American Health Information Community

Consumer Empowerment Workgroup Meeting

September 18, 2006

**Disclaimer**

*The views expressed in written conference materials or publications and
by speakers and moderators at DHHS-sponsored conferences do not
necessarily reflect the official policies of the DHHS; nor does mention
of trade names, commercial practices, or organizations imply endorsement
by the U.S. Government.*

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

Thank you very much for the opportunity to talk to the work group about
personal health record systems and some about the experience we\'ve had
at health and medical foundation and other places in the industry. I
titled this, after the health affairs articles that David Lansky and I
wrote, in terms of trying to connect the dots between the
patient-consumer and the health care team. So the principle we\'re
chasing after \-- and this is going to be a little bit hard for the
people on NASTA, I can see right away.

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

\-- just a little bit so everybody in the audience can hear you also.

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

Okay. This quote comes from the Islands crossing the quality chasm
report, where they talked about a goal, which is that patients should
have unfettered access to their information and the knowledge. The
second piece is really important. If we want to get patients truly
engaged, they not only have to have data flowing at them, they need to
have the wherewithal in order to deal with that data. So one possible
solution then to create this engagement is the topic of this group,
which is the personal health records system.

The question, then, is "what is a PHR.?" And I know this group as well
as many other groups have struggled with that definition because in the
industry it\'s not so clear.

So I\'d like to refer to what Jim Collins calls, in his Good to Grade
book, it\'s the who, then the what. You want to get the who on board the
bus before you even decide what direction that bus is going to go. The
who in this case is really going to be the patients and the consumer. So
I want to talk about what is it that they want, try to avoid things they
don\'t want, and with available experience, what is it, if they\'ve
touched something, what do they love about it. That\'s the only way I
think we can get to the sustaining value, and hence the business model
for moving forward.

So one of the analogies I like to use is that in the airline industry.
And you all recognize that this is a cockpit in an airplane. And things
sort of stand out to you right away, and what are those? Well, one, if
you divide it right down the middle, both of these individuals who are
fully qualified to fly this aircraft have the same information.
Precisely the same information. The other thing you\'ll notice is there
is this little instrument in the middle that\'s called the artificial
horizon. And what that does is translate the thousands of calculations
that are going on for a second, into human speak. So that they can \--
so that the human can intuitively figure out what\'s going on with that
all that information. In a sense, it\'s translating the data into
information that the human can use.

Now, the other question, then, is well, who is in that copilot seat if
we want to go back to health care? And the obvious person who has the
most vested interest is the patient. Now, if we look at this, does the
patient have transparent assess to that all that information? Well, the
answer of course is no. So if we were to paint this as it really exists
for the patient, you would paint it like this. In other words, the
person with the most vested interest has no access to the data or the
knowledge needed in order to maximize their care.

So again, concentrating on the who, then the what, take a look at how we
would define PHR according to the patient\'s perspective. And I want to
paint this formula of \-- figuring out what it is they want, trying to
avoid what it is they fear, and then combining it with what it is they
already know and love, if they\'ve had access to something like this.
And that I think would form the critical success factors.

So what is it that they want? Well, the first goal then is \-- first
technique is really to use focus groups. Invite them in, and figure out
what it is they want. In this focus group which was done in 1998 at
Northwestern, this was a group of patients who had been exposed to
physicians, half of which had been exposed to physicians who had used an
electronic health record system, and the other half not. And the
question that was asked of them is what about the information you
received, what would you like to receive from your physician after a
visit?

In these focus groups oftentimes there\'s a one way mirror, with
participants consent you get to watch the discussion that goes on, which
is highly illuminating. The first \-- there were a number of themes that
came out of this. The first is that patients really do seek information
almost immediately after the physician visits. And it would be hurtful
for the physician to hear what goes on. I mean, rarely does the patient
walk out of the room and say, \"Thanks, doc, but I\'m going to go check
up on the information that you just gave me.\" But if you listen to
these patients talk among themselves, that\'s exactly what they do. They
say thanks, doc, and I\'m going to check up on more information. So they
go hunting a lot of times to other friends or family members and, you
know, you\'ve been told there\'s something wrong with your heart, do you
have anything wrong with your heart, and what do you take? And that\'s
the source of their information.

So as in this news article, this person had a lump in her breast. So
what the first person she goes is what you think of, is she goes to the
doc. The second place she goes is places where she can get more
information. And that\'s just the natural course of events.

Now, it\'s nice that you can get a lot of information on the internet
these days, but patients are a little jaded. That\'s nice, but they
would like more and more to get information specifically about them.
Data about them, and then the connection, the knowledge that would help
them understand that data, and do the next step.

Well, who do they want to be that intermediary, the interpretation, and
the next step person, at least for advice? It turns out they want \--
they\'re seeking their physician to interpret their information and the
next steps. Now again, there\'s a lot of information on the internet,
but if you ask patients where actually do you want \-- what\'s your
preferred source, by a factor of four to one they really do want \--
they want it from their doctor, not just the internet online search.

The next theme is that the timing is everything. The reason that it\'s
so ineffective, the normal \-- the normal dissemination of information
in the exam room is so ineffective, is that it is a one way street, and
it\'s not the time when your questions come up. Either in your \-- with
yourself, or your significant other that poses as the inquisitor when
you get home. So we\'ve got to make this information available 24 hours
a day. In a Harris interactive poll that was released just last week,
you may have seen this, when they asked folks what they would like to
have access to when seeking care from a doctor or hospital, they talked
about reminders when they\'re due a visit or care, making appointments
online, e-mailing directly with their doctor, receiving test results,
accessing their electronic medical record. They want information about
themselves and the connectivity of physicians.

So let\'s start putting together this equation. With the wants, they
want information about them, that\'s very pertinent to them, related to
their interaction or the relationship with their health care team. And
they want that to be available 24 by 7.

The other pieces, they want the data and information to be interpreted
by their health care team, and their physician, and guide them to where
they should be reading. It\'s essentially an annotated bibliography, so
to speak. And they want tools to help them manage their diseases better.

They also want that online continuous connectivity with their health
care team, and to be able to share information, whether it\'s from home
or from other providers, with the person that they\'re sort of
coordinating their care.

Now, what don\'t they want? You know, in a Markle survey, which is
similar to a lot of others asking this question, 91 percent were very
concerned about their privacy and security. Which is very natural.
What\'s interesting is who do they trust? Well, you might imagine that
most of them trust their primary care physician. That makes sense,
because that\'s who they went to in the first place to ask for advice.
Well, who don\'t they \-- would they rather not have access to the
record? Well, turns out it\'s the health insurance company. Not because
they\'re mean or bad, but because they\'re afraid they may not be able
to get insurance if that information was shared.

Who is next in line of not really wanting to \-- patients not wanting to
share the information with? Well, it turns out the family members. And
again, it\'s not that they\'re mean, but this is an expression that
patients have that they want their information to be private, and
something between them and who they\'ve delegated, you know, some
professional advice to come from, their primary doctor.

So another thing that the Markle Group did was had six focus groups
throughout the country. And the theme there, they said is they trust
their doctor to host, manage and access their PHR. And what they don\'t
want is to have it maintained by, and they listed insurance, employer
and government. Again, not because they\'re bad people, but because they
would rather keep the information private, and they\'re worried about
consequences in those groups.

So if we extend our equation, then, they want to have it hosted by the
folks they already trust with their health information, and their fear
is that a loss of privacy and insecure handling of their management of
their data. So they would explicitly not want it to be shared, except
with their consent, by their employer or their insurance company.

The third component of this sort of formulation is really the user
experience. So I think this PHR concept is really more of a "try it
you\'ll like it" thing, in terms of really understanding what would
create sustaining value. So it\'s most illuminating to find people who
have already used it, and figure out why they like it, if they in fact
do.

So that\'s where I\'m going to take you through a scenario of using PMF
online, which is the PHR that Palo Alto Medical Foundation uses, and
I\'d just like to illustrate some of the functions. And you\'ve seen
many of these, but I want to highlight the ones that are transformative.
So they\'ll naturally sign on with an ID and password, and have a number
of things that they can do.

In this scenario I\'m going to have the patient have back pain and want
to schedule an appointment. So they ask for an appointment, give a
little bit of history of why they want to come in. And under an open
access situation you can basically come in the same day and see your
doc. So this person is going to basically rush in, see her doc, hands
on, come back. And the reason she\'s anxious to get back is because once
she\'s been in an encounter with someone using an EHR, the information
that they\'ve talked about, and recorded, is instantly available. The
minute they leave the office.

So they can see their recent visit today, if they click on that details
button they will see a summary of their visit. Now, here I\'ve
illustrated some of the instructions that might be given to someone with
low back pain. Now, one of the nice things is if it\'s available \--
now, we actually print out a summary for them. But on the internet then,
of course, they can click on these links, and go to another site that we
may have endorsed.

Now, the thing about back pain, it\'s not an infection that you treat
with an antibiotic and get cured, it\'s something you have to prevent,
not essentially get cured of.

And yet, it\'s not easy to explain. You have to say do these back
stretches and back exercises, and unfortunately, in the exam room, the
patient is too embarrassed to ask, well, what are those, and the doc is
too embarrassed to say I don\'t know. So the transaction is very
unfulfilling, and consequently, you get recurrent back pain.

And the other trick is you can\'t start doing these things until you\'re
over the initial episode. So it\'s really set up so that people are not
going to end up with the benefit of strategies to prevent the next
incident. Yet, when the time comes, and you do need to know, if it\'s
always there and you can click on it, and there\'s something very
simple, very illustrative, that maybe can get to you do the things that
will prevent the next episode. And as you all know, it\'s one of the
biggest costs, in morbidity, in American life.

So she might have that moment, that teachable moment of that opportunity
of she\'s considering whether to stop smoking or to do these back
exercises. And they have a question, and if you do not answer that
question at that point, that\'s when they do not convert and do whatever
it is. Stop smoking or do these back exercises. So she may ask at the
moment, and she can ask at any time, and what will happen is that will
come into the physician\'s in box. But here\'s the important piece, it
is integrated into the work flow. So the same place where the physician
gets their lab test results, messages from their nurse, they will get
messages from their patient. In other words, integrated in the work
flow. That\'s crucial, and we\'ll come back to that.

So when the physician gets this message, of course, at the touch of a
button, they\'re already in the medical record, then they can reply to
that patient right there. And then once you send this message away, what
will happen is the secure web server will generate a very bland
notification e-mail saying you\'ve got something there. So it can come
out on this electronic postcard and the whole world can say you have
something there, but it doesn\'t reveal anything about you.

So then the patient then clicks on that, comes back, logs in with their
ID and password, and gets the new message from their physician.

What\'s nice is the whole context is there. The patient can view
everything else in the medical record, and this whole transaction, this
communication, has been stored in the record so that other people, other
care providers can get at it.

Other things in this PHR is access to essentially their view of the
medical record the physician is using. So it\'s a shared record. So all
we\'ve done here is it\'s the same thing as we call a problem list, but
we\'ve relabeled it the health issues, and we\'ve retitled this to make
it more understandable to the patient.

The other piece is even though this is integrated with the EHR system
that the provider uses, there is a special place that patients can
record their own notes privately. So in other words, they can say
anything they want here, and it is not shared, there\'s a disclaimer
that this is not shared with the provider. We\'re trying to get a hybrid
of the best of both worlds, you know, we have the piece that they\'re
viewing, our integrated record, and they also have a place where they
can keep their own notes.

Now, interestingly enough, less than 1 percent of our \-- and we have
close to 70,000 patients using this \-- less than 1 percent take
advantage of this. So that again raises questions. So how much is it \--
how much of the value is what I enter in and want to keep private.

So other things is they have access to the medication list in our
record, the allergies, immunization and the health reminders, and all of
that is tailored to them. So again, you can go to the internet and find
out what somebody recommends in terms of how frequently should you get a
mammogram or pap smear, but that\'s all modified by your personal risk
factor. Again, that\'s the difference between generic information and
what applies to you.

So here, because the physician has added your risk factors, you\'re
seeing your due date. Not some generic due date. And when you click on
the hyperlink, you\'ll read more about the reasons why you want a
pneumococcal vaccine.

The most popular feature is the lab test results. Even though California
law, which is where I practice, says we must get the results back to
them in a timely way, the fact they love this so much must mean that it
doesn\'t happen 100 percent of the time. They love this, they will
probably within the same day get access to this. So it\'s the numbers,
and the normal range. But what I think they like more is the note from
the physician interpreting that. Remember, go back to the survey. They
want this interpretation of what does this mean to them.

Now, this physician might think, well, I\'ve done a great job, I\'m
explaining exactly what this is, but unfortunately, you put Greek in
there. I mean, not everybody knows and remembers what an LDL is. And
even though we provided physicians with the library of links saying
here\'s a bunch of helpful links you can sent to your patients, it stays
on the bookshelf.

So what we did is we created a technology that goes and looks for those
commonly used phrases, and then we wrote \-- so if they click on this,
they\'ll get a definition we\'ve wrote in plain speak, and linked to
things that we\'ve hand-chosen as endorsed. If you go back to the
survey, what do they want. I want my information, and knowledge,
information resources that apply to me. That my doctor thinks.

So this may come from a number of sources, this particular one was
written by us, it can come from dot gov sites, it can come from other
endorsed sites.

Here\'s the transformative piece, though. So LDL plus, now we\'ve
explained this is the bad cholesterol and what\'s the number we\'re
shooting for, so if they plot this, then \-- now, this is not rocket
science \-- they get this graph.

But this graph has been extraordinarily transformative. Because it shows
you where do we want you to be, and what is happening to you. And only
you know what\'s the difference between here, and here. Could be a
number of things. One is that, for once, you took your medicine. Two, it
could be you changed your diet or your exercise. But only you know. And
the thing is, this is a positive reinforcement. Not the number, but the
trend, or the change. So we started this in 2002, and we have almost
70,000 people signed up, and as you can see, it doesn\'t look like it\'s
headed to any plateau anytime soon. That represents over a third of our
active patient population right now.

One of the graphs I like is this. And this is for patients in their 50s,
37 percent have signed up. What I like is in their 60s, 37 percent
signed up. In their 70s, more than a quarter have signed up. And more
than 10 percent of our people over 90 years old are signed up. And our
oldest living is 104. So the age barrier is something that is being
broken. And in fact, one of the people who uses it the most does not own
a computer, and she uses it at a library.

So one of the groups that you worry about, people with these health
issues, are getting access to it. We want it better and more, but we\'ll
get there.

The other piece is the people who have signed up, compared to our
general population, have about twice \-- are about twice as sick. They
have about twice the number of diagnoses, twice the medications, and see
us twice as much.

So unlike sometimes you look at health websites and you say it\'s for
the worried well. This tool, it\'s only a tool for what I think is a
relationship, is being used by people who have the need, the clinical
need.

People are very happy with this. On average, about 93 percent are
satisfied or very satisfied. And what do they like? This is the rank
order of what they like.

They like, as I said, to view their test results, what tests are coming
up, messaging with their physician, looking at the record. So they want
to get information \-- access to their health information, and the folks
that they trust to help guide them through that. Then they want some of
these convenience functions like renewing their medications and health
information, and then billing is down there.

So that\'s what they like. People who use such a system, that\'s what
they like about it.

Now, what about the docs? Well, fortunately \-- and this is the only way
it will work with the previous slide, is the docs like it, too. If it
didn\'t work that way, we wouldn\'t have the satisfaction, I think, on
the patient side.

So let\'s look at another stakeholder, one who is one of the indirect
payers of health care, that\'s the employer. We did a pilot with Cisco,
one of the big companies in the Silicon Valley with 500 employees, we
worked with Jeff Rideout and Sharon Gibson at IGS Cisco.

What happened is the employer sponsored online physician messaging for
this group of 500. And they wanted to find out how does it impact their
productivity, their utilization, and their patient or employee
satisfaction.

So by survey \-- and of course they wanted the ROI. So by survey, the
employees said that \-- 87 percent of them said they spent less time
away from work, and that\'s music to the employer\'s ears. Utilization,
72 percent of the patient employees said they saved one or more office
visits. And 61 percent of them said, you know, in terms of relating to
my doc, I\'d just as soon the online communication be the way. And if I
have to, I\'ll call or I\'ll come in. But I want this to be the way.
Just like everybody else, every place else in my life.

From an ROI point of view, what Cisco did is calculated the cost of the
program, and the amount saved by employee perception, and the amount
saved in terms of productivity, time away from work, and so they got an
ROI, from their calculations, of 4.5 to 1.

So that\'s a good indication that an employer has an incentive and
recognizes value in this additional tool to \-- that\'s being offered to
connect patients, employees, with their docs.

Now, here\'s the part I really think is informative. We do an annual
survey, and in that survey we allow people to write in \-- and we get
10,000 comments, and we had so many that we \-- I heard somebody sort of
categorize them, and here\'s some of the things that they say.

One is I\'ve never before experienced such interactiveness between the
patient and medical facility. Another said they feel connected, they
feel like they have a partner in health, and someone is there to help me
and cares.

So that\'s talking about a different relationship than, you know, I have
to go through the hassle to make appointments, show up, take time away
from work, do my kids, and go to this office. Where I get five minutes.

And another patient summarizes it in a way that I think is very relevant
to this committee, is, \"This empowers the patient with knowledge and
creates a true partnership.\" And I think the word knowledge is one of
the biggest pieces here, is it\'s not just data flowing or it\'s not
just some generic information, it\'s really knowledge that it pertains
to me.

Now, we talk a lot about self-management, but self management requires a
number of steps: Motivation, activation, self-efficacy. And here\'s some
of what they say that pertains I think to self-efficacy. So the test
chart, just that simple graph I showed the patient said is an eye
opener, causing them to pay more attention to their health.

Another patient talked about how lab results over time gave him or her
insight over what I needed to do. A third person said results caused me
to reflect on what they\'re saying to me.

Naturally all these folks have had these conditions probably for quite
some time, they\'ve had results spoken at them, but they haven\'t had
the tool to have it interpreted or have an impact on them, that a simple
graph or connection between my information, shown in a way \-- that
artificial horizon, connected to more information on what I should do
this information, that\'s the connecting the dots piece.

Again, patients are so insightful, this person put it together.
\"Knowledge is power. It\'s the understanding of my health issues that
kept me on the right course.\" And this person was talking about diet
and exercise. Something that is really, really hard for us to effect.

Another example that I didn\'t show here talked about somebody going on
a low fat diet and losing 20 pounds for a year. Which we don\'t do with
pills and we really rarely do with our words.

This one talks about feeling more confident, another one says being more
accountable. And here\'s an interesting side effect. \"I lost weight to
get the overweight designation off my record.\" (Laughter)

So you see, we actually have the program that automatically will
calculate your BMI, and put that on your problem list, if it\'s over 25.
So they will see that.

And we talk about something \-- so when alerts come at you like health
maintenance procedures overdue, it\'s in red, for the provider. And so
we talk about something called get the red out. So these conscientious,
compulsive providers out there, to try to get the red out of this chart.

Well, patients do the same thing. They respond if we give them the tools
to do that.

Now, let\'s do a reality check. Again, business models are based on
sustained value, not just sort of cutesy or fads. So if you look at what
you might get from a focus group, talking about something in the future,
this is how \-- they might say, you know, I love climbing trees, and
I\'d like to have something that, you know, can move around, and they
might describe something sort of like this or this is what you might
hear.

Another technique is visioning, what a consultant might help us do. And
you might come up with something that\'s got bells and whistles but
actually did not hit the nail on the head in terms of what causes value.

Third technique is functional requirements. I want to be in a tree,
it\'s got to hang from a tree, it\'s got to swing. But what\'s missing
from this? Work flow. When you try to get this to work, it doesn\'t
work. And you find that out right away, but only with first use.

If you do not support it, and this \-- in our \-- translating this to
our world, if it doesn\'t come with data that\'s not only first getting
in there, but maintained, we sort of have \-- we don\'t \-- have it.
We\'re missing a big piece of this context.

And finally, what does the consumer really want, that produces
sustaining value?

This is what is fun over and over again.

Now, I can understand how it was hard to communicate this sort of dream,
or experience, here, when you didn\'t actually know what it would look
like. But that\'s the \-- that\'s \-- this is the issue we have to deal
with, in terms of how do you actually get this, which would be \--
produce sustaining value, and create the business model?

So in our world, then, we\'ve got to choose the right, in quotes, use
model.

Are we looking for what consumers think they would like? Sort of a focus
group technique or questionnaire. Are we looking for fill in the blank,
what stakeholder X wants the computer \-- the consumer to like? Or are
we looking for \-- in the best of all worlds, you\'d almost have
somebody go into this time machine, play with something, and figure out
what is it that they play with, that they really would play with over
and over again, and use. That\'s probably what we\'d like to do, if we
had the chance.

So looking from our experience, then, what would be the critical
attributes, again, with our experience with this particular type, it\'s
one type of PHR. Say they want comprehensive patient information,
that\'s consistent with the survey results as well.

I want to know all about me, no matter where that information exists

Now, in today\'s world there are some people who have that. They may go
to a large integrated delivery system, like the VA for example. Or I
mean our system is even integrated, because we\'re a multi-specialty
group practice. But in any case, if you can go to a place where it\'s by
nature all in one place, that\'s how they\'re getting it today.

In the future, and the ideal is that it shouldn\'t matter where you go,
it\'s all interoperable. And importantly, it\'s all integrated with the
EHR, the tool that your health care team has. Uses.

The other piece is that connectivity. I think what we learned is they
don\'t just want information, which might be really attractive at first,
it\'s like just give them \-- access all information. They want to know
what applies to them, and they want to know what their health care team
thinks applies to them.

Then to use it, there has to be two dimensions of trust. One is the
privacy trust, that it\'s going to go only to the places I want.
Including my family members, if I choose not to have that.

But the others, I want it to be shared with folks who can add to its \--
the value of the information, and add to what I do. Be my coach, and be
my encourager.

And so that means we have to bring these folks into the loop. The
physician adoption. And to have them use it, it has to be an efficient
work flow. Go back to the swing. It doesn\'t work if, say, okay, in
addition to all the things you\'re doing, I want you \-- vis-a-vis the
AHIC meeting, I want you to do quality reports. Oh, on top of that I
want you to go to the other website to answer your patient messages. It
just doesn\'t work that way. And the other piece is if this is a
professional activity, and we think it is, then it has to be reimbursed
like the other professional activities.

So going back to the who, then what. The who, the major groups, are
physicians and patients. Now, that\'s not ordered by importance, because
patients are first. But unfortunately, there\'s some kind of sequence
that\'s required to set up this value proposition.

For the physicians, it means getting them to adopt the EHR. And also,
compensating them for the professional service rendered online.

For patients, unfortunately, it does mean having physicians, at least
for this proposal, this proposition, is to have folks who will also
contribute to the data that\'s in the PHR, and be online with them
through their PHR.

And the other piece is really unfortunately, as I said, it\'s more of a
try it you\'ll like it kind of a tool, and that means we have to
communicate what\'s the value, without them actually swinging in that
tire swing. That\'s a tough thing to do.

So the what, if these are the who, the what, HHS is working
extraordinarily diligently on these pieces of the equation that would
help EHR adoption. The incentives, the standardizations, the
certification. Those things are coming into line very nicely.

The other piece, and there\'s another work group for this, is to make
sure they avoid the fears that they have. Both on the patient side and
physician side. And we\'ve got to have uniform privacy protection.

The third piece is we need from trusted sources a way to reach the
patients, and give them the ability to understand, without experiencing
it yet, what\'s in store for them, and why you would want to advocate
for them on behalf of yourself. So public service announcements is one
way, professional societies, consumer associations. What are the
organizations and communities that patients and consumers trust. Have
them deliver this message.

AMIA, the American Medical Informatics Association, had a campaign to
try to use that \-- to do that DTC kind of stuff. And we were funded by
AHRQ, involved AMIA, AHRQ, ONC, and CMS, and had two workshops. The
first had to do with social marketing, and Bill Smith I see is on the
agenda for later today. The idea there is we really need some
professional help in how to communicate to the patients in ways they can
relate to.

Now, they\'ve talked about experience of care, and that\'s ideally what
you\'re trying to communicate, through words and visual and
advertisement. And the other metaphor was a petting zoo, and that goes
with the try it you\'ll like it kind of thing. And they ask us to say
well, does this \-- pose to ourself, does this problem or solution
impact a large population. We think so. And is it actionable. And one of
the dilemmas we had, is the "is it actionable?" question. One of the
examples actually Cathy Crosby brought up with the Ad Council is well,
you know, they tried to boost the amount of use of booster seats in
cars. When you\'re wildly successful, though, in that case the demand
outstripped the supply. So that\'s one of the get people riled up, and
then disappoint them. That\'s what we don\'t want to do.

So we said EHRs aren\'t quite that far along, so we had that dilemma.

The second workshop we tried to develop a strategy, and we focused
around the three Ps, the public, providers, and policymakers. For the
public, we really needed to reach them, and educate them and provide \--
raise their awareness about the vision. And you can\'t tackle everybody
the same way. And a group that does meet the need, you know, large
population affected, and as you saw those are large people \-- large
percentage of the folks that are in that group. Medicare population,
would be a good target audience, and reachable by the federal
government.

The providers, we\'ve really just got to get them online with EHRs so
that they have information, quality information that they can share with
patients. And promote the value of the PHR. Now, I will say once you\'ve
got them on an EHR, the PHR is fairly simple, straightforward compared
to EHR from a provider point of view.

Policymakers need to understand what the barriers are facing both the
consumer patients and the providers, and design policy levers that
address those.

So in summary, this is a tool, but it\'s not the end point. So if we
focus more on the who, and what the who loves, I think we will get \--
we will address the right functionality that will take them from health
care in the office, to a relationship that maintains their health,
enhances their health.

A number of critical success factors. One is getting the
patient-consumers involved and educated, and advocating for this. Two is
getting the docs on to EHRs. Three is having the whole system
integrated, because that work flow issue, and the shared information, is
what we\'re after.

And it\'s really about the connectivity with the physicians, the
patients, the health care team, and the caregivers who is going to be
really an important force in the not too distant future. It\'s really
about the relationship, not a product, not software, not a technology.
And all along the way, we have to \-- we absolutely have to keep privacy
on top of our list.

That\'s sort of the morning\'s sort of stimulus here, and I appreciate
any questions, and thanks for your attention.

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

Thank you very much, that was a wonderful review, not only of obviously
a very successful product, but one that you\'ve thought about, and have
thought about the principles behind.

You know, I realized we haven\'t gone around and had introductions
today, and we have some new people. So maybe just a quick round of
introductions, then we\'ll have questions for Dr. Tang. Shall we start
at your end of the table?

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

Theresa Hancock filling in for Dr. Rob Kolodner from the VA.

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

Yvette Murray, DOD representative.

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

Cat Mayhan filling in for Kevin Hutchinson from SureScripts.

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

Ross Martin from Pfizer.

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

Lorraine Doo with CMS.

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

Jason Bonander with Centers for Disease Control and Prevention.

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

Kelly Cronin, ONC. Kelly Cronin with ONC.

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

Rose Marie Robertson, cochair.

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

Gail McGrath filling in for Nancy Davenport at the National Patient
Advocate Foundation.

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

Liza Moody for Steve Shihadeh, Microsoft.

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

Justine Hendelman filling in for Scott Serota, with Blue Cross Blue
Shield Association.

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

Charlie Safran, Harvard Medical School and the American Medical
Informatics Association.

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

Christina Collins silting in for Nancy Nielson with the AMA.

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

Marc Boutin, National Health Council.

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

Sue McAndrew, Office for Civil Rights.

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

Paul Tang, Palo Alto Medical Foundation.

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

Okay, questions for Dr. Tang.

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

Rose Marie, I\'m sorry, you also have Robert Tennant from the Medical
Group Management Association joining you over the phone.

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

Great, terrific, thanks. Welcome being there by phone, we can sort of
guess where you are. Okay, Charlie?

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

Great presentation. I was intrigued by two graphs that you put forward.
One is that although you might say that 10 percent of people over the
age of 80 are using your personal health record is a wonderful
achievement, and 27 percent of people over the age of 70 or 80, it still
leaves 80 percent of the people who may never be on for a variety of
factors.

And at the same time, you had a graph showing that 31 percent of \--
only 31 percent of family members trusted, other family members, if I
understood that graph correctly. But when I look at the copilot seat for
many elder patients, I would have said that the daughters of those
patients are in the pilot seat, or for younger children the mothers, are
in \-- and I just sort of wonder if there was an experience there, in
sort of families sharing, and whether you had any experience with
informal caregivers wanting to access records for Elder parents?

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

Good question. So your first question is so far you only have a third of
your group up, and what about the other two-thirds. The slope of that
enrollment curve is straight, or slightly increasing. So I don\'t think
we\'re done yet.

I don\'t know what the ultimate percentage is going to be. If you
pretend \-- and I have no data to support this, if there\'s a group a
third a third a third, a third that can really understand this and sign
up early, a third that will never actually want to be that close to
their data, and a third that you need to convince, maybe we\'ve gone
through the first third and we want to get through the second third at
least. And then maybe sort of the momentum will carry us into that final
third.

The second is on the copilot seat, remember I talked about privacy as
one of the top considerations in everything you do. So we insist that
the only people who \-- there are a couple of approaches to that. One is
to say share your password with anybody who you want to. That won\'t
leave us with a viable or accurate audit trail. So we do have an audit
trail of who\'s been in. So we insist that only you use your ID and
password.

So what we\'ve had to do is create a proxy mechanism so that other
people who you agree \-- you know, sign up and authorize to be your
proxy, can sign up as well. But they will have their own ID and
password. So we do now have a proxy that can apply to children of older
parents, like you say, or for younger kids. Now, there\'s a funny piece
we can talk about if you want, because adolescence is this no man\'s
land because of state laws contradicting \-- you know, conflicting state
laws.

But you have to think also that this ROI, release of information, is
sort of special in this case. If you think of the paper world, you can
say I\'m going to let Sue have a copy of my medical record. I sign that
away, they give Sue a copy, and I know exactly what\'s in it and I know
exactly what Sue has. In the electronic PHR, it\'s saying from now until
whenever. So whatever is going to happen in the future, that person also
has access to. Which is a different concept to getting a copy, a one
time slice in time copy of your paper record.

So we wanted to make sure we understood what the implications are, and
how to communicate that implication to a patient, who might say I want
to share this with somebody or other. Remember, the family thing? So we
worked carefully on that, but we do now offer proxies for kids of older
parents and for children under 12.

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

I have a quick question, because it applies to an upcoming hearing that
the confidentiality privacy and security work group are planning on
identity proofing, and user authentication.

With the caregiver or the proxies, do you have an authorization form for
them, and do you have then different levels of access? So you\'re
starting off with perhaps viewing a copy, and then you\'d have different
levels of access and time frames for that access?

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

No, right now \-- you know, you can get as complicated as you want and
can support through both administration and your technology. But right
now, it is basically getting access to everything. And you will submit
messages on behalf of that proxy, the patient. Again, that\'s why we had
to think this through, and so we made it clear in our user agreement
that the patient or the guardian has to sign, that says you understand
you\'re having access to the information and are acting and may act on
your behalf. So it\'s a different role. But that\'s what we \-- you
know, that\'s the user form that proxies have to sign.

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

Right, but there is that explicit authorization form, and they\'re fully
aware of the \--

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

Right, and the patient sees who is \-- has proxy access, and at any time
can sign up and click them off. So let\'s say I\'m \-- I\'ve got
something that is sensitive. Now, the trouble is the person is going to
know I\'ve been clicked off, and it\'s one of those things.

But we do give the patient the right to instantly cut off proxies at any
time.

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

Proxies are only for parents of children, children of parents, not
for spouses \--

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

No, a competent adult can give away a proxy access to anyone. The child
can only be a parent.

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

Gail?

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

Paul, I\'d like to ask you about the doctor, because I think we all know
unless the doctors really buy into this then we\'re not going to have
the PHRs. But in looking at how the doctor then relates to the patient,
if the patient goes in and has a visit and then the patient is
communicating with the doctor via e-mail, then does that mean that the
information that comes back will be more general in nature as opposed to
personalized? Because your example of the back pain, is the doctor going
to link you through to these exercises or \-- but those could be for
anybody.

So are we going to lose some of that really personalized medicine by
seeing the doctor, by getting more general information?

And the other question I have is if the doctor is communicating by
e-mail, is the doctor going to put his cost into that? Will the third
party pay for those e-mails? I mean, how is all of that working?

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

Two good questions. One is the back pain example, that was included on
what we call an after-visit summary. So the doctor selected that link
for this patient. So there was a matching this link for this patient.

In where I showed you the explanation about low cholesterol diet or LDL,
that is put in automatically. Because the explanation of LDL and low
cholesterol diet would apply to anyone. So we try to say what needs
further explanation, just to understand what is LDL, cholesterol, versus
what is information specifically for you. Presumably all the electronic
communication between the doctor, the health care team and the patient
is specific. So again, there are libraries of things that they have
available to them.

The other question is one of these policy levers I think we have at our
disposal. Currently, there\'s very few examples of where online
transactions or E visits are reimbursed, and yet that \-- at least the
patient employees, in that one survey I showed you, feel it not only
gives you gives you better care, but it saves you visits and saves you
more expensive high overhead visits in the office. Yet, the professional
is not being reimbursed.

So clearly a policy lever is how do we, in a careful way, reimburse
physician interactions that meet certain criteria. And we have to figure
out what criteria is, but we\'ve got to come up with a way that
recognizes that actually care and advice, professional services, can be
rendered online like it might be on the phone or even in the office.

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

To what extent do physicians \-- so you can \-- physicians can bill for
on-the-phone consultation, but is that \-- I mean, is that covered, and
to what extent is even that covered? I mean, it\'s been quite different
from say the legal profession.

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

Correct.

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

Where people pay careful attention and count those conversations. In
general, physicians, you know, talk on the phone, either a lot or a
little, but have not been reimbursed for that. And as physicians have
moved to doing that online, you know, of course that\'s been added to
that.

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

So in general, you cannot bill or get reimbursed for phone
consultations. It\'s in a sense bundled into the office visit. And
it\'s \-- you know, tethered to an old way of interpreting things.

We actually do have a system internally, so we don\'t send bills out to
payers, but internally we credit physicians for certain visits that
fulfill E and M criteria that are like for a visit, except missing the
physical exam, and would avoid a visit. So we have some internal
criteria that we use. I\'m actually presenting a paper on this in a
couple of months, on how to reimburse using criteria so that you have
reimbursed for qualified electronic visits.

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

I\'d just like to also point out that in the last eight months or so,
there\'s been a lot of discussion about this very issue within the
chronic care work group, and part of their recommendations that were
presented in May were recognizing that we need to be not only
summarizing the evidence that does exist on the value of secure
messaging or online consultation, but that we actually need to be
continuing to develop the evidence base and figuring out specifically
what measures could be incorporated into payment methodologies, that
would allow for recognizing these kinds of communications and these
kinds of consultations to be part of the overall reimbursement system.

But that has to be, you know, an evidence based policy decision. So I
think that there is some work ongoing internally in CMS and in ONC, and
I think AHRQ is also partnering with folks to start not only trying to
synthesize the evidence base, but then figuring out how we\'re going to
be designing pilot or demonstration programs or what we\'ve been loosely
calling the break-throughs to really build on the evidence base that
does exist.

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

Any questions? Yes.

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

Paul, can you talk a little more about the employer (indiscernible)
survey, particularly in terms of you have \-- your other proposition is
really based on the physician adoption, and being able to integrate
what\'s happening on the physician side into the regular work flow? How
did \-- how were these employees then chosen or linked with physicians
who had the capability of doing it from their end?

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

That\'s a good question. So these \-- so the participants who \-- the
volunteers who signed up for that pilot were those who were already
patients of ours. And so that was self-selected, just so we could
figure out \-- contribute to the evidence base of what does it do for
the participants.

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

So that was supported as a separate activity, whereas the remainder of
this is supported from within?

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

I\'m not sure I understand the question.

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

So you had support from the employer for that particular initiative. The
remainder of the PHR is supported in what way?

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

The remainder is largely supported by the clinic. Palo Alto Medical
Foundation. So everything that I showed you was free except for
messaging with the docs, for which if you want to enroll in that that\'s
a \$60 subscription fee per year for, you know, however many messages
you want. So that is one of the ways of offloading that professional
component side. The free part of it is just underwritten by the clinic.

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

Could I just ask everyone to state their name before they talk, because
members of the public like to know who is speaking, and I think we have
some people on the line who would want to know. Thanks.

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

You are \--

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

I am Kelly Cronin. (Laughter.)

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

Marc Boutin with the National Health Council. One quick comment and a
question. Comment is I think there was almost a gasp when you put up the
slide on the families not being a trusted source. And I want to draw a
distinction between families, and family caregivers. Because people do
have a strong connection to their caregiver, and wanting access to that.
We all define our families in a very personal way. We often don\'t want
our entire family to have our medical information. So there is a
distinction between those two.

My question is, how did you promote adoption among the participants for
electronic personal health records, looking particularly at the
patients, in particular for this one third you captured which are
probably the early adopters, and what do you plan to do for that next
part?

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

That\'s a good question. As we first came up what we did was we sort of
put it in our newsletter. And it\'s not just 100 percent came running.
And that illustrates the need for this PSA. In other words, we have \--
what is it, anyway, that you\'re asking (indiscernible) for. It turns
out over half of our enrollees now, compared to the early experience,
come \-- they sign up in the doctor\'s office.

And a common way is if I\'m ordering a lab test on someone, and I\'ll
look, because we have a field, are they online. If not, I\'ll say would
you like to have these results to you online. Then they just sort of yes
or no, and they can ask questions. And we can sign them up on the spot.
That also helps with the authentication issue, because I\'m
authenticating you right now.

So that is \-- so it\'s really need-stimulated enrollment. That\'s the
most effective. It\'s the try it, you\'ll like it thing. Now that I have
a need for it. Whether it\'s renewal \-- you know, renewing a
prescription. But the biggest thing is we\'re having an interaction,
you\'re going to produce information I\'m interested in. Of course I\'d
like to get it in a convenient persistent way. So that\'s probably the
best way now. Most productive.

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

Do you have specific plans to try and capture people who are employed
that will be different in terms of outreach or \--

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

That\'s a good question, too. We\'re doing the same thing, but we\'re
going to try to rely more \-- not rely more on \-- we\'re trying to make
available testimonials. In other words, it\'s \-- it goes back to the
try it you\'ll like it. You have to relate to somebody else\'s
experience instead of just saying, well, wouldn\'t it be nice to have
your data electronically. Well, yeah, maybe, maybe not. But relating to
what your experience is, is what we need to use to communicate to the
future. The next third, let\'s say.

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

Ross?

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

First, Paul, you\'ve articulated very well a lot of the conversations I
think we\'ve been having over the last few months, and a great \-- a
great overall illustration of the complexity of our issues about how you
decide, what do consumers really want. And if I look back at your Harris
interactive poll list there, it is very reflective of an exercise that
we\'ve been going through the last couple of weeks looking at how do we
rank these different functions, and do we need it immediately or is it
something for the future, and then we\'ve I guess summarized those.
We\'ll be talking about those this afternoon, is that right? Is that on
our agenda?

So we\'ve got an internal ranking of these concepts, and it\'s
different, frankly, from the list that\'s there. Now, this list, though,
is probably one of the people who haven\'t experienced it, so they
don\'t \-- you know, it\'s that first slide in your tire swing
illustration, they don\'t really know what they\'re experiencing. So
would you agree that \-- my first reaction to this list was should we
use this as a proxy for that consumer voice that says, well, this is
what we really want, or do we use a different kind of list that\'s the
informed consumer list, and what would that list look like.

I have another question, but we\'ll do that one.

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

I think that\'s a good \-- that\'s a very good question, and I think I
would agree more  with what they love than what they think they would
like. So I would take both the Harris interactive as well as even our
little voting exercise, which emphasized the convenience function, which
people get right away. Oh, it makes it easier to make an appointment.

But the value proposition, the sustaining value proposition, I think
it\'s a try it, you\'ll like it. So part of my message is it would be
really nice if we relied more on experience base than \-- and that\'s
sort of an evidence base, in a sense, than the guesswork. And it\'s hard
to do. And, you know, developers always struggle with do you just listen
to the focus group, you know, and tell me what you \-- and industry says
when you bring in a focus group on a new product, very often the focus
group is going to be wrong. Because they\'ll either say something they
love, like slide number two with a cushy chair, and then don\'t buy it.
It\'s very hard for us to imagine what it would be like to use it in
real life.

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

I just want to get some clarification on you talked a minute ago about
your \-- the credits that doctors would get for the online
communication. And maybe I don\'t understand your \-- are you a closed
HMO type of entity, is Palo Alto Health Care Foundation and Clinic, or
is it \-- are you the payer as well as the provider?

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

No, we\'re just a provider group, so we\'re a multi-specialty group
practice. We have both capitated and noncapitated. In California it\'s
like half and half, so it\'s always schizophrenic.

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

In those credits, none of them \-- you don\'t have any arrangements with
the payers that will reimburse you for that?

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

No

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

Just something you figured out is more efficient and some \-- is that
direction that you\'ll go, do you think?

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

No, it goes back to the \-- the providers, we need to get them \--
let\'s see, I think it\'s this \-- for the providers, we have to get
them reimbursed in and somewhat compensated for their professional time.
If the external world is not going to do it, we have to step up and do
it internally. But I think it would be appropriate for the external
world to view it the same way we do, which is professional time.

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

It\'s a little I suppose, the way, for example, some cardiology
practices work, where the \-- you know, the cathing cardiologist is
reimbursed very highly, the cardiologist who is seeing many patients in
the clinic is not reimbursed much, and so the group decides that it\'s
going to in essence revise the system, and does that internally, and
says I couldn\'t \-- you know, I wouldn\'t be doing those
catheterizations if somebody wasn\'t seeing the patients, we should do
something internally to fix that.

It does mean that the external system doesn\'t quite work, you know, in
essence. Jason?

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

Just a quick question, really. This may be the wrong metaphor to use,
but we focused a lot on to give out clinician work flow or physician
work flow. What about understanding the consumer work flow, for all
intents and purposes? We\'re sort of hearing a lot about survey data,
and we know that people act or behave different than what they say more
often than not. So I was wondering to what degree have you thought about
some perhaps maybe unique ways of really getting to understand that,
some of which are I think in the private sector of actually sending
people in and observing how people work with their health in a sort of a
natural setting to get a better understanding.

And also, it has the potential to sort of \-- innovation, or things can
come of that, instead of would you like this, would you like that.

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

Thank you for that question. I\'m a fan of ethnography. So what you
described really is ethnography. So I\'ve been doing that for a couple
decades. So one of the things we did do \-- we\'re working on another
thing called online disease management. Same kind of idea. We don\'t
need these sporadic, random visits, we need continuous connection.

So we are finishing up our alpha group, so one of the ways we\'re trying
to get information from that is by doing home visits. Why home visits?
Same thing with focus groups. You can come and tell me sort of what you
like. But what we wanted to get in the home is give me a tour of what
life is like, how does diabetes impact your life. How have you arranged
your artifacts at home to deal with your diabetes.

So one of our patients that I happen to visit was talking about, you
know, she\'s been a long-time diabetic and she says, you know, well,
what\'s the program been like for you? \"Well, because you asked me to
enter in my glucoses, I\'ve started checking my glucoses.\" Which she
hadn\'t done before.

Then she goes on to say, \"You know, after I got to plotting them I
figured out that what I eat affects my reading.\" Again, it is just
connecting the dots. I just wanted to kiss her, you know. This is what
we had dreamed, on the vision side, of thinking it would do to help
people with chronic diseases connect the dots, but give them the tools
to connect the dots, and to generate the self-efficacy.

So that\'s an example of that. Because they don\'t come in and tell you
that. And they certainly don\'t do it in the five minutes you have in
the office. So that\'s one of the techniques, that\'s the exact
technique we\'re using. So a number of folks that went on these home
visits, so we\'re going to get together later this month, in a group
visit with the patients and the docs and figure out what went well, what
didn\'t, and what should we change for the next go-around. But you bring
up a really good point. You\'ve got to find out how it affects \-- it\'s
like the folks through the one way mirror thing, like I said, they
don\'t run out of the office saying thanks for telling me that stuff,
but I\'m going to check. But that\'s exactly what they do. And knowing
that helps us to be better partners with them.

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

Question on the phone?

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

It\'s Rob Tennant with MGMA. Dr. Tang, first of all, thank you very much
for an excellent presentation. I\'ve got a couple of questions about one
of your slides on the Markle focus groups where their conclusion runs I
think contrary somewhat to what we learned in our last field hearing,
which is that the public don\'t want their employer to have any
involvement in the PHR.

What we heard from folks like IBM, and Dell, and Pepsi, and even the
Omaha Meat Packing Company, was exactly the opposite. That the employees
very strongly bought into the employer paid for and run PHR. I think
most of those companies, if not all, hired a third party to maintain it,
and keep that firewall between HR and the employee. And I wanted to get,
A, your thoughts on that.

Second, you say people trust their doctor to host, manage and access
their PHR. Well, as we talked about, there\'s no reimbursement for a
physician to do that. And are you advocating something along the lines
of a pay for performance program, perhaps as a demonstration for
Medicare to pay a physician a little extra money in order to host,
manage and access that PHR?

Then the third question, if you don\'t mind, is in your experience, have
you identified a particular standard that you feel would be critical to
gain the use by a whole \-- you know, wide variety of clinicians, for
example, CCR or CDA, something like that.

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

Okay, so let\'s see if I can remember the question. The first one was on
employer groups. I think the Markle that I cited was the focus groups
where they said they would like their doctors to host it, and they would
not like employers, insurers \-- they would not like. I think that\'s
consistent with what you were saying.

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

Correct.

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

No. We\'ve heard testimony from a number of employers who felt \-- who
found that their employees were enthusiastic about EHRs.

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

But I think that has to do with who\'s speaking, really. I think that
goes to \--

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

And I think probably employees like the idea that some service is being
provided. Would they like \-- in our Cisco example, the employees really
like it that it\'s coming from another group, not the employer. The
employer sponsors it, but the service being offered particularly by a
provider group.

The third one, which as I can remember, standard, I think that\'s
something that this group should work on. Is it a standard, what kind of
standard, what do you cover in the standard, is there certification.
That I think is still yet to be defined. To my knowledge, there\'s not a
standard currently for PHR. One thing I could make a comment on is we
want it to be consistent with whatever standards there are for EHR,
since it would be nice for them to mesh. The second question, just start
me off again.

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

Pay for performance as a way to incentivize physicians.

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

I think that is another idea that\'s going to be discussed later this
afternoon, in the policy levers. We have to find some way to support the
operation, whether it\'s a pay for performance or compensation for
professional service, some way to whoever the patients want to have host
and operate this tool, we need \-- society needs to find a way to
compensate that.

So I think one of the ideas you propose, pay for performance is a way.

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

Thank you.

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

Another question is Lorraine.

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

I\'m Lorraine Doo with CMS. Also, thank you. The beauty of your system
is it\'s connected to the electronic health record, which is ultimately
where everyone wants to go. And I know this will evolve, but I wonder if
you also have data on the ongoing utilization of the individuals who
have enrolled.

So what their average use is over the course of the year, if it\'s tied
to visits, and how you see that changing.

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

Okay. Much of the use is related to visits. So if an individual logs in,
in a given month, on average they\'ll log in four times. So part of that
also speaks to it\'s not that data is changing four times, but thinking
about what the data is saying to me, I\'m stimulated to go get
reflection or information multiple times, related \-- probably related
to some transaction. Whether it\'s in messaging or lab test results
becoming available. But I\'d like it to be their home site for thinking
about health.

Not only sickness, but health, as well. So my ideal goal is to get
younger and younger and get them more involved in preventing things.
Let\'s say preventing obesity. Like I said, I think the graphs people
are talking about in the messages are graphs of their cholesterol, but
it\'s changing their diet and exercise. That\'s really a powerful entre
and opportunity, and I\'d like to move it actually all the way down to
teenagers and young kids. If we can get them hooked on health early
enough, I think we may be able to give them tools to prevent some of
these illnesses and conditions that they\'re going to cause problem in
the future.

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

Justine?

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

Justine Hendelman with Blue Cross Blue Shield. I appreciate your
presentation, and I think a common theme we\'ve heard from you and the
past hearing that we had is the real power is when you can integrated
the provider and the consumer together with the information. And I think
what you\'re doing is great, but you are a larger group practice, and I
guess do you have any ideas or strategies of how you get at those
smaller physician practices? And when you look at EHR adoption,
obviously the curve is much lower for solo or small practices compared
to the large practices. And how do you motivate adoption in those areas,
where they may not \-- it may be a work flow issue, it may be a cost
issue, it may be a timing issue.

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

Good point. First let me make a comment about the partnership. It\'s
partnership with two existing groups, but I think both of their roles,
both of their roles, will have to change. So that\'s a cultural change.

Now, as far as the small practices, I think one of the enablers has been
the change in the STARC exemption. I think that will allow folks who can
capitalize EHRs and PHRs over a broader segment can offer help. I don\'t
know how to get over the it just cost a lot of money. And it costs a lot
of expertise, as well. Sort of IT, and informatics expertise to get it
implemented well.

We just have to amortize that over a greater population of provider side
and patients. So the biggest entre I see is how we implement the STARC
exemption so that we can find a way, equitably, to have more people, on
both sides, again, providers and patients have this available to them. I
think that\'s the biggest opportunity we have now, that\'s the most
significant one that\'s come up recently.

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

I want to ask a question that\'s been asked in a couple different
flavors now a couple of times, including just by Justine, and get you to
drill down on it. So while you\'ve talked about a tethered PHR, a PHR
tethered to the physician, what we\'ve been challenged here as a working
group is to consider patient \-- purely patient-centric PHRs, perhaps.
We\'ve had testimony from Medim in that example.

We\'ve had employer-provided PHRs, and we\'ve also had PHRs that have
been populated by the data, the very rich amount of data that payers
have, whether that be CMS or Blue Cross Blue Shield that are interested
in it.

One of the challenges for us and one of the recommendations that we need
to grapple with is how to stimulate a break-through, a broad adoption of
personal health records as a mechanism of transformation.

So should our recommendation be focused on the EHR and stimulate
physicians to understand the issue? Because for one, they\'re not
adopting EHRs, and two, those that are adopting EHRs primarily aren\'t
adopting PHRs linked to them, or that\'s a future plan. So should that
be our strategy from public service announcements, et cetera. Or is
there a strategy that embraces any of these other kinds of flavors of
PHRs as a bridge strategy until we get to \-- what would be your
thinking about these other varieties or flavors of PHRs?

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

I think the value comes from the integration, and that\'s again
experienced based versus, you know, trying to think about any one as a
stand-alone. And it\'s very hard for me to imagine, based on the
feedback we get, how you could separate the two and have the value stay.
And the sustaining value is what\'s going to drive the business model
that drives it even coming into being in the first place, let alone
staying in existence.

I want to add one thing to Justine\'s questions question about
strategies. I think another strategy involves employers. They are
another form of payer, and as you know, one of the problems is whose
bottom line are we talking about. And the payers probably have a lot to
gain. Employer may be the closest to the end \-- the end beneficiary,
the employee-patient. And I really think that partnership between the
provider group and the employer may be a good avenue. As a sponsor, in a
sense.

So we talked about the cost, and the barriers, but another group,
stakeholder, that can add to the sponsorship, the payment side, could be
the employer.

Charlie, I think we have to do both strategies in parallel. But we \--
and they actually are synergistic. So there\'s a lot of emphasis on the
EHR adoption side, with what\'s going on with the secretary at the
moment, and I think in parallel, what may be useful is for the PSA kind
of side, which will educate not only the consumer patient side, but I
think also the provider side, on yet another reason why it is to your
advantage in the overall caring for patients to have electronic storage
and dissemination and communication tools through an EHR and PHR. So I
think I\'m having a hard time, again, based on the experience,
separating the two and saying that we could succeed one without the
other. And so the only approach I can think of is going at it in
parallel, because both of them take calendar time. You can\'t just drop
a whole lot of money and it happens. Both of them are really cultural
change and transformative change.

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

I do have a couple questions. When you use the word physician having
access to the PHR, are you specifically talking just a physician, one
physician, or do you have a team that\'s made up with several different
clinicians helping you maintain that PHR?

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

Let me make sure I get the context. When we say a physician, it turns
out that patients do want to communicate with their physician. So
that\'s part of the value proposition. We do actually \-- at one point
we sort of offered a physician pool and advisors pool. Those aren\'t
used very much. If you think of the open access model, the reason it\'s
popular is not only can you get an appointment, but you can get an
appointment with your physician today. That\'s very potent. So to then
turn to the patient and say but electronically we just give you the
physician of the day, doesn\'t work. So it\'s the connectivity with
your \--

[\>\>:]{.underline}

So on their particular PHR, only their doctor is seeing it, like a nurse
practitioner, a physical therapist none of those folks are accessing the
PHR on the medical team?

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

No, you get communication access to all those PEOPLE that have a need to
know. People you\'ve touched. So people you\'ve had an appointment with
or YOUR PCP are on your pull-down list, and that\'s who you send
messages to. So one example, let\'s say on our online disease management
group, the clinical coordinator, the nurse sort of overseeing the
disease management of diabetes, is on that list.

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

Has access as well.

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

Correct.

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

All right, thank you.

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

One last question, we need to \--

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

This is Theresa Hancock from the VA. I\'m very interested in your
comment that patients can access their lab results going right from the
office visit to home. How do you prevent sensitive information being
relayed to the patient prior to the physician communicating to them? And
do they receive the lab information as soon as the physician signs off
on it?

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

That\'s a good question, and it\'s also an opportunity to talk about
state laws. So what happens is the \-- the instant the result is
available, it goes into the in box of the ordering physician. And that
person, after reviewing it, triggers a release to the patient. Which is
why most of the things are going to be available to the patient within
the same day.

Now, what if it\'s abnormal? So one of the things is, let\'s say it\'s
slightly abnormal, because there\'s lots of slightly abnormal. You
basically have that chance to annotate it, as I showed you, and you are
now sending the results and your annotation which can explain this is
right where it is, or we need to tweak this drug or whatever, and that
goes off to the patient.

If this has been something that we know a lot \-- let\'s say you\'re
managing Coumadin, the blood thinner, and we\'re saying I want to you do
this adjustment. We don\'t even need to physically talk to you, because
that\'s what we do every time you get your blood test, and the patient
knows all about it.

Let\'s say it\'s abnormal test result. What the physician will do is
hold that, that means it\'s called done, or acknowledge it, do the call,
the explanation, then release it, okay?

The third situation is, okay, having \-- first of all, it\'s a legal and
ethical right for the patient to have access to their test results.
Second, it\'s a patient safety issue. So in one example I remember \--
so a patient gets their pap smear result that was abnormal, only she
tells us she didn\'t have a pap smear.

What happened is \-- and we tracked it down, it was a mislabeled
specimen. But that was a safety net to say somebody who does have an
abnormal pap smear now needs to know about it. But the patient in a
sense became the safety net.

Mistakes happen. You want to have it done, and your last fall-back
position is the patient themselves. Either never hearing about that
result, or getting something that doesn\'t belong to them.

So what we\'ve done is we\'ve set up a sort of a service level agreement
to the physician that said, okay, critical results need to go back to
your patient, you need to contact the patient the same day. Abnormal
results, you get three days. Normal results, you get a week, okay? Just
as a fall-back.

And so after that, we will release it, period. Why? To create the safety
net. So I can guarantee all results will get to the patient. And that
will be their safety net.

Now, Cal \-- state laws, without being specific. HIPAA guarantees
everybody the right to have their data. In the state, they can say, but
not if it\'s electronic.

So that happened, you know, rush back and try to fix that law, in this
unnamed state, and then they \-- we partially fixed it. But one of the
things we did not fix, because it didn\'t pass, is that four kinds of
data are not releasable in electronic form. You can come back into the
office and get them paper, but can you not get these four types
electronically. One has to do with HIV, another has to do with drug
abuse, third has to do with things related to hepatitis, and the fourth
has to do with tissue samples.

Well, one of the number one things that really people want to know is
the result of your pap smear, because it takes a certain amount of time,
and then you don\'t get \-- and that is barred by the state law.

And so that\'s one of the obstacles, and again, a policy lever we can
affect, where these state laws get in the way of patients accessing
their data, and the tools we described, we need to work on some way or
another. Either by encouragement or by force, to let these things \--
prevent these impediments from arising.

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

Terrific. This has really been a wonderful review, and we appreciate
your not only presenting us the material, but taking time to answer our
questions.

We have about 15 minutes for our next topic before we break for lunch,
so can we manage that without a break? Yes? Good. Okay, thank you very
much.

We have an item here that we\'re a little late in getting to, but this
was a very valuable discussion, about the webinars that we\'ve been
seeing, and about the rankings that we\'ve been doing. So we\'re passing
around to the work group a preliminary and tentative ranking. And I\'d
like to say that I think it\'s important to realize that this tentative
ranking, based on our information and our view of what we\'ve seen in
testimony, and what we\'ve seen in other contexts, is indeed our view,
but is not necessarily where we\'ll end up. And as we\'ve been
discussing with the question on the phone, obviously you can get very
different answers about these, depending on the degree of experience of
people with a system, and what they think is likely to be very
important. These results, for example, wouldn\'t match perfectly
Dr. Tang\'s population, you know, of 70,000 people who have been
thinking about this.

So but nonetheless, we\'ve devoted a good bit of time and thought to
this, and I wanted to, now that we have these in hand \-- so here we
have the overall ranking for the functional categories, and one of the
important things we did in this last ranking was to divide them as to
things that we thought were essential now, essential in the future, and
optional. And with the idea that that would give us a little better idea
of how one might order the development of this.

And I\'d invite comment from the group. Surprises, if you\'re surprised
by how they\'re ranked, or yes, this is just the way I thought it would
be, or how could that possibly fall out that way.

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

Rosemarie, I think when we get to the business models that we have to be
very careful here, and I think that we need to also explain, at the same
time that we explain the rankings, where everybody is seated. How many
people are representing insurers on this panel, how many are
representing doctors. Because obviously that affects this. And I think
that\'s very important for the consumers to understand that.

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

Marc?

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

I\'m sorry, this is Marc Boudin, National Health Council. The education
information, support patient health outcomes are not where I would have
guessed they would be. So I just find that interesting.

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

And I guess in terms of administrative features, so it ranks not very
high, even though it might be \-- your surprise there is it might be
essential to things like linking up with an EHR, and might be, you know,
very helpful to essential for registration purposes, which we know are
important, you think this ranking reflects the fact that we think the
public doesn\'t understand that, and won\'t care about it?

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

I\'m struck by the comments from Paul earlier that we really have looked
at this from the perspective of people who have not had experience, as
opposed to those who have had that experience. And I think that\'s quite
striking.

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

Uh-huh, Lorraine?

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

Lorraine Doo, CMS. I think there are a couple things that do make this
difficult. First of all, some thing has to be first. So when you\'re
ranking something, you know, you\'ve got an order. So that\'s always
tough. And I think that the other thing that\'s interesting is the
essential now, versus the essential future, is that if you look at some
of those other more complex tools, those are deemed important. It\'s
just we don\'t have the resources, technically and from an EHR-PHR
connectivity, to expect that now. So I think they do gather in
significance as we realize that we\'re going to be able to move into it
from a technical perspective. So it\'s not that they\'re not important.

And we are going through the same kind of exercise in the HL7-PHR
functionality work group to tie to the EHR functionality, and the same
difficulty in what can we do now, that we really should require, and
what will we be able to do later, that we really should require.

So I think it\'s an important but a difficult exercise to really say
well, they don\'t care about this because they don\'t know, because
it\'s \-- they will care about this, because we\'ll be able to provide
it.

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

This is Marc Boutin again. I completely agree, I think you\'re
absolutely right, and that\'s part of our challenge. The part that
strikes me, though, is looking at this in terms of consumer empowerment.
It\'s problem identification, solution, and will I do the ASC. These are
the components that are going to compel yes, I will do the ASC, which
means if we can\'t address these, empowerment is virtually impossible.

It goes to the point of how you\'re going to mobilize action. So by
putting them lower on the screen \-- and I completely agree why \--
it\'s much more challenging, if not impossible, to mobilize anybody
except for early adopters. And I think that\'s our challenge. So I would
rather, even though they\'re difficult, especially given the charge of
this group, put them at the forefront, so that we can actually create
the ASC to mobilize.

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

Ross?

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

If I had to answer your specific question about like administrative
features, why is it number nine in our overall rank, I know when I was
interpreting \-- these are always subject to interpretation. The
question was rank them in order of importance. And, you know, is that
the value, is that the dependence step versus other things. To me it\'s
very reflective that the essential now was 73 percent for the
administrative features even though it was ranked ninth. Everybody knows
you have to be able to give privileges to people, be able to give access
to certain doctors versus others, and all these things have to be in
place, or this won\'t work. There\'s no value in that, you just have
administrative tools to manage what.

That\'s what to me is ranked here in terms of importance, and value. And
like for me, I know I put prescription refills first just because my own
experience with looking at all these different examples over the last
several years, and what people tend to do a lot of, that\'s one of those
low-hanging fruit, high quick return to a consumer. They like this,
it\'s very useful for them. And I think that\'s probably reflected here.

Is it the most valuable thing a PHR can do? No, it\'s more of a
convenience thing. But it does provide that asset that we can do. We
know we can do it, the wires are dangling, that\'s something that can
happen.

As you go down the line, like decision support, truly, in patient health
care, health outcomes, on the call I was one of the people advocating
for this one in particular, but I actually ranked it myself very low.
Not because I didn\'t think it was extremely important, but because
there are these other pieces that have to happen first before we get to
being able to do real decision support, real patient outcomes. And in
terms of educational information, I think my interpretation of why this
might be low is health education information is already out there. You
can find stuff. It\'s the question of, as Paul so eloquently brought out
in his presentation, it\'s got to be tethered to me. It has to be
educational information that\'s targeted to me. And until you have this
other stuff in there, it\'s not going to be.

So it\'s not helpful to have \-- not health-wise or any other sort
of \-- if I\'ve got health-wise information on my PHR but it doesn\'t
link \-- it doesn\'t scale because of where I am, and what I need, that
doesn\'t \-- that\'s not more useful yet.

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

I think you know Paul\'s experience with people saying this information
was extraordinarily useful to me, and it really made me do something
very different. I mean, speaking as a second generation house call
physician. Much less than my mother did, I must say. You know, you learn
extraordinary things when you walk into people\'s homes. And seeing how
that impacts their daily life is very important.

I guess there are \-- perhaps, when we started doing the essential sort
of ranking, maybe what we were saying there was that we have perhaps \--
and let me just throw this out \-- three sorts of things. There are
things that are essential because they will make it work. And they\'re
in the background. The consumer really hardly needs to know about them.
So that, you know, administrative features, we obviously all thought
were quite important, and it got a high ranking in terms of essential,
either now or in the future. Conditions and allergies. Highly essential.
Both of them ranked much lower than other things. So there might be the
things that we know would be either \-- would make it work, then there
would be the things that would build value for the consumer or the
provider or the payer, the employer, the insurer. So those are things
that will make it be adopted, and be sustainable, and scaleable.

And then there are the things that, wow, they would be really nice to
have and we \-- you know, but they can wait.

Do we have sort of several \-- Kelly?

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

Yeah, I agree with that. I think also I was thinking in terms of if
there is a convenience factor, or just sort of deriving some kind of
immediate value to initially engage the consumer, to just have a tool to
view their lab results or a tool to do online consultation, and that\'s
just enough to just initially engage them. And I think to get to Paul\'s
earlier comment, if we are all \-- you know, generally thinking we need
to be building to a sustainable value based system, that will encourage
the integration of care, and consistent communication and coordination,
then we need to be thinking that sort of how to build on \-- you know,
over time, to enable the most important functional areas, or what a PHR
could do, that really does deliver value to the patient. So that they
get the evidence-based health information that they need that\'s
specific to their conditions, and that they can, you know, talk \-- or
communicate with their clinicians or their health care team about the
decisions that would best meet their needs based on their preferences.

I think those are incredibly important things that just require a little
bit more infrastructure building, a little bit more standard setting, a
little bit more policy development, that we\'re going to have to really
flesh out. And hopefully get into, when we start this visioning
exercise. But that what seems to be apparent early on on our list is
okay, what\'s going to be easiest for me to get my next prescription
filled .or how can I, you know, be managing my complicated set of forms
with the insurance company through administrative features.

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

Charlie?

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

I\'m wondering whether the way to present this is really by ranking
essential now, because you get a slightly different picture. But it
actually looks a little more clinically relevant. So by doing that, you
get conditions and allergies first, prescription refills second.
Obviously, you don\'t want to fill a prescription for someone that has a
known allergy. So it seems to me you\'d want the allergy first.

You get lab results third, which is what we heard from Paul. You get
administrative functions fourth, online consultation fifth, reminders
sixth. Summaries of health encounters, seven. Education, eight. Health
outcomes, ninth. And decision support, tenth. And I just sort of wonder
whether that actually gives a better picture of what we\'re really
thinking than the other ranking of overall rank. I mean, you know, it\'s
another way of presenting it, but it sort of makes more clinical sense
to me, or more sense both in the discussion that we\'ve heard from Paul,
but also how you might try to organize it. And perhaps really what
we\'re thinking is actionable at this point in time.

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

In response to that, this is Rose Marie, and to Gail\'s comment. So
these rankings are overall rankings, and obviously they are different,
whether we\'re saying this is what will make this be useful to the
patient, this is what will make it be adoptable by the provider. And so,
you know, we didn\'t give you kind of the whole spreadsheet, because
then it\'s very complicated, it\'s many pieces of paper. But do we want
to mold that all together, or do we want to separate that out in some
way, as we think about it?

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

Just a comment on that specifically. If you look at the essential for
the future, and put those in order, you start to get at the things that
are most important to patients. So if you have those two lists, you get
a snapshot that looks at it from both directions.

I do again point out that if you\'re going to look at it from the
perspective of what is most easily attainable now, it has direct
ramifications of how you mobilize or empower. And I think that given our
charge, there\'s a little bit of a challenge with that. Because if we
are supposed to empower, looking at what is most easily attainable now
is probably not going to do it. And there are some challenges there that
concern me.

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

Paul?

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

Paul Tang. I\'m wondering if we may be overinterpreting what\'s here.
Because we all came at it with a different context, even our definition
of what even a prescription refill is. And I think we\'re working on the
left side of the sustained value proposition.

So as a lumper, I wonder if we\'ve gotten the information just in two
categories, which is now or later, without ranking in between, because
we just really are coming at it from different contexts and different
definitions. We probably should concentrate on the focus that are in the
now column, and then look more towards the future column, without \--

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

Also I want to say in terms of how this will end up feeding into, you
know, priority setting at the community level, and then, you know,
internally on how we \-- how we focus contract, and a lot of activities
that go on outside of our efforts and outside of our office, I think
that we\'ll probably need to think about how we can present
recommendations the end of October that\'s going to fit into that
priority setting process. And we\'re still trying to flesh out exactly
what kind of level of detail we need to be providing.

But it could be that some kind of \-- you know, dichotomous, two
categories of where we think this is essential in the next two years,
versus this is essential but we know we realistically can accomplish it
and there are a lot of interdependencies, that might be enough. But I
think also if in fact you have to think that there is seven working
groups that are going to be proposing recommendations, not all of them
will be fitting into priority setting. But then there\'s outside
interests, some of you may know that the secretary now wants to
establish a working group on personalized medicine, and there\'s going
to be potential use cases coming from that.

So there\'s a really broad spectrum of everything that we could be
asking for standards harmonizations on, NHIM prototypes on,
certification as it relates to what we\'re doing.

So I think we don\'t need to finalize this today, but \-- and I\'ll try
to get back to you, I\'ll give you more context on what kind of
specificity we\'ll need to describe in our recommendation, that will
then allow for that prioritization process to take place.

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

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

I think when I was filling this out my left and right brain were
fighting with each other. Because I think what you\'re trying to do,
we\'re saying we\'re trying to empower the consumer, which we\'re
labeling the consumer as the patient. But the reality is that to be able
to empower the consumer we have other interest groups like the clinician
and the insurers that want a part of this, and to make it work, you have
to sort of balance out their desires with the patient\'s desires.

So when we say we\'re going to help the consumer, and get empowerment,
well, it\'s going to have I think some caveat in order to deploy any
type of PHRs. These are the realities, and the realities are, and the
balance with what we can give the patient now.

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

This is Rose Marie, there is a tension here, and I guess \-- let me
throw out the idea that since \-- you know, we\'re all problem-solvers
who are looking at how it would all fit together. And we could all try
to write and construct either separately or together a system that would
work. And we would know about all those conflicting issues that would
need to come together.

I\'d propose that we stay as close as we can to the name of our work
group. And say that, you know, even if we\'re proposing things that are
hard, that that\'s okay. You know, we can\'t propose things we think are
impossible. But we can propose things that we think would be a little
difficult, to make sure that we\'re acting for the people that we\'re
supposed to. Does that make sense to people? I see nodding heads around
the table? Jason?

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

Jason Bonander, CDC. A quick point there, back to Marc\'s point as well.
As I remember from the instructions, we were thinking about adoption, or
adoptability, versus empowerment. And I think that\'s your point
exactly, I think a lot of us were probably focusing on adoptability
versus empowerment. And I think if you think about adoptability versus
empowerment, then you do have \-- the other side would definitely be
emphasized.

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

Ross?

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

Well, amen to your statement about thinking about the name of our group.
And when I look at this ranking, based on responses from 12 of our
members, to me it\'s like on the evidence scale, it\'s the \-- you know,
expert panel that\'s asked to give recommendations about their
experience, and their \-- you know, about in vitro fertilization. You
know, some medical, clinical condition. And then you\'ve got, you know,
the next level, and you eventually get up to gold standards of clinical
trials, double blinded placebo randomized control trials. Then at some
point you do the meta-analysis where you\'re taking all that stuff and
running it through the statistical grinder and coming up with the truth,
quote. Or some approximation of that. I think that\'s what we have here,
is a very informed but rough view. That needs to be put in the context
of we\'re getting more and more evidence, it\'s still early, but, you
know, Paul\'s group is one example of people who are actually doing
studies and publishing information on results.

And as that stuff trickles in, and we can do this bigger picture where
we do get to the truth, until then I think we have to rely on less than
perfect amalgamations of that.

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

Paul?

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

What Jason said about how we may have interpreted this, versus \-- so
empowerment versus feasibility. And I wonder if we cut this two ways,
because I could more clearly answer this if we said what supports
consumer empowerment. And you can see why administrative features would
fall to the bottom of that list. But for example, prescription refills
may not be at the top of that list, either. If we\'re saying what \--
and then we have a separate category about feasibility. And it might be
feasible now, rather than essential. Essential has the blurring again of
is it essential for empowerment or essential for \-- and if we clearly
delineate what it is we\'re asking of ourselves, we\'ll get probably
more consistent but probably a better answer for us to work from. I
think it would support your October 31st letter. 

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

We might just take a minute to talk about where we are in the visioning
process. Do you want to just say a little bit about that?

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

Sure. I would like to say, though, in order for us to be clear on what
you all want, we probably do need to settle on do we want to be thinking
about not necessarily feasibility, but if we do take sort of this
consumer empowerment view, do we think that a step towards consumer
empowerment is actually getting them enrolled or getting them to sign
up. And if it\'s that hook, is it the convenience hook initially, but
then you have these \-- so I think if we\'re going to reevaluate our
criteria that we\'re using for this, we need to be clear on the path to
consumer empowerment. So the initial feature or functionality that might
be viewed as fundamental for consumer empowerment, you know, evidence
based health information, or decision support, or patient reported
outcomes, that that may not be the reason they say yes, sign me up,
Dr. Tang, because I can get \-- you know, I can get communication with
you, and decide on my \-- you know, treatment for my staging of breast
cancer, which is a classic example of what shared decision making might
be.

So I think we should be a little bit clearer on what we really want to
be saying is important now for what reason.

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

Paul, do you want to start?

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

Paul Tang. One of the challenges is, is it possible with your first shot
out of the gate, can you actually hurt your downstream effort? So
that\'s an example of again the swing. What if you said \-- got this
great thing. And you built swing number one. How many times are they
going to come back to you? Or \-- and I think the reason for taking it
outside of our environment is it\'s easier to think of things like that.
Then you take it in our sight \-- what if we offered PHR, but half the
meds were there and half the diagnoses were wrong? I\'m just making that
up. What would it do to the trust? Remember, trust, in my opinion, is
one of the biggest thing. You\'ve got to be trustworthy not only from a
privacy, but just pure competency. Are you doing something that really
will benefit me. And if you prove me wrong \-- this works with
physicians too \-- in other words, if you promise them something and you
don\'t deliver, it\'s a long time before you get to work with them
again.

And I think the same would be true of patients. Particularly if it\'s
something that\'s not immediately recognizable. I suppose you could do
ATM, it took a long time, and we either can hammer on that. But we
didn\'t make too many mistakes in the sense of the function was there
all the time, it took culturally a long time. Here, what if we had an
ATM and it actually five percent \-- only five percent of the time it
took out money from the wrong account. Probably would take three times
as long culturally to get them back.

So that is a cost we\'d have to weigh. It doesn\'t mean don\'t do it,
but we have to weigh that.

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

I think one of the challenges for people that do implementation and try
to figure out why, typically it\'s not just one thing that is useful,
and that\'s because our patients really are \-- and consumers are quite
heterogenous in their needs. So we\'re not really talking about one kind
of consumer we\'re not talking about one setting.

So I think Paul \-- I don\'t know, maybe he called it CSF, which I
thought was cerebrospinal fluid, but critical success factors. I would
describe it as critical mass of functionality. That you actually need a
fair amount there, because for some patients, you know, even getting the
health wise might be useful, and it costs you nothing to have it. So
I\'m sort of wondering whether we\'re sort of struggling with \-- it\'s
really the strategy to get this stuff out there, rather than the
specific functions. Because you sort of need most of these, I think.
And, you know, you certainly have time to improve it, and I think
Paul\'s wisdom about not using up the good will of the consumers and the
physicians too early is a critical factor. But again, just trying to
separate out each of these maybe is not a useful exercise, in the sense
that we can sort of do all these things now at some level.

You know, and the more of that critical functionality you have there,
the more likely you are to work \-- to have something for some segment
of the population you\'re trying to reach. It\'s not one size will fit
all. If you don\'t take medications, having a prescription refill isn\'t
going to help you.

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

You know kind of in response to \-- this is Rose Marie. In response to
that and to Paul\'s presentation, the thing that really struck me was
that it was perhaps not unexpected, but the result from graphing was
huge. So when you presented patients with a visual representation of the
connection between their action and an outcome, you got a huge result.

And you might have put that in there because you thought it was kind of
nice, but you might not have really put it in there because you said
this will produce the outcome that I want. Maybe you were clever and put
it in there because you knew that would work, but \-- so some of the
things that we have in here, maybe they\'re useful as a thing, but maybe
in fact it\'s the way they\'re presented that\'s going to make the
difference. And that when we study this, we\'ll say, well, it\'s fine to
have the list of conditions and allergies, but if you don\'t put the
allergies in red in big font it\'s \-- you know, the physician is not
going to see it. Or if you don\'t have it provide decision support so
when he prescribes that medicine, a big flag comes up, it doesn\'t
capture things, or maybe it needs to do it automatically.

Likewise for the patient. If you don\'t present it visually, you don\'t
get the impact on outcomes that you want from having a lab result there.

And I guess \-- so then the question is, in empowering the consumer, and
helping the consumer to be a better partner in their own health care,
some of that will in fact kind of come later.

So we may be over-analyzing this because we don\'t really know what the
features are that will make these things really work for patients. Marc?

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

This is Marc Boudin again. The research we did at the National Health
Council actually identified four overlapping audiences that could be
mobilized with respect to these sorts of activities.

One of which was a group that sort of viewed this as a convenience
factor. But what was clear was that the audiences overlapped, and does
speak to the \-- your point earlier of these are really a combination of
things that people care about, but it\'s important to look at them as
total package, and to look at them in the context, as you were saying,
of clear health communications.

I think this speaks to Paul\'s presentation, the really value added is
when people understand their health information, they\'re able to be
more compliant, and make better health decisions. That\'s when they
engage. That\'s when you have sustainability.

And that really speaks to how these records operate with the \-- and
engage the consumer. And I think that\'s the critical piece that,
looking at what\'s going to bring them to the table is going to be a lot
of the factors we identified here. How we communicate it out,
convenience is a great selling method because it\'s easily understood
immediately. But sustainability, and real value, is going to come from I
understand what this information means to me, in a way that I never
understood before. And it\'s a graphing, it\'s the pictures, it\'s the
language level, it\'s the ethnic and racial issues that need to come
into play.

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

And is our assumption is that providing knowledge is sufficient? Because
you know one of the things we think about, say, with \-- you know, the
work that the American Heart Association does, we can provide people
didactic knowledge, and we\'ve been doing that for years and it\'s good
and it helps people. But unless you engage them and impassion them about
something, sort of more than empower, but provide them something in a
way that \-- advertises to them, that does what our colleagues in
industry do so well. You know, get them to buy a different kind of
sneakers because they really get them attached to it.

You know, you really \-- you need to do that with the people who are
going to use this. And that\'s \-- that seems to be what the graphs do.
Suddenly it makes it visual, and important. So it\'s not quite just
handing them the information, it\'s giving it to them in a way that
actually creates behavior change.

Other thoughts about \-- Jason?

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

This is Jason Boutin from CDC. As we\'re talking about it here I can\'t
help returning to Paul\'s ATM example. ATM is a wonderful example of
consumer centered technology. In a sense that they have control, more or
less complete control of what\'s going on there. If we think about that
data comparable to the national health data, the key question, getting
into the some of the things Charlie was saying, the strategy, less the
functionality and more the strategy, of how do we leverage and empower
around control of that data. As opposed to the features and functions
that will sort of allow people to make better decisions.

By extending that a little bit more from a thought experiment
standpoint, thinking about how many people do from a \-- have a
personalized access to their bank online, probably do, some people, and
degree to which how successful is that from the bank\'s perspective or
anybody\'s perspective to try to get people to change their behavior
with regard to saving more, which is a huge issue right now. Or
performing better with your money. But I suspect that it\'s still around
control, right, of the data. And being able to control and have access
to and do whatever you need to do around that.

So actually one last thing, it will launch us into this afternoon\'s
discussion around the policy levers, I think that\'s where we start to
get into some of this.

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

So to bring this part to a close, we \-- I think we\'ve seen some
problems in the way we\'ve got this presented for ourselves here, we may
have overanalyzed it a little. But this is useful data, and it is \-- it
does come from a group that has thought about this a good bit.

How would it be if we took \-- if Nancy and I and the staff took this
and took a stab at re-presenting it in a way that seemed to make, at
least to us, some sense in terms of what we might be able to say about
it, and then send it back out to the group? Is that okay? We don\'t, I
think, want to abandon this.

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

Ms. Robertson, would that be kind of as Paul is describing, a lumping?

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

Yeah I think a bit more of a lumping.

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

The validity of these numbers in terms of \-- you know, is 36 percent
less important than 45 percent? We obviously can\'t really tell that.

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

Right.

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

But I think there are some basic prioritizations that are valuable in
here.

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

Yes.

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

I\'d be more comfortable presenting it in that way to AHIC, than as a
rank.

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

Right. Is there general agreement about that?

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

I think one of the things too we\'ve all talked about is there is a
minimum set of core content that is very important and is hard to rank.
But obviously understanding the work that needs to be done, certain
priorities may have to be deemed, but I think we would all agree that
all of this is important, and I think that needs to be said.

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

Paul?

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

As a separate exercise, would it be useful for the October 12th meeting
to use Jason\'s definition of saying what are the most important
features for consumer empowerment, and that can drive \-- October 12th I
think is going to be discussed as a visioning, kind of, and the lumping
is a really good way of interpreting what we have here. But as a feed-in
to what are we thinking in terms of visioning, unfortunately without the
couch, it might be helpful to get collective wisdom on the empowerment
side of these functions.

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

Yeah, we\'re going to talk a little bit more about the empowerment \--
about the visioning process this afternoon. So that\'s a good thought.
And let\'s hold that and feed that into this, I think that\'s a good
thought. We are now past time for lunch, everyone is no doubt hungry,
and we can find lunch either at the cafeteria \--

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

Yeah, there\'s a cafeteria on the eighth floor and there are a few other
places within walking distance, not a plethora, but actually it\'s been
newly renovated in the last six months, the cafeteria, so it\'s better
than it used to be.

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

And we\'ll start back again at 1:15. Thanks very much.

(Break.)

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

All right, for people in the public who might be on the phone, we\'re
starting a little late, but we\'re about to get started here, asking
everyone to take their seats. And this afternoon, we\'re going to begin
with a \-- we\'ll have two panels. Our first panel is on personal health
record consumer engagement and literacy. And that will run to 2:30. 10
to 15 minute presentation by each person, followed by our work group
discussion. And we\'ll start with Marc Boutin, executive vice-president
of the National Health Council. Marc?

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

Thank you very much. Appreciate the opportunity to give testimony, and
you have written testimony before you. I\'m going to try and summarize
some of the high points.

Let me start to say that the National Health Council\'s goal is to
normalize the use of electronic personal health records as a standard of
care. A new standard of care.

And let me explain, the national health council is an umbrella
organization representing approximately 100 million people with chronic
conditions. They are our focus point. Our members include many health
care stakeholder organizations, with a particular emphasis on patient
advocacy organizations like the American Heart Association, American
Cancer Society, as well as many other smaller nonprofit organizations
that represent the interests of patients.

For approximately 100 million people with chronic conditions, electronic
approach to health records have the opportunity or provide the
opportunity to help improve the quality of their lives. In many cases,
it actually provides the opportunity to actually save their lives.

How many people are actually familiar with alpha 1, which is a rare
disorder? It\'s a rare disorder impacting a small number of people. They
have an organization representing this group, and they\'re a member of
our organization.

I want to tell but an example of a woman with alpha 1. Alpha 1 is
essentially a genetic emphysema. And this woman went into the emergency
room, presenting of a condition that looked like severe asthma attack.
Because of the complications she was having in the emergency room she
was actually intubated, and as a result of that they put oxygen into
their lungs.

When you have alpha 1, that literally blows your lungs up like balloons,
and explodes them. And the woman died. That is not an uncommon situation
for somebody with alpha 1. It\'s not an uncommon situation for many
people with chronic conditions.

If we had the opportunity to have electronic personal health records
that could follow this person into the emergency room, we would have the
opportunity to catch these issues, and hopefully have a much better
outcome.

We know, as well as the many members of our organization, from extensive
consumer research, that people are often confuse and frustrated by a
health care system that they do not understand, while decisions that
affect them are made every day without their direct involvement.

As a result, a lot of people with chronic conditions do not comply with
medication regimens or health regimens, they do not schedule follow-up
visits. People are often not provided appropriate end of life care. They
find themselves in emergency rooms, as I said, with doctors having to
make life-altering decisions on their behalf with extremely limited
information.

We believe that patient-focused electronic personal health records
provide the opportunity to dramatically improve these situations.

Electronic personal health records that focus in on clear health
communications have the ability to directly impact the understanding of
patients and their family caregivers of the health situation around
them.

The example we heard earlier today of providing a graphing that tracks
somebody\'s health outcomes can have a dramatic impact on how they
understand their own personal behaviors as well as their health regimens
on their own health outcomes.

When you look at clear health communications \-- and this goes beyond
health literacy \-- it\'s a way to communicate information that takes
into account the personal needs of the individuals you\'re trying to
communicate to. It\'s how do they perceive their health information, so
that they can make better decisions for themselves.

Again, it is our hope that electronic personal health records will focus
in on managing the patient, not the disease or disability, providing a
much more holistic view leading to major improvements for clinical
health outcomes for these individuals.

I want to spend the remainder of my time speaking largely about the
social marketing issue. There have been a lot of examples in public
health work that have dramatic improvements in changing social
behaviors, and it\'s certainly our hope and belief that we can do the
same applying some of those principles to electronic personal health
records.

What I want to do is outline how social behavior can be changed through
these models and communications. Typically, these communications go
through three stages: Public awareness, increased saliency, and
motivating action. It\'s in the first stage where you essentially put
the issue on the radar screen. You identify the issue for the general
public. Core question the administration needs to answer is why should I
care? Why should people care about personal electronic health records?

Once you\'ve answered that question through your communications, you
need to raise the saliency through this issue. We all watch the news
every day and we see issues addressed on the television. And sometimes
you can be broad set level of outrage, but then it goes away. How can we
ensure that electronic health records are put on the radar screen but
don\'t just disappear.

The core question we need to address is why do I have to be involved.
Why should I address electronic personal health records if it\'s not
impacting my personal life.

We need to be able to answer that question, how do electronic personal
health records or how can they impact our direct lives. Once we\'ve
addressed that point, we need to be able to address the action steps
that are going to motivate or change social behavior. Again, the core
question here is what do I have to do to fix this problem.

This is where you get to that ASC, and we struggled a little bit with
this earlier in the morning, when we start to look at electronic
personal health records, is this a topic that\'s ripe to identify an
ASC. I think we\'re able to start to identify what the problem is.
Certainly the lack of involvement for patients and their family
caregivers in managing their own health care, safety issues, quality
issues. The problem is pretty clear. The solution of electronic personal
health records and health IT seems equally clear.

But now, how do we pitch the ASC. Typically, an ASC requires identifying
two activities. A believable and doable solution to the problem, and a
series of actions that people can take that they\'re both willing to do
and believe will actually bring about the solution.

We need to be able to frame this as a problem, a solution, and specific
actions that people can take that are actually going to change their
behavior. That are going to make the widespread adoption and use of
electronic personal health records a reality.

It\'s these questions that we looked at when we did research at the
National Health Council, focusing again on people with chronic
conditions. And I point this out because people with chronic conditions,
again, approximately 100 million people in this country, are different
than employees or different than general public. These are people who
are regular users of the health care system. People who have from time
to time had challenges, have certainly not had their quality needs met,
but they are people who are looking at this issue through a very
specific lens.

We did a literature review, and an environmental scan on this topic. We
did exploratory focus groups which, as we all know, have limitations.
Our focus groups were done through what\'s called a computer assisted
technology, so the individuals are actually in their home. We find that
this eliminates some bias in terms of the interaction that happens in a
focus group, but also allows us to do multiple demographics from across
the entire country.

Again, focusing in on people with chronic conditions, as well as their
family caregivers.

We developed core message concepts, and tested these messages on
one-on-one interviews. Trying to get at what are the messages that work
the best in terms of framing the problem, the solution, that leads us to
the point of being able to mobilize certain constituencies to actually
take action.

Overall, research showed that patients and their family caregivers are
eager to have better access to their own health records. They\'re eager
to have their providers have access to this information. And they
certainly would like to see the system streamlined and coordinated and
integrated. As has been mentioned, I think we all recognize there are
serious concerns about privacy, security, accuracy, and user-friendly of
the information.

Another aspect that we learned which was interesting is a sound bite is
not going to work in this situation. We can\'t come up with a tag line
that is going to address this problem.

We also learned that people did not become aggravated or impatient with
detailed information on this. Which is counterintuitive, in this
so-called MTV generation \-- which I don\'t people even say anymore,
which dates myself. But in this day and age, people are willing to take
information about their own health. And if you think about it, it\'s not
terribly surprising, because people spend hours on the computer looking
for health information.

Another point that we learned is they dislike slogans. We had one
message that focused in at the end about a disaster, and it ended with,
\"Because when a natural disaster or other emergency strikes, you have
enough to worry about.\" Our groups empathically disliked that because
it sounded like a slogan, it sounded like a commercial for computer
technology firms who were trying to make money.

One of the other points we learned is that people want their
information \-- this information to be conveyed by a trusted source.
They viewed their providers as trusted sources. They view the voluntary
health agencies, the patient advocacy organizations as well as some of
the that represent clinicians, as the trusted sources to deliver this
information. So we know what messages can identify the problems, the
solution, who needs to deliver the information as a credible caring
source.

We need to identify what the ASCs are. To that point, the National
Health Council is working with America\'s Health Insurance Plan on
developing some pilot projects that would allow us to look very
specifically within certain communities how we can develop the ASCs with
these messages. The reason we\'re working with AHIP is because AHIP has
developed a portable personal health record based on claims information
data that is available now in large segments of the population.

It provides a very specific ASC that prospects security and privacy for
the constituents we represent. It\'s not at all the only potential ASC,
but it\'s a very viable ASC that makes it very concrete, that gives it a
very tangible product to people with chronic conditions.

When you look at what could potentially be the public-private
partnership relationship, there are a number of areas that I think we
need to explore. I think first and foremost we need to do a little bit
of research here. CDC has done a number of great activities in terms of
the public access models that have had dramatic success, when you look
at tobacco control, obesity, a number of different safety aspects.

A lot of those models can be applied here. It\'s slightly different in
some respects, it\'s certainly more complicated in others, but there are
certainly rules to develop community-based projects that create
community-based dialogues that are sequenced that give people action
steps that create a dialogue where people learn about this issue, that
makes it real for them.

There\'s also a huge opportunity to create what we call in this arena
the echo chamber. And this is the public service announcements that
frame the issue, and allow the community-based programs to work with
that echo chamber around them. And it gives a level of coordination.

Let me start to conclude by saying that issues of privacy and system
security have not yet been resolved to perfection. But we at the
National Health Council believe that we need to move forward with a
sense of urgency.

People are dying every day for the lack of critical information and
other inefficiencies in the health care system. People with chronic
conditions having safety issues, finding themselves in the situation I
described earlier. Being able to manage quality of life issues. These
people could benefit now, with the technology we have.

It\'s sort of the classic situation of the perfect is the enemy of the
good. We have the technology now, we need to use it and get on with the
business of saving lives, and we need to try and perfect the technology
as we move along. Thank you.

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

Marc, thanks very much. We\'ll go on to Dr. Smith, executive
vice-president of the Academy for Educational Development.

**[WILLIAM SMITH:]{.underline}**

Thank you very much, it\'s very much a privilege to be here today. I had
an opportunity to participate in one of the early discussions of the
role of social marketing in electronic medical records, but this is a
first chance I\'ve really had to think about it for personal health
records, and I want to make sure you all understand I am not an expert
on PHRs.

I\'ve really been asked to sort of as a social marketer give you a kind
of glimpse of \-- a first look glimpse at how a social marketer might
look at this particular problem. And like Marc, the question was raised
of public-private partnerships, so I\'ll try to address some of that.

There is a little book with a little black spiral thing that if we could
go through together it would help me, anyway.

Turn to page two. Communications is one very small and last part of a
marketing process. If I were to give you a single recommendation, it
would be to find as many Paul Tangs as you can in the world and put them
in charge of doing this in all different kind of settings, because it\'s
one of the best descriptions I\'ve heard of social marketing and
practice in a very, very long time, and I\'m actually trying to get him
to publish an article in a social marketing quarterly so we can all know
about him.

But the process that he described is just exactly the kind of thing that
we have found works over and over again. And it is a process which
begins not with a message, but with a product. What is that product
going to look like. And I\'ve sort of listed the four things, here.

What is it going to be, and what\'s the service going to be. Who is it
going to be for. And those questions are usually answered
simultaneously, because they vary. Where is it going to be available.
What\'s it going to cost to people. Either in terms of money, or time,
or those things. Work out the answers to those questions. And then begin
to talk about it in terms of the benefits that you have found people
care about, after having gone through that long process.

Let\'s go to page three. I thought I would make a quick differentiation
between commercial marketing and social marketing. Commercial marketing
really needs to answer two questions. What do consumers want, and will
it be financially viable. Social marketing adds a third question, will
it do anything positive for American health. There are products which
people buy and love and people make lots of money off of, but they
don\'t necessarily do anything about our health. Our job is to sort of
add that third criteria and make sure we don\'t create something
everybody loves but doesn\'t really do anything for their health.

There are three similarities, though, that we share that I think are
important for you to consider. One is that even the greatest companies
in America never pretend to have total market share. We in public health
want to immunize 100 percent of every child in America. We don\'t really
understand market share. We want to get everybody we can to have
everything they can. And a marketing perspective is slightly different
than that.

The second perspective is that I\'ve heard \-- I was here this morning
and was privileged to hear many of the comments and questions. And the
word keeps coming up, American people, consumers, patients. Marketing
people don\'t think that way. They think in terms of segments of people.
That there is no American person. There is no patient. There is no
people. We are \-- we\'re all unlike each other, but that\'s not very
helpful either. What\'s helpful is to find what\'s common to create a
segment of people who share something in common that we can then appeal
to them. But the notion that a single message or a single program is
going to work for even most Americans is really not part of the way we
think about things.

Thirdly, this has been the most difficult idea to get across to my
public health colleagues, is that marketing is continuous. If one were
to ask Coca-Cola, when are you going to stop marketing, they would not
think we were very sensible. Marketing is a continual process for two
reasons. People change, new people come into the marketplace, and there
is competition. There is also new people who come in with new ideas to
satisfy the same needs that we want to satisfy.

So thinking of marketing as a continuous process of learning from
consumers as they change is a very important part of the way we think.

On the fourth page, I just wanted to use this example, which I\'m sure
many of you know about. I\'ll mention it very briefly, I suspect all of
you know about the Got Milk campaign. It\'s one of the most recognized
and most well loved American advertising campaigns in history. It
produced enormous awareness, and zero sales of milk. Zero sales of milk.

Milk sales began to change when the milk industry changed the milk. They
packaged it in smaller containers, they made it colorful, they began to
compete in a marketplace in which beverages were changing a great deal
of time. And they recognized that women were not the people buying milk
anymore, that lots of kids and men were buying milk.

And that \-- this is such a critical lesson. That good advertising is
simply not going to fix a bad product.

I was asked if there are lessons from anti-smoking and seatbelt
programs. I think there are, of course, I think there are three of them.
One is that using regulation in combination with marketing proved very
valuable in both of them. We have to remember really what drove tobacco
out. It was taxing it, it was limiting its distribution. It wasn\'t just
clever messages about how you shouldn\'t smoke. It was a series \-- and
it also took 40 years to do, and we\'ve still got 25 percent of
Americans who smoke.

It\'s also eliminating a behavior. It\'s getting rid of one. We\'re
trying to put one in place. So there is some important differences.

Seatbelts, again, that regulatory role came very, very important. I
think one of the key lessons came out of the Click It or Ticket program
in which the seatbelt seat people learned, if you\'re going to publicize
something, don\'t publicize the face going through the windshield and
scaring everybody to death. Publicize they\'re going to get a ticket
tomorrow if they do not have their seatbelt on. That immediate
consequence proved to be very helpful.

I think there are two much better examples for to you look at. One is
Energy Star which is a program the Department of Energy and EPA has put
together over the last 15 years, which has developed a very successful
public-private partnership, created an nationally recognized brand, and
begun to have some real impact on energy savings in homes and
appliances.

And the other is probably one you didn\'t think about, but I think it\'s
interesting to look at the history of Diners Club, and credit cards.
Credit cards are not very old. They began in 1950, the first one was
issued by Diners Club. It was to a very small elite group of people,
there were very few restaurants you could use it in. It was not launched
as a big thing, everybody needs a credit card kind of thing. It grew
very small until there was a case of Citibank versus the U.S. government
that came to the Supreme Court. The Supreme Court decided that credit
card companies could actually charge any percentage they want on a
credit card, at which point releasing that regulatory on profits
increased a huge industry. And we now have credit cards almost
everyplace in our life. They\'re tailored to different kinds of
purposes.

And again, it\'s that relationship between the role of government to
regulate, both in a positive and an opening way, that seems to move
things along.

Page six, I wanted to just mention that marketing is also about
imagination. It\'s about imagining that the world is really going to be
different tomorrow. Nike has developed a shoe which has an implant in it
that speaks to your I-pod and gives you advice about your status as a
runner, what you should be doing. It\'s not on the market yet, it
probably will be in a year. And who could have thought that, you know,
five years ago.

So technology is always going to present us with new opportunities to do
terribly imaginative things.

Page seven, I just wanted to reiterate what I\'m sure all of you know,
that one of the exciting things to me about this from a marketing
perspective is you have so many different ways of going. There are so
many opportunities for growing over time. The online process seems very
practical and reasonable in a relationship between a patient and a
doctor. There may be some things you could do to get patients just
critical narrow information through a kind of rewritable health card.
Hand-held stuff with kids now, I mean, they get all this stuff in their
hand, and in five years who knows what they\'ll be doing. So this isn\'t
a sort of limited product. You have tremendous opportunity to think
creatively.

Some things that occurred to me, on page eight, I certainly wanted to
stress the point that Dr. Tang made from a marketing perspective. I
totally agree that EMRs and PHRs need to go hand in hand. If one \-- at
least the PHRs get very much ahead of the EMRs there could probably be a
marketing problem.

But looking also at the ways this can not only solve health information,
but looking at ways it might solve other parts of the health system\'s
problems, like costs.

Page nine. Just wanted, you know, to mention that this beginning small
opportunity may be something to think about. Let people learn to love
it, rather than trying to make everybody love it at once. Diffusion of
innovations is well understood now, and it doesn\'t start with a big
national campaign saying everybody ought to have a PHR, and why don\'t
you, our government ought to give it to them, and we should be mad about
it. It just \-- it just may not work in a way.

An opportunity on page 10 is maybe to start with a high profile disease,
begin to show with that disease on a large scale it works. Page eleven
talks about it being the way credit cards started, as a luxury thing,
maybe pick West Palm Beach and three pharmacies there and the richest
old people in the world will get to just buy this wonderful card and
everybody wants one. You remember shopping bags. Everybody has a
shopping bag now, right? Well, the first people that had them were
generally those elite stores, and nobody really cared about the product,
they just wanted the bag to say I shop at \-- whatever it was.

That kind of stuff is a useful idea. It\'s not one of my favorite ones,
to be perfectly honest, because I think one of the critical issues we
have to face is disparities in health and make sure people who are not
the most affluent also have some immediate opportunities to use this.

Someone asked what the next logical steps were to consider, and the kind
of work that Dr. Tang expressed this morning to the degree I understand
it is something we call prototyping. It\'s a process of taking all what
you know now and begin to make physical products or applications out of
it, in different settings. He described one in a particular setting. But
begin to prototype these things, and begin to try them out. That idea of
you need to use it in order to understand it may be very, very important
with this particular technology.

In terms of interesting the private sector, I\'m amazed the private
sector isn\'t more interested. I\'m not quite sure why, I suspect that
they\'ve been scared off by the concerns about confidentiality, and the
government regulating them too much, and they\'re not sure they can make
a buck. If you see a role for the private sector, begin to think about
it from their perspective. They will also be an audience as well, what
do they need to make this viable. The only advantage in involving
private sector, is you don\'t have to pay for it. And as long as you can
regulate it, to make sure it\'s meeting a health need, they provide a
great advantage to you.

Ranking priorities. There was some question this morning, I\'m going to
say something now that I hope doesn\'t seem impolite, but from a
marketing perspective we wouldn\'t think of a group of experts ranking
consumers priorities. Even if you had a lot of research about the
American people, because we don\'t think people think that way. We think
they think in terms of segments. And consumers ought to be able to rank
their own priorities, given a particular set of limitations and who they
are.

There was a question about health literacy. I was fortunate to be on the
Institute of Medicine\'s panel on health literacy which wrote the book
that we came out with. Health literacy will be a problem. Or anything
written in America. There\'s now no question about that. Anything
that\'s written is going to be a health literacy issue. At least 90
million Americans after great deal of difficulty in dealing with what we
give them in health. Even when we don\'t talk health-ese. I\'ll let my
two panelists deal in depth about that, but I just will say from a
marketing perspective it would be extremely important to deal with the
health literacy of these patient segments as a priority in creating
products and services that work for them.

Finally, let me say I think from our experience it is better to think of
evolution, and not immaculate conception. Rather than experts designing
the perfect system for America that\'s going to work for everybody under
every circumstances, that\'s not going to have a single problem, you\'ll
never do it. And when you do it, the world will have changed, so it
doesn\'t matter what you designed.

But begin to get it in serious situations, where people can evaluate it,
can look at it, can begin to use it. Let it begin to grow, small,
evolutionary, rather than sort of top-down approach.

I wanted to thank you. I think EHRs are an absolutely terrific idea, and
I just wanted to say I would like mine to help me lose weight, be in
brushed aluminum with black trim.

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

Thank you very much. We\'ll make sure to put that down, brushed
aluminum.

Next we\'ll next hear from Dr. Cynthia Bauer, senior health
communication and health advisor for HHS.

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

Thank you very much for invite me here today. I\'m going to be speaking
to you about the fourth question that you posed to the panel on health
literacy. And the title of my presentation is health literacy as a
factor in the adoption and use of personal health records.

I am speaking to you as the chair of the department\'s work group on
health literacy, and I want to provide you with some examples of the
many different activities we\'re already working on here within HHS, and
to encourage the work group to draw on all the health literacy expertise
that exists in all of the HHS agencies. There\'s quite extensive work
going on in all the agencies. Most of the agencies have their own health
literacy work groups, they\'re looking at health literacy issues through
the lens of their agency\'s missions, the populations they serve, the
programs that they run. And again, I would just encourage you to draw on
that expertise. And we\'re always happy to connect you with nonfederal
health literacy experts, as well.

So what is health literacy? The definition of health literacy that we
use comes from a National Library of Medicine bibliography that was then
adopted by Healthy People 2010, and the Institute of Medicine Committee
on Health Literacy which Dr. Smith just referenced.

The definition is health literacy is the degree to which individuals
have the capacity to obtain, process, and understand basic health
information and services needed to make appropriate health decisions.

And the four key concepts within that definition are: Obtain, process,
understand, and decide. And on the work that we do, those four pieces
are always linked together. So it\'s not just enough to be the providers
of information ourselves, but people have to be able to find that
information on their own. The obtaining part is extremely important,
because if people don\'t have strong health information skills, it\'s
very difficult for them to get to the information that we\'re putting
out there.

And then the deciding piece is important, because we have to accept that
sometimes if people go through this process of obtaining, and
understanding this information, they may make decisions we don\'t like.
But those decisions are still an important part of the learning process
that we need to recognize.

I\'d also like to point out here that the term individuals is used, and
that\'s been problematic for many people. And Bill certainly has a lot
to say about that as a member of the IOM. I know they\'ve struggled a
lot with that.

Individuals here doesn\'t just refer to a person off the street or
consumers or patients, or whichever term that you like. It also includes
health professionals, policymakers, it includes anyone who has to deal
with health information. And the reason that health professionals can
also have limited health literacy is because they\'re also in the
position of having to obtain, process, understand, and make decisions.
And then often turn around and do that process in an interaction with
someone else, as we heard this morning.

So I don\'t want you to think that I\'m just talking about a problem
here that only pertains to members of the general public. It really is a
very broad spectrum phenomenon. The reason \-- or today I\'m going to be
presenting you data from a study that was just released about 10 days
ago that do focus on the general public. But that\'s mainly because we
haven\'t figured out good organizational and professional metrics, to
figure out how to measure health literacy in these other contexts that I
talked about.

So the next page briefly gives you a sense of what is the scope of
health literacy. As I indicated, it\'s a combination of individual and
systemic factors. So again, it doesn\'t just pertain to members of the
general public, but again, it\'s in this dynamic of individuals in
interaction with systems.

So what are we looking at here? We\'re looking at the communication
skills of both lay and professionals. We\'re looking at the knowledge of
lay persons and professionals. We\'re looking at the cultural context in
which people operate. And again, this can be the culture of medicine,
this can be the culture of policymaking, there\'s many different ways to
understand culture as a system of practices, and rituals, and language,
that operate in terms of understanding health information.

The fourth element here is this idea of demands, an idea that\'s been
very well developed by one of our colleagues, Dr. Rema Rudd at the
Harvard School of Public Health. She has really been the lead in helping
people understand the nature of the demands that systems place on
individuals. So while we talk about the capacities of individuals, those
capacities then come into interaction with systems in particular ways.
Which either facilitates the use of those capacities or inhibit the use
of those capacities.

Finally, the demands of the situation and context. What do we mean about
that? We mean is it\'s quite different for someone to think about
walking into their neighborhood pharmacy that they maybe walk into on a
weekly basis and buying an OTC medication they\'ve probably bought 5, 10
or 20 times in their lives. Versus being in a physician\'s office and
receiving bad news they may hear for the first time, and being told
they\'ve got to completely change their life as a result of this
information they\'re hearing. All of that impacts on someone\'s health
literacy.

Next page. Why is health literacy important? It\'s important for many of
the reasons that this work group has already talked about. I won\'t go
into a lengthy description of all these things, because you can read
them off of the slide. But again, it goes to people\'s ability to
navigate a system, to know where to go for information, to engage in
this personal health management, to do all the things that this work
group is interested in. And there is research that indicates that health
literacy does have impact on health outcomes, health care costs, and
quality of care, and there\'s a sample of citations provided at the
bottom of your handout.

What I\'d like to turn to now is brand new data from the Department of
Education that was just released about 10 days ago. This is from the
first ever study of health literacy skills in the U.S. adult population.
It was a nationally representative sample of approximately 19,000
adults. The health literacy component was imbedded within a larger
literacy study. So the overall study was called the National Assessment
of Adult Literacy. There was a health literacy component in that study.
HHS was a partner with the Department of Education on developing this,
and we did this for the measurement of healthy people objective 11-2,
and we\'re reporting out that data.

The health literacy component assessed the ability of individuals to use
and understand what are called prose, document and quantitative health
information. I won\'t go into a long discussion of what each of those
different types of information are, I\'ll refer you to the study itself.
But basically, they represent different kinds of information. A prose
document is something that\'s narrative, it\'s textual, it\'s got \--
you continuously read through it. A document is something that may be
bulleted information, it may be a form, it may be something that\'s not
written in continuous text.

And quantitative information was based on people\'s ability to
understand numbers, to do different kinds of calculations, so there was
a sort of numeracy literacy imbedded in the study as well. And all of
the health information items on this study represented those three
different types of literacy.

So the next page talks a little bit about the performance levels, then,
were used to assess \-- or to categorize the results coming out of this
study. And there were four different levels: Proficient, intermediate,
basic, and below basic. This was a study conducted in English. Persons
who spoke primarily or exclusively Spanish were put in a separate
category and given an alternative assessment, so there is limited
information of people who do speak Spanish. But this is a study of
English language literacy and health literacy.

The study was also able to estimate approximately how many persons are
non-literate in English. And so those results are not included in that
study, but there is an estimate of the size of that population.

So before I actually get into talking about the results, I just wanted
to make a comment about what it means to do this kind of study. It\'s
very easy to conclude that what we\'re talking about here is essentially
a deficit model. What people lack. And I want to change the frame, here,
before we start talking about the data. We\'re not talking about all the
things that people don\'t have. What we want to talk about is where
people are at, and what they could do with the systems that we\'re
talking about designing.

So I want to reorient you before you even hear the data, so you don\'t
start thinking about those dumb old people who can\'t do anything. It\'s
very important that we get out of this mindset that all we have to do is
dumb down the information that we\'re developing, and everything will be
fine. Because that\'s not where we\'re at.

So I just wanted to put that out there up front, before you hear the
data.

So if you\'d turn to the next page, I included an example that was
presented by Dr. Whitehurst from the Department of Education last week
at a workshop held by the Surgeon General on health literacy. And this
example was a standard immunization schedule for children. It\'s one
that probably all of us have seen multiple times in our lives, if you
have children you have to wrestle with it every year before school
starts and figure out if you\'re in compliance or not.

And 58 percent of adults in this study were able to correctly answer a
question about the number of vaccinations a seven-year-old should
receive. And what I wanted to show you here is the range of correct
answers on this. So while 58 percent of all adults answered correctly,
you can see that only five percent of adults with below basic skills
could answer correctly, whereas 100 percent of adults with proficient
skills could answer correctly.

And to Bill\'s point about what we\'re really dealing with here are
segments, I think this is a very nice illustration of the kind of
segments that we need to start thinking about from a health literacy
perspective.

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

Is that responding to information given to them, and then answering
questions?

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

Yes, they\'re given what\'s called a stimulus material, so they\'re
actually given the vaccination chart. And then they have two or three
questions that go along with that. So one of the questions was how many
vaccinations should a seven-year-old receive, and so then they have to
use that. That would be an example of a document test. So then they
would have to be able to locate that information on that chart to be
able to answer the question.

So next page shows you the overall results. The first bar, there, on the
chart shows you the overall health literacy scores. So 14 percent of the
study sample falls into below basic health literacy, which translates
into 30 million persons. 22 percent have basic health literacy skills,
which is about 47 million persons. 53 percent have intermediate, which
is about 114 million persons. 12 percent of the population have
proficient skills, which is about 25 million persons. And then as I
indicated, non-English speakers were not eligible to participate in the
study, but overall, for the whole study, about five percent of the
population or 11 million persons are not literate in English. That
doesn\'t mean they\'re not literate in another language, it means
they\'re not literate in English, and that\'s an important distinction.

This chart also allows you then to compare how health literacy skills
compare to prose, document, and quantitative literacy because those were
considered individual scales, and so you can see that there is a range
in terms of people\'s ability to handle different kinds of information.
So there are more people in below basic for quantitative information,
than in either prose or documents.

Overall, who is most likely to have the lowest health literacy skills in
the population. Racial and ethnic minorities except Asian and Pacific
Islanders. Persons who speak languages other than English before
starting school. Persons 65 and older. Persons who did not complete high
school. Persons living below the poverty level. Persons who do not use
the internet for health information. And finally there should be another
bullet on there which I forgot to include, but people who rate their
health as fair or poor. Because HHS included the standard question of
having people self-rate their health. And so persons who rated their
health as either fair or poor, were also more likely to be in the lowest
literacy categories.

Let\'s take a closer look at people in the below basic category. Those
are 30 million adults, that\'s the next slide, 30 million adults are in
the below basic health literacy category. Where do they get their
information from? 37 percent or 11 million get no health information
from newspapers. 41 percent or 12 million, no information from
magazines. 41 percent or 12 million, no information from books or
brochures. And 80 percent or 24 million, no information from the
internet.

That doesn\'t mean, however, that they don\'t get health information
from other sources. They do prefer mass media or interpersonal sources
of health information.

So what is the relevance of these health literacy data for personal
health records? First of all, I think we need to recognize that adults
with limited literacy \-- health literacy skills are not accustomed to
using internet as a health resource. This doesn\'t mean they couldn\'t
become accustomed to, but it means today it\'s not a regular feature of
their lives. They prefer, as I said, mass media or interpersonal sources
of health information. So again, they\'re not completely isolated from
health information, they prefer different channels than people with
other literacy skill profiles.

They\'ll be unlikely, however, to handle many of the multiple and
complex tasks in personal health records. And again, that goes to the
way that these different skills, literacy skills, were defined in this
study. It talks about people\'s ability to perform these different tasks
in different situations. And on the next slide I\'ll go into what some
of these PHR tasks are. Again, the relevance of this is that anyone in
this category is likely to have poor or fair health, and are likely to
have different health information needs than other segments of the
population.

So what are some examples of personal health record tasks that we could
think of in relation to the health literacy data? First of all, we have
to think what do these data help us understand about people\'s ability
to navigate websites and other appliances? There have been some
small-scale studies that indicate that persons with limited literacy
skills often have navigation problems on websites. There\'s a conceptual
disconnect between what\'s going on on a website, and their ability to
move through that information, to follow links, to process what comes up
in a pop-up window. All of these different things that many people take
for granted in navigating a website, those are conceptually difficult
for people with limited literacy skills, according to some preliminary
research.

We also know from these data, or can intuit, that seeking out health
information is not going to be one of their primary occupations on a
daily basis. We can surmise that entering data could be a conceptually
difficult task, again, because of navigation issues on a website. Or
again, even understanding what kind of information is required in a
particular situation.

We could imagine that within a PHR people might be asked to compare two
or more pieces of information or to read charts and graphs or to
initiate writing messages, as we saw earlier this morning. Someone who
struggles with basic literacy would have a hard time probably doing most
of those tasks. And analyzing reports, reading textual information.

So again, this doesn\'t mean that people with limited health literacy
skills can\'t do any of these things, they\'re not things that are
probably a regular feature of their everyday life. And they may, again,
require particular strategies, particular types of products. I mean, all
the things that Bill Smith spoke so eloquently about. You need to think
about these kinds of tasks in relation to the capacities of this
particular segment, and think about the policy and design issues in
relation to that.

I just want to conclude with a couple of findings from a recent report
that our office, the office of disease prevention and health promotion,
published. Looking broadly at consumer E health tools. For us, personal
health records were a type of consumer E health tool. The blue executive
summary that was distributed to everyone highlights the main points. I
also have a couple of examples of the full report. I know people don\'t
like to carry big reports anymore, so I didn\'t bring a lot of them, but
it is very extensive, and includes a very large literature review that
looks at all of the peer review literature on different types of
consumer E health tools. And there is an evidence table at the back of
the report.

So what are the things, briefly, that we found in doing this report?
First of all, extensive consumer research is essential, and it\'s
preferable if it uses participatory research design, because that is the
main way to get at all of the diversity and perspectives and experiences
that exist in the U.S. population. I think it just reinforces Bill\'s
point about segmentation and really understanding your market before you
get to the product development phase.

We used a heuristic of access, availability, appropriateness,
acceptability, and applicability to do this review of E health tools,
both in the research and commercial marketplaces, and we found there\'s
a big gap between what\'s available in the research labs and what\'s
commercially available to most consumers. So again, it\'s difficult to
generalize to the population, because most of the tools have only been
used in these very tightly controlled research studies.

Evaluation and dissemination must be very tightly connected to the
design process, so again you know what you\'re going to do with this
tool and who is going to use it in the end.

There\'s a lot of existing community infrastructure that can help inform
the policymaking, design, and dissemination process, and help us get
these tools much more closely aligned to members of the intended user
groups.

And finally, national leadership and vision can help ensure agreement on
basic principles that go beyond privacy. And our report did include \--
did propose a vision statement to begin to articulate that framework for
national leadership. Thank you very much.

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

Thank you, that\'s very helpful, and there are copies of the executive
summary here, or the brief report, at everyone\'s desk, and the larger
ones are available here in the room.

Next, Dr. Michael Leu, who is a Robert Wood Johnson clinical scholar at
Yale, and he\'s going to talk about health literacy considerations for
EHR systems.

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

Good afternoon to Ms. McGrath and Dr. Robertson and members of the work
group, and other participants. My name is Mike Leu, let me tell you a
little about myself to begin with. I spent eight years in the software
industry developing usable products that were culturally \-- that took
into consideration cultural and linguistic appropriateness. Then I went
to medical school where I had a chance to practice in a wide variety of
practice settings, which included numerous roles in underserved clinics.

I\'m currently in the Robert Wood Johnson Clinical Scholars providing
training in health services research, we\'ve also gotten some exposure
to community based participatory research. My own area of interest is in
the intersection between technology and medicine, and one of my major
research areas is in how to bring these health IT tools to patients in
rural and underserved communities so they can benefit.

The area of health literacy is an area of great interest to me, and I\'m
only going to testify on that issue.

My testimony will focus on two things. I\'m first going to describe how
health literacy applies to electronic health tools such as personal
health records, and then I will describe some promising strategies for
laying groundwork for future efforts taking health literacy into
account. My oral testimony is actually going to expand upon the written
testimony that you\'ve received already.

So over the summer, I was researching health literacy considerations for
these types of electronic tools, and not surprisingly, I found there was
actually not a tremendous amount written about this intersection. The
field of health literacy is relatively new, although there is some
fantastic data that was just presented, and as you know, personal health
record systems are also relatively new. Different personal health record
systems have different feature sets, and it\'s unclear which features
are the most important when you\'re trying to improve health.

In order to be able to speak meaningfully about electronic health tools
that are incorporated into these systems, I created a model for how
patients decide to take actions related to their health. So you can
see \-- I don\'t know if the slides are \-- the next slide. So this
model is shown in figure one of the written testimony and slide three of
the oral testimony. So this health consumer empowerment model is loosely
based on several theories, which include social cognitive theory, health
literacy theory, and theories about disparities and the chronic care
model.

This model suggests that health consumers perform a few tasks, usually
subconsciously, prior to taking action. Factors that are involved in
their decision to take action include their past experiences, their
ability to model the behavior of others, which means they can watch
somebody else taking the action that they\'re trying to take to sort of
see how it might affect them. Self-utilization, and knowledge
acquisition processes like going out to the internet to look up their
diagnoses or start thinking about how it is that the instructions that
they\'ve given might actually apply to them personally.

Persuasion from others so in this case this might include from members
of the health care system such as clinicians. Ongoing approaching and
performance feedback measures, sort of like some of the things we had
demonstrated this morning with the nice graphing. And their physical and
emotional state at the time. As mentioned, patients that have just
received a new diagnosis are not always in a state where they can take
action.

So I\'ve created this model which actually predicts there are certain
types of electronic health tool features which will help patients to
take action. For example, with regards to social networking tools, they
can actually connect people with models that might have common interests
and problems, such as with other patients of rare diseases, and they can
form then online communities that potentially cross significant
distance, providing both modeling support and social support.

Tools can be used that use multimedia, so sort of like the next step for
this evaluation of health literacy, which is more focused on paper-based
models, we can consider literacies which are more media based and
technology based, like visual media, animations, interactive tutorials
and photographic images, might be some ways that information can be
presented so that patients with traditionally low health literacy can
actually better understand their health issues.

Other forms of tools that might be helpful might be reminders of
appointments or reminders to take medications, and patient
self-monitoring tools which may provide an ongoing performance feedback
and increase feelings of patient\'s own self-efficacy.

So the role of health literacy in this model is that it colors the
patient\'s interactions with factors that are external to themselves. So
you see that there\'s a line there between sort of like the things that
electronic health tools might be able to modify with regards to the
interaction between patients and the health care system. So
interventions which address health literacy such as health education may
make these patient focused interventions more successful. Some ways
people do that include tailoring information to the patient, so using
their name, and using primaries that are specific to the patient
themselves, and communicating in ways that respect the cultural
languages and other personal characteristics of the patient.

These communications are a key to successful health information \--
intervention, and will also be a key to successful dissemination of
these tools.

You can sort of see in this picture there\'s actually an area that I\'ve
sort of blocked out, I\'m going to blow that up in the next slide.
Health literacy has been studied primarily in communications between the
health care system and the patient, usually in the clinician and patient
encounters that occur during the scope of a clinic visit.

You can sort of see that health literacy is sort of the barrier in this
kind of communication, where clinicians may be speaking medically, their
lay language, and patients may be speaking in \-- and interpreting
things with respect to their own linguistic and cultural capabilities.
And sometimes intermediaries such as translators or other cultural
brokers are used to facilitate this communication process.

And the process of health literacy is pretty interesting because since
it\'s a barrier it can actually be approached from two different
directions. You can try to modify patient factors by educating patients
and making them more proactive, or you can modify clinician and health
system factors, where you can try to make it so the information you\'re
presenting is more appropriate.

So the next slide, in comparison, you can see that electronic health
tools serves sort of the function of the intermediary in this model. So
electronic health tools can interface directly with the patients,
usually at the direction of clinicians, and they can provide online
materials or other functionalities. And I would say that electronic
health literacy is really looking at the barrier between these
electronic tools and the patients, where you can modify the design of
the electronic tools to make contents more acceptable to the patients,
and perhaps educate patients in ways that they can interface more
appropriately for the online tools.

So when looking at these two together in your handouts, while clinicians
may need to be trained in the principles of clear health communication,
such as using lay language, slowing down, and respecting patient\'s
social and cultural sensibilities, electronic tools can actually be
designed to incorporate these considerations directly. These tools can
reinforce proactive behavior by making sure that patients have answers
for the questions, like what is my diagnosis, what do I have to do, and
why is doing this important, as you might see in AFSME 3 or
(indiscernible) health care.

Just as physicians are advised to incorporate teach-back principles to
patients, these tools can actually evaluate the patient comprehension
either on the spot or over time to sort of see how are they tracking in
their ability to utilize the information that is being presented.

Electronic tools can educate patients and improve their ability to learn
about and manage their health problems. And these tools can be designed
to use multiple modes of communication, like I was mentioning,
multimedia, animations, and even interactive games have been shown to
improve these types of interactions. They may also contain adaptations,
some of which you can see in section 508 considerations, such as the
ability to increase font size for patients who are older and have
disabilities.

At the same time, one of the issues with these types of electronic tools
is that there may be tools that just are sort of between electronic
health tools and the patients, where the provider is not really
involved. And this might result in a fundamental change in the way that
health care is delivered. So as these tools have the advantages that
they can be used with other people around to help, and they can be used
at the patient\'s leisure, there\'s also the advantages that information
provided through these tools can be viewed repeatedly, and they can be
shared with others.

In some cases, patients are already using these tools independently of
clinicians. For example, with online health materials and patient
self-management tools. These tools can provide virtual consultation
around the clock outside the context of the clinical encounter.

Now, as a pediatrician, there is actually a concerning issue with this,
which is that adolescents are using these electronic tools to support
behaviors related to their health that are unhealthy to them. So some of
these behaviors include cutting, substance abuse, medication abuse, and
steroid abuse, and a condition such as anorexia or bulimia. Patients can
actually get together and sort of talk about these sort of behaviors
that are actually harmful to their health. And so it will be important
to better understand how it is that tools are supporting negative health
outcomes, so we can also figure out how those things fit in with the
types of tools that we\'re developing.

So I\'m actually going to skip the slide where I talk about \-- well,
I\'ll talk about a couple of high level concepts. A couple of things
that were interesting to me from this survey were that low health
literacy actually affects all the different segments of society. So even
though certain segments of society are affected to a greater extent, you
can see in the results of the survey that even patients that have
traditional insurance and patients that are younger, also there are some
people within those categorizations that have low health literacy.

And the other thing that\'s interesting as a clinician is that there
have been studies where they have tried to identify people that have low
health literacy just by looking at them, and physicians cannot do that.
It\'s like without screening for low health literacy there\'s really no
way to know who has low health literacy and who doesn\'t.

Now I\'m going to talk about promising strategies for how electronic
health tools can help for health literacy issues. I decided that I going
to just talk about probably the three most important ones, though I did
discuss quite a few strategies with regard to how to improve consumer
experience, how to learn from currently funded electronic health tool
interventions and community interventions. So I just want to focus on
three that I think are probably most important. First of all, health
records, electronic health tools are actually very different than types
of electronic tools that are currently being developed. And I think that
we really have to understand better how that is.

You know, and I think that there\'s three sort of like high level ways
that we can do that. One is that we can figure out who are the people
that have low health literacy, and sort of figure out what are the right
measures for these electronic health tools in terms of changing patient
outcomes. The second thing we can do is we can ask who are the people
who are not participating in these types of personal health records and
electronic tool efforts, and have a good understanding who they are and
how it is we might be able to adapt these tools to better suit their
needs. The third thing is we can ask patients to help us in this process
so that we can really use their knowledge and expertise in the design
process.

So now I\'m going to go and look at those things in a little bit more
detail. So with regards to improving consumer experience, I think that
it\'s very important for us to create tools that make it easy for
patients to get started, so they won\'t start with a tool and then just
sort of abandon the tool and never come back to the tool.

One of the ways that you can do this is to include online tutorials, use
strategies that assess level of the user, and then route them to the
correct level of user interface and materials from the very beginning,
then you can sort of ramp them up as they get more familiar with the
tool. Or you can use tools that start out with a training mode. There
are a number of ways to approach this from the computer science
perspective, and I made some references to them in the footnotes.

But I think that the most important thing is when we\'re actually
looking at these tools efforts we need to have some ways to sort of
assess who are these people that we\'re trying to affect. So one
possible recommendation for this may be for HHS to support the
development of standard measures to assess health literacy, and other
types of things like technology literacy and self-efficacy, with regards
to these types of specific health care tasks that we\'re trying to
encourage through these tools. And this may be a process of guideline
creation, and electronic health assessment tool creation.

I don\'t think this is going to be too bad, because recent studies
suggested that health literacy can be screened, there\'s always one
question. You know, so for adults you can ask the question do you feel
comfortable filling out a medical form, and that correlates pretty well.
Or for children you can ask are there ten or more children\'s books in
your household, and that seems to correlate pretty well.

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

Dr. Leu, could we get you to summarize and pull it together here fairly
quickly.

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

Okay, so I think that it\'s absolutely key to involve patients in the
design, usability testing and pilot testing for these software tools.
And I have a recommendation there for how we might be able to do that,
in terms of encouraging HHS funded demonstration projects to be required
to have been developed through a patient focused design process and
community based participatory research process. And again, the footnotes
say how to do that.

And then the third and most important recommendation, as far as to learn
why these tools are not used, and so in HHS funded studies that evaluate
PHR systems and electronic tools interventions, there should be an
analysis of factors contributing to lack of patient engagement and tool
utilization including demographic information and functional assessments
like health literacy and disabilities. So thank you for this opportunity
to share my preliminary research findings, and I\'ll be happy to field
any questions from the work group.

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

Thank you very much. We\'ll have questions for the panel. Ross?

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

Maybe it\'s just an after lunch thing, but I\'m depressed.

I thank you all, first of all, this is very, very helpful. And I guess
I\'m \-- sobering, or just really puts in real black and white terms
what our challenges are in getting widespread adoption to the people who
really need it. And I think one of the statistics just about the one
that you hadn\'t put on the slide, but you added on about the level of
people who are in fair or poor health, who are in that below-basic level
is very high. Or basic to below basic, I think. Below basic. So the
people we need to help the most are the ones that are least able to
maybe avail themselves of some of these solutions. Perhaps. And this is
really where my question comes down, and it can be for all of you, maybe
Dr. Bauer for you in particular.

When I think about what technology does in a lot of different settings,
is it overcomes a lot of \-- it can make it easier to overcome certain
barriers, language barriers. For example, I know somebody who fell in
love with somebody in China and they used like an Alta Vista translator
in their e-mail. Even though they couldn\'t speak the language, now
they\'re a couple and it\'s because of that. And those are things that
can help us transcend some of those barriers.

Being able to take something that is otherwise unreadable, and put in a
different font, you know, makes it something for someone that\'s
sight-impaired to be able to interact with things.

So I really want to understand how much of this \-- how much of the
health literacy issue is really about health literacy, and not \-- and
not E health literacy, necessarily. I mean, there\'s one thing about
having computer access or comfort with web surfing and that sort of
thing, I understand that one. But can I turn this around and say if we
understand these things about our barriers to interacting with health
care in general, whether technology is involved or not, are there roles
that these technologies can play to improve that, rather than be the \--
you know, it\'s not going to help these people, because they can\'t
reach it.

Is my question clear?

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

I don\'t want to speak for Mike and Bill, but I think they might agree
with me that what we\'re talking about here is extremely conscious
design. And that means design in policy, design in products, design in
dissemination. It doesn\'t mean you can\'t do it, but you have to have
extremely high level of consciousness about what you\'re doing. Because
one of the studies that I referenced in terms of understanding people of
limited literacy skills and their navigation, also asks them at the end
of this very extensive interaction with the system, how confident do
they feel. Even though from a researchers perspective virtually
everything they had done sort of didn\'t fit, you know, what the
researchers would have liked, in terms of optimal performance.

People\'s self-efficacy was really high. They felt really positive about
it and there are some studies that show people can feel really good
about it even if their performance is quite poor on a system.

So I think it\'s not that there\'s not that opportunity there. So I hope
that\'s not the message I delivered. I tried to be very clear, there is
opportunity, but that opportunity means following what Bill had laid out
in terms of potentially understanding this as part of the segmentation
that needs to go on, and fitting it in with these other factors. Because
that\'s why I thought it was important to include not only the
definition, but our expanded scope of health literacy. Because it\'s the
context, it\'s the experience, of all those other things. That\'s why
plain language never solves your problem.

Plain language, only one very simple, easy strategy, that sort of lowers
the bar a bit, but doesn\'t allow you to take account for all those
other factors. So.

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

I\'d like to add one other thought. One of the most interesting places
to go is the DMV office in Springfield, Virginia, which is practically
all Hispanics, who can\'t speak a word of English. And they are passing
an English test which is extremely difficult. They\'re not passing it
the first time or the second, or the third, sometimes they\'re passing
it the sixth. But they\'re absolutely persistent in getting that
driver\'s license because they really want it. And they will overcome
whatever barriers the State of Virginia has put in. I failed it three
times, I have to tell you. Florida\'s is much easier.

The other example is cell phones. You can\'t find a low income person
without a cell phone. Because it solves a problem they care about.

One of the things we have to go is what problem do they care about, that
will make them want this so badly, that they will find some way to
overcome some of those obstacles.

And the other solution is to understand the obstacles for a particular
segment, and then design it, as you did, around the needs of that
segment.

Don\'t be discouraged. It is hot, and \-- afternoon. I don\'t think
anyone of us meant to discourage you. But I think there are tremendous
opportunities for this, but I think those are the two solutions.
Something people really want, and something we\'ve designed, so they can
use it as easily as possible.

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

It\'s encouraging in fact that we have you all as resources, as this
moves forward.

I don\'t want to make this \-- I want to cut this short. We do have
another panel to hear. So \-- but let\'s ask the questions that are key.
Gail?

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

I agree with you, Bill, that motivation is the primary factor here. But
I just wanted to ask one question, Cynthia, on your stats as far as 30
million persons have below basic health literacy skills, did you take
that a step further to see how many of those actually have health
problems? Because what I\'m trying to figure out is people get
information when they need it, but if somebody is sick, they\'re going
to be more motivated to find the information than they\'re not. So do
you have that broken down?

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

I don\'t think that analysis has been done. This is sort of the first
pass from the Department of Education, we\'re going back and just
looking at the data now to see what additional analysis could be done.

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

Cynthia, if I may just add quickly, Cynthia just sponsored a meeting
with the Surgeon General to answer the scientific question, what do we
know about the relationship of health literacy and health outcomes.
There\'s some good data, but it\'s very limited there\'s a consensus
there must be a logical relationship, but the path hasn\'t been exactly
established yet.

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

Charlie?

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

\-- concentrating on people with chronic conditions in a number of these
activities, are that they are motivated. And to the question you asked
earlier, people with chronic conditions don\'t have access to their own
health information as we currently sit here. And so giving them access
to information, even though we haven\'t completely solved health
literacy, still gives them a huge leg up. And we find, when we survey
our members, and do studies of people with chronic conditions, they tend
to become experts on their condition.

Now, their health literacy may not have increased dramatically, but they
become experts on that condition, and managing that condition. Having
access to their own health data will take them a long way. And I also
draw the distinction, which I think has been mentioned earlier, between
health literacy, which is your ability to take in the information, and
clear health communication our ability to communicate effectively to all
people. For this segments issue.

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

Paul, then Charlie.

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

I really enjoyed the panel, thank you very much. And I\'m optimistic, as
well. Let me test out an idea and see if I\'m going astray here.
Oftentimes you look at general knowledge and specialty knowledge, and
you think, well, you have to manage the general \-- master the general
first, then you have to work on mastering the special. I\'m almost
thinking this doesn\'t apply here. Which is very helpful. In other
words, you have a certain literacy which takes years to develop, and
then you have this special literacy about not only about health, but
your health condition. Which is what Marc just talked about. And it
actually can be a lot easier to deal with your health condition,
one-on-one.

So one of the things you mentioned, Cynthia, was this recent study, and
a look at prose, documents and quantitative, not necessarily visual, as
one opportunity to communicate knowledge and have them obtain, process,
understand and decide.

So a couple tests of that theory. The one was your immunization test.
What if the material they were given was this table that included at the
bottom, at the end of the column, by every age, how many immunizations
should you have.

It would seem to me that 100 percent would pass that, and what we\'ve
done is we\'ve just changed the presentation of knowledge and make it
accessible, and very useful.

The graph is another example. Where you don\'t have to \-- they don\'t
have to know about glycogen stores and they don\'t have to know about
adipose tissue, they just see this does something when I do this.
Without even being told, despite \-- you know, doesn\'t mean told
before, and they can get it. I think they\'re obtaining, processing,
understanding and deciding.

So the question is, isn\'t it \-- couldn\'t it be a lot easier than
going through a series of steps involving a lot of understanding, versus
connecting the dots, and that \-- is that called health literacy, in
your definition? I mean, I\'m reading the words and I think it is, but
I\'d like to test that. Is that \-- would you consider health literacy
about that person\'s context? And is that effective? Do you get credit
for that?

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

It\'s a pretty hot topic at the workshop a week ago because I would say
sort of the early stages of the health literacy work did focus on the
information design. And then again, most of the studies have basically
shown that the information that we produce as a society is completely
unusable by virtually everybody. And in this particular study, the rules
of the Department of Education study were that you couldn\'t redesign
the materials. What they wanted to do was say if this is what an average
bus schedule looks like in this country, how many people can use bus
schedules as we design them today.

If this is what a typical vaccination schedule looks like, well, who can
use it.

So you\'re right, that\'s why I said conscious, really conscious design
is potentially one of the solutions.

But there is sort of the other side of it, and it gets to this ability
to deal with novel situations. And it depends \-- are you trying to
teach people facts, and how to deal with just things in that moment, or
are you really trying to deal with skill building where people can go
into novel situations, where they then maybe don\'t have somebody sort
of hand-holding them through the process. And that\'s why I think, you
know, you need to be aware that what we\'re talking about often that
literacy skills are really foundational for moving across different
topic areas. Health literacy then is sort of this more global construct
in which literacy skills fit. There may be knowledge of different health
topics that are needed at different times in your life, but if you take
this life stage perspective, if you just teach people the facts of what
they need to know today, what happens when they start aging and they
need to know new information. Do they really have that capacity then to
move into those situations.

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

Well I think I\'m taking it one step further, and not even mastering
facts, but getting the connections. So is it sufficient that they get
the connection between however you deal with it, disseminate,
communicate, that your diet or taking pills affects this measurement of
something. Isn\'t that enough to get motivated, and have self-efficacy
in terms of self-management?

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

I think that\'s a question that\'s going to have a very complicated
answer, and I would bet we don\'t have sufficient information. I mean,
in some circumstances one would think that\'s sort of operant
conditioning.

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

But we all know we do things that we don\'t understand. I don\'t have
the faintest idea how an aspirin works, but I take it. Because I get a
response.

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

Your point, Paul, I think you\'re absolutely right, the goal here is to
improve clinical health outcomes. We certainly want to strive at
improving health literacy, and getting at the functionality of
communications. However, the primary goal is to empower the consumer so
that they can make better health decisions and achieve higher clinical
health outcomes. What you\'re describing is a situation that we can do
and we know we can do right now with technology. So from my point of
view, that\'s a very important step forward. Is it getting at the entire
picture? Maybe not, but it\'s a step in the right direction.

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

I\'d want to say one of the presenters at this workshop was a researcher
Frank Kyle who talked a lot about this issue of how much do people
really need to understand the causal relationships of things. And he
specializes in children, where people have many assumptions about what
children do and don\'t and should or shouldn\'t understand. And he
argues that really helping people understand the causal relationships is
really fundamental to the learning process, and that we sort of miss the
opportunity to help people understand causal links. And that it really
deepens their understanding.

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

We have very little time to get to the next panel, so two more
questions.

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

Mine is sort of a comment for \-- a question for us all, as we sort of
come to grips with what it is we\'re supposed to be doing as a working
group. My comment is really premised on the fact that you can actually
move from levels. So if you\'re \-- you know, have very low skills, that
there\'s some sort of intervention that might move you upstream a little
bit. So swimming upstream, I\'m left with the fact that children,
adolescents, and say young mothers, or first time mothers, might in fact
be the target populations that we ought to be trying to deal with with
some of the interventions.

So as we\'re able to influence, you know, funding or policy or
direction, should we be recommending that some of our investment, if you
will, and our efforts be focused through the Department of Education at
K through 12 education with respect to health literacy and understanding
personal health records. Should we be dealing more with demonstration
projects in pediatric offices, where the kids are the ones who are the
primary users of these personal health records. So that we\'re investing
in growing essentially a more health literate population by
intervening \-- or for many young people, their first and perhaps only
experience until they get to be 50 with the health system, is through
the birth of their children.

And should that be where from a policy point of view we should be
encouraging some prototypes, some development, some experimentation,
some understanding of that dynamic. Rather than investing at end of
life. I\'m just sort of throwing this out.

I like end of care \-- because that\'s what we do, but I\'m just sort of
thinking really maybe our investment in part or the portfolio investment
should be weighted towards the younger populations with the idea that we
influence health literacy of the population.

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

With perhaps the advantage that E literacy is going to be huge, in that
population. Or huger. Than it would be \-- in a sense children will
be \--

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

Schools are wired in the country.

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

Yeah, schools are wired. Answers to that?

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

Was that a question?

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

Well \--

**[\>\> CHARLES:]{.underline}**

\-- direction for what it is we should be recommending, I don\'t know.

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

I think, you know, from a marketing perspective that would be an
excellent criteria to take into consideration. Where can we get the
biggest bang for the investment that we make now, and it could very well
be in that population. So that is the kind of thinking we do.

The other thing to remember, though, instead of making them all health
literate, we can do some things that make it easier for them to deal
with the world as they are. I don\'t know how many of you know about the
target new pillbox, but it\'s the best thing I\'ve seen to help
Americans get health literate. Somebody finally decided the pillbox,
this little round thing we can\'t read, in circles, needs to be
redesigned. And they got a designer to do it, you know, a marketer or a
doc to do it.

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

Or a committee.

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

Or a committee. They actually did get a committee. But they had
designers to do it, and you should look at it because it\'s an amazing
example of what design can do to solve that problem for all of us.

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

I\'d like to add a comment on that, also. One of the other things I
research is like how adolescents use technology. When I was conducting a
focus group there was something that one of my participants said that I
think ties in directly with what you\'re saying. He says that all the
games and all the online stuffs they he does online really is preparing
him for like the new world. In a sense, what you\'re talking about.
He\'s learning how to use computers and models effectively to do things
that affect his life. I think, you know, focusing on a group where this
is already sort of a part of how they\'re growing up, might make a lot
of sense in terms of moving forward.

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

We think this isn\'t just an excuse to do more gaming, huh?

Any other questions? Okay.

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

I\'m Jodi Daniel, I apologize for walking in a bit late to this panel.
My question is, Cynthia, in response to Ross\'s comment you were saying
you shouldn\'t be pessimistic, this can be done, it just requires
conscious design. And I also heard the comments about, well, health
literacy isn\'t just about literacy, there\'s also cultural context and
context and, you know, what is the context of the person that\'s
receiving the information and the like. In thinking about
recommendations from this group, my question is given that there are so
many factors that go into health literacy, what are steps that can be
taken for conscious design to address the variety of different factors
that are going into low health literacy rates. Where are places that you
could start to attack the issues, understanding that people are coming
at this from very different places and having very different factors
that are affecting their health literacy rates.

\>\> I think Bill will also agree with me on this but that\'s an
empirical question. And it is hard for me to sit here in my role and
tell, sort of listen. I can tell you what they are but they fit a
profile of somebody like me, not all of the of other segments that, you
know, PHRs are essentially or eventually supposed to serve. So I think
Mike has suggestions in his paper how to take some of those steps. I
made the same point about how, you know, a lot of consumer research, you
know, using as many participatory approaches as possible is also a thing
‑‑ presentation is that there is a lot of upfront consumer research that
is required before you can sort of take some of those initial design
steps.

> I guess I take a little issue with the way Mark had phrased that. He
> said, you know, what we are all after is optimal clinical outcomes. I
> guess from a marketing communication perspective, I don\'t think
> that\'s what most people walk into doctor\'s offices and say, please
> give me optimal clinical outcomes today. They say I want to feel
> better. Make this go away. That\'s really taking their perspective on
> the problem, and I think we ‑‑ so the first step is being willing to
> lay aside our professional biases about these things and taking the
> consumer research enterprise seriously in the process so it informs
> everything that we do. Scientific more precise.

\>\> Thank you very much. We\'re going to have to cut this off, but we
could obviously ask you questions all afternoon. So like to thank this
panel very much for your input and responses and move to panel two.

> And here we will talk about public health, personal health record
> incentive policy levers. And we will begin with Mary Ellen Zipper who
> is the director for relations for cap med.

\>\> Mary Ellen Zipper. I\'m with Cap Med. Division technology, and we
are a personal health records vendor and I\'m the director of client
relations. Just by way of background, my background is in nursing so I
practiced in the nursing field for about 15 years, in the hospital
setting as well as ambulatory care before moving on to electronic
medical records. And I worked as a project manager for several years on
that side developing and implementing electronic medical records, and
more recently moved on to personal health records and joined Cap Med.
And so it is a natural fit for me, on the nursing side, to be back and
advocating for patients and what\'s good for patients.

> And I would like to thank the worker for inviting Cap Med and myself
> to be here.
>
> I\'m going to go ahead and read from my testimony that was submitted.
> Cap Med was founded in 1996. We are a leader on personal health
> records. We offer a PHR solution that\'s a hybrid application. We have
> got three applications available. One that is web‑based personal
> health record. One that is desktop based and then one that is resident
> on a USB drive. And to date we have distributed over half a million
> personal health records. Our focus is to provide PHR solutions that
> are both accessible and usable. A one size fits all approach to
> providing a PHR we believe does not work. Our research has shown that
> consumers have a preference in the form factor in the PHR and that
> some of the trust that they build on that is based on the entity
> that\'s providing the PHR. We found a direct correlation in the
> consumer\'s willingness to engage in online applications when they are
> offered or sponsored from a trusted entity such as a physician, a
> hospital or a pharmacist.
>
> With regard to use ability, both the user interface and the PHR
> applications and services must be addressed. Research continues to
> support that consumers are much more interested in engaging with a PHR
> application that has the capability of being populated electronically.
> We believe the future of the PHR is patient centric model where the
> consumer is at the center of the integrated medical information
> network. The testimony I\'m here to share with you today will address
> our position on incentives and interoperability to support widespread
> adoption of personal health records.
>
> Incentives are frequently discussed with regard to EMR adoption
> however incentives are critical to the adaption of personal health
> records by consumers. Their exposure to the PHR market we have seen
> various incentives used to attempt to influence consumer adoption of
> PHRs. They range from one time financial rewards for initial
> completion of health risk assessments to ongoing company wellness
> programs that encourage PHRs to track various health programs and
> initiatives.
>
> What has been demonstrated in the industry, particularly by PHRs that
> have been distributed by employers, is that consumers can be
> incentivized to take a first action such as completing the HRA but
> rarely make a return visit to the PHR application for ongoing use. The
> most common incentives for completing an HRA are financial either in
> terms of direct cash payment or reduction in health premiums. It\'s
> been demonstrated that one time financial rewards have been effective
> for an initial exposure to a PHR but have not been effective in
> engaging consumers to continue to utilize the applications and
> services.
>
> For a PHR to be truly effective the consumer must have regular
> interaction with the PHR. We believe that incentives should be tiered
> so that consumers are encouraged to have ongoing interaction with
> their PHR and are rewarded accordingly. For example a consumer that
> completed the HRA may receive one point another for completing the HRA
> six months later and another one for enrolling in one of the health
> management programs to qualify for the incentives. It is our belief
> these incentives would need to occur regularly per calendar year.
> There is an opportunity for policy makers to ensure incentives are in
> place for consumers. Currently the onus is on the private industry to
> both cover the costs for employing a PHR and for any incentives for
> PHR usage that are extended to the consumer. As there is a director
> correlation between the level of involvement a patient has in their
> own care management and improved outcomes, there is a policy level
> opportunity to mandate the reduction and health insurance premiums for
> consumers that demonstrate active involvement in managing their own
> health. This can be equated to a reduction in health care premiums for
> consumers to use seatbelts, for example.
>
> With regard to clinicians a PHR director supports paid for performance
> initiatives, engaging consumers and maintenance and follow‑up care
> through their PHR with physical emissions and being more compliant
> with required care management protocols. Clinicians can also find
> efficiencies in PHRs when they complement and simplify current
> processes in the clinician\'s office such as simplifying patient
> registration.
>
> However despite the benefits and proposed incentives for ongoing PHR
> usage, believe that widespread consumer adoption of PHRs will follow
> the availability of standardized electronic information. The overall
> adoption of PHRs is going to be driven by the availability of clinical
> information in an electronic form that is easily imported and
> exported. In order to have clinical information in an electronic form,
> a physician must be using electronic medical records to manage his
> patients, and herein lies the challenge. At this point in time
> approximately 20% of physicians are utilizing EMRs in their practice
> of medicine. Based on this statistic there are 80% of physicians today
> that cannot help their patients easily populate and maintain a
> comprehensive PHR.
>
> We have seen that a clinician\'s adoption of support for PHRs is
> usually dependent on whether they are using an EMR system. If they are
> using an EMR, it is easy to import data to and export data from a PHR.
> They are big supporters of using PHRs. But those clinicians not using
> an EMR cannot not easily help patients maintain their PMR and
> therefore less likely to support the PHR. We believe any action the
> government could take that would accelerate the adoption of EMRs by
> clinicians would subsequently the adoption of PHRs by individuals. The
> increased adoption of EMRs and PHRs should give us the ability to
> improve the quality of health care services we deliver in a much more
> efficient manner.
>
> Regulations that would drive finalized interoperability standards
> between the various clinical information systems will facilitate
> adoption of EMRs and subsequent adoption of PHRs. As interoperability
> standards are finalized, the government should require that all EMR
> systems comply with and support the established standards. Likewise
> the government should require that any PHR system that chooses to
> accept or transmit electronic data between systems also comply with
> and support the standard established standards.
>
> A comprehensive PHR should be able to import data from EMRs that are
> used by a person\'s physician, aggregate the information in an
> organized patient centric fashion and export back to an EMR
> electronically. Once established, this flow of information will allow
> individual health care providers to always have a complete picture of
> the person\'s health they are diagnosing and treating an illness,
> including medical records from physician\'s offices that are still
> paper based, over‑the‑counter medications, home monitoring results,
> alternative treatments and adherence to medication therapies and
> treatment plans.
>
> We believe that in addition to EMR systems there are other valid
> sources of medical data that could be used to populate PHR with
> medical information. These include electronic accessed to medication
> history, through pharmacy systems, insurance claims data and lab and
> imaging systems. Some of this data including insurance claims data is
> already available for PHR use and serves as a good starting point for
> interoperability.
>
> There is several pharmacy E‑prescribing networks that link electronic
> communications between pharmacies and physicians and currently process
> electronic prescription data for a large majority of the pharmacies
> and pharmacy benefits managers.
>
> It is only natural to extend this network to the patient allowing
> access to their prescription history and hence supporting the PHR user
> ability to manage their sometimes complex medication regime.
>
> A final electronic source of medical data is home monitoring devices
> such as glucose meters, blood pressure monitors, cholesterol monitors
> and weight scales. To date there are neither data standards nor
> inoperability standards that extend to these devices. Each device
> manufacturer maintains proprietary interfaces between their devices
> and the computer, which hampers the PHR user from being able to access
> this data and included in the PHR system. Either the patient must hand
> their readings from their devices into the PHR or the PHR vendor must
> develop a custom interface to each individual device. We recommend
> that the government extend requirements for data and interface
> standards to these home monitoring devices to facilitate the ability
> to electronically add and track this information in the PHR where the
> physician and the patient will be table to work with and analyze the
> results in the context of the patient\'s medical history.
>
> As we move forward with our interoperability initiatives, the
> government needs to readdress policy to ensure valid sources of
> electronic medical data are available for PHR use while maintaining
> strict adherence to privacy and security of personal health
> information. PHR vendors should be required to meet standards to
> ensure the privacy and security of their PHR system, whether it
> relates to the PHR application itself or to the receipt or
> transmission of electronic medical data to and from the PHR.
>
> In all cases the consumer should be the owner of their medical history
> as it resides in their PHR and should be given the final say in the
> information they share with health care providers. PHR vendors must
> provide robust flexible applications that allow sharing of medical
> information without compromising the patient\'s right to privacy and
> security but still protecting the integrity of the information as it
> become part of the patient\'s PHR. And I would like to thank the group
> again for inviting us and allowing us to participate in this.

\>\> Thank you. Now Dr. Crawford, CMS, CMS\'s perspective.

\>\> Thank you very much. And I would like actually to point out this is
most emphatically not CMS\'s perspective.

\>\> Okay.

\>\> So thank you, chairman, Dr. Robertson, Ms. McGrath, members of the
work group. Thank you for asking me to come here to discuss the federal
role in adoption levers for personal health records.

> As for where this came from and the reason why this is not
> specifically a CMS discussion, several weeks ago the offices of the
> national coordinator asked a very broad group from the different
> health and human services executive agencies to come together and
> discuss and really brainstorm for this group possibilities on federal
> policy levers for the promotion of PHRs. That group consisted of Mary
> Jo Geering from National Cancer Institute, Jason Bonander from center
> for disease control, Michelle Murray and Kelly Cronin from the office
> of the National Coordinator, Helen Bernstein from HRQ and Lorraine and
> myself from CMS.
>
> So first really a disclaimer. The analysis of policy options that we
> presented in our written testimony and I\'m presenting here does not
> represent the official position of the Department of health and Human
> services but it does represent the opinion of the authors and we hope
> it will provide a useful set of potential options for this working
> group to consider as it moves forward with its recommendations.
>
> So with that out of the way, some of the assumptions that we had going
> into this, first off, that privacy concerns are extremely important
> for this discussion, but we did not spend a tremendous amount of time
> looking at those from the federal levers issue partially because of
> the existence of the privacy and security work group.
>
> Second, we tried to define government really as agency level
> activities which could be implemented without legislation so that
> recommendations could be acted upon, perhaps not quickly but maybe a
> little bit more quickly. And then finally really one key assumption
> that drove all of our discussions is that we believe the consumers
> generally trust their clinicians, that they generally follow their
> advice and the majority of consumers would prefer PHRs which are
> automatically populated with their medical information and are as
> interoperable as possible. We think that as PHRs become more
> interoperable, they will make consumer\'s health information more
> portable, and that\'s going to create a lot of opportunities, actually
> as Dr. Smith said, to build the kinds of applications that we cannot
> really envision right now.
>
> So with that said, so while we are, as for what we are actually, what
> we actually came up with, you have written testimony which outlines
> the methodology that we used to evaluate the different levers under
> consideration. And the interest of time I\'m not going to go through
> the mechanisms but jump instead right to the five areas which we
> looked at in terms of potential levers which are program evaluation,
> and evidence development, standards development and adoption,
> education, health literacy and the consumer experience which we heard
> lot more about, data availability and enrollment incentives.
>
> Start out with program evaluation and evidence development. And again
> as we go into substantially more detail in the document that was
> circulated with your material. In order to make consumer oriented
> decisions using PHRs and health care programs much more information is
> needed about consumers\' needs and preferences. As Paul mentioned
> earlier today, we need to know the best practices for integration of
> PHRs into clinical practice, into disease management and community
> health care. There is definitely a role for the federal government in
> collecting information and implementing the health tools to start, to
> help serve certain particular populations.
>
> First most obvious way to do this is to create an evidence base that
> establishes value and determines mechanisms for integrating PHRs into
> clinical care. Information about consumer needs and preferences is
> very limited, and it is not clear right now which components of the
> PHR will have the greatest effect on personal health and health care.
>
> Different populations will likely have different expectations for PHR
> based on their own demographics, socioeconomic status and health
> literacy levels. Left issues of integration and clinical care have
> really remained largely unexplored, and this is one area where CMS,
> NLM and particularly HRQ can take a very active role. One particular
> area where we think there is real scope is with the use of PHRs in
> conjunction with the HRs in the context of disease management.
>
> Enhancing patient\'s abilities to routinely access own medical
> information could dramatically improve the success of disease
> management programs. And the successful national demonstrations with
> robust evaluations of the value of PHRs in this contest would be very
> important to drivers as a PHR adoption both among consumers and then
> within the private sector perspective as well.
>
> To get there PHRs could be explicitly incorporated, funding
> permitting, into future CMS, chronic care and disease management
> pilots and could be explored, as I believe is already under way, by
> the different branches of the National Institute\'s of Health.
>
> Federal government is particularly well positioned to do research in
> this area. Some recent research that came out of David Cupler\'s group
> up at Harvard noted that the economic rationale for disease management
> by private insurers was not always as good as we would like it to be.
> And one reason that he cited for that was the level of turnover within
> the patient populations for those insurers.
>
> CMS does not have that problem. Some of our carriers might but, as a
> broader agency we don\'t. And the VA also does not have that problem
> so that puts both organization into a very interesting position to do,
> for economic research in the effectiveness of PHRs in the context of
> disease management.
>
> We have a couple of other options which I am going to skip for time
> and get to the next area which is standards development and adoption.
> This discussion was very timely, given the executive order promulgated
> on August 22nd which calls for the federal government to take an
> active role pushing the adoption of interoperable health IT standards
> through contracting.
>
> So obviously one very key interesting point there is the adoption of
> PHR related standards through health plans sponsored both by CMS and
> by the FEHP which is the Federal Employees Health Plan.
>
> CMS and its carriers have the option to, have the opportunity to do
> two very important things, to contribute data, to a patient\'s PHR,
> and then also to allow a patient to transition an existing PHR into a
> CMS or FEHP plan sponsored application.
>
> Both of these activities will require the adoption of standards for
> PHR data formatting and exchange that are still under development
> right now. But once developed, these standards can potentially drive
> adoption quite aggressively. But because the standards are not
> complete the next component of the federal government\'s role here is
> to sponsor standards development as HITSP identifies gaps in the
> existing standards, particularly relating to exchange of data that the
> federal government is already a custodian of, those standards should
> be incorporated by federal agencies in their ongoing contracting and
> ongoing activities.
>
> Again this goes back to Dr. Smith\'s point that there really are a lot
> of opportunities to allow the private sector to build on a basis of
> data that\'s provided by federal government and federal agencies.
>
> Third area we talked about was education, health literacy and the
> consumer experience. And it would be woefully hubristic of me to try
> to cover the ground just covered by the previous panel. What I was
> going to limit this to is to say that first federal government, and
> particularly groups like CDC which is already heavily involved in
> health literacy, can take a leading role in promoting the benefits and
> just the definition of the personal health record to the population as
> part of broader health literacy campaigns already being conducted.
>
> The second opportunity for again, particularly CDC and the NIH
> organizations is to establish standards for the contribution and
> management of science based, consumer accessible health information.
> And, you know, again Dr. Tang did an excellent job today showing how
> important patient accessible clinical data is in the context of a PHR.
>
> This information is absolutely critical, and it is not always
> available. But many HIS agencies have in fact created large
> repositories of potentially very useful patient and clinical support
> data, NIC, CDC. SAMSA. Substance abuse and mental health services
> administration. The FDA, the office of women\'s health and health and
> human service. I\'m sure I left a few off. It is out there. It is in a
> lot of the different formats. And there are relatively few centralized
> locations within the federal government right now to go for that
> information.
>
> Vendors like Cap Med could potentially make very good use of this
> information in the context of their own products. And so one
> opportunity for NIH and CDC is to pursue standards for making this
> information. And again, the other example might be the definition of
> LDL cholesterol available in a way through open standards and open
> vocabularies that allows PHR vendors and providers, whether that\'s
> CMS via my.medical.gov or whether it is a private sector company to
> incorporate that data. That will provide a real development lever for
> companies pursuing PHRs.
>
> Another option ‑‑ another area that is, we felt was very much worth
> pursuit is the development of some common symbology and common
> terminology where it does not currently exist to represent information
> within PHRs.
>
> Fourth area we looked at was data availability. As Mary Ellen just
> pointed out, we do believe that PHR adoption is going to be heavily
> influenced by the availability of data to prepopulate PHRs. We don\'t
> believe that patients are going to be all that interested in keying it
> in themselves, unless they are very sick. And the benefits of that
> self‑keyed PHR data will not be particularly great unless the
> clinician s have access to it.
>
> We saw a couple of, three really key areas where the government could
> support that. First, developing standards for the use and exchange of
> claims‑based PHR data. There is a lot of talk about the Medicare data
> and the VA data and the FEHB plan data as seed information for PHRs.
> There are some challenges here, particularly around quality and
> availability. It is particularly worth pointing out that claims data
> can be very messy. There are ways around this, but there is a
> fundamental lack of specificity in an ICD 9 code. Prescription data is
> generally not available. When it is available, it might be limited
> either regulatorily or technologically and generally is not
> particularly detailed.
>
> The last thing, I would imagine ‑‑ I\'m not a clinician, but if I was,
> I would not want to be making decisions based off of a medication list
> that is six months old and may or may not contain every filled
> prescription and may or may not even be complete.
>
> So this is a primary issue that needs to be addressed and standards
> for addressing these data gaps can be pursued by agencies like CMS.
> One area where CMS is already working very aggressively is in the area
> of ICD 10, which will down the line enable much more granular coding
> of clinical issues within claims and should allow us to populate
> existing future PHRs with more detail from claims data.
>
> Probably even bigger short‑term issue is data release. Right now there
> are no standards for releasing data from Medicare or any other player
> to a private sector PHR. If Cap Med wants to incorporate claims data
> in their PHR, they ‑‑ correct me if I\'m wrong ‑‑ but I believe you
> would still have to go plan to plan and make those arrangements on a
> one to one basis. And there is certainly progress being made via the
> AHIC and the BCBSA activities in that area, but it is still very much
> incomplete.
>
> There is an opportunity for the health and human services office of
> civil rights to come up with a standard set of day release forms which
> can be adopted by CMS, could be adopted by the veterans health
> administration and could also be adopted by the private sector to
> create a standard for data release in the PHRs. This also addresses
> the issue that was discussed earlier about who\'s comfortable posting
> the PHR. It may be that many patients will not be comfortable with a
> \"Medicare hosted PHR\", but they would be comfortable with a Cap Med
> PHR, another vendor\'s PHR. And if that\'s the case, then that data
> does belong to those patients and they should have the ability to take
> what we know as the government and put it into their own repositories.
> Then the final area that we had in the data availability section is to
> pursue the design of appropriate pay for performance measures and
> demonstration activities. And again, this is an area for CMS, NLM and
> AHRQ, in particular to pursue the value of PHRs, particularly in
> chronic care.
>
> And then finally enrollment incentives. And again we had a number of
> these, and I\'ll just highlight. The first was to automatically enroll
> new Medicare beneficiaries into a PHR program. We have 2.2 million
> older Americans coming into Medicare every year, and that\'s a
> tremendous opportunity to bring them into the PHR fold, particularly
> in the context of the welcome to Medicare example.\
> CMS is already conducting some pilots on prepopulating Medicare and
> Medicaid data into PHR, and hopefully we will learn quite a bit from
> that experience. We do need to think ahead here because the boomers
> are coming. The Baby Boomer population is going to start becoming
> eligible en masse in about five years. And unlike perhaps the current,
> the current Medicare generation, the level of computer and technology
> literacy among that class is much higher. And, you know, we saw some
> very interesting numbers earlier today about age penetration and
> Dr. Tang\'s clinic and, you know, those numbers are not going to go
> down.
>
> Second option is to look at the use of PHRs and post marketing
> surveillance. I won\'t go into too much detail on this right now
> except to suggest that, particularly given the recent FDA trend
> towards increased patient registries, and this recently had been in
> the news with Accutane which is an acne medication that has
> substantial potential side‑effects for pregnant women and also with
> tisadbury (ph), which was recently brought back on to the market,
> which a very comprehensive risk minimization plan involving a patient
> registry for patients on the drug.
>
> There is an opportunity to develop standards, and again this is
> something for FDA in particular to look at, to streamline the patient
> registry activities.
>
> And then finally, in this area we were very excited about the use of
> PHRs to promote a role in clinical trials. That\'s actually my, sort
> of my more recent background is on the clinical trials side. In fact I
> used to work for a competitor of your parent company. But not on PHRs.
> On medical imaging. And in one of the statistics that we had to work
> with was each year up to 85% of clinical trials are significantly
> delayed due to enrollment problems. And yet, we have very motivated
> populations, in particular disease categories ‑‑ that numbers from a
> center wide survey in 2001 ‑‑ who are very eager to find out about
> clinical trials. And we certainly have a pharmaceutical industry and
> academic research community that is very interested in finding new
> patients. So there are some excellent opportunities for the federal
> government to push ahead on standards for enabling patients to be
> matched with clinical trials in a secure way that does not violate the
> patient\'s privacy, by sending their PHRs without permission off to
> third parties and again this is an area where the national cancer
> institutes have been doing a lot of work in this area, including work
> which I just found out about on establishing very specific standards
> for representing inclusion criteria for clinical trials which could be
> used for this kind of application. And I would refer you to Mary Jo
> Deern (ph) from NCI to find out more about that.\
> Then extremely briefly, I promise, the final areas we looked at for
> enrollment incentives were enrolling newborns and new recruits in
> tri‑care. That\'s 114,000 infants born to the military families every
> year and 185,000 men and women inducted into the armed services
> continue to enroll veterans in my health vet. VEVA. It\'s been very
> promising start so far. And then last but certainly not least, the
> social security administration every year enrolls roughly 3 million
> people into disability benefits, which requires a very complex range
> of health and medical assessment processes. All of this data could
> potentially feed into a PHR and be used to coordinate the care of that
> disability recipient going forward.
>
> There are some really interesting opportunities, and the social
> security administration is already looking quite closely at the
> opportunities for using PHRs to streamline SSDI enrollment. There are
> some challenges there, chief among them being that social security is
> not actually a health care provider. So they are in a position to help
> provide a framework but not actually to use the PHR in clinical care.
>
> That, I believe, more than uses up my time. So I would be very happy
> to take questions. And thank you again for giving me the opportunity
> to present these findings. And I would also like to once again
> acknowledge everyone else who was involved in putting this document
> together. It was very much a group effort and it was quite a lot of
> fun to work with everyone on it.

\>\> Thank you very much. That\'s very helpful. Let\'s take about seven
or eight minutes for questions here. We will stop at 3:30. Jason?

\>\> Again, thank you both for taking the time to present. And also,
Will, definitely thank you. Did a great job of presenting the group\'s
long and delivered response here. My question for is for you, Mary
Ellen. When you started your presentation, you spoke to the importance
of usability. And I\'m wondering, actually two paired questions. One,
what are your thoughts on standards around usability and the role that
the government may play in sort of helping define or emphasize such
standards? And do you think they may have an impact on competitive,
essentially a competitive advantage? If we think about web sites or
applications that are designed poorly, it is less likely that they will
be used as opposed to something that\'s more likely, or better designed.

> I\'ll try and answer that question although I\'m not sure that I
> really have experience in that area. I think personally as far as Cap
> Med is concerned, we are working with usability experts to try and
> understand what PHR users might want and how they might want to
> interact with this system. I think that there is not a lot of
> information out there right now on how those pieces fit together. And
> so, as far as any way that the government could become involved in
> that, I would certainly think that that would be helpful. I\'m not
> sure that that really answers your question very well.

\>\> I just have one comment to add on that, which is that it would be
very possible for the government to go and overspecify. I don\'t think
what we want is a federally mandated standard that says that that shalt
put the medication list in the upper left‑hand corner of the first page
of the PHR and use 12 point times New Roman to list the problem. I think
that would be overspecification. So as we do develop standards, whether
they are for vocabulary or symbology, we need to do that in a way that
preserves the ability of the innovators and the people actually out
implementing these to experiment with new approaches. But by providing
content, particularly some of the extremely difficult health literacy
activities, we can hopefully really jump start that process.

\>\> Mary Ellen, might I just ask about Cap Med? This is Rosemarie
Robinson. You have a PHR\'s, a large number of PHRs that a large number
of people have picked up. How much are they using those PHRs and is
there, and can you break it down to the three? You have three types of
PHRs, three sort of platforms. To what degree are they using those on a
regular basis?

\>\> Well, as far as the online PHR actually that is about to be
released so we don\'t have data on that yet. And I know that we are
collecting data. The way that our business model works is that we are
working with hospitals and health systems, for example, or employers who
are rolling out personal health records and we are branding our product
to a particular organization. So the data that is available really is
through that particular organization and not necessarily through Cap
Med. So data that is available is through that particular organization
and not necessarily through Cap Med ‑‑

\>\> So you ‑‑

\>\> ‑‑ as far as use. If the registration is required then we would
collect that information and be able to understand how the individuals
are interacting with it.

\>\> Okay.

\>\> But broadly speaking, we would not have that information available.

\>\> Okay. Other questions? Paul?

\>\> Many people around the table who can\'t make this recommendation. I
would like to commend and thank the individuals who do not represent
their agencies on really an excellent job, on a thoughtful and
deliberate, a framework really to consider policy levers. And I think
this matrix is incredibly helpful. If you just picked up the three
pluses as things we can do as a no brainer, I think we would be well
along in terms of what comes out of the process at the end. So I
certainly want to thank the people who put this together.

\>\> We will echo that. Susan, did you have your hand up?

\>\> Yes, two quick questions in terms of a little bit of surprise. One
was in Mary Ellen\'s testimony, and the number of times from the private
sector, looking to government mandates or government requirements, as
levers to promote this, when I would have thought that the private
sector would much prefer having the standards developed but not
mandated.

\>\> Okay.

\>\> Susan: And in Mr. Crawford\'s presentation also, that particularly
in the several of the enrollment opportunities, the number of those well
intended from a public policy point of view, how ‑‑ what were the value
balances in terms of giving the individual at least an opt in before
these automatic enrollment matches went forward? So whichever order you
‑‑ those are the two surprise take‑aways.

\>\> Well, with respect to automatic enrollment, that\'s a very good
question. And we certainly, as a group I don\'t think we have the
answers to that. The My Medicare visit that ‑‑ welcome to Medicare
visit, excuse me ‑‑ is an excellent opportunity, in my view, to deliver
patient education to the patient. And I think that will be particularly
the case if we can find a way to make the PHR a useful clinical tool for
the physician who is conducting that welcome to Medicare visit. If they
see value in it for themselves down the line they will be much more
likely to promote it to the patient.

> Whether automatic enrollment or an opt in or opt out is the most
> effective public policy mechanism, you know, I think that\'s an area
> where, frankly among more things we need more research we need pilots.
> And that will tell us how likely people are to opt in and opt out. And
> I think that how likely ‑‑ if they are given the opportunity to say
> yes or no right there at that initial visit when the clinician is
> filling out whatever the usual paperwork would be, and the clinician
> is given the materials to make a compelling case to the patient for
> why the PHR is a good thing, you know, then I think we will see
> relatively high uptake without automatically sweeping everyone into a
> PHR.
>
> So in a lot of ways it is about creating an opportunity for the
> patient to say, yes, you know, in a structured well supported way.
>
> Now, whether that PHR should be run off of the my.medicare.gov portal
> or whether it should be a much looser activity where perhaps there are
> PHRs that are supported by Medicare advantage plans or by third party
> vendors entirely or by the volunteer health community or any of a
> number of other potential sources that can tie in to that opportunity
> whether it is a, whether it is entering Medicare or being enrolled in
> tri‑care or coming into the VA, you know, that\'s ‑‑ I\'m looking
> forward to your recommendations on that.

\>\> The fact that ‑‑ I mean the welcome to Medicare visit uptake is
pretty tiny so far. So are we assuming that this would actually, they
would kind of co‑enhance each other?

\>\> That would certainly be the hope. Again, I think a lot of that will
depend on the value of the PHR to the clinicians which will give the
medical community another opportunity or another rationale to promote
the welcome to Medicare visits.

\>\> Okay. Lorraine?

\>\> Lorraine: Right now the, those visits are not widely promoted. You
know, being able to go there. So the uptake that we have to share the
FYI is really people who are going there voluntarily so then we can
begin to imagine what could happen if we promoted it.

> The interesting complication for, well, or opportunity I guess as we
> build these is, what kind of PHRs will people choose to have and will
> there be multiple ones, someone who is a retirees with a VA and has
> something through Medicare, where do they go for that and that\'s part
> of what we are going to have to sort out.

\>\> All right. Okay. One last question.

\>\> Thank you. Christina Collins, AMA. I guess I certainly want to
congratulate everybody in the fine thinking that went into these
recommendations. Certainly tremendous deliberation has gone on here.

> I\'m concerned, and certainly want to make the statement that much is
> currently being asked of physicians who are participating in the
> Medicare program. And I\'m curious, there are enormous market
> incentives ‑‑ for physicians who are a critical element to the
> successful adoption of this. Are there other particular plans or
> strategies that perhaps CMS is planning to emphasize as they go
> forward in their relationships with physicians in helping to adopt
> these?

\>\> I would be inclined to refer you to the office of external affairs
downstairs. I ‑‑ obviously very important point. There is a tremendous
amount being asked of physicians.

> In these deliberations and, you know, again, one area that we did not
> take into account in any of these discussions, whether it was for what
> we were going to ask the physicians or asking of the agencies
> themselves, is the appropriate resource mix in conjunction with
> everything else that they are doing.
>
> It may be that there are other interventions beyond PHRs that will
> have a more cost effective health return. And we looked at this. We
> sort of took the ‑‑ we took the idea of PHRs as read and we went into
> this. Now, again, I think by minimizing the friction for the physician
> and designing a PHR product that is clinically useful and providing,
> for instance, health literacy content in the context of a Medicare
> promoted PHR has the potential to take burden off of physicians. It
> also has the potential to create burden for physicians because more
> information is being presented which might require more follow‑up
> explanation. And that\'s an opportunity for us to do more research
> both at CMS and within the Department of health and human services
> more broadly, to try to find out where that balance lies.

\>\> Terrific. Well, thank you very much. We are going to take a 10
minute break. We will start back promptly at 3:45. I might ask on the
phone, we will start then with the oral testimony. We have one person
here. We may have individuals on the phone. So Matt, can you get us a
list? We need to try to do this in 15 to 20 minutes. So if you can see
how many people are on the phone, we of course can take people at our
next meeting if we cannot fit them all in now but if you could kind of
queue people up for us?

\>\> Yes, absolutely. If you have one minute right now explain the
process very quickly.

\>\> And we will let you do that while the committee takes its break.

\>\> Okay. So members of the public who are following along on their
webcast right now, you will see that there is a number and instructions
for calling in to make a public comment up as a slide information about
resuming at 3:30, is obviously a little bit out of date. As you heard
the chairman say we are going to come back in 10 to 15 minutes. But in
the interim you can call in and indicate your interest in making a
comment, and you will be placed in the queue. There is also some members
of the public I know already dialed into this conference because they
were having audio difficulties through their computer. So if you are on
the phone you simply need to press star one. Then when we get called
back to session by the chair, we will do some type of process, either
alternating or going to sequentially with people making public comments
in the room and making your comments on the phone.

> \[Proceedings adjourned\]\
> \[proceedings resumed\]

\>\> In our next segment we will take statements from the public. These
will be limited to three minutes per person. We will begin with Edwardo
Artease from People Sharward (ph) Corporation. There is a microphone. I
see you are at the microphone and we will let you go ahead.

\>\> Okay. Thank you very much. I\'m Edwardo Artease. I\'m a physician
but I\'m here on behalf of People Sharward corporation which is a PHR
company based in San Francisco. And I wanted to start with the comment
Dr. Tang made about the institute of medicine made, that patients should
have unfettered access to their own medical information. Which as he
pointed out, is not the current state of affairs in health care. But I
should say this should be a driving principal in the evolution of PHR
systems. Point to keep in mind. So I know there is a lot of issues
related to PHRs, but I wanted to talk about two specific issues today
since we don\'t have much time. The first is the issue of electronic
data exchange between and provider based PHR systems and PHRs.

> Over the past five years, most of the focus on health care data
> exchange has been on interoperability between EHRs, however, little
> has been done to facilitate electronic data exchange between provider
> based systems and consumer controlled PHRs. Now Dr. Tang gave a nice
> demonstration of the Paula Alto medical foundation online PHR system.
> There is a lot of nice ones out there that are great. My VA has My
> Healthy Vet. Women\'s hospital has patient gateway. Epic has my chart.
> So there is lot of great systems out there. However, as Dr. Saffron
> pointed out, these are what are considered tethered PHRs. And in a way
> they are not ‑‑ the whole definition of PHRs is still up in the air,
> but they are kind of more of a portal to the EHR. And as such, in a
> way they are not really that much under consumer control. They are
> really controlled more by the provider organization, not by the
> consumer. And to give an example, what if I\'m a patient in
> Dr. Tang\'s practice, and two years later for whatever reason I end up
> having to go to another health plan. So I go to Blue Cross/Blue Shield
> so am I going to be able to access the Paulo Alto medical foundation
> information? Probably not. And two years later I go to Kaiser, and
> later on some other system. So you can see this is not really a
> portable consumer controlled PHR. It is an important offering. I think
> it is important, but I think that\'s important because it is not
> completely consumer controlled and it is not portable.
>
> Now, the other issue is what if I\'m part of that foundation and I
> want to keep my own PHR. I want to keep my people chart PHR or
> whatever other kind of independent, stand alone PHR system I\'ve been
> using for five years because I move around a lot. Can I use that and
> also access information from whatever health care plan I\'m part of?
>
> Right now, the answer is no. So I think that\'s really important issue
> as we move forward in terms of the PHR market.
>
> So given that issue, there is a couple of just recommendations we have
> towards the group. And I know a lot of things are things you have
> already heard about, before probably reinforcing what you already
> know. But we recommend that you develop a concrete action plan that
> will facilitate data sharing between EHRs and not just EHRs but
> provider centric PHR, PHR portal type thing, with district PHRs,
> including consumer controlled PHRs. And a couple of things that you
> could consider doing are, one, leverage current and future government
> funded interoperable projects to explicitly include PHRs. Two, provide
> incentives to promote and ensure data sharing capabilities with PHR
> systems. And there\'s lots of things you could do, but financial
> incentives in terms of reimbursement. You can do things like
> regulatory issues maybe require it. You can do research funding and
> things like that, which we talked, they talked a little bit about
> earlier with speaker from CMS.
>
> Another thing that you might want to consider is developing and
> supporting a certification process similar to the current EHR process
> that\'s been ongoing. And there is lots of other recommendations we
> have. We\'re actually are supplying some written comments as well that
> goes into more detail, but because of time we won\'t go into detail.
> So if you are interested please take a look at that.
>
> The second thing we wanted to talk about is the fact that because,
> somebody pointed out earlier, a lot of people don\'t have EHR systems
> right now. The majority of providers are not using EHR systems. And
> those that are using EHR systems are not sharing their information
> with outside organizations and with consumers. They are still kind of
> stuck within your organization. When you are trying to get some of
> this medical record data, if you are trying to populate a PHR, right
> now you have to go and get medical records. You have to get copies of
> them and maybe scan them in or enter in the data, kind of ‑‑ and
> Peoples\' Chart has actually had a lot of experience with this. Over
> the last five years they have been collecting records on behalf of
> consumers. And during this time we have discovered some interesting
> things. First there is substantial disparity in states law governing
> the fees providers can charge patients for theirs records. The laws
> governing the limits on these fees are under the jurisdiction of state
> civil codes, which are often influenced by special interest groups,
> provider organizations, medical record management companies, et
> cetera. And they did a study, the national PHR research study that
> involved of three study sites, and found that fortunately 31% of the
> providers did not charge patients for their medical reports, but the
> majority did charge patients for medical records. For those that did
> charge medical records, it turned out that the fees varied from as
> much as \$7.22 per page to as little as 40 cents per page. But even 40
> cents per page is a lot more than what you pay if you go to Kinkos or
> Office Depot. But imagine paying \$7.22 to get copies of your own
> medical records. And a lot of other places tack on other fees, like
> processing fees, handling fees, et cetera. The average fees charged to
> patients for administering and copying a medical record file ended up
> being about 61 cents per page. But that included the 31% of doctors
> that didn\'t charge anything. if you excluded those, it turned out to
> be 80 cents per page, which can be prohibitively expensive. The
> average size of records collected was about 75 pages, and the average
> cost using the 61 cent per page number was \$46. Now for some of us
> that may not be too much but for others that could be prohibitively
> expensive and could be a barrier in terms of accessing the medical
> records.
>
> And now also the other issue though is that we realize and acknowledge
> that there is a need to cover the costs of labor and supplies for
> copying medical records. But we are concerned about is that some of
> these companies are actually using this as a profit maker in terms of
> making money by copying these medical records, and we don\'t think
> that\'s really appropriate. The other issue we discovered is it is
> very difficult for patients to sometimes access their records in a
> timely manner. From this study it turned out the average number of
> days for people trying to receive their records was 37 days, and
> that\'s if they have a lot of experience doing this. So we can\'t
> imagine if an individual person is trying to get them on their own, it
> could be even more difficult and longer. Nearly 30% of records took
> over two months to collect. And two‑thirds of requests required at
> least two attempts, while a quarter of the attempts required three or
> more attempts to secure a copy from the health care provider. I just
> want to bring this up because this is something you may not know that
> much about or may not have heard about. And I think it is a barrier,
> at least now that we don\'t have this electronic exchange and people
> accessing their records and something you may want to think about. I
> don\'t know if you could address that. A couple things we thought
> about in terms of the call for action is that medical record copies
> need to be made affordable for patients. Like regulation that governs
> patient privacy, and patient access to medical records. The provider
> fees that impact patient behavior should be governed by national
> standards and regulations. We don\'t think they should be subject to
> individual variabilities and variation in each state, which is often
> driven by providers, medical records management companies, who are
> basically setting the prices.
>
> We have think that records should be delivered in a more timely
> manner, and I think some of these things are going to require
> eventually maybe regulatory entity able to react quickly and focused
> way to address these issues of high medical record costs and
> accessibility to patient records. Thank you very much.

\>\> Thank you. Matt, do we have individuals from the public on the
phone who would like to comment about this testimony?

\>\> No, we don\'t. We have had the information and phone number up for
the last 20 minutes, but nobody has called in yet.

\>\> Okay. Very good. Then we will be caught up. Very good.

> We always want to have testimony from the public, but we have gotten
> behind so today it will help us.
>
> So over the next probably hour and 20 minutes or so we do have time to
> discuss both themes, first really themes and gaps from today\'s
> testimony and testimony that we have heard before. We will then spend
> perhaps 30 or 40 minutes talking about our priority recommendations to
> AHIC and getting a little more detail about the visioning process. And
> we will ultimately end up with our action items. Okay.
>
> We have, just being handed some written testimony.
>
> Florida Department of Management Services and ‑‑ thank you Linda
> Mills.
>
> So let\'s talk a little bit first about the themes in what we heard
> today in our first ‑‑ we might start with our first panel on consumer
> engagement and literacy and what that means for our ultimate
> recommendations here.
>
> Ross?

\>\> Would you repeat the question again? I\'m sorry.

\>\> So let\'s spend a few minutes talking about the themes that came
out of today\'s testimony, maybe starting with the consumer engagement
literacy group, and keeping in mind if there are gaps that we are
finding or if we think that we are, we have gotten a pretty full picture
on this area.

\>\> I would like ‑‑

\>\> Gail.

\>\> I would like to say, I think there were several themes, but I guess
the theme that I picked up on the most was, I was fairly concerned about
this notion of health literacy because I thought that Mr. Smith, I think
it was, said it best. People learn how to use a cell phone. I don\'t
care what kind of literacy. People learn how. And I think it was the
motivation. And I think we have to keep that in mind as we are thinking
about health literacy. And so I think those were some of the critical
things that we need to be thinking about as we are moving forward on
PHRs and maybe not worry so much about whether somebody is literate
enough to do it. I think if it is out there, people will figure it out
like they do on everything else.

\>\> Comment from the phone?

\>\> Yes, go head.

\>\> Rob Tennet from MGA. I want to build on that because I think
that\'s absolutely correct. I thought one of the best analogies was the
credit card. The fact that Diners Club started out and it was a very
sort of niche market, and maybe we need to think about trying to get
some group, whether it\'s sort of technologically sophisticated seniors
through the Medicare program or something like that, and get it out
there. Get it used, get it adopted by, even if it is a fairly small
group. Then the momentum might build. And I agree with the last comment,
that even if it is a credit card, most of us don\'t know the inner
workings of a credit card, about how the magnetic stripe actually works
but we are still able to take advantage of it. And maybe we don\'t need
to be worried about making it so simple that everybody understands it.
As long as they understand the use and the value, then I think the rest
can come later.

\>\> Well, now, it is out there. I mean, there are PHRs out there ‑‑

\>\> Yes.

\>\> ‑‑ already, and I guess to your point, they are being used by
varying kinds of populations. So I don\'t know about the Paula Alta,
what the demographics of your population is.

\>\> (Inaudible) Silicon Valley, which is ‑‑

\>\> So we have got a high end‑user group here, and we have the Omaha
Meat Packing employees.

\>\> But these are all tethered.

\>\> Right.

\>\> I think there is a difference in that. And a product that\'s out
there that somebody is going to go purchase and try to use themselves, I
think is a real difference in.

\>\> Right. No, I was just saying that there are some out there that
are, you know, where we have different groups that are using them that,
seem to be using them reasonably well. Lorraine.

\>\> Lorraine:  ‑‑ that was one of the themes that I took away from the
research, is there is probably more than 100 PHRs out there. Some stand
alone like the Cap Med which you could buy and plug into your own
computer and is not connected to anything. And then the ones that
connected to the health plans and some to some providers, but you can
also have it on your own. And they are in use. And I think as we start
looking further at these, we will understand better why people do use
them and what the difference is between the people who use them on a
regular basis, like average four times a month, and those that do it
once because it is interesting and don\'t have a further use for it and
how that will change.

> And so the theme that, part of what I was taking away is these are in
> fact out there. And what we don\'t have is sort of a consolidated
> view. Just like we don\'t have the consolidated definition.

\>\> Lorne.

\>\> ‑‑ for Microsoft. One other thing that I thought emerged from that
conversation was that we need to consider how to design for differences.
And I think technology is capable of overcoming a lot of barriers that
we saw with the segmentation of different populations using visual,
using audio. I think we can reach a really broad audience, and so
perhaps a recommendation to include, is to design for differences and
really hone in on that.

\>\> We did hear at our last face‑to‑face meeting, we did hear testimony
from groups who said, you know, you really do need to make sure that
this is going to be available, that we are not going to have people who
are disadvantaged in it now, whether it is tethered or untethered,
whether it is programs that people have to purchase, some of which are
now coming along at relatively, relatively low, sort of AOL like rates
or even zero rates if you will. So at rates where you can get something
for reasonable subscription. And I guess we don\'t want to ignore the
issues of health literacy. Maybe the idea is to encourage things that
will let them ‑‑

\>\> Universal design. I think that\'s a concept which is basically,
when you are designing a technological tool to include text that you can
make larger for different type of population and audio/visual, and I
think that can transcend a lot of our problems.

\>\> Well, I mean, the message that sort of came clearest to me was this
issue of segmentation again. And it seems to me that, you know, as I
sort of net that down to our challenge and previous testimony, that one
of those segments has to be the disadvantaged digital divide, however we
want to say it, low literacy. Whether that exactly is the same
population or just different aspects of an overlapping segment. But no
one else is ‑‑ you know, the business community is not going to tackle
that segment. The wealthy practices in Silicon Valley don\'t have that
as a catchment area so it is not even remotely their business problem.
So that if we don\'t actually stimulate inner city PHRs, for lack of a
better ‑‑ that just will never happen on its own. And so that we have to
be proactive, trying to explore what\'s happening in that population or
in that market segment, if that\'s ‑‑ that we cannot stimulate a market
to do that.

\>\> Let\'s see. Ross, you are next.

\>\> First following along with what Charles was just talking about, if
‑‑ as we think about the role of this body and subsequently the AHIC, we
are not going to be designing systems. We are not going to be doing any
of that kind of stuff at that level. So I totally agree with the
concepts of universal design and designing for the differences and
making, you know, just like this letter from the state of Florida about,
you know, recognizing the importance of making this accessible for
people with disabilities. Totally agree with that. I\'m wondering at
that level if one of the things we can do is all of the things we do
target in terms of prioritization of target markets, segmented markets
is to Charlie\'s point, looking at those most disadvantaged, least
likely to be catered to by the population. And that\'s probably the
extent of what we can do for is that, for driving themes in the market
place. What I think our obligation is though is to make sure that
information can flow into those systems so they can then take that
information and tweak it to the audience that, for which it is intended.
And those would be many different audiences, you know. It may be another
language, if they be visually or auditorily impaired. Any number of
things, or a pediatric audience that needs something in a very different
metaphor than what we are used to so. That was one comment.

\>\> And you think that might, just to follow up, do you think that
might be done ‑‑ we heard a lot about levers from the group that talked
about levers and, you know, we could perhaps encourage that sort of
activity in a number of those ways.

\>\> And to me this looks like our blueprint for recommendations. I just
think, I\'m so excited that we have this document in our hands now
because it really looks like the things that we have been asked to find.

\>\> Yeah.

\>\> Somebody did our homework for us, and that\'s ‑‑ thank you. Really,
this is just tremendous. And, you know, reading it through it, there is
so many of these touch points that HHS ‑‑ was asking us to find these
things so I think that is it.

\>\> Can I add to that quickly. And maybe we do need to think about the
segments of the population as you all are talking about in terms of who
can do what, both in the public and private sector to reach those
segments. And maybe we need sort of a systematic way of evaluating that,
sort of the actors or the entities that, as a part of their mission,
they target those segments of the population. So that obviously the
federal government across, you know, agencies and departments can reach
a good number of the segments of this population, but they are certainly
not the only player here. There is so many other actors in the private
sector and nonprofit world that are equally as important. So as a
homework assignment we can start to think how to map that out.

\>\> That might go to the other theme which was incentives, and we
probably could come up with some incentives to direct that. That\'s ‑‑
yes.

\>\> Both those incentives and research ‑‑

\>\> Yes.

\>\> ‑‑ to see what\'s really ‑‑ Lorraine.

\>\> Lorraine: On to the other key feature that we realty need to focus
on is the issue that\'s been brought up a number of times including by
the public testimony is interoperability and portability. Because if we
cannot have this exchange of all of that information, then whatever tool
someone is looking at will be missing information. And it is already
going to be complicated to get the information, giving the right
messages and being accurate.

\>\> And if I could tack on to that, that was part of my second comment
was ‑‑

\>\> I\'m sorry.

\>\> That\'s okay. It is about ‑‑ I\'ve been having metaphorical issues,
I guess, and it is about this notion of a tethered PHR. I know ‑‑ it\'s
been troubling me for a while and just dawned on me that my trouble with
it is the way currently tethered PHRs work is they are really welded.
And Paulo Alto is an example. If you are not in the system, the PHR is
not useful to you. And so there is, I think there is this other question
of the carabiner kind of tether, the clamp that mountain climbers use.
You clip it on, you clip it off. You want to go somewhere else, you move
it somewhere else. That\'s what\'s missing right now as another type.
And to me that\'s the optimal type. Yes, it is tethered when I am
connected to this doctor and this practice and this employer may be
sponsoring it. But as soon as I go somewhere else, I click it off and I
move it over here and I get my other employer to sponsor it or I pay for
it myself or now I\'m in Medicare. And I take all the stuff that I\'ve
been using as an employee person or member of UAW and now I\'m getting
Medicare benefits.

\>\> Comment on the phone?

\>\> Yes. I just wanted to add to that. And I think it is a great point,
and it really gets to the issue of standards. Because if you have got a
standard that allows this, what I\'ll use portability or
interoperability. So if you move from one plan to one plan and you move
from one area of the country, providers can still read that information,
which I think is critical for us to be talking about the standard
itself, whether it be CCR, something like that, because it\'s already
out there. It\'s being used. We need to be promoting this as an
opportunity for the data to move and be read.

> One other point on the levers, and again I\'ll draw the analogy with
> the credit card. The levers with the credit card are two fold. It is
> convenience for the shopper, and it means the shopper is going to go
> to the shop that accepts that credit card. And so the levers are on
> both sides with the PHR. Because it is not good enough to have the
> lever just on the patient or consumer side. Because if the provider
> won\'t accept that credit card, won\'t work with that PHR, then it is
> useless. So I think the incentives have to be on both sides, and the
> ROI have to be proven for both sides.

\>\> Now, those are very good points. I think, you know, one of the
issues in how we were ranking tethered and that was that clearly you
have to be attached to a system that can put information in, and that\'s
the good side of tethered. The other side of tethered is the
nonportability and so, you know, we need that language to reflect that.

> I mean, clearly we expect to be able to be able to get our medical
> information, which does belong to us. I\'m not a bit surprised at the
> testimony we heard about how long it takes to get because that\'s how
> long it takes patients to get their things together when they come to
> see us, and it can take months. And it comes in dreadful form often,
> so that it is really sometimes useless and ‑‑ but it does take a lot
> of time for somebody to go there and Xerox all those pages so you see
> those signs of that.
>
> But the concept that you might not be able to take this information
> does suddenly seem really at odds with what we do at all other medical
> information. On the other hand, you know, a group has but together,
> say, put a big effort and a big investment into creating something
> that\'s tethered to their practice.

\>\> You know for the standards again I always end up going there,
because, in my opinion, whether it is tethered or non‑tethered, a
baseline standard to which we all can operate can promote the extended
use. And, you know, in Paul\'s situation with his group as a standard
emerges, I would expect that group to move to that standard so that
interoperability would follow as adoption is promoted. You know, we are
very much tracking. SureScript watching these standards emerge. And I
think that in order for companies to have market appeal, if you will in
the cell phone example, you know, it doesn\'t matter what socioeconomic
group you come from, cellphones are everywhere. If it is prevalent and
it is, and there\'s a want, it will rise to the top. And for that
situation, those PHRs who do evolve and become interoperable when hits
the, you know, those standard next week and promotes it through to the
public domain, I think it will make it the cell phone that everybody
cannot live without. In the interim, I don\'t know if I would be willing
to go and say that non‑tethered verses tethered is a better approach,
but I\'ll say there are some advantages to having a tethered PHR.
However, my tethered PHR does not mean that it is not interoperable.
When I ‑‑

\>\> Or portable.

\>\> Or portable, right. So I may have a different definition When I
talked about tethered PHR, it is a provider‑patient relationship.
That\'s my definition of tethered. It is not that it is not
interoperable. It is not that it is not allowed to be passed. It is a
relationship between a provider and patient. A non‑tethered being where
a patient provides the information and has to run down paper or medical
records, I think that\'s a tougher sell. I think if there is providers
who can help to promote or ‑‑ I say providers, but entities that can
help to promote and encourage consumers who utilize the tools that
allows them to amass their medical information, and hopefully
electronically in the near future, verses chasing down paper records,
I\'m leaning towards that. So ‑‑ but I\'m all about standards and I\'ll
be there at HITSP next week and hopefully will come out of that
something.

\>\> Paul.

\>\> I wonder if the group would consider changing the terminology from
tethered to integrated. And the reason is the integration with the HR
that provides the value. And obviously the tethering is related to that,
but it is not a motivation. So just like Cat was saying. So for example,
even though we pay a cost per patient we ‑‑ no one has ever been turned
off. So they, in a sense it is portable, where they were, wherever they
go. But it is not interoperable, only because the standards are not
there. And I think as soon as the standards are there, then we would
make it interoperable. So I think the value proposition is the
integration and not the tethering. So that might be a consideration just
in terms of describing what it is we are trying to achieve.

\>\> I guess it is described ‑‑ I mean but you might have either, right?
So yours is interactive. So it\'s, so in fact you have the
physician‑patient interaction. And you have the interaction with the
electronic health record. And you are saying, but it wouldn\'t
necessarily be true, that if a patient leaves and goes elsewhere, it is
portable. They can take the information. But you might have a system
that was equally interactive that really was tethered or even welded, so
that when the patient leaves it is too bad. You know, they can ask you
for paper copies and they can ‑‑ we will be happy to print it out for
you and you can enter it into the next, into your USB port, flash drive.
So I guess, we may ‑‑ I mean, I think you are right. We may want to
make, we want to make the definitions right. But those could kind of go
either way, couldn\'t they?

\>\> Well, I think we are looking ‑‑ you could have a perspective of
technology or application, software application, or you could have a
perspective of what\'s the need you are trying to fill.

\>\> Okay.

\>\> And the need we are trying to fill is the integration between the
provider contributed record and the patient contributed record and
having them integrated.

\>\> Yes.

\>\> We are not trying to fill a need by making it tethered to anything.
A consequence of lack of standards is that it becomes tethered to a
system no matter what system that is.

\>\> Do you think that\'s the ‑‑ so do you think that\'s the, simply the
result of a lack of standards, or do you think in some circumstances it
is the desire to keep that patient population, if you will, a little bit
captive or to make it ‑‑ I don\'t know.

\>\> Well, I mean, I can only speak to the people I speak to. And I
don\'t really ‑‑

\>\> You don\'t get it.

\>\> I mean, I think people use it to attract patients as a
differentiator. I don\'t think they hold the data hostage on purpose.
That\'s just speaking word ‑‑ I had no idea what goes on inside ‑‑
that\'s not our focal.

\>\> Comments on the phone? Yes?

\>\> I\'m blank.

\>\> This is a very interesting conversation because it really is
getting at the foundation of the work we are trying to do here. And from
my perspective, what we want is to promote a PHR standard that works in
a multitude of settings. And ‑‑ because you have got to keep in mind,
our own survey shows that only 14% of medical practices have EHRs so we
cannot be tethering the PHR to an EHR at this stage. So in my mind, this
all reverts back to what HITSP is doing and is it planning on doing in
the next few weeks, which is to promote an interim PHR standard that has
no validity.

> I think we need to be thinking about a standard that allows, for
> example a patient to print it out in PDF format and carry it with them
> in paper form and also allow a nontechnically advanced practice to
> utilize the PHR in Word or Excel or anything else they have in the
> practice to make it as interoperable as possible. So I guess my
> question to the group is, should we not be promoting the standard that
> has already been indorsed and vetted through committees, meaning the
> CCR and the CDD instead of what they are planning on doing with this,
> with this interim XDS XBHR standard.

\>\> I\'ll comment on that a little bit, but to Paul\'s comment earlier
again. You know, if you have the right cell phone they will come. I
think attraction, you know, to your interoperabilities what, initially
will bring them out. They have got a PHR and now they have got a PHR, if
I transfer out of the state, I can take it with me.

> To the HITSP, I know there is quite a bit of discussion surrounding
> the HITSP vote next week and how that vote will go and how those
> standards are being split up or differentiated from one another. As
> Robert mentioned on the phone, the CCR is one up for discussion, and
> that one is a publically balloted standard out in the public domain
> already today. And there are some other standards there for
> discussion, for the PHR that are not currently balloted or out in the
> public domain. So there is quite a bit of, I guess, argument as to how
> that vote will go. From what I understand ‑‑ and, Robert, I could be
> wrong ‑‑ there may be a split of the vote in terms of utilizing or
> promoting forward standards not yet balloted not in the public domain
> and splitting the vote between those that are already balloted and
> approved standards. So, you know, I think we are getting closer. I
> think there is a possibility that we will have a standard that will
> promote interoperability. And I guess my concern, I go, would go back
> to, you know, maybe there is a baseline standard for electronic
> interoperability that we are going to get from HITSP. But then there
> is also this notion of, well, if we are trying to really empower
> consumers and they\'re not there yet for electronic transfer because
> they either don\'t have the right provider or they don\'t have a
> website they can go to, maybe there is another way that we can promote
> transfer, transferability of a PHR. So you either have to be able to
> have your vendor do it electronically or your provider do it
> electronically or in Word format or be able to push it out. And that
> would maybe even address those who are, you know, pushing this
> responsibility to consumers and say, oh, you know I\'m going to charge
> you \$7 a page for paper. You know, maybe we should be saying here, at
> a minimum, you need to have the basic information. You need to be able
> to push it out in Word document and you need to be able to charge a
> minimal cost only basis. And it\'s not ‑‑ the vision is to go to the
> electronic I think, but I think we are getting closer there. I worry
> about the population that doesn\'t have access to a savvy provider or
> doesn\'t have access to a savvy payer or health plan or, you know ‑‑

\>\> Yes. Yes. Ross.

\>\> You asked the question earlier whether there is a disincentive to
provide portability. And I think there may be in certain circumstances
that. I mean, it is natural that if you make it too easy for people to
leave you, people will leave you anyway. And if somebody else makes it
harder to leave, then that end up with more customers. Now I think it is
part of it is just that it is hard.

> And like we saw in the cell phone industry, you know, nobody jumped up
> at the opportunity to make cell phone numbers exchangeable until it
> was forced upon them. But then the advantage to having it done that
> way is that everybody had to do it ‑‑ it was now a cost of doing
> business. Everybody had to make their cell phone numbers exchangeable.
> And you could not, you know, refuse somebody\'s right to take their
> cell phone number with them. And that was a good, what I would
> consider to be a good role of government intervention if you will in a
> marketplace, to make, to empower consumers. So this is something that
> we could establish in making that a priority, this portability a
> priority which I will note was not on our list of eventuals or now
> requirements.

\>\> Right.

\>\> I think it is something that we should consider, if not for now,
because I could ‑‑ even though I think it is one of the most important
we could do for consumer empowerment is to make sure it is portable, the
data are portable to another one that there are not impediments. I do
think that is a more complex issue than some of the others we are
dealing with. And I don\'t want to stymie innovation and adoption.
Because we are saying before you can get people to take these on, you
have to make sure you can move it the other way. I will use AHIC as an
example.\
I think when they presented to HITSP, and even when they presented here,
their proposal, especially at HITSP, the board meeting, they got a
little bit of a tongue lashing if you will about the fact that they
talked about interoperability in terms of exchanging with other payers.
Not giving the consumer their information or letting them take it
somewhere. And so they said, well, it is always in our intent. We
didn\'t articulate it but it was our intent to make that more fully
portable, but we have to be able to work this out in an environment that
we know, which is we can do this pair to pair exchange using the
standard we know about.

> So, one, can we get portability on the table as a priority, and can we
> figure out where it needs to be in the, in our adoption curve, you
> know, certification thing.

\>\> Eliza. I think portability is so key also. The consumer being able
to have a record that is portable and stored wherever they want and with
whoever, whatever vendor or trace they want, that I think it belongs
more in a vision rather than deciding, can we do it now, can we do it
later. This is something that should drive what we are doing now, even
if we are not capable of providing portability. So I think it belongs on
a different level.

\>\> So with that perfect lead‑in, shall we talk a little bit about the
visioning process? I think we have covered a number of these ‑‑ I think
we have covered the important themes here. We don\'t, you know,
necessarily have answers to them all that we have gotten them out on the
table. And I think, I\'m hopeful that the visioning process will help us
get to that next step. So we\
have ‑‑ so, Kelly, lead us here, but we have several efforts that, kind
of a description of the visioning process and ‑‑

\>\> Kelly: Yeah I\'ll just start off by just giving a couple of
comments to set some context. And I wanted to actually wanted it off to
Paul Tang and Ross Martin because we had talked to the co‑chairs last
week about this exercise and recognizing the importance to get some of
our thought leaders really involved in not only for the leading this
exercise but also because we only have about six weeks to get this done,
actually get some of their thoughts to serve as a baseline for us to
consider.

> But as some of you may know, last Tuesday, at the American Health
> Information Community meeting the secretary and David Brailer had
> talked about this visioning exercise that\'s going to be going on
> across all the work groups that will really help us all to start
> really picturing what our broad charge will look like when it is fully
> realized. So what does a world look like with interoperable,
> longitudinal, patient‑centered, affordable personal health records.
> And given that we have, I guess we could argue in some of ways, one of
> the more challenging charges and it is such a rapidly evolving market.
> We know that we have a lot of challenges at a very early phase in the
> adoption curve to overcome before we get to any kind of real market
> penetration, reaching many of the different segments of the population
> we talked about. We thought it might be quite helpful in particular
> for this group to really have some kind of common understanding or
> common vision where we want to go, particularly from the patient
> perspective, since ultimately we are going back to the fact that our
> group is named consumer empowerment and that\'s what we are all about.
>
> So we, just from a process perspective, thought we would be trying to
> work with thought leaders in the group and those who are willing to
> spend a little extra time on this over the next one to two weeks to
> actually start describing, using a matrix that we just passed out,
> what three stages might look like. Where do we ultimately want to go,
> what does our ultimate vision look like, widespread adoption,
> particularly from the patient perspective. And then what are we, where
> are we right now, which we are relatively familiar with after our, you
> know, testimonies and discussion over the last eight or nine months.
> And then try to capsulize what a mid state might be. So say roughly
> four years from now where will we be and what do we need to be
> thinking about in the ways of enablers and barriers to get there.
>
> So we will be, you know, getting into more definition of, you know,
> what actually will happen over the next three weeks to see this
> through. But we do anticipate for the next meeting that we have, the
> October meeting, to be in person, to the extent everyone can get here
> and, really, use it as a brainstorming session to start to flesh this
> out.
>
> But with that, I\'ll mention that both Paul and Ross have put some
> thought into this already and have a more specific process in mind
> that we could use to move forward on this.

\>\> One of the helpful things for us going into that meeting would be
to get a sense of the, it is a little bit much where we were headed
which is the themes, and try to elicit what people\'s perspectives are.
By that I mean, we could look at PHR as a software product or service
and figure out, what are the critical masses of functionality in that
software product; or we could look at what is the end state from a
relationship point of view. What\'s the new consumer‑patient role,
what\'s the new physician‑health care team role, what\'s the new
care‑giver role and define that and work backwards.

> I suppose we could, another approach is to look at the levers and
> build down a right of way on the lever side. But they are very
> fundamentally different starting places from which to work back. I was
> thinking of an end place to work back. And it would be useful to get
> peoples\'s thoughts, having listened to the testimony and viewed some
> of the products, what\'s most comfortable for you to look at as to the
> end state. End state from what perspective, is it a
> product‑service‑relationship levers, what\'s the group\'s view?

\>\> Programming background at the time, software. I think that as a
programmer, I think you sell, if you don\'t know what it is you are
supporting. What\'s the process, what\'s the business function? And if
we have an end state of what that function is, then whatever product
should support that function. We shouldn\'t make the function support
the product, because I think it will sell because the people aren\'t
going to say well this doesn\'t help me. You are going to be fighting
against the product.

\>\> Yeah?

\>\> ‑‑ crystal, I think five years from now we are going to think, what
were we thinking then? Because honestly ‑‑ but to me, it is always
helpful, put the end down first. What is, what would we all like to see,
you know, and then kind of work backwards. And I think that that might
be more useful. Because personally, for me, I want a product. I want it
just ‑‑ I want it kind of like my Blackberry or my cell phone, but I
want to carry this stuff with me. And I want to be in charge of it and I
want to take it, and if I want to hand it to my doctor. Because keep in
mind that doctors specialize now. Very few people have their one
physician that\'s kind of watching over. So we all have these multiple
providers. So who is this medical person out there that\'s going to take
care of me? I really don\'t see that. I see that I\'m going to take care
of me, using different physicians.

> And so for me, I would like to see the end result being this wonderful
> product that I think ‑‑ and how we get there, well, you know, but
> right now we are into the baby steps, I think.

\>\> The internists would be unhappy with that view because they want to
take care of you.

\>\> I know.

\>\> But it is true for many people.

\>\> Yes.

\>\> Other comments? U‑huh?

\>\> I do think though it is important to keep in mind how this, the
personal health record is really going to be interacting with the rest
of the system. I mean, it doesn\'t have to carry the entire burden of
the electronic medical record, the interoperable network exchange. It is
just one component of a much larger system. And so envisioning, I think
it is important to keep in mind, what is the unique role that this can
play as opposed to trying to make this a vehicle to do everything?

\>\> Mark, do you have ‑‑

\>\> Struggling with some of the same thoughts that I ‑‑ concerned, and
I think this could be helpful because we start to make this the
proverbial Christmas tree where we hang everything on it. And that
really concerns me, and I think we have had a lot of that discussion. So
at least putting it into segments starts to give focus and clarity to
discussion, which is helpful.

> I think I would prefer to look at this in terms of the outcome of the
> empowered consumer, and perhaps we need to be sure that we are all on
> the same page when we talk about an empowered consumer. From my
> perspective, it\'s allowing the consumer patient, family care‑giver
> representative, to be able to have access to the health information so
> that they can manage their health. And if we look at it from that
> point of view, we can look at it in two sort of different variables,
> in terms of how many people are able to actually do that in terms of
> having access to the products but also in terms of looking at it in
> stages. Because one of the other pieces I\'m concerned about is that,
> when we look too far out we run the risk of creating recommendations
> or policy that puts us into that realm of only the perfect is going to
> work. And I think there\'s a lot of things that are out there
> currently, that if we would promote better, we could do better for
> consumers and the care‑givers right now.

\>\> Comments on the phone? Yes.

\>\> You can never beat a dead horse too often so I\'m going to talk
about credit cards yet again. It seems to me one of the reasons why
credit cards have been so successful in the marketplace is because the
back end systems in banks all operate the same way, therefore, they
produce this interoperability. And I wonder if we need to take on, as
one of our tasks moving forward, an examination of the back end
processes and if we can standardize that. And when I say back end, I\'m
talking about how we get the data from the source to the consumer. For
example, health plans. How can ‑‑ do we need to develop or recommend a
standard to capture claims data from all the health plans and Medicare,
and that be the first step in really producing a robust PHR. And I know
there\'s, I believe it is called OMX, might be part of that standard.
And do we want to be looking at that and seeing if, rather than look at
the front end just of the PHR, if we need to look on the back end of the
claims, the data capture side of it.

\>\> I think we have to remember that, I don\'t know that Diners Club
started with it all being perfectly outlined either. But Kelly, what\'s
your thought.

\>\> Kelly: I think as we get more into this exercise we might have a
better sense of how information might flow across the health care
system, I mean in a secure and, you know, confidential manner. But
before we start analyzing sort of what the infrastructure development
might be, I think, you know, building off of Mark and Sue\'s comments
and some others, if we are thinking about ultimately what outcomes or
what interactions are going to change consumers, empower consumers, and
that\'s maybe a decent baseline. And I just wanted to restate, I think
as we have in previous meetings, it is not the role of this work group
to be naming standards. And I don\'t think we need to be overly
concerned with the health IT standards panel is with relationship to any
particular controversy or complexity surrounding one or more standards.
We are really looking at the bigger picture and trying to put all the
pieces together. The policy framework, the social aspects, the
educational aspects. So I think ‑‑ I know that there is an awful lot to
consider within our operability, but that\'s really what HITSP has been
convened to do. And we also have the certification commission that is
something we can talk more about when we get to our conversation around
whether or not we agree there should be some level of certification.

\>\> This is Jay Daniel. I was really taken by the comments about, if a
consumer wants a particular thing, technology, license or whatever, that
they will go through any steps and over any barriers to get that thing
that they want. So I really think it would be helpful to look at it from
a consumer perspective and figure out what is it that will make
consumers want to use it. So the goal is to improve consumer\'s role in
their own health care. Then we need to look at it from the perspective
of, what will make consumers want to use a personal health record?
Because if they are not going to use it, then the efforts are not ‑‑ you
can have the best system, you can have the information interoperable,\
et cetera. But if it is not going to be used, it is not going to be
valuable. So it seems to me that that\'s sort of a really important
fundamental starting point. And that if we can figure out what are the
key elements that are valuable to consumers, that will really drive
consumers wanting to be users of personal health records, that it will
help dictate a lot of the other issues as far as what\'s the right
design, what\'s the important components. Is there information that\'s
important to include or not include, what are the important features, et
cetera. And that\'s really, particularly for Consumer Empowerment Work
Group, that\'s really a fundamental starting point and way of looking at
it.

\>\> Rosemary: Do we not have to ‑‑ it is Rosemary. It seems to me that
one of the lessons, you know, when we market we have to think about a
lot of different people. So we tend to sort of say the consumer, but
there are a lot of potential health consumers in the country who really
could care less about their health. Who are, you know, boy, they are not
looking for a device or a plan to help them do this. They are looking
for a telephone. They really want a telephone. They really want some of
the other things that we can help them get. And I guess, it seems to me
maybe we have to ‑‑ when we vision, we have to think about those groups.
You know, some of it is ethnic, demographic, SCS, literacy, but some of
it is just their relation to the health care system. I think we do want
to get in the people who are not interested because we would like them
to be preventing disease later. But, boy, they are very different. You
know, the chronically ill are quite different from, you know, the young
mother whom you hope to develop good health habits in herself and in her
family.

\>\> It may be ‑‑ to follow up, I think that\'s a really good point, and
it may be valuable to think of a few different categories of consumers
that we think may be likely users of a PHR or maybe even think of the
group that may not be and try to figure out if there is a way to bring
them in. But to try to divide that up and figure out are there different
elements, or are there common elements for all of those that would be a
sure‑fire, yes, you must have that functionality. And then are there
certain ones, and where do we get the best bang for the buck.

\>\> This is Elaine. I agree with a lot of those comments, and perhaps
there is common elements that we can identify across categories. My
concern I would like us to keep in mind is that if we get too detailed,
we will potentially bog down the capacity of people to be innovative. As
we have mentioned before in our meetings, that we really don\'t
understand when these endies or disties tools, how they are going to
want to use them, what they are going to want to see. And so I see part
of our role as providing some of this infrastructure. But then we\'re
saying that HITSP is doing those things. But providing, you know, for
example, saying create something that\'s flexible so you can add data
feeds so that consumers have the capability to look at whatever is
important to them.

\>\> Paul?

\>\> On what you and Jody said, and Kelly, in the sense of divorcing
ourselves from the technology per se, I offered three possible options,
but I\'m going to now offer an opinion, which is provisioning, it seems
like we want to figure out what it is that we need. So in the financial
world, I just need to get services whether I have cash in my wallet or I
can charge, but I want to get it wherever I am. And then other people
figure out what does that mean? It is these teller things and these
interconnectivities. So that stuff is what Kelly said is the
infrastructure and the standards that cause that.

> But from a health point of view, just as an example, I just want to
> get, I want ‑‑ if I am sick, I want someone knowledgeable about me and
> about medicine and patient care to get to me, to avail themselves, you
> know. I want to be able to take advantage of theirs services, wherever
> I am, wherever this befalls me, and work backwards. What does that
> take? Well, I said someone who knows me. Well, all of a sudden I have
> to connect a health care team with my data and the knowledge
> appropriate and can deliver it to where I am.
>
> And then that sort of, an exercise left to the reader. But we can
> figure out even ‑‑ don\'t even, possibly a PHR. I think it is
> probably, there is one probably in there. But what is it that we want
> to do whether it\'s different sort of health, to have happen to us and
> then work back from that. It goes back to the charging. I just want to
> get services and want to compensate somebody to render services to me.
> Somebody else figures out that. And we put on a different hat when we
> try to problem solve and look at barriers and look at policy levers.
> But for the visioning side I think we want to figure out what\'s the
> need that we commonly have and that we want to satisfy, and stop there
> almost, at the visioning side.

\>\> Yeah.

\>\> ‑‑ (inaudible) absolutely, but concerning the consumers are not
monolithic. Right? So it may behoove us to select some segments to use
as thoughtful ways to think about this, the mother/child, the chronic
care, or the family member who is providing care, sort of as ways to
start encapsulate what it is that we are talking about.

\>\> Yeah.

\>\> In fact we have ‑‑ there is so many other workers we are talking
about using specific scenarios for public health surveillance or
different, you know, situations that might really come to, or bring
these issues to light that we could really more concretely describe. So
it would be useful over the next few days we could look for the right
scenario that maybe is consistent with some of our discussions to date.
Share that.

\>\> ‑‑ (inaudible) that is, as you look at these segments, on different
populations are willing to make different trade‑offs. And I think
that\'s an important doctorate here. People with chronic conditions will
accept a greater risk of privacy ‑‑

\>\> Yeah.

\>\> ‑‑ log. They will except a greater risk of having a number of
scenarios come into play that other people will not. While a mom who is
taking care of young children will be very assertive. She\'s probably
not going to take much risk with her child or children. And that starts
to give you some ideas of how you sequence and also what modules will
work within those populations.

> One of the reasons we are partnering with AHIC and the health plan on
> a model that is based on data from health insurers, which we have seen
> all along is something that a lot of consumers do not want, is because
> for that population, people with chronic conditions, the benefit that
> they could achieve with that information outweighs their privacy
> concerns. And so for that segment it makes sense to go down that road
> to get a large population, major health outcomes, that they can
> achieve overlay. So I think it helps to start to look at this in terms
> of the sequencing, what populations would have what products and how
> it evolves.

\>\> Jane? Yes, Christine ‑‑ sorry. I\'m just reading.

\>\> Identity theft going on right here.

> \[LAUGHTER\]

\>\> Christina.

\>\> I guess this has triggered as real strong point for me and that is
privacy and security. And we certainly have heard that in a subtext in
so many of the presentations and discussions we have had today. Coming
away from this conversation and being at this table for the first time
today, I\'m curious, is this a issue that merits our consideration in
the subgroup for recommendations going forward? Are we just simply
confident that this will be dealt with adequately within other venues,
or is that ‑‑ where is that in the ‑‑

\>\> ‑‑ (inaudible) extensively in the last nine months, and the
deliberations have feeding into the newly established confidentiality,
privacy and security work group, they are going to take over a different
set of issues over the next six months to a year. They\'re starting with
identity proofing and authentication, but will move on to other, you
know, that related to patient control.

> So we have to be mindful of whatever comes up in this work group, and
> the context needs to be communicated to the other work group. But
> essentially the other group is being charged with taking on these
> issues.

\>\> Consumer empowerment tool is ‑‑

\>\> Yeah, we do talk about it ‑‑ yeah.

\>\> And if I can just add to that. I\'m heading up for ONC, that work
group. If there are issues or concerns or, you know, particular
positions that are being raised in this work group, what I would
encourage is for this work group to sort of refer them over to the
confidentiality, privacy, security work group so we could factor that
into our discussion. So if in fact there is somebody that testifies on a
particular topic that this work group thinks is interesting and should
help feed discussion over there, that we would ask that this work group
sort of forward that on, that information on so we make sure we take
advantage of whatever is discussed here.

\>\> Should we ‑‑ Ross, do you want to talk about that?

\>\> Yeah, I\'m not sure ‑‑ I can\'t believe that I\'m the one thinking
about, how are we going to fill out these little boxes because I\'m
usually the one talking about the vision statements and all that. But we
do sort of have this task before us about how are we going to articulate
the vision for consumer empowerment in a way that\'s digestible up the
food chain here. And this is a tool that has been generated not just for
us but, I understand, for all of the work groups. I think we have a
little bit of latitude in maybe adapting this for ‑‑ if we don\'t think
this is the vehicle for articulating what we want to say, then we can
modify it to some degree. But I think the end, at the end of the day or
at least at the end of mid October ‑‑ what is the date that we have to
have this ready?

\>\> Well, it is October 31st we will be presenting, actually Rosemary
and Nancy will be presenting to the secretary our recommendations around
priority areas or our clumps, as we might call them, but this will be
packaged with it. So we will be able to articulate how we think this is
all going to fit together over the next 10 years or so.

\>\> I think the technical term is lumps but ‑‑

\>\> Okay.

\>\> Focus and splitters. Lumpers and splitters.

> One of the ways we can do this, and obviously we are not going to
> start filling it out today, but we do ‑‑ there is ways you can do this
> by committee, and you can do this where you have this white board and
> blank slate and say, what are we doing, and just try to work it out
> that way. Or we can also opt to kind of take what, the collective of
> what we are doing, assign a few people to beat out ‑‑ well, they used
> to be called straw men, but I think straw dog might be better because
> it is less gender specific. So make a straw dog, and now let\'s throw
> things at it and change it. And I guess I want to hear first, do
> people have feelings about that, and how we are going to get to having
> a product ready for ‑‑

\>\> Ross, I\'m not sure that I understand exactly the wording of all
this.

\>\> Yes.

\>\> I think that might be helpful to kind of explain it. For example,
interaction with the health care system. I mean, if that\'s a
preference, I think integration is better than interaction. You know.
And I mean ‑‑

\>\> I think this is just something we all need to have a conversation
about. Is this the level of information we want to be brainstorming
around? I mean, this builds on what Sue, I think, was mentioning before.
If the PHR is just one tool in a health care system over the next 10
years is going to become increasingly electronic and the way that we
coordinate care, the way that we communicate with our health care team,
the way that consumers will have access to evidence based information
that\'s very specific to their personal characteristics. All of those
interactions could be described in the context of this larger, more
transformed system, where the PHR has maybe different roles as an
enabler but it is only one piece of it.

> So we, as long as I think we could talk a little bit about what these
> all mean to us, I think we might have more of a common understanding
> of what we think we need to be describing to paint this picture.

\>\> So the prints of the pictures that are common to all the work
groups, we\'re all going to thinking about where we want to be in 2014,
where we want to be in the middle, where we think we can go pretty
quickly.

\>\> Right.

\>\> Rosemary: And then in terms of what we are ‑‑ and we are obviously
going to think about the assumptions and barriers and enablers and when
we should get there. The parts for us really, are these tough parts. So
these are specific to us from the patient perspective and because
anything that is relevant to the patient who is our consumer, has
implications, then we have this other section.

> So work groups will also have implications for key stakeholders.
> Right? And we will be figuring out what we think a health care system
> should be from the patient\'s perspective that, for example,
> interaction probably has chosen as a broad term because integration
> might be the desirable end, but maybe you don\'t have integration at
> the beginning. Is that ‑‑

\>\> Yeah.

\>\> ‑‑ is that sort of ‑‑

\>\> ‑‑ (inaudible) different level. There may be only some areas in the
country where patients and doctors can e‑mail each other, or they can
share information, or there is only certain number of PHRs that have
some level of portability where they can interact with the health care
system by sharing their information, but I think ‑‑ Paul, you probably
put more thought into this.

\>\> You are on the right track, in the sense that it\'s only the top
level, top row we are interested in. And I think one of the questions
is, what kind of descriptions does the group feel should belong in the
top row. Is it ‑‑ so Kelly gave an example that you have access to
evidence about treatment options that pertain to me. That\'s a future,
that would be an example for me of a future state description. Then we
figure out, that\'s what consumer empowerment is all about. There is
information in support of that, but I think this is a Consumer
Empowerment Work Group that describes the future state of what it would
feel like.

\>\> But that, but it might be bigger. I mean ‑‑ so that\'s access to
information about things, you know, that\'s one thing that you might
also want, convenience and interaction with your physician.

\>\> Exactly.

\>\> Rosemary: So there could be a number of things you put in there ‑‑

\>\> Exactly.

\>\> Rosemary: ‑‑ so there is many components.

\>\> So that\'s the level of description. So wherever I am, that\'s
another component of future state where I have control and power to do
things. So one of the limitations of the forum is that it doesn\'t show
that you have multiple components. It is not just one thing. But are we
describing that future state of interaction with the health care system
or are we describing a product? And I would argue, let\'s stay with the
state, with the state of ‑‑

\>\> What it can solve.

\>\> ‑‑ with the consumer. Yes.

\>\> I think ‑‑ (inaudible) ‑‑ what we are trying to do for the
different states. I think it might be something like when we envision
the future state, what we expect; and when you have the beginning state.
Like, for instance, if we were to go back to the cell phone analogy.
Five or 10 years when you used the cell phone maybe your initial goal
was, I get X percent of contact with whoever I\'m calling X percent of
the time, and that\'s acceptable. But today it is not acceptable to have
a dropped call ‑‑

\>\> Can you hear we now?

\>\> Right. You don\'t want to be that commercial. I mean, if I had a
phone service that I was saying that, I would change my phone service;
whereas five or 10 years I would have said this is acceptable because I
don\'t have to go find a pay phone somewhere to make a call when I\'m
not at home. But now I want, the reliability expectations now for my
cell phone is much higher than it was five years ago. So as we are
looking at the PHR, I think it is the same thing, where in today\'s
present state what would be acceptable and what are the successes for
the current state. What are the successes for the middle state, and then
what is the, you know, essentially the long‑term goal but we\'ll pass
that later.

\>\> And we will understand that we won\'t be able to think about all
the things that could be in the future because it will be better
hopefully than we will envision now because people will think of
things ‑‑

\>\> Right.

\>\> ‑‑ but kind of the best we can figure out.

> Robert, did you leave?

\>\> Really is trying to ‑‑ (inaudible) ‑‑ consumer empowerment for our,
you know, the personal health record use case space is to better define
what was an extremely general statement that started this whole thing,
which was the executive orders and the goal of saying we are going to
have electronic health records for half of all Americans by 2014. Well,
what in the world does that mean? I think this is the exercise of trying
to define what that is. And what are some targets, milestone targets,
first defining that end state and then kind of stepping back and saying,
where are we now, and what\'s a mid point. Where should we be around
then? And obviously these are not going to have, these are not mandates
this is not in the form of regulation. It is not a forced thing. It is a
‑‑ if we are here at 2010, this is a pretty good indicator that at least
we seem to be on track or if we are not on track or we are ahead of
schedule. That\'s why I think this is a valuable exercise, because
without defining it a little more specifically, what it feels like in
2014 and stepping back, it makes it hard to know what those expectations
are. And again, it is not a mandate, it is not a ‑‑ these are not out
and out requirements, but they do help people get, what can I expect ‑‑
okay. If everybody is doing their job and I\'m a vendor, should I be
spending all my time right now working on the portability piece of it?
If we have established that as a 2010 must have and say this is
something that we expect everybody to be able to do by 2010 ‑‑ I don\'t
personally think that that\'s necessarily realistic at this point ‑‑ but
let\'s say it is. Then by golly, that\'s what I\'m going to be
prioritizing on.

\>\> Right.

\>\> If it is ‑‑ labs are available and different pieces are there, and
I ‑‑ there is an expectation that there are business models emerging.
That\'s what I\'m going to work on instead.

\>\> Yes.

\>\> So that\'s why I do think it is helpful for us to have them.

\>\> I think Ross captured a lot of what I wanted to say. I think what
would be very useful, I think everyone, you could probably ask everyone,
what is the vision, the end goal? We know the president said electronic
health records for all Americans or all individuals by 2014. But I think
if we can define ‑‑ I mean, my vision is that if you have ‑‑ everybody
has a fully operable health system, where all providers ‑‑ come, medical
records, and all the personal health records then can interoperate. Even
a word with those records, so that information instantaneously is pulled
of all points of care. All providers, all facilities. All your health
insurance information. And the person has theirs and the doctor has
theirs and it can come together. And I think when you step back, first
you need to define what is that vision that we are talking about, and we
have a piece of it that fits into that vision. And then going to what
Ross says of the milestones about knowing where we are now and where we
want to be, and knowing that where we are now is certainly going to
evolve. So certain ‑‑ for example, Blue Cross/Blue Shield, we have
claims data. We know it is not perfect. We know it\'s not the end all,
be all. It\'s going to evolve. But where we are now, at least it is a
perspective across the continuum of care with its limitations. We don\'t
expect that to be the information forever, as we get greater adoption
and more clinical information from clinical and electronic medical
records come in. Then that will change. But I think we really need to
step back. Understand what the vision is and where we are now and build
from it, and what are the models, and who are those second health desk,
and certainly focus in on adoption. We know provider adoption, we know
consumer adoption of this. And what do we need to get there and what
models can we leverage, understanding those models may change and evolve
over time. But I think that\'s what we really do need to look at, the
future, who is there and set some milestones of what we need to get
there.

\>\> Mark?

\>\> I don\'t disagree with the direction we\'re going, but I want to
point us in a slightly different direction and gauge your reaction. But
I have concerns over the notion of everybody is going to have electronic
personnel records as of a certain date because those records may be
absolutely crap and may not achieve any real outcome for the consumers
or, from their viewpoint. Now, ideally that\'s not going to happen but
that could be a potential. So I think we have to look at it in a
different way. And certainly from the perspective of people with chronic
conditions, there are three things that are very important to them. They
want to be informed. They want to be respected. And they want to be a
participant in an integrated health care team. They want to be part of
the process.

> And electronic personal health records have the ability to get us from
> where we are now to a point where patients have information. With that
> information comes power, allows them to be a respected participant.
> Allows them to be part of the health care team making decisions for
> themselves. I think if we start to look at it from that perspective,
> that gives us an end point. And then you start to look back at what
> are the milestones that get you to that point.
>
> And then that really puts ‑‑ and I was using language as, among health
> care professionals. But those are the aspects when you work with
> people with chronic conditions and do polling and you start to test
> this, these are the things they want out of the health care system.

\>\> And I guess the ‑‑ so one reaction to that is that ‑‑ so I would
certainly agree that that\'s the kind of health care system we want. And
I do think that the combination of electronic and personal health
records can really have an enormous impact. The current system to help
get it there ‑‑ because I think they have the potential to make things
more transparent. They have the potential to provide decision support,
information for the patient for ‑‑ decisions for the patient, but also
decision support for the physician and the other care‑givers so ‑‑ but I
think, of course they are not all there is to it. So I think there will
be a lot of work for all of us, you know, the National Health Council
members and everybody else. Even if those systems could be wished into
place this instant, there would still be a lot of work to do so ‑‑ but
there would be less than there is now because now we don\'t even have
the information. So I think that that is a grand vision. And insofar as
these could get you there, I think that\'s a, get us there, that\'s a
great thing.

\>\> ‑‑ (inaudible) ‑‑ health care in a way that we would never been
able to achieve before.

\>\> Yes, that\'s ‑‑

\>\> And I think if we start to look at it from that perspective, we are
really gets get it from the lens or eyes of the consumer, or at least
looking at the population that I work with, people with chronic
conditions.

\>\> ‑‑ (inaudible) ‑‑ I agree, and I have something we could ‑‑
(inaudible) ‑‑ all of this continue. I want statements to really get at
to Mark\'s point, what the consumer really wants. And then as a second
step, talking about what is the steps need to be taken from different
perspectives to get there, and then translating that into the vision
where our group has decided that consumers need this. But I think just
in terms of being able to communicate among ourselves, focus
perspectives in filling out this would help using the I want. I am the
consumer.

\>\> Rosemary: So, Kelly, just give us a little more on process here and
the, and how we are going to do this for this visioning process.

\>\> We have two options on process. We all have been asking you to
commit a lot of your time outside of your normal jobs in general to
attend these meetings and to do ranking tools and background reading and
all kinds of stuff. So one option would be for Ross and Paul to work
together over the next two weeks to take everything we learn today and
then all our previous meetings, and try to start with the I want
statements from the consumer perspective, or ‑‑ and then we will feed
that into the planning of a four‑hour brainstorming session, where
we\'ll really start to flesh this out, and with much greater detail fill
in this chart and even start to perhaps even sketch a final picture of
what this looks like.

> The other option would be to actually, you know, whoever has the time
> over the next two weeks and is interested in engaging on this
> exercise, to work with Ross and Paul and try to have a small group of
> us work on prepopulating this to describe what the end state is from
> the consumer perspective initially and then starting to flesh out what
> some of the implications are for the other stakeholders.

\>\> I would certainly welcome anybody ‑‑

\>\> Yeah, right.

\>\> If you want to fill in the blanks. And the only caveat, or thing I
would change for what Eliza suggested with I wants, is building on
Paul\'s presentation about the I want verses I love. You know, I would
like to see it, about the informed consumer or the one who has
experienced something and they go, now I know what I\'ve got. I know
what\'s valuable. It is not just theoretical. So that\'s the only caveat
I would say, you know, this is what I love and this is what I can ‑‑

\>\> We can do the hooks later.

\>\> Yes. Yes.

\>\> (Inaudible).

\>\> Lorraine?

\>\> Well, I just wanted to add, because I offered to send something to
Ross, that we also ‑‑ I think a number of people have said it ‑‑ have to
do the seven habits of highly effective people, start with the end in
mind so that it is something we probably can\'t really envision. The
concept of a personal health record may be gone in 10 years because we
are going to have access to all of our information ubiquitously. It\'s
just going to be there. There won\'t be a separation. We\'ll have our
piece of it. So I think we probably can\'t, like Bill Smith was saying,
really envision what it is going to be like in 10 years, but at least we
start with this end state, which I\'ve written and I\'ll send to him and
he can stick it in.

\>\> Yes, I think we mentioned that up front, we\'re doing that across
all the work groups. And it just seems like the easiest place to start
because it\'s the ideal. It\'s where we want to be. And it may not be
completely accurate. Even if we are 2010 we may look for it and say, oh,
nowhere near where we\'re going to be because the technology involvement
is such a different place or whatever our circumstance is. But I think
that\'s definitely our, going to be our step number one, to try to
describe that first. And probably where, where we will start our meeting
on October 12th is really, you know, taking, based upon the input that
you all have given, starting with that description and working
backwards.

\>\> Rosemary: Okay. Well, let\'s ‑‑ I think that\'s good. I think we
let, we let Ross and Paul do it with as much input from people as they
‑‑ I think there are things people feel very strongly about and want to
be sure in there, and they will send those to you. And you know, you
will build a straw dog and we will all throw mud at it on October 12th.
Okay.

> So ‑‑

\>\> (Inaudible).\
\
\>\> Rosemary: So in terms of any other action items we need to touch on
for today\'s meeting. So in, you know, one of the things we came away
was last time was people felt they had not quite gotten enough input in
terms of testimony. We have gotten more testimony. They wanted ‑‑
everybody wanted, people wanted to see the products more. We have had
opportunities to see the products. Are there things that we feel we are
missing still, or have we done a pretty good job on getting that
together? We have heard from a lot of people.

\>\> (Inaudible) demonstrations helpful.

\>\> Yes.

\>\> How many people were able to do at least a couple of them\
or ‑‑

\>\> Yeah.

\>\> Yeah ‑‑ (inaudible).

\>\> It was good. It was really good.

\>\> Good. Okay. So I don\'t hear any major issues.

\>\> Yes. I would just say, we did hear from folks that we are lacking
in terms of really knowing what incentives work. We have heard from a
variety of people, based upon their own experiences with their products
or, you know, programs that have a certain scope. But it is not like we
have a whole lot of empirical evidence to draw from in terms of what,
how do we really successfully engage consumers over time.

> So I think we just need to be mindful that, you know, as Ross pointed
> out before, you know, we are as about as good as an expert panel can
> get, with the information out there and continuously strive to keep up
> to date with all that as we know, or at least we try to encourage the
> development of the evidence base.

\>\> But I also would say, the one thing we probably didn\'t have time
to really flesh out today, and hopefully we will in subsequent meetings
before December, is to take what we are learning and the themes and gaps
and really start to map out what actions could be taken by a variety of
different people. So while we are not going to be directly implementing
anything, we want to be looking to, you know, all organizations across
the public and private sector and really trying to figure out, based
upon what we have heard to date, what we should be doing in all of these
critical components we have been talking about. So in the area of
consumer engagement and health literacy, what are some of the near term
actions we could be thinking about that various entities could be
taking. Same with the development of incentives and business models. And
I think as we go through the visioning exercise, to the extent we have
time to really flesh out the enablers and barriers, perhaps that will be
a good precursor to that discussion.

\>\> Other items that the group thinks we should be ‑‑ nothing, nothing.
So really, no other action items for today.

\>\> (Inaudible).

\>\> Let other people do all the work.

> \[LAUGHTER\]

\>\> Terrific. Kelly, if you have nothing else, I think ‑‑ are we able
to ‑‑ Kathleen says we\'re not quite ready.

\>\> Meeting schedule.

\>\> Rosemary: The meeting schedule? So Thursday, October 12. Monday,
November 6th and ‑‑

\>\> (Inaudible) ‑‑ meetings.

\>\> The October one is a ‑‑

\>\> Longer ‑‑

\>\> ‑‑ is certainly at least a four‑hour section.

\>\> Actually I know that Paul has a conflict, I think it is a flight
issue. He is one of the couple of people that are based on the west
coast coming here. So we were contemplating moving that from 11 to 3. I
don\'t know how folks feel about that, or whether or not they have
things blocked off on their calendar. So perhaps we will follow off
after this meeting, just get a vote on what would work for both the
December date and an earlier date on the, an earlier time on the 12th to
see if you all could make that and also mentioned ‑‑

\>\> Earlier.

\>\> I\'m sorry, an earlier timeline. So instead of 1 to 5 on the 12th,
we might say 11 to 3. And then we can also hopefully give enough
heads‑up that we would like to actually have people who are DC based,
and those who can travel, to come here in person because I think it
would be a lot easier to brainstorm in person.

\>\> Yeah. Is that a proposal, to move it to 11:00? Is that ‑‑ on the
12th?

\>\> Yes, it is tentative. I mean, if you all don\'t have access to your
calendars now, we can just send out an e‑mail afterwards to try to
confirm the best time for folks.

\>\> ‑‑ is there going to be a call November 6th?

\>\> That was scheduled, I believe, wasn\'t it, from our original time
frame? I think it was.

\>\> As a call?

\>\> Yes, as a call. And I think we would probably be trying to figure
out recommendations we would like to advance in December in that
meeting.

\>\> Do we have ‑‑ (inaudible) on the agenda, we are going to talk about
December, some date in December.

\>\> Yeah. I think we had a tentative date in mind. We will propose that
perhaps we should propose a few dates since there will be a lot of
people busy around that time of year. And we are not talking third week
in December. That\'s for sure. Probably talking about the first or
second week.

> And realistically if we do want ‑‑ I mean, in some offline
> conversations in our break, it sounded like people did want to
> actually want to the point where we advance some recommendations to
> the community in December because we have heard a lot of it over the
> last six months, and we are afraid we might lose some of it if we
> don\'t move on some things we have agreement on. So if that\'s the
> case, we may want to lean towards the first week in December because
> the community meeting is the second week in December. So we could be
> working on finalizing recommendations in that meeting.

\>\> Want to ‑‑

\>\> Yeah, we will follow up on all that. Yeah.

\>\> Calendar and ‑‑

\>\> Okay. Thank you, everybody. This was really a terrific day. Lots of
good thought. We are sort of getting to know what each other thinks
about things. Very helpful to, just to get together, I think, for those
of you who have been together for longer. Terrific. Well, thanks very
much. We will adjourn this meeting.