AMERICAN HEALTH INFORMATION COMMUNITY

WORKGROUPS:

CONSUMER EMPOWERMENT #1

January 30, 2006

1 p.m. EST

\>\> Matt McCoy: Okay. We\'re live. Dana, I\'m going to turn this over
to you. Why don\'t you go ahead and ask me if you need anything at any
time, okay?

\>\> Dana Haza: We\'d like to thank everyone for their participation
today in the initial kick-off meeting of the Workgroup for Consumer
Empowerment of the American Health Information Community. I hope
everybody had a good weekend. What I\'d like to do is first of all begin
by taking roll to confirm who is on the call.

Do we have Jody Daniel on the call?

\>\> Matt McCoy: Dana, people aren\'t going to be able to respond to you
without pressing star 1 first. If you read down the names in the host
control, those are the people that are on the call. They\'re just muted
right now.

\>\> Dana Haza: To begin the call, I want to confirm with the workgroup
members that you have all been sent an agenda, a contact list, a
milestones list, and a briefing document. If for any reason you\'ve not
received these items, please don\'t hesitate to e‑mail me at
dana.haza@hhs.gov. I\'d like to acknowledge Kelly Cronin. She\'s one of
the new Directors to the Office of the National Coordinator. She\'ll be
the point of contact for this workgroup, the bridge to the agency as
well as the bridge to any of the needs that the workgroup may identify.
I think you\'ll enjoy working with her. With that, I\'d like to defer to
our Co‑chairs, Linda Springer and Nancy Davenport-Ennis.

\>\> Nancy Davenport-Ennis: Thank you, Dana. This is Nancy
Davenport-Ennis. I\'d like to welcome each of the members of the working
group to this phone call today. I\'d like to ask as we begin our first
session that if each of the members of the committee would please
identify themselves for us and the organization that they represent so
that we can all have a sense of who is on this call with us together. We
could begin that process now.

\>\> Matt McCoy: Operator, if you would, can you please unmute
everyone\'s lines for just a moment? And what I\'ll do for the workgroup
members, I will read the list of members present, so when I say your
name, you can introduce yourself and say what organization you
represent.

\>\> Linda Springer: I\'d also like to just add my welcome to the group,
and you know Nancy and I have both reviewed the agenda, and we will each
be leading various parts. But we\'re looking forward to a really good
meeting and a good effort collectively. It isn\'t just the Co‑chairs'
meeting. It\'s your meeting. So I think that we are looking for
participation.

\>\> Matt McCoy: Dana, while we\'re unmuting the rest of the lines, do
you have any members that are live with you in the building that could
introduce themselves?

\>\> Dana: I do not.

\>\> Matt McCoy: Operator, could we please unmute everybody\'s lines as
soon as you can do that?

\>\> Dana: I misspoke. I apologize. We actually do have two workgroup
members here. We\'re delighted. So we\'ll begin with the introductions
here.

\>\> Sue: Sue McAndrew. I\'m from the Office for Civil Rights, and I do
health information privacy for OCR.

\>\> I\'m not sure if you can hear me all the way over here. (Inaudible)

\>\> We can\'t hear.

\>\> Scott Martin: I\'m with Pfizer. I\'m a medical (inaudible) and I
work on standards for health care IT, member of the National Council
Prescription Program and also board member of the HIT Standards Panel
that Nancy formed in response to the wording of the ONCHIT1 contract for
standards determination.

\>\> Matt McCoy: All the workgroup members' lines are now unmuted. If I
could ask you to mute your phones on your end when you\'re not speaking
just to cut down on chatter. I will read through the list of names, and
when I say your name, please introduce yourself.

First we have Kathleen Mahan from SureScripts.

\>\> Present. This is Kat Mahan. I run product management at SureScripts
and work closely with our certification process for all of our partners
and have my hands in several standards organizations, including NCPDP,
and look forward to working with the group.

\>\> Matt McCoy: And, operator, if you could, when somebody is done
speaking, just go ahead and mute their line back up. Next we have Robert
Kolodner from the Department of VA.

\>\> This is Rob Kolodner, Chief Health Informatics Officer from the
Veterans Health Administration, the Department of Veterans Affairs. I\'m
also on the HIPSA board as one of the Federal representatives and have
been active in the area of informatics for quite a while.

\>\> Matt McCoy: Okay. Lynn Rosenthal.

\>\> Lynn Rosenthal: I\'m Lynn Rosenthal from NIST, and my background\'s
in IT standards in the development of conformance testing. And we\'re
very active, I\'m very active in various health care standards, such as
HL7 EHR work, and a member of HIFSB.

\>\> Matt McCoy: Justine Handelman.

\>\> Justine Handelman: I work with the Blue Cross/Blue Shield
Association and staffing RCES (inaudible), who is a member of this
workgroup.

\>\> Matt McCoy: Steve Shihadeh.

\>\> Can you hear me?

\>\> Matt McCoy: Yes, we can.

\>\> Steve Shihadeh with Microsoft, Healthcare and Life Sciences
business in the U.S.

\>\> Matt McCoy: Josh Lemieux.

\>\> I\'m here representing David Lansky of the Markle Foundation and
Markle Foundation Personal Health Technology Initiative, which has been
very active in the past several years on research and best practices for
personal health technologies.

\>\> Matt McCoy: Patrick McMahon.

\>\> Patrick McMahon. I\'m policy counsel for Microsoft for health care
and life sciences.

\>\> Matt McCoy: Divet Murray.

\>\> Divet Murray, Program Manager for the Tri‑Service Infrastructure
Management Program Office within the Tri‑Service activity, management
activity. I support several MHS applications in my job and am very
familiar with the growing pains of ALSO.

\>\> Matt McCoy: Scott Serota.

\>\> President and CEO of Blue Cross/Blue Shield Association.

\>\> Matt McCoy: Anders Gilberg.

\>\> Anders Gilberg, Assistant Director of Veterans Affairs at American
Medical Association. I\'m alternate to staff to Dr. Nancy Nielsen, who
is the principal for this workgroup.

\>\> Matt McCoy: David McLean.

\>\> This is David McLean, CEO of RxHub.

\>\> Matt McCoy: Nancy Nielsen.

\>\> Hello?

\>\> Matt McCoy: Hello, Nancy.

\>\> Yes, Nancy Nielsen. I\'m an internist in Buffalo and Speaker of the
House of the American Medical Association.

\>\> Matt McCoy: Catherine Hong. Do we have Catherine Hong on the line?

\>\> This is Catherine. I\'m just attending to listen in and learn as
much as I can. I\'m with the data (inaudible) program with the VA.

\>\> Matt McCoy: Thank you. Tim Smokoff.

\>\> I\'m with Microsoft, and I run our strategy and healthcare
solutions group for Healthcare and Life Sciences.

\>\> Matt McCoy: Jody Daniel.

\>\> Yes, this is Jody Daniel. I am the Director of the Office of Policy
and Research for ONC at HHS.

\>\> Matt McCoy: John Loonsk.

\>\> Hi. This is John Loonsk. I\'m the new Director for the Office of
Interoperability and Standards in the Office of the National
Coordinator.

\>\> Matt McCoy: And Karina Brooks.

\>\> I\'m Director of Programs at the National Health Council. I\'m
actually sitting in for Myrl Weinberg.

\>\> Matt McCoy: Thank you. Dana and Nancy and Linda, that\'s who we
have on the line right now.

\>\> Did you miss a couple folks? Also listed there and didn\'t get
called, Helen Burstin from AHRQ.

\>\> Lorraine Doo from the Office of VA Health Standards at CMS.

\>\> Matt McCoy: Anybody else that I missed? Sorry about that; I didn\'t
have your names on my display. Okay. That\'s everybody present.

\>\> Matt, this is Nancy Davenport-Ennis again. And I would like to
thank all of you on behalf of Linda Springer and myself for your
participation in this call today. And I think as we look at our agenda,
we certainly see that we do have meeting deliverables that we would like
to accomplish, and we will only do that in direct proportion to the
amount of exchange of information that we can have while we\'re on this
call together.

I\'ve been asked as part of the setup to this call to review with you
what the broad charge is for the consumer empowerment group. And I am
referring to a document that was e-mailed out to each of us dated
January the 30^th^, entitled \"Consumer Empowerment Briefing Document,
Office of the National Coordinator for Health Information Technology.\"
And as we look at that document, in the center of page 1, there is in
bold a heading that says \"Charges for the Consumer Empowerment
Workgroup.\" The broad charge for the workgroup is that we make
recommendations to the Community to gain widespread adoption of a
personal health record that is easy to use, portable, longitudinal,
affordable, and consumer-centered. We have a further charge that is very
specific, and that is that we make recommendations to the Community so
that within 1 year, a prepopulated consumer‑directed and secure
electronic registration summary is available to targeted populations.

And if we look at our agenda at item 6, that simply says "March 7^th^
AHIC Meeting Deliverables," you\'ll see there replicated three action
steps that we want to begin addressing today to develop broader
statements of the workgroup, goals, activities, and deliverables to
refine our timeline and to identify key issues for the workgroup to
address, i.e., those barriers to effecting change such as policy
barriers and hidden conflicts that could be problematic as we try to
achieve the overall group. By way of background, let me just review
quickly that when the Community had its first meeting, there were
essentially 13 potential breakthrough areas. And within consumer
empowerment, they included my personal health record, my medication
history, my health record locater, and my registration information.
Those were the global areas that the consumer empowerment group was
charged with looking at.

If we looked in the area of health improvement, we moved immediately to
electronic health records, to e-prescribing, quality monitoring and
reporting, chronic disease monitoring, childhood immunization record,
and employee empowerment tools. The third category, broadly, was public
health protection, involving emergency information network,
biosurveillance and pandemic surveillance, and adverse drug report and
notification.

Out of these 13, AHIC chose the following to focus on this year:
biosurveillance, consumer empowerment, chronic care, and electronic
health records. As we look at the broad charge and the specific charge
for the workgroup, we might also find it helpful to review a chart that
was included in the material that was mailed out to you. Because in the
chart that was sent out, we were able to see identified for us those
items that would be helpful to us in the discussion today. The chart is
entitled "Health Information Technology Deployment Coordination." If you
look at the left‑hand side of that chart, it basically shows you from
the technology industry infrastructure steps that must be taken as we
move across to the right in order to transmit what the technology
industry can do into reality, as it interfaces with each of the four
breakthrough areas. So if we look at the top of the chart and we see
consumer empowerment, we know that our goal is to have a favorable
intersection with the IT Community in the area of standards
harmonization, compliance certification, the NHIN contract, the issues
of privacy and security, and that contract has been awarded to RTI and
the Health IT Adoption. We know that a consumer empowerment group works
together to achieve success in the areas of personal health records and
electronic medical records; that we are going to have to have a
coordination of policies, resources, and priorities; that we\'re going
to have to work with the Office of the National Coordinator and the
Health IT Policy Council and the Federal Health Organization as well as
the Community workgroups. And today, all of us together are
participating as members of the Community Workgroup. So as we look at
our broad charge for making recommendations to the Community to gain
widespread adoption of a personal health record, I would ask that we
also keep in mind that for that to happen successfully, we\'re going to
have to make certain that each of the IT issues addressed on the
left‑hand side of the chart is addressed in our discussions. And that\'s
why you will look across the landscape of our consumer empowerment group
and see a lot of representatives that are from the IT Community. So that
as we move forward in the discussion, we will be able to ultimately have
tools that are going to meet the needs of consumers, whether that is a
health care professional consumer or the individual patient consumer
that will work well with the IT system that is delivered to America.

I\'d like to pause now and ask if there are any questions from any
member of the working group that you would like to pose as it relates to
the background or the overview of the initial 13 breakthroughs, and
where we are now with the consumer empowerment group, and what our
charge is today.

\>\> Matt McCoy: One more time, for any workgroup members who would like
to make a comment or question at this point, press star 1 and we\'ll see
your name in our queue, and I will address you in the order in which you
indicate your interest in speaking. Operator, can you please open Steve
Shihadeh's line?

\>\> Steve Shihadeh: Can you hear me?

\>\> Matt McCoy: Yes.

\>\> Steve: I was struggling to keep up. I don\'t have the document that
outlines the 13 steps or recommendations.

\>\> Linda: 13 ‑‑

\>\> Steve: Did you send it out today?

\>\> Matt McCoy: Steve, I can send you the background materials, if you
just hang on.

\>\>Steve: I have a ton of background materials. I don\'t think I have
that document.

\>\> Linda: That was not sent in the package. I believe this was a chart
that was in the January 17th meeting materials.

\>\> For the Community as a whole.

\>\> For the Community as a whole. That was not sent in a package for
this meeting, specifically. So probably no one else has that.

\>\> Linda: Yeah, that\'s true.

\>\> Dana: We should probably get that out.

\>\> Steve: Thank you.

\>\> Linda: Thank you, Steve.

\>\> Matt McCoy: Can you please open Robert Kolodner\'s line?

\>\> Robert Kolodner: Can you hear me?

\>\> Matt McCoy: We can.

\>\> Robert: To follow up, this might be where using the Webcast showing
that particular slide would be helpful in the future if there\'s some
material, even some that may have been sent out, but one that\'s visual
like that would probably help us.

\>\> Nancy: Thank you, Robert.

\>\> Matt McCoy: Operator, can you please open Nancy Nielsen\'s line.

\>\> Hi. This is Nancy. I was just trying to say that I did not get that
either. And then when I heard it said once, I tried to get back out of
the queue, and I guess it didn\'t work that way. So my apologies for
piling on.

\>\> Matt McCoy: No problem. Operator, can you please open Karina
Brooks\'s line?

\>\> Hello?

\>\> Matt McCoy: Go ahead.

\>\> I\'m piling on, too. I had the same comment. I didn\'t receive the
materials. It could be because they were sent to Myrl originally, and
they weren\'t passed on to me. So just to let you know. Thank you.

\>\> Matt McCoy: Nancy, that\'s all the comments we have in the queue
right now.

\>\> Nancy: Thanks so much. We\'ll get that list of 13. I simply wanted
to refer to those with each of you on the call today so that you would
be able to see the progression of moving from the initial 13
breakthroughs through two meetings with the AHIC Community to now have a
more refined charge for the Consumer Empowerment Workgroup.

\>\> Matt McCoy: Josh Lemieux just got in with a comment. Operator,
could you open his line?

\>\> Josh Lemieux: This comment will probably be better for after we get
into the next section, which is looking at our scope and deliverables.
So I\'ll take a pass right at this moment.

\>\> Matt McCoy: Okay. Go ahead, Nancy.

\>\> Dana: The graphs and documents that were cited in Nancy\'s overall
view of the progression of the Community are available on the Community
Web site on the HHS Web site. And I\'ll be sending that out to you all
so you can review at your leisure. Thank you.

\>\> Nancy: I would now like to recognize Linda Springer. And Linda will
be reviewing with us many of the items that appear under item 6 of our
agenda, where we are talking about meeting deliverables. So, Linda.

\>\> Linda: Thank you, Nancy. And again, glad that we have a full
contingent of members on the line today. And I will make an effort to
start the conversation, but look to all of you to give us your thoughts
so that as a group, ultimately, we can start to examine our scope,
examine our activities and our deliverables. And again I think our
starting point is looking at the end with the charge. We\'ve got two
main areas for focus, one being the electronic registration summary and
the other being the medication history. So that I think that we\'re
starting out with some degree of focus; certainly you know when you look
at the topic like consumer empowerment, that\'s a pretty broad scope,
but it\'s been narrowed for us already to those two areas. So I would
suggest that we might want to work with each of those and again with the
idea that at the end of the day our job is to make recommendations to
the Community related to each one of those. And it\'s not that we\'re
going to be implementers, necessarily, ourselves. It\'s not that we are
the ones who are going to be users at this point, certainly we will be
at some point ideally down the road, hopefully, but at this point our
job is to be in effect researchers and come up with the recommendations
and so for each of those areas I think we want to develop a set of
criteria for how we come up with those recommendations. I think we want
to be keeping a list of issues for each of those. And again I\'d
encourage everyone to be developing that list of issues individually and
maybe there\'s a way we could, whether it\'s through a Web site or
whatever, be able to make everyone else aware of what those issues are.
But I think the best way to proceed is to take each one of those
separately and then start to develop goals, activities, and process for
developing what will ultimately lead to recommendations back to the
Community.

I think one of the ways we parse this as well is by the quarterly
milestones, we have an item in here related to the timeline. We\'ve got
to present some initial deliverables in March, and then we will be doing
it again in June, I believe, and roughly it\'s each quarter. So I think
we will need to group these in a quarterly basis. One other thing I\'d
point our attention to was the chart that we got in the mail, or
hopefully you all did get this one, which is the listing of the
meetings. And there\'s one for each month. And then the milestones are
in the far right column.

So you know, again, another way we could proceed is for each of the two
main areas, the registration and then the medication, that we could look
at the right-hand column for each of those and start to lay out how we
think it relates.

So if no one has any objection to that, I think we could proceed that
way. And maybe we could start first with the electronic registration
summary. And again, we\'re looking at recommendations so that within 1
year, a prepopulated, consumer‑directed, and secure electronic
registration summary is available to targeted populations. You could
almost take each word in that charge and come up with a set of criteria
and goals and issues that we could develop. But let me open it up for a
minute and see if there\'s anyone who wants to offer some thoughts with
respect to what our goals should be, and maybe even start with what
activities we need to do to ultimately come up with recommendations.

This is for the electronic registration summary.

\>\> Matt McCoy: Operator, can you please open Josh Lemieux\'s line.

\>\> Josh Lemieux: A question before recommendations specifically on the
registration summary. Just a question to the Chairs on how the process
and recommendation of this committee will feed into the requirements for
the four contractors\' prototype building, wheels this year are going to
be doing things on the ground to create the registration list or create
the medication list, and what impact this group will have on reviewing
the harmonization process for the use cases as those are being
harmonized and reviewing them after the fact.

\>\> I\'m going to suggest, Dana, if you\'re on the line, that might be
a common question across all the committees. Is there a set answer for
that?

\>\> Dana: Could you please open the line for John Loonsk? And John, if
you could address that, please. Thank you.

\>\> Operator: His line has been disconnected.

\>\> Matt McCoy: John, are you there?

\>\> Operator: John\'s line has disconnected.

\>\> Matt McCoy: Dana, John is not on with us right now. Do you want to
take a shot at this?

\>\> Kelly: I think we can offer some clarity at this point, and if John
joins us later, we can refine our response. But I think, essentially,
the draft use cases that have been presented so far that are working
with ONC are a starting point to specify some of the "who," "what," and
"how" for deploying some of the work that we\'ve funded. But the work
that\'s being done by the Community and by this workgroup in particular
will help their process by either validating or going in a different
direction that will then cause the contractors to refine their
activities to enable what we\'d like to accomplish within the next year
or so.

So in some ways, our process and the recommendations that this workgroup
comes up with will act as a way of validating or defining the use cases
that are being developed by the contractors.

\>\> May I ask a followup question? So will this working group be
involved in the initial harmonization process that is, I guess, under
way right now since the January 18th deadline to the contractors for
submitting their draft use cases? Will this working group have a role in
that up-front harmonization?

\>\> Kelly: I think they\'re on their own process and they\'re going to
have to continue to meet their deliverables in a timely fashion. To the
extent that we have anything that\'s public and final to inform what
they\'re doing, they will be considering it. But John Loonsk will be
acting as the liaison between what\'s happening with that work and our
office. I think, Josh, if you could sit tight for a second, we can have
an offline conversation on this and provide any clarity as necessary to
the entire workgroup.

\>\> Josh: Okay.

\>\> Matt McCoy: Nancy and Linda, right now, we don\'t have anybody in
the queue. Again, if they want to get into the queue, it\'s star 1 to
make a comment.

\>\> Linda: While we\'re waiting for other thoughts, let me suggest
that, with the registration summary in mind, let\'s look at that
right-hand column of the activities and milestones. Item 1 for this
quarter was, "Identify existing tools and solutions that could be
rapidly deployed, and present recommendations to the Community." That
would be one of the March milestones that\'s been laid out for us.
Let\'s talk about that one for starters: "existing tools and solutions."
Who wants to comment on any existing tools and solutions in this area
that they\'re aware of.

\>\> Matt McCoy: Operator, please open Divet Murray\'s line.

\>\> I just need a point of clarification. When you say "implement
existing tools," are we talking about the scope of all the participants
in this meeting? Are we talking about VA, DOD, Indian Health Service?
What\'s the scope of implementing the tool set?

\>\> Linda: It says actually, "Identify existing tools."

\>\> Divet: For instance, for DOD, for establishing eligibility for us,
we basically have the (inaudible) Defense Enrollment Eligibility
Reporting System, DEERS, is that what you\'re looking for.

\>\> Linda: Exactly. Could you comment a little bit about that?

\>\> Divet: Basically, in DOD, for a beneficiary to get care before they
come into the facility, the hospitals or clinics have to verify that
they\'re eligible for care. And this is a database where we have
everyone\'s name\--the service member as well as their family
members\--and they verify that information that they\'re eligible for
care. Basically, that's the simplest way to explain that particular
system.

\>\> Linda: Good. If we were going to create an inventory of existing
tools, that\'s one within the government that we\'re aware of. How
populated is that, and how long has that been up and running?

\>\> Divet: I can\'t give you exact timeline, but I can find that out
for you. But I\'ve been in the Army for 22-plus years, and it\'s been in
existence.

\>\> Linda: Okay. So I think some information about that one would be
helpful to support the inventory for item number 1. Other existing
tools?

\>\> Lynn Rosenthal: I have two questions. One is more a point of
clarification. These milestones are quite specific and detailed, and I
was wondering where they came from, how they came about.

\>\> DAN GREEN: This is Dan Green with Linda Springer. Part of it came
from the work that AMCHP did in putting together the concept of the
breakthrough workgroups, and the second part came from a meeting, an ad
hoc meeting that was held on January 4^th^. A group of us sat down and
brainstormed basically about this consumer empowerment task. And some of
these ideas and goals and objectives came out of that -- was presented
at the last AHIC meeting on January 17^th^ and approved at that meeting.

\>\> Lynn: Thank you. My other question is, so as I understand it, part
of the objective of this first milestone is to get an inventory of
various tools and solutions that are already existing. And I would like
to maybe propose or suggest that along with the tools, we should have
agreed upon the information about that tool that we want to collect so
that across whatever we collect in this inventory, we\'re gathering the
same types of information that we want to find out about each of the
tools. And we should identify what that information is.

\>\> I think that\'s a great idea, and maybe we should do that as a
first step. And I want to ask people who were involved in the setting of
these -- and I think there are a couple here -- if there was any
discussion about what particular items should be included in the
inventory.

\>\> DAN GREEN: I think we -- and some of you were at that meeting, and
may be able to add a lot more than I can to it. But there was a
wide-ranging discussion on the various types of systems that are
available, personal record systems that were available to people now and
their different uses, and what might be a starting point for us. And
yes, those were the kinds of things that were discussed and I think do
exist in some meeting notes that would maybe form a starting place for
this workgroup to use. Sources of systems, how the system operates, and
then the data elements in those systems. What we didn\'t get into is how
to synthesize and standardize those across systems, which is, of course,
a difficult process. Are there others that can add to that?

\>\> Nancy: I\'d like to pose a question. We have a number of
representatives today from organizations that are either insurers or
they do currently offer some type of medical care to consumers that
would require the maintenance of some form of electronic registration or
electronic registration summary. Perhaps if we could get folks who are
on the call with us today to just feel comfortable with discussing some
of the primary features of the electronic tools that are currently being
used to capture registration information about consumers, that may be a
platform from which we could have a very good discussion.

\>\> Matt McCoy: Nancy, on the last point, we had Lorraine Doo waiting
in the queue. So could you open Lorraine Doo's line?

\>\> Lorraine: Thank you. I think it actually ties in with what Nancy
was beginning to get at. HL 7, in their PHR work, which Josh is part of,
had begun an inventory of available PHR tools,, and I think AHIMA had
done some work as well. We had actually taken those lists and created a
pretty comprehensive spreadsheet, one to validate that those
organizations still existed, and then we highlighted what we thought the
key features were, such as medications, ability to do e-prescribing,
diagnosis, and procedures. I think about 10 or so criteria. And it
sounds like that\'s the same kind of exercise that you may have already
begun or that we would need to do in terms of identifying not only the
tools but the capabilities that they each provide. And that\'s going to
be part of the whole standardization.

\>\> Dana: Is that something that could be made available to the members
of the workgroup?

\>\> Yes, I\'d like to clean it up a little bit because it\'s been
internal, but I\'d be happy to share it.

\>\> Dana: That would be a great start. Let me ask you: is that public
as well as private capabilities?

\>\> Lorraine: You mean in terms of what services they offer?

\>\> Dana: No, in terms of the organizations. In other words, we just
heard about the Department of Defense; would that be included in there?

\>\> Lorraine: Uh‑huh. Yes, it\'s everyone that was on an original list
that we had participated in, and then we did our own research and added
to it. And then, of course, we took it sort of to a whole other level,
because we wanted to know how many were free and how many had a charge
and was it a subscription charge, one-time charge, what did you get for
that, what kinds of things got printed out, because you control access
to other providers and other family members, and we began to drill down
on things that we thought might be important because we were specific to
the Medicare population.

\>\> Yes, we have VA and DOD and a number of the other government ones
as well as private-sector and ones that are free and ones that have a
charge.

\>\> Dana: I think that would give us a great step forward in dealing
with this first milestone, if you could get that in a form we could
distribute, it would make a lot of sense for us.

\>\> Lorraine: Okay.

\>\> Thank you very much.

\>\> Matt McCoy: To give you an idea of the load in the queue right now,
we have three people waiting to make comments. Would you like me to take
the next one?

\>\> Justine Handelman.

\>\> This is Justine from Blue Cross/Blue Shield. I wanted to chime in.
Many of our plans offer personal health records, and many commercial
health insurers offer personal health records. I\'m sure all of you know
the focus of the workgroup is to have commonalities exist, because there
are no standards that everyone operates under. But I like the
recommendations that were made by Lorraine. I think it would be helpful
having some sort of spreadsheet or document where you can look at the
commonalities, because we know they do exist among records. They\'re
just not all done the same. And perhaps looking at certain data domains,
that makes sense. For example, among the personal health records that
are offered by health plans, there are commonalities among the data
domains in terms of system-populated data where the insurer populates a
health plan. You have certain information that goes in regarding the
encounter, the data pertaining to an individual encounter with the care
that they receive. The medication information is another domain, such as
the name and the dosage. There\'s a domain for the provider, with all
the information regarding the clinician and the services that were
provided to the facility where services were received. There\'s a
commonality of basic benefit information, which is eligibility, copays,
and deductibles, and then also immunization is another commonality. And
then many of the personal health records have self‑populated or
self‑reported data, and there\'s about four domains where we see
commonalities: patient information, being demographic and personal
information; family history, where you show possible health threats and
familial risk assessments; physiologic information characteristics such
as allergies, blood types, height and weight; and health risk factors,
such as habits, smoking, alcohol consumption. So those are areas where
we see commonality, but at this point there are a lot of differences. So
I think the idea of having something everyone can look at and see where
there are commonalities and what information is out there would be very
useful. And in addition, I know many of the groups -- I think Lorraine
mentioned HL7 -- do have a PHR workgroup looking at this. We know there
are standards out there for many of the things I mentioned. Could there
be a look at what standards exist and how they tie into this?

\>\> Nancy: We\'ll follow up with you as well to make sure that we\'ve
gotten that information and taken that into account. And I think that\'s
important to look at both the commonalities as well as the differences,
and one of the things that we\'re looking at is solutions that could be
rapidly deployed according to the way the milestone has been given to
us. So certainly, the commonalities give us an idea that these are
things that have been perceived as doable or certainly requirements, and
so I think having that in a spreadsheet will make it easier to make that
assessment.

Matt, others that are on the queue?

\>\> Matt McCoy: Yes, we have five people in the queue right now.

\>\> David McLean: I just wanted to reinforce some of the things that
Justine just said. But also, as we talk about the issue of looking at
being able to access and provide information across the board, everybody
was familiar with what was built with Katrina Health in terms of
medication history. From our hub standpoint, the ability to have the
capability of technology to go in and access information, again whether
that\'s eligibility information or expanding that to registration
information obviously from the medication history, that\'s what was
deployed in Katrina Health. But to be able to access that information by
keeping the integrity and proprietariness of government files or private
insurer files or consumer files or whatever, that the technology is
there to do that similar to the financial services industry with ATMs.
So for example, with our hub, we have about 170 million people we have
access to in terms of specific drug eligibility, medication history.
Obviously technology such as that is further developing and the
technologies to be able to deploy those sorts of things to maintain the
integrity of (inaudible) basis will be important.

\>\> Dana: I think that\'s right. And certainly it\'s alluded to in the
handout we had sent to us for today, the briefing document. And those
are important characteristics that we\'ll want to pick up as we do and
review the inventories for those types of features. One of the things
that strikes me as we go through and look at the grid and look at the
features is that we\'ll want to be matching those up against our issues
list to see if those features are addressed. Obviously, there are things
like privacy and who has access and things like that, and when you look
at that list of issues that we\'ll be developing, we\'ll need to check
those and cross‑check them against the features that already exist. If
they\'re not there, we would need to put in something that would
recognize that there\'s something to be dealt with. Others that are in
the queue, Matt?

\>\> Josh Lemieux: Hi. Just wanted to also say that we here at Omni
Medics, on behalf of the Markle Foundation, have been collecting an
inventory of PHRs and would be glad to share it. It sounds like
Lorraine\'s team at CMS has already expanded on that and made that
really good. I just want to emphasize points that have already been
made. It\'s important not to just focus on what is happening at the
application level, since there\'s a very wide and diffuse availability
of personal health applications/ The standards and records that are
already digitized and networked are something that we should definitely
put within our purview of existing tools under review, because that\'s
where you would have the ability to connect applications and enforce
some level of standardization across the wide range of applications.

\>\> Nancy: Good. Thanks.

\>\> Robert Kolodner: One of the things that\'s exciting about this
workgroup is we have a lot of good people who have been very successful
and done lots of things. So my sense is that when we\'re given a task as
we just have been that our first tendency is to jump in and start
problem solving. And while I think that that\'s important to do as part
of the staff work and trying to figure out what is going on and what is
out there, I think even more important is for us to identify and agree
on a couple of key principles that will guide whatever solution goes
into place. For example, the idea that we\'re focusing on personal
health records is important. And yet there may be some individuals who
don\'t want to have a personal health record, but who do want to have
some way of having this electronic form filling based on their computer
at home and carrying a thumb drive or something like that. So those
types of things we can get into in terms of details. But if we
understand what it is we\'re trying to do in terms of the principles,
that may help to frame the solutions that we then go after. Thank you.

\>\> Dana: I want to ask those who have been involved in the AHIC
broader work, have there been any guiding principles that have been
developed yet?

\>\> Matt McCoy: I just want to jump in for a second and let the group
know that Secretary Leavitt is now on the line. And Mr. Secretary, your
line is open, so if you would like to speak at any time, you can do
that.

\>\> Secretary Leavitt: In fact, maybe I\'ll take the opportunity now to
tell you hello and thank you very much for your early convening. I would
like to add emphasis, if I could, to the urgency I\'m feeling for your
work to proceed, particularly so we can see early deliverables
enumerated at the March meeting. I know that requires a substantial
amount of work. I just heard the last part of the need for principles
upon which to operate, and I know that that will be an important part of
it.

I also want to express a sense I have that this is a critical
cornerstone of building the overall vision, because it\'s the place I
believe we can begin to create consumer demand. And that\'s one of the
things that I believe this movement has lacked: lots of vision; lots of
belief in its underpinning, underlying value. But we have not yet
generated broad consumer demand. And I believe with the work of this
group, we can begin to stimulate that. So I don\'t want to interrupt the
call beyond that. But just to say thank you and I\'m looking forward to
hearing your report.

\>\> Linda: Thank you, Mr. Secretary, and I\'m just coordinating this
segment along with Nancy Davenport-Ennis.

\>\> Secretary Leavitt: I don\'t want to disrupt the call. I\'ll excuse
myself, but I want you to know I\'m mindful of your work and
appreciative of it.

\>\> Nancy: Thank you.

\>\> Secretary Leavitt: Goodbye.

\>\> Nancy: We were just talking about guiding principles, and I want to
ask the question if there\'s already some set of guiding principles that
may have been developed in the course of the AHIC work that everybody is
familiar with.

\>\> Nancy Nielsen: This is Nancy Nielsen from the AMA. I want to say we
were so happy to be on the Consumer Empowerment Workgroup. It just ‑‑
it\'s a thrill, actually. We have looked at these issues from not only
our own needs but trying to figure out what is best for patients. So I
think that the inventory is going to be extremely helpful. I want to
raise a little different issue, however. I want to be sure that if any
of the people on the workgroup have any vested interest, commercial or
otherwise, in any particular product or application that is out on the
marketplace, that that be shared with the rest of the folks, because
some of you all may know what each other\'s commercial interests are in
this regard and others may not. So if I could just ask that that be
routine for us, that we know ‑‑ I mean, for example, if I start talking
about something that the AMA has a commercial interest in, I should be
expected to so identify that, and so you would know what my conflict of
interest was.

\>\> Dana: Thank you, Nancy.

\>\> Steve Shihadeh: This may be a little redundant, but I think
there\'s an existing inventory of PHRs starting with the CCR work done
up in Massachusetts, MEDEM, and all those things that Markle said
they\'ve cataloged. We should start there. Number two, based upon our
experience in developing product offerings like this, we ought to take
an attitude of "good enough" and try to make a good Version 1 release
and not try to make it fit, or it will take 10 years. We ought to just
come up with the basics of it and get it out in the marketplace as
Release 1 and just try to work with it and figure out what isn\'t going
to make it and what is. But we could work for years to come up with a
perfect one, and that would be a mistake in our experience.

\>\> Nancy: I think what you may have articulated is something that
might be a guiding principle for us to consider. And I think when we\'re
done going through everyone that\'s on the queue, I want to come back
and talk about maybe some assignments related to some of these
activities, and guiding principles is certainly one of them.

So let\'s move back to the queue, Matt.

\>\> Ross Martin: In terms of conflicts of interest, I\'m not aware of
any where I have a personal stake in any particular products. I do have
a personal stake in making sure that this stuff happens, as I have many
family members who really depend on this working, and that\'s probably
my overriding financial conflict, is right now it doesn\'t and we spend
a lot of money on things that we otherwise would probably spend less if
we had this.

So in light of the conversation about the inventory, I would like to
suggest that in addition to these inventories that we\'ve already
identified through Markle and others, that we develop a survey or a set
of questions and issue it through the health IT listserv that already
exists through the ONC. We can ask people to identify any additional
offerings, be they from public or private sources, so that we can get a
full disclosure or a full opportunity for responses. The difference
between this activity that we\'re doing today and what\'s been done in
the past is there are an awful lot of eyeballs on the activities of the
Community. And it will be helpful to use that benefit to make sure that
we\'re getting as many responses as possible to make a comprehensive
inventory. And then, secondly, the good-enough version that was just
spoken about is a real key.

I\'m speaking about this reflecting on my experiences with the HIT
Standards Panel use cases as we develop these for consumer empowerment.
I\'ve been very involved with that. And it\'s very easy to get a rapidly
creeping scope of what could be included. We need to identify what the
real priority is, and I think the real priority, as Secretary Leavitt
intimated, is getting consumer buy‑in. The simpler the tool for which we
can get widespread adoption, the better off we\'ll be in keeping that to
registration information and medication history as has been outlined
initially, and then rapidly building from there. Thank you.

\>\> Nancy: Anyone else?

\>\> Matt McCoy: Two more people in the queue.

\>\> Divet: I\'d like to make the following comments adding on to
several other comments. What I\'m concerned about as we do this
inventory is whether we as a group understand what are the barriers to
the audience that we\'re trying to focus on to access these tools, and
whether the tools we\'re offering are the things that the customer
actually wants. And I think that that is going to be quite a challenge.

\>\> Nancy: I think you\'re right, and again, one of the things that
we\'ll be compiling here along with the inventory and the guiding
principles will be our issues list.

\>\> Okay.

\>\> Nancy: I think that\'s one of the things that should be on that
list, the desirability to use, public, variety of other things. This
inventory will need to be considered through the lens of those issues
and barriers and challenges.

\>\> Divet: Because to prepare this group, I went out and read several
white papers by Gartner. That\'s what they emphasized for a lot of the
tools that went out there. A lot of the companies didn\'t do their
homework for understanding the target audience's barriers and their
perception of why they couldn\'t use something, even though it might be
something they wanted to use, but they perceived some either
self‑imposed barrier or an actual barrier that prevented them from using
it.

\>\> Right. Good point.

\>\> Lynn Rosenthal: Thank you. This is Lynn Rosenthal. I\'m getting a
little bit nervous with this inventory of tools and how we\'re
discussing it. And what makes me nervous is if we create any type of
inventory and put tools on there and leave anybody out, it looks like
this list that we\'re creating is almost our list of "Here\'s the ones
we\'re endorsing." What we\'re trying to do, is say, "Here are the ones
we know about and you may want to use it." But rather, it\'s an
inventory so that we can assess from the tools that are out there the
types of functions and capabilities and the type of information that
these tools are allowing to be electronically collected and used. That,
in fact, is what we should focus on and come up with a recommendation or
a list of: "Here are the functionalities; here are the capabilities.
Here\'s the type of information that tools of this type should be
capable of doing." And then let the marketplace figure out whether or
not they have built those tools, not have us have a "Here\'s a list of
those tools that we know of."

\>\> Nancy: I think that\'s right. Our charge is not to come up with the
Good Housekeeping Seal of Approval. The purpose of the inventory and
with all the characteristics and features identified in that common
structure is to help us develop the recommendation on features and
characteristics that a desirable tool would have and also to use it as a
check against our set of issues and concerns. So I think you\'re right:
it\'s not that we can say we bless certain ones and go ahead and use
them for that menu.

\>\> I think that needs to be very clear when we create that list so
it\'s not misrepresented, misunderstood, and taken to be what it\'s not,
especially since this list does not have to be truly comprehensive; it
just has to be representative.

\>\> Nancy: I think that\'s all right. And at some time, we can mask the
names. We don\'t even need the name on there.

\>\> In fact, we may want to.

\>\> At some point, we will. Not from the start. Certainly the
presentation, once we get closer to the March point; that will be a
factor.

\>\> Thank you.

\>\> Nancy: I\'d like to make a couple of comments around that
discussion. Lynn, I concur completely with your evaluation that, indeed,
we need to try to assess these tools and do that against a certain set
of criteria. And I would call everyone\'s attention back to the broad
charge for the workgroup, because as we\'re assessing tools, we want to
measure them in terms of, "Are they easy to use? Do they have the
portability features that are going to be required, and if so, to what
extent? Are they longitudinal? Are they affordable? And are they
consumer‑centered?" And as I\'ve been listening to a number of the
suggestions that have been made that are outstanding, I suggest that the
staff that\'s on the call with us today develop a matrix. The matrix
would collect in one format all of the thoughts and the suggestions on
how to develop this electronic medication record. Each of you on the
call today could advance via e‑mail to us your thoughts in these areas,
as it relates to that broad charge and as we\'re trying to collect this
resource guide of tools that currently exist in the country. If we could
do that, there would be one central process that we could use to collect
the information, and then we could immediately feed it back to each of
the members of the working group that could in turn add more information
to the appropriate areas. So I\'d like to know if there are discussions
around the idea of a matrix as one process we could use to try to
capture some of this information.

\>\> Linda: I\'d like to just second that and suggest that there\'s a
contractor who has been working with the effort and who I hope will be
available to us to help with that kind of compilation work. But seems to
me that we can ask the contractor to build that grid and maybe as a
starting point look at an existing inventory. The contractor would be
the compiler for us and would receive additional information as it comes
in and then get it distributed back out to us.

\>\> Nancy: I think it would be certainly helpful.

\>\> Matt McCoy: A few more people have jumped in to the queue for this
discussion.

\>\> Katrina Brooks: First, I think the idea of a matrix is a good idea.
But getting back to the need for guiding principles. And I think I've
found them. The Markle\'s Personal Health Technology Council came up
with a list of guiding principles or consumer principles, they call
them, for system design that might help guide that vetting process in
terms of finding an inventory of tools to use. Is anyone else familiar
with them?

\>\> Matt McCoy: We have Josh Lemieux, who is calling in for David
Lansky from the Markle Foundation. Please open Josh Lemieux\'s line and
perhaps he could speak to that.

\>\> Josh Lemieux: First, I should mention that David Lansky would very
much likely be here today and would be much more articulate than I, so
it\'s just your loss today, but he\'ll be at the next meeting. Yes, the
Personal Health Technology Council did, last October, issue a very
simple set of principles. I can send that, the link to that, to staff,
and it has to do with the consumer having convenient, affordable access
and being able to control information and share it.

And so I think that that group of multistakeholders convened by the
Markle Foundation would submit that as a potential starting point for
reference to this group. And while I\'m on the call, I had one more
comment. It feels a little bit as if we're starting from scratch with
this group, which may be a good thing in terms of creating a new matrix
for both inventory of applications that are out there, as well as an
inventory of suggestions for how a registration list and medication list
could be prepopulated to meet some of the ambitious requirements that
are part of our charge. But I just wanted to come back to the point that
a lot of thought has gone into the responses to the use case that are
very specific to this exact charge. And I wondered if one of the
reference points for this group would be actually reviewing the
submissions by the contractors for the prototype since those are very
detailed approaches to these things?

\>\> Nancy: Josh, I appreciate your comments about the set of principles
that have already been developed by Markle. Let me share that the
working group that was assembled prior to this working group to try to
give initial input to those of us serving as Co‑chairs did indeed look
at those Markle principles and found them to be very beneficial. And
those principles actually helped in the initial development of a matrix
that the consumer empowerment representatives did submit to Secretary
Leavitt at the very first AHIC meeting we had in January. We found those
principles to be very useful in building that particular matrix. In
terms of your suggestions that we review some of the case documents,
certainly that may be a helpful process as we move forward and we could
simply procure those, take a look, and forward them to members of the
workgroup for review and comment.

\>\> Linda: I want to ask a question for my own background. I apologize
if you all know the answer to this. I won\'t belabor it. But sounds like
some of the samples of principles that have been offered are what I
might call criteria for what the consumer would look for. Like privacy,
security, things like that. Another take on guiding principles would be
the principles under which we operate. In other words, we recommend that
these things be developed beyond just criteria for what the consumer\'s
looking for, but also just more along the lines of the one that was
mentioned earlier about good enough for Version 1, that type of thing.
So I think it may be that we could, at least what I\'m hearing, and you
know I\'m not wedded to any of this, but there might be two lists, one
that\'s a general set of guiding principles for how we would operate,
but then secondly a set of criteria for what a "good" record or "good"
registration summary or, in the case of the medication history, what
those criteria that should be met. Then third would be the inventory
with the information on the characteristics of the existing products and
tools. Fourth would be the set of issues that we would raise and
barriers and things like that that we would need to make sure are
addressed. And issues as opposed to criteria; I see those as two
different things. And again, we\'d have our inventory and then the kind
of overarching guiding principles for how we operate and that we think
are the sort of things that should be looked at as we develop the
recommendation. So I would just offer as a way to move forward that we
work with those four lists, get our contractor to help assimilate and
put into a common format anything that either is already been worked on
or that we could submit to the contractor, they could cycle it back to
each of us; we could keep adding to it. We\'d have a chance to start to
digest it and look at it. And that might be a way to go forward. I would
suggest that we have one set each for the two target deliverables, the
registration and the medication. So it\'s a framework for how we could
keep this thing moving and start getting things in a coordinated
fashion. I just throw that out there and see if anyone wants to react to
it.

\>\> Matt McCoy: We have a couple of comments that have been in the
queue since your last piece. So we\'ll clear them out first; then there
might be a few more.

\>\> Steve Shihadeh: Two quick things. I like the format that Linda just
discussed, so we have a strawman to look at to see what works and
doesn\'t work. And to the comment that we don\'t want to name or
reference these existing PHRs, I think some of the comments were
misunderstood. I don\'t think we should mention the existing PHRs at
all. Rather, I thought what we were going to do was inventory them to
see what were the common data elements that made sense from a
registration standpoint or from a medication standpoint and nothing more
than that. So we could then go out and say, "Okay, in the registration
area, this is what Version 1 of a working system should have." So we
shouldn\'t go near naming or Good-Housekeeping-Sealing anybody\'s
existing PHR.

\>\> Dana: Thank you, Steve.

\>\> Matt McCoy: We have one more comment in the queue.

\>\> Lorraine Doo: Boy, it\'s quite a discussion we stormed off with. So
that\'s great. The original intent in even recommending the building of
an inventory was really just that, to begin to build it, because ours is
certainly nowhere near complete. Probably Markle is looking at theirs on
an ongoing basis. AHIP is probably creating something. So it was really
meant to be just the beginning of looking at what existed and what they
offered. It sounds like we\'ve cleared that up as well. I think,
personally, one of the reasons it\'s good for at least this group to see
the names of the organizations and the Web sites is to actually test
them out. I know there\'s no way for us to poll the people on this call
to find out how many people have actually ever attempted to use either
an online registration or medication or a PHR list, but any of these
tools to actually begin to use it. But that exercise, I think, is really
critical to this group being able to make good recommendations is to
have the experience behind it.

\>\> Linda: I\'d like to suggest we have other items on the agenda, and
unless I hear some objections, I\'d like to work with the contractor to
have them get something out to each of us to identify the mechanics of
how they want to get information from us to build each of those four
sets of information. I think I\'d ask that each of us who has something
to offer in each of those four areas, guiding principles, the
consumer\'s criteria, inventory, or issues start to think about those.
Then once we hear from the contractor on how to submit them, that we\'re
ready to get them in. Our next meeting is actually February 21^st^. So
certainly we\'ll want to have a pretty fulsome list. It will be a living
list, but I think we want to have something that certainly is compiled
and has been out to each of us for further thoughts and maybe some
additional submissions well in advance of the 21st. So that\'s really
only about 3 weeks.

\>\> Kelly Cronin: Since I\'m here in the room with Ross I want to make
a follow-up comment to Linda\'s suggestion. I\'ll certainly try to put
together a process and involve everyone who wants to be involved in
trying to get these four sets of documents together. But I just wanted
to mention that we\'ll need very quick responses from everyone to try to
get something drafted, including the various approaches on how we might
proceed. And we really -- we\'ll have to get something together within
the next week or so if it\'s going to be helpful to the group in making
some decisions on what recommendations they\'d like to consider the week
of February 21st.

\>\> Ross: Very profound things. In light of our Chair\'s plea to move
on to new topics, I can defer unless you\'d like me to continue.

\>\> Linda: No, go ahead.

\>\> Ross: Now I\'m stuck. I better be profound. One suggestion I would
make, in light of the previous comment about finding out which specific
things we want to have our solution provide in terms of elements: you
know what kind of things to collect. I would suggest that we stay
focused on domains of subject, of information saying that, for example,
demographic information, obviously, is going to be part of that
clipboard. But are we really going to start on this committee level
about are they Mr. and Mrs. or Ms.? I\'d like to defer those sorts of
field elements to the HIT Standards Panel Technical Committee that would
be responsible for that. But let\'s tell them what domains we choose are
most important to focus on for this first-round good-enough solution.

I like the idea of using ourselves as guinea pigs and would suggest that
we actually try to make that as a principle or priority, that we really
try to look at this stuff with the caveat knowing that the reason that
not many people use personal health records right now is that they
can\'t talk to anyone very well right now. So there\'s a limited utility
in them, unlike things like Quicken today, where you can get a lot of
this stuff automatically from your banks electronically. And then third,
I\'m wondering if we might want to have some little subgroups within our
workgroup to work on these deliverables, because they do require a fast
turnaround. Not that they would provide the final answer, but they would
provide the first draft for everybody to review and comment on.

\>\> Linda: On that last one, let me ask for more thoughts. I think
that\'s a way to do it. There\'s nothing precluding anyone from being on
more than one if we had subgroups devoted to each of those four lists.
Any reaction to that?

\>\> Dana: Because this is a federal advisory committee, all meetings
have to be open to the public. And in order to have these workgroups, we
also have to give public advanced notice. They have to be open. What
might be the best way to do it is to send your comments to Kelly and
then let our office organize it and then send it back out. Again, we
have to honor the FACA process, and everything has to be open and
transparent.

\>\> Linda: That\'s fine, Kelly, if anybody who has something they feel
they have to offer on any or all four should participate in that way.

Nancy, I\'m just going to talk about timeline for a minute.

\>\> Nancy: Absolutely.

\>\> Linda: And on the agenda, we have an Item Refine timeline, and
again our next meeting is February 21^st^, and so I think we\'ve got a
lot of ground to cover with our four lists between now and then, and
I\'m certain we\'ll all be thinking and come up with other things. And
then from that point, our next meeting, I believe, is March 7^th^, where
we\'re to present findings and summary and our recommendations to date,
obviously those aren\'t the final ones, but I think it summarized what
we\'ve seen and been doing so far. And I think that also we\'re required
at that point to present a timeline for how we get from that point to
the very end of the project, the final report, which is scheduled for
December 5^th^. So if we can get everything we\'ve talked about so far
by February 1^st^, I would suggest we would have a better sense of how
we could proceed along the rest of the calendar what we\'d present for
March 7^th^ and the other quarters. Nancy, I don\'t know if you gave
more thought to that.

\>\> Nancy: I think you\'re right. First of all, we have to see what
type of responsiveness each of us within the working group can have to
the charge today of trying to cooperate with getting information in,
allowing us time to have that placed into a matrix, returning it to
everyone in the working group for further comment and evaluation. I
think as we see the responsiveness there, we\'re all going to be able to
work together to build a timeline that\'s going to work for this working
group.

\>\> Linda: I think that covers those first two items. Nancy, I\'ll turn
it back to you, if we want to start talking about some key issues.

\>\> Nancy: I would like to do that. Thank you so much. If you look at
the agenda for today\'s group, one of the things we wanted to have a
discussion about are the key issues that really do constitute barriers
to effecting change as we try to develop both the electronic
registration summary and to complete the development of medication
histories. When we had a conversation last week with Chairmen across all
the AHIC committees in preparation for these calls, we agreed that we
need to be working with you to identify the largest stones in the road
that may indeed be policy barriers, they may be hidden conflicts of
interest that could indeed stall any initiative that we\'re trying to
move forward.

So what I\'d like us to spend the remainder of this call doing is having
a discussion and letting each of you on the call give us your first
impressions of the primary barriers that you see we\'re going to have to
deal with as we try to bring to maturation a recommendation for the
Community for electronic registration summaries and medication
histories. So the floor is open for that discussion.

\>\> Divet: Hello, I think the biggest thing that we\'ll have is
barriers exchanging information among organizations. So the regulations
that are involved in establishing those relationships with other
organizations. I think that\'s one of our biggest barriers, because it
takes a lot of time to establish that relationship. If I go to -- just
as an example, if I go to a facility and it\'s a facility I\'ve never
been to before, it\'s very hard for that facility to get my information
from a facility I attend to most of the time, if that facility doesn\'t
have a relationship with that other activity. I think that somehow we
need to streamline the way they can exchange information.

\>\> Nancy: So maybe streamline and look at the interoperable features
of that process.

\>\> Divet: For instance, under HIPAA, a covered entity has the
responsibility to verify that the information that they give to another
entity is going to handle that information in a certain manner. So in
order to do that, it\'s like you have to actually have an agreement with
the entities that you\'re exchanging information with. And I think,
somehow nationally, we need to come up with a way that maybe someone
gets a certain category of their facility, being given a certain
category level for privacy and security, so that you know, if you\'ve
never done business with that organization before, that they\'ve been
cleared at a certain level, which right now each individual activity is
responsible for verifying that themselves. Does that make sense?

\>\> Nancy: It does absolutely. And I think you\'ve taken us to an area
of discussion that we\'ve visited in the past, and that is the issue of
privacy and security and how do we deal with those hurdles, and bringing
up the issue of HIPAA, and citing what is currently required is also an
issue that is a barrier that we may have to deal with.

\>\> Divet: Right.

\>\> Nancy: Any comments to Divet\'s comments?

\>\> Lynn Rosenthal: One of the barriers to exchanging information is
the fact that many of the tools and solutions today are basically still
types in that the information is in the single format that can\'t be
read by other organizations or other systems. But the other barrier that
I wanted to sort of change over to was more of the consumer themselves
being comfortable with using the technology that this type of
registration or medical list would require a consumer be aware of. The
younger you are, the more adept you are at using the technology, I
guess, but more of our older population shy away from using the Internet
or can\'t use the Internet for various reasons and can\'t use some of
the other technological equipment and systems that we all take for
granted. Thank you.

\>\> Matt McCoy: Can I remind everyone who is using a speakerphone,
speak up close and loudly into your phone.

Could you please open Steve Shihadeh\'s line?

\>\> Steve Shihadeh: Thank you. I want to talk about access for a moment
and HIPAA. One thing about the HIPAA legislation is people have the
right to opt out. And if they do, then that sort of opens up a lot of --
it makes it easier to move data. The moving of data and coming up with a
standard isn\'t that hard. In the financial services world, Microsoft
and Quicken came up with a standard that is called QFX, which is how all
of us get bank records populated in our personal financial health
records, if you will.

And then finally, I think the two big barriers we\'ve got to figure out
are National Patient Identifier, because in reality, for it to work, a
registration set or a medication set has to be linked to me in an
absolute way; and the second thing is figuring out how we are going to
promote the use of downloading or autopopulation. So National Patient
Identifier and autopopulation are two big barriers we\'ll have to figure
out.

\>\> Nancy: Thank you very much, Steve.

\>\> Justine Handelman: Hi. I wanted to echo a comment just made a
little bit earlier on consumer use of PHRs. From our plan experience,
the consumer use has been very low. That\'s been one of the biggest
barriers of how do you get consumers to use this and how do you get them
to see the value. And some focus groups that our plans have done have
shown that there are some populations at least initially targeting that
have seen benefit, and those primarily are those with chronic conditions
who can really use this to help manage their care on a day‑to‑day basis.
Parents with young children that want to track their immunization and
their health care, particularly as they\'re going to schools and camps
and other things, and also individuals who are managing their elderly
parents\' care that can have access medications, encounters, etc. So the
whole issue -- I know it\'s been raised -- of how do you get consumers
to use this and see value; is there a focus, because I know that\'s part
of the specific charge; do you look at populations of where there might
be benefit and build from there. So that\'s what we have from our
experience.

\>\> Nancy: Thank you.

\>\> Matt McCoy: The queue is empty, Nancy.

\>\> Nancy: I would like to ask that each of us on the call please
return to the January 30^th^ consumer empowerment briefing document that
was sent ahead to each of us in preparation for the call. And if we move
to page 2 and page 3, I think we\'re going to find some useful questions
that may help us as we\'re dealing with the discussion around some of
the barriers and some of the fundamental information that we\'re going
to be trying to get to complete this work project. If I look on page 2
with you, and we\'re asking the question, "What is already being done
around the issue of medication history?", they\'re citing that
KatrinaHealth.org is a secure online service helping people affected by
Hurricane Katrina, working with the health officials to gain access to
their own electronic prescription medication records, authorize
pharmacists and doctors can get records of medications evacuees were
using before the storm hit, including the specific dosages. The
information provided on this Web site is meant to complement, not
substitute for, complete information provided to the doctor or
pharmacist by his or her patient or client. To protect patients\'
privacy medication information about medications for HIV and AIDS,
mental health issues and substance abuse or chemical dependencies is not
available through KatrinaHealth.org. In addition, the American Medical
Association is providing physician credentialing and authentication
services and will validate the identity of health care providers. The
National Community Pharmacist Association and SureScripts are providing
authentication and access for independent and chain pharmacies. Tools
are in place to prevent unauthorized access and audit logs of who has
access to the system and what records are being accessed will be
rigorously maintained and reviewed. The information on KatrinaHealth.org
has been made available for more than 150 private and public
organizations electronic databases, from commercial pharmacies,
government health insurance programs such as MAID, private insurers, and
pharmacy benefit managers in the States affected by the storm. Key data
and resources were contributed by the American Medical Association Gold
Standard, the Markle Foundation, RxHub, and SureScripts. Data
contributors include Medicaid, perhaps of Louisiana, Mississippi; and
chain pharmacies, including Albertson\'s, CVS, K‑Mart, Rite‑Aid, Target,
Walgreens, Wal-Mart, and Winn-Dixie and Benefit Pharmacy Managers. I
share that information to simply say that as certainly as we as a Nation
started to deal with the severity of Hurricane Katrina and what we were
going to do with those displaced citizens who needed to get back to
health care and could not because they could not find health records,
the exercise of the marriage between the public and the private sector
to construct immediately some form of national database that could allow
us to rebuild these records and to supply information that both the
consumer had to have and the treating physicians and medical centers had
to have has illustrated to us that many of the barriers that we\'re
concerned about today they have addressed in that process.

I can share with you, from our position within our organization, we have
funding that we provide to Hurricane Katrina patients that have been
displaced and are trying to get back into care for their chronic and
debilitating and life‑threatening illnesses. And the systems that have
been outlined to us in this summary provided by Dana\'s group are
wonderfully developed systems, and they are working very well. And I
think they do go to some of the issues that were being cited around the
concern of barriers.

I think when we look at the registration summary that has been provided
for us here on page 3, that it bears reviewing with this group as a
whole, and then I want us to focus on some of the questions that are
characterized at the bottom of page 3 and page 4 and try to solicit as
much information as we can get from all the participants on the call
this afternoon. Similar to the operating rules that govern
interoperability and credit card transactions, CAQH is facilitating a
multistakeholder initiative to develop business rules that will govern
the exchange of information as it relates to eligibility and benefits.

With the roles, the industry will have a standard process and content
for eligibility and benefits and/or actions between health care
providers and payers, including response time exception processing and
error management. CMS is supporting the CAQH effort to develop
agreed-upon operating rules to guide the way eligibility and benefits
information is exchanged. Access to reliable eligibility and benefits
information at the point of care will reduce the amount of time
providers spend on administration by improving the accuracy of claims
submitted and providing enhanced information on patient financial
responsibility. The HIPAA transaction rule and standards provide a
foundation for the exchange of eligibility and benefits information, but
do not go far enough to promote the interoperability needed, which I
think we just addressed in the comments made by members of this call.
The data scope identified by HIPAA is limited, and elements needed by
providers are not mandated. Further, HIPAA neither standardizes data
definitions nor offers business requires, i.e., timely response. And it
seems that this is a perfect opportunity for the members of this working
group to look at that one statement and to give some clear idea of,
number one, these are some of the barriers; number two, how do we
overcome them? The rules will build upon the HIPAA 270, 271 transactions
for eligibility and benefits and address the following information:
number one, which health plan covers the patient; two, confirmation of
service types; three, confirmation of patient\'s co‑payment amount;
four, confirmation of the patient\'s co‑insurance levels; and five,
confirmation of patient\'s base deductible levels. And I think, Ross,
going back to the comments that you made earlier, these questions and
these rules build upon one fundamental group of pieces of information
that we know will have to be collected in the services and in the areas
that we\'re working on.

If we look at related Federal efforts and resources, although CMS and VA
and DOD and OPM have access to different types of health care
information. Each operates under different legislative authorities and
regulatory schemas. The DOD uses clinical data and counterdata claims
data from external providers and information on eligibility, whereas OPM
has only eligibility and benefit information available. CMS has both
eligibility, benefit data, and claims but no access to patient‑specific
clinical information. The VA, like other providers of care, has full
information sets on patients treated within its system, but not from
providers outside the VA. Currently the VA and the DOD have both
launched unique and noncoordinated personal health information tools,
with variable linkages to other services. CMS has a beneficiary portal
pilot project planned for nationwide roll out in 2006, which will
provide eligibility, benefit, and claims information but no linkage to
medication renewals, appointment scheduling e-mails, etc. At present,
each Federal agency has its own system of identifying patients or
beneficiaries. In the area of modeling the project, what are the minimum
data elements of a registration summary? And certainly that is a
question that we as a working group can deal with and get your input
this afternoon. What are the data sources for the data elements? What is
the scope of the medications listed, bearing in mind sensitive
information protected by specific State laws? Certain data sources for
medication lists, and what is the best approach to consumer controls and
management of data while maintaining data validity? Limit to specific
fields, lag fields that patients may have modified. So if we could,
let\'s begin this next segment of discussion around the subject of how
we want to model this project and try to get answers to questions one
through five from those of you on the working group call this afternoon.

\>\> Matt McCoy: Operator, please open Josh Lemieux\'s line.

\>\> Josh Lemieux: I was just -- I think that this list of questions
touches upon the last point that we were talking about, big barriers to
deal with. And I just wanted to add to the ones already mentioned:
clinicians and their involvement and how data that the patient would
access and manage would be reconciled with records that clinicians have
and fitting into their workflow so that the information is available at
points of care and pharmacies, where it\'s needed in order to help aid
decisionmaking. And just listing that as one of the barriers in addition
to consumer behavior, privacy business case for sharing data,
authentication, and management of patients\' identity. Just wanted to
add that.

\>\> Katherine: Thank you. That was a great summary about Katrina. Thank
you very much for overviewing that. And in addition to some of the
barriers that were already mentioned, obviously the NPI, some of the
autopopulation of the history, which kind of ties back into the patient
management of the history, I do think that it\'s important to ensure
that the different sources of data maintain their integrity somehow, and
that if the patient is updating their information, that it should be so
flagged. I do think that\'s also a big barrier in terms of really asking
these patients to become consumers of their health care and digest it.
And I think one of the biggest barriers we\'ll have mentioned on the
call is that the usage might be very low. So I would suggest something,
you know, in terms of if we\'re giving direction on how to proceed
forward with this, you know, a limited-type geography or limited
population set would be something of interest, I think. Yeah, I think
that\'s what I would say is what we need to think about. In terms of the
NPI, I would very much like to see some type of movement on the NPI.
This is the particular breakthrough area that will help push it. I know
the discussions have been going on for numerous years, and probably a
lot of us have been in the discussions. But for all intents and purposes
right now a lot of companies like us are using applications such as
master patient indexes in lieu of an NPI. You know, these systems
aren\'t cheap. It\'s probably not accessible from an individual point of
view but there\'s some type of centralized point where this indexing
could happen that may be one way to circumvent the NPI if it\'s not
going to happen soon. Thank you.

\>\> Divet: Hello, as I was listening to the conversation and we were
talking about security and privacy in earlier conversations, as you were
doing review of Katrina, what stuck out to me is we made a distinction
of categories of information that should be available online, which to
me, in some ways, defeats the purpose of selling the message that
people\'s information is secure. It\'s almost like we\'re saying that if
you have any medications related to mental health, that that needs to be
a whole different level of security, whereas I think I would hope that
the message that we would get across anyone is we\'re going to have a
continuity of health care information and all that information was
protected at a certain level.

\>\> Linda: Thank you, Divet.

\>\> Helen Burstin: I think one of the lessons we learned from the
Katrina Health experience was that, although technically it went well,
there was a lot of issues around physician willingness to actually use
that information. So I would caution us, while we\'re thinking about the
technological issues of making this a reality, I think on a parallel
track, it would be very helpful to think about some of the workflow
issues so providers would be willing to access it in the context of the
way they actually do their work.

\>\> Ross: Yes, related to that, clinician willingness to participate, I
think Katrina did highlight the need to build awareness. And this is not
just awareness on the clinician level but also on the consumer level. We
can build all this stuff, and it can actually work, and it can meet all
the needs that we\'ve been addressing. But if there\'s not some sort of
public relations, public information campaign associated with it, we\'ll
not get the penetration that will be needed. There will be some word of
mouth eventually, but we need to get awareness built once we\'ve got a
solution available. And then we\'ve had a lot of discussion around the
HIPAA issues of how to share this and the last comment was about are we
denying the benefit to people, for example, with mental health issues or
HIV and other, what we\'ve been considering higher-tier privacy issues
related to health information. And perhaps one way to look at addressing
all of these issues is if we allow the consumer to be the one directing
who can have access to it at any given point in time, not that they
necessarily have to be the ones technically carrying it around, but if
they are the ones physically giving permission to a clinician to say,
"My health information is kept at" -- be it their payer, be it
KatrinaHealth.org -- and they\'re aware of that, and they give the
release at that time, they can choose at that point what level of
information is provided, and I\'d have to, you know, look up on my HIPAA
rule book about this, but I think that you can -- if it\'s a
consumer‑directed ask, it may not require a specific business
relationship under HIPAA.

\>\> Linda: Thank you, Ross.

\>\> Kathleen Mahan: In terms of categorizing or separating out the
data, you know, categorizing it so that -- how should I put it? It
wasn\'t that we were trying to limit its usefulness in terms of the
amount of time, which was, like, 7 days, that we had to get the data
prepped and ready. Besides, all the HIPAA privacy concerns, etc., and
waivers that we had to obtain, there was concern in terms of those
categories of drugs and the releases that would be required from a State
level. Now, in terms of this particular plan and moving forward, we have
a little bit more time to plan accordingly. So I think, you know, we
probably want to have some type of patient discussions around patients
and how they would control the use of their data, which kind of brings
me to a possible barrier, but it\'s the notion of patients' preferred
consent, which gets down to the level of nitty‑gritty of "I want all my
providers to see my Zirtec, but I don\'t want them to see my HIV
cocktails." Is there the idea that this notion will be allowed, or is it
an all‑or‑nothing "opt in, opt out"? Because we do get down to that
conversation always: "What if this patient would like to share this
information but not...?" And if that is allowed, does that impose some
type of threat upon the clinician physician in terms of treatment? And
does that put them at risk? Thank you.

\>\> Linda: Thank you.

\>\> Divet: I\'d like to continue with the comment that was just made. I
guess whatever system would be built, it would be able to flag and give
the physician a heads-up that this patient has masked some of his
information. Because, you know, any drug that anyone has taken can
affect the treatment if the doc doesn\'t know their complete drug
history. And another issue, my original comment before that comment was
made was on the liability issue. Being a member of DOD, I feel like our
clinicians were probably, would probably be more acceptance to using
information coming from different sources, because they don\'t have
personal liability of the information that they use, whereas when we\'re
dealing with people this civilian organizations, they\'re bound by their
State liability rules, and if we have people crossing State, I think
that that would be one of our big issues in our issue box of making it
more level playing field as information crosses State lines.

\>\> Jody Daniel: Thank you. I just wanted to also note, when we\'re
talking about sensitive health information, that information that
certain States have more strict privacy protections on, and the approach
that was taken in Katrina Health to limit the access to certain types of
information for which there were more strict privacy protections. We
also have to be careful about discrimination and making sure that we\'re
not promoting practices that are discriminating against certain persons
based on a particular illness or a condition that they have. So that\'s
just something that should be factored in when discussions continue
around how to deal with the sensitive information and the State privacy
laws related to that information.

\>\> Matt McCoy: The queue is empty, Nancy.

\>\> Nancy: I would like to be mindful of the fact that we\'re moving to
about the midway point of our call, that one of the things we said early
on this afternoon is that anything that AHIC does develop or any
recommendation that this working group would carry forward to the AHIC
Community and subsequently be adopted by them will be pilot tested first
to targeted populations. I think at this point, we will be optimistic
that we will offer tools to the public that consumers will indeed
embrace. And I think, moving forward, that the staff, who is working
with us this afternoon, if you\'re in a position and would like to
comment about the pilot testing that is shown as one of the
fourth-quarter activities of the implementation plan, I would like to
suggest that the floor is now open so that we could have those comments.
Dana or Kelly?

\>\> Kelly: It would probably be helpful to clarify some of the
information that\'s been already communicated about the pilot. I think
essentially, the short‑term recommended actions that will be proposed to
the Community on March 7^th^ will largely be shaping the type of pilot
that could be supported by ONC and others, so that really our early
deliberations today and over the next few weeks are largely going to
sketch out what we think is feasible and really define what data and
what tools are we talking about in a pilot, and then also really
consider what target populations should be evaluated based on any
successful experience we know to date across the organizations or across
the country, and what target subpopulations are most in need or could
most benefit from the tools that we know to be out there or the data
that we know we can mobilize in a relatively quick fashion.

So I think really there\'s no way to predefine the pilots up front. But
I think if we more systematically look at the questions on page 4 and
the briefing document and really try to answer some of the tough
questions around the data sources that are available, what is the best
approach for consumer control, and then really get into, "Well who
should we be targeting in these pilots?" so we can all collectively
start to think through what our options are and then be able to make a
decision over the next several weeks on which is the best option to
recommend to the Community.

\>\> Nancy: Thank you so much. You can see that she has very artfully
moved us back to those questions that we introduced earlier this
afternoon. And I would like us to go back to those questions and see if
we could spend a bit of time trying to get some very concrete answers to
some of the questions that are posed under "Modeling the Project" on
page 4. And our goal in the next several minutes is going to be to move
through the questions under "Modeling the Project," "Defining the
Populations," and "Other" so that we can feel, at the summation -- the
end of this call, we have indeed tried to move through each of these
points of discussion.

So let\'s go to question number one: "What are the minimum data elements
of a registration summary?" We\'d like to put that question out and ask
for any comments that members of the working group may have.

\>\> Kathleen Mahan: For the purposes of minimum data elements, if you
think about a registration process, the first thing a registration
process probably wants to do is ensure that there\'s not a duplicate
already residing in the system, whatever the system is. I guess we
haven\'t defined that yet. So in terms of trying to find that, probably
there\'s five fields at a minimum that need to be addressed. That\'s
"Patient First Name," "Last Name," "Date of Birth," "Gender," and "Zip
Code." That will provide the minimum dataset to which a system can
provide algorithmic checks to make sure there\'s not a duplication
somewhere. In terms of the other information, there obviously is a lot
more information, but from the first thing that I can think of is "Find
me this person and make sure it\'s not already in the system." Thank
you.

\>\> Nancy: Thank you.

\>\> Matt McCoy: Queue is empty currently.

\>\> Nancy: I will take that as a sign that we don\'t have any other
comments around that question today. But certainly, when we start
advancing our ideas forward to the staff for the creation of the matrix,
if this is a question that\'s important to you, we would invite you to
forward that information.

The second question: "What are the data sources for these data
elements?"

\>\> Kelly: I don\'t know if anyone from RxHub is on the phone, but they
currently do have a system in place that identifies some of this. And if
there are any representatives from the health plans, they might be also
able to speak to the data sources or the data elements that are part of
the core initiative that you had already talked about.

\>\> Nancy: Absolutely. Maybe someone with the health plan
representatives this afternoon could take this question.

\>\> David McLean: As Kelly had raised the point, from RxHub, we have
built the access into data through the PBM and their payer customers. So
the ability to access individual members that are within those
databases, and again, as Kathleen from SureScripts identified, using the
technology in terms of five points of demography is the method that\'s
used. But in terms of the sources, it comes from those payer databases.
Now, MPI technologies can be applied, and not just from payer sources
but provider sources as well. But in terms of what exists to date, in
terms of development in the industry, at least coming from the payer
side, those kinds of technologies do exist. I know that the folks from
the health plan side -- and I don\'t know whether anybody is on the call
that participates with the CAQH initiative, the core project \-- but
they are also beginning to look at that. And I think that\'s an
important feature, particularly as we think about this to make sure that
we\'re getting enough broad representation from the payer industry and
different insurers in terms of what their needs are in looking for --
because they\'ve gone down this path before, the insurance industry.
There were initiatives that were started in years gone by. It didn\'t
necessarily work out. Times have changed, and I think they\'re more
prepared for that, and the folks at CAQH and core project are clearly
representing the ability to make those things happen much more
expeditiously.

\>\> Nancy: Thanks so much.

\>\> Justine: I concur with what was just said. And I would point out
too that several of our Blue plans are members of the CAQH and are
looking closely at what\'s happening in their initiative and where
they\'re headed. It may be useful for this workgroup or AHIC to hear a
presentation at what\'s happening there. But we\'re certainly looking at
what\'s happening there and are involved. In terms of the first two
questions, I know we\'ve spoken about some of the data domains and plans
already prepopulating information in PHRs, and we went through the call
earlier some of those areas, medication information, the actual
encounter with the clinician and benefit information, immunization, and
then there are the self‑populated by the consumer. But I think one thing
that would be useful -- and I know Nancy you mentioned this -- these
questions were sent out in advance of the call, but not too far in
advance, that we want to make sure that we have time to vet it with our
plans in the broader commercial plans and certainly submit detailed
comments to you all in the next couple of weeks to answer these
questions. But I think it\'s difficult to answer each of them
systematically without having a chance to go back and talk to some of
the broader payer representatives. So I hope we have the opportunity to
submit in writing and we intend to do that some more detailed comments
to you.

\>\> Nancy: Justine, such an appropriate remark. I concur with you
exactly it\'s difficult to get these documents on a Friday afternoon or
Monday morning and be well-informed with all of your information ready
to have on Monday afternoon. So I certainly agree with that observation,
and we look forward to receiving information after you\'ve had a chance
to vet it.

\>\> Steve Shihadeh: The only point I was going to add a few minutes
ago: we talked about what are the data sources, and I think there\'s a
potpourri of sources that I think we have to acknowledge as we put
together a recommendation. In other words, we come up with a recommended
dataset. We come up with, a set of types of systems that we ought to,
either in Rev 1 or Rev 3, tie into. I think it\'s a pretty
straightforward list, and we might even be able to get some of the other
work done already.

\>\> Nancy: Thank you, Steve.

\>\> Kathleen Mahan: I feel like I\'m monopolizing, but I\'ll echo
David\'s point. In terms of sources of data, RxHub is a very natural fit
for the payer information. SureScripts is a natural fit for some of the
pharmacy information. And I think in terms of other sources of data
elements we have to look at, the patient themselves can be a source of
data. But again, my caution would be: ensure that it's well-noted. And
then we also need to look at labs. So payers, pharmacies, patients,
labs, primary care providers, other providers, etc. So that\'s all I was
going to add. Thank you.

\>\> Matt McCoy: Nancy, the queue is empty.

\>\> Let\'s move to the next question here: "What is the scope of the
medications listed, bearing in mind sensitive information protected by
State‑specific law?" Anyone that would like to have an answer to that
question?

\>\> Robert Kolodner: I know one of the things that comes up. VA is
subject to certain regulations or certain laws that would have to be
changed. Where we\'re not allowed to release information outside of, we
could release it to the patient, but we have to be very careful when it
relates to sickle cell, HIV, and substance abuse. So the way that this
would be structured would have to be some way that we securely release
it just to the person and not to an intermediary; otherwise we might
violate that law, or, as I say, we\'d have to look for a waiver for the
law to make this happen.

\>\> Nancy: Thank you, Rob. It\'s one of those obstacles, it sounds
like.

\>\> Matt McCoy: We don\'t have anybody else in the queue right now.

\>\> Nancy: Let\'s go to the next question: "What are the data sources
for medication lists that members of this working group might like to
bring forward in the discussion this afternoon?"

\>\> Kathleen Mahan: I would just echo what I said previously. The same
list applies. It could be patient‑produced medication lists. It could be
medication information in terms of what was adjudicated from the payers,
and it could also be a current medication list from what\'s on file at
the pharmacy. So the only one I would probably pull out of here is maybe
labs. But otherwise, all other sources apply.

\>\> Nancy: Thank you, Kathleen.

\>\> Lorraine: I also just wanted to mention, and I don\'t know that
it\'s a barrier per se or a concern, is that a source for any of this
data actually could be a caregiver or family member. And I don\'t think
that that should be categorized as the same as the individual. Because
in some cases, someone else is going to be filling these things out or
providing the data or entering them into some system that\'s made
available, and we have to take that into account, because it has all
kinds of other implications.

\>\> Nancy: Thank you.

\>\> Ross Martin: This is addressing both three and four. We have, just
going back to this, what is protected by specific State law or other
regulations like Dr. Kolodner mentioned about the VA. I\'m not aware of
any law that would prohibit me individually from providing my doctor
with my medication history. So inasmuch as we can find a method so that
I can grant permission to some entity that I designate as the manager of
this information for me, that I can give that permission to, that can
perhaps be a way to work around a lot of these issues in a way that
still leaves the patient in central control, especially for, you know,
the sensitive therapeutic categories from HIV status, sickle cell
status, etc.

And I\'m glad somebody mentioned the caregiver and family member as a
data source, because this is really going to be -- I think, as someone
alluded to much earlier in the call, one of these populations that does
have a particular interest in being able to work with personal health
record information, are caregivers of the elderly. And we need to be
able to make sure that we have a mechanism for that.

\>\> Nancy: Ross, absolutely. Wonderful observation. Perhaps there\'s
something else that this workgroup would want to consider, and that is
the preauthorization process that\'s required by most institutions,
whether it\'s a clinic or a hospital setting, that would indeed allow
and have authorized a specific family member or caregiver to be able to
provide that type of information legally. And so we may want to look at
the preauthorization process in the United States today and how it is
being applied as in support of this question.

\>\> Ross: Brief comments about the sharing or the reconciling of this
information. One of the challenges we\'re going to come across as we
provide this information, as drawn from other sources, is understanding
which of it is redundant, which of it has already been mentioned, and
what\'s not contained yet. And we haven\'t really -- we haven\'t
discussed that issue yet. And I don\'t see it in the mix of what we\'ve
been talking about. So I\'d like to make sure that we do address that at
some level. How are we going to allow the patient to identify
redundancies or things that are omitted because of the different sources
of information?

\>\> Nancy: Ross, that may actually take -- for our IT callers on the
phone this afternoon from the IT companies, we probably need to address
that at two levels, doing all that we can not to have that redundancy at
the time of the initial captured data, but also having systems that are
being used that, when they do capture data, can deduce as they go
through the process.

\>\> Ross: The final comment was about the role of the provider in being
a source of both registering people for this service, even if the data
comes from other sources, and updating it as well. Especially in light
of people who may want to be able to avail themselves of these, of the
electronic clipboard, but may not be technically savvy enough to manage
it on their own. When they go to their health care provider and say
they\'ve moved or they\'ve got additional information updated about
themselves, the demographic information that they know before anybody
else does, they know they\'ve changed their name or they\'ve got a new
phone number or whatever it might be, and that may -- the first place
they interface with the health care system may be the provider, and
they\'ll want to be able to, with permission, share that information
with other designated sources.

\>\> Lynn Rosenthal: I wanted to add something when Ross was speaking
that came to mind. A lot of what we\'re talking -- we\'re assuming that
the scope of this is with the provider organization. Is it not, or have
we not considered the scope of some of this information like medical
lists and stuff may be shared with a pharmacist or other type of people
outside the typical provider realm as well?

\>\> Matt McCoy: The queue is empty, Nancy.

\>\> Nancy: With that, let\'s move to the final question under "Modeling
the Project": "What is the best approach to consumer control and
management of data while maintaining data validity? Limit to specific
fields. Flag fields that patient may have modified." And certainly, I
think this is a very important question to this particular group, since
we are the consumer empowerment working group. So the floor is open for
discussion around question five.

\>\> Josh Lemieux: Nancy, I want to congratulate you for really
identifying -- and ONC staff as well here -- really identifying how
quickly we come upon and confront all of these policy issues. They
really are an important crux of what has to be addressed in order to
have a real breakthrough here. The five questions here in modeling the
project are, in a lot of cases -- if you look at them, you have to look
at them both from a network and from an application level. If we have
disparate sources of information contributing to an application then
they have to be networked together. And this last question really gets
down to the issue of, "In the patient-clinician relationship, what\'s
the source of truth here?" And today the source of truth is really the
clipboard and whatever the doctor might have jotted down and perhaps
some information that might have been shared. It\'s probably naive to
think, at least in my view, that anything that we build as part of NHIN
or through any applications is going to solve every possible issue in
determining the source of truth, and the reality is that the source of
truth is going to be still disparate. And what we\'re trying to do here
with consumer empowerment is to create some tools to kind of kick-start
the process, prepopulate some data, get some patients involved. And so
I\'d suggest, on the answer to this very last question, "What\'s the
best approach consumer control and management of data?", I think it\'s
really hard to know the absolute best approach before there\'s a
widespread use of PHRs, and that they\'re actually integrated into care.
Certainly there\'s a difference if the clinician is using an EHR, an
electronic health record, that has a personal health record extended
from it and integrated into some type of enterprise software. In that
case, the best approach may be quite a bit more straightforward, because
the rule of the clinician\'s tool is also the rule of the patient\'s
tool. And they\'re integrated. But part of our charge is having the
personal health record ultimately be portable. And so it\'s not
necessarily going to be always integrated with the EHR. And so what I\'m
trying to get at here, probably too slowly, is that I think it\'s very
difficult for us to determine at the application level the best approach
to consumer control and management of information, other than to demand
transparency of the data contributions in any applications, so that
it\'s very clear in the application who contributed what data, when, and
who amended that data or appended comments to that data and when. So
what we\'re talking about here essentially are audit trails and source
disclosure, date disclosure, time date stamping, everything, and that
can be -- it\'s really an application decision, but everybody who is
involved in sharing data needs to have some ideas of some common rules
across these different applications and users of those applications.

\>\> Ross Martin: Josh really covered a lot what I wanted to say about
audit trails. And ultimately, what we don\'t want to try to do is solve,
I think, going back to one of the very early comments about a "good
enough" solution. Also, we can\'t completely solve the many challenges
related to the veracity of health information. And we all know -- any
clinicians on the phone know that patients -- any patients on the phone
also know that patients lie to doctors all the time. And that\'s really
not going to change. Sometimes out of intentional trying to avoid the
embarrassment of a clinician knowing something, not bothering because
it\'s not pertinent to the issue and they know that, and also
forgetfulness. Many, many reasons. But we don\'t want to try to
completely fix that. It\'s not possible to fix it. What we do want to be
able to say is the information that\'s been delivered has either the
audit trail thing -- that if it\'s there, we know where it came from; if
it\'s been changed, we know that it\'s been changed ­­-- and ultimately
allow the clinician to determine that that\'s sufficient information at
this time in order to treat the patient and let the patient assert that
this information accurately reflects what they\'re sharing with the
doctor.

\>\> Sue: Hi, thank you. Building on what Ross was just saying, I do
think, in dealing with this question -- and I think it\'s probably the
most troublesome question that will confront the building of these
systems -- is how to provide consumer control while maintaining data
integrity. It is an issue that the NCVHS is wrestling with in terms of
their comments and recommendations to the Secretary on NHIN
infrastructure. And their first attempt at recommendations to the full
committee will probably occur in February. But one thing that might ease
the issue a little bit for the workgroup is to try to separate this
decision in terms of the personal health record versus the electronic
health record, and that a lot of the tough decisions about how much
control the consumer should have over the content of the medical records
and how that affects clinical care is going to be much harder to grapple
with than what information and how much control the consumers should get
out of a tool that\'s essentially their window into their medical
history. And something that they can share with other providers as
entree and a convenience to replace repeating common data intake issues
at every encounter. So while I do think it does need to be carefully
looked at and balanced and it\'s going to be not an easy question to
answer, I think keeping in mind we\'re only talking about the personal
health record here and not the electronic health record should help.

\>\> Nancy: Thank you, Sue.

\>\> Robert Kolodner: I think a couple of things for this particular
question. First of all, I think that unless we have the consumer have
whole control of their information, then this personal health record
isn\'t going to be adopted and trusted by the individuals so they can
allow all of their information to be available to them. The fact that it
is available to them does not, I think, mean that they have to release
all of it to everybody else.

As Ross and others have mentioned, patients hold back information and/or
lie. But often it\'s more holding back information from their providers
here and there. And having an electronic shouldn\'t take that right away
from them. Ideally -- we\'ve been wrestling with this in VA a little
bit, and ideally, the person can either release or not release something
rather than alter it and release it. But that\'s down the line. And to
go back to the -- you know, "Let\'s get started; have it be good enough"
and reinforcing those sentiments, for the registration data, we fill it
out ourselves or the consumer fills it out themselves on that clipboard.
So that one shouldn\'t be an issue. For the medication lists, the
question is whether, when we say that they would modify it, I\'m more
interested in them adding to it if they want. But they may decide not to
release something. I think within that particular field, the
modification is less of an issue than it is as we get into other parts
of the record. And at some point, we\'ll want to have technology that
essentially says this hasn\'t been altered or this has been altered. But
for purposes of this 1-year scope, especially for the registration part,
which is our charge, I think that\'s already coming from the consumer,
and so knowing that we want to get into these things in the future, I
don\'t think it\'s going to stop us to achieve the 1-year objective.

\>\> Anders Gilberg: We talked about some of the work that the Markle
Foundation had done on collecting an inventory of PHRs. I just went on
the Web site during the call. I saw they also had done a report from
their personal health working group, in which they did engage in some
kind of focus groups. And I guess with regard to this notion of consumer
control, I just thought it was really interesting, and we should perhaps
look to this document. Again, consumers want to have complete control,
give explicit permission to use information. And it was just interesting
in this study, with regard to PHRs, personal health records, that
consumers were most comfortable with primary doctor, 96 percent;
specialist, 95 percent; emergency room, 93 percent; hospital, 91 percent
-- receiving, you know, these type of data -- but less comfortable with
the idea of family members, 69 percent; health insurance companies, 65
percent, having access. And again, it was also interesting in some of
these focus groups, and again, looking at what -- in terms of consumer
control, where they\'d want sort of this information posted -- I don\'t
know how we fit it into this discussion, but where this information
would lie. They said that 58 percent stated that it was the doctor\'s
office was the most desirable host, followed by insurance plans, 15
percent. And then the next-most desired host would be the government at
12 percent. So it\'s some interesting kind of at least anecdotal
information about what sort of what consumers might like in this regard.

\>\> Matt McCoy: The queue is empty, Nancy.

\>\> Nancy: Thank you all for your comments around modeling the project,
and I think we now have the opportunity to go on to the issue of
defining the populations, and I\'ve struggled in listening to much of
the discussion around modeling the project with, "Should I say this or
not?" And Anders, I think what I\'d like to do is follow up with a
comment to the comments that you made.

As a family who this year did go through the rigors of battling a
life-threatening illness, for many of us in the world of health care
delivery, the issues that we\'re talking about this afternoon are
academic. They involve legal issues, or they involve business modelings
and business responsibilities.

When we start talking about consumers and electronic medical records,
personal health records, electronic registration, I think that we just
can be reminded, perhaps, that for the consumer, these very tools can
become life and death tools and can become the process made available to
them to more effectively and efficiently integrate into the appropriate
system of health care that will afford the greatest opportunity for the
reversal of life‑threatening disease or the maintenance of chronic
disease so it does not indeed terminate their lives in a premature way.
It\'s a weighty discussion we\'re having this afternoon, not only from
point of view of our family but millions of other families that are
dealing with these questions.

With that I\'d like to go to defining the populations in terms of what
is the best way to address the uninsured, the underserved, and safety
net providers. Should we consider State‑based or regional options? And
in trying to switch gears here, I think it\'s an opportunity to be
reminded that we have over 44 million uninsured Americans today. And
certainly we have a very large number of underserved Americans. And we
have a lot of providers who are those safety net providers. I\'d like to
hear the working group members comment on State‑based or regional
options and what your thoughts are around this question.

\>\> Divet: I\'m giving it from the perspective of DOD. I think we have
two distinct populations. We have the service member population, where
the majority of State laws or regional laws don\'t apply because
they\'re in the armed services, and we have what I call the service
members\' families, where, depending on the issue and where the
individual is treated, whether they\'re treated in a government facility
or they\'re treated in a facility that\'s not government, State and
regional laws would apply. So there\'s a multidimensional issue in DOD
dealing with the population as far as insurance and laws.

\>\> Thank you.

\>\> Matt McCoy: We don\'t have any other names in the queue right now.

\>\> Nancy: I\'m going to hypothesize on behalf of the working group
that perhaps that is a question that we\'ll get more written comment to
once you\'ve had an opportunity to vet that with colleagues within your
own organizations.

\>\> Kelly: I might be able to add a little bit more information as
people think through potential responses to this, if it would be
helpful.

\>\> Nancy: Thank you.

\>\> Kelly: I think, as everyone knows, there are hundreds at this point
of regional health information organizations that have been forming
across the country. And we know of at least 12 markets that will be
impacted by the prototypes of the Nationwide Health Information Network
over the next year. (Inaudible) they\'re funding five State-level
regional health information organizations, and a lot of this activity
could be looked at as perhaps a point of leveraging. You know, if they
had interest in partnering with the folks involved with this effort in
considering how they might deploy information in a registration summary
or medication list in their own geographic areas. That would be a
consideration that might help us to define scope. And you know we also
could be getting more input from HRSA and others that are involved with
community health centers to get their perspectives on how best to reach
the uninsured, underserved, or the safety net providers. So we can
provide more background information to the group as necessary, if that
would help some thinking and input.

\>\> Nancy: Thank you, Kelly. I think we should probably open the floor
to your invitation to see if there are those on the floor that would
like to comment if you would like further information or clarity around
this question.

\>\> Anders: Well, we were asked, Kelly, and I agree with her. I think
it\'s very critical to get to this population, but how difficult it will
be. Maybe perhaps through the State Medicaid programs. But if we\'re
looking at the issue of self‑populating this information into some type
of personal health record, I mean, this is -- of all the groups, this
would be the one that it\'s going to be difficult, perhaps, if they\'re
less educated or less health literate, to do this themselves. There
could be barriers to language. There could be a whole host of issues.
And again, from the AMA\'s perspective, with a lot of this and other
programs', you know, unintended consequences I just want to highlight,
and these are really critical issues.

\>\> Helen Burstin: I wanted to comment on Kelly\'s comment. I think
that\'s a great idea, and we\'ve actually been working, we now have six
States and probably 10 regional efforts that don\'t cross an entire
State. And one of the things we would be interested in is thinking about
how to bring more of the consumer voice to those information exchange
efforts as they get off the ground. So I think it might be a very nice
testing ground. Since they\'re 5‑year contracts, they all have at least
3 years to go. So it would certainly be within the right time frame.
AHRQ supports each of them for a million dollars a year, so they\'re
pretty well-funded as well.

\>\> Matt McCoy: The queue is empty.

\>\> Nancy: Thank you so much. There is a second question in defining
the populations that deals more with the providers. Given the provider
workflows are consistent across all patients, are there specific patient
populations that should be encouraged to utilize this project and how?
The floor is open.

\>\> Steve: Just to share some of our thinking at Microsoft, we\'re
segmenting the population into three categories. The prime market would
be those folks who are chronically ill, and we\'ve talked about that.
And the second market would be those who are concerned. They either have
an elderly parent or a younger child or perhaps a spouse that\'s ill.
And then a third category which we think is low priority, the healthy.
It\'s kind of maybe a little bit of a morbid way to look at it. But it
does mirror where there\'s interest in tools like this.

\>\> Matt McCoy: No more comments in the queue.

\>\> Nancy: Thank you very much. Certainly, again, as you deal with that
question with your own constituency, please share additional insights
you might have. There are four global questions that have been shaped
for us on the bottom of page 4 that I am hopeful again that we can
provide some comment to this afternoon as we begin to wrap up this
discussion. Number one, "How should we limit liability risk as we
consider as a country and the recommendations that we\'re going to be
making to the Community, trying to secure electronic registration
summaries and medication histories?"

\>\> Matt McCoy: Doesn\'t look like we have anyone queuing up for this
one, Nancy.

\>\> Nancy: Let me make a few comments around this, and those on the
call can consider and maybe even talk about some of your legal
representation within your own organizations. But as we consider the
issue of liability risk, it may be beneficial to go back to that earlier
discussion about what is the role of preauthorization, what is the role
of authorization by the patient to have a designated person representing
them and making decisions and providing information that would go on
these forms. What are State laws currently that may indeed regulate or
to some extent create a barrier that may need to be considered as we
look at what the liability risks are for those of us that are trying to
collect this kind of information and in turn use it on behalf of the
consumer. So we\'ll look forward to your thoughts on that when we
receive information back around the matrix. And we may actually choose
to resubmit that question to you along with others that we did not get
answers to this afternoon.

There\'s a second global question here, what will encourage providers to
adopt usage of this information into their workflow? And I certainly
don\'t want to be calling out any particular member on this call and
certainly would not do that, but we do have a few representatives of the
medical community, and I would certainly like to open the floor for them
to provide some of the answers to this, as well as others of you who may
be on the call who work with the provider community routinely in the
work that you do. So how do we get these providers to adopt the use of
this information into their workflow?

\>\> Matt McCoy: I\'d like to take a second to remind the members of the
workgroup: if you want to queue up, press star 1 on your telephone.

\>\> Anders: Just a couple of things off the top of my head. Certainly
the ease of access to which physicians who in some cases wouldn\'t have
an electronic health record, you know how they would access this
material, would they have to have staff go on the Internet? Again it
goes back to this issue of where, short of an electronic health record,
where would this issue reside? Would it be something that the patient
would carry with them or whatnot. Again, also, I think you have to have
confidence from the physician point of view, any accuracy of the data.
And they would have to be sure that this was accurate or they would
probably just go through and verify it all themselves anyway to limit
their liability risks like we discussed in the prior question.

\>\> Helen: Just to (inaudible) to adopt health IT, but certainly to
Anders's point about knowing that if it\'s something easy that they view
as being both important to health and improve quality and safety as well
as time efficient. They\'re necessarily quite willing to use it as you
can see by the evidence of the quick acquisition of PDAs and Hippocrates
among physicians, something that saves them time for those willing to
use it. The point I want to make is these are testable questions. And
while we\'re trying to build this I think it\'s important to actually do
some very applied research, sitting with providers, and I don\'t think
it should just be physician-centric since I think must of the time this
will be accessed by nurses and other health care personnel as well to
begin to understand how would the information best be utilized in a way
they\'d most likely be to use it. We\'ll be delighted with again 122
grantees across the United States. I think we\'ve got lots of
communities we could actually do some of this work and would be
delighted to work with the workgroup to actually do something that
allows us to in fact assess some of these questions directly from
providers.

\>\> Lorraine: I just wanted to support everything that Helen was
saying, oftentimes on the HIPAA side of the world we say the provider
needs to be involved. In fact, it\'s not the provider; it\'s really the
provider\'s office staff in the various capacities that they serve. I
think we\'d probably do ourselves and this project a disservice by not
making formal statements about including them in some of this research
and in some of the development work.

\>\> Matt McCoy: The queue is empty.

\>\> Nancy: I\'d like to make a followup comment to Lorraine and
Helen\'s comments. Certainly, as we think about office staff, we can
think within the parameters both of the clinical office staff as well as
the administrative and financial office staff. And perhaps as we do
memorialize that into any research process, we will want to include
staff members from both of those categories.

There is yet another question we have an opportunity to comment on,
question number three: "How do we encourage the market to participate
and/or develop?" Of course, to me, this is a question that you may have
immediate answers this afternoon, and we want to hear those. For those
of you who are going to take a bit of time to vet this with others, we
do expect this would be a question that we would come back to you more
than one time with. The floor is open.

As we move to final question, "How do we address State‑specific privacy
and security issues?", I would like to hear a comment from those on the
phone that may have information they think be relevant here.

\>\> Robert Kolodner: For security, obviously the States may have
different requirements. For privacy, when it\'s releasing the
information to the individual, I\'d be interested if anybody has looked
to see how State laws might affect that particular communication.
Hopefully, that\'s not where the privacy laws tend to focus, which is
information about an individual and who can release it to other people
other than the individual.

\>\> Matt McCoy: Nobody else in the queue presently.

\>\> Nancy: Good. I would like to ask the working group and Linda, if
this might be a wonderful opportunity for us to have two separate
working groups that would be willing to work maybe over the course of
the next week to ten days, looking at both question number three and
question number four. I suspect we have organizations represented on the
call this afternoon that do have departments that could take these
questions and do a bit of research and come back to the larger working
group call later in February, with wonderful answers to questions three
and four. So Linda, do you think we might want to move forward with
having a working group in these two questions?

\>\> Linda: Are we able to do that from a FACA standpoint?

\>\> Can we do that as long as we invite the public and you put the
notice out?

\>\> Dana: I think it might be most efficient if you all decide you want
to work offline and do your own research among who you identify to be
the most engaged or have the most expertise in this area and then just
come back and report back to the workgroup. I think it\'s FACA-compliant
to do our own finding and research, and as long as we can present what
you think to be the best options or the best answers to these questions
in a public forum, then we\'ll be covered.

The only reason I suggest that, as opposed to doing a public meeting:
there\'s a lot of logistics right now. It\'s across four workgroups over
the next 5 weeks.

\>\> Nancy: Absolutely. And I guess I would like to go back to the
question that we started this discussion and ask those on the call this
afternoon if you would like to work with us in a working group situation
to get answers to questions three and/or to question four. If you can,
let us have your names by forwarding that information directly to Dana
or directly to Linda Springer or to me, and we will then be happy to set
up a call to have another conversation with you.

And I would like to thank each of you that came forward this afternoon
with your suggestions and that shared your insights to many of these
questions. I do want to go back and also share the comment that was made
earlier that perhaps you needed a bit more time to review the materials
that had been sent out and to forward some of your comments to some of
these questions in a written format. Again, we would appreciate that
communication also. And Linda, with that, I would like to turn the
agenda back over to you.

\>\> Linda: Thank you. I guess there was one other item on here about
public input. And I don\'t know if there\'s, for this particular
meeting, if we have a way to include that here, or was our topic there
to just make sure that we\'re communicating in an open way so --

\>\> Matt McCoy: I can jump in and answer that question. For those
members of the public right now who following along streaming the audio
and video on your computer, we\'re going to get a slide up on the video
portion of that interface shortly that will have a phone number and a
confirmation code to call in and make your public comments. I will ask
Dana or Kelly if anybody live at the Humphrey Building wants to make a
comment before we wait for the public to queue up over the phone.

\>\> Kelly: No, we have no public comments to offer here in person.

\>\> Matt McCoy: Okay. Then Linda and Nancy, I think it might take just
a couple minutes for members of the public who are interested to call
in.

\>\> Linda: If I could just double back for just a minute and make sure
on our earlier segment about the inventory and the other, the four
lists, you would want us to -- I want to review the procedures you would
like us to follow.

\>\> Kelly: That would be great. Do you want me to walk through what
would be a logical sequence?

\>\> Please.

\>\> Kelly: From what I heard earlier, the four sets of documents that
we should be working on \-- which you know ONC will facilitate getting
together -- the first is the overarching or guiding principles for the
workgroup to follow. And I think that we highlighted during the
discussion some relevant documents: those from Markle and, I think the
NCVHS letter was mentioned, the recommendations to the Secretary, and
perhaps some other sources to really act as a baseline for us to
consider. But we\'ll be putting together what we know is already out
there and sharing that with the group so that there can be some level of
consideration and consensus around that to start off with. And then
secondly, establishing the criteria. And from what I understood, I think
this evolved in our conversation, but that it would help us evaluate the
tools that are currently out there, and perhaps with a particular focus
on requirements that are relevant to both a registration summary and
medication history. So I think we\'ll need to look to see again from the
existing sources of information that have already considered this, is
there a starting point for us here, or are we going to have to just
continue to give some input across the group to really start to
formulate these potential criteria? So we\'ll initially, in ONC, do some
homework on this, see what we can provide the group and then get,
incorporate any input we get as we put together a draft document. And
then for inventorying approaches, we know that there\'s those CMS
inventory and Markle inventory. Some other organizations probably have
some information to share with that. Again, I think we want to be
relatively focused on the specific breakthrough on registration summary
and medication history and really look across what we know to be going
on right now in the marketplace, some common elements that are relevant
to both of those pieces. So we, again, can take what both CMS, Markle,
and others provide us over the next several days and try to put that
together in draft form and then figure out a process to perhaps expand
that to make sure that we\'re not limiting any important information or
excluding any important information. You know, one way I think was
mentioned by one member is to send this out on our listserv. So if that
seems like a good way to sort of validate or expand the potential list,
we could do that. And then the -- I\'m trying to think the fourth item I
had....

\>\> Would be the issues list?

\>\> Kelly: Right. And I think actually our conversation on barriers and
policy issues \-- and again, in answering some of the global questions
that Nancy just posed \-- is a good start at that. We can recap on that
today to come up with our starter list and flesh that out as the two
sets of people that want to be delving into the last question is number
three and four as we tackled -- as they start to better define or get
answers for those questions, we can add more specificity on to that. And
I think also internally, as a policy council is formed across agencies,
we\'re going to be getting some information that will help flesh out
some of these issues. And as that, as the agency input becomes
available, we can add to that.

I would say that the early drafts of these documents, the onus would be
on ONC to get some work started and getting a lot of this done. But
we\'ll more carefully define and refine a process for getting workgroup
members\' input and other outside experts as you see necessary.

\>\> Matt McCoy: We have people in the public comment queue. Would you
please open Richard Shilling\'s line.

\>\> Can you hear me? This is Richard Shilling in Seattle, Washington.
I\'ve been following the conversations with great interest. I would like
to thank you all for having this and keeping it transparent. It\'s
incredibly important, because as you\'ve found out and continue to find
out, there\'s an incredible amount of work gone on already to answer the
questions you need. For those sitting on the sidelines watching
silently, we have things we can help to send you out on that and will be
forthcoming with that. There were two things I wanted to get back to.
One was about the master patient indexing, and that\'s very relevant.
I\'ve done a lot of work with master patient indexing and in health care
in general. And the interoperability issues in master patient indexing
will continue to be a problem. There\'s been some work that\'s gone on
at a State level to help address some of that. But I\'ll be forthcoming
with some information to the committee about some of that other work
that\'s gone on with that in the government, in the government‑funded
research labs.

The other thing I wanted to broach was, I notice that no one answered
the question about getting the market to participate. And I wanted to
open that question up a little bit. In the consulting work that I\'ve
done, the key to opening up market participation is in a way that is
beneficial to provider and the patient really seems to be around, first
and foremost, getting the technology in the hands of those people as
cost‑effectively as possible. When we talked about distribution of IT
and the technologies necessary, costs to acquire those technologies are
actually barriers to entry. There are patients -- it\'s well-documented
in the health care community that there are patients who do not seek
medical care in the first place because they\'re underserved and they
don\'t have access to health care or insurance. It doesn\'t necessarily
follow that those patients would be likely to reach out to the
technologies to take advantage of the programs that you\'re building.
That\'s all the comments I have. Thank you very much.

\>\> Matt McCoy: Operator, can you please open Adrian Groper\'s line?

\>\> Adrian Groper: Hi. I\'m interested in clarity on the materials that
are associated with this process and how a smaller player like Medcom
(inaudible) can provide written comments or input as we go along. I\'m
late maybe to this party, but it hasn\'t been clear so far.

\>\> Kelly: If you\'re interested in providing written comments or
written testimony, this workgroup is actually considered to be a FACA
subcommittee. So we\'d welcome your comments in writing, and you can
forward those to the Co‑chairs and me at your convenience.

\>\> What about the materials that were referenced today?

\>\> Kelly: We\'re going to put those materials up on the Web. In fact,
many of them are already up on the Web site now, and that Web site
address is www.hhs.gov/healthit. You should be able to review all the
documents now. There were some reports cited like the Markle report and
things of that nature; we don\'t have those to post yet. But any report
that was cited today we will try to get up on the site this week.

\>\> Matt McCoy: That\'s all the public comments we have now. I don\'t
know if you want to hold on a few minutes. I\'ll defer to you on that.

\>\> Nancy: While we\'re waiting for those public comments, I would like
to go back to comments that Kelly was making and summarizing some of the
work that would be done as a followup to this meeting, if I may.

Certainly, in this call, it was cited that Markle Foundation had
developed consumer principles around the issue of health information
technology. And we would encourage that those principles be reviewed and
considered as we\'re developing the documents that will be forthcoming
to the working group. I\'d also like to go back to comments that were
made by Sue McAndrew and Rob Kolodner and Anders Gilberg earlier in this
conversation this afternoon about the role of trying to address how does
the consumer control the ultimate tools that are going to be developed
and that they are going to be using moving forward. And certainly those
are areas that we will want to give careful consideration to as the
consumer empowerment group tries to marry both the world of information
technology with the need of a consumer that is ultimately going to be
using these tools, at the same time addressing the question of how do we
positively incentivize utilization of these tools and programs by the
providers in the United States.

Any other public comments at this point, Matt?

\>\> Matt McCoy: No other comments.

\>\> Linda: I want to thank everyone, especially all the participants
and also Matt and Kelly and everyone else who has helped us to make this
possible, but particularly the participants for being so forthcoming and
enthusiastic. I think we\'re off to a good start and just hope that we
can continue that level of involvement.

\>\> Nancy: I would like to say thank to all of the folks that were on
this call, and for those of you in the working group, we have exchanged
e‑mail addresses so that we can communicate with each other, and I think
I speak on behalf of Linda and myself that we invite you to communicate
your ideas moving forward and share your questions and observations so
that we can try to have for you a very beneficial and worthwhile working
group experience.

\>\> Dana: Thank you, everybody, for your participation. Now, the next
meeting will take place on February 21^st^, and we do remind you that
you can come to the HHS building and come in person. We do have quite a
few people here. And as you can see, we do have the technology. And we
know that a lot of folks on this working group are already in the DC
area, and we\'re always happy to see your smiling faces. In addition,
the minutes of this meeting will be available in 5 days, and we\'ll have
them up on the Web site for you to review. Any other questions or
comments?

\>\> Nancy: I -- perhaps we would want to give a mailing address, since
we were asked the question how could folks get written comments in to
you. I think that was one of the questions asked by the public.

\>\> Dana: Our mailing address is 200 Independence Avenue, Southwest,
Washington, DC 20201. We get by with a little help from our friends.

\>\> Is there a mailbox, Dana?

\>\> Kelly: Can I jump in? I don\'t know what delay there is in getting
wired mail, but I\'m just wondering if the fax might be better. I know
that mail comes to our building, it\'s irradiated, and there\'s a delay
before we actually get it. I don\'t know if there\'s a fax number, Dana,
for HHS.

\>\> Dana: What we can do -- because the fax number that we have is
202‑690‑6079 -- we\'ll go load it up with paper now. I\'ll let you close
out the meeting.

\>\> Linda: I think we\'re done from this end. And we\'ll close out the
meeting and look forward to the next meeting.

\>\> Dana, thank you too, and Kelly, and we look forward to speaking
with you again on February the 21^st^.

\>\> Dana: Thank you.

\>\> Operator: This will conclude today\'s conference. Thank you all
again for your participation, and wish you a great day. 407.