance companies can play an extremely significant role in
funding and facilitating PHR but use of the PHR through partnership with
health care providers is really essential to trust and engagement. Web
based and paper based versions of PHR will facilitate sharing and
engagement with providers more easily than USB or other hardware devices
that can conflict with local security. Privacy controls to factor
authentication are also extremely important, but awareness and
engagement is going to depend on use in if context of care delivery. If
the majority of pediatricians provide use and update a standard PHR for
child health records, parent awareness will grow very quickly and the
market will drive universal adoption.

If ambulatory and ER patient need records and offices could use this
electronic clipboard replacement, consumers will get immediate buy in.
Essentially every visit to an office, an emergency room or hospital
requires asking about the medication history and allergies and if every
provider asks for the PHR, consumers will begin to engage. Based upon my
experience, a 9‑year‑old new to my practice, the most important
consumers are the ones that are going to prevent or delay delivery of
care such as missing immunization records or growth records. Missing
test results, uncertainty about the dates of procedures or how to
contact a previous provider can further result in duplication of
testing. Patients have an incredibly poor memory for previous
medications or when they last saw a physician clear is summaries of
everything and index of all health care providers can prevent the delays
that frustrate patients. The ability to add home monitoring of chronic
diseases to have secure communication to secure refills and provide data
on outcomes of care at home are also extremely valuable. A minimum
dataset is essential to interoperability with other systems and without
interoperability a PHR will always be considered incomplete and
potentially inaccurate. It\'s not necessary for all PHR systems to
provide the same set of features and functions as long as all systems
have a minimum dataset of elements that are portable to other PHR
systems and interoperable with other systems such as EHRs or electronic
prescribing. Ideally a patient should only have one PHR but we know that
they\'re going to see many different providers running different systems
and most of them running no system at all. Common minimal data elements
are the key to building comprehensive summaries of key clinical data
elements. The minimal element should be sufficient to stand alone and be
accurate when used alone but additional option enhancements and
extensions are certainly feasible.

**[\>\> ROSE MARIE:]{.underline}**

Fifteen seconds.

**[\>\> DR. ZUCKERMAN:]{.underline}**

PHR has many stakeholders and engaging professional society will be an
important step in partnership. In terms of standards that can implement
the PHR, there are many out there for medical summaries who are making
excellent progress in bringing the various groups together. Not only do
we need to have PHRs portable in either CCR or CCD format but the data
elements must themselves be compatible with the X12s the insurance
companies use the file that the pharmacies use and legacy HL7 systems
that exist in most of the practice management and hospital information
systems today and I can assure you you\'re we\'re making good steps
getting a core registration summary and medication history that can be a
building block for full PHR probably by 2008, with efforts to get the
certification or transfer. Thank you very much for giving me the
opportunity to participate.

**[\>\> ROSE MARIE:]{.underline}**

If it only got you the forms that you need to get your kids to school in
the fall that would be a benefit in itself. Thank you very much. We have
time now for discussion among the Workgroup. And I\'d like to try to
focus that a little bit. One item would be items that we consider to be,
and of course I\'m new to this, so you will no doubt have other ideas,
but one idea would be just identify some continuing gaps that we think
we need to fill in as we proceed in this, as we move forward in this
process. We do have others who wanted to testify today and couldn\'t,
and we are planning, I believe, another meeting in September to be able
to allow further testimony. And your input in between meetings on people
you think that should be included would be very important. But are there
other gaps, things that you all have been engaged in this much longer
than I have. Are there gaps that you should see that we should be
addressing that we\'re not covering.

\>\> Thank you. I just want to say first of all we had some incredible
testimony. A lot of information, a lot of things. I appreciate that. And
I appreciate the organization that went into that. So thank you. I do
want to say there\'s one gap that stands out to me and that is that
we\'ve had a lot of information about the expertise related to health
information technology. Looking at consumer empowerment and engagement,
what we have not had is testimony engaged in public engagement. There
are items such as problems we glossed over what\'s happening in the
health care system to people in terms of mistakes, safety, lack of
appropriate care. We had a lot of information about if solution, which
is the electronic personal health record, and that\'s where I think it
was most valuable today. We did not have a whole lot about making this
salient, which is a critical piece. Those three elements need to be in
place if we\'re going to adequately engage patients and family
caregivers. We need to identify the solution and make it salient. Make
it something that I want to take action around to actually engage this.

\>\> So would you include in that representatives of the communities we
will need to engage as well as some experts in engaging those
communities?

\>\> Exactly. We have a number of organizations that have made this a
staple part of their activities, including the patient organizations and
others. We\'ve also had people have a great deal of expertise in
building out these models that adequately identify the problem for
people who are unaware. A lot of people indicated that consumers are
unaware of this issue. They\'ve framed their problem. They\'ve framed
their solution and they\'ve framed it in a way that says you know what I
want to have this. When I look at some of the research that counsel has
done with patient populations they see it almost as a human rights
issue. I can\'t believe we don\'t have that. Engagement needs to be
mobilized but it needs to go through the arc of public engagement. The
other piece I would put out there less of a gap but more of an issue we
have to consider that is the urgency issue. People with chronic
conditions, they\'re living and dying with these issues every day. There
are many people suffering from medical errors and not receiving adequate
care. But them waiting for the Cadillac version of the personal health
record is not an option. They could benefit from something that is a
starting block now. So I put that on the table.

\>\> And we\'ll talk a little bit more about the answers we might have
to some of the questions we posed. But particularly in terms of gaps.

\>\> Two things, first of all people that know me know that I talk about
authenticating users onto a system. And if we continue to talk about
patients and self‑you need to go to the other networks. They\'re always
going to be second class citizens. So we need to focus on that
particular piece of the technology solution as well as the policies that
go around it. And we may be able to use, and I\'ve talked to Kelly a
little bit about this, some of the other major initiatives around the
country are doing public private partnerships and see how we can
leverage some of the work that\'s going on there. I want to echo some of
what mark said. I don\'t have a sense of today was like drinking from a
fire hose, there\'s so much out there there\'s a lot going on but too
much going on in many ways how do we perceive forward is basically what
you\'re saying. We heard several real clearly messages one from the
young woman about how you engage users and go forward with developing
the technology. That\'s a very good message. The other are communities
we need to reach out to. We heard about many employer‑based and plan
based kinds of things. I\'m not sure that for the populations that we
really need to be interested in that those might, that those are the
right solutions and we need to reach out and figure out and I would echo
that it\'s really important for our, that\'s part of our mission. So
we\'re very happy to help out with that however we can.

\>\> Does seem to me we need to broaden the limit and we talked about
doing that.

\>\> Especially to echo that last point. The brief testimony by
Ms. Lafkey in the public comment section highlighted the issue of user
groups. I spent some time with someone who worked for Apple. One of the
things that hallmarks the company is they really understand their
consumers. They really understand their customer and they build things
for them and by doing that. If we can get a little more input about the
different types of users of these, both the ones that are ready now to
engage in it and the ones that will have to be brought in over time, I
think that would be really useful. And as I think about what\'s ahead of
us we\'ve done this kind of short‑term, let\'s jump‑start something
around the personal health record, the medication history and the
registration summary. Certainly not done by any means but it\'s moving
in a direction if we take a moment to think about this long‑term goal of
are we going to be bold enough to insist upon a consumer owned
longitudinal that they have direct over. And move the market in that
direction. And pick a date a line in the sand that says by 2016, you
know, way out there, that provider you can\'t charge money for services
unless you\'re giving that information fully to the patient. You\'ve got
some time to work on it but better get it done by then. I don\'t know
what my options are. My point about this one is I\'d love to hear from
some of the Federal folk who can talk specifically about what specific
types of recommendations can we make to ask HHS to do something, versus
plead with the legislators to pass a law that does X. What are our
options about things we can recommend and not telling us what we\'re
going to do but what levels can we pull specifically.

\>\> Perhaps what limits are set around these things that we can do.

**[\>\> ROSE MARIE:]{.underline}**

\>\> Yes. Lorraine?

**[\>\> LORRAINE:]{.underline}**

\>\> Just a couple. I think we\'re all one of the things that we\'re all
saying is the user, and I feel almost like having a focus group with
people with real people, whether from the chronic care or migrant
community, we heard things how it would be helpful but I\'d like to talk
to them face to face.

\>\> As opposed to hearing about focus group work that has been done.
Because there\'s been some focus workgroup been done by others.

**[\>\> LORRAINE:]{.underline}**

\>\> But I think it would be interesting for us.

\>\> That\'s a question to raise.

**[\>\> LORRAINE:]{.underline}**

As people who may be developing standards or putting out RFPs for new
pilots. I think it will be helpful to have much more direct links to
what\'s going on.

**[\>\> KELLY:]{.underline}**

\>\> Instead of the representative (inaudible)

**[\>\> KELLY:]{.underline}**

We should talk more about that there\'s a possibility getting more
testimony, more of a dialogue, perhaps in September. But we also could
think about if we were to fund a more market research to supplement our
workgroup process. Whether or not we could as time is available on us,
as we\'re interested, maybe participate more directly if there were a
focus groups. So we could probably have more of a conversation around
that when we get to that point.

\>\> The one word that kept, I mean in my head all afternoon, was the
word incentives. On a number of levels, one, how can we incent the
consumer to want to have a PHR, but secondarily how can we incent
companies to offer the PHR. Because what I\'ve heard ‑‑ what I heard on
one hand was no one trusts the employer. On the other hand I heard the
employers have enormous support within their companies for the PHR. What
I heard as well was they\'re saving money. So maybe one of the things
that this group can do is try to flesh out that ROI for corporations. So
a business case can be made to offer the PHR and not to say that
government doesn\'t have a role, of course it does. But maybe the market
for us, because health care is so expensive, maybe the market can help
drive.

MODERATOR: I know we tried to get some of that. And we can try to get
more, I think.

\>\> We talked today about PHRs and that really is our broad charge. We
really haven\'t discussed today our specific charge, and you know we
need ‑‑ that\'s looming right in front of us. PHRs, I think, certainly
will come along and we\'ll have those, but for right now we do have the
specific charge of this medication history and this registration
summary, and I\'m concerned that if we get too far away from that, then
where we have missed the opportunity to do a little bit more on that
because that\'s right there in front of us.

\>\> I think at the May 16 meeting the Secretary and David Brailer tried
to get everyone to transition to the broad charge so that it\'s really
sort of up to HHS and their partners to try to implement everything
around the specific charge. So the recommendations that we\'ve made
we\'re trying to act on. And we\'re happy to work with everybody.
However we can to really get some momentum. But I think the task now in
front of us is really solely focused on the broad charge.

\>\> I think we\'ve heard a lot of good testimony today around financial
incentives or nonfinancial incentives but we\'ve not done the analysis
about the business models which is related to what you\'re saying, which
I think we probably could through background research and digging around
a little bit more and perhaps some followup with some of testifiers
really try to flesh that out and then the connection to the Federal
policy levers I think will be more apparent, because we could ask folks
from CMS and ASPE and within our shop sort of with the context of the
some of the ongoing genres and even availability of Medicare coverage. I
think afterwards it might be a little more informative.

\>\> I\'d like to make a comment. I know that a lot of our panelists
today really stressed how they felt that the target audience we\'re
trying to get doesn\'t believe, doesn\'t embrace the value of a PHR.
They don\'t know what it is. What I\'m very concerned about is as we
make recommendations, we\'re making recommendations from the payer\'s
perspective, from the provider\'s perspective but we\'re not really
getting to the target audience of what they want. And we\'re going to
make recommendations based on what existing information is out there and
then build a PHR around that instead of really understanding what our
target audience wants. So I don\'t know how we do that balancing act
between leveraging what\'s already out there to get started and as we
give something that\'s useful to the target individual that we\'re
trying to get to.

\>\> Can I ask a question, because y\'all have been thinking about this
for such a long time. I might have guessed that we believe that the
personal health record is a value to a large part of the population and
could improve. We think there\'s value to it and that it can help to
empower the consumer. And there will be target audiences that businesses
will go after, because it\'s worthwhile, employers because they\'ll
reduce costs or people who create PHR systems because they say boy I can
sell to this group and have a company that makes a profit doing that and
that\'s a good thing. I\'m doing good and I\'m doing well at the same
time. And there will be maybe the people you\'re talking about and Marc,
people you\'re talking about that could benefit. We don\'t realize it.
That\'s that group. The others are going to be targeted, I guess, and
ones that we should be focusing on how to get that other part of the
population to understand the benefit and assume it will grow and people
like our vet, you know once he started doing it, is now an evangelical
e-health person, selling it to his fellow vets.

\>\> I think we need to go further than that. Because right now I think
that the information that we have out there is data. It\'s not really
information. I mean even if you put it into lay terms, I mean do you
know what a good blood pressure zone is. Because we color‑coded it it\'s
green, well, how much am I to the red zone put it in context for the
individual. Won\'t get there right away, but it has to be contextual to
the person.

\>\> That\'s a sort of step as a gather for example, at the VA the next
step is not just to hand pickup the stuff which he used very effectively
I must say. But to say I\'m going to make it, aim going to deal with the
health literacy issues. Maybe I\'ll help people to understand what they
need to do. Those are functionalities that some people would or would
not put. That could make them better.

\>\> I want to respond, because I think the clear health (inaudible) is
critically important and without it this would not work. However, it\'s
a somewhat separate issue from engagement. We have seen in closed
systems where they have put very good electronic personal health records
in place, usually tethered to an EMR, still have an uptake that
sometimes is very, very low, under 20 percent. And the reason for that,
again, comes to the art of public engagement. If you don\'t understand
that there\'s a problem that can be solved that you can meaningfully
adopt that is easy, you won\'t do it. And I think that\'s the issue that
we need to figure out how we can create incentives to crack. We crack
that issue with these other components which are critically important,
because without them people won\'t use the product.

\>\> But once it\'s cracked. It will be an intrusive technology, it will
be like highways, water and electricity, we think. We all believe.

\>\> TiVos.

**[\>\> ROSE MARIE:]{.underline}**

\>\> Ross.

**[\>\> ROSS:]{.underline}**

\>\> I know I had four things. But I\'m sure I\'ll repeat it. At our
meetings I\'m sure you\'ve looked at PHRs. Continue to look at the one
you got today. You can test drive. One of the things you\'re talking
about what does the blood pressure mean are exactly what they do
provide. In particular the ones we\'ve seen today. Because we just went
through the RFP process and are doing the two pilots, we saw I can\'t
say but many proposals of success. Much of that is existing HL7
Workgroup which I participate in on setting the standards is looking at
exactly those kinds of things in terms of what they do. And you made a
point and I just forgot.

\>\> We were talking about gaps, let\'s shift at looking at the
questions we asked and see if those, how close we feel like we\'re
getting. Because we do have to adjourn. I guess the question for us to
think about on the questions we ask them maybe the first five how close
did we get to the information we needed and whether this points out
other things. So what\'s needed to increase consumer awareness and
engagement? We\'ve already said we think we need to talk to other
audiences to understand that. We maybe need to learn more about
incentives and business case and ROI. What else do we need to understand
to answer that question.

\>\> I thought it was interesting that in the testimony the person that
was trusted the most with PHR or to provide it was the provider, the
doctor. And I can\'t see that happening, but it sounds like that we need
to know more. I think the surveys they cited doctor first, hospital
second and I forgot who was ‑‑

\>\> Pharmacy.

\>\> Do we need to have somebody come talk about trust per se? There are
people like David Short, I mean that\'s his thing. He does that. Do we
need to get somebody like that to talk to us, or do we know what we need
to know about this?

\>\> I think we need more information. But I think I\'ve seen some of
those surveys if you break it down nurses are above doctors. So I do
think we need to get more information on that. But the whole trust how
we formulate that and Lynn I don\'t know if we can help, Linda and I
co-manage the pricing and security stuff. I\'m not sure we can help
think about what that might look like, a conversation. I agree.

\>\> We also heard that when you showed value and information kind of
changed the dynamic of the trust. What needs to be focused on what we
heard about today is not only how you educate consumers to the value but
how do you really show to them and I think it goes to some of Rob\'s
points the difference it can make that it can improve and help empower
manage their logic and help their provider. Because until you get them
to adopt the information, you\'re not going to advance the technology.

\>\> Another thing, if I look at those lists about who is most trusted,
one that wasn\'t asked about was the consumer. Like if you got this from
yourself. If it was not provided to you, it was just something that the
open-source community, the no ownership of this, there\'s no agenda
behind it. It\'s just something that\'s available, in Wikipedia, we
heard reference today, no one owns Wikipedia in the normal sense.

\>\> Right. And it\'s certainly, as we see things, many thinks
developing through the open-source community. There\'s another business
model that\'s called the anti‑business model.

\>\> Absolutely.

\>\> We haven\'t heard from that community as, and I\'m not saying
that\'s an exclusion of a commercial opportunity especially in the short
to midterm, there\'s going to be a lot of sponsors of things. But I
would imagine that if we were talking about this 10 years from now, we
wouldn\'t be having the conversation about who is providing this for
consumers.

\>\> There are certainly internal biases being involved in the health
care community. There are trusted sources, sometimes it\'s the doctor.
He trusts to give him good information, the Cancer Society. But then
there\'s a lot of, we also know there\'s a lot of junk key information
out there, that\'s incorrect and dangerous.

\>\> But the verification, you should have the choice to go in and make
choices and if you have appropriate access to your physicians\' or
hospital\'s reports then you should be able to access them in the same
way without being required to go through them that have the filters on
it that you don\'t need.

\>\> I think we need to be mindful that we are now establishing this
Confidentiality and Security Workgroup that\'s supposed to take on our
issues relative to that. I think at a high level, if we\'re concerned
about the source of our data or the people we\'re exchanging data with.
It\'s still productive, we have to have those. E-authentication is
probably one issue they\'ll take up in other meetings, starting in the
next month. So we\'ll really have to stay connected with them, and I
think at least one or two of us will try to serve is liaisons.

\>\> A little bit of twist on it.

\>\> It\'s an important piece to what we ‑‑

\>\> It\'s a slightly a different on the confidentiality piece, it\'s
kind of who it relates to.

\>\> Our role is an assurance factor here that I agree, I think this
largely belongs to a different group but we need to be able to assure
it. It\'s a different function of it. The other piece there\'s confusion
about entities that are not trusted sources and somehow it\'s working
with the health plans and employers. It is the assurance that they\'re
getting when they partner with trusted sources. That works very well
whether it\'s the patient organization for if associations the doctors,
the nurses. So a lot of ways around it. So there\'s a question of how do
we insure the trust factor and how do we also deal with the technology
piece, which does kind of go someplace else.

\>\> I think one comment that struck me today was someone was talking
about having a consumer group meeting until they put the power flights
on the board no one was getting it. I think the trust will fall away as
education takes place. I think we need to focus on education rather than
trust issue. I think it\'s a direct pairing.

\>\> To follow up, Marc and I were talking offline. The professor from
the University of Maryland, one of her key information is when the
information is presented in a balanced way, the people understand the
trade offs and it\'s really getting that messaging right, having testing
that messaging and really knowing what they it is and rolling it out in
a large campaign can be quite effective.

\>\> In terms of the most valuable features and functions of a PHR, we
heard a lot. We\'ve heard a lot about that. Seems to me we have pretty
good information on that, don\'t you think? People mention it over and
over. It\'s in the testimony. One can argue what additional
functionalities, but seems like we have a lot of data there.

The question is should we be defining that?

\>\> I think we need to work with them, the standards organizations that
are doing that, the content and the functionality go together. And
there\'s work effort on that, partner with them the HL7 Workgroup, the
CCR, the STPM, even AHIP so I think if we want to look at their list and
do a comparison of what they have, I\'m sure they\'re all collaborating,
which is part of our mantra and have this group weigh in.

\>\> If we can put it in and weigh in.

\>\> When we talk about standards that\'s another group, I think the
scope of the standards is going to become important when we talk about
trying to roll this out nationwide, looking at, when we\'re looking at
all the different States of how they have their rules and laws that
apply to how you handle medical data. So I\'m thinking that the scope is
going to be very interesting in acceptance to how portable it is and how
many State lines it can cross easily for the portability of the patient.
What the minimum set should be.

\>\> Who should identify the most important elements. The message seemed
clear it should be the consumer should identify what they want or need
or they won\'t use it. I suppose we could get more paternalistic and say
there\'s a few things they need that they don\'t need. Do we think that?

\>\> Education.

\>\> That\'s part of the educational process.

\>\> The informed consumer I think is the target we really want. And
again that takes a lot of forms and we don\'t want to exclude any user
group in this. So there will be different answers especially in this ‑‑
it will come as we broaden our user.

\>\> Yes.

\>\> How can we make the timeline, make some realistic, when I say
timeline, I don\'t mean by this data by this date. I mean what are
dependencies in our road map for the future. And we can accelerate that
one.

**[\>\> KELLY:]{.underline}**

We have in the next couple of months we are going to be asked to be
involved with identifying and prioritizing potential use cases for the
next year, and it really does relate to what do we think is the next
most important one or two functions because just like the medication
history and registration summary our specific charge we now have to tell
the nationwide health information network consortia Health IT Standards
Panel and the certification commission if we go there and they go there
what should they be focusing on? So it could be, you know, we heard
today labs. We heard some people say results. We heard, but I think
actually even though we do need to get more input from a diverse group
it might be help to synthesize the day we did. We\'re doing that
exactly. But they\'re listings, I think we can compare them side by
side. I think by late October we\'ll have to have a recommendation to
the Secretary and AHIC what we think the next ‑‑

\>\> There was a good bit of data presented today.

\>\> Quick comment on in terms of people with chronic conditions have
looked at what their initial wants and desires are here. The challenge
is because people are not even aware of the problem or the solution,
their wants and desires are at a very low level. And I compared this to
the original Walkman that was just a radio only to now the video iPod.
It\'s going to turn real quick and wants and desires will be there we
need to build that in.

\>\> The airline industry, who would have ever done that online.

\>\> The health related issue ‑‑

\>\> It\'s a segue. I was going to say something about that. If we can
get a little more information. There were two speakers that talked about
populations undocumented populations and bilingual records. I think that
goes back into.

\>\> So health literacy.

\>\> More information on that.

**[\>\> KELLY:]{.underline}**

\>\> I have information on that, too. We have a physician working with
us over the next couple of months. He\'s an RWJ scholar working on this
conceptual framework for e-health literacy. We have some health
literacy, Cynthia Baer, others from HHS. What we might try to do ‑‑

\>\> (Inaudible).

\>\> So we\'ll have good community looking at this, maybe we can have
discussion on that.

\>\> Interoperability we had a great deal of conversation on and there
are groups working on that. So do we, maybe we don\'t, I don\'t know if
we need more information. Is there a sense that we need to know more
about that? We know that some people think it\'s harder than others but
it\'s going to have to have to happen.

\>\> We took the path on the people that\'s working on it. People don\'t
feel it\'s enough to be interoperable between one EHR and one PHR,
you\'ve got to be able to talk to multiple.

\>\> Absolutely.

\>\> It just seemed like there\'s some deadlines in September where
reports back would be useful. Not only from HITSP what they come out but
also with the tests BCBSA lessons learned and standards work and how the
flow of the information.

\>\> I think one thing that wasn\'t real clear today was what the
association and AHIC have come up by standards and domain versus what
they\'ve come up with. If it\'s not a big deal, hopefully we\'ll learn
something. So it will be better for much broader roll out. But we run
that little bit of risk if there\'s discrepancies because so many people
in the standards community as anyone knows involved with HITSP, have
been working around the clock no an attempt to wrap it up.

\>\> There is discussion but it will be done in a couple of months.

**[\>\> ROSS:]{.underline}**

\>\> One thing we hadn\'t heard a lot about but put our radar screen in
our initial recommendation was research functions I\'ll put my Pfizer
function on for a second. When I stepped out today was because NCHB was
holding a workgroup. Someone was giving testimony and I was helping. You
need to access trials you need to learn from population data, the
secondary uses for patient benefit and for private and public profit
making purposes as well. These are things that we need to address at
some point and put in our milestone somewhere how we\'re going to think
about that and where we\'re going to put it in pour ‑‑

\>\> Yes, it\'s another kind of patient empowerment, absolutely. That\'s
another thought. The issue of certification then as a, so if that\'s an
issue on which we\'re going to weigh in, what do you think we need to
hear more about that? In the sense of the marketplace we\'ve heard about
what people would like and won\'t like, we can hear from people. We have
to make some decisions about what we think would be the appropriate
things to recommend. Do we need more information on that or do we need
to cogitate on the information that we have?

\>\> I think we have a fair amount of information, a number of different
suggestions, I think we need to have a discussion as to how we think
that ought to look like. The one piece I would add is that from consumer
patient perspective they will expect there\'s standards and
certifications out there.

\>\> Yes it\'s sort of a matter of how much and what kind.

\>\> I think we ever to be very careful, though, not to impede the
development progress. It\'s fun to have minimum standards and
certifications but we don\'t want to impede the development.

\>\> But we also don\'t, on the other side, we don\'t want things to
happen that will make people loose trust, because then we\'ll really
impede it for a long time. So it\'s a very tricky balance, I think, so I
think you\'re absolutely right all those issues are important.

\>\> I thought there were summary comments toward the end were helpful
because clearly there was discrepancy but there seems to be more
consensus around interoperability requirements but not for functionality
and features, and it seemed like if maybe what staff can do is try to
start to really flesh out based on the whole entirety of the written
testimony we receive and answer these questions compare it to our
discussion and maybe when we debrief we\'ll have that to go off of so we
can consider the full spectrum of responses.

\>\> The only caveat I would add to that is I know there was a lot of
testimony about stay away from certifying functionality. However, you
don\'t have to certify every functionality for every, but you know we do
want to know when you buy a pair of anti lock brakes they mean
something. Even if ‑‑ I may not actually be in the car. You wouldn\'t
know if it\'s in the car that\'s what you think it is. Having functional
certification saying you\'re offering something this is what it should
mean, i.e., a personal health log of diabetes measures. But that\'s
something that I can know means interoperability. If my doctor says and
I can take your diabetic health record then you should be able to get
that function.

**[\>\> ROSE MARIE:]{.underline}**

All right. Being 5:00. Is it a burning issue?

\>\> Just to answer your question certification. I think we should look
at it like the JCAHO process where you come out with standards, people
reach them. As they reach those goals and then you raise the bar a
little bit. You don\'t go to the end game right out‑of‑the‑box.

**[\>\> ROSE MARIE:]{.underline}**

I\'m very much in favor of ending meetings on time. And talking
afterward. Do I hear opposition? Should we consider this meeting
adjourned?

\>\> Yes.

**[\>\> ROSE MARIE:]{.underline}**

\>\> Thank you very much. Great meeting you all. And great meeting.