American Health Information Community

Consumer Empowerment Workgroup Meeting

April 25, 2006

1 p.m. EDT

**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.*

\>\> Operator: The public is in.

\>\> Matt: Kelly, do you want to begin with some opening comments?

\>\> Linda: I\'ll be glad to start. This is Linda Springer. Nancy

Davenport‑Ennis is not able to be with us today. Gail McGrath, I
believe, is here, and we are going to try and have an expedient meeting
today and we welcome everyone who\'s joined. There ‑‑ we have with us
obviously Kelly Cronin and Kathleen Fyffe, from ONC. And I want to thank
them myself personally and on behalf of the group for their work in
organizing and operating the subgroup discussions which have been very
fruitful in helping us to move along to our target date of submission.
And is Katy Barr also here?

\>\> Katy: Yes.

\>\> Linda: Okay. I want to acknowledge Katy Barr, who is the new
Director of the American Health Information Community. So everyone
should make note of Katy\'s presence on the call and her continuing work
in the director position. At this point, I\'d like to ask staff to take
the roll call, please.

\>\> Matt: Sure. Calling in right now in addition to our Co‑chair is
Gail McGrath and Linda Springer, we have Anders Gilberg representing the
American Medical Association, Linda Rosenthal representing NIST. Josh
Lemieux who I believe is with David Lansky, Daniel Green from the Office
of Personnel Management. David Lansky from the Markle Foundation.
Lorraine Doo from CMS. Mark Gingrich from RxHub, Charles Safran from
Harvard Medical School, and I believe that\'s it. Is there anybody
called in on the phone whose name I did not read?

\>\> Joseph: This is Joseph Martinez. I\'m representing Lieutenant
Colonel Davette Murray.

\>\> Matt: Thank you. And I believe we have a few members of the
Workgroup at the ONC Building, if you would like to introduce yourself.

\>\> Rob T.: Rob Tennant, with the Medical Group Management Association.

\>\> Kat: Kat Mahan, SureScripts. And I think that\'s it on this end.

\>\> Matt: Okay. And I made mention of this earlier, but in case we have
any late joining members, we\'re not using a queuing system today to
make comments so you all have an open line and you can speak when you
need to. Please keep your phone muted on your end when you\'re not
speaking and when you do have a comment to make please introduce
yourself first so we know who\'s speaking. The members of the public
listening along, as always, we will leave 5 or 10 minutes at the end of
the meeting for you to call in with questions or comments.

\>\> Linda: Okay. Thank you. I want to talk a little bit about our
meeting agenda and our desired outcome today cause we are at that stage
where we need to be moving to actual outcomes. And we\'ve had a lot of
time, both on these general calls of the Workgroup and interim meetings
to really hash things over and this will be a good group to hear from.
The subgroups on the work they have been doing and for us to really
listen carefully to those proposed recommendations, hear their reports,
discuss the recommendations, and either accept the recommendations,
propose summary visions as appropriate and ‑‑ but to discuss the
presentation that will be made of the recommendations to Secretary
Leavitt. We will also have an update by Blue Cross Blue Shield and the
Markle Foundation on some research from the breakthrough project. That
will be done by David Lansky and Justine Handelman. I didn\'t hear her
name on the call. David is with us. So we\'ll have that update as well.
We\'ll be discussing next steps and our timeline, our assignments for
making our recommendations to the Community by May 8. That\'s item seven
on the agenda. Obviously, we\'ll have some time for public input before
we adjourn, but this is really ‑‑ the goal today is to take the
recommendations from the subgroups, think about how we could refine
those, and then talk very specifically about the presentation. Because
once we leave this meeting today, the idea will be that we are in a
packaging mode, if you will, targeted toward developing the presentation
materials and the letter, the final letter, of which we have a draft
that was sent out in advance, but that final letter with the slides that
with the help of the Community, we will be able to ‑‑ or with the ONCHIT
\-- that we will be able to present on May 8. So that\'s our agenda for
today, and my job will really be to be a facilitator to a large degree,
keep us on track, and make sure we accomplish all those things.

\>\> Kathleen: My name is Kathleen Fyffe. We\'ve got some more folks
that just joined us.

\>\> Linda: Since we haven\'t really started yet in the presentations,
could we have their identification?

\>\> Justine: This is Justine with Blue Cross Blue Shield.

\>\> Linda: Great.

\>\> Rob K.: And Rob Kolodner from VA.

\>\> Linda: Okay. Very good. All right. Why don\'t we move to the item
which is #4 here, which is review of action items from the last meeting.
That last meeting was held on March 20. And at that time there was
discussion of a preliminary set of guiding principles that had been
developed back in late February. It seems that there was pretty good
consensus around those principles. So those were things that we talked
about, is there any need for further discussion on the guiding
principles? I don\'t think there is. I think we have closure there. And
they are incorporated into the recommendations. So if there is anything
that could come up in the normal course of presentation of the
recommendations. There was discussion of the HIPAA applicability and any
limitations related to personal health records that might derive from
that. There was discussion of methods and means for the Workgroup to
achieve our goals of meeting the submission requirements, concrete
submissions, and concrete recommendations to the Community, for their
consideration at the May meeting. We agreed also to a time‑line that
would get us to that May eighth point. And again I want to compliment
the subgroups and everyone who has been working intently to keep us on
that track. We\'ve made a lot of progress as we can see in the materials
that we got.

Consensus was reached as I said that there would be the three subgroups
that would take all of the work that we have been doing in a general
sense and get those into a formulation of recommendations. And those
three areas, as you can see, as you know from the agenda and from what
was said, focused on interoperability and policy and education. So those
subgroups have been meeting regularly since March 20 and have submitted
their reports, and we\'ll talk about those reports in the presentations
today.

The draft letter has been developed for Secretary Leavitt. It\'s in the
briefing materials, and hopefully we had a chance to look at that.
Before we get into the subgroup presentations, though, we do want to
have the update by Blue Cross Blue Shield and the Markle Foundation;
that is, item #5 on the agenda. So we have ‑‑ we have Justine on the
line, and we have Dave Lansky on the line. So I\'m going to turn it over
to both of you to ‑‑ for that presentation.

\>\> Justine: Okay. Hi, David. I\'m in the room here.

\>\> David: Okay. Well, Justine, why don\'t you go ahead and I\'ll go.

\>\> Justine: Let me just first start off that after, I guess it was
maybe the last meeting we decided two things were needed and I know
David and I talked about it and tried to work on it. One was to do some
research with consumers on what is the most valuable aspect of a PHR,
what tools would be useful, in general, what would they use and then
also focusing specifically on the medication list and what would be
useful, what\'s currently being done in the market. And I\'ll turn to
David on the medication list, \'cause he took the lead on that, but I am
looking at ‑‑ I was worried I wasn\'t going to have data, but I did get
just yesterday some data from research that we did, so let me report on
that. I don\'t have anything I can hand out. But what we did was and
this was in ‑‑ Linda, you\'ll probably be interested in our Federal
Health \-- I call it the Federal Employees Program in our office \--
Federal Employees Health Benefit Program. We did a market analysis in
that population and went out in five cities and had surveys (inaudible)
to 483 FEHBP subscribers. And this included not only including Blue
Cross Blue Shield but also non‑Blue, and there was a variety of
settings, HMOs, PPOs, and other insurance products. And basically, it
was designed to determine consumer perceptions and preferences with
health IT with the specific focus on a personal health record. And I
think we have some of interesting findings and some good findings, and
you know, some surprisingly, you know, good findings, I guess, in a
couple of areas from our perspective, but I\'m just going to, at a high
level, fill you in on what we\'ve learned. Seventy-two percent of those
in that 483 focus group/surveys group, they said they would probably or
definitely use a PHR. And when you look at those numbers, 45 percent in
the probably, 27 percent in the definitely. So I think that is a pretty
good number.

Twenty-right percent said they would probably not or definitely not use
a PHR. Twenty-one percent were probably not. And 7 percent were
definitely not. And then 64 percent of all those said that the ability
to carry the information around on a smart card would be highly
desirable. So not just having the access, whether it\'s through a Web
portal or the Internet or being able to download to a printer but, you
know, just like we have on our credit cards, that smart strip you could
carry to your doctor\'s office, or you would be able to update it on
your own computer and have it.

In terms of what the consumers saw as the most valuable benefit of
having a PHR, what we found is that PHRs in the groups that we surveyed
were popular for centralizing their record, for having a central place,
if you will, to keep all of their health information. That was the
number one reason. The second reason was it empowers them with health
information, and then I guess I was a little surprised at the bottom two
in this were ‑‑ the third was helping me take control over my health
care and the fourth, helping me coordinate information among my family
and providers. That was less of a benefit. They really saw overwhelming
most benefit of having all that information in one place.

\>\> Linda: Did you give them the choices or did they just volunteer
what they perceived as the benefits?

\>\> Justine: They had drop down lists of what they could use.

\>\> Linda: Okay.

\>\> \[Female voice\]: Justine, what was the age range of the focus
group?

\>\> Justine: (Inaudible) and I wasn\'t the primary researcher. So I\'ll
see if that information is here and if not I will go back and get that
for you. Okay. I do have some of that. Hang on one second. Cause I have
only had a short period of time to review all of this. I know I\'ve read
it because it was broken down, there were retirees, there were young. It
was across‑population. Hang on. Just give me one more he could. Sorry I
didn\'t write that down. All right. I\'m going to turn it over to
someone ‑‑ let me see. Okay. Well, I don\'t ‑‑ let me get back to that,
if I can.

Okay. So I will get back on that.

The other ‑‑ another question is we asked folks to rank in order of
obviously we had a number of options but for them to rank what do they
see as the most valuable aspect of a PHR. And what came out number one
is having a medical chart with a summary of doctor visits and lab
results. Second most important aspect of the PHR was having the
medication history. Third. Wellness information, which was
immunizations, vaccines, appointment reminds. The fourth was personal
profile, name, address, insurance benefits, that type of information.
And it says the claims history and in this claims history isn\'t the
medical information in the claim record, but it\'s really a history of
payments to the provider. What the provider paid, if so, how much, and
what\'s the status of that claim.

Then, an area that came out of interest is that the consumers feel like
providers‑supplied information is what they view as most valuable
information that comes directly from their clinician. But providers to
trust also to them to administer. But second, we with health plans were
pleasantly surprised with the insurance carrier as who they would trust
to have administer the PHR. And third was the government and in this
case it was the OPM because it was the population. Third was vendors
such as PHR vendors that are out there and fifth was others.

I asked them also to rate different on line tools of what they find most
valuable and I think not surprisingly checking for drug interactions was
most valuable. Second being identifying health risks.

\>\> Linda: I\'m sorry. I apologize. Could you just go back one step
there for the list of who they trust? Who was number one?

\>\> \[Multiple members\]: Providers.

\>\> Linda: Okay. Thank you.

\>\> Justine: And that\'s who they number one trusted to supply the
information as well as ‑‑ as well as administer the PHR. And number two
was insurance carriers. And providers supplied information included,
both information from the physician, if they had medical records,
electronic or whatever the regular electronic medical record as well as
provider claims was also viewed as valuable. That would be their
favorite way to update that PHR and keep that PHR and how they would
control access to that information. Number one was to have insurance
carriers provide the updates but consumers control the access. Number
two is consumers would update the Web portal and they could also control
the access. Number three would be to have insurance carriers update and
control access and number four the consumers update the mailing whether
it be from a provider or consumer so you could get an e‑mail that has
all of that information and you could go and update it yourself. That
was the most liked way with consumers controlling access. So, on a very
high level, that's what we were able to learn.

\>\> \[Male voice\]: (Inaudible) I\'m on the phone though.

\>\> David: Somebody\'s got an open mike.

\>\> Linda: Please put your phones on mute if you\'re not speaking.

\>\> Justine: And then we did, and it doesn\'t spell it out as much \--
defines who was, of course, on this page but who was asked (inaudible);
give me 1 more second. Technology. Okay. Who we interviewed were active,
retirees, postal and nonpostal, Blue Cross Blue Shield, other Postal
Service, HMO, consumer-directed, and (inaudible). So that was ‑‑ I
don\'t have it broken down by age or how many in each, but I think it
was a pretty wide sample.

\>\> Linda: At the time you look at it.

\>\> Justine: Yeah. And this is still real ‑‑ what I\'ve gotten now is
still really (inaudible) and high level (inaudible).

\>\> David: Can you state again who conducted the survey and who are the
people who answered these questions? Particularly, because almost every
other survey that I\'ve seen hasn\'t ranked health plans anywhere near
second. They\'re generally as you may be aware distrusted by patients.

\>\> Justine: I guess our ‑‑ I\'ll respond that our plans that are doing
this in the private sector have had, I think, some positive responses
from their consumers of doing this. I know ‑‑ I know there are lots of
surveys out there with lots of different things so obviously but I think
this has been alone in seeing that, but this was conducted by Blue Cross
Blue Shield FEP, research and analysis the folks they contacted were in
five cities. I don\'t have the cities listed here. And the folks that
were interviewed included active and retirees, postal and nonpostal,
Blue Cross Blue Shield subscribers, other subscribers, HMO and other
health plan subscribers, they were only focused on those in the FEP
program.

\>\> \[Female voice\]: Justine, can we get a copy of that?

\>\> Justine: It\'s not ready at this point for anything ‑‑ for me to
release any of the details. It hasn\'t even gone to, I think I have a
date on this, May 9th, when it\'s going to go to our internal FEP core
manager, I think. So it\'s just preliminary but I pushed and pushed and
pushed to have something to report publicly at least verbally. And I
have that. I don\'t have the authorization to give out the whole survey
instrument yet but as soon as we get through our internal hurdles I\'ll
certainly see that I get something in writing to you.

\>\> \[Female voice\]: Okay. Thank you.

\>\> Linda: One of the things, Justine, this is Linda Springer, it
strikes me as, again \-- and I think all of our comments for today
should be in the context of what\'s relevant for the ‑‑ the presentation
and the letter that we\'re going to send. So I think that your survey is
helpful in validating with that in mind is ‑‑ validating that a good
population here, I think, \'cause it\'s got a span of ages. You know, if
I hear you right and different types of plans that there is a high
degree of support for using or for having it ‑‑ a PHR that would be
used. And with that 72 percent. And then, when you get into some of the
preferences as to who would be trusted for administering or supplying
the information, I think that is ‑‑ if I\'m not mistaken and someone can
correct me if I\'m wrong, I think that goes a little beyond the scope of
what our recommendations are for May 8th, but ‑‑ and it\'s good
information. I don\'t want us to get too concerned about that part of
it, but rather to view the information you presented as a validation
that subscribers, consumers, which is where our focus is, the consumers
are validating that this is something that\'s desirable to PHR. And you
know, I want to, again, to glean that type of message as being relevant
for what we\'re doing in the near term. And then I think as ‑‑ and
certainly for the breakthrough population I think we\'re looking at
chronic care so there isn\'t anything here that would tell us, wait a
minute. Stop. You\'ve totally missed the boat. Nobody\'s interested in
this kind of thing.

\>\> Justine: I would agree.

\>\> Linda: Okay. We also have Markle. David Lansky?

\>\> Operator: Linda, I think we have a couple more questions in the
room if you want to allow time.

\>\> Linda: There is a little bit of time for that. I wanted to roughly
hold it to about 10 minutes, 10 to 15 for each presentation. So we have
a couple more questions on the Blue survey, that\'s fine.

\>\> Kat: This is Kat Mahan, this is great, Justine, I\'m looking for
the summary points. I wonder if it would also be possible to get some
correlation specific in terms of who wanted or who didn\'t want if
there\'s any demographic or that would either help confirm or negate,
you know, the chronic care population that we want to see.

\>\> Justine: Sure.

\>\> Kat: I would see if we can go back and get that from the survey.
The other thing I mentioned is we want to do a more in-depth focus but
that\'s going to take more time so this is what we could do in a
short‑term and fill that in but I\'ll see what we can get out of it. I
think you\'re right. That would be helpful.

\>\> Linda: Any other questions for Justine? Okay. Now we\'ll move to
David Lansky.

\>\> David: Thanks, Linda. And thanks, Justine, for that. I\'ll just
mention in the outset that we have also done a similar survey to the one
Justine described about 2 years ago, which is available at the
connectingforhealth.org Web site, and our numbers are very similar to
the ones Justine just reported and I think in terms of our data confirms
that there is a substantial consumer interest and we also could do some
of the cross analysis suggested if there\'s I was specific theme that we
want to analyze, but let me turn to the more recent thing we just did
very briefly. This small project came out of recognition that there are
already quite a few online medication list services available to
consumers in the United States offered by PBMs, by health plans, by
retail pharmacies, by independent PHR companies who have created
interfaces to pharmacy data. So our sense was it would be worthwhile to
do a simple informal survey of some of the companies that have been
offering and provider organizations that have been offering this kind of
service to consumers to find out what their early experience has been.
And thinking that might inform our planning within this activity.

So we\'ve identified about a dozen organizations that are now offering
this kind of service to consumers, and we\'ve reached out to have them
but only had a very short amount of time to do that and only six have so
far responded as of yesterday. So this is very high level, and I\'ll
just give you a few quick points. And I want to thank Josh Lemieux and
Darren Nicholson and he is on the phone as well for doing this survey.
We do intend to go a little further and capture some more data, but this
is a sense of it. The kind of questions we were interested in were what
functions they were offering to consumers, what research they may have
done about consumer preferences or actual consumer use and how they were
handling some of the tougher issues like authentication and data
security that we know we have to think about. In our six that responded
to the first pass here a couple were health insurance companies, a
couple were provider organizations, and we had an independent IT vendor.
The ‑‑ in terms of the functions that they offer, and I would just note,
by the way, that given even only in this case offer of this kind of
service to the public today in our survey, each of them has a somewhat
different data source that they rely upon for their data. So there\'s
not an infrastructure delivering raw medication history data in a
uniform fashion to all of those who want to make it available.

So, for example, one of the provider organizations owns its own pharmacy
and it is supplying consumers with data from its pharmacy, whereas some
of the health plans have relationships with PBMs and get the data there.
So there\'s a variation even at the source level. In terms of the
function that is they offer those also vary by organization. Two of the
provider organizations are also able to permit on line drug refill
orders. But the insurance plans we talked to do not allow the consumer
to refill on line.

We also saw in one of the provider organizations that has a substantial
research component that they\'re essentially offering a more
comprehensive more sophisticated service to some of their patients
because it\'s under a research approach, but the generic product
they\'re offering to all their patients has less functionality. So the
differentiation in terms of how much services or features are available
now, most often now the minimum service is to display the list of
medications, but whether additional functions are available varies a
great deal. It turned out the independent health IT vendor that we spoke
with has the most complete and robust set of functions available,
including the ability as Justine just alluded to do drug interaction
checking, to compare drug prices, to put in alerts to remind people to
take their medications and so on, but the customers of this health IT
company don\'t always turn on or enable all of those available
functions. So there\'s an interaction between what the product would
permit and what the sponsoring are organization chooses to enable.

Only a minority of our six samples here allowed the consumer to enter
their own medication information into the list. So in other words the
majority of them only allow the consumer to see what\'s already in the
data base, base, not to add in their own information. In terms of
exporting what information is in the list, exporting it to some other
product or services most of the systems are not able to do very
sophisticated things. One of them, for example, can just allow you to
generate a printed, a PDF document of the list but not actually
manipulated or exported in the standardized fashion. In terms of what
they have done in consumer use, for the most part their anecdotal
references e‑mails from customers who said they appreciate the refill
ability. In terms of the desirability of the service, one of the
providers who offer this to their patients, 60 percent of the people who
have an on line account have used the prescription refill feature. And I
think in a couple of organizations we talked to, it\'s clear that the
refilling a prescription was the most widely used and accessed
capability that was being made available.

And just in terms of ballpark, we have a couple organizations that had
in the 60 percent range of people who had gotten an account, which
obviously is a pre selected group, also and went ahead and began to use
the prescription tools that are available.

In terms of authentication and identification of the accurate user, all
the people we talked to were using a combination of a user name and
password or an ID number and password to be the continuous way of
logging on and authenticating yourself. But in terms of first time
authentication of confirming this is the right person who gets the
account credentials, the most common approach was to let the person
register on the Web site. Then have a verification code mailed to them
by the U.S. Mail. And then use that verification code to go in and
change your password and maintain your password over time. But these
services were not requiring an in-service authentication for the
initiation of the account. They all, however, agreed this is a big
problem and they expressed their hope that this committee or the
Community, itself, would begin to move forward toward a more uniform
consumer authentication process.

So just to summarize, I think what we\'ve seen in this very small, very
brief, quick study, there are a number of people offering the service.
There\'s quite a lot of variability in where they get their data, how
they present their data and what functions they are offering to people.
These are most fairly modest in terms of the capabilities of the things
that we have talked about in this committee and we asked people about in
terms of entering one\'s own information in, exporting the data to other
products, recording adverse events, drug interaction checking, those
kinds of functionalities that are all what we\'re looking for, in
general, from the sample that we\'ve talked to those are not able for
most consumers who have the ability to list. In terms of appreciation
and the anecdotal evidence it is as Linda said a minute ago that the
people where this has been offered there\'s a substantial uptake and a
great deal of interest in it and the management of medications is one of
the primary uses we\'re seeing. So I\'ll stop there.

\>\> Linda: Okay. Questions for David?

\>\> Rob T.: This is Rob and I have two questions, David. One is related
to the ‑‑ you mentioned on one of the provider tools they offered more
sophisticated capabilities for certain people if they were doing
research. That\'s what I understood. Do you ‑‑ was there any kind of
quid pro quo with the users, the consumers, that would avail themselves
of this? That they would be used in a particular ‑‑ in a different way
or an expanded way and as a result they got this ‑‑ access to these
greater features?

\>\> David: Let me see if Josh is on the phone and if he knows the
answer to that question.

\>\> Josh: I don\'t. No. This is Josh. I don\'t know the specific answer
to that question. I didn\'t do that particular interview, but my
understanding is that the institution had a research setting to do some
studying of its more advanced features where before it rolls it out to a
wider population, and that\'s fairly typical.

\>\> Kathleen Mahan: Again, I did respond on behalf of SureScripts to
one of the surveys, because we\'re not, you know, we\'re not an actually
end user application but I look at probably 50, 60 different systems a
year. And we do see a varying degree of couldn\'t figure ability per
application. And user site. And vendors offer that up to end users or to
the clinics to manage how they actually roll out new technology cause
sometimes the big bang approach is not something that the doctors can
really swallow, in terms of talking of getting it into the provider hand
before it\'s ever shown to a consumer, et cetera. So they oftentimes
will introduce like, say, the drug interaction, the formulary
communication, you know, the medication history. They may do that in a
case approach. Most of them do have drug to drug checking. They have
similar types of advanced features but they usually leave it up to like
a clinic or the administration to kind of handle how they throw it at
them, I guess.

\>\> Rob T.: My second question was about the data export issues. Did
you query at all about what the limitations were, the lack of the ‑‑ an
agreed upon template for exporting that? I mean, the technology is not
particularly complicated to do it. There\'s not a lot of incentives.
It\'s a market barrier if you\'re trying to attract people to your
product to keep them just like the cell phone. You can\'t change the
cell phone number, it\'s harder to change cell phone providers, but is
there a ‑‑ do you do any kind of queries about those limitations and
what they would be able to have that function happen for patients?

\>\> David: We did. And Josh, you want to summarize that.

\>\> Josh: Sure, in a lot of cases an installation is going to have ‑‑
the first question is, you know, where is the data going to go? To be
able to export the data into a PDF is a logical thing for probably any
PHR consumer application but in order to send consumer‑contributed data
somewhere there isn\'t really the integration in very many settings to
provide it in a point of care or a pharmacy.

As far as the technical aspects of it, there ‑‑ it is fairly easy to
dump XML out, but each time two different organizations say a PBM is
sending it to ‑‑ or a PHR is sending it to some other institution there
has to be a one‑off integration in most settings. So I think your
question that you alluded to the incentives for where is the information
going, I think right now the marketplace doesn\'t have a whole lot going
on in terms of consumer information going electronically to any health
care institutions in any, you know, wide-scale implementations.

\>\> Rob T.: I was actually asking the other direction. The direction of
"I\'m a consumer and I use a PHR and I keep my medication and history in
it and I want to go to another PHR and I want a copy of all my current
data and I want to move it. In a standardized fashion, not just in a PDF
form that I can\'t reimport into something else."

\>\> Josh: I don\'t know very many more ‑‑ multiple PHR vendors who have
agreements and integrations in order to do that. In fact, most of them
store information a little bit differently, ranging from simple free
text to ‑‑ all the way to, you know, SNOMED-encoded clinical concepts.
And that\'s one of the problems right now is there just isn\'t that
level of standardization or interoperability across PHRs or from EHRs to
PHRs except in the cases where the PHR is directly integrated, perhaps
through the same vendor, the same home‑grown system within a deliver
integrated network such as the VA or Kaiser Permanente.

\>\> Rob K.: This is Ron Kolodner. I think one of the things we\'re
trying to do is create a market that goes forward and obviously as we
look at the NHIN and the contracts that are out there, the activity
between the PHRs, hopefully PHR put another note out there with
activities and standards as other things. I think other than ‑‑ and
since that hasn\'t been there, for the most part they\'ve solved the
problem for different health providers, but I think as we mature those
dangers for moving information and finding it, then, hopefully, that
will attract successful PHR vendors who ‑‑ in that direction and somehow
grandfathering what they have already. But I think rather than expecting
it to be there, let\'s figure out how to attract them to make sure they
will be (inaudible) and I think that will address what you talked about,
if they connect interactively with PHRs, they should be able to connect
interactively with the PHRs (inaudible).

\>\> Justine: (Inaudible) at Blue Cross and Blue Shield, we are working
with AHIC, plus PHR products should be portable and we\'re hoping that
standard by October we have a contract with core data content and it can
be portable, you can go to another you can take that PHR with you.

\>\> Linda: So what ‑‑ now, how will they handle it ‑‑ how will they
handle the variability in output? Will there be agreed upon set of math?
If you want to push it out in HL7 or I want to push it out in XML that
we agree to send it this way, in this format.

\>\> Justine: I think the whole Workgroup is going on, and we have many
other plans involved. And the idea is \-- and they are working at a
standards development organization that would be better ways you would
do it, and there would be some interfaces developed. But there is going
to be pilot testing will be from various carriers.

\>\> Linda: Okay. I think what we\'re going to do here is move on, and
actually, that\'s a good segue into the next section. Before I do I want
to on behalf of the group thank Justine and David and their respective
groups for doing this research and presenting their ‑‑ the observations.

The next section is the largest section of today\'s agenda, we\'ve got
the reports from the subgroups with their proposed recommendations and
here\'s the format we\'re going to follow. Each group will have roughly
half an hour. And what I\'d like to do is have us take ‑‑ from the
presenters take the first 15 minutes of that to present. And then we
would comment. We\'d open up for comments for another 15 minutes on
those recommendations. And then we\'ll go on to the next one.

So that will allow the presenter to go through, uninterrupted for
15 minutes on presentation of the recommendations of the subgroup. We\'d
have questions then immediately on just that particular subgroup. And
then we would finish, for example, with interoperability and then move
on to policy and then after that to education. So that\'s the kind of
ground rule for how we\'re going to do this. And we\'re going to start
first with interoperability. Now, I heard Kathleen on the line. I\'m not
sure if Ross Martin has joined us.

\>\> Ross: Yes. I\'m here.

\>\> Linda: Okay, good. So I\'m going to turn it over to both of you for
the first 15 minutes and then we'll (garbled by overlap) discussion.
(Laughing.)

\>\> Kathleen Mahan: I guess I ‑‑ I mean, I can give an overview. The
recommendation is in the letter. I don\'t know if you want to go through
how we kind of got to where we are and \...

\>\> Linda: I\'m happy to. It doesn\'t matter. I kind of have an idea,
but we may\...

\>\> Ross: I want to start with the first 20 minutes or so.

\>\> Kathleen: Yeah.

\>\> Ross: May be a little bit shaky.

\>\> Kathleen: Okay. I think it\'s basically we\'re presenting what
we ‑‑ what we took away from the last meeting, our group, little
subgroup was focused in on some of the interoperability challenges and
making or helping to provide some thought and to giving a recommendation
that could go into the final letter that we are trying to prepare.

So I think we started down the path of just trying to explore what does
interoperability mean and obviously the first thing that came to mind is
a set of standard. I think you\'ll see in the letter that it said,
"Presented as part of your Workgroup packet." If you look at
Recommendation 1.0, that is one of the first things that we kind of
identified and said, "Okay. Maybe it\'s not our charge to ‑‑ to be the
standard‑setting organization but reemphasize to the Community that
HITSP should focus in on the standard, make recommendations, watch the
emerging technologies and the standards that are evolving." Given that
they should look to also include a higher level of just general
functional interoperability, functional recommendations. And so you\'ll
see kind of the synopsis in Recommendation 1 on page 4 of the draft
letter. It points to Appendix A, where there was some thoughts that we
had put down after a couple of discussions within the group around what
are functional standards. You know, technical standards get down to the
nth degree. What is the technical specification, what\'s the element
level, the SDO that manages. And I think his Bea is taking that into
consideration. So we\'re just emphasizing, stick with them on that path.
On the other hand, there\'s a higher level of functional standards that
we can actually recommend and say to AHIC, "When a standards
organization is taking the technical standards in merriment, you should
also look at functional standards," and the four main groups, if you
will, of the functional standards are some general registration
requirements that each PHR facilitator, if you will, should be able to
handle. So registration, portability and interoperability talking,
about, like, "I want to do HL7, but you want to do XML, and you want to
do (inaudible) separated value." How do they communicate in and amongst
each other so that patients are not, what\'s, you know, patients are
not ‑‑ are not able to move around with the different physical health
records and then sharing with external sources ensuring that there\'s
some level of protection on how that data is being shared amongst
providers, amongst payers, amongst pharmacies, amongst, you know,
additional providers. And the last thing, data quality and some type of
patient resource. In a high level, how does the patient go and if they
notice something on their personal health record that has been supplied
by an external source, do they have a resource, if any? They probably
should. You know, something similar maybe, if you will, in the vein of
the credit Bureau. I don\'t ‑‑ I see this line item. That\'s not me, I
never had that credit card. I was never late on a payment. I need to
have some legal recourse. It may be lengthy, but where do I go to sort
of start that process. Those were the four groups that we talked about
and the recommendation itself was actually summarized, thank you,
someone else did that, into the letter, which just gives them high-level
additional thoughts that the Community should be thinking about.

And that was kind of the summary, I think, Ross, s I\'ll let you take
over.

\>\> Ross: The only other comments I would add is just that this process
that we went through in our subgroups in trying to bubble them up, I
know that I\'ve been telling them "K3" \-- Katy and Kathleen (Fyffe) and
Kelly \-- really did a good job over the weekend. (Laughing.) And before
and just after to consolidate a lot of work products that were coming
out of our group. And I guess the thing ‑‑ I would rather give a lot
more time for responses from the Workgroup, because you just ‑‑ this was
one slice of a very large pool of information that could have going to
lot of different ways, and I think it\'s a pretty good one. Everything
is a matter of compromise about how long you want to make this document
and how ‑‑ what is the attention span of the people who are going to be
looking at this? So there were some choices made, mostly along those
lines about what are the prioritizations? What is the prioritization of
these different points? Not whether they were right or wrong,
necessarily. I think there were just a couple of points where we had
enough, I think divergent views or not quite converged views that we
felt like we had to ask the groups specifically the sort of debate about
this and make some ‑‑ and talk through what a ‑‑ what a consensus would
look like on these, especially Recommendation 1.3, about the nature of
what we\'re going to recommend for a functional model and performance
criteria, related to PHR Certification, specifically.

And so one of the things we might do as we get into this a little bit is
maybe hit that point in particular. And I know, David, you had
particular thoughts about that, and I did. And there were some others.
So you may want to just share those ‑‑ share those perspectives and see
if we can come up with some common ground on that one.

Has everybody had a chance at least to review them prior to the meeting?
I know it\'s ‑‑ they all came ‑‑ you know, this has all been a series
of, okay, it\'s in your inbox and you have to look it over, but did we
all get a chance to kind of make ‑‑ make some thoughts about them?

\>\> Kelly: . This is Kelly Cronin. I need to point out for those of you
who weren\'t participating in either the interoperable or policy
subgroup we did end up blending the two groups of recommendation in this
section because they were very much interrelated. And for example, 1.2
really talks more about trying to figure out a way for us to build more
safeguards into the system for private security. And we had a really
good group discussion on the enforcement authorities that currently
exist. And while it\'s been recognized and talked about that FTC
currently has the authority to do enforcement over private entities,
privacy policies so for PHR vendors they could potentially, you know,
have some oversight capacity over their privacy policies, we also
recognize that the Certification Commission for Health and Information
Technology, which has already talked about Certification in part of its
business plan, while it\'s not in their current contract, there would be
the potential to incorporate privacy and security requirements in a
certification process. If as we get into that that\'s something that the
worker feels should be prioritized or at least there should be sort of a
process for us to get there.

So we wanted to consider these privacy and policy issues together, since
they\'re very much related to a lot of the interoperability issue. So
that\'s more or less how we got to Recommendation 1.2 and why we ended
up putting it in this section.

\>\> Rob T.: Rob Tennant with the MGNA. I have a general comment and a
specific one. The general comment is, a lot of ‑‑ a lot of the
recommendations include some very specific organizations. I would
recommend that we avoid that whenever possible. For example, in 1.2, we
talk about the American Health Lawyers Association. I believe it would
be ABA (American Bar Association) Health Law Section that if the State
(inaudible) analysis. American Hospital Association has done that, the
National Association of Chain Drug Stores. My recommendation in that
type of situation is, I mean, like Federal Trade Commission and other
appropriate entities, because I don\'t think we want to be singling out
especially one that didn\'t have anything to do with State analysis.

\>\> Kelly: Okay. That\'s a really good point. I mean, I think this was
actually talked about in the subgroup, because individuals from the
American Health Lawyers Association has already been informally
discussing this, not the specific issue, but the possibility of doing,
you know, some more additional State-level analysis. So we thought to
potentially consider them as a group that we could work with.

We have ‑‑ I think, as a Workgroup, consider putting forth
recommendations that are specific and actionable and that start to
create some accountability for a variety of stakeholders. So there is ‑‑
it\'s somewhat desirable for us to call out specific organizations if it
seems appropriate, and it\'s not giving them, you know, preference in
any way, but in this situation, I understand your comment. And there are
probably other ‑‑ other legal organizations or appropriate entities, as
you say, that could be considered. I just would like to recommend that
we consider to the extent possible who we can point to, to get certain
things accomplished so that they can then come back to us either as a
Workgroup or at the community level and explain what they\'ve been able
to accomplish.

\>\> Lorraine: And, Kelly? This is Lorraine. On ‑‑ you know, in fact, in
one of our recommendations, I think it probably was in this arena where
I see we did take out names, we had been very specific about some of the
standards organizations and some of the other organizations that have
some real presence? And it looks like we probably took those out? So I
guess it does make sense to be consistent.

You know, call them out where it\'s appropriate, and then let the rest
of it come out after we\'re finished with our recommendations.

\>\> David: A few more comments, as well. In 1.3, I would want to tend
to want to move that first second to be the second part of the
recommendation. The first one is we need to develop the standard. The
next one is, we needed a CCHIT criteria test. To my mind, one follows
the next.

\>\> Kelly: Yeah. I think our discussion here, and this ‑‑ this really
wants warrants a lot more group discussion because even at a subgroup
level we weren\'t I think completely on the same page with this. But we
thought that in the short‑term there\'s an opportunity even before a PHR
functional model or performance criteria were to be developed or
recognized to actually start with the EHR Certification process the
ability to have criteria that would enable exchange of data between EHRs
and PHRs and that\'s sort of a short‑term feasible step based upon some
input we heard at a subgroup level from all of the organizations that
are doing work in this area.

\>\> David: Yeah. Being on the CCHIT, I\'m concerned they\'re not going
to want to add to the criteria until the standard is there.

\>\> Kelly: Right.

\>\> David: For the vendors to comply with them.

\>\> Kelly: Right. HL7 actually has an initiative underway, and they\'re
in the process now of developing consumer criteria for this, but it\'s
really focused on the EHR, PHR data exchange and portability, so that\'s
why we\'d start with that discreet portion up front and then we would
trying to back potentially to consider the development of a full‑blown
PHR functional model, but David Lansky can best express his views but I
think that there\'s not complete agreement that we\'re really ready,
that the market is ready for a PHR functional model, given that there\'s
a wide variety of functions that are offered right now, and it may be
challenging to actually establish a minimum for the functionality for a
PHR.

\>\> David: This is David. Thank you, thank you, Kelly. The second
sentence in 1.3, I didn\'t support. My concern is that several‑fold. One
is that HITSP is a harmonizing body, not a standard development body,
and there are not yet well-developed standards for all these elements
that would be involved in this further development. I didn\'t think a
road map would be the appropriate task for his me to be considering. And
Ross has suggested we think of the task at a high process level not at a
substance level that HITSP identify what process we would use going
forward as additional functions are to be identified to be included in
the model. And I think my reservation as Kelly just said is that even
the phrase "a basic PHR functional model" I think presumes a lot that we
don\'t have agreement about regarding the developments of various
personal health tools. And I think it\'s premature to impose upon the
market some set of strictures which will end up being conservative when
we know so little about what people need and want and what functions are
really desired or have value.

So I have all the structural problem. I don\'t think his me is the right
place to do this, and secondly I think it\'s premature kind of intrusion
in the marketplace concern.

\>\> Gail: This is Gail. David, I agree with you, but let me ask a
question here. If HITSP is not the standard setting, then is there an
organization out there that does that? I guess my concern is this: that
I agree that the private sector should do the developing of the product.
My concern is that is it not the Federal Government\'s role to put the
standards in place for the products that the Federal Government should
say, \"Fine. You should develop the products, but they have to at least
include this.\"

\>\> David: Well, I ‑‑ I think, in broad strokes, that\'s ‑‑ especially
the government as a purchaser, certainly should be able to do that in
it\'s procurement, I don\'t think necessarily given the immaturity of
the national health information networks dictate a minimum set of
requirements, that there probably isn\'t too much agreement about ‑‑ I
mean if we look at, for example, I really thought Appendix A that Kat
summarized earlier on functional requirements was very good. And you can
just even glance at any one line of that and see how much ambiguity and
further development work on literally every single line of the appendix
needs to be done. So I think we just don\'t know yet what the specific
standards, specifications, functional requirements will be in so many of
these areas. And as in my very brief report earlier, even the most
simple concepts like letting a person enter their own medications, we
have no standards whatsoever for that, let alone the challenge of
harmonizing them or specifying the function and the lar‑‑ the more
difficult issues like correcting mistakes that occur across the network,
we have almost zero experience with. So it seems very premature to me to
lay out the road map or the sequencing of those kinds of functions when
no one\'s ever done them at all in the broader community environment.

\>\> Ross: And, David, you already \-- this is Ross \-- you pointed out
your comments from our earlier conversation about the process road map
as opposed to the specifications of what ‑‑ what features and functions
should be prioritized over others. I don\'t ‑‑ I don\'t see that that\'s
a role of HITSP predominantly. I do think you want to process so that
when we recognize things that have gotten to the level of maturity in
the marketplace where we could have ‑‑ we could build consumer
expectations, when they say, \"I have a PHR. And the PHR provider says
that it does ‑‑ it can connect with ‑‑ with other provider
organizations, and will allow me to upload my medication history that
there is a defined ‑‑ there is a definition for what that means and
it\'s consistent. So if two different vendors both say that, it doesn\'t
mean three different things. My family, you know, we eat organic food
and to understand what is organic or fat free or no trans fats. All
those definitions, if those aren\'t nailed down you really don\'t have a
lot of confidence in the consumer to be able to know that what you are
getting is what you think you\'re getting. So that\'s what the process
would should be, and \--

\>\> Gail: (Choking.)

\>\> Ross: And I guess I said something funny. I didn\'t mean to.

\>\> Gail: I\'m choking. (Choking.)

\>\> Ross: Oh. So I would ‑‑ I would still, you know, say to ‑‑ if we
can develop a contention that there is some contest that we can agree to
about ‑‑ if we don\'t do this, if we don\'t establish this framework for
how are we going to move forward, agreeing that the market is young. The
market is not mature yet but it\'s going to mature and the better we can
have a process to establish what is nailed down and what is still a
leading‑edge and what is innovation? And align those consumer
expectations I think the better off we\'ll be. I\'d rather do it earlier
than late.

\>\> Linda: Okay. Let\'s go on to Recommendation 1.4. And if we could
hold comments we\'ve got 10 more minutes, 10 to 15 minutes for this
segment so let\'s get through the recommendations and then ‑‑ and then
more questions.

\>\> Ross: What I kind of like about this recommendation is that we had
some specific times in this, and felt that there was enough difference
between different types of data, you know, whether the medication
history versus your demographic information versus laboratory
information that we couldn\'t necessarily declare a timing for
responses. And so we said that there should be bench marks established.

\>\> David: Ross, this is David. Can you clarify what the word
"industry" means in this recommendation?

\>\> Ross: I don\'t know if that was my word or not, but\...

\>\> \[Male voice\]: (Laughing.)

\>\> Ross: This should be the community. The health care community or
this could be ‑‑ it probably should be more specific, perhaps, about who
we\'re charging with this.

\>\> \[Deep voice\]: Do you mean the vendor community industry or the
health community?

\>\> Ross: (Inaudible) other than the vendor community but including the
vendor community.

\>\> Linda: Okay, let's go to 1.5.

\>\> Ross: Just a quick question on 1.1.

\>\> Linda: We're going to save questions for the end. We\'ll do 1.5 and
all questions at the end.

\>\> Ross: The only question I have about this one is we talk about
pediatrics in the ‑‑ in the descriptor in paragraph four and then we
limit it to product communication and the actual recommendation. I
don\'t know if we want to say including pediatrics or just leave it at
this.

\>\> Linda: Okay. Let\'s open it up for response to that. And comments
on all Recommendations 1.0 through 1.5.

\>\> Rob Tennant: Comment on 1.4 in the paragraph above. And I agree 100
percent with Ross\'s assertion that we should not be putting in specific
time frames, yet we have done so here by saying downloaded to the PHR
within several hours. I recommend changing that to a reasonable amount
of time or a bench marked amount of time. I don\'t think we wanted to
tell them a specific time. In 1.4, as well, in the first sentence of the
paragraph following the recommendation you have: Measurable value for
consumers, patient, family. I think we need to clarify the terminology
here. In my mind the consumer of a PHR is the patient, their family care
givers and providers.

Here it\'s a little confusing, about what term you\'re trying to use
here. And then the last point on 1.4 I have real concerns with using
pediatric as an example, especially for the pilot. For a number of
reasons.

Children tend to see one physician, a pediatrician for their needs even
if they have multiple chronic illnesses. There are guardianship issues
with ‑‑ in terms of privacy and who has access to the record. HIPAA
specifically carves out juveniles, as we all know. So we\'re looking at
multiple State laws. In my mind focusing on Medicare patients makes the
most sense. Plus we have more Federal oversight in the Medicare program.

\>\> Linda: Okay. Let\'s ‑‑ let\'s do this. Let\'s go back, and again,
this group had the largest number of recommendations, this subgroup, so
let\'s go back and make another pass through one more time by
recommendation and call for any other comments that you want to be noted
by the subgroup as they go back and refine.

So first, 1.0. Any other comments on 1.0?

\>\> Justine: (Inaudible) I heard David Lansky say. I know he has some
concerns, too, about the role of HITSP, if it's appropriate for them,
for non-standards development organizations. I wanted to echo what you
said earlier.

\>\> Linda: Can you be more specific with it, Justine, with 1.0?

\>\> Justine: Sure. I think just a concern is the world of HITSP as you
all know is identified standards and then I think trying to some concern
that you\'re not the ones that need to be developing what standards are
going to be used, it\'s kind of like what makes sense across the
industry. I think we just have to be careful of how we charge them to
fit in with what they\'re supposed to do.

\>\> Linda: Okay.

\>\> Justine: And it, you know, if there is a role, at least I know when
we have someone at Blue Cross Blue Shield who is on HITSP that it raises
the red flag of what they\'re supposed to do (inaudible).

\>\> Matt: I\'m not sure everybody heard that. (Inaudible). It's a
little hard to hear.

\>\> Justine: What was that? I was hard to hear?

\>\> Linda: Could you repeat that?

\>\> Matt: The people at ONC are coming through pretty quietly over the
Web so I was just asking if they could really get up near the microphone
when they have a comment to make.

\>\> \[Multiple speakers\]: Microphone is (inaudible).

\>\> Justine: I was just saying that we have folks that are on his me
and we want to make sure that what we recommend makes sense for what
their core functions are to do and their role is as a harmonizer and not
developing the standards of harmonizing and identifying gaps I think we
have to be careful how we word that.

\>\> Kelly: I think that\'s true. I think we remember our previous
Workgroup meetings we decided that HITSP was the right organization to
be naming standards for the purposes of our breakthrough. So we were
going to defer to them to really develop the specifications, which is in
scope with our contract.

\>\> Rob K.: Well, this is Rob Kolodner to pick up on that. The first
one says "Specifications for Core Registration Dataset." I think
there\'s a difference between which data will be used for the dataset
and what the elements are in the dataset and I think those are two
different functions, HITSP certainly could say, "Given the developments,
this is the standard." But the decision about what the developments are,
I don't think necessarily \-- HITSP may, in fact, call on a subgroup of
this group for them to say (inaudible) ‑‑

\>\> Linda: Yeah. In our previous Workgroup meetings, we do get to the
point where we at least \-- we're at a high level about what categories
of data so that the type of data elements that we want or we think were
necessary for a registration summary were agreed upon, and then we also
agreed to go to his me for them to develop the specifications and the
standards necessary for those data elements.

\>\> Ross: And I would just point out for the role of HITSP that part of
the role of our data harmonizer that we have been able to tell and I
work in that area, as well, is if there is a gap to identify where that
gap can be filled. Yes. They do not create standards, per se, but they
do try to direct, say, you know ASTM or HL7 or MTPP. Here is a standard
that is missing that we think you are best equipped to fill. Please do
this, come back with an answer and then we will ‑‑ we will fill that gap
with this. And so, yes they\'re not specifically creating standards,
they are creating, I don\'t know if they have a name for this yet but
"implementation guidance," "integration profiles." There are all
different names being thrown about for this instance for this function;
i.e., these breakthroughs, here is what we\'re naming them, down to what
parts of the standards to you use.

\>\> Linda: Okay. Let\'s move on to the next recommendation, 1.1. Any
further comments?

\>\> Gail: Linda, Linda, this is Gail. Can I just ask one other question
here?

\>\> Linda: Yes.

\>\> Gail: On the ‑‑ if HITSP is not a standards body then I don\'t
understand, I don\'t understand why we\'re going to them. Is there not a
standards body that would be out there that would be better to go?

\>\> Kelly: Yes. Each standard body is its own organization; for
example, I see like three different, you know, today, PHR models
emerging. There is an HL7 standard that represents PHR basic dataset,
there\'s a CCR-PHR emerging standard that represents dataset, and kind
of on to Ross's point, HITSP is involved in harmonization, so they would
be the organization to say, "You know what, PHR standards should have
registration data." Now let me look at CCR. Does it have registration
data? Does it have what we want in a minimum? Great, it does. Does the
HL7 dataset have its minimum dataset? It does. So these are two that
would fit a baseline set of minimal requirements. So each, you know, I
don\'t know that there\'s going to be one PHR standard. There may be
one, you know, interoperability data ‑‑ yeah, what you call it. A
minimum dataset that\'s agreed upon at a high level saying your PHR must
do this. If you might this, then you get a green thumb of approval from
HITSP, and HITSP is not creating the standards but they\'re looking for
those standards organizations that are already creating those standards.
I think.

\>\> Rob K.: And one reason that it\'s not just one standard
organization is that the functions are often very different depending on
what kind of layer you\'re talking about. Is it actual transactions, and
that would be a different named standard than context within in it. So
it\'s not as simple as just picking one standard organization to make it
happen.

\>\> Linda: Anything else on 1.0.

\>\> David: This is David. We should \-- following Rob\'s point, the
little sub-subgroup should take another pass at this before it\'s final
and look carefully at this question of what is charged to HITSP and the
identification of what should be in the content of a dataset from the
election of appropriate standards to support that and not blur them
together as the language does now.

\>\> Linda: I think that\'s been pretty well-noted and when the people
take the comments back, or the subgroups, they will do exactly that.

Let\'s go to 1.1. Any further comments on 1.1 for the subgroup? Okay.
1.2.

\>\> Anders: This is Anders Gilberg with AMA on 1.2. I just ‑‑ I had a
question about how this recommendation relates to the work that\'s going
on under the Privacy and Security Solutions Contract. 'Cause in these
other recommendations we refer to some of the contract work, and I just
wasn\'t sure, you know, if this was redundant or if there was a
relationship with this one.

\>\> Jodi: This is Jodi Daniel. The Privacy Security Contract isn't
really focused on personal health records per se. It\'s looking at ‑‑ I
mean, it\'s looking at a whole lot of different areas and data
interchanges and how privacy and security practices may affect health
information exchange and how their ability in privacy and security
practices may affect health information exchange, but this is really
getting at sort of the group that of PHRs that are often not going to be
covered by a HIPAA clause and that may not be adequately addressed by
the privacy and security contract. So we\'re trying to think about what
other mechanisms there may be for enforcing ‑‑ you know, for privacy and
security practices and enforcing privacy and security practices through
other mechanisms, like the FTC Act, that will enforce against an entity
that has a privacy policy up on its Web site but then doesn\'t act in
accordance with its privacy policy and that is misleading advertising or
misrepresentation and they can enforce against that and whether or not
there may be other mechanisms out there that can be used to enforce
privacy policies.

It is possible that something may come up in the context of the Privacy
and Security Contract, but this isn\'t really a focus of the Privacy and
Security Contract. So, you know, the ‑‑ there is some concern about
deferring to that contract and not really having the right after venue
for getting those answers, particularly when there may be Federal laws
that are affected.

\>\> Linda: Okay. Anything else on 1.2?

Let\'s go to 1.3.

1.4.

\>\> Mark: With 1.4, this is Mark Gingrich. I guess I\'m scratching my
head why we need to have any ‑‑ anything in there about a timely
response. And when it comes down to it, wouldn\'t that be something that
the market will drive based on PHR vendor and data source?

\>\> Kelly: I think this came up in the context of the workers\'
discussion. Gail, I don\'t know if you want to comment on this. We
originally had put in sort of the 24‑hour turnaround time that we talked
about but then modified that, given that we didn\'t have enough sort of,
you know, vetting of specific time frames but yet recognized that it was
valuable to establish some kind of benchmark to ensure timeliness. But
it gets at the issue that you raised over the last few weeks.

\>\> Gail: It does. And I think this is important. And I think that,
again, we have to think about if we\'re going to have a PHR, then how is
it going to be populated? And if it\'s going to be populated, then what
is the timeliness of that? Because if we don\'t ‑‑ if we don\'t consider
this and if we don\'t put something in there, PHRs will go by the
wayside and what we will that wind up with is an electronic medical
record, controlled by the providers, owned by the providers, and that\'s
all we will have. The consumer will not have anything, because the
consumer will not be able to get their information on a timely basis, or
to get it at all. And then, in the end, the consumers will throw up
their hands, and that\'s what I am concerned about. And I think that ‑‑
I think one of you said the other day that even HIPAA has, I think, I
was requirement that people have a right to their information. And I
think there is a time period on there. But we\'re saying that now that
it should be electronic, that that time period could be cut back.

So I think ‑‑ I think that\'s just critical, if we actually are serious
about a PHR for consumers.

\>\> Rob K.: This is Rob Kolodner from VA. At the risk of actually
having a disagreement (laughing) \--

\>\> Gail: It\'s all right. Disagreement is fine.

\>\> Rob K: This is one where I think the timeliness is not the issue. I
think there\'s a principle here and we need to figure out what the
principle is that we need to use to guide us. One, certainly is timely
access. The other, though, is humaneness, because certain ‑‑ one of the
things that we chose in VA was to build in a lag for when the
information gets out, because we don\'t want the person learning about
their cancer or their other disease electronically. We want to give a
time for the provider to be able to get to them. And I think that this
is not a function of the PHR. Again, going back to the level that may or
may not be the one that we end up looking at that is the PHR being anode
on the network and communes with PHRs because many of us get care from
multiple different providers so it isn\'t a link between one PHR and a
particular EHR. It\'s how that electronic health record responds to the
request. It\'s built into the response time of the provider PHR and I
think that does have to balance both timeliness with this humaneness and
what we would all want for the care for our loved ones or for ourselves.
So I think that where the saying is timely. That timeliness, as I say,
is not on the PHR side. It\'s on the response to the request and has to
be valid.

\>\> Justine: Can I add one thing? I will kind of go off and I\'ll be on
the disagreement side, too; sorry, Gail. (Laughing.) I Look at this
particular two points of view. I think the humaneness Rob speaks to I
think is very important. I think that actually makes my skin crawl to
think that my grandmother would find out about a chronic illness via,
you know, the nice little Web site I pointed her to, versus hearing from
her provider, so I don\'t really know where that fits. But I do think
timeliness of response and lack of response thereof is not acceptable.
And I almost think this could be going into a high level requirement of
the standards, you know, saying that a minimum is the response time
shall be thus. Or at I was minimum, the PHR facilitator/vendor should
state their service level or their responsiveness level to the consumer,
very clearly during the registration process. I don\'t ‑‑ I\'m not
trying to say, well, I\'ll let the consensus ride, but I don\'t know if
it needs to be its own bullet, because I think it has to be used in
every single other recommendation, every single area. There\'s a
technical high functional standard of recommendation where timeliness
has to be key within the process, because there ‑‑ say there are 14
different sources of data that\'s putting together this PHR. You know,
then, you know, you have to have downstream effect of how much time are
you giving each one of these players to respond to that and so it\'s
still useable to the end consumer. So, just to finish the thought \--

\>\> Gail: Well, I think we\'re also focusing on the worst case scenario
that someone would find out that they have cancer or something like that
before the provider got to them, but let\'s think about this
realistically, if we\'re talking about widespread use of a PHR, we\'re
not just talking about those kinds of cases. We\'re talking about
whether, you know, you\'re going to get your blood test so that you ‑‑
the information from it, so that you can populate your PHR, that you can
keep up with your health care over time. Most people are healthy, you
know, so the information they get ‑‑ and I have to tell you, this whole
bit about getting information from lab tests before the provider does, I
don\'t know that it necessarily is going to make that much difference in
the future, because we\'re thinking of a provider as the central figure
that is taking care of us. Well, as we all know, providers specialize
now. And for the future will be that we\'re all going to different
doctors. There is not going to be one entity that\'s going to be taking
care of you. So I think that we\'re all going to be getting information
from multiple sources. So my hope is that we will come to some
reasonable solution on this so that consumers will be able to get their
information, and on a timely basis.

\>\> Linda: The one thing I would say here, though, I think that ‑‑ I,
personally, particularly for certain types of things, want to find out
first from a \"provider,\" quote, unquote, who can answer other
questions, who can give me next types of things, next steps, options,
what have you, interpretive guidance so that I don\'t think that\'s what
we\'re looking for the PHR to do. So I think that there\'s some step in
here and maybe we articulate or maybe we don\'t even do this
recommendation by itself, but there should be some step if we do that
says it should be timely after certain communications have occurred or
what have you. I mean, I don\'t ‑‑ in the same why that I don\'t want to
just get something in the mail that says, you know, "good," "bad," or
"inconclusive" or whatever. I want someone to be able to, especially on
serious things, to be able to interpret it for me and answer questions.

\>\> Gail: But that\'s what the recommendation says it should establish
bench marks for ensuring timely responses to consumer requests. So
we\'re not here to sort of lay out those details of what the standard
should be but rather that there should be some based on our discussion
as we develop the criteria around what these PHRs will have and what
they will have in them and where it will come from.

\>\> Linda: Maybe it\'s just a matter of making the language be
revisited to make sure that it comes through, that the focus is not just
on how quickly we can get it up, but that all the necessary steps have
been taken that are preliminary to it being posted.

\>\> Jodi: And one of the steps, this is Jodi Daniel, ‑‑ if this is
going to a PHR vendor\'s Web site you might also need to have
authorizations in place. There might be other steps that need to take
place in advance so an absolute timeline might be difficult. So it\'s
not just sort of the right step from a clinical perspective as far as
having the provider have an opportunity to have deliver the news
personally but also some of the legal issues as well should be, you
know, kind of allowed for in this recommendation.

\>\> Rob K.: This is Rob Kolodner again. Let me suggest the following: I
think the idea ‑‑ the concept of timeliness we agree on, what timeliness
consists of we agree we don\'t have yet. If we\'re going to put anything
with any time frame such as the several hours that\'s here I would give
another one that says, you know, "There may be a delay of up to a week
for pathology results so that you cover or go a period of time for the
provider to have access. You give a range rather than something that
looks like you\'re forcing it to a very short time frame. Even in VA, we
filter, and some of the chemistries go straight immediately and other
ones, HIV results or other things, we treat differently and we build
that delay in, or at least we are doing it or plan to do it in the
rollout, so I think that by giving the one example we push it a little
short rather than giving that balance between the humanness and the
speed.

The other part again is I wouldn\'t charge the PHR with this, because
the PHR provider has to respond to the request. Otherwise you\'re
holding the PHR vendor accountable, facilitator for something that the
EHR doesn\'t release, so I think it needs a little bit of wordsmithing
to balance that. But if we agree that we want to get something in
without driving it too much but the timeliness is going to be different
for different people in different settings, including the fact that if
the provider doesn\'t get back to you, there still is a time frame after
which it goes. And again, we\'re doing that in VA as a safety net so
that abnormal x‑ray that provides ‑‑ the patient does learn about it
(inaudible).

\>\> Charlie: This is Charlie. I mean, I think we\'re being way too
descriptive about what the health care setting is that you\'re expecting
these things to be plunked down into. And I think you\'ll ‑‑ I think we
all have some ‑‑ some viewpoints, but it may be that they\'re perfectly
useful if they\'re not tethered. So I think there\'s some sentiment at
least with us that these things need to be tethered, but there are
consumer groups \-- or groups of consumers who are perfectly happy to
have, you know, access to the information without any tethering to
providers. We may not like that, but that may be their preference. So I
think we\'re drilling down a little bit too far.

\>\> Linda: Can we give it a \--

\>\> Steve: This is Steve Shihadeh with Microsoft. If I could comment as
well, I\'m from Microsoft. I agree with the last speaker. I think that
PHRs are proving valuable today untethered. I think the way the market
will evolve there will be many different strategies on it and if we try
to lock it in, we will stifle that innovation.

\>\> Linda: I think the subgroup has gotten a range of reaction to 1.4.
And they will need to \--

\>\> \[Multiple speakers\]: (Laughing.)

\>\> Linda: \-- balance that all out and come out with whatever
modifications they need to make. So let\'s go to 1.5.

\>\> \[Multiple speakers\]: (Laughing.)

\>\> Linda: 1.5? Any further comments on that one?

\>\> Rob T.: It's Rob Tennant. Just a quick point. I think we want to
broaden it out. We are sort of hamstringing the Secretary here to only
work with the Federal agencies. I know with CCHIT, we have a lot of
success getting volunteer vendors to step up to the plate to do the
pilot. And I wondered if you wanted to put in, "And other appropriate
private-sector organizations." I suspect to have success here we\'re
going to have to partner with vendors or providers or health plans or
all of the above.

\>\> Linda: Okay. Any other comments on 1.5?

\>\> Justine: I\'d just like to elaborate on some of the comments that
were made before around potentially excluding the pediatric population.
Both at the last Community meeting and at a subgroup level we had quite
a lot of conversation around different types of population, adult
populations of the chronically ill that could be appropriate for a pilot
and I think the common denominator we all agreed on is that they have to
be frequent users of the system but there could be short‑term
opportunities with the pediatric population in particular if in fact
they are on multiple medications, they could be seeing specialists
through a hospital as well as a pediatrician. So I don\'t know if we
want to be quick to rule that out because we heard from multiple people
on the Community as well as the Workgroup level that it was a population
of interest.

\>\> Linda: Okay. I want to thank the subgroup for \--

\>\> Gail: Linda?

\>\> Linda: Yes.

\>\> Gail: This is Gail. I just want to you mention one thing, broadly
speaking. All of the recommendations, I think, that we should keep in
mind, that we should have some sort of testing, and as we go forward on
the pilots, I think it\'s a perfect opportunity to test some of these.
And I think that one of the recommendations should be testing of all
these recommendations then.

\>\> Linda: Okay.

All right. Very good. Let\'s go to the Policy Subgroup, and we have two
recommendations here, but they\'re important ones. By the way, I want to
make a correction that I spot on the appendix for Group 2 is also
labeled Appendix A. I think that should be Appendix B.

\>\> Gail: Right. I think that\'s right.

\>\> It\'s pretty obvious but I thought I would do it so there\'s no
confusion so let\'s go to Policy Subgroup B \-- or 2, David Lansky and
Lorraine Doo. And let\'s, again, just a reminder, just for protocol,
let\'s let them go through the two recommendations and then we\'ll open
it up for comments.

\>\> David: All right. Lorraine, you want to go through them?

\>\> Lorraine: Yeah. I was going to say, you read my mind. But do you
want me to walk through these, and then, we can do the \-- Appendix B
was sort of a whole trust statement and value statements that you can
do?

\>\> David: Sure. I don\'t know that we need to review that if people
have had a chance to read through it.

\>\> Lorraine: Okay.

\>\> David: Go ahead.

\>\> Lorraine: Okay. All right. So our group was charged with looking
at, obviously, some issues that are very, very important to people,
related to policy on privacy and security, specifically, is where we
ended up focusing, although clearly there are many policy issues, but
given that this is information that\'s now going to be electronic, it\'s
going to be personal health information. And there\'s tremendous
sensitivity related to that, we wanted to look at what the policy issues
might be from a practical standpoint. And all of you have the document
that we came up with. So our first recommendation should be that there
be another group, comprised ‑‑ made up of representatives from our
Workgroup and others with expertise in the issues related to the
identification of individuals who are accessing the system, how data
should be linked, in other words, verifying that it\'s from ‑‑ that it
is about the person, so the original ‑‑ for whom the original record is
about. The issue of authentication, which is, you know, \"Are you who
you say you are?\" And how do we prove that? Authorization? Do you have
a right to have access to this information? And what the policy should
be.

We know that HIPAA will control those PHRs that are created either by
covered entities or by the business associates of covered entities but
many PHRs are, in fact, being provided by organizations that are not
covered entities and, therefore, not covered by HIPAA legislation.

And we don\'t really have ‑‑ we have other kinds of laws that may govern
how personal information is used, but not under the guise of HIPAA with
which health care information is much more familiar.

And so I we thought that the group, the new group would go through
issues related to how we authenticate people, how individuals are
notified about the way their information is being used, how data is
consolidated, for example, and it\'s coming from multiple health plans
or multiple pharmacy benefit managers, how we control how information is
accessed. So, if, for example, from an emergency situation, with
providers, all the way down to which of our family members can actually
see the information, and what they can do to that information, and how
do we control that?

Any of you who have created a personal health record for a family know
that once you\'re in, you have the controls. Particularly related to
passwords, and then what you can do to that data.

And then policies related to any secondary uses for that information,
for how the PHR vendor can actually use it and what they can do with it,
and then what kinds of policies we would have to protect for breaches.
Again, there are State laws about breaches. There are the Federal
security ‑‑ HIPAA security laws, but what should the laws be related to
personal health information.

That was our first recommendation, that this ad hoc group actually look
at each of these policy issues and develop criteria around them.

The second one was actually to create an advisory body to, again,
separate and apart from the contract that is going on under the Office
of the national coordinator, but to look at what policies already do
exist that could be used for personal health records, if we didn\'t have
benefit of HIPAA for governing all of these.

And that the body that would be created to look at the existing policies
and to actually develop new ones would actually be a public body, would
not necessarily be just federally or industry based; would have
appropriate policy and technical subject matter expertise so that we
were not only looking at it from one point of view.

Each of the AHIC subcommittees would actually be represented and then we
would have all the State cultures represented from a cross the board of
the industry.

And as with many of these other projects, as we\'ve even seen in the
other recommendations, there is the tendency for making it bigger than
it needs to be, or foreseeing into it what may not be part of the
project. Oops, sorry, my phone is ringing. And so we would have a whole
schedule and a scope, full, that would be dedicated in advance.

And then we would make sure to have the appropriate resources, dedicated
to this so that we were able to do it in the appropriate amount of time.
And then be able to have time, also, to get consensus, kind of as we\'re
doing today.

And this is all ‑‑ all of these were based on the premises sees that you
see in now what\'s Appendix B, actually in terms of the significance of
the public trust, as we develop these tools and as the Federal
Government tends to promote them for Medicare beneficiaries that if
there are any dangers or any negative (inaudible), then we really lose a
tremendous amount of momentum for a very, very important tool and so the
Appendix B really documents the significance of the trust and the
implications for the privacy and security of these tools.

So I guess we\'ll open it up to comments, David, unless you want to add
something.

\>\> David: There are a couple things I do want to comment on. I think
in the version that we\'re looking at today there have been a couple
changes made when staff did some tidying up \--

\>\> Lorraine: Uh‑huh.

\>\> David: \-- that I don\'t fully support and I want to flag them for
discussion. There ‑‑ as you can all see, there are two recommendations;
the second one is for a longer-term permanent function and some
characterizations of that function that Lorraine just listed. Those
attributes that are at the bottom of 2.1, in the initial draft the
subgroup developed were actually associated with the short‑term ad hoc
process, not necessarily with the long‑term process. And so I think we
should sort out ‑‑ I don\'t actually believe that a couple of these
points should be recommended to be part of the long‑term process.

Second then, going back up to 2.0, conversely, the ‑‑ I think the staff
probably, and you can all, you know, Jodi and Kelly can speak to this, I
suspect you had some concerns that our own structuring within the
Community and the Workgroup doesn\'t give us the authority to make
recommendations with regard to policies in these areas. So the language
here says that this new ad hoc Workgroup would craft possible questions.
Firstly I don\'t think there\'s a need for crafting possible questions,
I think people in the field really need guidance that reflects best
practice or consensus expertise. If we are not structurally, statutorily
capable through one of these ‑‑ through Recommendation 2.0 \-- of
putting in place a process that generates guidance, I don\'t think this
is a proper activity. I think we need to or the Community needs to find
a way to proffer guidance to those working in this field more rapidly
than waiting for this longer-term 2.1 to come into being.

\>\> Justine: David, just in reaction on your comments, I think we need
to go back first and make sure we adequately describe the
characteristics of both the advisory body and the workgroup process.

\>\> David: Right

\>\> Justine: But we will definitely follow up with you and spend more
time to make sure we get it right. As you know we were editing last
minute.

\>\> David: I totally understand the need to make the adjustment; I
wanted to clarify, though, that ‑‑

\>\> Justine: But the more important issue that you raised about having
recommendations on specific policy questions or the framework around
them, we were trying to think realistically what could happen over the
next several months and I think it really would be, you know, helpful if
we could talk again offline to figure out how much we can take on for a
cross-cutting group over the next, say, 4 to 5 months, but I think, in
particular, we were hoping that the ad hoc group could actually craft
the scope of work and really set the stage for everything that would be
done on a longer-term basis. And if in that process we think that it\'s
realistic that they make some recommendations around the policies that
are needed, then, let\'s try to include that back in, but we just wanted
to be realistic, given the time frame, and given the need to have sort
of agreeable entity to take it on and recognize what\'s going to work
over the long haul.

\>\> Jodi: And this is Jodi Daniel. I think, also, because there were
some recommendations that were ‑‑ and discussions that were going on
with some of the other workers on some of the same topics, that a lot of
the discussion was at a fairly high level that we were trying to get to,
you know, we\'re thinking that there\'s sort of a need to drill down to
really identify all of the specific points where there are issues and
concerns, which I don\'t think, you know, in the discussions at the
workers\' level have been identified yet at that kind of detailed level.
So there was a sort of a, one, get everybody that\'s been having this
conversation through the four different workgroups to get together and
clearly identify where there are issues that need policy resolutions,
and then, hopefully, to ‑‑ you know, to, in the meantime, we could
establish a longer term group that can sort of take those on as those
recommendations come out.

But also, you know, to ‑‑ basically to set the stage so that when we
have that group up and running, they\'re sort of, you know, hitting the
ground running and looking at the issues rather than trying to identify
the issues.

\>\> Linda: Okay. Are we ready for ‑‑ to open it up for questions?
Comments? You can start maybe with Recommendation 2.0.

\>\> Ross: This is Ross. I had a very similar reaction to what David
just brought up about the questions, phrasing, and agreed that ‑‑ agree
with the approach that he was suggesting about reframing that. And I\'m
looking forward to seeing a new version of that.

One question I had about the Recommendation 2.0 and the second to last
bullet point under the question section about what they\'re going to be
looking at is whether or not they were formulating questions or actually
formulating interim policies or recommendations, one of them talks about
policies for secondary uses of patient‑supplied data. And I\'m wondering
why we specifically say "patient‑supplied." I\'m guessing that it\'s
because we\'re thinking that the other data that are supplied by others
are not ‑‑ are coming from the PHR provider, but that\'s actually as
in ‑‑ if I\'m getting this from my parent, for example, and my health
plan, they\'re providing me with a PHR they\'ve actually got data that
they are supplying from the PHR but it may be an independent PHR
provider so all the data that go into PMR they would have secondary use
of the policies for all of the data whether they originate from the
pharmacy or from a laboratory or from the pair through claimed
information or through the provider themselves that there should be
policies for all secondary uses.

\>\> David: I think, Ross, that the reason for this ‑‑ I agree it could
be improved, was the sense that most of the institutional and
industry‑source data was probably coming from HIPAA‑covered entities and
so some of those secondary use issues were addressed there, whereas data
either supplied by or consented by the consumer may not be in a covered
entity class, and therefore, where there are almost no established norms
for how that would be treated. But I agree with you, it could be
rewritten to address your concerns.

\>\> Ross: I guess ‑‑ I guess this gets into this issue that we haven\'t
fully addressed in this, there was a question I stuck on the bottom of
the draft a while back about have we really defined who owns the PHR
data itself? And is that something that helps define a PHR and
distinguish it, even if it\'s HIPAA-originating data from a pair
provider, somebody that\'s a covered entity, once this stuff gets dumped
into something that has patient control over it. And again, whether or
not we can tag it so that we know that it hasn\'t been changed in any
way so there can be the understanding that the source has ‑‑ has been
unaltered so if I deliver this same information to another provider
under my control of the patient, that they\'ll know that it\'s untainted
by ‑‑ it hasn\'t been modified by the patient and I can trust it as
being original source data, it no longer is, perhaps, truly HIPAA
personal health information controlled data, because I\'m the patient.
I\'m ‑‑ I\'m ‑‑ I\'m deciding where it\'s going to go and what\'s going
to happen to it. Is that ‑‑ a very we ‑‑ have we established that
definition and that ownership understandings? And is that a ‑‑ are we
butting up against that in this again?

\>\> David: Big question.

\>\> Gail: I mean, my ‑‑ my impression is that we really need to tackle
that full discussion probably in our next big Workgroup meeting after we
finish our work on a specific charge because it is sort of an
underlying, pressing issue which we haven\'t fully explored, but I also
think we haven\'t had a really lengthy discussion how to frame secondary
uses whether it\'s in or outside of HIPAA. And, Charlie, I don\'t know
if you\'re still on, but I know that AMIA has an effort to start to
establish a framework for this. So perhaps I can inform some of the
thinking with this ad hoc policy workgroup.

\>\> Charlie" You mean in terms of the data framework.

\>\> Gail: Right.

\>\> Charlie: No. In fact, Thursday and Friday we\'re ‑‑ we\'ve pulled
together 30 people to talk about this further. And probably after Friday
we, you know, maybe early next week we\'d have some stuff to feed, back
to the group at least. Because I think that will be a central issue as
to who owns ‑‑ who owns patient data.

I know Nancy Davenport‑Ennis and I don\'t want to speak for her but who
will be at this meeting on Thursday, is bringing forward the view that
if people would agree that patient\'s own their own data, then a lot of
policy can be framed from that viewpoint.

\>\> Jodi: Yeah. This is Jodi Daniel. It depends, ownership is a really
complicated issue. Ownership of data. And it\'s something, I know, that
when we ‑‑ when the department dropped at HIPAA we'd stay very far away
from, because \--

\>\> \[Multiple speakers\]: (Laughing.)

\>\> Jodi: To be honest. Because, they\'re, typically at least where
there is State law on ownership of health information, that usually
resides with the provider who is creating the medical record, although
there is certain laws on rights with certain information I don\'t think
there\'s any laws that I\'ve seen on personal health records and how and
whether there\'s ownership rights or not that ‑‑

\>\> Charlie: That\'s exactly right. Which is the personally entered
health information, so stuff that you contribute yourself, there\'s very
little framework for that, but I think that\'s ‑‑ that\'s the ‑‑ that\'s
why this is such a timely issue to try to readdress.

\>\> Rob K.: And this is Rob. I think a number of people point out when
there\'s electrons involved the issue of ownership is an interesting
one. And before you get a little bit different about it, the word
"ownership" has a very different meaning. This provider certainly has a
copy of what they generate. We seem to endorse the patient also has a
right to a copy of that. The interesting thing then is who has the right
to relief that. Does it remain the patient\'s right as to when the
provider can or cannot release that and under HIPAA there is the control
that there so if you have differentiate the roles the patient has a
right to a copy, the provider has the copy.

\>\> \[Multiple speakers\]: (Inaudible.)

\>\> Rob K.: The issue of when does it get shared, who has the right to
throw that switch.

\>\> Lorraine: I think that\'s very helpful. The approach we were taking
is we looked at the issue of rights and who has the right to sort of
controlling data flow and data closure, and in some ways it\'s a as much
more fruitful discussion because it avoids the issue of how you assign
ownership of electrons and data and the like and turning into a
discussion about rights is actually in many ways a more productive and
helpful discussion when you\'re talking about electronic health
information.

\>\> Charlie: So you would think so, except ‑‑ this is Charlie again.
Except that there ‑‑ you know, I, as a part of the process of this
meeting that we\'re running on Thursday, I\'ve come across, you know, a
company run by GE health care, where doctors or health care
organizations can contribute their electronic health records, whatever
they have in them. The company sells the information to pharmaceuticals
for studies, and then pays the physicians and the organizations that
contributed the data back if their actual records are used in health
studies.

So some ‑‑ this is a \$5,000,000 business. And some health organizations
are getting \$40,000 a quarter. So I think in a commercial sense the
word ownership is already out of the bag, so‑to‑speak, in that, you
know, there\'s a commerce that has occurred with this data. And I
believe that all the RHIOs are going to eventually ask the question
since they don\'t have an underlying business model that I know of yet
for the most part, once we aggregate all this data, including the
personal health records which seem to be in every RHIOs crosshair
so‑to‑speak, why don\'t we sell it? So I think ownerships a ‑‑ I mean, I
hear that there\'s a nice way of talking about it, without using the
word, ownership, but I think ultimately, although charged, it\'s ‑‑
it\'s a relevant concept. And you can sell it. So you must in order to
sell it.

\>\> \[Multiple speakers\]: (Inaudible.)

\>\> Rob K.: This is why the meeting, Thursday, Friday\'s going to be a
particularly interesting one and you know we\'ll see whether the
fireworks get set off or not by some of the differences. The fact that
it\'s happening doesn\'t mean that the consumers would necessarily
choose that and just like when Visa was set up because it was set up by
bank\'s it\'s in the bank\'s interest to charge the most interest to us,
but if, in fact, consumers had also been members of Visa, which was
proposed at one point, then the model might be different where the
consumer can choose to release their data to be sold or to pay 5 bucks a
month or 5 bucks a year to not have it be sold.

\>\> \[Male voice\]: Yeah.

\>\> Rob K.: Where it becomes a consumer choice.

\>\> Linda: I\'m going to step in for a second. I think the ownership
might go a little bit beyond the scope of what\'s going to be in our
letter to the Secretary, this first letter. So, try and get us back onto
just commenting on the things that are going to lead to our deliverables
and so let me ask if there are any further comments on 2.0, in that
vein. If not we could go to 2.1.

\>\> Ross: I would just like there to be a question within those bullets
for policy groups to consider about issues of data ownership and rights,
rights and ownership.

\>\> Linda: Okay.

\>\> Ross: And definitions of a PHR.

\>\> \[Multiple speakers\]: (Laughing.)

\>\> Linda: Okay. 2.1. Recommendation 2.1.

\>\> Rob K.: This is Rob Kolodner. I think one of the things looking at
2.1 and 1.2 and is helping to craft what the differences are there and
how they relate to one another, where we\'re doing the survey of things
out there and then making recommendations, I think you may want to make
a more explicit tie-in to one, whether the group will use the product of
1.2 as part of their deliberations or something like that.

\>\> Linda: Yes. That is a good suggestion.

\>\> Linda: I think that\'s a good general suggestion, is we now put
those all together that we look across the subgroups that have been
operating somewhat independently but to see if there are interactions
that we need to acknowledge in the different recommendations. Anything
else on 2.1?

All right. Very good. So thanks to the Policy Subgroup for their work,
and now let\'s go to the Education Subgroup and there I believe we have
three recommendations. So, again, we\'ll start with the review of the
recommendations, and then take questions.

\>\> Rob T.: This is Rob Tennant. I just wanted to start off by
acknowledging the hard work that the sub workgroup and the staff, and in
particular, Kathleen Fyffe, put in a lot of hours, and in fact, the sub
workgroup's first recommendation was going to be for the Secretary to
deny e‑mail access to Kathleen on the weekends.

\>\> \[Multiple speakers\]: (Laughing.)

\>\> Rob T.: But I think what we\'ve seen in the first couple of hours
here is a discussion of sort of the policy and functionality and what is
all this going to look like.

What we tried to do is figure out how we\'re going to reach the
audience. And so the goals of this sub workgroup are really to identify
what the educational requirements and needs might be, and obviously,
this version of the letter differs substantially from anything I\'ve
seen before, so I\'ll talk about it and perhaps add some comments as
well.

But I think what we\'ve tried to say is we need to be looking to outside
groups, for example, chronic care patient advocacy groups, you know,
American Cancer Society, those types of folks, to assist in trying to
reach their audience to describe what we\'re trying to do with the PHR,
where there are the value elements to have the patient utilize it.

One thing that was cut out from the original recommendations which I
would like to try to ease back in is really by focusing education on two
groups: one, of course, are the patients and their family care givers,
but in my mind, the second group that we need to educate are the
providers.

The providers are going to be the folks that are not only going to
utilize the PHR to provide better care, but in most cases they\'re going
to populate the data. So I think, for example, in Recommendation 3.0
we\'re looking at harboring, working with private sector organizations,
on various initiatives. I\'d like to say, you know, patient and provider
awareness (inaudible) initiatives.

One of the things they talked about in the Workgroup was the idea of a
selected target population. And to make it easier for the pilot, one of
the discussions surrounded trying to use a closed system, whether or not
it would be in like community health centers where we can look directly
with HRSA, we already have community channels going out to the Community
and back into HRSA or integrated health care delivery system just to
make life a little bit easier, it\'s going to be a challenge, no matter
how we do the pilot but to broaden it too wide I think is going to cause
a lot of angst. We can focus with AARP, American Heart Association, and
folks like that. Others will be pleased to hear the AMA is on that list.
But I think as well, here, rather than say "voluntary organizations" at
the end, which I'm not sure you may have mentioned today, I think
"appropriate voluntary organizations" allows us to outreach to other
folks.

For the longer term, we say, here, provide incentive. I think we need to
flesh out not only who those incentives go to, but what are the
incentives, is it financial? Is it something else? And, again, I think
we want to look at the public sector, not just private sector, for
example. HRSA might be an excellent case study of utilization of PHRs.

I like the idea about trying to make PHR part of the normal licensing
process of care. I think that\'s going to take a lot of elements to
providers, again, what we don\'t want is to have the patient come into
their provider with the Web site and password scribbled on the back of
an envelope and handed on over to a provider who\'s never seen it
before.

So, again, I think the success or failure of this whole project is going
to be determined by how successfully we can educate. Recommendation 3.2
here is a little bit confusing. It looks like we\'re going to be
performing research on how to educate, how to fund and how to leverage a
recommendation from a workgroup which was to change that to say
"Activities of its organizations: 2:1, conduct research on ways ‑‑ on
how best to educate consumers; 2, fund pilot studies; and 3, leverage
existing State relationships." So just to make it clear, I think we
probably want to make that change. But I guess I\'ll stop there.
There\'s a not of verbiage that we can discuss.

One of the concerns I had was in the \-- after 3.2 we talk about
something called "Follow Me." I would recommend you don\'t mention any
proprietary products in the recommendation letter.

\>\> Dan: This is Dan Green. Linda Springer had to step out for a
minute. Why don\'t we open it up? First, does ONC, Kelly or the others
that led this have any clarifying remarks?

\>\> Kelly: No. Just that I think we wanted to mostly capture ‑‑ it was
receptive to the last comment, about Follow Me. We wanted to capture
what we learned from an example of a PHR that actually started
originally for Migrant workers and was quite successful in reaching
population with low health literacy which is something that the
Workgroup is also discussing quite a bit. And there was interesting
lessons learned and we somehow need to capture the lessons learned
without promoting or identifying any kind of individual proprietary
product. So I respect the comment and we\'ll certainly make those
changes.

I also just wanted to point out that to the extent that main anyone has
any feedback that could help us, as best assist with some of the
recommendations that are still relatively high level, in particular, the
agency on research and quality I know has offered workers, Helen
mentioned last time that they could possibly be doing some consumer
research through the cap survey. And if anyone on the phone from AHRQ,
they might want to comment on what might be more specific about that
activity.

\>\> Susan: Hi. This is Susan Christiansen. I\'m sitting in for Helen
today. Yeah, I don\'t know if you\'re familiar with our CHAPS, which is
Consumer Assessment of Health Plans Survey that generally surveys
consumers on their satisfactions with various aspects of plan
performance. We\'ve been doing some work with ONC and Kathleen and some
others and I\'m coming in and just getting up to speed so I won\'t be
able to answer a lot of your questions about this, but we\'re doing some
work on taking this cap survey and using it in some way to develop some
information from consumers about what they know about the use of health
technician technology in their care at a higher level or with a personal
health care record. What we want to do is develop some questions to
include in that survey so when they do, when they take the survey and
assess the plan we\'ll capture some ‑‑ whether they have the experience
using an EMR in their doctor\'s office whether they knew that the doctor
had an electronic health record, whether they thought it was a value. So
top end in late June, June 28, we\'re going to be convening an expert
group to look at what kind of questions we might be able to include on
that. And pilot it initial until one site, we\'re thinking.

So it\'s very much in the stages of getting these folks together and
figuring out how we\'re going to proceed to get the best feedback to
feed into this process.

\>\> Linda: Okay. Very good. Any other comments then on the Education
Subgroup?

\>\> David: I have some reservations about it. And I ‑‑ maybe it\'s to
Kelly\'s point that this is still really very apple pie-generic stuff
and many groups have met over the last couple of years to try to wrestle
this to the ground and they\'ve never quite hit the turf. I\'m not sure
at this stage of development what the Federal role can be, I think the
research role Susan described is very worthwhile. The Establishing a
Consumer Awareness Initiative to me begs many questions, and I\'m not
enthusiastic about this, having this be a priority competing with the
other things that we\'ve talked about and staff earlier mentioned is the
band width question. Until we\'ve defined a breakthrough project and
figured out population it\'s serving and what benefits it may offer that
pop lakes, and at that point I would think that the sponsors of the
project who are invested in it which would be membership groups,
vendors, provider systems, whoever, they will have a lot of motivation
to put together an appropriate outreach program. For example, the Blue
Cross, MA, program and the three communities up there, the health
collaborative, they\'re putting a lot of effort into designing a
consumer outreach program because they are ‑‑ they have specific
objectives in mind so I\'m hesitant to endorse a broad, undefined, vague
statement that doesn\'t translate into a work plan for anybody as I
understand it, at least.

\>\> Linda: Are you ‑‑ do you have a concern about any particular
recommendations or the whole initiative?

\>\> David: I guess I could ‑‑ I would support the initiative if I had
enough specificity to know what it was really ‑‑ what the work would be
going forward and I don\'t yet see that in this proposal.

\>\> Linda: So it\'s just a broad concern. It\'s not targeted at any of
the three recommendations specifically?

\>\> David: I think at this point, I think they\'re all too imprecise to
be priority recommendations from my point of view.

\>\> Linda: Anyone else want to respond to that?

\>\> Kelly: David, this is Kelly. We tried to ‑‑ we\'ve had, actually a
list of 13 recommendations we tried to consolidate. And I think in the
consolidation process we might have lost some of the content and
specificity. So before we, you know, think about disregarding them
completely it would be helpful to see what we could add to them to make
them more meaningful. I think 3.0 in particular might be something in
the short‑term if we specify that we\'d like this to happen in parallel
with the implementation of the breakthrough project. So it\'s, you know,
arc and CMS and appropriate private sector organizations all want to
collaborate on doing, you know, a series of pilots and they have an
outreach activity that\'s done in parallel we would then have the
ability to evaluate that and to, you know, glean some lessons learned
which could be valuable, but right now we don\'t have a lot of detail in
there that sort of makes it actionable.

\>\> Rob T.: David, it\'s Robert here. Yeah. We had, I think I put
together almost five pages of specific recommendations on how we could
actually target groups of providers and consumers. And as Kelly said it
kind of got sort of melded into a very broad recommendation. But there
is ‑‑ I feel that it\'s even more important than, I think you\'re giving
some credence to that the education process start even before we start
to roll out the pilot.

This is a very sensitive issue. You\'re starting to see that sort of
percolate here in Washington you see it here on captain toll hill and
other places there\'s a lot of concern with privacy and this touches
some other issues and I think we need to do some outreach to folks like
AARP and others to let them know what\'s happening, why we\'re doing it,
why is it a benefit to their family members and others, because what we
don\'t want is to get backlash from consumer groups on this.

\>\> Justine: I think that, too. I know our experiences, and even in the
survey that\'s out earlier, that 72 percent said they would probably or
definitely use a PHR but when you look at PHRs that are actually out
there, the use is very low. It\'s very low by the consumers and it\'s
very low by providers integrating it into their work. So I think it\'s
critical not own fully we\'re going to advance the PHR breakthrough but
when we look at the broader vision and this is hopefully a stepping
stone to the broader vision of the (inaudible) and if you can\'t get
folks educated and interested in understanding value and over some of
the youth hurdles of all of that is much more difficult. I think this is
a critical use, and I think maybe going back, it sounds like the
personal (inaudible).

\>\> Linda: One of the ways that we could get a little more specificity
as well and it relates back to our idea of tying recommendations
together across the subgroups is Recommendation 1.5 starts to target a
population, meaning patients with chronic disease. Maybe there\'s a way
that we could target one part anyway of the educational initiative to
that particular part and of the population. It\'s not to limit it to
that, but specifying that as one of the focal points might be ‑‑ might
add a little more specificity.

Other thoughts on the education initiative?

\>\> Kelly: I\'d just like to also react to David\'s comment about
needing specificity around organizing research activities. I\'m
wondering, David, if you have any ideas on how you might be able to
collaborate on a researcher\'s end and then to identify perhaps through
what specific agencies or outside entities could also collectively do
their part to build the evidence base for this.

\>\> David: I agree. I think 3.2 is very strong and relevant, and we
should follow that line of reasoning on compiling the evidence base.
That seems like a natural function and obviously AHRQ should play a
strong role there.

\>\> Anders: This is Anders Gilberg. I just have a question about 3.2,
the very last sentence. In terms of, you know, certainly, I would agree
that, you know, HHS should go ahead and identify and prioritize its
activities and to be coordinated, I ‑‑ I ‑‑ the only question I would
have is in terms of, you know, CMS, for example, coordinating its
activities through the office of national coordinator, you know, yon
want ‑‑ necessarily think we want to set up additional bureaucracy or
whatnot. So maybe I\'m misinterpreting the sentence. I interpreted it
what you\'re trying to do is that you want to have a uniform message
across the agency. But can someone elaborate on that one?

\>\> Kelly: I mean, and this is Kelly, and having spent a lot of time in
(inaudible) and CMS the last 2 years I think it\'s basically me picking
up the phone and talking to Tony and Lorraine.

\>\> \[Multiple speakers\]: (Laughing.)

\>\> Kelly: So I think the idea is we want to make sure we\'re all, you
know, working together to build the evidence base and we\'re all doing
our part and CMS will have some testing going on with PHR vendors it\'s
really more technical data oriented investigations but there can be an
opportunity for AHRQ and others to work with them if they are to do
implementations in one or more States where we could actually do an
outreach campaign that would actually be in collaboration with that more
technical pilot activity.

\>\> Kathleen: Kelly, can I ‑‑ can I suggest just for consideration that
at the very end of that, that instead of saying "coordinated through,"
that you might want to consider "coordinated with."

\>\> Kelly: Sure. That\'s fine.

\>\> Lorraine: Yeah.

\>\> David: Yeah. That\'s better.

\>\> Lorraine: That might help. And, Kelly and Kathleen, this is
Lorraine. You know, in terms of technical issues like that, on the same
page actually above the recommendation, it talks about the CMS PHR
pilot. And, you know, doing data available through the Medicare
beneficiary portal. That\'s actually not a firm thing. So should I just
put that in the e‑mail so we can make those kinds of edits later?

\>\> Kelly: Yeah. I got your edit sort of late in the editing process
and recognized that. We can certainly, you know, perfectly State what
that ‑‑ what you\'re doing in your pilot testing.

\>\> Lorraine: Okay.

\>\> Kelly: But the concept is that if it\'s an opportunity to build an
outreach program around that so you might get more Medicare benefits to
utilize the data.

\>\> Lorraine: Right.

\>\> Kelly: It\'s something that we could potentially work off of.

\>\> Lorraine: Right. Okay.

\>\> Rob K.: This is Rob Kolodner the Recommendation 3.1 I think needs
summary wording when I look at normalizing the practice of PHRs, I
don\'t think that practice applies to PHRs or normalizing the use of PHR
something. It just ‑‑ there\'s something about it that doesn\'t flow and
we need that to ‑‑ if we\'re going to have an effect on the
recommendations they need to be taken out of context and pushed apart.
And I wasn\'t sure at the end of that whether you need to repeat that
section about the private-sector organizations (inaudible).

\>\> Ross: Don\'t blame me. But I think there\'s a more \-- broader
concern about that, when you use the term "standard of care," you begin
to have to discuss malpractice. There\'s issues surrounding that I think
we haven\'t really touched on, but you start to say it is the standard
of care, what happens if you don\'t use it? Well, then that raises a lot
of red flags for physicians.

\>\> Rob K.: Two things. One, I think that the ‑‑ because I think the
PHR is disruptive technology I think what it\'s really going to do is it
has nothing to do with health care, directly it\'s going to empower the
individual and health care providers being just in the lives of
patients. The providers interacting with the patients is very small and
they\'re felt and the other things are going to be much broader so I
think you want to be careful, Charlie or somebody else mentioned that we
seem to be getting provider centric in our PHR and it is a duty to have
some (inaudible) in that.

\>\> Kelly: Now, one potential way to handle this particular
recommendation since we have not really identified who or what kind of a
incentives that we\'re talking about, we have other explanation of
things we still are considering. We could assume this is an evolving
recommendation and just try to add more specificity around it in the
next few months. Unless people feel like there are some really key
concepts that we need to introduce now.

\>\> Linda: I would suggest that we put something down that\'s firm. And
then, you know, to the extent that there are other parts that we think
have already evolved we can leave those off to the side but I think
it\'s important to have an education component in our first letter.

\>\> Kelly: Oh, I\'m sorry, I just meant 3.1

\>\> Linda: Oh, okay. I\'m sorry.

\>\> Rob T.: This is Rob. I have a couple of comments about, one just
real quick one about coordinating 1.5 and the three ‑‑ and all of the
other ones, because they, specifically the 3.0 talking about the
private-sector organizations and awareness even though ‑‑ even though in
the near term we\'re tying those two, the pilot programs, whereas the
1.5 recommendations are all HHS Federal Government centric. And so I\'m
not advocating that it should be "either/or." It\'s probably an "and,"
but it should be both, but they should be coordinated are we only going
to recommend a private sector with education when we are talking about
recommending the pilots be done through Federal agencies?

\>\> Ross Martin: As Dr. Kolodner just mentioned about getting a little
bit too provider centric, I guess I would ‑‑ I would like us to think
about, as we read this, once we get out of the weeds a little bit and
read this over again and I would like the question at the top of our
minds to be where ‑‑ our group is called the Consumer Empowerment
Workgroup. Is everything we\'re recommending targeted toward consumer
empowerment or not? And you know, when I was practicing in a house \--
as a house doc back in the mid‑\'90s, one of the things I wanted to see
happen some day was, when I called somebody up at 2 o'clock in the
morning, and because the patient was going south, and they said to me,
"I'm sorry. That\'s not my patient. That's my partner's patient. I'm on
call tonight. Do whatever you think's best. Don't call me back," click,
I would say to these students someday, because that's a bad standard of
care. And if they had electronic records they would be able to do that
and say, "Oh, that\'s Mrs. Jones, she had a hip replacement this morning
and I didn\'t see her personally but I know all about her and I can
inform up." That\'s the standard of care I want to see happen. Same
thing with personal health records I want it to be a standard of care
some day where I can\'t receive as a doctor somebody\'s health care
record and incorporate that into my record then that\'s a bad thing.
That\'s not going to be tomorrow, it\'s not going to be a year from now,
but there should be an expectation that there\'s a road map that says in
the not so distant future because we\'re accelerating this and pushing
this, that that is not considered a good standard of care. And I
don\'t ‑‑ I don\'t want to create a defensive environment for that. So
off my soapbox, but I do want the thought to be when we get done with
this and when we\'re all ready to endorse it and say, "This is what
we\'re handing over to the Community," we can say with all sincerity,
"This has 'consumer empowerment' written all over it."

And I hope we can all do that at the end.

\>\> Linda: I think that\'s a very good guiding principle for us as we
craft this that we ‑‑ the final form that we step back and make sure
that the consumer is first and foremost, if you look back at the broad
charge and the specific charge I think it\'s very consistent with what
you said.

One thing on 1.5 is we did broaden that, I believe, earlier today to
include other entities beyond just Federal Government so I think ‑‑ I
think we just need to make sure we do that.

Anything else on the education subgroup? Feedback for them?

Okay. Again, I want top thank all the subgroup recommendation ‑‑ or
presenters for the recommendations and the good work that they have
done, and the charge then will be for them to take the information and
the comments from today and as one of the next steps, to go back and
review all of those and make modifications where it\'s appropriate. If
you need to do follow-ups with anyone, you know, obviously you\'re free
to do that. We\'ll make ourselves available. But I think we had some
pretty candid reaction and comments and feedback for the subgroups.

Now, I want to talk a little bit about next steps, and I\'m going to ask
Kelly for some help as well on this, but as I see it, we\'ve got four
really main steps to take between now and our presentation. One is the
finalization of the letter, the redraft of the letter.

The second would be the adoption of that redraft and our Workgroup
meeting next Monday. There\'s one scheduled for next Monday, may1st, and
then we would complete the letter, really finalize it with those final,
you know, last tunings, confirmation, by May 8. And then ‑‑ then, given
that, we would have slides prepared, PowerPoint presentation for the May
AHIC meeting. Now, each of those steps and I think probably for each of
us to have something for the May 1st meeting we\'re going to need to
have a redraft incorporating today\'s meetings comments by the end of
this week. I\'m going to ask, Kelly, if you could comment on those four
steps and see if those are what you had in mind.

\>\> Kelly: Yeah. No. I think that\'s great. I think actually Kathleen
put together a detailed timeline for us and that\'s perfectly in line
with what we were thinking. And I just would also like to comment that,
to the extent that it\'s feasible we could try to wrap up by Friday, May
5, on our final version, we can quickly get that into, you know, a Power
Point presentation where it will be easy for the Community members to
walk through it and sort of agree on not only the content of the
recommendations but sort of the actions that need to be taken by, you
know, any of them, depending on the particular interests that they
represent. And I\'d also like to have point out that I think we\'re
going to be briefing the Secretary on our output on our recommendations,
the end of next week.

So that gives us another added incentive to try to wrap up.

\>\> Linda: So and then by the end of this week the subgroups will ‑‑
let me just make sure I have clarification here. Kelly, who is going to
be responsible for the redraft of the letter?

\>\> Kelly: Well, we can do the document management here. I think we\'re
probably going to have to circle back with the people in each subgroup
that were most instrumental and through organizing the recommendations,
and decide whether or not we need to sort of convene a quick meeting
among the Workgroup, subgroup members. I think clearly the
interoperability and education subgroups have a fair amount of, you
know, a fair amount of back and forth that will need to be done to
refine those. So whether it\'s by e‑mail or by phone, we\'ll make sure
that gets done between Kathleen, Katy and I, we\'ll organize that. And
then I think with the policy recommendations we can probably mainly go
off the comments that were presented today and make sure we follow up
with David Lansky and Ross on getting the language right, \'cause they
both expressed concerns.

\>\> Kathleen: This is Sergeant Fyffe here.

\>\> \[Multiple speakers\]: (Laughing.)

\>\> Kathleen And I think for us to be successful, we really need to get
all comments, all edits to me by noon this Thursday.

\>\> Kelly: But I would ‑‑ I would actually recommend that we not do a
lot of red lines. If we have 15 copies of red lines it\'s going to be
challenging.

\>\> Kathleen: Yeah. That\'s a good point. Please send me your ‑‑ your
comments in an e‑mail. That\'s what we prefer instead of in this text
document, because our cup runneth over with red lines and it\'s very
difficult to manage under a tight time frame.

\>\> Linda: Any questions from anyone from in the group for Kelly or
Kathleen?

Okay. Let\'s open up to any public input. Any public comments?

\>\> Matt: If any members of the public on the phone right now and want
to make a comment just press Star 1 on your touchtone. And of course, if
there\'s anybody there in the room, somebody will be able to show you up
to the speaker phone, and lastly, if there\'s people following along on
the Web you\'ll see instructions on your screen about how to make a
public comment and as we\'ve done in the past we\'ll wait about 3 or 4
minutes for people to get through to the operator. If we don\'t hear
from anyone by then we\'ll leave up an e‑mail address on the Webcast for
people to send their comments and their questions.

Operator, can you please open the first line in the comment cue?

(Pause.)

\>\> Jim: Hello.

\>\> Matt: Go ahead.

\>\> Jim: This is Jim Acklin, I just wanted to comment that I think it
would be very helpful if we would \--

\>\> Linda: Jim, we really can't hear you.

\>\> Jim: Do you hear me now?

\>\> Linda: That\'s better. Thank you.

\>\> Jim: Yes. I think it would be very helpful if we would take a look
at the notion of a pilot which has been referred to a number of times
this afternoon and put a little more definition on that. What is it we
expect to accomplish through the use of the pilot?

The second point I\'d like to make is, I think the comment about taking
a step back and looking at the consumer empowerment notion and reviewing
the perspective from that look may lead us to want to take a stronger
role at defining the consumer\'s requirements. If you look at it from a
\-- call it a system engineering perspective, we really don\'t have a
good sense of the consumers\' requirements for the system. Thank you.

\>\> Linda: Thank you for that comment. Matt, do we have any others?

\>\> Matt: No. Let\'s give it another minute or so just to make sure
that there\'s nobody held up at the operator\'s, and if there\'s nobody
then, I\'ll let you know.

(Pause.) Okay. It doesn\'t look like anyone else is calling in and again
if there are any members of the public who want to submit a comment
later on, the e‑mail address will be left up on the Webcast for the next
hour or so.

\>\> Linda: Okay. Very good. I want to thank a few people. First the
leaders of our subgroups, all three. They\'ve done a lot of work in a
short period of time in compiling our earlier information and getting us
to the point where we have recommendations for discussion. I want to
thank all the members today for their comments and for their review of
those recommendations. And I want to thank, particularly, Kelly and
Kathleen for their help in getting us these materials and helping us to
stay on track for the timeline and for the work that all of us are going
to be doing, thank you in advance between now and Monday and then all of
you on the 8th and then the AHIC for the meeting. I think we\'ll have a
good product and I appreciate and I think I\'m speaking for Nancy, as
well, and for Gail, that a lot of good work has been done, a lot of good
thought has gone into this, and we will have a good product to present
to the Community and to the Secretary.

So I want to thank you. And thanks for your participation today.
Meeting\'s adjourned.

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