American Health Information Community

Consumer Empowerment Workgroup Meeting

October 12, 2006

**Disclaimer**

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

**[\>\> Rose Marie Robertson:]{.underline}**

I\'m Rose Marie Robertson, Co-chair of the AHIC Consumer Empowerment
Workgroup, and here with me as Co-chair today is Gail McGrath. We\'re
going to spend much of our time today on a visioning process that we
think will help us put our hands and minds around this issue. And our
time before the lunch break and initially after the lunch break will be
devoted to that.

So we\'ll kick off first just going around the table so that we can
introduce everybody so those on phone will know who is here in the room.

Should we start down at that end?

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

Christina Collins with the AMA.

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

Michelle Murray with ONC.

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

Ross Martin with Pfizer.

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

Larry Bartlett, Health Systems Research.

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

Sue McAndrew, Office of Civil Rights.

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

Kim Nazi representing Dr. Kolodner for the Veterans Health
Administration.

**[\>\> Rose Marie Robertson:]{.underline}**

Rose Marie Robertson.

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

And Gail McGrath with National Patient Advocate Foundation.

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

Rob Tennant with MGMA.

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

I\'m Beth, I'm the writer.

**[\>\>Rose Marie Robertson:]{.underline}**

We have a writer at the end.

All right, very good. On the phone \--

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

Justine Handelman with Blue Cross and Blue Shield.

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

Eliza Moody from Microsoft.

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

On the phone we have Davette Murray from DoD, Lorraine Doo from CMS,
Kathleen Mahan who is here representing SureScripts on behalf of Kevin
Hutchinson, Anne Easton from the Office of Personnel Management and J.P.
Little from RxHub. Is there anybody else who we haven't heard from?

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

Paul Tang just joined.

**[\>\> Rose Marie Robertson:]{.underline}**

Good. Just exactly in time.

First, I\'d like to draw attention to the minutes of our meeting. You
have those from the September 18 meeting. Do I hear any corrections to
the minutes? Can I have a motion for their approval?

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

Sure.

**[\>\> Rose Marie Robertson:]{.underline}**

So moved. And second?

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

Second.

**[\>\> Rose Marie Robertson:]{.underline}**

All in favor?

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

Aye.

**[\>\> Rose Marie Robertson:]{.underline}**

Any opposed? Okay, minutes are approved. Paul, perfect timing. We\'re
going to have, in the beginning here before we go to lunch, we\'ll \--
Paul will set the context for us. Ross will give us an initial view of
the end state, and then we\'ll talk about development of that vision.

To help us with that we have Larry Bartlett here and he\'s going to act
as our facilitator so that we can all just put our heads to the effort
here.

So Larry, do you want to \--

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

I think that if we are \-- we shall assume that everybody has had a
chance to look at the draft vision, and I think I would just point out
that the sequence of discussion, I just want to put this in people\'s
heads, would be to sort of start with a discussion and see if we\'re all
comfortable with the end state, then, if you will, come back and look at
what is here and see what to add from the current state. And then
actually \-- and Rose Marie and I talked a little bit. I think the hope
would be or the goal, to make sure by the time we break for lunch,
we\'ve really gotten through those important pieces. Because the
tendency sometimes when you\'re doing this vision in segments, the first
topic basically eats up all the time and then you have to walk away. And
my understanding is that the objective, your goal of your activities
here, with perhaps some wordsmithing, give feedback into, I think Paul
and Ross have really sort of done a lot of heavy lifting on putting this
draft together. You\'ve got something that\'s going to be ready to go to
the AHIC at its meeting on the 31st.

So if we can, I would as soon get through those two segments before we
break for lunch and look at the middle area. Make sure we have time to
talk about the mid-state and look at the enablers and have a clear sense
and public effort.

**[\>\> Rose Marie Robertson:]{.underline}**

Paul, do you want to kick us off, setting the context for this?

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

Sure. So without any \-- without being judgmental, if people have not
read through the scenario, then I\'m happy to summarize. And if they
have, then we can sort of move forward.

**[\>\> Rose Marie Robertson:]{.underline}**

Not having everybody in the room, it\'s hard to say. Why don\'t you
summarize.

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

Okay. So this is out of some work that the Markle Foundation Connecting
for Health group did, working on PHRs back in 2003. And as part of the
motivation for their work, and a way to guide some of the principles
that they eventually developed, they came up with a set of scenarios.
And one of the ones that we thought was a useful starting point was also
a good graphic, is the one that starts about Paul, no relation, page 36,
with and without PHR. In the without PHR, it talks about Paul being
diagnosed with Type II diabetes and he has a number of providers which
include not only physician specialists but also a dietitian, a diabetes
educator who are all unknown to each other. So they do not practice in
the same group and certainly don\'t share the same record system.

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

Paul, if I could slide in for just a minute. This is Larry Bartlett and
I have chief dog blood in me but often \-- I want to make sure that
everybody in the room and on the call knows that what you\'re referring
to is the Markle Workgroup. And you\'re talking about a Markle Workgroup
report and \--

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

Page 36.

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

I wanted to orient people.

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

I\'ll just wait. Is everybody there? Yeah, it had been sent out in
advance.

Okay. So Paul, then, meets with the very folks that provide \-- or are
on his care team, at least on the professional side. And is \-- as
usual, he is asked to go fetch all the other records. So he goes and
does that. Takes a long time, may be expensive, and then tries to bring
this to everybody\'s attention.

He has to also act as the sort of the communicator, go-between, amongst
his various providers, even though when they talk to each other, he\'s
sort of left out of the loop.

Everything\'s done by face to face visit encounters, and most of the
things are actually either sort of in the moment of crisis or when
there\'s some acute situation, or talking about past things, sort of a
retrospective perspective.

Okay, so now then they to on to describe what his world might be like if
they had an interconnected personal health record. And so it starts out
again with him having a new diagnosis, and people are also then pointing
him in the direction of what they endorse as good information for a new
diabetic to learn about his disease, and manage \-- and treatment and
self-management.

They begin him on a shared access PHR, so the concept of a PHR where
people can provide further information for him to learn things about the
disease and his treatment, and about himself through shared access to
his lab test results and reports that come out of the various care
providers, is dumped into this PHR.

**[\>\> Rose Marie Robertson:]{.underline}**

Gail has a question.

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

Before we go any further, I just want you to help us all understand what
this shared access PHR is, who has created it, where is it practically
speaking. Help us out, because I\'m having a hard time understanding.
Obviously, it didn\'t just appear out of thin air.

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

Correct.

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

Something that all of these doctors had, or \--

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

Correct. Okay, so let me \-- if you don\'t mind, I\'d like to finish
this scenario, which is basically just the story, and then \-- the
reason we chose this scenario is because they have a nice graphic and
that\'s a nice starting point to describe the things you\'re asking
about, Gail. Would that be okay?

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

Sure.

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

Okay, great. So they\'re saying they have some kind of a shared PHR. And
somebody is educating him how to get into it, find out more information,
basically how to use it as a tool to manage his own disease, which also
includes joining a support group.

So this PHR also allows him to upload things from his home devices, such
as a glucometer, could also include blood pressure and could include
weight and so forth. But things from his home can be uploaded to this
system.

By graphing his results and actually it\'s interesting, this sort of is
much like the scenario I showed at the last meeting, he is connecting
the dots between what his daily routine \-- what changes in his daily
routine, how changes in his daily routine affect his readings, so it can
be changes in his diet, exercise, the amount of insulin he injects, so
forth. So this starts educating him not only on the generic principles
of diabetes and its management, but also what\'s happening in his own
body.

So together, Paul shares this information with his care team, the doctor
and can be all members of the care team, and they develop a personalized
management plan for monitoring Paul. And that explains to him, well,
look, this is how these things connect. You\'ll see this over time. And
this is what you should do in response. And what you should do can
consist of altering your diet, can consist of altering the time you eat,
it can consist of changing your medications. But those are all part of
his personalized plan.

It says here that Paul can also enter in things that the doctor may not
be specifically prescribing, or at least it\'s not \-- you know, it
doesn\'t appear in prescription form, that is, over the counter drugs
can be added to his med list.

He can also share this information with other folks in his life or other
caregivers, which may include family members or others, and that
describes here as having read-only access. And we should talk a little
about this later.

So he\'s able to share his information with other folks that are part of
the management of his diabetes. And I state that as there\'s people in
the health care professional side and also people on the caregiver side.

One of the ways he can share things is electronically. Another way is to
print out things and share with folks who do not have capability of
accessing an electronic version of this.

The final part of the scenario is that he might run into medical
problems when not in the immediate vicinity of his health care team, or
caregivers. And it\'s convenient that he can share his information from
his PHR with others, like in an ER setting.

Now, part of the scenario they describe talks about sharing a password
and I just want to sort of vehemently disagree with that style of
sharing information. But let\'s just say for the moment there is a way
to make available pieces of the information that\'s in this person\'s
PHR to other people who have a need to know.

And we can discuss how that might occur in a different way. On page 38,
there\'s a diagram and I think this might be one way to start
graphically visualizing what it might look like, and the
interconnectedness and I think that\'s where a lot of \-- both the value
and a lot of questions and issues will come up. So it may be an anchor
point and that\'s why we chose this, to discuss things and figuratively
and literally be on the same page.

So at the center, now I would suggest we take this conceptually rather
than thinking of it as what might be called an architectural diagram. So
in the center it talks about Paul\'s PHR, so when I say architecturally,
let\'s not think of this as a centralized database, for example, but
think of it just as a concept where lots of data and resources can
gather.

So we have Paul\'s information at the center, stored somewhere, and that
may be physical or virtual. What I mean by that, it may be actually in
one location, or it can appear as if it were in one location. Sort of
like we access things over the Internet.

So there are a number of people and organizations that either draw from
or feed into this PHR. And that includes around the rings or at 10:00
the PCP, then going around the circle, the specialist if needed, could
be an ophthalmologist, might be one example of a specialist. Clearly
he\'s going to have medications, so a pharmacy and pharmacist may play a
role in that. We can also extend that to folks who pay for the
medications and prescriptions, and that would include the insurer and
PBM. There\'s caregivers that may be family members, let\'s say, or if
you\'re in skilled nursing facility, it could be folks that relate to
your care there. And they all may have different views of the
information, or only see parts of the information.

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

And Paul, there could be intermediaries in some of these.

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

Correct.

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

Prescriptions being \-- being an obvious one. This is kind of the
simplistic version, but \--

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

Right.

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

\-- this could have many different things.

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

In fact, fortunately or unfortunately, it may end up in the tens of
people. I think HMIA estimated in a hospital setting there may be
something, I think it was like 143 folks touching your record. So this
is obviously a very simplified view of it.

And then to finish the circle was this diabetes educator, just to
illustrate, there\'s other professionals that are involved in the care
of an individual, not just let\'s say a doctor and a nurse. And then
that black bidirectional arrow is showing. And then you may need to go
outside of your local care team for special circumstances, whether
that\'s for out of town emergency access or let\'s say public health, or
research even.

So I\'d like to propose also adding into this circle, and that\'s just
so we can have depend something to \-- again something to discuss. If it
you were to draw an inner circle, so a circle that is just inside of
that ring of entities and folks, and this could be an optional one. And
what I might put there is an interoperable EHR. This is in concept only.
Doesn\'t mean there\'s just one. But the notion that\'s I think missing
from this diagram is there\'s another electronic space that is used by
many of these folks in the outer ring.

And if we look at sort of our voting that we did before, we talked about
the tethered PHRs being, we thought was one of our most likely ways the
PHR would be manifest. So that\'s why I think it\'s useful to put that
in, just so we can discuss it.

So now, let me answer \-- I think it was Gail, right, who asked the
question of what is it and where is it?

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

Yes, actually is it software that\'s sitting somewhere? I mean, where
\-- because this example shows that he was directed to this. So I\'m
trying to figure out where was it, how did he get access to it?

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

And isn\'t the \-- I mean, it could be many \-- since we\'re visioning,
it could be many different places. So it could include many of the
different kinds of personal health record we\'ve heard about. So this
doesn\'t specify, I think. This says \--

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

That\'s correct.

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

A personal health record of whatever sort.

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

Well, I guess what I was thinking, since he was directed by the
certified diabetes educator, is this some kind of software that the
doctors in this office had, or \--

**[\>\> Rose Marie Robertson:]{.underline}**

It could be, or it could be that they know that he works for a company
like the Omaha Meatpacking folks who have one, or they know that he
belongs to some other organization that he could do it that way, I would
think.

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

So this is exactly the reason we thought this kind of diagram would
help, because those are the right \-- those are the questions that come
up. And in some sense we need to sort of create a higher level concept
that says we either ignore how it\'s done and say there is a way that
you can store your information that everybody can contribute to ask
access with, with your authorization. And we go from there. Or
alternatively and maybe this is where Kelly and Larry can help
adjudicate. We can look at some of our voting and say, well, you know,
with the best of our \-- to the best of our knowledge based on
testimony, based on what\'s been out there and based on our personal
experience, we think probably it\'s going to look more like this. And
then try to paint what this is. And this is sometimes going to be in the
future. On the one hand that may ground this. If it\'s something like
this, and then what are the enablers and barriers to getting to that
world?

**[\>\> Rose Marie Robertson:]{.underline}**

So I guess \-- and maybe one way to get at that now that you\'ve sort of
set the context for us, would be to hear about this initial view of the
end state because that will give us some idea about where we want to go
and we can add to that. And it seems to me that the middle state is
where a lot of that is going to come in had. You know, the current state
is kind of what it is and we\'ve heard testimony about what exists.
We\'ll hear from Ross a little bit about where we think an ideal end
state may be not an ideal but maybe an end state might be. And then we
can devote time to sort of seeing where the steps might be. But I would
guess that we don\'t want to be saying we think this is exactly how this
should happen. We want to think about principles and the vision and not
the details. So maybe I\'ll move to Ross for this next section.

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

In the segue over to this next section where we start looking at the
matrix, maybe the first comments we can get from the group is do you see
this as a favorable end state that kind of looks like what you would
want it to look?

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

Ross?

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

Yes.

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

Good morning, this is Lorraine. Would you mind, or is it possible if you
can speak any closer to the microphone?

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

I\'m sorry, I\'m getting \-- I\'m just getting over a cold.

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

Oh, okay.

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

I can\'t project quite as well as usual. How is that?

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

That\'s super.

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

So I thought perhaps we could hear people\'s comments on their take on
this particular \-- especially sort of looking at the diagram and maybe
putting in that additional ring that Paul described. If this is the kind
of end state that we\'re envisioning as a group, that we can share and
build on, it\'s again more metaphorical concept rather than an actual
architecture for technology.

If I think about this particular diagram, I\'m always struck that people
tend to put their thing in the center of all arrow pointing diagrams,
and somebody else\'s view may look a little different from this, if
you\'re the provider or the caregiver or something else. It may not put
the PHR in the very center. But when you\'re looking at it of the
perspective of the patient and their harnessing of that PHR information,
this is how it might look. And two-dimensional diagrams always break
down when you think about complex multidimensional systems, even
three-dimensional things don\'t work because there are lots of
dimensions to this concept.

So any initial thinking that this is reflective of our general sense of
the end state?

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

Is this considered an untethered model, then?

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

I would say it\'s somewhat agnostic to that type of architecture. Like
we said before, the untethered \-- if the untethered you\'re defining as
something not having any connection with other tools, other \-- the EHR,
that sort of thing, no, it\'s not an untethered, meaning it doesn\'t
have to be associated with an employer or a union or a \-- some other
thing like that, there could be some independent entity. But yeah, it
could be tethered, it could be one, as Rose Marie pointed out, it could
be one that\'s associated with the Veterans\' Administration, because
that\'s where I get my benefits.

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

I\'m going to slide in and maybe help a little bit. We\'ve been doing
some of the visioning work with other workgroups and these are the types
of questions coming up. If I had to stick these pieces together, what
Paul just walked us through is in fact when you call this visioning, it
is a very good term because it is trying to give you a picture, a
picture of a future state. And the question, if I can just set up some
of these pieces, as Paul described the functionality of what happens in
that future scenario. Does that make you happy? Does that make you
smile? That picture of what happened in Paul\'s circumstances, does it
capture what\'s supposed to be happening in the end state with respect
to a PHR? It's a very basic question, is this what we\'re shooting for?

If Paul, or Ross, is then going to talk and walk us over to that far end
of the matrix, which is really in essence to take that picture and put
it into words, and it\'s sort of have we captured the end state
description, that picture of the future, if that makes you happy. Where
you will be going in the discussion in the mid-state and enablers and
barriers and your priorities is really addressing the question of from
where we are now, what is what we need to be thinking about and doing
and prioritizing to get to that picture. Some of the issues about
tethered and untethered will come in the middle. But the picture is
really one of functionality, what\'s happening. The question in terms of
what will get us there best, and again I\'ve seen some of the things on
your priority list, this is a picture that will help you in talking
about your priorities. It will help you in talking among yourselves.
It\'s also a picture that will help you communicate to the AHIC and to
others. This is what we\'re shooting for, guys. It\'s your target in
some ways.

So Paul laid out the \-- painted the picture. I think Ross you\'re going
to take us to \-- and there is a question on the table, about whether
this picture is the picture that you like for the future. All the issues
in terms of whether it\'s tethered or untethered, but what has happened
to Paul \[in the scenario\]. Is that in fact reflective of your view of
the positive end state scenario? Are there things missing? Are there
other aspects that you want to bring up? I\'ll probably sort of pull
back some of the issues as Paul said, the architecture, and say let\'s
hold on that, in terms of what it is that\'s going to get us there. But
I think what Paul and Ross are trying to do is paint that picture for
you. A picture that, if it works for you, then you paint for the AHIC
and for others what we\'re striving for. And if I can say, Kelly, the
pictures from each of the workgroups, need to have \-- and as Paul said,
we need to stick in the interoperable EHR need to make sure your EHR
Workgroup or the AHIC does, has an end state that fits well with yours.
If there\'s things they say are important for a PHR to do, there should
be a float back to you.

**[\>\> Rose Marie Robertson:]{.underline}**

So maybe we could kind of go around here and see if people think this
\-- if you like the picture. If there are things you think aren\'t here.
So how about \--

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

Could I mention one other thing. I think since we\'re the Consumer
Empowerment group, I think we have to all think about it from that
perspective. That is this going to be the best for the consumer.

**[\>\> Rose Marie Robertson:]{.underline}**

So we\'ll start with you. Do you think this picture makes you happy? And
maybe just so we get around quickly, let\'s maybe have everybody say in
30 seconds is something missing or not. Then we can go around again.

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

I think for consumers, I like this, actually that as long as the
consumer, wherever they\'re going, whichever provider they\'re going to,
that they have the ability to look at different PHRs and whichever works
best for them. I think it should always be from the aspect of what is
going to help the consumer the most.

**[\>\> Rose Marie Robertson:]{.underline}**

So you only like this if Paul can actually move from one place to
another?It's portable.

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

Exactly, Right.

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

I have a problem, if you turn to page 38, second paragraph, Paul has
just had a major cardiac event, and apparently his wife is trying to
understand exactly what\'s happened and enter it into a PHR. I, as a
clinician reading a PHR, I don\'t want to have that information entered
in by a layperson. I think if that\'s part of the end state, I think we
have to talk about it more.

**[\>\> Rose Marie Robertson:]{.underline}**

So reliability of data and what\'s the word.

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

Validity.

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

Yeah, validity.

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

There\'s a word that begins with A. that says that you \--

**[\>\> Rose Marie Robertson:]{.underline}**

Assured that the data is correct. And it comes from the source that has
the best sense \-- again, it\'s really \-- I guess it\'s adjudicating.
So his wife puts in things, we don\'t mind her putting things in, we
just want to make sure if it\'s an x-ray that goes in, the x-ray
actually \-- the report actually gets in there. And it\'s not that the
only thing about the x-ray is his wife\'s description of it.

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

I don't want to jump out of turn, but I think the idea of having
comments in a personal health record is a necessity. I think we have to
project that it be branded. So if my wife makes the comment, it will
have her brand. If my Aetna health plan makes the comment, it should be
Aetna\'s branding with it. The physician or the patient looking at it
knows where it came from.

**[\>\> Rose Marie Robertson:]{.underline}**

That would solve it.

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

Rose Marie, this is Lorraine and I\'ll try not to interject so much, and
I think \--

**[\>\> Rose Marie Robertson:]{.underline}**

Interject all you want.

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

Okay. So these \-- it\'s almost like we need a sheet that will talk
about functionality, because I think Paul has laid out a very beautiful
big picture. And then there\'s all of the really important details and
you know one of which we were just talking about, which is the ability
to designate or attribute the source of any of the information in the
document or the tool.

**[\>\> Rose Marie Robertson:]{.underline}**

That\'s a great point. So in the picture, if it we have it as a picture
or in the words if we have it in it words, we have to include some of
these other functionalities that are assumed in that middle circle, but
aren\'t actually laid out specifically.

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

And we may have to start with a parking lot list.

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

Right, I was going to suggest, is someone recording so the comment is,
if things are going to be entered into this thing, we need to know the
source, date, time, authentication, so forth. We might want to
accumulate some of these things. And some of them we\'ll be able to
generalize into bigger concepts.

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

I think we are taking \-- we\'re going to use flip charts and take some
notes on this.

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

We also have the writer.

**[\>\> Rose Marie Robertson:]{.underline}**

We have a writer.

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

But I also think and Rose Marie is doing is great job. What we\'re
doing. I want to make sure that people, because we\'re already into it
now and sort of gave you a break since you weren\'t feeling well, the
diagram is the picture. The far right column of the end state is in fact
the words that talk about what we\'re discussing. The attributes at the
end state or the PHR, and that end state. And I just want to suggest
that what just happened, happened when people raised concerns. That we
go not just concerns and then that\'s the end of the story, but concerns
and solutions, or concerns of what does it mean in terms of attributes
of the PHR, so we can really not just sort of come it a complete halt,
but really sort of say, and here\'s how you stress that. Here's an
issue, here\'s a problem, how it should be reflected in the description
of this. Whether it be branding the source of information, or other
approaches to sort of maximize the reliability or accuracy of the
information. But I think we want to push to make sure that we just
don\'t sort of end the conversation and we\'re sort of at loggerheads.
Let\'s see if we can break through as much of this as possible.

**[\>\> Rose Marie Robertson:]{.underline}**

One way to do that is if you have out in front of you the document that
has the end state, then as questions come up, we can see if it\'s
already there. So for example, one of the items that\'s already here is
the patients can transfer the information to another PHR easily and
seemlessy without losing data. That answers, we have that covered, your
question is covered, Kelly. Can be populated, portability is standard.

And let\'s see if we have the adjudicated data coming in, I think we do
someplace here. Let\'s see where the data is.

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

A number of concepts like the fact that it\'s sourced and verifiable as
to \-- as to the integrity of it. The nonrepudiation of the information
maintained.

**[\>\> Rose Marie Robertson:]{.underline}**

It might be that \-- one thought would be \-- here it talks about how
\-- this is sharing. We may need to say something explicitly about the
fact that the data that comes into it is in fact identified and branded
so that we know where it comes from.

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

Would this be included in the patient having control of their
information, the PHR, that implies there\'s sufficient methods that
exist for authenticating data or added as part of that \--

**[\>\> Rose Marie Robertson:]{.underline}**

I think we should add this.

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

This is Larry Bartlett. I\'m going to make sure you introduce yourself
on the phone.

**[\>\> Rose Marie Robertson:]{.underline}**

Did we have new people come? Make sure that these folks get a chance to
introduce themselves.

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

Also, we have a transcript and it\'s hard to follow later on.

**[\>\> Rose Marie Robertson:]{.underline}**

Oh okay, everybody should say who they are.

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

Just for the record we actually have moved very nicely into the
discussion of the end state. So what I want to do is expand the base for
the discussion and make sure we\'re working \-- I think people have the
sense the picture is translated into words and attributes and in the far
right-hand column, the description of the end state. As you\'re coming
up with your comments or talking with what you\'re comfortable with in
terms of that picture and those words going forward, make sure you\'re
taking a little stroll through that column and see if your issues are
reflected there. And I would say despite his weakened state, Ross Martin
is taking notes as we have a flip chart up here as well. So we\'re
capturing the comments as they come in.

**[\>\> Rose Marie Robertson:]{.underline}**

So continuing around the table and we\'ll go around the phone as well,
it seems to me there\'s an implied piece in this \-- in the picture and
description that Paul gave us, and that is that the patient is
sufficiently engaged with this PHR that he has continued to do things
with it over the years between now and years later when he has that MI.
Because if he did it once and he has become detached from it, his
current medications aren\'t in there, that information will be pretty
useless to the emergency room. So I think we assume that in here, but
something about the PHR needs to engage that. That\'s my 30 seconds. And
I\'m not quite sure I \-- you know, they have control of it, there is
\-- it does talk about patients and providers and payers and having them
engaged. But maybe it needs to engage, to be useful, it need to engage
the patient enough that they maintain it as a continuing record.

Okay. Next?

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

I think that this picture is what we\'re striving for, and I think the
text reflects that. I wanted to just make a comment about item 2, and to
make sure that endorsed \-- I\'m wondering if there\'s a different term
that would more readily imply evidence-based. I thought there should be
a comment related to health literacy, rather than relying on the word
understand.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay, that\'s a great point. So in two, would people agree that endorse
should say evidence-based?

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

Endorsed should say what?

**[\>\> Rose Marie Robertson:]{.underline}**

Evidence-based. So instead of saying some group endorsed, it we\'re
saying it really ought to only have stuff from groups that base that \--
their information on evidence.

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

Yeah, the trusted sites.

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

Should we use those terms? I mean possibly qualified, would that
encompass \-- see, unfortunately everything \-- well, unfortunately most
things in medicine are not evidence-based. So we need to have some way
of qualifying the information.

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

How about credible?

**[\>\> Rose Marie Robertson:]{.underline}**

Credible?

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

Credible doesn\'t necessarily imply criteria.

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

Which we don\'t \-- I mean, the term I have heard used a lot in some of
these is trusted sources, and sort of like the NCI, American Heart
Association. There\'s some that have either by dint of being Federal
agencies with some longevity, or, you know, some recognized experience
or representation that \-- and I don\'t know, maybe it\'s not even a
formal name just seemed to be trust site.

**[\>\> Rose Marie Robertson:]{.underline}**

Let me ask Kelly. So if this is going to be advice, you know, to AHIC,
then if, then we do need \-- are we \-- I guess are we saying that we
think that in the ideal setting, only good stuff should be in these
records and that somebody should assure that? By saying credible, or
certainly if we said evidence-based, or you know, whatever term we took,
we\'re implying somebody\'s going it check on that.

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

Yeah, I mean I think that \-- I guess what we\'re striving for is to
come up with a concept and in the end state, sort of a picture that will
communicate what we think will best serve consumers over time. And
they\'re not formal recommendations for presenting on October 31, just
our best ideas to date about what this changed world is going to look
like. And we probably shouldn't get overly concerned with the exact
interpretation of words but it\'s more important that we are sharing the
ideas of where we really want to go. So I think that the evidence-based
is a really good goal, and over time perhaps we really will have the
evidence-based information. It may take us a while to make sure that
most information that\'s shared, disease states or interventions or
prevention is evidence-based. But that may be what we need to be more
concerned about making sure we\'re describing it in such a way that
it\'s reliable. And trust I think is an element of that, but perhaps not
ultimately the most important.

**[\>\> Rose Marie Robertson:]{.underline}**

Right.

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

Excuse me. This is Anne Easton. I think another issue here is
transparency. If there\'s information on the PHR, it should have not
only the source but the limitation, and also how current the information
is. So that in the PHR, people understand where this information came
from and how current it is.

**[\>\> Rose Marie Robertson:]{.underline}**

So credible, if we\'re going to say something about the information, we
would say credible information from reliable sources. Credible up to
date information from reliable sources?

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

This is Davette Murray. I wonder if we could have a couple of categories
so people could have a focus like, for instance, initially like if
someone entered information from an institution that was JCAHO certified
that this came from an institution that was JCAHO certified, which would
I think be a higher category of trusted source information if you wanted
to call it that. As opposed to, you know, an academic educational Web
site.

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

One suggestion, there\'s actually a lot known about what are high
trusted, quality Web sites. And we might want to, for example, put a
link to something from the National Institutes of Medicine, about,you
know, disease states and health promotion, who have exhausted the list
of this over years rather than us trying to come up with this. Like
high-quality knowledge. You know, in parentheses, a link.

**[\>\> Rose Marie Robertson:]{.underline}**

And this knowledge includes information sheets about diabetes but it
also includes latest glucometer readings and latest hemoglobin A1c from
a reliable lab so it should include all of those things.

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

I do like the up to date. There are really a lot of outdated information
out there.

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

And most of those specifically require \-- some way stick to what are
already considered credible \--

**[\>\> Rose Marie Robertson:]{.underline}**

Better to not invent a new thing.

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

Exactly.

**[\>\> Rose Marie Robertson:]{.underline}**

Good idea.

So let\'s continue. Other items that you think might not be covered.

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

Thank you. And this is Kim Nazi. I wanted to clarify that when I looked
at that, my assumption was that was related to patient health education
information. And so after this discussion I hear that that also refers
to some of the other sources of data. But because that piece is specific
to the patient\'s health education, in other words, what kind of
references do you have to those kinds of materials and are those trusted
sites, it might add clarity so add that kind of language or include
that.

**[\>\> Rose Marie Robertson:]{.underline}**

You know, Ross, I want to ask you in the words here we have kind of in
two places. We have it under the previous description under number two.
The health information things really are also included under the
components. So maybe it just means that we need to be describing this,
we\'ll use those as Helen suggested, kind of modifiers in that section
as well.

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

Yeah.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay.

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

And probably focusing more on that section because the brief description
is trying to capture the entire concept in a very succinct way and we
can go into greater detail I think in the sections below.

**[\>\> Rose Marie Robertson:]{.underline}**

Right. It's probably under 2 we need to let them know that is several
kinds of information. Okay.

Other thoughts about what we don\'t have, or things you like or dislike?

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

I think I am basically okay with this concept. I think in terms \--

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

Who is speaking, please?

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

To explore a little more the actual relationship, the conceptual
relationship between this and the EHR, and how much of the longitudinal
EHR needs to be imported into our PHR ultimate concept.

**[\>\> Rose Marie Robertson:]{.underline}**

Sorry. How much \--

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

If you are trying to put all of the historical clinical information that
is in an EHR, or 20 years worth of medical history into a PHR, you\'re
going to have very manically cluttered PHR. As opposed to having a PHR
that is essentially a locator or a pointer to where the EHR information,
the good, the solid clinical information exists. Similarly, I think that
there is a role for the PHR in terms of immediate communication with a
new set of providers. Whether that needs to be the ultimate sharing
mechanism, or how one provider gets the complete medical history in a
reliable medical history for this medication, I think that is probably
going to be an over-expectation of a PHR. And that my concept of a PHR
is much more of the kind of communication that you know the doc relies
on patient to provide, as well as being a tool that allows that patient
to communicate with multiple sets of providers. But it is not
necessarily trying to duplicate all of those EHRs.

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

If I may, Sue\'s brought out a fundamental question that I think this
group needs to make a decision about, because \-- about what we\'re
recommending and what we\'re seeing as an end state. And one of the
things I think we need to state about the end state concept, we had in
our discussions over the last couple of weeks over the phone with Paul
and some of the ONC staff, is that we tried not to just tag it to 2014
although we tried to say what is the end state, where are we going and
where do we think it will be in around 2014 and 2010.

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

Who is speaking?

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

I\'m sorry, that\'s Ross again.

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

Sorry.

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

Am I loud now?

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

You\'re fabulous.

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

Sorry, I don\'t have my normal voice today.

So we do have to \-- we do have to figure out whether we believe that
the PHR should be the longitudinal health record for the patient in the
long-term. One thing I would point out by the longitudinal electronic
health record, it pretty much doesn\'t exist because the record
retention responsibilities for caregivers, for providers, health care
providers, isn\'t really long. And they don\'t generally keep records
for generations \-- you know, years and years. They keep them for some
years, not decades. And my \-- and the notion that we have even in one
place 20 years of health records is fairly rare these days, compared
perhaps to a couple generations ago because of our mobile society. So if
I had to make an opinion about a \-- a personal opinion about where I
think the long-term end state would be, I don\'t see anyplace else that
it really can be, but in a longitudinal patient controlled record,
because that\'s the only person who has the long-term onus and interest
to keep that \-- keep it for that. But that\'s one opinion. And there
are lots of other flavors of that along the way. And I think that\'s \--
I would like to take a pause and \--

**[\>\> Rose Marie Robertson:]{.underline}**

I agree, yeah.

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

And have a discussion about that particular question.

**[\>\> Rose Marie Robertson:]{.underline}**

I think that is a fundamental point. And the concept that this is a
pointer to other things, is one \-- is one approach to it, if those
other things can reliably be depended upon to be there. And I guess as
we go around and address this question, I think we need to keep in mind
this is the ideal state, so it\'s end state. But it really \-- this is
where we really wish it could be. And you know, for those of us who are
older than the 5 or 10 years our physicians might keep our records, and
who would really like to be sure that we\'re going to have access to
information that was 10 or 20 or 30, 40 years ago, I guess I agree with
Ross. No one is as interested in that as I am, for me. And so if it\'s a
pointer, it\'s got to be a pointer attached to something. And I think
clutter depends on the structure. So if most of the time you spend,
you\'re circling around this ring getting your prescriptions filled and
setting up appointments, you\'re not necessarily looking at old records.
But they\'re two clicks away, then they\'re \-- it\'s not cluttered the
way it is with paper. So it can be accessible in an electronic format in
ways that indeed, you know, we used to have to bring a cart into the
room with stacks of paper. If that information is stored in an EHR, it
still takes time to go through them -- but they're not necessarily in
the front.

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

This is Steve Shihadeh. I think if it becomes the full EHR or not, is a
matter of choice. Most people today wouldn\'t assume I\'m going to store
every lab I had during a 15-day hospital stay. But I might be nuts and I
might want it, and I might pay the storage fee for my PHR. So I think
that\'s the flexibility that will be left to the open markets to decide
based on what my passion is or needs are.

**[\>\> Rose Marie Robertson:]{.underline}**

Do you think, to frame that question again, do you think that you might
not want every want every serum sodium.

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

I might. I wouldn\'t preclude that now.

**[\>\> Rose Marie Robertson:]{.underline}**

You might. But you would want all the diagnoses that emerged from that
hospitalization and you\'d want some \-- you\'d want some of the
information. How much of the information, I think you\'re right; a
tricky question. Probably \--

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

Here\'s a concept of sort of something in between of these, because I
would agree that \-- sorry, this is Ross again. Thank you. I would agree
that, I would say what I described in a personal preference was not
precluding a pointer system. Look, I don\'t want to dump this all into
my \-- or on this Web site and pay a fee, monthly fee for this amount of
storage for the big surgery I had when I was 5 or something like that.
But I may. And at least I would want to know, for example, if I do have
a pointer to something, in a hospital record, from 20 years ago, and
they say, "the statute of limitations is up, I\'m dumping this, I don\'t
want to have to store this anymore, you have a right of first refusal
before I throw it away, do you want it?" If I\'ve maintained those
pointers to all this stuff, then it\'s my option at that point. Do I
think there could be any value to this? It seems like it\'s pretty much
history and I don\'t need it, then no. Or yeah, I\'ll take it and figure
out what to do with it.

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

That world, Steve Shihadeh, that world is going to change based on
storage cost and what you may want to do. What we think of today not
realistic, you may want that CT scan, but if storage is cheap \--

**[\>\> Rose Marie Robertson:]{.underline}**

Cheaper every day.

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

Yeah.

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

Rose Marie?

**[\>\> Rose Marie Robertson:]{.underline}**

Yes.

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

This is Paul. I\'m wondering if we should take it up a notch in terms of
the end state and description of the concept, rather than some of these
technical details? Because I\'m not sure we\'ll be able to solve it at
this point.

**[\>\> Rose Marie Robertson:]{.underline}**

Right, I guess the question is the issue of it\'s not sort of where \--
it seems to me the question we\'re asking is not where it has to sit, or
how much it\'s going to cost. But do we want this picture and these
words to include in the end state, the potential for access to all of
your medical \-- to as much of your medical data as you and your health
care providers and whoever think you should have. Do we want that
potential to be there?

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

And that fits into regulations \-- this is Lorraine, and other standards
that the providers have to meet. You know, whether that's today\'s
standard or tomorrow\'s.

**[\>\> Rose Marie Robertson:]{.underline}**

Right, so those issues might change.

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

And this is Larry Bartlett. It just seems to me that you\'ve just nailed
something that actually sort of almost validates the value of doing the
visioning when you\'ve got multiple workgroups. Because this is
something that seems to me that overarches your workgroup and the EHR
Workgroup. And that you have teed up something as Paul said, bringing it
up a notch. It\'s something that the two groups have to be talking about
this. So they don\'t assume you\'re doing it and you\'re not assuming
that somehow it\'s the EHR folks doing it if your principle, your
concept is that people should have access to their historical
information in some level of detail, and if in fact to the extent it can
be used through the EHR, fine, if they need the functionality, their
choice through the PHR.

**[\>\> Steve Shihadeh, Lorraine Doo, Rose Marie
Robertson:]{.underline}**

Right, right.

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

This is Gail.

**[\>\> Rose Marie Robertson:]{.underline}**

I think Helen was first.

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

I was going to say, I think it\'s really critical here for people that
have lifelong health problems, that we have to think about their ability
to not only have their records every step of the way, but access to
them.

**[\>\> Rose Marie Robertson:]{.underline}**

Helen?

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

I was going to make the comment that I think in some ways we\'re hinging
on this issue of whether the end game truly is integrated EHR/PHR and
Paul taught me just a couple weeks ago he doesn\'t like tethered. I
think integrated is a better word. And integrated version for me is an
end game. You can get away from some of these more specific issues that
trip us up. And poring over those 3-volume charts, 98 percent is not of
value. In some ways you would hate to throw the kitchen sink at somebody
when I think it would be more empowering for a patient to have somebody
with them or together to figure out what\'s the most important pieces of
the information you have in your hand so the next time something
happens, you can go through the three discharge summaries and those
clinical summaries from your doc. I think it\'s not always great to have
access to the universe. At times it\'s a negative.

**[\>\> Rose Marie Robertson:]{.underline}**

So being someone who has spent clinical life dealing with rare disorders
and very common disorders, that there is in an era when we are losing
the ability to phenotype patients at the same time that we have a vast
array of genotypic data, it\'s a little hard to tell, sometimes, what
key item is hidden somewhere back there. So can you keep it all in the
hopes of finding the key for a few people? I don\'t know. There are
storage limits. But I think there\'s some value in that. But if you have
a usual condition, you probably want every lab page and every lab value.
If you have ordinary problems, maybe not so much.

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

This is Steve Shihadeh and I don\'t mean to be disruptive about this,
but it\'s the consumer\'s record, and that he or she should have as much
ability to have to store whatever they want and as a consumer based on
my experience so far, I think I could do a better job tracking my record
and keeping the data than the average acute care hospital could. And
they\'re subject to time limits and they might purge and I wouldn\'t
hold my breath hoping they could alert me when they\'re about to purge
it. I would say I think the consumer should be the focus of this. And he
or she should have the say about what is stored and for how long. And
they\'re the only ones, as said, that really care. No one cares about it
as much as I do.

**[\>\> Rose Marie Robertson:]{.underline}**

Let me keep going around the table.

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

I think I agree. I think what I\'ve heard, too, is have a fully
integrated PHR, PHR/EHR, I think as the end vision. One thing I just, I
agree with a lot of what has been said here. I guess a couple things I
haven\'t heard said, I\'ve seen in here that I think are important. One
was on the second page when talk about the components and it mentions
the word repository and what I think is really critical, not a
repository where you have a central data warehouse where everything is,
but you need did good indexes and record locator services, I think a way
to point to where is that information, something we need to think about
at the end of the day, so that, if you have a fully incorporated with
the EHR, you know the primary care doctor and the hospitals and
specialists. And they have information. Personal health record,
caregivers, it goes along with source data but you really need that
record locator service and that index.

**[\>\> Rose Marie Robertson:]{.underline}**

Are you all hearing okay on the phone?

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

Who was that speaking?

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

Justine Handelman.

**[\>\> Rose Marie Robertson:]{.underline}**

Good.

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

And then just the other thing that touched upon in the end state I think
is critical and we probably all know are the standards and we\'ve talked
about the data, what are the standards that are needed and some are
existing and some are not and where are the gaps and where do you have
to work to? Because there must be standard that everyone uses and are
uniform to do. This that\'s really I think the critical component to
getting this in place and getting adoption.

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

Let me see if we have that.

**[\>\> Rose Marie Robertson:]{.underline}**

And we do have standards. We have standards information exchange
infrastructure and policies \--

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

If I don\'t have standards in this, then I should be fired.

**[\>\> Rose Marie Robertson:]{.underline}**

Yes.

\[laughter\]

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

Okay.

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

I also have a comment. This is Kelly Cronin. I was thinking \-- the
point you made about record locator services sounds like a great
enabler. For us to be thinking how are we going to get from the current
state to the mid-state so where we want to be to have a longitudinal
consumer controlled record that has all the historical information that
they want, have access to or want stored. That record locator service
would be a mechanism or enabler to get to that point.

**[\>\> Rose Marie Robertson:]{.underline}**

Great point.

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

Sounds like a business.

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

That\'s okay.

**[\>\> Rose Marie Robertson:]{.underline}**

Other comment around the \-- is Helen?

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

The only one I\'m not sure is reflected is I think in addition to the
integration part \--

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

That\'s Helen Burstin.

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

I\'m sorry. I\'m not sure there\'s much about the system should
incorporate some physician support. You have information but what do you
do with it? And maybe because Paul and I \-- I\'ve been really impressed
you can embed within a PHR, a way for somebody to use the information
and make better decisions. Instead of simply having lots of data put in
front of your face.

**[\>\> Rose Marie Robertson:]{.underline}**

So it\'s kind of including \-- sort of in number 2 in the brief
description, but we don\'t really describe that later. In the component.
So we probably do need to expand on it. Patient decision support,
that\'s a great idea.

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

And mentioned in our priorities, we have as essential later so \--

**[\>\> Rose Marie Robertson:]{.underline}**

In the end state.

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

That was Kelly Cronin.

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

I think the only thing that is jumping out, the data need to also be
personal. I may be a fitness buff, but I want to track my lap types or I
want to track my blood pressure base or \-- so a lot of this data looks
to me to be very acute care or chronic disease related. But I think
there\'s another angle on personal health and wellness that we want to
think about for an end state.

**[\>\> Rose Marie Robertson:]{.underline}**

Yeah, that\'s good.

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

I hate to be a naysayer but it has to be said.

**[\>\> Rose Marie Robertson:]{.underline}**

Identify yourself each time.

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

This is Rob Tennant. You could track your health care better than acute
care hospital. The problem here is this model, it\'s really predicated
on a highly motivated, highly computer literate patient. The reality is
the vast majority of people are not. And so we\'re cutting out 90
percent of the citizens. The way to handle this is say maybe there are
several models, and I\'ll talk about a couple. Let\'s just say, and
I\'ll pick on Justine because she\'s here. Let\'s say with the AHIC and
Blue Cross Blue Shield Association project, able to share data. So me as
a patient, I\'m going to be either giving myself or my providers are
going to be giving data from Aetna, CIGNA, and Blue Cross because
they\'re sharing it. It has nothing to do with me as a patient tracking
my data. It\'s done for me. Almost like when we go upstairs for lunch,
we rely on government testing the meat. That's consumer empowerment. So
we have to be thinking about payer to payer, and provider and provider
to provider. So you\'ve got a community health center who has folks \--
that are not going to be motivated like Steve. They\'re not going to
have the capability or the interest.

**[\>\> Rose Marie Robertson:]{.underline}**

Well, that\'s a very important \--

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

So I think we need to have multiple models. This one works beautifully,
but if you change Paul to Pauline, an 80-year-old Medicare patient, it
falls apart. The second thing, if you go back into the enablers,
there\'s nothing about incentivizing. The perfect model, if you go back
to on page 37, you\'ve got Paul and his doctor creating a monitoring
plan. Well, how are you going to get the physicians to participate if
they're not incentivized? Maybe there should be pay-for-performance --
the time spent populating PHR should be compensated.

**[\>\> Rose Marie Robertson:]{.underline}**

The assumption, and I don\'t think there could be a more important
point, the assumption is that there\'s going to be a personal health
record for you, even if you haven\'t or can\'t at this stage of your
life, or because of your level of interest, haven\'t said, hey, I want
one of those. But that there will be some repository, you can go to when
you decide you want it, and it will have all the old stuff.

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

Is that really a presumption of this?

**[\>\> Rose Marie Robertson:]{.underline}**

That\'s a question he\'s raising. So if you\'re an 8-year-old kid with a
chronic disease, maybe at age 30 or 40 you\'re going to say I wish I had
paid more attention to that and now I need to. And now I\'m going to
want to look at my personal health record. Has anybody been keeping it
for you in the meantime?

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

As I was looking at this and thinking about my opinion about what\'s
lacking in the model described, it\'s not exactly lacking but it\'s not
identified the way I might identify it. The diabetes instructor,
educator performed the function of a PHR facilitator and that was a role
distinct from being a their regular duties. Anybody could have done
that, including some independent entity that does that as a role. They
are called upon just like a specialist, just like diabetes or physical
therapist or somebody else, to get somebody integrated with their PHR.
Now, ideally in this end state I would say something that happens from
when they\'re putting the little imprint or prints of your feet on the
card at birth, part of that is getting you hooked up with getting \--
mom and dad hooked up with a method for starting their lifelong health
record. However, there does need to be a facilitation role, whether
that\'s provided by a caregiver, whether that's assumed by the person
him or herself, whether that\'s a State borne situation where you are
taking on that role because you\'re the Federal Government or the State
government is taking on that role because they\'re a ward of the State,
or whether it\'s an employer/payer, doing that. There\'s got to be a
facilitation role that\'s highlighted in this. Do people buy into that?

And then I just want to, before I hear that answer, in the document, we
do have the section on providers that says that health care providers,
especially primary care physicians, are key partners in realizing
widespread adoption of PHR, provided incentives are properly aligned so
doctors are encouraging adoption among patients. The reason that\'s in
there, as opposed to it just payers, we\'ve already talked about the
fact that payers have a base being in alignment with the need to be able
to deal with this. They don\'t necessarily \-- providers don\'t right
now have a very good incentive for encouraging patients to adopt these
things. And I\'ll just point out that you may be aware that Patrick
Kennedy, Representative Kennedy, just introduced legislation, PHR
incentive adoption. And that\'s an example of legislation is going to go
anywhere but it\'s an example of somebody thinking about this issue that
maybe we want to examine at some point.

**[\>\> Rose Marie Robertson:]{.underline}**

Ross, before we go to that because we have not \-- we haven\'t actually
asked folks on phone the first question. So each of you gets 30 seconds.
We obviously took more than 30 seconds, each of us. To tell us if you
like the basic picture, and the basic description or if you see things
you think absolutely should come out, or absolutely need to be added.

So let\'s say J.P. Who do we have on the phone? Kathleen, J.P.,
Lorraine, Paul.

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

and Davette.

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

Are you looking for feedback on the \--

**[\>\> Rose Marie Robertson:]{.underline}**

So look at the diagram and say, is this really end state I envision? And
if you think there are things missing, you have in front of you the
description and words of the end state, and see if it\'s in there. So if
it\'s \-- but if it\'s not included and you think it\'s important, we
want to know about it.

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

Rose Marie.

**[\>\> Rose Marie Robertson:]{.underline}**

Uh-huh.

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

This is Lorraine. I had a couple of comments if I may be so bold. As I
had said earlier, I like the diagram, I think it\'s helpful in putting
things in perspective. But a couple of things that either we can put on
a parking lot or talk about how they might be shown. And I think someone
else actually addressed it. One was the functionality in terms of the
usability and usefulness of it with the interpretation of the data. So
we have the diagnosis, we have the baseline, we\'ve got \--

**[\>\> Rose Marie Robertson:]{.underline}**

Is that covered, Lorraine, when we say endorse understandable knowledge
required for individual to act on his or her health information and
health advice?

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

Perhaps. But I\'m thinking really of what \-- even the kind of things
Paul showed us, which was the graphing, so if that\'s covered under
there, then yes.

**[\>\> Rose Marie Robertson:]{.underline}**

So we could expand on what understandable and motivating the patient \--

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

It\'s the anticipation \-- what you do with it.

**[\>\> Rose Marie Robertson:]{.underline}**

Absolutely. Great point, so we can expand on that.

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

And I had included that in 4, FYI.

**[\>\> Rose Marie Robertson:]{.underline}**

So an individual can understand their health condition.

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

Is that on another page?

**[\>\> Rose Marie Robertson:]{.underline}**

On Page 1 of 6 in the end statement. Number 4.

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

I was looking at the graph. I got it.

**[\>\> Rose Marie Robertson:]{.underline}**

That\'s a good point, maybe we have that in there.

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

And then I also agree with, what I think what Helen was saying, the end
game really is \-- so this EHR/PHR communication with a push-pull
mechanism where information can be pushed into the PHR, or can be pulled
into it. And that probably long-term, it\'s that ability to have
communication working both ways of getting information or providing
information from the individual and the provider. So I was calling it
push-pull.

**[\>\> Rose Marie Robertson:]{.underline}**

So let me clarify that. So do you mean that the information that all
information should be pushed into it as soon as it\'s \-- when it\'s
available.

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

And appropriate, because I don\'t think all things are \-- should be
instantaneous like laboratory and cytology and some things like that.

**[\>\> Rose Marie Robertson:]{.underline}**

Like we talked about having someone give I information about something,
okay, but the idea that you don\'t have to ask for your hospital records
stuff to be in there. It just goes in there?

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

That some minimum standard, let\'s say we come up with in terms of
content, would be available. End stage.

**[\>\> Rose Marie Robertson:]{.underline}**

I see heads nodding around the table. Yeah, should be there. You
shouldn\'t have to \--

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

I think \--

**[\>\> Rose Marie Robertson:]{.underline}**

Gail?

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

I think this discussion has brought up a very important point. And I
think all of you all have gotten this. Let\'s say right now, I don\'t
really care whether I have a PHR, and so I don\'t want to fool with it.
But let\'s say five years from now, ten years from now, I want one. Is
the information going to be there? I think looking at this, and it would
be interesting to know what the other group on EHRs are working on.
Because, will there ever be a time when information on patients will be
there for patients to \-- or people to access whether they want to right
now, when they want to right now, because Ross, as you were saying,
nobody really keeps records.

**[\>\> Rose Marie Robertson:]{.underline}**

That\'s a great point and we\'re capturing that on the board.

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

Needs to be fleshed out, I think.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay, so Lorraine, anything else?

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

My only last one, I know I probably used up my 30 seconds. And again, it
may be somewhere else. Is this issue of being able to communicate some
day with RHIOs or health information exchanges, or as we get into these
bigger global sharings of the ability to also push and pull\--

**[\>\> Rose Marie Robertson:]{.underline}**

Should be able to communicate with them?

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

Sorry?

**[\>\> Rose Marie Robertson:]{.underline}**

For the patient to be able to communicate with them?

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

That\'s maybe one source of their data.

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

I would like at that as a technical way this is done rather than this is
what \-- the what, not the how. What we are trying to lay out, what, not
the how. One can argue for example record locating service, if it
doesn\'t tie into a RHIO, or other health information exchange function,
I don\'t know how else you would do it. That\'s not what we\'re trying
to find here.

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

Thank you. Just what piece, though, what piece of that might be that in
fact we would encourage patients to be \-- if they\'re not exchanging
the data you care about, it\'s not going to flow into your system
ultimately.

**[\>\> Rose Marie Robertson:]{.underline}**

We should include something like that for end state.

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

Okay. I think consumer engagement in this whole architecture framework
is a good thing to think about, yes.

**[\>\> Rose Marie Robertson:]{.underline}**

We have eight minutes, we\'re supposed to break for lunch and we have
only done the end state and we\'re not quite finished with that. I\'m
now going to really hustle the people on the phone and I'm going to have
more around the table. Okay, so Kathleen?

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

Sure. I think for \-- surprisingly for once I probably will not add
anything at this moment. A lot of good discussion. I will have to say on
the visual representation, I do think even though that representation
may differ based on the end state of who is looking at how this PHR
interplays with each other, I think going back to AHIC and presenting
this out publicly, the patient should remain centric.

**[\>\> Rose Marie Robertson:]{.underline}**

Great. That\'s why the patient is there. Good to have the patient in the
center. Anne?

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

I\'ve been listening. I think you all are going in a very good
direction. So I\'ll keep my 30 seconds for later.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay. J.P.?

**[\>\> J.P. Little:]{.underline}**

Yeah, I\'m having trouble following along on the Webcast, but if I am
following the conversation correctly, I think I\'ll offer a bit of a
dissenting opinion on how data needs to get into PHRs or EHRs or
whatever. There really is no business model that would support magically
populating these systems. What the world that we live in, at RxHub, is
one where if someone needs information and they\'re authorized to get it
and the right contractual relations are in place, they\'re free to
request the information. If you think about what we represent, about 160
million patients in a master patient index and access to their data, and
the PBMs are not, you know, in the business of just massively sending
out content to PHR providers, or even EHR vendors.

**[\>\> Rose Marie Robertson:]{.underline}**

So, absolutely that is the current state, and so we\'re not even at a
mid-state. But would you \-- and granted we have no concept of what the
business models might be that might move it. But would you think that in
an ideal end state it would be if to have that? Or not?

**[\>\> J.P. Little:]{.underline}**

Yeah, if the business models would support that, certainly.

**[\>\> Rose Marie Robertson:]{.underline}**

And \-- yeah, we would need enablers.

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

I would offer my \-- this is Kat Mahan again. I would totally agree with
J.P. I think the business models need to be accomplished. It is an end
state want and goal. We are going to be doing this type of push of data
within the next month or two, into a PHR. But again, the business model
has yet to be determined. Just because we have the data doesn\'t mean
it\'s sustainable. But we\'re going to make an attempt.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay. Davette?

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

Yes, I\'ve been listening to what everyone has to say. I guess the one
thing that I\'m concerned about, as we talk about information exchange
is some tool that could do a reconciliation of the information between
the EHR and the PHR periodically, mark in the record any discrepancies
like one of the scenarios in your diagram where after Paul has his MI,
the wife is entering the information, I\'m thinking that parallel to
that the EHR, it has that same information. And you know, as a lay
person, if I was entering information, I\'m not sure that I would be
entering it as accurately as maybe the medical staff would have put it
in the EHR.

**[\>\> Rose Marie Robertson:]{.underline}**

Yeah, that\'s a great point. And actually, in that description, I also
thought that was problematic. It\'s one thing if she\'s triggering the
stuff to come, we\'ve already said in the end state we don\'t want her
to have to do that. We want that to be available and maybe to be pushed.

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

Right.

**[\>\> Rose Marie Robertson:]{.underline}**

If she\'s putting comments about things or adverse advents or whatever
it is that she wants to put in, that\'s fine. But it is a little \--
that\'s a little bit of a glitch in the description that goes with the
diagram.

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

Right. I think in the end state there should be some tool that\'s
integrated into any PHR that can do that comparison between the two.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay.

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

This is Eliza Moody from Microsoft. I like the vision. From what I see,
the consumer has a copy of the data, and can store it where, and share
with whomever they want. And it\'s dynamic. There\'s exchange between
the providers and patient. And I hope that \-- I\'m seeing all these
concerns and I would hope that we don\'t diminish the brightness of that
vision with these concerns because all those concerns are really where
we have to ask ourselves the question not what \-- how can we move our
vision because of these concerns, but what do we need to add to get to
that vision. Whether it\'s a business model, we need to create the
business model, or whether it\'s addressing the concerns of these other
consumers who might not have as much accessibility or education to get a
PHR, who are the new groups and organizations that will crop up in this
new model to assist them to get to that bright vision?

**[\>\> Rose Marie Robertson:]{.underline}**

Hear, hear! I think that\'s a great point. We don\'t want to get \-- I
mean, we have to think about the barriers and we have to think about all
the other things but it really is key to have the end state be a bright
vision. Otherwise it will be harder to get it to happen. Maybe even not,
because it\'s already \-- people are already excited about it and it\'s
happening to some extent.

Okay.

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

I think one more comment down here.

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

Christina from the American Medical Association. And this has been a
robust and really wonderful conversation and I\'ve enjoyed having the
opportunity to listen in. I think I\'m going to raise my one note I
talked about at the last meeting, and that is privacy and security.
Consumers aren\'t empowered when they don\'t always believe they have
privacy but they have it. And I think that that\'s something that I know
other workgroups are commenting on, working on, but I do think that we
are

\[indiscernible; audio disruption\]

\[lunch break\]

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

Lorraine and Paul, we have the streaming line that we use to put this
out over the Internet is dialed back in now.

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

Oh, it is, okay.

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

You\'re speaking to an audience.

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

Already in.

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

Okay.

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

Is looks like we\'re still kind of in a holding pattern here. Kat is on
the phone?

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

Yeah.

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

And we have Lorraine and Paul and Davette. I think we only had about one
or two more Workgroup members that were dialed in before, and then looks
like we\'ve got ONC back online as well? That\'s right.

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

Okay. Just kind of status update. Kat Mahan is on the phone. Lorraine
Doo, Paul Tang, Davette Murray. I know J.P. Little dialed in, we\'re
missing him. We almost got back to where we were.

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

Okay, thank you.

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

Everybody who is joining late, the public streaming line for the
Internet is also dialed in, so we have the public and workgroup members
I just mentioned.

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

While we\'re waiting for Rose Marie to join, this is Larry Bartlett.
I\'ve been playing a low key role facilitating because Rose Marie is
doing a nice job. Those on phone, though, I think you missed just a very
quick tail end discussion, because the lines went down. And the
suggestion was that because we had wanted to go through both the end
state and the current state before we broke for lunch, but the
discussion on the end state was just so productive and so helpful, we
\-- the thought was to essentially do what we\'ll refer to as a
lightning round. If\' you take a peek at the current state description
in the matrix, we\'ll very quickly go through that and really keep
people\'s comments to anything that really they\'re having a lot of
heartburn with in terms of written word on the far left-hand side. Not a
lot of discussion, not a lot of debate, just sort of say this is giving
me a problem, if we can do it in no more than one minute per person,
then we\'ll sort of take that back and clean up what seems to be the
irritant. And then we can go back in and really focus on the middle,
which is the mid-state and also the enablers and barriers.

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

Larry, this is Paul.

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

Yes?

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

We got cut off before I got my 30 seconds from the end state. If I can
eventually get that in, I appreciate it.

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

Yeah, we\'re just waiting for Rose Marie to come back, but we just
wanted to \--

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

Paul, the talk is we\'ll wait for just an another minute or so for Rose
Marie to join us because we don\'t want her to miss your thoughts. And
then we\'ll go right to you and then we\'ll swing back to the current
state.

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

Great, thanks.

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

Gail, the protocol is we give Rose Marie full professor status.

\[laughter\]

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

Ten minutes or 15 minutes?

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

I think 10 minutes.

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

Depends upon the institution.

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

And then everyone is out the door.

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

She actually was right behind us.

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

I think she stopped and chatted with Helen.

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

Right, but I mean when I was \-- Paul, are you there? Matt?

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

Yeah. We\'ve got \-- I\'ll give you another quick run down. Kat Mahan,
Lorraine Doo, Paul Tang, Davette Murray, and Mike \-- from OPM.

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

Yes.

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

So that\'s who we have on the phone.

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

Paul wanted to \--

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

I think it would be helpful for Paul and if it we need to recap for Rose
Marie\'s sake, we can.

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

All right.

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

Paul, you\'ve got the floor.

We\'ll make this the last piece on the future vision, and then we\'ll go
to quick comments on the current state and then we\'ll focus on the
middle piece. Go ahead, Paul.

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

Great, thanks. First I wanted to reemphasize and acknowledge that the
scenario that we read off at the beginning was part of the Markle
document and unfortunately, it carries the same name. I have no relation
to that. So I was studying that. I didn\'t want people to get the wrong
impression. I wanted to add my voice to others that talked about the
importance of the EHR, this is a personal opinion and based on our
experience, the patients place on that connectivity with the data that
comes out of providers and the communication tool. \-- or the effort
maintaining and those obviated by integrating it with the EHR. The third
thing I alluded to during the presentation of the scenario, the notion
that people can share passwords, I think I\'d really like to point out
that I think it\'s a bad idea and I know others were concerned about
privacy and security. But the notion that you can pose someone else is
probably something we have to explicitly prohibit. Otherwise it tears
down any hopes we had of authentication. That brings up another point,
authentication is a very difficult policy and technical challenge that
we somehow have to address in our end state as well as our middle state.
And finally, I think you probably already moved that, I was going to
suggest that we try move up a level and perhaps look at the end state
such as some of the summaries in that final column in order to make
progress towards our end goal for today. That\'s it.

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

Rose Marie, can I add on to what Paul said? This is Lorraine.

**[\>\> Rose Marie Robertson:]{.underline}**

Sure.

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

And I think you\'re probably going to say the same thing. The
authentication piece could not agree more and now that we have the
Confidentiality, Privacy, and Security Workgroup, or maybe it\'s
security, privacy and how we\'re going to tie in with EHR, it makes
sense we would tie in with what they\'re going to be talking about and
authentication I think is what was on their agenda, I think they've had
two meetings about it.

And also, I don\'t know if anyone else in the room was at the Harvard
conference, the personally controlled health record, now called PCHR.
Authentication and management was a huge issue discussed there. So I
think that should definitely be on our short-term and long-term state.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay. Okay, so let\'s move to the next item, additions to and comments
on the current state. And I think here we\'ve talked about this one a
lot. We all really sort of know and understand what the current state
is. The key thing here is to look at what Ross has gotten down for us as
a draft. And if you have any additions to this, or objections, let us
know.

So let\'s \-- let\'s start with the phone this time, and less than a
minute each, okay? Paul?

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

Can I pass to somebody else on the phone?

**[\>\> Rose Marie Robertson:]{.underline}**

Sure. Anne? Mike?

[]{.mark}

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

I just would like to say there\'s very, you know, currently very little
health literacy that is taking place, and I know this is jumping to the
end state again, but I did want to make a comment on how maybe with PHRs
there can be some kind of translation of the EHRs in regard to layman\'s
terms when people are accessing their information.

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

That\'s actually listed as a barrier in current state at the very
bottom.

[]{.mark}

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

Okay.

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

There\'s no health or IT \--

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

On current state?

**[\>\> Rose Marie Robertson:]{.underline}**

On the current state, if you look at Page 5 of 6. Under enablers and
barriers, under barriers the last one is low health or IT literacy.

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

I see it.

**[\>\> Rose Marie Robertson:]{.underline}** Okay we have that one.

Kathleen? And again if we \-- if this is something that we don\'t have
on the list now, and you think we need to add, and it\'s okay to say I
don\'t have anything to add.

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

Don\'t have anything to add.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay.

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

I\'m going back to end state. I\'m fixated on that.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay. Davette?

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

No, I\'m good, thank you.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay. Lorraine?

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

I think we lack incentives and right now some good ideas for incentives.
We\'re struggling, but I think it\'s a barrier because we don\'t have
the right set yet.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay. So \-- lack of \-- is that under lack of compensation for online
\-- that\'s a piece of it, is lack of compensation \--

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

That\'s \-- right, somebody \-- we have to agree on what the incentive
would be. Is it compensation, or what\'s the reward, what\'s the risk
aversion. You know, defining what those incentives are. And today\'s
incentives versus 10 years.

**[\>\> Rose Marie Robertson:]{.underline}**

So lack of incentives for PHRs. Okay. Let\'s go around the table here.

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

Rose Marie, sorry, I collected my thoughts now.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay.

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

A piece that I think would be important to talk about in the current
state is that although there\'s not a lot of penetration, I think there
is growing experience between the \-- with the integrated PHR/EHR model,
and the experience of connecting patients with their providers. So I
think we wouldn\'t want to ignore that as we move on between current and
end state.

**[\>\> Rose Marie Robertson:]{.underline}**

Under brief description do we say some current integrated \-- maybe some
current EHR, integrated EHR/PHR.

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

In a sense, so if we read the market, the PHR that has the largest
adoption, and that\'s in the hundreds of thousands, not millions, would
be the integrated PHR/EHR, and the satisfaction and the \-- with those
has been very high, both on the patient side and the provider. And in
contrast, current state, the stand-alone PHRs have faced challenging
times in terms of getting adoption, and we\'ve seen some companies come
and go in that space. So we don\'t want to ignore that data.

**[\>\> Rose Marie Robertson:]{.underline}**

And we may want to put that up front even in the brief description
because that kind of gets the \--

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

Okay.

**[\>\> Rose Marie Robertson:]{.underline}**

Obviously there\'s \-- there needs to be something like that under
interaction with health care system and providers as well. Okay. Great.
Anyone else on the phone? No, okay.

Okay, should we start down here?

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

A couple quick points.

**[\>\> Rose Marie Robertson:]{.underline}**

Remember to say your name.

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

Rob. First of all, I think current \[indiscernible\] there is a lot
going on. For example \-- actually got \[inaudible\] CCR, CDA
\[inaudible\]. Also something that is mentioned \--

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

Very difficult to hear on the phone. Hardly at all. Is any way to get
closer to a mic?

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

We\'ll move it around.

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

Currently say no certification process. I recommend that we have
something in the end state that recognizes that there is a certification
process that PHR meets that set of requirements.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay. Gail?

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

I don\'t have a comment.

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

This is Kim Nazi. I would like to add to the list of barriers, lack of
data standards, which fits in with the interoperability. In addition to
that I think they can be two separate things. And secondly, lack of
policy. I think what we\'ve experienced in the VA, now having overcome
some of the early technology barriers \-- kinds of policies that have
lagged behind the technology.

**[\>\> Rose Marie Robertson:]{.underline}**

And those would be policies directed at which specific things?

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

I think there are policy implications in several of the things. For
example, one policy implication is in the authenticating the user piece.
If, you know, I could see how there could be policy implications across
several of these different dimensions.

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

Sue McAndrew. Actually, I would second the comment that was made
earlier, I particularly \-- from the Web visits that we had as well as
the public testimony, that I was quite impressed with the current
functionality that\'s available on the current market for health
records. I do think interconnectivity is where they are lacking and
where the lack of connectivity on the underlying EHR basis is really
going to be key to moving this out.

**[\>\> Rose Marie Robertson:]{.underline}**

Is that \-- that we say minimal interoperability. Does that cover that,
that last point?

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

I do think that, right now I see that as one of the major difficulties
facing the PHRs. But I was quite impressed with all of the functions of
the different PHRs do make available to the VA and others. Private
vendors.

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

Justine Handelman. And I\'d echo what Rob and others said. I think
there\'s a lot going on out there that needs to be recognized and I
think what\'s going on out there is really the innovation to be a test
bed, if you will, and we\'re learning so much from that of where the
value is and I think a key thing when I looked at the barriers, one of
the barriers is, and hopefully what we\'re getting out of today and we
heard from testimony is understanding what is the value, the value of
PHRs for the consumers, what is the value for the provider so you know
what to focus in on.

One thing that is listed a barrier that I think can be described as an
enabler is prepopulated information. I know many of the employers and
health plans and others that may be doing this and have access to data,
might not be the perfect data, it is a start and being able to
prepopulate whether it\'s medication history right now from PBMs or
whether it's eligibility and claims data, I think some see as a real
value, and it promotes use and ease of use. So I think that could also
be listed as an enabler.

And one thing, I guess two other things I\'d like to point out. There\'s
talk of lack of compensation for online care. I really think that\'s too
limited of a focus right now. I think it might have been Rob who pointed
out needing incentives. I think incentives are important. I think what
we learn from employers, they were incentivizing. Their consumers use
this, their employees, providers have incentives. You need to look at it
broader. I don\'t know if we know enough about online care. It\'s very
limited. I know some of our plans are providing compensation for that
and even our plans that are, can\'t get at a time providers to fit it
into their work flow yet. So I don\'t know if that really belongs that
narrow just yet.

And the last thing I just want to point out is there are lists of some
stakeholders, but what I saw missing were payers or health plans. It
lists purchasers, policymakers, consumers and providers, but I think if
we're going to at any point to list stakeholders, I think payers and
health plans have a role as well. So, that would be that.

**[\>\> Rose Marie Robertson:]{.underline}**

Great points. Helen?

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

Just two small ones. First, under the brief description, that Paul made
the point about EHRs not being there in terms of integrating the EHR/PHR
model. And just a point of information where it said some type of health
information, usually manually entered, captured electronically, claims
and pharmacy data. It does miss the fact that much of it is in fact
captured electronically from EHRs. So that's been left out as the
dominant mode of information.

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

Great.

\[multiple speakers\]

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

I\'m sorry, trying to take notes on this. I lost your point because I
was trying to pick up her point. Justine, you mentioned \-- this is
Ross, by the way. You said that health plans aren\'t listed. We did have
purchasers listed and the notion there was \--

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

I didn\'t know if that was \--

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

purchasers and payers, all the people who might be purchasing, you know,
paying for this stuff.

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

It\'s just me, in my role when I look at purchasers are employers.

\[multiple speakers\]

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

There\'s nothing really listed here in the current state. We sort of
left the current state a little sparse, putting most of it in the brief
description and then parsing some of that out to the places where it
belonged in the buckets, but we can fill out. If you have a particular
state of being that you\'d like to talk about, related to payers and
purchasers, then that might be a good thing to think about what you\'d
want there.

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

Sure, and I\'m happy, you know, I don\'t know if we want to get \-- I
certainly think we know a good deal, at least from the payer perspective
of what\'s happening in the field of personal health records.

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

What I was thinking about, for two comments, was having mentioning like
some of these early efforts that are going on through AHIC, for example,
as places where this, you know, as enabler and as you said, enabler.

**[\>\> Rose Marie Robertson:]{.underline}**

Maybe we do want to divide here purchasers and payers. We should.
Because they\'re \-- I mean, I understand why you \--

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

So the difference between purchaser and health plan, rather than payers?

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

Purchaser and health plan/payer.

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

I\'m saying what about the PBMs and self-pay and the government, and so
it\'s \-- we could make that list of \--

**[\>\> Rose Marie Robertson:]{.underline}**

Those would be payers, wouldn\'t they?

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

Usually the \--

\[multiple speakers\]

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

Public and private payers

**[\>\> Rose Marie Robertson:]{.underline}**

Plans, public and private payers.

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

Very tiny point. The data could be either entered electronically as
claims and data pharmacy data as well as from the EHR, which is the
dominant mode of how we actually populate most of these things. Some of
these tethered models. And I think a point that I think Justine really
brought up well, I was looking at it more the interaction under the
health system. Something about limited information about the value of
PHRs to both patients and providers.

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

I have nothing original. I want to agree with the point about the CCR,
we think that CCR standard is really workable and can start serving
today as a standard for PHRs communicating with a wide array of things.
So I really think that\'s important.

I disagree a little bit with the comment about certification. At the end
of the day, the certification done for the HIS vendors hasn't changed
anything, I don\'t think. I wouldn\'t spend a ton of energy trying to
certify personal health records. Ultimately I think they\'re going to
get, the market will decide what\'s viable. You would expect us to say
that. And incentives for online care are a very interesting and
important dialogue to have but I don\'t think it relates to the PHR.
Now, if it is incentives for some methods to make sure people are
reimbursed for their trouble to share the data, I think we should note
that. But I don\'t think we should delve into whether physicians should
get reimbursed for e-visits in this discussion. I think it\'s an
important discussion and ought to happen but I don\'t see it as a PHR
issue. If I want to have an e-visit with my doctor, and my doctor wants
to charge me and my company wants to pay, or I want to pay, we've got to
figure it out, that can happen regardless of whether I have a PHR. I
don\'t think that\'s in this discussion.

**[\>\> Rose Marie Robertson:]{.underline}**

That\'s a good point.

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

It is, although I think \-- I know Paul and others have some strong
opinions on that. So maybe it\'s worth getting into that discussion when
we get into enablers, barriers, I think the broader issue of appropriate
reimbursement is relevant to our middle and end state if we want in fact
to be encouraging the kind of communication and sharing of data over
time between patients and their health care team. So you know, maybe as
was said, we don\'t want to think about it in a narrow perspective, but
if we want to think about the regulatory framework or the reimbursement
policy that\'s needed to make all of this happen, then we probably need
to be thinking about what\'s going to actually incentivize the
appropriate communication between a patient and their health care team.

**[\>\> Rose Marie Robertson:]{.underline}**

Right. I mean \-- and I think \--

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

I don\'t want to miss \-- I want to make sure my comments are clear. We
actually think e-visits are great. As a company we\'re doing it for our
employees. We want to have it happen. I just didn\'t see it as
inextricably tied to a good PHR. That\'s like saying, just in general
pay hospitals more so they can get more EMRs and there\'s more to
connect to.

**[\>\> Rose Marie Robertson:]{.underline}**

I guess what maybe Kelly was saying, and correct me if I\'m wrong, is
that if our \-- if our charge is to \-- is not just to comment on this,
but to encourage it because we think it would be a good thing to have,
then you know, then some of the issues might \-- that might encourage
people to use them, would fall under our bailiwick in that \-- only in
that regard, I guess. Is that \--

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

I would \--

**[\>\> Rose Marie Robertson:]{.underline}**

I mean, if it\'s encouraging to patients use them\--

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

But then where are you going to draw the line? I might have to incent
Pfizer to you know, incent to create a business model that made it all
happen. If we go to incentivize the model, I have to pay Pfizer to give
drug information. Somebody has to provide incentives all around.

**[\>\> Rose Marie Robertson:]{.underline}**

The incentives could come from the business model, I suppose. So I guess
it wouldn\'t necessarily \-- I mean, I suppose the word incentive
doesn\'t necessarily tell you where it comes from or what it is. It
might not be money. You know, it could be other kinds of things.

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

I thought we were \-- you can correct me if I\'m wrong, it\'s Lorraine.
Are we discussing each item, or are we trying to itemize the items that
need to go on sort of a parking lot that would have to have further
debate?

**[\>\> Rose Marie Robertson:]{.underline}**

Well, we were adding items \-- we\'re currently adding items \-- and
good for keeping us on task. We\'re adding items that we think might be
missing in the description of the current state map.

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

Right. That\'s what I thought.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay.

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

And these may be teed up as enablers.

**[\>\> Rose Marie Robertson:]{.underline}**

Right.

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

The transition, and I think Steve\'s saying, too, it may not be that
this sits right within this Workgroup. It may be one of those
overarching ones that looks to be examined in context of the overall
\--.

**[\>\> Rose Marie Robertson:]{.underline}**

So these comments have been in the interest of broadening item number 2
on the last page, or on page 5 to say last of compensation for online
care was maybe a little narrow and what we\'re \--

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

If I could, just one more try at it.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay.

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

Steve Shihadeh, could we just maybe phrase it so we think there need to
be proper incentives all around to make this happen? Because I think
there are different views on vision, on incentives. So Humana is
incenting its members who go to health club with Virgin Atlantic points.
There are lots of different ways to grease the skids of the system and I
just \-- it\'s too narrow to say reimbursement for.

**[\>\> Rose Marie Robertson:]{.underline}**

Online care.

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

Online care. It could be much bigger than that.

**[\>\> Rose Marie Robertson:]{.underline}**

I do hear \-- do I see heads nodding to see that incentives should be
broader than just reimbursement for on line care? Many nodding heads.

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

I thought we had that general category of overall incentives to figure
out what those were? Does that make sense?

**[\>\> Rose Marie Robertson:]{.underline}**

Okay. All right, so that was Steve. And Ross, anything else?

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

Maybe I\'ll take 30 seconds to respond to a couple of things. I\'m
wondering if we can\'t figure out a way to accommodate your notion that
I certainly see your point that online compensation doesn\'t necessarily
have to be a part of the PHR in order to be valid. When I think about
this group, we\'re the Consumer Empowerment group and that notion of
secure, bidirectional communication has to live somewhere. I don\'t know
where else it would live but here. But we can maybe point out in this
that it\'s not saying that all these things have to be packaged within
the context of a PHR. And it\'s a function of consumer empowerment. As a
suggestion, a possible solution. And both of you mentioned CCR. I\'m
certainly supportive of CCR, CPA, whichever one gets us to that point. I
know that it\'s not our task to pick standards, as this group. So don\'t
be offended if it\'s not in the final version. only because that\'s not
our job. And that\'s HITSP\'s job to choose those standards.

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

Absolutely.

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

So we\'ll tell them, go, you know, this has to be done, we have to find
those. And that\'s where that \--

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

I understand HITSP has the responsibility and that, but I think what
we\'re trying to say, we're on the same page on this, there is a
standard or multiple standards for transference of information back and
forth, that will promulgate PHRs, i.e., CCR, or whichever one they want
to choose. I\'m not hung up on it having to be CCR, I think that\'s a
great example that may or may not be the winner.

**[\>\> Rose Marie Robertson:]{.underline}**

Just as we might give examples of in the beginning that there are
trusted sources or that there are some integrated EHR/PHRs, there are
some approaches to standards \--

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

That\'s what I\'m actually saying here in the current state. Some
standards for interoperability and demonstration of the capability, with
limited use in the marketplace. There are no functional standards or
certification processes, we\'ve all talked about that. And the question
is even do we \-- is that a bad thing or a good thing?

**[\>\> Rose Marie Robertson:]{.underline}**

So no functional generally agreed upon standards.

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

There are no \-- meaning this is what the definition of a PHR is. Like
they've done for functional specifications for EHRs, which is now
through the certification process for HIT has that through a balloted
standard for HL7. There is no equivalent yet, for PHRs.

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

Right. But it is under development. And you might be on the Workgroup.

**[\>\> Rose Marie Robertson:]{.underline}**

As yet. We could say.

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

Right.

**[\>\> Rose Marie Robertson:]{.underline}**

Functional \-- no functional standards as yet.

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

There is a workgroup that has been authorized by the board of HL7 to
finish formally developing those and they are tied to the HL7 EHR model
and there probably are some members of this workgroup that are
participating in that and they're actually going to try to expand
membership. You know, on that particular workgroup. So it is pretty far
along and under way. But you\'re right, it\'s not been balloted or
adopted.

**[\>\> Rose Marie Robertson:]{.underline}**

The point on certification, that\'s actually \-- that\'s a pretty big
point. And so the way we have it listed up there, if certification
exists, that PHRs meet it, that\'s an end state decision. And certainly
to say now, no certification process exists, is a certainly a
description of the current state. We have it listed under components
required to support the vision, talked before about certification can be
pretty minimal or it can be broader. And there\'s a sense that we don\'t
want it to be too detailed so as to stymie the field. We don\'t want it
to be maybe, and I\'m not sure if there\'s agreement about this, I would
be interested in hearing. We want it to be something so that there are
some minimal requirements like privacy and interoperability. So do we
agree that there will be, should be, for the consumer\'s protection,
some sort of certification?

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

I would like to comment that I think we heard universally through
testimony from all the PHR vendors we\'ve heard from to date, that they
would be supportive of that baseline certification that would include
minimal sets of criteria for security and for interoperability.

I only want to point that out because I think we did get pretty good
public input to date on that point. And the other concept I think we
heard, which we\'ve previously summarized, was that it would be an
evolutionary process so that we wouldn\'t expect to have overly
burdensome criteria in the next, you know, one to three years, because
there\'s a lot of market innovation and we want to encourage that,
particularly when it comes to functionality. But we\'re also quite
concerned, recognizing that HIPAA in current law, the mechanism to
protect privacy and security with respect to PHRs, there\'s going to be
stand-alone vendors that will clearly fall outside of HIPAA. And just in
general, the concerns that exist, with privacy and security, and lack of
affordability in our current marketplace, that I think that as a group
we were leaning towards the consideration of this evolutionary process.
So that\'s what, I think we more or less heard over the last three
months, I just throw it out there to recap.

**[\>\> Rose Marie Robertson:]{.underline}**

So if that\'s what we\'ve heard, then in the end state additions, would
it be more appropriate to say that certification exists for critical
functions? And then we leave what that is, this is the end state,
whatever those critical functions are, have evolved by that time, and we
leave it without further description for the end state. Is that a \--
Rob?

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

One thing we ignored is the mid-states. We\'re coming back. It plays
into this.

**[\>\> Rose Marie Robertson:]{.underline}**

It does.

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

Obviously, have \-- I think certification is critical for a couple of
reasons. One is what Kelly said, a lot of these folks fall outside of
HIPAA. You can have test criteria that identify security and reliability
issues, then you can capture that focus without having them forced to be
covered entities. But the other thing is, I think our job is not to
identify the standard. I\'ll give you that much. HITSP already
identifies. I think our job might be to say whatever standard you
select, HITSP, it should have these parameters. Because that\'s
essentially our job here is to say here\'s what the PHR should look
like. Not the exact model. But here are \-- the overall thing. And if we
don\'t do, that we\'re going to be leaving the job \--

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

Right.

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

The way you proposed, having critical functions, being certified at some
level, I think that would give you the assurance of people looking for
that, the transaction they\'re getting.

**[\>\> Rose Marie Robertson:]{.underline}**

Is the real thing.

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

Yes.

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

This is the wording that I've got \--

**[\>\> Rose Marie Robertson:]{.underline}**

Okay.

There would be a minimal set of certification criteria that\'s an
evolutionary process that supports the floor but doesn\'t stymie
innovation. The idea being that whatever standards or certification we
have, is always just making sure the baseline stuff is, there there\'s
always room to grow. And that\'s actually, to me the end state is a
state of continuous improvement, not nirvana. Not we\'ve gotten there.
We\'re just approaching perfection. Toward nirvana.

Good.

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

Can I add something?

**[\>\> Rose Marie Robertson:]{.underline}**

Paul?

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

While we\'re on the topic of certification. May I give input from a
meeting that Kaiser and AMIA organized, one of the recommendations out
of that this group my consider, in addition to certifying an EHR, to
meet certain criteria, as CCHIT is doing, and then what we just
proposed, the evolving criteria for PHRs, is to add a criteria to the
EHR certification process that says they must provide for exporting and
importing data from an interest operable PHR.

**[\>\> Rose Marie Robertson:]{.underline}**

That\'s a great point and I think that interoperability is in here and I
think we just want to make sure we \-- that that\'s very clear. Okay.

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

I don\'t have any comments.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay. So, current state finished. Time to move on. Actually, this next
part will be \-- spent a lot of time on the beginning and end. This next
part will be interesting and really critical and important.

So we\'ll start out with identification of enablers and barriers, and we
have that as a specific item in the materials Ross has provided us. So
if we turn to page 5 \-- yes?

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

Can I summarize the comments I\'ve heard so far?

Additions to what we have down in.

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

Mid-state?

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

You may have \-- I think you flagged some on your \--

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

We need to \--

**[\>\> Rose Marie Robertson:]{.underline}**

So the ones marked on the red as enablers for the end state. One is good
\[indiscernible\] that\'s sort of the pointing function, the record
locator function. Second is incentives for providers \-- question pay
for performance. I don\'t remember hearing it said exactly that way.
Maybe I missed it. There needs to be incentives and actually that
incentives, there need to be incentives for multiple \-- for all aspects
of the system, I suppose. It\'s not just providers, right, and then
there\'s one that says, there needs to be a business model to support
the population of the PHR with data. And last, authentication issues
need to be resolved. So those are end state additions to what you have
on page 5.

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

I think those are identified as some of the enablers to get to that end
state.

**[\>\> Rose Marie Robertson:]{.underline}**

Right. So we\'re now kind of looking at the mid-state, and I guess
let\'s think about how we should do this. Ross, the things that are
enablers, that you have in the current state, are things that are
already working. And that are there to some extent. Obviously, the
enablers to get to the end state, some of those might move back into.

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

I'm just a little confused about the mid-state. I wasn\'t part of the
last meeting. But it\'s fairly minimalist. It's just a few paragraphs.

**[\>\> Rose Marie Robertson:]{.underline}**

It\'s the part we need to populate today.

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

What\'s the goal of having a mid-state, if you have a current state and
an end state? Is it sort of \--

**[\>\> Rose Marie Robertson:]{.underline}**

It's saying you can't get there all at once.

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

Is it a sense of getting to there might be some intermediate things that
we'd comfortable with so these are more processes in.

\[multiple speakers\]

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

What are the steps for incremental improvement. But I don\'t want to
carry us off \--

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

Right, this is a milestone kind of to see if we\'re getting to that end
state and this is where it\'s the sanity check that we\'re trying to do,
say what does it look like 4 years from now, 3 years from now that\'s
going to guide our immediate work, we\'re going to try to get to this
place and it\'s \-- you know, positioning it has some challenges and is
it attainable in 2010, well the idea is the minds around this table and
the people that have been \-- the testimony that we\'ve heard, where do
we really think we can be in 2010 that pushes it, but gives people a
clear set of \-- we think these are reasonable expectations for where we
should be from policy standpoints, from all these other things, moving
these into the enablers bucket. How much we\'ll be able to achieve in
actuality in 2010? Who knows. And part of it in my mind, when I think
about this process, if we\'re doing it well, to me the 2010 state looks
a whole lot more like today than it does look like 2014. In that, I\'m
assuming we\'re going to be doing a lot of foundational work in the next
couple of years that\'s not going to show as much end statishness of its
outcome, than will happen in the last couple of years before 2014, a
lot, the adoption curves will go up, the types of population that can be
supported by all this, a lot more of them. As opposed to we\'ve made
inroads and we see the path and it\'s really clear but now we have to
focus on adoption and utilization.

**[\>\> Rose Marie Robertson:]{.underline}**

Some of that is not necessarily predictable because it will depend upon
how much innovation and how much people manage to develop good business
models, how much, you know, it will depend on a lot of things that we
can\'t necessarily predict for now. So \--

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

Absolutely.

**[\>\> Rose Marie Robertson:]{.underline}**

I guess one process question would be do we want to look at the
description of the mid-state? First? And say here\'s a place we think
it\'s feasible to get to within the next 4, 5 years. Four, 5 years?
Kelly, what time frame do you want us to \--

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

You know, yeah, I mean \--

**[\>\> Rose Marie Robertson:]{.underline}**

2010?

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

I mean, I think that maybe we can think broadly about, you know, a range
of years, you know maybe between 4 to 8 years. What we want to try to
accomplish. And the idea, I think that Paul initially proposed, to focus
on the enablers and barriers before we fully describe what this
mid-state is, is so we can be reality-based. We can say this is what we
know to be our policy toolkit, our standards harmonization toolkit. This
is how we can foster the market, or how we can encourage innovation or
how we can realize different levels of interoperability. What are those
specific enablers and barriers that could realistically get us to some
incremental change over the next 4 to 6 years and I guess being sort of
reality-based and having that discussion and exchange is to think about,
okay, well, it\'s going to take us, let\'s say, 4 years to reach a
pretty good level of portability.

So maybe by 2010 we could have, you know, a core set or some kind of
real portability among certified PHRs. You know, thinking about how long
it takes to get the standards named and recognized and perhaps into some
type of certification process. And have that also be interoperable with
network services and starting to mature in about 4 to 6 years. That kind
of thing.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay. So some of it is how we \-- is the enablers that we think will be
needed and that we think are possible.

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

In a sense, it might be working backwards. So if we shoot for the end
state, then look at the enablers and barriers, how long will it take us
to get there, instead of shooting for some halfway...

**[\>\> Rose Marie Robertson:]{.underline}**

Okay. Rob?

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

I wonder ‑‑ not to ask question, but probably needs another column
because I think this is exactly right. We are talking about what is the
process. How do we get to current to mid-state and maybe from end state
to mid-state. These things should or have to happen in order to get
here. For example, demos, we need to have a PMS demo which they are
starting to look at to look at different models definitely for capturing
data. The results from those need to have standards. It is in my mind
not a mid-state as so much what is the process to get from where we are
now to where we need to be.

**[\>\> Rose Marie Robertson:]{.underline}**

We might be able to list those things as enablers.

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

Right.

**[\>\> Rose Marie Robertson:]{.underline}**

You know, and they will be, there will be some process in some of those
enablers. So both things you just mentioned we could list. You know it
will be an enabler if we have CMS project and the data's analyzed and
that will help inform things. So maybe without changing the matrix we
can still include what you are saying. Okay.

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

So as a plan going forward, I think that there have been a couple of
things maybe we can just crystallize. This list of barriers, these are
the things holding us back. You have done, I think very nice job sort of
painting that picture of the future state. So whether it is using your
future state as your target. That\'s your direction, where you are
heading. Maybe the discussion is to start talking about what are the
things in the short term that can be done to knock down these barriers
or lowering these barriers. And the criteria has to be that it is taking
you in that direction. That may be the way of doing it. And in some
ways, we can kind of doing a little reality test and how would that
change? Over the next four years, it is not a midpoint. It is just a
point in time. It is a point on the continuum to get there. But I think
you have got a good set of barriers identified and it sort of goes to
Rob\'s point, maybe not what needs to be demos. You can tee up that
conversation but what are you do ‑‑ whatever you have got, whether you
have got these barriers, start talking about what are the next steps
going forward. You can pause and say that\'s really all you can do in
the next 4 years. And you have got a residual situation. But then you
can talk in the next four or six after that, here\'s some additional
things we can talking about. And that\'s the scenario that gives you the
movement you are talking about and really places less of a premium on
coming up of a concretized picture of the mid-state but gets you working
off of current state barriers and everybody keep their eye on right‑hand
column.

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

Right.

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

Could we, as a first step, make sure we have a comprehensive list of any
enablers‑‑

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

Yeah.

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

I think that will help us to say, here are the things that need to be
done. Here is the second step. Let\'s take the ‑‑ what can we do first,
what kind of second step. What\'s going to come in five years, what\'s
going to come in 10 years.

**[\>\> Rose Marie Robertson:]{.underline}**

Let\'s spend the next 10, 15 minutes brainstorming that but no more. Not
much more than that time. Let\'s look at the enablers and barriers and
ideas for ones that are not there.

> Rob?

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

I\'ll start off. Barrier number 1 -- lack of public education ‑‑ my
mind, I would say, what is the solution, what are the action items? The
solution is probably coming up with defined materials that can get out
through various sources, that means somebody has to develop those. So
the materials that goes out from HHRP, HMA from all the trusted source
that is consumers are going to get.

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

I\'m getting a little bit more what you were trying to get at with that
extra column.

**[\>\> Rose Marie Robertson:]{.underline}**

Yeah.

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

So, okay, here is an enablers and so maybe that ‑‑ I\'m resonating with
that, that the idea of saying, okay, we want there to be, you know,
clear ROI for various stakeholders and models for aligning stakeholders.
Well in order to get to that enabler, here is the checklist you have to
do in the next couple of years. Demonstration projects that show the
ROI.

**[\>\> Rose Marie Robertson:]{.underline}**

Right.

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

We want, you know, clear privacy protection. Or you know, that\'s an
enabler now. How do we get there? Well there are more debates about
access to personal health information and policies that protect the
patient privacy come into place, a reform, or extensions to HIPAA or
whatever, whatever those things might be to facilitate the increased
ability, capabilities around information exchange exists.

**[\>\> Rose Marie Robertson:]{.underline}**

But let\'s pause a moment. So let\'s make sure we have all the enablers
and barriers we think we should have. So that\'s a good next step, Rob,
but let\'s hold that for the moment while we ‑‑ are there any other
barriers

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

working off that current ‑‑

**[\>\> Rose Marie Robertson:]{.underline}**

Starting from the first column ‑‑

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

Do want people from the phone ‑‑

**[\>\> Rose Marie Robertson:]{.underline}**

Absolutely.

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

If I may, this is Lorraine. And unfortunately I\'m going to have to sign
off at about 2:30. But I, working, so working off from our left‑hand
column I think someone had brought up the issue of standards. And I
would say for our mid-state an enabler would be the standards readiness.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay.

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

And the testing, I agree. I think it was Rob who brought up that we need
to test, and test the right things. Not just do one‑off pilots and
demonstrations but test the right things and identify what those are.
And I think those ‑‑

**[\>\> Rose Marie Robertson:]{.underline}**

In the area of standards, Lorraine, or do you mean in the ‑‑

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

In the tools themselves, in the source of the tools. You know, the
short‑term, is it a plan sponsored PHR is it a provider sponsored PHR.
Employee sponsored PHR what works best and defining what do we mean by
work.

**[\>\> Rose Marie Robertson:]{.underline}**

So one barrier is insufficient data about the results produced ‑‑

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

Yes.

**[\>\> Rose Marie Robertson:]{.underline}**

‑‑ by the value?

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

Right. The real usefulness. We all, because we are part of this, think
that PHRs are going to be a good thing. We don\'t yet have the audience
we are trying to get at.

**[\>\> Rose Marie Robertson:]{.underline}**

And I don\'t ‑‑ I guess we wouldn\'t be saying, you know, we think
somebody should do a study to compare these three broad types of PHRs
because again, we want lots of innovation and many models talked about.

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

Exactly.

**[\>\> Rose Marie Robertson:]{.underline}**

So it is just we think there should be more data gathered on the
functionality and value, on the value of ‑‑

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

Right. And the real ‑‑ you know, the outcome. The usefulness in terms of
behavior or health status and that\'s long‑term.

**[\>\> Rose Marie Robertson:]{.underline}**

Right.

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

We won\'t find that out.

**[\>\> Rose Marie Robertson:]{.underline}**

We won\'t get that right away but over several years you might get it.

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

We have some. But I think part of the barriers is not just the standards
readiness but we have not yet accomplished full collaboration in our
standards organizations. And you know, the ability to really reach out
to everyone who needs to be involved in that. It is a tough process.

**[\>\> Rose Marie Robertson:]{.underline}**

Okay. So collaboration ‑‑ so in getting to standards and enablers that
are collaborate.

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

Right. Right.

**[\>\> Rose Marie Robertson:]{.underline}**

Sue? Any other ‑‑ Justine? Other barriers.

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

I would add as we're having more experience with PHRS and we learn what
works, we have a public educational campaign to show the benefits ‑‑

**[\>\> Rose Marie Robertson:]{.underline}**

So the barrier, or enabler is lack of public education campaign about
benefits.

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

And I think goes beyond what Rob says about ROI. It is actually improved
health.

**[\>\> Rose Marie Robertson:]{.underline}**

Right.

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

And that may not be measured in a business model but instead patient
support wellness.

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

Right. Rob.

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

ROI.

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

Value.

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

And let me just suggest before we go to Rob‑‑ that works, I betcha for
you this group in terms of going through state to barrier, state
enabler. So it is a problem and it is an identification solution if you
want to say in the short‑term we could do X. Longer term, you know ‑‑
That will get this populated fairly quickly.

**[\>\> Rose Marie Robertson:]{.underline}**

Rob.

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

Two points. Just ‑‑ I mean \[inaudible\] ultimately we have to think
about case studies because I\'m not sure about you folks, I was amazed
hearing the case studies at Pepsi and Dell and IBM and Omaha, it more of
those could be brought out more companies would get interested because
‑‑

**[\>\> Rose Marie Robertson:]{.underline}**

Making the business case. So an enabler is, enablers are case studies
that demonstrate value and value ‑‑

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

And barrier is lack of a clear business case.

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

Yes. The second one which I don\'t think we have and have not talked
about as a potential barrier is legal. How does PHR fit into the
standard of care. So if a physician sees a patient, doesn\'t look at the
PHR, is there some malpractice issues?

**[\>\> Rose Marie Robertson:]{.underline}**

That\'s a great point.

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

Some realization that that becomes ‑‑

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

So I was going to bring that up. My name is Lynn Egan. I\'m in the
Office of Policy and Research for ONC. I\'m in charge of the RTI
contract for privacy and security \-- survey. One of the major findings
we are finding is business practices are based almost totally on
liability fear. \[inaudible\] By adopting these, by allowing the PHR
into my office setting, am I raising the standard of care, with patient
input of the data, am I not responsible for figuring out what is right
and what is wrong‑‑

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

So we have provider concerns, we have time, just sort of working it into
work clothes and we have got liability fears. And the potential enablers
or solutions are, where are you guys going on the liability side.

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

The solutions out of that contract, one example are \[inaudible\] and
conferences would be \[inaudible\].

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

So the short ‑‑

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

They could be State law solutions, not necessarily Federal.

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

Right.

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

And education, on what\'s the true liability.

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

But just to sort of demonstrate how it may fall out. Short‑term might be
analysis recommendations, implementation, could be State ‑‑ could be ‑‑

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

Short term might be education about the liability issue.

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

That\'s right.

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

Yeah.

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

And working with the physician ‑‑ State mathematical associations, the
national ones, arrive at a standard of care.

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

Yes that\'s ‑‑ would that be short‑term or longer term.

**[\>\> Rose Marie Robertson:]{.underline}**

You can start ‑‑ laugh. You could start that pretty early. You have to
have some of the data first but then ‑‑ yeah. Okay.

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

Maybe we can keep this to this pared notion.

**[\>\> Rose Marie Robertson:]{.underline}**

Yes.

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

This is Gail. I\'m kind of bothered about the fact that it appears as
though each of the groups are going through this process but yet each of
the groups don\'t know really what ‑‑ the other group. Is it possible to
get some sort of synopsis or something like that? Because, for example,
some of the barriers, enablers might be the same thing so ‑‑ we don\'t
know that.

> I mean, we are sort of ‑‑

**[\>\> Rose Marie Robertson:]{.underline}**

> But Kelly knows. \[laughter\]

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

> Yes, yes, yes, I\'m sorry. We ‑‑ I think are looking at this from a
> lot of different perspectives. I think that I have not ‑‑ I have not
> actually looked at dependent what the EHR group is coming up for
> enablers and barriers. I think chronic care certainly reimbursement is
> a really big issue for them. Inoperability is a big issue. Trying to
> figure out how to make sure that the policies are in track with a lot
> of the innovation of our time. And I think technologies for remote
> care monitoring are, maybe comparable to what\'s happening in your EHR
> spaces. There is an enormous amount of technology going on right now
> and that\'s really up to the market. So the challenge on our end is
> sort of how do we keep up to speed and figure out what policies are
> needed to track with all of that.

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

You might actually be ‑‑

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

Yes. Won\'t we know more at the end of the month?

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

Three days, I\'ll now know a lot more. EHRs and chronic care are
happening tomorrow and Tuesday or Monday.

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

And I think goes to Gail\'s question. One of the inputs or goals is to
raise to the service, to high profile these cross cutting issues.
Particularly where there are maybe different perspectives or some things
that the biosurveillance group that are PHR related and make sure they
get brought back to the respective group. Not the one that teed them one
but the one that has implications so you can have some cross cutting.

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

That\'s coming we are just not quite ‑‑

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

Let me see if I can summarize what I just heard, this concept in the
form of an enabler. That in that, in that mid-state. That by 2010 one
would hope, that we have a much more stable a navigable process for the
activities that doesn\'t exist today because it is all in start‑up mode
still. The ONC is only a couple of years old. AHIC is a couple of years
old. And some of them are just only a couple of months old. And we have
gone through now one cycle of the. One of the CCHIT certification
process. None of that is stable. It is all happening at once and in 2010
one could hope that we have got an engine that is working for this whole
process. And that\'s, it is a fundamental enabler for all these things.

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

Yes.

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

If this does not survive. This infrastructure that we are building if it
turns out to be that was an idea, but let\'s try something else then we
are going to start over again. And whether or not the first round of
work is super quality positive work, to me it is much more important
that the process is established and moving. So does that sound like an
enabler that people can live with.

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

I think just to deal with that the specific thing you could say is you
have an institutionalized standard ‑‑ process. You have an
institutionalized process to recognize and adopt the process in software
systems through the Federal procurement and private-sector
certification. You could be saying that there is you know, other
coordination between national, State, and Federal activities related to
all, what we are talking about.

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

And coordination between the private and public sectors.

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

And public sector is institutioned. So I think, I can\'t degree of what
you said more than we are really in a start up phase even though we are
2 years into it. And it is expected to be fragile. But it's also
expected that what\'s been started and initially funded, through
relatively modest funds, needs to be institutionalized and self
sustaining predominantly in the private sector but the Federal
Government will always play a role.

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

Yeah.

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

I think an another barrier with a logical enabler with is the current
lack of adoption with electronic health records particular layer that
have a PHR component integrated so a current barrier is PHR adoption and
enabler begin seeing more PHR adoption or whatever else it might be,
encouraging EHRs that are not stand alone but integrated with the PHR.

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

Yes great point. Folks on the phone, barriers with attached enablers?

> Let me take one. In the barrier that we have here, lack of public
> education from trusted sources. So I actually think that there is a
> lot of information from trusted sources that\'s available, you know.
> NCI and American Cancer Society, the American Heart Association,
> America Diabetes Association. That there is really good information
> out there. Why is it not in all the, you know, in personal health
> records or in electronic health records for that matter. And that\'s
> sort of business models and relationship development and those then
> licensing, et cetera. Even groups that freely license their stuff, you
> know, the environment is so influx that it probably has not happened
> yet.
>
> So I don\'t think actually it is a matter of creating the public
> education because I think lots of us have lots of that, pa that we
> have in our own places. It is a matter of getting it imported and the
> same thing would have been true for decisions for, you know, there are
> a number of places where decisions support is available. It is just
> not yet integrated and I think that\'s, business models. Largely. And
> it seems to me that that\'s going to happen because the personal
> health records want that information.

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

Right.

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

But it will take time.

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

So I\'m hearing that and how I\'m looking at that is, educational
information and for access and sharing is supported through standards
and the same is true for decision support. As a, as an enabler. If I
think about specific standards around that there is a lot of activity
going on in the ubiquitous anti‑credit organization for that for medical
education now they are working on consumer education. And as well as,
HL7 they are collaborating are HL7 through the info button standard.
Those are things that need to be addressed in a PHR level. Whether or
not those standards are the things that those, similar activity has to
happen in that way. Same is true for decisions support, and I can ‑‑ the
one thing I would suggest in that, and I think one of the reasons we put
decision support in the later, you know, really important but later
stage, is because the true ‑‑ it is some of the hardest stuff we have to
do in terms of determination, even development of robust standards to
support that. There is not a lot of ‑‑

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

From the PHR, yeah.

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

For either EHRs or PHRs. There is so much work to be done to be make
that ‑‑ you can build it into localized settings reasonably well and
there is great demonstrations of that. But in terms of being able to
publish a guideline and deploy it to a place you don\'t know exist
through standards that doesn\'t happen yet.

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

Rob?

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

I\'m ‑‑ words ‑‑ but I\'m going to ‑‑

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

Go ahead.

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

Number 7, I think, is the wrong approach. In terms of work flow. I would
change that to something like lack of PHR integration with current
physician ‑‑ something like that. It is not \[inaudible\] normal
\[inaudible\] procedure ‑‑ concerned about it they just don\'t do it and
then number 8, low health for ‑‑ I would say and/or. Usually one guess
‑‑ to the other.

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

So the enabler, the attached enabler to the provider.

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

Yeah.

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

The work flow issues.

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

Is clearly education outreach through ‑‑ medical organizations. It is
also ‑‑ backed begin to case studies ‑‑ talking about what Cleveland
clinic and Brown Antonio are doing.

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

So do you know what told them that.

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

Wait and see.

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

I mean, if we say it is education that implies we know what to educate a
physician practice. How to educate them. And I\'m not sure I know what
to say to a 40 patient group of cardiologist outside of Chicago.

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

It reminded me of a HIPAA standard that was created in 1996 law which
won\'t be out until ‑‑

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

Now, now, now.

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

That is claim \[inaudible\] you talk to the vendors and they say there
is no interest in it so we are not going to build it. You talk to the
providers, it is not available so I\'m not interested. You have to sort
of build a ground swell of interest. Maybe coming from the consumer, but
also coming to the provider directly. That\'s the only way there is
going to be some \[inaudible\]. The providers say, this looks like a ‑‑
run my business and provider better care. I\'ll look into it. And the
consumer saying, I want this because it is going to provide me ‑‑
\[inaudible\].

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

Okay. That\'s ‑‑ yeah. I think there is a lot of work in that one. And
it is really critical.

> And low health or IT literacy. Simpler. There are obviously many
> potential enablers. Lots of work on that one.

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

I just wanted to point out that in our last meeting, Will Crawford had
presented a lot of specific ideas on what some Federal incentives or
levers might be to address some of the issues we are talking about. So
in terms of trying to flesh out as to what both a barrier is and you
know, what might be the specific enabler that corresponds to that.

> I think we might want to turn to this document we handed out in past
> of our last public meeting. So for example, with health literacy, a
> consumer engagement or education, I think we did actually talk about
> the, sort of the how to there, the action item, Rob, would be to
> develop independent consumer education, campaign about benefits of
> PHRs. And I think we also heard from Bill Smith and other testifiers
> who are experts in social marketing that we are not ready to do the ‑‑
> got milk campaign and Paul instructed us as well. But we are probably
> ready to do a test, pilot, public consumer outreach campaign that
> would teach us what we need to learn, or teach us what we need to know
> to do this better on a broad scale. So we could actually do something
> big over the next five years. So maybe one of the short‑term enablers
> would be doing the public/private outreach campaign, in combination
> with a breakthrough. Which is part of our recommendation back in May.
> But do that based upon the research we know already has been done by
> the University Health Council and Maryland. We will get the messages
> right that balance the risks and benefits and they are tested and we
> know they have resonated at least in certain audiences. So do that and
> learn how both, you know, all the that is HA big capacity and know how
> with special marketing. And AHRQ and all the, the feds can get
> together to do their piece but we have the same messages for MGMA or
> AARP for all the patient advocacy. AHA. American Cancer Society. We
> work with all those groups with ‑‑ message. So it would be coordinated
> then we can valuate how well does it work or not work and how can we
> improve ton it to do something is larger scale. So I wanted to point
> that out as an example but I think we did flesh out what are some of
> the specific enablers and what kind of impact it might be having over
> times. We might want to refer to this document or refer ‑‑

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

Would the people be, I don\'t know if ‑‑ I love this document. And from
last time. It is ‑‑ I would want to see the community members have this
in their hands on the 31st. Is that something we could just say ‑‑

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

Packet, sure.

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

I thought this was really helpful.

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

This was a summation of what on the Federal side are ideas to be
pursuing. Obviously all the disclaimer that are interested opinions of
people that wrote it. But ‑‑

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

Right.

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

Actually, C complements this document quite well.

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

I want to add one caution here. You probably heard this on the
enrollment incentives when you start talking about Medicare
particularly. And enrolling ‑‑ PHR for the doctors and probably going go
nuts. Because we are hearing this. Because that means then that they
have to be ready for that. And so you know, there are some things on
here that sound really interesting. But then we might start getting a
lot of push back.

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

Well that speaks to a good asset of how we need to think through it. At
what point do we go full speed ahead with some of these ideas and at
what point do we two years down the road or four years down the road.

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

Right. It depends when we say enroll on a PHR we may be ahead of
ourselves in terms of it being a provider PHR ‑‑ electronic held health
record at the outset. We might be taking more step by step approaches to
some of those programs.

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

Right. So I mean, there would clearly be, as you put that project on a
timeline, there would be a number of necessary steps in the beginning,
including standards having to be there, including ‑‑ positions along and
educating them. Having the information. I mean if you say you
automatically enroll them, really what you mean is you automatically
have the information somewhere that can go to their PHR unless you are
going to have Medicare actually create the PHR. So there would be a
number. And a number of those steps would need to be tested.

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

Really outstanding material. Two groups ‑‑ Art mentioned in here that we
should consider. Because in my mind they are really perfect test meds
and that is.

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

The interhealth services.

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

You have also got a built‑in reporting. Because what you want is to have
a demo. Get it used and get the feedback and there is also the built in
mast as well and you have an underserved.

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

Undereducated.

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

Capability and that will really have is ‑‑

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

Now wouldn\'t we use the VA in my healthy vet.

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

They are in there. We are looking at ones that were not listed.

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

Sorry.

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

You actually talk about ‑‑

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

Yeah.

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

You come across ‑‑

\[multiple speakers\]

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

It is not in there. It is not in the ‑‑

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

I know it was in there.

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

I mean ‑‑ it is just not in the chart.

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

I don\'t think it is in the grid but it is in the text.

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

I mean in the grid under program evaluation.

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

On page 4.

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

There is a health service ‑‑

\[multiple speakers\]

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

There it is.

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

Great idea.

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

Great idea.

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

Okay. Finally.

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

So we are ‑‑ are we pretty clear that we have listed the barriers and
enablers that we think we need? Are we ‑‑

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

I would like to throw one in \[inaudible\].

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

Oh‑oh.

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

Someone is dialing.

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

I\'m going to put my Pfizer hat on just for a moment. I apologize in
advance. The whole notion of clinical research and connecting those,
connecting that PHRs, there is a lot of work that needs to be done to
establish that as the ROI potential of that. And some work, a lot of
work has been done on the EHR side, similar work needs to be done about
how you, can you use PHRs for patients for clinical trials and this all
goes into how do we build the business models and the sin testifies and
alignment for all this whole thing and make it valuable to everyone. It
is an area where the pharmaceutical industry and other people who are
doing clinical research, Federal entities, on and on and on. Academic
centers who need to be able to connect with these things for many
reasons. And I would like to see a mid-state enabler that a lot of that
standardization work has been worked out and a similar fashion some of
the ROI ‑‑ potential benefits have been laid out. And I would like to
hear peoples\' thoughts about that if there is any strong opposition to
that notion.

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

I guess the only initial ‑‑ that I would have, specific \[inaudible\] in
terms of it having worked with the research community and current HIPAA
environment at least, is some ‑‑ I guess the question on the utility PHR
for that role going to be, whether it is sufficiently universally used
by individual because, if it is, it is relied on but it is just a small
data of the population, then the research is going to be concerned about
bias because so ‑‑ preselection and as they are really going to be much
more interested in population based ‑‑ the universe alt of their sample.

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

‑‑ is the concept there that you know, there are, in some of the things
like the next cure cancer profilers and such. You can look up, it is
provided quite clearly, cancer trials. So what you are saying is there
are a lot of people that would be listing NIH, for example, would love
to be listing possible trials that people might sign up for on PHRs.

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

And ‑‑

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

And that might provide part of the business model for supporting them.

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

Going far beyond that, it would be ‑‑ the ultimate vision would be, I
have a personal health record that has my background data in it. It also
has my problem listed and medication, whatever.

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

Right.

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

One of the things that those standardized critical trial protocols do is
test up against that and present sort of prequalified clinical trials
that you might be a participant. In addition, there are a lot of people
out there who are, like frequent flyers for clinical trials, especially
early phase clinical trials and that\'s a large population that gets a
lot of high level care in the trials.

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

Yes.

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

But it doesn\'t interface with their personal health record.

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

Yes.

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

It is not shared with their clinical community later. And these are a
whole bunch of other.

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

Right.

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

Cases and demonstrations of this that, at a longer conversation we could
go into.

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

Yes.

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

And they exist and need to be built out.

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

Although there is a bias to that selection as with any other, if it is
described you know, I suppose it is ‑‑ you know, it is valid insofar as
you can describe it. And compare it to other things and such. So, you
know, to provide people more opportunity to participate clinical trials
is a huge benefit to the education.

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

Certainly in terms of allowing the individual.

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

Yes, access to.

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

Find ‑‑

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

Oh, yeah.

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

‑‑ things they would be interested in is definitely a positive.

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

Yes.

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

The negative is also a privacy concern, is allowing these third parties
with an interest in the individual to have direct access to that
information without the individual\'s knowledge.

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

Ah.

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

I couldn\'t do that.

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

No.

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

Clearly ‑‑

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

There would not be ‑‑

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

And the information to them and make it available to them.

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

No, no.

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

So ‑‑

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

On the other direction.

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

And that\'s really to me, one of the most positive aspects of why the
PHR long‑term is really the place of this kind of thing should be done,
more than the EHR because that patient then has absolute coil over how
much they are going to ‑‑ is there a value to them of, yes, throw my
aggregated information in this pool and once you have a hefty number of
peoples on these, active surveillance, active ‑‑ outcomes reporting, on
and on becomes big value there. And the patients consent, approval.

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

Regardless of the head, that was a good thing to bring up.

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

Can I ‑‑ offer ‑‑ Amy and we can make that available, published sort of
a white paper on secondary use of data. And I think there is a lot of un
‑‑ the secondary use that already exists has gotten ahead of policy. And
privacy protection so there is a lot of misuse of data for profit
currently going on mainly because there is a lack of policy. So I\'m a
little nervous including that as part of the vision without a lot of
other, without further characterizing all of the protection.

> I don\'t think it is going to be possible for individuals to direct
> this piece going to that entity and so on, so for the because we have
> been through that in all of other discussions related to let\'s say
> HIPAA and Sue is certainly aware of that.

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

You think that they would be able though to say I want to hear about ‑‑

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

That\'s no problem. That is no problem. I\'m nervous about extending
access to people for a lot for good intents but unfortunately we don\'t
have the policies to protect the bad things from happening.

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

So this might be an end state sort of thing that we need things in place
to get us to.

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

We would have to add a lot of qualifiers in order to ‑‑

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

Yes what I was trying to get at for this midterm goal is, doing exactly
that scholarship. It is saying what are the parameters in which that
kind of activity that has potential high value would be done. And not
get ahead of the policy curve. Get those policies in place. Figure out
what those needs to be to be. That\'s sort of the mid-state for the
future state.

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

Okay.

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

Just present one more barrier. Steve Shihadeh and I think we have
covered it a couple of ways but I want to cover it one more time. We
believe there are data liquidity issues in the system. What we mean by
that some physicians wouldn\'t feel comfortable looking at my PHR if I
showed up with a perfectly accurate well populated PHR. Getting data
from the physician or hospital has a lot of hoops and things to go to
and there needs to be legislative clarify or policy clarity on that in
order to support the free movement of my information as a consumer.

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

So patients would, the doctors wouldn\'t be comfortable looking at your
data because?

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

Well, again if I just show up with it, it doesn\'t have the same sort of
chain of evidence as if they get it faxed from another physician, okay?
And.

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

Patients often walk into the office with it.

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

I understand.

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

And there is some doctors reluctant even to look at that. Our view is,
looking forward, that\'s going to change. I\'m going to have, either in
the cloud or on a memory stick or in some way, I\'ll have my personal
record and it should matter. So I don\'t know where that would fit. I
know people think about changing HIPAA and it gives them hives. But at
some point it will really hope to have this free movement of data, its
got to be dealt with.

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

Is the ‑‑ I mean it seems to me as a physician, the only reason I would
be uncomfortable looking at data is I might think I don\'t have it all.
And so I always assume that I don\'t have it all. That I\'ve gotten is
what I often have are Xeroxes of hospital charts.

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

And ‑‑

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

And I won\'t even look at just the position is how would I as a consumer
go approach a hospital and ask them for my record. They wouldn\'t even
know where to send me or how to go it.

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

They would. They would send you the hospital record.

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

Would they give it to me my whole record.

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

They would, your whole record ‑‑

\[multiple speakers\]

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

Some would not do it properly but they would do it.

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

No but it could be spread across multiple departments. But if we want to
encourage this, we have toll lay out, there is some support for the
consumer\'s clear right without hassle to his or her information.

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

Right. And ‑‑

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

\[Inaudible\] letter.

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

Good.

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

Of HIPAA problems. We need people to start reporting when they don\'t
\[inaudible\].

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

And they don\'t get it.

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

Report it \[inaudible\].

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

And maybe ‑‑ maybe some education and ‑‑

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

Included they should report it to you.

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

As a public that will not happen, they play a role in having access to
it. \[Inaudible\] ensure that data is ‑‑

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

Used to be easier to get it.

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

You are putting the onus on the patient though. Whereas the providers
need to be told again and their workers need to be told that patients
have a right. The problem is, the entity may know what HIPAA replies but
the average worker in the provider setting does not know.

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

And the entity.

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

And the patient if you are trying to get your record you almost have to
have an act of Congress.

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

I have Power of Attorney, I\'m a HIPAA lawyer. I couldn\'t have access
to ‑‑

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

Exactly.

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

And you said that ‑‑

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

You don\'t know who I am.

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

Council at the hospital ‑‑

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

Right.

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

Lawyer and people are ‑‑

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

And I think ‑‑

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

Right.

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

People don\'t need to do that.

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

Thank you. You made my point.

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

That\'s a great point.

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

That\'s a battle. We have got to get clarity around that.

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

That\'s a barrier to be dealt with.

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

Very early on, remember, Kelly ‑‑

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

Right of access to your records ‑‑

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

Reach hospital, risk management.

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

And they are the ones preaching the freedom here and they are all
\[inaudible\]. As well. They are going above and beyond HIPAA.

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

Right.

**[\>\>\
]{.underline}**They don\'t want the ‑‑ they don\'t want the litigation.

**[\>\>\
]{.underline}**That\'s true for many aspect of HIPAA.

**[\>\>\
]{.underline}**So one of the major issues with IPHA for clinical
research for access, for all of these, is that people took HIPAA and
said, first I\'m very afraid. And I\'m going to interpret this in a way
that I need to protect me. And much of it is really unreasonable. But
there is the not ‑‑ I mean there is education for people to say ‑‑

**[\>\>\
]{.underline}**And there is ‑‑

**[\>\>\
]{.underline}**You know, you really don\'t have to do this ‑‑

**[\>\>\
]{.underline}**The thing I ran into the most is there is not sufficient
understanding \-- is we are not going to head into monetary
\[inaudible\] unless you are going to ‑‑ hurt someone for monetary
process. You are going to get a corrective action plan. We are going to
help you out how to \[inaudible\] that needs to be ‑‑

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

**[\>\>\
]{.underline}**Take that too qualified. I\'m not sure ‑‑ without having
to go and get it. The issue is can you get it in a timely and low cost
way.

**[\>\>\
]{.underline}**That\'s right.

**[\>\>\
]{.underline}**But the patients go and they are asked to pay a quarter a
page and they want to do that and they say come back in a month and you
are going, consultant two, three days later.

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

**[\>\>\
]{.underline}**So I think a barrier, trying to get back to the model
here. The barrier is that there is not, the liquidity but it is also you
cannot get it in an efficient and low-cost manner.

**[\>\>\
]{.underline}**And we have that in here someplace. Need to emphasize
that.

**[\>\>\
]{.underline}**Other barriers, beyond the HIPAA.

**[\>\>\
]{.underline}**Okay. So I think we all understand that and feel it
strongly. We are not going to talk about ‑‑

**[\>\>\
]{.underline}**Something else.

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

**[\>\>\
]{.underline}**It is really point though ‑‑

**[\>\>\
]{.underline}**We had a member from the public at the September 18
Community ‑‑ testified on that wanted to come back to him.

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

**[\>\>\
]{.underline}**‑‑ at that testimony again, testified ‑‑ barriers.

**[\>\>\
]{.underline}**Rob?

**[\>\>\
]{.underline}**Good point. HIPAA, as you know, says that the patient has
30 days plus ‑‑ 30, plus they can charge costs. But I think the
important point Steve glossed over is he goes in the PHR, the if I
signatures can\'t see it. Well, 86 percent of physicians don\'t have any
PHRs, most don\'t have a computer with Internet access right there at
the examination room. So what do you do? The physician is force today go
to the back room where they do the billing to pull up your records. So
we have to be cognizant of the real world which means, if you go in with
a PHR, A, you might want to call ahead to find out what they can do with
it. You may need to print it up at home and bring it in as a paper file.
I\'ve never found a physician who was not willing ‑‑ they love it when
patients come in with their medical history on paper.

**[\>\>\
]{.underline}**We need to list this as a barrier more clearly in the
current state because you have it at the end state saying that, you
know, your barrier is really that there is not widespread EHR adoption
and that needs to be here in the current state.

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

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

**[\>\>\
]{.underline}**Not even EHR. But technical capability.

**[\>\>\
]{.underline}**Over time. Once we get them to give it to us on paper.
Then we are all going to want a digital.

**[\>\>\
]{.underline}**That\'s right.

**[\>\>\
]{.underline}**And someone like Kaiser have already thought through
their governs on that and they will give it digitally if they ask ‑‑ I
think you know, it is coming. But.

**[\>\>\
]{.underline}**HIPAA allows the patient to ask for their record
electronically.

**[\>\>\
]{.underline}**Okay. We have only an hour before we need to move to
public comments. And we had another whole item here, or for discussion.
So we need to really close this out.

**[\>\>\
]{.underline}**Thank you.

**[\>\>\
]{.underline}**And so we have talked about the enablers, barriers, we
think we have them all. If you think of another on the way home you can
call Ross and ‑‑

**[\>\>\
]{.underline}**Actually I do have one to add maybe Lin would like to
articulate, too. I\'m wondering if we do, if we want clinicians to be
engaged and using these tools over time as appropriate. And sharing
information as appropriate with consumers. Do we want to be thinking
about having Kirk ‑‑ I guess in nursing and medical schools that would
really get them up to speed on the value and the use of these schools,
as they can be appropriately up to speed. And I think realistically
changes to curriculum are, maybe not impossible but they take a really
long time. So that may be sort of a longer term, in terms of acting on
it. We would have to account for several years but ‑‑

**[\>\>\
]{.underline}**It is not so much the curriculum. It is whether they can
use the product in their training.

**[\>\>\
]{.underline}**Mm-hmm.

**[\>\>\
]{.underline}**So they don\'t have to have a course on it. If the first
time they go to the ward in fact that\'s the way you do things.

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

**[\>\>\
]{.underline}**So although the curriculum would be good and is okay,
really it is a matter of getting the EHRs into training hospitals.

**[\>\>\
]{.underline}**And actually, I\'m wondering.

**[\>\>\
]{.underline}**And flags.

**[\>\>\
]{.underline}**Specifically point out that nursing medical students
rotate through the VA and have a wonderful EHR and wonderful PHR but
they could be trained on both. But my healthy vet in addition to what
Vista does.

**[\>\>\
]{.underline}**So encouraging the VA to make sure that ‑‑

**[\>\>\
]{.underline}**It is really ‑‑ point. Snapshot anecdotally I was with a
very large hospital in Seattle last week and they have a very well
installed EHR. And I asked the CEO to describe the happiness level of
his physicians. He said, the older third are happy because they are not
really using it. Okay? They had a subset. The middle third age cohort
was the happiest and the younger ones angry because after they have
trained they have seen better. So I suspect that group will push us all
‑‑

**[\>\>\
]{.underline}**That\'s a great one.

**[\>\>\
]{.underline}**And I mean ‑‑

**[\>\>\
]{.underline}**Okay. So ‑‑

**[\>\>\
]{.underline}**And there might be another, in terms of a specific
enabler, the graduate medical education that Federal Government largely
funds might be another lever that we could look at.

**[\>\>\
]{.underline}**Really, the ABIM and I guess the same thing could be true
for nursing, since it now talks about quality as one of its modules, one
of the issues is including quality items. And although you don\'t have
are to do that, through in the EHR that in fact would be anticipated do
it and documented. So that, you know, that encouragement will help ‑‑
will help as well. So maybe specific discussions with them ‑‑

**[\>\>\
]{.underline}**It is actually the entire ‑‑

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

**[\>\>\
]{.underline}**It\'s not ‑‑

**[\>\>\
]{.underline}**That\'s right.

**[\>\>\
]{.underline}**They all have quality. \[Inaudible\].

**[\>\>\
]{.underline}**Some of the ‑‑ like I believe it is the American Kaiser
for Pediatrics, maybe the family practice have the same, they have taken
those principals. They have built into a lot of ITs' capabilities
because they have to ‑‑ a lot. And that does have a, and they also talk
about what they want their residency training programs to look like.

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

**[\>\>\
]{.underline}**That all of them will have EHRs by a certain date. And
that ‑‑ as I thought about that, to me the best place to apply this is
at the training level, not necessarily at the school and, you know,
medical education. Clinical practice level, residency ‑‑

**[\>\>\
]{.underline}**And that\'s ‑‑ special training, one of the chasms.
Should be an informatic curriculum across all health professionals.

**[\>\>\
]{.underline}**X‑ray techs.

**[\>\>\
]{.underline}**And huge workforce issue. We really don\'t have the
workforce set up to handle the needs of the next decade or more?

**[\>\>\
]{.underline}**If we are allowed to talk about curriculum, then ‑‑

**[\>\>\
]{.underline}**Everyone here.

**[\>\>\
]{.underline}**‑‑ you know, really the health literacy and the IT
literacy item is a population wide issue. And so I would not even
thought about talking about that because it is such a huge thing.
Obviously it is changing and schools, people will be more IT literate.
They will not necessarily be more health literate and the question is
who should do that and where. That\'s certainly, we need a society
that\'s got more health care literacy. Health literacy.

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

**[\>\>\
]{.underline}**That ought to be down here as someone\'s task.

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

**[\>\>\
]{.underline}**And particularly as it impacts on health care disparities
and such.

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

**[\>\>\
]{.underline}**Time to move on to ‑‑

**[\>\>\
]{.underline}**Could I add one more to that just to ‑‑

**[\>\>\
]{.underline}**Do you have a barrier.

**[\>\>\
]{.underline}**No actually an enabler.

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

**[\>\>\
]{.underline}**We danced around it but if you could integrate
eligibility verification with this because we talked about having
somebody insurance information for example.

**[\>\>\
]{.underline}**That was really for.

**[\>\>\
]{.underline}**For the patient. So for example, Steve\'s point how you
‑‑

**[\>\>\
]{.underline}**For coverage.

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

**[\>\>\
]{.underline}**Okay, yes.

**[\>\>\
]{.underline}**Because then technically.

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

**[\>\>\
]{.underline}**20 ‑‑ sort of 34, you run a smart card to give you the
EHR.

**[\>\>\
]{.underline}**Great point.

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

**[\>\>\
]{.underline}**That\'s a great point. Okay.

> All right. So ‑‑ now let\'s take, let\'s take a few minutes just sort
> of talk about this fees of middle state, mid-state. As this happens by
> this time but kind of the stage on the way. And you know, how we would
> ‑‑ we have got a brief description of it. Let\'s see if we want to
> show the wild west. If we want to add anything to the brief
> description that we are Ralph has here in terms of the things that we
> have discussed. So take a minute just read that, read that brief
> description. And then we will go around and see if there are things
> that we think ‑‑ and this does describe the way, you know, this
> mid-state. It is describing a kind of partial move toward the end
> state. You may want to be a little more specific about the particular
> things we think have happened. So for example, if we said there were,
> you know we wanted to have case studies, you might say in the
> mid-state we now have data on. So ‑‑ but we can just \[inaudible\]
> people.

**[\>\>\
]{.underline}**One thing ‑‑

**[\>\>\
]{.underline}**Well now I ‑‑

**[\>\>\
]{.underline}**Uh‑huh. Who is that?

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

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

**[\>\>\
]{.underline}**I, were we going to go, I thought we were going to work
backwards from the barriers and enablers ‑‑ that\'s something Kelly had
talked about and then figure out what the most important ones were and
then at some midpoint where should we be in order to make our end state.

**[\>\>\
]{.underline}**That\'s sort of what we are doing. So we are saying, we
have talked about enablers and barriers and now let\'s describe where we
would be in some mid-state point that would be partway there that would
be feasible, given the enablers and barriers we have talked about. That
‑‑

**[\>\> Larry Bartlett:\
]{.underline}**I just, this is Larry. I just sort of leaned over to Ross
and asked the key question are you good? But I think just given the
time, I think you have to ‑‑ I could follow the story line. You know ‑‑

**[\>\>\
]{.underline}**We have got enough.

**[\>\>\
]{.underline}**It would seem ‑‑

**[\>\>\
]{.underline}**Ross, do you have enough?

**[\>\>\
]{.underline}**I have enough certainly to return a draft. And what I
would like to see, since we don\'t have another meeting between now and
‑‑

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

**[\>\>\
]{.underline}**The first is if we could share drafts electronically and
have people respond to it in a timely fashion incorporate those
responses and then, in preparation for the 31st, have a final document
that we all, give a thumbs up to.

**[\>\>\
]{.underline}**I think it would be good. It is hard to get responses
back by e‑mail. So while we have people actually sitting here and
engaging either on the phone I want to make sure we capture what we can
capture. If there are burning ideas that we don\'t lose the opportunity
because some people may not have time to look at it in the meantime. So
we will just, if there are burning things I think ‑‑

**[\>\>\
]{.underline}**I think we have touched upon it, and the one thing
looking back at the description I think it goes back to what Lorraine
Doo said. And ‑‑ by the way. Is while you talk about the wild west I
wouldn\'t ‑‑ you know, I think we are seeing some movement right now. We
are seeing, with the initial charge of the workgroup medication ‑‑
registration and ‑‑ I know the insurance industry has come together to
look at what are some core functions and developed portability standards
that we intend to put out in the public domain so anyone can use to use
a PHR. So I would hope the mid-step would be not be the wild west but it
is driven off given at the education, the value that you get to a point
that you know where the value and you have a minimum set of
functionalities that ought to be in the PHR versus the Wild West. I
think the wild west is almost right now.

**[\>\>\
]{.underline}**Yes it is now.

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

**[\>\>\
]{.underline}**In a slightly more positive. A little further past mid
maybe.

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

**[\>\>\
]{.underline}**And I\'ll just respond to, what I was thinking in this,
kind of what I described about the, how we are approaching widespread
adoption. And I think about that 2010 time frame. I think a lot, exactly
what you said in terms of the state is true. There will be a lot more
core, functionality capabilities out there. We are talking 3 years from
now. And realistic, 3 or 4 years from now. And that\'s, what will
actually be out there in widespread use will still be a lot of
craziness, in my vision of it, and ‑‑

**[\>\>\
]{.underline}**I guess I\'m not going ‑‑ trying to guess on that.

**[\>\>\
]{.underline}**I\'m not wedded to the language making, but I know that,
I think the core, the core capabilities \[inaudible\] for final vision,
in 2010. But it won\'t be implemented fully.

**[\>\>\
]{.underline}**If you think about, you know, it as something between the
next 4 to 8 years so this could be 2010 to 2014. And I guess I might
encourage us to try to describe the state when some of, some of these
things are in place. So I think, you know, just as an example, you know,
minimum and more advanced capabilities. Some more advanced capability
functional standards have been defined and basic certification is
available. That\'s sort of, I don\'t know when that will happen but it
is a step that\'s clearly a step.

> Getting to having, describing the things that we say are enablers, and
> what happens if they really do happens, I guess maybe is, have a
> description of a state that you could get to if we worked really hard.
> Not just what might happen, or what we project will happen if we just
> let it all flail along but presumably we are going to try to do
> something about it. So we are going to work hard to make it better and
> some of those enablers will actually be put into place and you might
> then have a state that is, I don\'t know, a little further along.

**[\>\>\
]{.underline}**I like where you are going Rose Marie I think that\'s
much helpful than having the description, for example we would not want
to strive for the wild, wild west. I\'m not sure what those kind of ‑‑
offer us.

**[\>\>\
]{.underline}**It is a mid-state to hope for to strive.

**[\>\>\
]{.underline}**Right. So I think when you said basic certification for
PHR, whether that\'s a point or not. That sounds like something concrete
we could shoot for or we could shoot for regulation or legislation that
would protect patient data in PHRs. I mean there are some things that
are enablers to the end vision we need to get to and if we don\'t set a
milestone. But I\'m not sure what\'s here help us go anywhere.

**[\>\>\
]{.underline}**Right. Right. So writing on the board, on a slip chart we
are saying that in the mid-state we want a corset of functionalities and
that\'s going to include probably security and interoperability to, you
know, to some extent. You know, how much we want to get in the detail of
that functionality is another ‑‑ but some of those functionalities will
be there and will have made some suggestions.

**[\>\>\
]{.underline}**You might even be more declarative.

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

**[\>\>\
]{.underline}**We talked about saying all EHRs will have is the came
ability of importing and exporting data to PHR.

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

**[\>\>\
]{.underline}**Put that.

> And you have a basic certification for PHRs. And that\'s another
> point. And then the privacy protection.

**[\>\>\
]{.underline}**Will still be lots of things that you could do to make it
be more perfect.

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

**[\>\>\
]{.underline}**Again, like having it be portable, for example. You know,
which it might not be in the beginning, but it might be more later.

**[\>\>\
]{.underline}**Okay. So I want to understand, when we are defining
mid-state I know there is a sort of date range around that. But we are
still stalking about the middle, somewhere in the middle between now and
2014 data, having health records. And Paul, you said at that point. We
will have the capability of export the PHRs. I mean, I think that
that\'s a great goal, except when I look at the timing and say, today is
almost 2007. We have not, we have done one round of certification for
EHRs, there is not even a standard, an established standard for PHR,
full PHR communication. Beyond, I mean the CCR, CDA content standard is
there but there is no, you can know how to connect with any PHR based on
this.

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

**[\>\>\
]{.underline}**Inoperability specification. Not there yet. So that has
to go through an entire certification process, and then it has to be
adopt bid the EHRs and then it has to be made, brought into the
doctor\'s office who have the PHRs. I don\'t know that that ‑‑

**[\>\>\
]{.underline}**Not necessarily.

**[\>\>\
]{.underline}**‑‑ happen.

**[\>\>\
]{.underline}**Not necessarily. What you might be saying is maybe there
are EHRs in a lot of doctors' offices still but the ones that are there
have the capability to export data. Now maybe we don\'t have all the
standards for all the PHRs and there is not full interoperability but we
have this set of standards that we think is reasonable to get to by
2012.

**[\>\>\
]{.underline}** And that\'s something a little different, that I ‑‑

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

**[\>\>\
]{.underline}**‑‑ that I can see realistically getting there in the next
few years, that there is a, that all certified EHRs have this
capability.

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

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

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

**[\>\>\
]{.underline}**But that\'s it.

**[\>\>\
]{.underline}**But you say ‑‑ right.

**[\>\>\
]{.underline}**Some ‑‑ from that.

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

**[\>\>\
]{.underline}**Yeah. We will ‑‑ make sure the words are, that they are
tight enough around it to limit what we are committing to. And we are
not committing, we are hoping. Helen.

**[\>\>\
]{.underline}**One of the potential mid-state one I think for discussion
would be whether there is something about escape scaleable options for
list ‑‑ medication list or something like that. I\'m not sure exactly
how to state ‑‑ there is probably a scaleable function like and ‑‑ sent
away.

**[\>\>\
]{.underline}**And some things are pretty feasible.

**[\>\>\
]{.underline}**Yes exactly.

**[\>\>\
]{.underline}**Like a medication list. That ought to be.

**[\>\>\
]{.underline}**‑‑ everyone.

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

**[\>\>\
]{.underline}**Or else we are doing something ‑‑

**[\>\>\
]{.underline}**Yeah, absolutely.

**[\>\>\
]{.underline}**And is everyone okay with that kind of incremental
approach. Not having a full blown ‑‑ but say if we have, most markets
across the country there is some kind of network service available or
portal available for a medication list for registration, is that a
desirable mid-state?

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

**[\>\>\
]{.underline}**While building towards ‑‑

**[\>\>\
]{.underline}**Yeah, yeah, yeah.

**[\>\>\
]{.underline}**I like that for all. Begin to examine and ‑‑

**[\>\>\
]{.underline}**The Southern Governors Certification is convening four or
five States trying to ‑‑ building off the Katrina health side and I
think there is a lot of interest in general around the country around
doing this through health information exchanges every year. So there
could be more of that connectivity but it is an incremental solution.

**[\>\>\
]{.underline}**Right. Have more whet their appetite. Create the public
‑‑ for PHRs we hope.

**[\>\>\
]{.underline}**So we now have corset of functionalities. Security,
interoperability. Basic protection of patient data. Basic certification
of core functionality. Scalable. Medication history being right up there
at the top of the list. The other things we would like to ‑‑

**[\>\>\
]{.underline}**I have a question. Kelly, I can\'t remember all the ‑‑
you know, Virginia certification of EHRs will they also be doing
certification of the PHRs.

**[\>\>\
]{.underline}**It is in their business model. So I think we have an
opportunity to, you know, make recommendations over the next couple of
months to sort of say how we think that might look like or what we think
a reasonable approach to that looks like and that will there then form
their activities. But I think in the last, actually for more than six
months they have had it as a part of their future plan.

**[\>\>\
]{.underline}**And we think it makes sense to say that having the same
group certify both ends of this integrated system might not be a bad
idea.

**[\>\>\
]{.underline}**That\'s the question I had. Was there two parts to the
question. Certification. There is the certification of the PHR being
able to talk to a PHR.

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

**[\>\>\
]{.underline}**Certification of PHR to have basic functionality

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

**[\>\>\
]{.underline}**And are we.

**[\>\>\
]{.underline}**And perhaps to be able to talk to the EHR.

**[\>\>\
]{.underline}**Right. Yeah.

**[\>\>\
]{.underline}**Steve voiced an opinion of wanting the market place to,
you know, drive the certification of ‑‑ not have certifications
exclusively of PHRs other than maybe perhaps the, you know, the basic,
security functions or something like that. And I think, as Kelly pointed
out, you know a lot of testimony that, where the vendors were ‑‑

**[\>\>\
]{.underline}**Oh, yes.

**[\>\>\
]{.underline}**And when you think about what consumers need in this,
they need to know that, when somebody says we connect, we connect all
EHRs, we are a leading EHR connectivity PHRs. How do you know that?
Because it said on our Web site or it was certified by the an entity.

**[\>\>\
]{.underline}**I mean the two things we keep saying we think are almost
there, are absolute are that it has to have security and that it has to
be interoperable enough to realize it cannot get data and its useless.
So if you don\'t ‑‑ you have to have that. And they all seem quite
willing to have thatch ‑‑ I mean they want to be interoperable, too. So
you know, it is to their benefit really I suppose to have a stamp of
approval which says ‑‑ Rob?

**[\>\>\
]{.underline}**Let me make a suggestion, that we don\'t use the word
basic when talking about \[inaudible\] privacy.

**[\>\>\
]{.underline}**Protection of patient data take out the word basic.

**[\>\>\
]{.underline}**I would use the word robust.

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

**[\>\>\
]{.underline}**Another barrier is another group or groups coming out
opposed to with a we are trying to do.

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

**[\>\>\
]{.underline}**And that could easily happen. And it could come from
Congress as we all know in about 3 weeks or so there is going to be a
change in the wind here and things could really alter in terms of
support for this type, thing.

**[\>\>\
]{.underline}**Good point.

**[\>\>\
]{.underline}**And as soon as a consumer group feels that privacy is not
at the top of the list.

**[\>\>\
]{.underline}**Yeah, yeah.

**[\>\>\
]{.underline}**All of this could be.

**[\>\>\
]{.underline}**Might take the second basic.

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

**[\>\>\
]{.underline}**The basic goes with functionality. Not with security.

**[\>\>\
]{.underline}**Core functionality.

**[\>\>\
]{.underline}**Like the ‑‑ but there is a minimal set of functionality
that might be certified. But one of those core things, it is not
compromised is the secure that robust security and protection.

**[\>\>\
]{.underline}**Will be a certification robust.

**[\>\>\
]{.underline}**And one.

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

**[\>\>\
]{.underline}**Enablers, might be, and we talked about this months ago
is to get the involvement of the banking world. Find out you know if
they have, their whole, the whole online banking world is very, very
secure. Because they knew that if they had a few breaches, they would
run into all kinds of PR issues. So we need to have that type of
confidence for the end‑user.

**[\>\>\
]{.underline}**Just to follow up and let you all know. We have talked to
\"Into It\" who have wanted to testify about, were wanting to come up
here today initially but we have not teed up for a vendor meeting and
they have experience working with thousands and thousands of financial
institutions across the country because of TurboTax and other financial
applications and they are working ton a module that will be
interoperable with PHRs and I think they have a partnership now with
United Health Group but they have a lot of other partners too, so they
will have a PHR that will offer the administrative futures in addition
to the other functionality. But I think their experience related to
security because of their network is quite interesting and they also
have an enormous amount of consumer research they have done. I think
over a thousand consumers at this point to find out what they really
work and what works for them in the way of functionality. So think we
will learn a lot of from them when they come in November.

**[\>\>\
]{.underline}**There is \[inaudible\] we can share that too.

**[\>\>\
]{.underline}**They are using Formex technology and they are using the
model that we talked about at the beginning which is payer to payer at
this stage and then driving it through a consumer software product. It
would be very interesting to hear what their experience is. Obviously
they lived in the financial world where security is paramount. But just
to build on that, there is a large percentage of TurboTax and Quicken
users that never go online because they are terrified of sharing their
financial data. And it is something for us to think about is there a
series of models where you have somebody who says I don\'t care I\'m
going to go on the Internet and share my health data, and you have got
some percentage of folks that say, I want did all on my PC. I don\'t
want anybody else to have access to it. I don\'t think we need to say
one or the other. I think we can build the type of system that, it is
both to happen I think, all the better.

**[\>\>\
]{.underline}**Okay. So I think we are going to let Ross finish
describing the feasible mid-state when he feels better and he is home
and rested.

**[\>\>\
]{.underline}**Feel better. Energized until ‑‑ \[laughter\]

**[\>\>\
]{.underline}**That was good. And we are going to move, I think, to, so
we are going to move away from this. We will hear more about it. It will
come around and we will see another document before the end of the
month. And we are going to move to discussion of the priority
recommendations to AHIC. Kelly, you want to ‑‑

**[\>\>\
]{.underline}**I want to set some context. As a part of the presentation
of the decision on October 31, the Secretary and to AHIC, they are also
going to be considering priority areas across all of the workforce. And
perhaps even some that are coming in from other stakeholders outside of
the community right now. So considering that.

**[\>\>\
]{.underline}**Essential now, functionality, for example it could be
immunization and x‑rays or the, they have maybe 10 different comparable
permanent EHR similar to what we have been discussing for a PHR. The
same is holding true for chronic care. And then with biosurveillance
they are looking at a different of public health functions like case
reporting or ‑‑ event reporting. So the community is going to be looking
at all these and we want them to be thinking about what\'s really most
essential to prioritize in 2007 in particular. And that will then inform
how we go about trying to guide the work that the Health IT Standards
Panel will be doing and the certification commission and the NHIN
consortia and it also to the extent it is relevant some of the work that
we are doing. So for example with biosurveillance there is a direct
correlation they end up identifying case reporting of diseases as, you
know, one of the top priorities for public health. Then they are likely
going to focus on that in the first several months of 2007 and make
recommendations on that area.

> Now we may not have that direct correlation where we are going to be
> focusing all of our efforts say on online consultation or lab results
> reporting to patients because what we are talking about is really much
> broader but there may be some specific policy issues related to lab
> results going to patients. For example there is some State laws that
> require physicians to interpret lab results and sometimes that takes
> too long and you don\'t have that timely access to your information
> you really want. If it is something really pressing going to impact
> your health. So I think there will be some policy work flow, technical
> issues related to some of the priority areas we discussed but that\'s
> not necessarily, you know, going to be the only thing we discussed as
> we have already got pretty far down the road on many, many issues. But
> we do need to be describing what we are considering to be, in
> particular, our essential now priority areas so the community can look
> at them and compare them and contrast them with all the other priority
> areas coming out of the workgroups and the other processes and say,
> okay, this is what\'s really going to be critical to our agenda in the
> next, say, 18 to 24 months.

**[\>\>\
]{.underline}**So we want to identify.

**[\>\>\
]{.underline}**Yeah I mean ‑‑

**[\>\>\
]{.underline}**It would be helpful to go back to our prioritization tool
and look at our essential now category and make sure that folks are
comfortable with it. But also if time allows, over the next half an hour
or so, if we could be articulating, if we do think there are some you
know, policy considerations, technical or architecture considerations,
work flow issues, business process issues, data elements or standards
issues that are particularly important that we might want to highlight
that sew that would give the community a better since of what they need
to be aware of and it also will help us in the development of you youth
cases down the road.

**[\>\>\
]{.underline}**I have a question about the definitions that we\'ve got
now for the, for these different prioritizations.

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

**[\>\>\
]{.underline}**So what I just heard you say, Kelly, was you want to look
at the ones that we have listed out from our previous exercise. And then
try to highlight certain aspects of them if they are not ‑‑ look at the
administrative features one is the most glaringly screams out, what does
that mean? Everything else is pretty much pretty clear and essential now
‑‑ pretty, that all makes sense.

> But administration mean a lot of different things and with the and
> with Rob mentioning the eligibility checking, for example. I don\'t
> even know if that\'s in that definition. It is?

**[\>\>\
]{.underline}**It is.

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

**[\>\>\
]{.underline}**So that being in it, would we include it that in
essential, would we include that in ‑‑ is everything that\'s in the
administrative category essential now?

**[\>\>\
]{.underline}**So I guess, I would ‑‑ I would vote for that being really
essential because that does, that\'s what helps you when you go and
register at the next place. It does tell you what you know, what you
have in terms of eligibility and if you are able to pull that up versus
not able to pull it up, it may determine a lot of the rest of the
things. You may not be able to, you know, afford those lab results new
if you don\'t have, that describes you from an administrative point of
view. Maybe we included more things in there, but some of the
demographics/administrative stuff has to be there. Doesn\'t it?

**[\>\>\
]{.underline}**Okay. When I look at that, checking on insurance
eligibility and claims I was thinking from a patient view, did my, you
know, did my copay cover it, am I done now? Or do I owe more money? My
communication with my payer.

**[\>\>\
]{.underline}**Or who can I ‑‑

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

**[\>\>\
]{.underline}**Or who am I able to go and see.

**[\>\>\
]{.underline}**And me going to my doctor anthem doing the sell
eligibility check based on my PHR.

**[\>\>\
]{.underline}**Because the reality is now. If I go to my ‑‑ blah blah
blah, the physician says, great, we are going to run it any way. Because
it is old, it is the day it is printed. So I think it is probably fits
into the second category at this point even though it is a wonderful
thing to have, real time eligibility check along with download, download
‑‑

**[\>\>\
]{.underline}**It is old the day it is printed but it is not old the day
its ‑‑ I mean, the day they access it is the day they access it. So
granted many physicians can\'t access it but you print it that day and
you take it in with you, it is still not ‑‑

**[\>\>\
]{.underline}**It is like carrying your card. They are still going to
run it.

**[\>\>\
]{.underline}**But it tells you what things you are eligible for.

**[\>\>\
]{.underline}**My argument is a more real time issue. So it is more
Internet based where you run the card and it gives you all your
demographics but it also sends \[inaudible\] eligibility verification
transaction.

**[\>\>\
]{.underline}**Uh‑huh.

**[\>\>\
]{.underline}**To the Internet.

**[\>\>\
]{.underline}**I see.

**[\>\>\
]{.underline}**So it is a robust multi‑feature type thing but it is not
going to happen.

**[\>\>\
]{.underline}**That\'s not going to happen. Okay.

**[\>\>\
]{.underline}**So that\'s down ‑‑

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

**[\>\>\
]{.underline}**That\'s kind of what I was thinking.

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

**[\>\>\
]{.underline}**I try to ‑‑ it is right but I\'m glad you are saying as a
later because a lot of things that have to be built to get there.

**[\>\>\
]{.underline}**Respond to Kelly\'s priority?

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

**[\>\>\
]{.underline}**So listening to her saying how across all of the
workgroups, what are the key things that have to be dealt with in 2007
in our opinion. A couple that relate to ‑‑

**[\>\>\
]{.underline}**No, no. It is really what\'s crucial for our Workgroup.
The other workgroups are all going to present what\'s key for them. And
we need to decide what\'s, what are our priority recommendations.

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

**[\>\>\
]{.underline}**And then we will, you know, we will see how that he
balance out, come out with the others.

**[\>\>\
]{.underline}**Okay. Sometimes anticipating how they are going to judge
the final list would be helpful. So the two ones that I thought would be
critical to ours that also dovetail with others, one is the, is setting
up the potential to integrate between PHR and EHR. And that has to do
with standards, with certification, and with privacy policies. And then
I was imagining that would certainly dovetail with EHR and chronic
disease management in a privacy workgroup.

**[\>\>\
]{.underline}**And even though we don\'t think that can be done
necessarily, you know, right away, it needs to start right away.

**[\>\>\
]{.underline}**That\'s correct. So we have to start that process. And so
that, starting that process.

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

**[\>\>\
]{.underline}**Would be a high priority initiative for 2007.

**[\>\>\
]{.underline}**Right. I mean I thought one of the things that we talked
about, because we are trying to stick to the, since we have gone through
a couple of rounds of this prioritization process, trying to stick to
the categories we previously described. Maybe in the presentation on
31st data, one of the things that we think is really critical because I
think we hit on this a couple of times is the concept of portability and
interoperability. And that we need to achieve this as fast as possible.

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

**[\>\>\
]{.underline}**And so of that that assures that overarching ‑‑ going
into this but then when we are actually making some specific you know,
presentation on this, the priority areas that we have already talked
about. Like right now, for essential now we have prescription refills,
lab results, list of conditions and allergies and then these
administrative features that we could kind of trail down on, on anything
that\'s necessary, within those. But that, we would say, up front, we
really think portability is the key issue.

**[\>\>\
]{.underline}**Is the ‑‑ let me ask if ‑‑ so if we are making
recommendations to them for, you know, where to put effort and
resources. Some of the items we have here are, they are core
functionalities. We think you ought to have lab data and prescription
refills. But the issue really, I suppose about making that happen is you
have to say, someone has to make a decision that PHRs need to have that.
So there has to be a, the action ‑‑ because a lot of them are going to
have it. But to make them all have it, someone needs to make a decision
that that has to be a part of it.

> So really a decision about certification is the action. And then we
> can tell them what we think we would like them to have as the
> functionality. So one recommendation would be, boy, we need to get to
> work on the interoperability and the standards and we need to start
> that instantly because these other things won\'t happen. And second we
> need to have an issue, we need to have an estimate of certification,
> minimal certification. And we think it needs to include. Would that ‑‑

**[\>\>\
]{.underline}**Well, I think that we will have an opportunity in
December to actually flesh out what we think really needs to happen. And
the only thing we are expected to do in the next two weeks an is really
lay out our vision and articulate to the extent we can, what these
priority areas are. And then sort of how we act on them, or what the
recommendations are within those priority areas around portability or,
you know ‑‑ and ‑‑

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

**[\>\>\
]{.underline}**Yeah. What to review to get there. At this think we can
do that in December, a little more time to decide and get consensus on
as a group where we really want to go. But I do think it would be
helpful if we, at least articulate, you know, what the issues are within
the priority areas so that they can start drafting some new cases.

**[\>\>\
]{.underline}**Justine? Did you ‑‑

**[\>\>\
]{.underline}**Well I guess the other thing since we talked a lot about
this last time is we don\'t want this to be perceived as sending strong
signals to the market that the only thing that\'s really important in
the next year are these four things for PHRs.

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

**[\>\>\
]{.underline}**I mean this is really about prioritizing our, our
\[inaudible\] in many ways and trying to create, essentially what will
become a roadmap for AHIC to follow so we know over the next year or so
we are going to follow so we are going to get incremental progress in
these areas. But we are also saying in these other essential categories
we are not going to be tack believing it all within the next 12 months.
We are being realistic.

**[\>\>\
]{.underline}**I guess the ‑‑ so I think we don\'t want to be too wimpy.
We don\'t want to be asking for tiny things that are kind of, you know,
they are important and they are a‑achieve and yes we could do them right
now. And they are the sort of small pieces but, you know, and maybe it
is December when we ‑‑ I think you are saying this. In the framework of,
you know, there are going to be ‑‑ core functionalities that we think
are going to have to be there for any personal health record. Then lots
of others of people can think about, you know, we think the first couple
are these. You know, more to come later. And boy, we think, you know
interoperability is critical. We will tell you a little bit about what
we think that means and with whom and how and what the potential
barriers are. But, and how we are, how people need to work on that. But
frame the big things and helping the little piece inside between we want
immediately.

**[\>\>\
]{.underline}**So people have been referring to, using the word
interoperability. I want to make sure we don\'t use the concept of
integration. Because most of the features that we talk about that people
like have to truly be integrated. Not just interoperable.

**[\>\>\
]{.underline}**So is integration ‑‑ boy, absolutely. Couldn\'t agree
more.

**[\>\>\
]{.underline}**Just wanted to ‑‑

**[\>\>\
]{.underline}**Is integration a ‑‑ you at least have to have
interoperability.

**[\>\>\
]{.underline}**That\'s correct.

**[\>\>\
]{.underline}**As the minimum. And then hopefully you have integration\
at ‑‑

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

**[\>\>\
]{.underline}**As well.

**[\>\>\
]{.underline}**And so but I just didn\'t want to that word to be lost.

**[\>\>\
]{.underline}**My only comment about what you said, Kelly, if I looked
at the list only, I\'m just nervous that it could get lost but as long
as you package this whole interoperability in a prominent way it won\'t
get lost.

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

**[\>\>\
]{.underline}**And I was going to say I agree. I think we need to focus
on the interoperation, the portability, the standards need to get there.
Big issues. I know from our experience and our plans of what we are
doing when you look at low‑hanging fruit where you can get value it ties
to the bigger picture, I look to prescriptions and I think of it how it
may be inter‑access, maybe with the EHR Workgroup maybe even chronic
care. But if you look at E prescribing. We have standards from the EMMA.
It is a function but it provides immediate benefit to the provider. Our
experience from our plans going out and giving right equipment and
paying sub is descriptions, the providers that are doing this ‑‑

**[\>\>\
]{.underline}**Love it.

**[\>\>\
]{.underline}**They love it. Quality of care, ease. They are preventing
drug interaction. Many of our plans now are waving generic copays so you
are saving the consumer money. So if you think about low‑hanging fruit
you have a technology that\'s out there. You have standards. It ties
into the EHR. It ties in here when you think of prescription refills and
the ease if you can push formularies, it really is a low‑hanging fruit
and if you get providers to buy in and love it and consumers to buy into
the bigger picture of, full EHR adoption. Full PHR adoption soy really
see that as some low‑hanging fruit that really could be a stepping stone
to the larger vision where we got a lot of momentum and the existing
technology and standards needed.

**[\>\> Ross Martin:\
]{.underline}**Great. I have a question then. I\'m sorry, Justine this
is Ross. We have prescription refills here for the PHR. And the EH ‑‑
e-prescribing function is not a function of a PHR.

**[\>\>\
]{.underline}**I\'m just thinking of the way you intersect with other ‑‑
intersect with the EHR Workgroup and what they are doing and I haven\'t
paid much attention to their focus but what a nice way to intersect what
they are doing and we are doing ‑‑

**[\>\>\
]{.underline}**So that means it is another kind, it is a three‑way
communication, through your PHR you are communicating with perhaps the
person who pays for your prescriptions and your physician because he has
to make sure that the right number of refills are there and it can be
done automatically or the physician could start a new prescription but
for many reasons to have it all interact is terrific. I mean everybody
‑‑

**[\>\>\
]{.underline}**There is one thing, I would recommend taking out
administrative features from our small list. And exchanging it for
demographic profiling. Because A, there is no PHR \[inaudible\]
integrate with the appointment scheduling. That is ridiculous. For one
thing that\'s not runoff the EHR. Second ‑‑

**[\>\>\
]{.underline}**Some are.

**[\>\>\
]{.underline}**And the ‑‑

**[\>\>\
]{.underline}**Many of them are.

**[\>\>\
]{.underline}**This HIPAA module.

**[\>\>\
]{.underline}**Okay. Or some of it.

**[\>\>\
]{.underline}**It is done in the VA or something like that.

**[\>\>\
]{.underline}**VA. DOD.

**[\>\>\
]{.underline}**Did a lot of them.

**[\>\>\
]{.underline}**Using ethic. It is integrated.

**[\>\>\
]{.underline}**Another way ‑‑

**[\>\>\
]{.underline}**It is large.

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

**[\>\>\
]{.underline}**Large. I\'m saying it is not accurate.

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

**[\>\>\
]{.underline}**But one think you could do though is talk about
integration as offset with a practice management system. Therefore you
are getting at 100 percent of practices not the 14 percent. Because if
you go in with a PHR, and you tell the practice, you can download by
demographic information and insurance information directly into your
system without having to type it, then the practices say that\'s great I
save money and time.

**[\>\>\
]{.underline}**So I thought you would want administrative features
because it would interact with that module.

**[\>\>\
]{.underline}**But all the other things don\'t apply except demographic.
Essential now.

**[\>\>\
]{.underline}**Not eligibility?

**[\>\>\
]{.underline}**Not now.

**[\>\>\
]{.underline}**That was my other question now, because we didn\'t
include in here what we have already done which is medication history
and registration summary and that\'s ‑‑

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

**[\>\>\
]{.underline}**That\'s, those are those functions so that\'s ‑‑ I mean,
they are essential now because we are already ‑‑ that\'s what we did
last year so I was little confused about bringing up e-prescribing
because we had the new pieces of it that connect with PHRs directly are
refills and what we have already done which is medication history.
Everything else is more function at the provider level which I\'m, work
on E‑Prescribing a long time.

**[\>\>\
]{.underline}**But we are working at medication history at this point so
you or your provider know what medications you are taking. I think the
next step from that could be, and they tie into the EHR Workgroup is
being able to then view a prescription refill request online or ‑‑

**[\>\>\
]{.underline}**And that\'s ‑‑

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

**[\>\>\
]{.underline}**And tying it into what the EHR Workgroup is doing. So it
is more than a medication list. It is actually prescribing. Write that
script on your handheld or whatever or it goes to the pharmacy and the
doctor can say oh I\'ve got all the ‑‑ information because it may run
through ‑‑ subs. So any patient who comes in whether they are blues or
whatever. The formula, I realize this drug is not on your formula, it
will cost you a local more. I could do generic and you won\'t ‑‑

**[\>\>\
]{.underline}**Doesn\'t at that take the eligibility ‑‑

**[\>\>\
]{.underline}**I\'m just, I\'m trying to figure out what\'s on this list
different from what we already have.

**[\>\>\
]{.underline}**I think ‑‑

**[\>\>\
]{.underline}**Robust e-prescribing.

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

**[\>\>\
]{.underline}**Maybe it is integration issue. Trying to integration some
of the ‑‑

**[\>\>\
]{.underline}**Robust integrated e-prescribing.

**[\>\>\
]{.underline}**Because we, we were just talking about consumer access to
medications before. Now we are talking about the request going from the
for a refill, from the consumer.

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

**[\>\>\
]{.underline}**And saying to my doctor I need a refill.

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

**[\>\>\
]{.underline}**It is that communication that would be built into the
next round of youth cases and harmonize. One of our jobs will be
internally to look at the EHR list and look at our consumer empowerment
list and figure out how can we harmonize these to make sure these cases
that are really going to build it get to the next level of inoperability
and functionality for our system at large. So we will be looking, you
know, at the other workgroups to see how they, how these all fit
together.

> And I don\'t think we really did much in our previous year on
> prescription refills, and there even are policy issues outstanding,
> because while there is regulation, e-prescribing standards, there is a
> lot of concerning that they are still not good compliance to the
> standards and we have an issue of people still predominantly faxing.
> So that might be, for example, a policy issue around that we might
> address at some point. Or maybe the EHR worker would be better to
> address that but that is.

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

**[\>\>\
]{.underline}**Process issue, yeah.

**[\>\>\
]{.underline}**Kelly, I\'m ‑‑ the odd man out here, but so you have got
these pieces here. You have got attributes, you have got portability,
interoperability. Integration. If I had to gets, I think people are
trying to figure out, so what\'s the addition, what in addition to this
do you need to bring to the group on the 31st? Is it some, a specific
action step or maybe you could even do a little example?

**[\>\>\
]{.underline}**Yeah, I mean, I think we need an agreement that people
are comfortable with an essential now. I think we just heard is that may
be administrative features shouldn\'t be in essential alt. Even though
we did our ranking. And people thought about this. Now that will we are
in a group we are not necessarily in a consensus.

**[\>\>\
]{.underline}**Well I guess, I ‑‑ so a part of the disagreement so
administrative features, it sounds like to me, and let me see if I can
say this and you will agree. Is that there are systems where those
features could be useful because they interact with other systems that
are there, that are already integrated. They are, okay, big ones.

> They are not there for a lot of other places, those places a lot of
> them don\'t have electronic health records any way so we are not going
> to be able to integrate with them. On the other hand, some of those do
> have practice modules and those administrative features might be able
> pretty soon to interact with those scheduling modules and practices.
> Not yet? No, long time from now, never mind that part.
>
> So they are not going to be able to get to those practices. That
> doesn\'t mean you wouldn\'t want to have them. Because there is a
> substantial chunk of the population that could benefit from them. So
> to say that you would, you wouldn\'t put them in, it is not, it
> doesn\'t seem to me it is that hard to put them in and have them
> available for the places they can be used while you are waiting over
> the course of the next year or two for the other systems to be able to
> deal with them.

**[\>\>\
]{.underline}**Well, I think Kelly\'s point all along is low‑hanging
fruit.

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

**[\>\>\
]{.underline}**I think my mind demographic data which is the low‑hanging
fruit. Everything else is some jewels Byrne down the road but
demographic can be used today. So that ‑‑

**[\>\>\
]{.underline}**Can you put the definition ‑‑ we have.

**[\>\>\
]{.underline}**We have been talking for a year about registration
summary. Are we now saying that\'s not possible.

**[\>\>\
]{.underline}**Oh, no, no, no.

**[\>\>\
]{.underline}**No, no.

**[\>\>\
]{.underline}**We are saying that\'s already done.

**[\>\>\
]{.underline}**Forward looking. So the assumption is on October 31st we
are going to hear from the standards panel and this is what you should
adopt and our breakthrough ideally will be using these standards and
following our recommendations from May and getting their registration
summary and medication history out in a PHR breakthrough. So yes we are
absolutely following through with that. Looking at the ‑‑

**[\>\>\
]{.underline}**Now we are looking for next year.

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

**[\>\>\
]{.underline}**The category of been there done that or whatever we are
already.

**[\>\>\
]{.underline}**Yeah, right.

**[\>\>\
]{.underline}**So ‑‑

\[multiple speakers\]

**[\>\>\
]{.underline}**Now we are looking at what\'s our current priority for
this next round.

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

**[\>\>\
]{.underline}**And I\'m ‑‑ you characterize the administrative features
as taking them out.

**[\>\>\
]{.underline}**No, no.

**[\>\>\
]{.underline}**And I was trying to say.

**[\>\>\
]{.underline}**I was saying we should leave them in.

**[\>\>\
]{.underline}**Let\'s take that category and maybe talk about the ones
we think are essential now. Interoperability, privacy and security
capabilities as administrative functions.

**[\>\>\
]{.underline}**Can we put that slide back up?

**[\>\>\
]{.underline}**The other one ‑‑

**[\>\>\
]{.underline}**Wait a second. We are going to put it back up.

**[\>\>\
]{.underline}**Down the ‑‑ those types of things.

**[\>\>\
]{.underline}**Can I ask a ‑‑ I don\'t understand that about the
scheduling. You are saying that it is not going to be possible to go
online and schedule appointments? Is that what you are ‑‑

**[\>\>\
]{.underline}**If you go online to schedule appointments you go in
through the Web portal of the practice.

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

**[\>\>\
]{.underline}**It is variable.

**[\>\>\
]{.underline}**No, it is variable.

**[\>\>\
]{.underline}**Well it depends.

**[\>\>\
]{.underline}**I have ‑‑ portal PHR.

**[\>\>\
]{.underline}**At the vet I can do this right now. I can go online and
schedule an appointment for my dog.

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

**[\>\>\
]{.underline}**So the patient is ‑‑

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

**[\>\>\
]{.underline}**So with that, in terms of ‑‑ now? I think that\'s a nice
to have and a nice valuable feature. I don\'t ‑‑ and I would like to
make sure we agree is anything we say is essential now is in the view of
what we are going to recommend that AHIC charge this Workgroup with
putting on as a priority and just the general engine of this but it
doesn\'t preclude any private entity or other consortia of people to say
hey we are going to work on that now and get it done and we won\'t wait
for you guys.

**[\>\>\
]{.underline}** I guess that\'s right. But if we give something a
priority, don\'t you think that will push vendors? I mean I would think
‑‑

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

**[\>\>\
]{.underline}**If we say this is really important, and I would think
that that would push both the EHR people to say, they think as priority.
People really want to schedule. Maybe I need to have scheduling modules
or I need to have one, you know, be hooked up.

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

**[\>\>\
]{.underline}**And, you know, so vendors, of PHRs to say, I guess
that\'s, you know, that is a desirable thing. So I mean, we can late
them come up with things or we can push for things.

**[\>\>\
]{.underline}**I think also we need to look at it, too, is not
necessarily sending signals to the marketplace or vendors about this,
about functionality around these things but more we need to create the
engines around these things.

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

**[\>\>\
]{.underline}**We need the underlying policies in place. We need the
architecture the network services in place. We need the standards in
place.

**[\>\>\
]{.underline}**And adopted. And because we cannot do it all at once in
the next year we are saying realistically let\'s take these things
particularly important given what we have heard today.

**[\>\>\
]{.underline}**All right. That\'s an important point. So let\'s go to
the other list.

**[\>\>\
]{.underline}**Reflect what you have just said and give an example of
what is a functionality? Doesn\'t it confuse the client in terms of ‑‑
like you said, I think a lot of industry there is somebody might come
out and they may do something within our way leader or here, there. But
if we define it in terms of what you just said and what we are really
driving at and give an example of what you are talking about that would
help us achieve our goals.

**[\>\>\
]{.underline}**So we need to look at things that are, that we think,
again we either need to start working on the infrastructure for or that
it is possible to work on the infrastructure for. And if we ‑‑ so if we
think about prescription refills, we think that the ‑‑ how much work
needs to be done so you guys ‑‑ how much work needs to be done? Almost
nothing.

**[\>\>\
]{.underline}**It is fruit on the ground.

**[\>\>\
]{.underline}**Fruit on the ground, pick it up.

> How much work needs to be done, to make, to get lab results to come?
> Well there is work that has to be done in State legislatures, that\'s
> going to take a while. But we, so we need to do some work in terms of
> standards.

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

**[\>\>\
]{.underline}**So there is real work for us, real work for the field,
real work for ‑‑ people \[inaudible\].

> Okay. We work on that. Conditions and allergies. There is no work
> there. Only authentication. Authentication and standards I guess.

**[\>\>\
]{.underline}**Yes. Terminology. You know, how we adopt structure
terminology and the.

**[\>\>\
]{.underline}**So there is some work on that.

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

**[\>\>\
]{.underline}**Well, yes, and actually there are no standard for
allergies.

**[\>\>\
]{.underline}**So that\'s.

**[\>\>\
]{.underline}**Big problem.

**[\>\>\
]{.underline}**Not going to be so simple. Some other groups.

> The registration stuff and the eligibility and the scheduling. So say
> let\'s just talk about scheduling. So that, there are some places
> where, if you put that in, it could interact tomorrow. It doesn\'t
> need a policy change. It doesn\'t need an infrastructure change.
> Vendors have to decide it\'s worthwhile. Practices have to decide they
> want to do it. But it is possible now so I would think, if you want to
> put it in the, in our portfolio of functionalities that we think are
> good, it could go in there with actually no work on our part. And some
> work on, you know, on the market ‑‑ part to kind of catch up with
> places that are not doing it. So we don\'t even think about that. But
> we say it is a good thing to have and we would encourage it.

**[\>\>\
]{.underline}**Yeah. I actually think that a lot of the, the real
granular aspects of some of this can be worked out in the drafting of
the youth cases since there are these interdependencies and what with
allow the other workgroups are doing would be a good example and
prescription, the whole process of ordering prescriptions and refills is
very interdependent with EHRs. We will be table to work object how to
fit all those together to create the best youth cases that are draw this
all forward.

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

**[\>\>\
]{.underline}**But at least having you all lay out what you think is
going to be important and valuable to advance our agenda in the next
year, will make it easier for AHIC to figure out how this pieces
together and easier for our job internally how we end up you drafting
something that can bring in secure messaging from chronic care, and
combine it with, you know, online consultation if we decide that\'s
important here. So that, you know, we can make sure that we are
advancing something that will work across the board.

**[\>\>\
]{.underline}**So do you think you have ‑‑ what more do you need, what
more input do you need from us ‑‑

**[\>\>\
]{.underline}**Yes, the only thing I think we need to get agreement on,
is do we think that essential now, category really reflects what should
be considered to be, you know, our priorities for the next year or so.
And I do ‑‑ Paul had some communication with us over the last few weeks
that he thought that, in our first ranking online consultation came up
as number three. But then when we looked at it as essential now, it
dropped 55 percent. So do we want, as a group, to be thinking about
moving that into the essential now category or are the other, any other
elements that we feel warrant short‑term attention.

**[\>\>\
]{.underline}**I would just say, I mean, again thinking of your pet
example reminders are pretty easy and I think if you think about what\'s
most valuable for patients one of the applications they care about
improve health now. Of reminds up. Much of this is on data currently.
You guys do this, lots of folks do. I would bump that up as being one of
the things that you put the killer axe in front of patients and
providers.

**[\>\>\
]{.underline}**I think that in terms of prevents that would be hugely
powerful.

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

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

**[\>\>\
]{.underline}**And get your cholesterol checked again because you have
been on and we are ‑‑

**[\>\>\
]{.underline}**Am I officially also putting the online communication on
there, too?

**[\>\>\
]{.underline}**We are thinking about that.

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

**[\>\>\
]{.underline}**Haven\'t yet.

**[\>\>\
]{.underline}**This goes back to the issue we talked about the last
time, that it is very hard to rank these because, when you look at
those, most of those to me look like essential, that they really should
be. So isn\'t it ‑‑

**[\>\>\
]{.underline}**But some are harder to make ‑‑ some are harder to make
happen because there are policies issues about online consultation and
their incentives and such that.

**[\>\>\
]{.underline}**Well, one of the things we talked about the last time was
adverse reactions which I think everybody kind of thought that that
probably would go under the conditions and allergies, is that right?

**[\>\>\
]{.underline}**Patient ‑‑

**[\>\>\
]{.underline}**Patient ‑‑

**[\>\>\
]{.underline}**Right. Exactly. Okay. And I mean, those, to me, are,
that\'s some really key things. But we have got it in the, you know,
almost not ‑‑

**[\>\>\
]{.underline}**The ones conditions and allergies are already up there
essential now.

**[\>\>\
]{.underline}**But if we are saying adverse reaction goes in the region.

**[\>\>\
]{.underline}**Key defining it.

**[\>\>\
]{.underline}**Of the challenges related to getting all that done.

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

**[\>\>\
]{.underline}**And that\'s, in our discussion last time, that\'s how it
got down, lower than ‑‑

**[\>\>\
]{.underline}**But are we ‑‑ so we are basing these on what we think can
get done rather than what we really feel ‑‑

**[\>\>\
]{.underline}**From an issue.

**[\>\>\
]{.underline}**Are a priority.

**[\>\>\
]{.underline}**And it is not so much what we think can get done but what
steps need to be done before you could get there. So the adverse
reaction, if it is a patient outcome, defining patient outcomes and the
language and the data standards has a lot of work that has to be done
before we could say, you need to do this and they would say, well what
language do you want us to use? And we would say I don\'t know yet. So
we are stuck in moving that one up. If it is a allergic reaction we have
a place for that because we have some better ‑‑

**[\>\>\
]{.underline}**I would ‑‑ based on that previous testimony of Dr. Tang.
Remind us about, the order of the list being what they want, not
necessarily what we think they need. Right? So that some of those items
are things that we would like them to have.

**[\>\>\
]{.underline}**It is like we are really talking about two different
things. Maybe there is two different lists and one is what you are
talking about, what we think consumers want now. Leader in the future.
And other list is what\'s on the back end of those, you have to do to
get them done and what is the thing we can do that will enable most of
it to happen and when does that fall on the time ‑‑

**[\>\>\
]{.underline}**Does the ‑‑ it is a great point. I might argue that if
there are things we think they need, because we are all very smart and
we know a lot of stuff. And we take a public health look. Then our best
guess if we give them some of the things they need like reminders that
in fact we will make them healthier and that will make them want this
more. Now, that\'s kind of a long‑term thing. But you don\'t begin to
get the benefit until you start it. And so I guess you know that\'s a
sort of a hidden benefit.

**[\>\>\
]{.underline}**I would also take the opposite view, and say at that if
we give them some of what they really want, then ‑‑

**[\>\>\
]{.underline}**Oh, yes.

**[\>\>\
]{.underline}**Opportunity ‑‑

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

**[\>\>\
]{.underline}**I think we should give them all the things they want. I
mean what they want they should have right away because then they will
be ‑‑ and they will want it and then we can add in few things they need
maybe.

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

**[\>\>\
]{.underline}**Maybe we should just say basically the low‑hanging fruit
is here is what can be done right now. And then here is what can be done
next year.

**[\>\>\
]{.underline}**A little more work.

**[\>\>\
]{.underline}**Rather than saying, essential now because that\'s,
indicates stuff.

**[\>\>\
]{.underline}**Different terminology.

**[\>\>\
]{.underline}**Listen to these things.

**[\>\>\
]{.underline}**So near term priorities.

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

**[\>\>\
]{.underline}**This is what we think could make a difference because it
is more ready to go.

**[\>\>\
]{.underline}**Right. I think it that might be better.

**[\>\>\
]{.underline}** And these are essential, we feel will take more
structure development than development.

**[\>\>\
]{.underline}**That\'s a good idea.

**[\>\>\
]{.underline}**Let me ‑‑ online consultation that should not be in that
first group because as you said yourself there is a number of
policy \[inaudible\] compensation, two is liability. If there is a
consultation, across State lines, there is all kinds of issues there.
That\'s one that we should not really touch at this point. And then
there is security issues. Have to be equipped. This is not a low‑hanging
fruit at all.

**[\>\>\
]{.underline}**Can I ask ‑‑

**[\>\>\
]{.underline}**Couldn\'t tell about the ones we could do right now?

**[\>\>\
]{.underline}**Yes I mean if we are talking about our top category there
with the addition of reminders, then ‑‑ and just drawing from a
conversation we have, we could put together a presentation of the 31st.

**[\>\>\
]{.underline}**Could I ask a clarify questioning ‑‑ so Ross, about
online consultation, it is a good problem for thinking about some of the
others. So you know, the issues of compensation for it, I think will be
solved by a marketplace. Issues of liability, I guess will be solved
sometimes by case law, sometimes dish mean probably by case law. It will
be, or maybe by policies ‑‑ we are, you know, and you might say, well we
ought to advocate for X. We are not an advocating group. I mean, members
of us might be but we are not. That\'s not what we are as a working
group. So if there are things that can only be solved those ways, you
hate to sort of leave those all off the list just because we don\'t have
a mechanism to solve them. If there are other people who may solve them,
and we think there are high value. So I guess, this is a good one to
think about there. Because we think this might have high value. There
are a lot of things that are needed which we won\'t have any control
over probably. Many of them.

**[\>\>\
]{.underline}**Yes. This is also another one that, was addressed
extensively over by the Chronic Care Workgroup. And after a lot of
deliberation and testimony, they pretty much came down to this issue of
a lack of, the appropriate payments and sum, and it is really because
there is a lack of evidence right now. What is the real return on
investment. How does this really impact work flow and patient care and
valuable information, or exchange between the clinician and the
provider. And I think while just teen and others have been able to
communicate what\'s been learned to date and there are promising
programs out there some innovators payers and vendors in this space. We
need to be sympathizing out there that Helen are working on. And doing
demonstrations of that CMS. We will be able to determine if there is
enough evidence to make a coverage ‑‑

**[\>\>\
]{.underline}**Good point.

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

**[\>\>\
]{.underline}**And that will be the sort of ‑‑ so there is ‑‑

**[\>\>\
]{.underline}**Can be done.

**[\>\>\
]{.underline}**Have a big part of this but payment policy both in the
private and public sector will be a big factor. But evidence of
development preceding that even more important in the near‑term.

**[\>\>\
]{.underline}**Okay. Then I\'m fine where it is.

**[\>\>\
]{.underline}**One clarification about whatever we are calling
categories, they are, the first ones are sort of low‑hanging fruit. Some
of them are low‑hanging fruit. None of them are ones that we said, and
I\'m thinking about the administrative features in tick, about
portability, and interoperability and privacy and security that we
necessarily these are not low‑hanging fruit. They have to be in place.
We have to it be able to priority.

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

**[\>\>\
]{.underline}**They have to be worked on.

**[\>\>\
]{.underline}**You know, if we cannot get it to be portable. Then it is
really not patient empowering. It is not consumer empowering. If it
doesn\'t have full on privacy and security ‑‑ on it, I know it is being
worked on.

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

**[\>\>\
]{.underline}**As a group, but those have to have a priority.

**[\>\>\
]{.underline}**So we are going to say those in the beginning, in the
frame it up. So we are going to talk about the things that are
absolutely critical and urgent to be started, but are not likely to come
about in the short‑term and then we are going to talk about the
short‑term priorities so the others are our short‑term priorities to
start. These are short‑term priorities to finish. Right?

**[\>\>\
]{.underline}**Can you draft that out for us Kelly?

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

**[\>\>\
]{.underline}**Because I think that would be very helpful.

**[\>\>\
]{.underline}**Do we have any public comment people?

**[\>\>\
]{.underline}**Well we have not opened it up yet could you want to go
ahead and do that.

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

**[\>\>\
]{.underline}**We should do that.

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

**[\>\>\
]{.underline}**Go ahead.

**[\>\>\
]{.underline}**This next overall ranking for business models I\'m very
concerned about that. This is not something we are sending forward, is
it?

**[\>\>\
]{.underline}**If we are not comfortable with it we don\'t have to
include that in the ‑‑

**[\>\>\
]{.underline}**The reason is, because we have ‑‑ I think we have all
kind of talked about this tethered and I think somebody mentioned
integrated was a better word and I think that\'s probably right but I\'m
also very concerned that point we rank ‑‑ number 2 ensure but yet when
you look over here that he have here in the book ensure is at the bottom
of the list so I\'m very concerned about that so I\'m hoping we are not
sending this forward.

**[\>\>\
]{.underline}**I think we were a little uncomfortable about our ranking.
I mean, I ‑‑

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

**[\>\>\
]{.underline}**It seems to me there was some general concern about
moving that forward.

**[\>\>\
]{.underline}** I mean if what we are really trying to strive for is
this model down the road that\'s going to be PHR that\'s portable and
can, one that you can share data, as you wish, with whoever you are
getting care from. And if that\'s ultimately going to be the integrated
PHR, then so be it but we don\'t need to really worry how we categorize
that at this point.

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

**[\>\>\
]{.underline}**It is pore important we state what really needs to
happen. I think our initial concept here was it might be particularly
helpful to articulate not necessarily the ideal architecture or data
flow, at this point in time. Because it is still a moving target. But
that we wanted to at least give some context for youth case that might
guide some of the work. But that\'s okay. I think ‑‑ what we will have
is a sort of preamble or touch on what\'s most important to us where we
do have agreement.

**[\>\>\
]{.underline}**Okay. So I think we probably should move on and let and
see if there is anyone there for public comment.

**[\>\>\
]{.underline}**Regarding the public comment I know we have got some
members of the public called in. If there is listening in already on the
phone all you need to do is press star one and that will put you into
the comment queue and then alternatively we have for those members of
the public following along online, slide up with information that has a
call in number and then instructions about pressing star one once you
are in. And it looks like we are got somebody in the queue operator can
you open Theresa Dodd\'s line.

**[\>\>\
]{.underline}**We would invite you to comment and comments are limited
to three minutes.

**[\>\>\
]{.underline}**Go ahead Teresa.

**[\>\>\
]{.underline}**What I\'m wanted to do is I\'m listening through your
tablet to rank the functional categories. A lot of what these can be
used for is not just enabling information in the PHR but it is also
changing the culture to get the patient to begin to use the Internet for
communication. So I think when you are looking at the administrative
features and some of these other features they are low‑hanging fruit
because to be able to request a refill or look at educational
information ‑‑ that can be done right now through portal applications
and very simple transactions that can be role based and identified with
elements. I mean, this is not difficult.

**[\>\>\
]{.underline}**That\'s a great point. And that would fit with comments
made by some of the Workgroup's members. Thank you for your input.

> Other comments from the public?

**[\>\>\
]{.underline}**We don\'t have any in the queue right now.

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

> All right.

**[\>\>\
]{.underline}**There is someone here in the room.

**[\>\>\
]{.underline}**Oh, we have someone in the room. All right.

**[\>\>\
]{.underline}**Oh we have two in the room. Okay. Come up to a microphone
so others can hear you.

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

Introduce myself is Jennifer Wolf with University of Maryland, Center
for ‑‑ working with Ross and Pfizer, provider various PHRs first of all
thank you for an opportunity to ‑‑ and participate in whatever way
possible. Enjoyed the conversations, a lot of real energizing thoughts a
lot of great comments and thoughts today. I just want to offer a couple
of maybe thoughts for people to consider, is search really enabling and
the barrier conversation. One of the things that, as we look at kind of
reminding keep in mind we are looking at what\'s out there currently.
There is a lot of technology and innovation going on currently related
to things that can interface with PHRs and EHRs. For example cell phones
that can also, that have personal health applications, to manage weight
and ‑‑ there is glucometers, and can upload information so there is a
lot of things going on right now outside of just the health care
industry, as I\'m sure you are all aware. So I just wanted to kind of
remind everyone to keep that in mind. Keep that in mind. Telecom, mobile
devices and things like that. The conversation was interesting physician
education but along with that one of the things research is showing is a
lot of physicians are really want to implement EHRs and PHRs but cost is
a barrier. There\'s States now legislating both funds, tax incentives
lot of things and making sure physicians are aware of those as they are
being educated about PHRs.

**[\>\>\
]{.underline}**Great point.

**[\>\>\
]{.underline}**Just want to leave those thoughts with everyone. Thank
you very much.

**[\>\>\
]{.underline}**Thank you.

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

**[\>\>\
]{.underline}**Come and take a seat.

**[\>\> Ruth Perreault:\
]{.underline}**Hi, good afternoon, I\'m Ruth Perreault ‑‑ education
for ‑‑ see some familiar faces around the table and I suspect you have
had this conversation. I\'m just in the position of reinforcing it. And
that is the whole issue of education outreach. I noted that it was not
considered essential now but you do talk about the importance of
education. And as you know there are communities that have been left out
of the HIT revolution up to this point for a variety of reasons and in
some cases it is the digital device or an issue of trust, other cases
just an issue of not being informed. And we represent an organization
that is very committed to reaching out to those communities and making
sure they are not left behind. So when we talk about educating, please
understand that it is very important it is the goal, not adoption by,
what is it now, 2014? Is to be reached, there are communities for which
a special outreach effort has to be made. They have concerns about cost.
They have concerns about cultural confidence and concerns about
linguistic confidence and all those issues have to be addressed and
there are a number of organizations like my own that are ready to assist
you in that regard.

**[\>\>\
]{.underline}**Can we ask you how you work on IT. And what is it a
matter of, I assume it would be everything from IT literacy to perhaps
health literacy to general, to more general interests and access to IT
and ‑‑

**[\>\>\
]{.underline}**Well, in our community, I think it is really important to
make the connection between eliminating health ‑‑ and identifying this
as a tool that can be a very, much efficient and useful in that regard.

> I think you also have to be very aware of the concerns about privacy.
> Communities have always had positive interaction with the health care
> industry. The Tuskegee experiment lingers in many communities, that
> has to be addressed. But there is a way of doing it, saying this is a
> tool. That message has gotten across. This is a way in which they can
> be addressed and hopefully eliminated by empowering us to take charge
> of our health.

**[\>\>\
]{.underline}**But then, what, in terms of access ‑‑ so you know, we
talked about, you know a lot of ways of providing access.

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

**[\>\>\
]{.underline}**We talk about computers in schools, computers in kiosks,
in libraries. You know, more ‑‑ and then other communications devices as
we, you know we are just hearing about that ‑‑ so the communication is
going to be a very different thing.

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

**[\>\>\
]{.underline}**Changing nearly daily.

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

**[\>\>\
]{.underline}**So in terms of access specifically, what do you do?

**[\>\>\
]{.underline}**Well, what we are proposing to do, because we are moving
into this arena, essentially at the policy level. We are addressing you
and others to see that there are policies that are conducive to the
outreach effort. But we certainly are aware that in some communities
mobile phones are a wonderful vehicle that can reach people. Everyone
has a mobile phone. There\'s a level of confidence with a mobile phone
even if they don\'t have a computer in their phones. They are most
likely going to have a mobile phone. We believe their PHR applications
that are appropriate for mobile phones that can be used and in fact we
are a part of a consortium that has just proposed that for with ‑‑
Johnson. So we think that there are all kinds of, build on what\'s
there. You know, what do people now use.

**[\>\>\
]{.underline}**And what sorts of ‑‑ what sorts of policy, what would
your public policy agenda be that would move this forward?

**[\>\>\
]{.underline}**There have been some recommendations, I believe it is in
the house legislation now, for grants to communities that are
underserved. We certainly would like to see more resources put in that
direction. And we would with like to see the concept of underserved,
detailed. I mean, there are underserved communities by poverty, there
are underserved communities by race and ethnicity and we would like to
see commitments on the Federal level to really make that happen. Frankly
we would love to see a parallel workgroup along with this one, that
addresses the issue of reaching out to underserved populations.

> It may be a little late for that but hopefully there could still be an
> effort to really bring some thinkers together and we know a number of
> them, who can give some advice and counsel on how to reach those
> populations, what is the most effective means what are the tools that
> can be used to ensure that they get involved in this. And are not left
> behind.

**[\>\>\
]{.underline}**Yes, you know, I think your point that it may be latest
is probably true. But if this is consumer empowerment.

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

**[\>\>\
]{.underline}**That\'s all consumers.

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

**[\>\>\
]{.underline}** And we take that very seriously.

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

**[\>\>\
]{.underline}**So information that would help in our, you know, finding
ways to deal with those issues, we very much would like to have that.
And so we are.

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

**[\>\>\
]{.underline}**We are eager for the input of people who can specifics,
who can ‑‑ I mean, we have had some testimony, but.

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

**[\>\>\
]{.underline}**But we are eager for more information and so consider us,
you know, open armed in terms of.

**[\>\>\
]{.underline}**Very good.

**[\>\>\
]{.underline}**Wanting information.

**[\>\>\
]{.underline}**We certainly accept that information. And every vehicle
we can, when you try to come together we will try to make sure we are
here and others are here as well. Thank you very much.

**[\>\>\
]{.underline}**Thank you.

**[\>\>\
]{.underline}**Yes, thank you.

**[\>\>\
]{.underline}**Okay. I think ‑‑ anyone else on the phone in terms of
public comment.

**[\>\>\
]{.underline}**No.

**[\>\>\
]{.underline}**No, okay very good. So action items from today, Kelly,
between you and Ross.

**[\>\>\
]{.underline}**Yeah. \[laughter\]

**[\>\>\
]{.underline}**So ‑‑ Ross was cured.

**[\>\> Ross Martin:\
]{.underline}**Recovered.

**[\>\>\
]{.underline}**He is going to redraft, is going to give us another
version.

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

I have a question for you about that.

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

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

Because I know for other things we need to have stuff done by the 20th.

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

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

Is this one of those things?

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

Judy has left the room. She has got the timeline done. Yes we do, we
ultimately want to ‑‑ we are unique. We are going to be a little bit
more ‑‑ over the next week ‑‑ oh, great. We probably want to get
something back out to the group as soon as we can.

> And ultimately have the final presentation ready on the ‑‑ we need to
> have ‑‑ yeah. Probably, I mean it would be ideal to have our
> presentation finalized by the end of the 20th. But we are probably not
> going to send things out until the 24th. But in terms of describing
> the priority areas we are going to be sending some communications out
> early so we are get the ‑‑ to weigh in on it in advance of the 31st.
> So that\'s the one immediate to do, to have is some agreement on how
> we want to present those in a way that reflects our conversation
> today.
>
> So we can work on that piece and get that back out to you, hopefully
> within the next day or so. And then we will have roughly a week or so
> to iterate on the presentation.

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

I\'m thinking for my own personal to do list. This is the kind of thing
that the sooner I start working on trying to summarize everything I
typed out while we were talking, the sooner I do that the better off
I\'ll be. I\'ll try to do it tonight. And that way, I would ‑‑ I\'m
saying it in public only because I want the shame ‑‑ \[laughter\] So
I\'ll try to get something to the staff that they can distribute to the
group for, and I would just ask that you really reflect on it quickly
and get back any, you know, major foibles that I\'ve manage to miss.

**[\>\>\
]{.underline}**That sounds great. And we will work on the next few days
on translating the words into actual presentation too so we don\'t lose
the content but we also -- the Secretary in particular is a very visual
person and to the extent we can graph some of it, it will be very
illustrative.

**[\>\>\
]{.underline}**Probably like the picture of the wheel.

**[\>\>\
]{.underline}**Yes. Exactly.

**[\>\>\
]{.underline}**The next day \[inaudible\] \[laughter\]

**[\>\>\
]{.underline}**I thought that might be \[inaudible\] you are actually ‑‑
so much to talk about.

**[\>\>\
]{.underline}**Wouldn\'t that be funny. \[laughter\]

**[\>\>\
]{.underline}**Give that some careful thought. \[laughter\]

**[\>\>\
]{.underline}**So speaking of meeting, our next scheduled meeting is 1
to 5 on November 6.

**[\>\>\
]{.underline}**That\'s right.

**[\>\>\
]{.underline}**And that\'s a phone meeting.

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

Yeah. As well as the November 28 meeting. And you know, if ‑‑ I think
you and Nancy need to make this determination but we have heard so from
some of the workgroup members that we are ready to craft some
recommendations. Maybe not a complete set but we have some ripe in our
minds from what we talked about today and what we have heard over the
last several months. So November could be our month for doing that.

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

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

**[\>\>\
]{.underline}**I think that would be good.

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

**[\>\>\
]{.underline}**On the 28th from 11 to 3.

**[\>\>\
]{.underline}**11 to 3.

**[\>\> Rose Marie Robertson:]{.underline}**

Very good. All right. Any other items for the good of the group? Then I
think we should adjourn.

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

**[\>\>\
]{.underline}**Thanks very much.

**[\>\>\
]{.underline}**Thank you.

**[\>\> Rose Marie Robertson:\
]{.underline}**And only a little late. But this is very important so all
that discussion was good. Thank you on the phone.