American Health Information Community

Consumer Empowerment Workgroup Meeting

September 7, 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.*

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

Co‑chairs, you can begin.

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

This is Rose Marie Robertson with the American Heart Association, and
joining me is Gail McGrath, sitting in for Nancy Davenport Ennis.

We would like to welcome you to this call for the Consumer Empowerment
Work Group of AHIC. We\'re booked from 9 to 11 today. And we have
several important issues to deal with and we need to be preparing for
our September 18th work group meeting as well.

We\'ll start with a roll call of participants. Kathleen, you haven\'t
done that already yet?

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

Not yet. I\'d like to call the roll, if that\'s all right with you.

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

That would be great.

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

In addition to Gail McGrath and Rose Marie Robertson, I\'m going to call
out names. Helen Burstin.

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

Susan Christensen for Helen.

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

Jodi Daniels. Lorraine Doo.

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

Present.

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

Kevin Hutchinson. Rob Kolodner.

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

This is Teresa Hancock filling in for Dr. Kolodner.

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

And Kim Nosia as well.

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

David Lansky.

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

I\'m here.

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

JP Little. Ross Martin. Susan McAndrew. Davette Murray.

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

Present.

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

Nancy Nielsen.

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

Here.

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

Lynne Rosenthal? Charlie Safran.

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

Scott Serota.

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

Justine Handelman on for Scott Serota.

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

Steve Shihadeh. Linda Springer

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

Mike Kosinski from OPM.

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

Paul Tang. Bob Tennant.

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

Here.

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

And Myrl Weinberg.

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

I\'m here.

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

Thank you.

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

And Kat Mahan for Kevin Hutchinson for SureScripts.

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

And JP Little from (inaudible).

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

Thank you.

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

Would you like me to go ahead and get some brief updates from ONC? Gail
or Rose Marie, can you hear us?

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

She must have had to drop off.

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

Kelly, I\'m here. I just wanted to make sure, see if anyone was having
any difficulty with the webcast or if all were able to be connected, if
they\'re near a computer. No difficulty there?

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

Hopefully not.

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

Kelly, let\'s have you go ahead with some updates from the Office of
National Coordinator.

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

I want everyone to know that we have signed a contract to have an
environmental scan on the personal health record market, and this will
be in support of our work group process. We have five tasks that this
contractor will be focused on. One will be an overall environmental scan
that will focus on functionality, confidentiality and security, and
market trends looking at market size and segments by type of service
that\'s offered, and doing a certain level of analysis within each of
these areas. And then task two will be to ascertain marketing practices,
how people are reaching out and marketing their services, what kind of
strategic partnerships are in place, and what personal health record
providers are doing to engage consumers. Third task is interconnectivity
scan, we\'ll be evaluating and categorizing the different models of data
exchange, and we\'ll be looking at a variety of interoperability issues.
Task four is on data mobility. Focused more from PHRs to PHRs, and
looking at both policy and technology issues related to data mobility.
And the fifth will be consumer attitudes and perceptions, evaluating
them and doing some focus groups that you all will be invited to view
and not participate in but to at least be there firsthand and listen to
what consumers have to say. I think it\'s an opportunity, also, to test
some of the messages that the National Health Council and University of
Maryland and others have looked at previously and their own research
efforts to understand how we might best craft and develop a balanced
method that includes both risks and benefits to fully inform consumers
and also to understand a little bit more about what specific messages
might resonate from those. So that work is getting started now. And
we\'ll report back to you on progress. But they will be giving a series
of testimonies on the results. Again, in support of our deliberations
and to help us develop recommendations that are more fully informed.

Does anyone have any questions about this work?

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

Just two questions if I can, are you able to say who the contractor is,
number one. And then number two, you said there would be periodic
updates but is there a time line for when this would all be completed?

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

Could you identify yourself before speaking.

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

Justine Handelman.

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

The contractor is Altarum and they do have a detailed project planned
their first update to the work group is tentatively planned for our
October meeting. We will have a much more thorough testimony I think on
November 6th is our November meeting. So the results from the first
phase of the environmental scan will be presented completely on the
November 6 meeting. And then by the end of the year they\'ll have
completed all of the tasks, at least as they\'ve described in their sort
of phase 1 of work. So I think we\'ll have a lot more information to go
on over the next three months.

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

Could you say the name of the contractor again?

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

Altarum, A‑l‑t‑a‑r‑u‑m.

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

Are there any questions about the content of the scan or issues that
anyone in the work group feels we need to make sure are covered as we go
ahead with this?

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

I\'d like to ask if it\'s possible that whatever critical moment staff
thinks are appropriate we have a chance to review some of the
instruments they\'re using so that we can, some of us who work in this
field we can add some comments or make sure that the issues we\'re
concerned about are addressed.

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

I think that\'s a good idea. This is certainly not survey research but
certainly we\'ll have an opportunity to make sure we\'re soliciting for
input that is in line with the most, you know, current thinking of
what\'s happening or what\'s important in the market. So, yeah, we\'d be
happy to engage you or others in that.

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

I just agree with David and certainly when you get to focus groups there
will be some outline of questions to be probed and we at the National
Health Council would also like to see those materials.

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

In fact, Myrl we were hoping to work with you on that specifically
getting some input from you on that, the test messages.

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

That would be great.

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

We were also hoping to follow up with the woman who testified at the
July meeting who has done a lot of research in this area. Dr. Rita
Agarwal.

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

From the University of Maryland. And we actually talked to Mark
(inaudible) about that.

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

This is Susan Christensen. Maybe at some time Judy and Lynne will agree
with me when you talk about the policy and technical issues to have a
conversation about privacy and security how that interfaces.

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

Yeah, we\'re going to be soliciting for input on specific
confidentiality and security issues. So I think both from a data
mobility perspective and looking at the PHR to PHR issues, but also
specifically on authentication and patient control and security and
encryption and whatnot, those issues will definitely want to get the
current thinking from the confidential privacy and security workgroup,
because this will feed into their work as well.

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

I\'m thinking there might be a way to leverage some of the stuff going
on at the state level in terms of what Altarum is doing in terms of
accessing stakeholder groups.

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

That would be great.

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

Very good. Kelly how about the AHIC prioritization and our work group.

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

This is a prelude to our discussion on the ranking exercise that we all
asked you to do but essentially what we\'re trying to accomplish over
the next two months across all of the work groups and at the full
committee, AHIC, is to systematically look at all the different areas
that we could be focusing on, with electronic health records, personal
health records that is a matter of functional categories or controlling
these applications. Similar to how we started off with our specific
charge this year. And a registration summary. We\'re now trying to
figure out what should the priorities be for 2007, and this will be
considered by the American Health Information Community on October 31st.
But we wanted to get recommendations from each of the work groups on
what those priority areas should be, after a careful consideration about
what are the priority areas, how should we be evaluating them and
ranking them, you know, in the context of our broad charges. And then at
the AHIC level they can look across all the work groups and maybe
consider some additional input from federal agencies that may have
priorities that are not covered by the work groups. And try to get a
good feel for the landscape that we\'ve now sort of created for the
AHIC, overall agenda. And then make some recommendations to the
secretary on what those set of priority areas should be for 2007. And
this is intended to help guide our own work group process, but also it
will help ONC to work with the health IT standards panel, the
certification commission for health IT, and the nationwide health
information network consortia in developing use cases for 2007.

So we hope that the output of our stuff today and as we talk about it in
September, September 18th, we\'ll have a more clear understanding of
what we think the order of the priorities are for personal health
records that will help then establish some of the infrastructure, the
standards that are named, the interoperability requirements that are
developed and recognized and certification. And then the infrastructure
that\'s being built through the NHIN and prototypes will all be intended
to enable the functional areas that we identify.

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

Can you expand a little on one, if there are areas that we think are
clearly critically important or things that should be prioritized first,
then you know we pass those recommendations on. There might be some
issues as I understand it that could be worked on or might be important
later but wouldn\'t be critical at the very beginning. And issues like
that could be worked on over a more prolonged period of time. But can
you give us a sense of what that sort of period of time would be?

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

That\'s a great question and probably hard to give a definitive answer.
But if there\'s an area, for example, that has yet to have a lot of
standardization, perhaps educational materials. We still don\'t have a
lot of standards on the content of the presentation of a lot of
science‑based health information, for example. Then that may be an area
that we need to do a lot more standards development in, and we need
perhaps a longer phase where maybe some of the federal agencies with
some outside partners could be thinking about how to start to develop
standards in that area. So then if in fact it was necessary for that to
then be recognized through our other processes, standards harmonization
process and the certification process that could eventually feed in once
the standards were developed and adopted. Perhaps that\'s not the best
example. Because it\'s likely that standards related to the presentation
of health information may not in fact go through or be relevant to the
certification process, but I just sort of threw it out there as
something that may be an area that hasn\'t had that much attention in
terms of standards.

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

Kelly, can I add to that as well?

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

Sure.

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

Rose Marie, in answer to your questions, and I think these things are
going to make a nice convergence. As you know the HL 7 PHR work group is
developing, will be developing standards to recommend for the core
functionality of personal health records. And many of the things that
we\'re working on in tandem will be developed also. For example, it
talks about the functionality we\'ll have to be interoperable. But it
doesn\'t specify the standards that we\'ll use for that
interoperability, because this is just based on the functionality. And
what I should find out from that work group chair is when the draft of
this set that we\'ve been working on for a long time would be able to be
shared. And I think Dave Landski had been active on that before and had
some organizational (audio difficulties).

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

Lorraine, we\'re losing you.

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

I\'ll find out about that. There\'s some standards on functionality, and
what we heard yesterday is that yesterday the CHIT certification folks
are now getting more interested in some minimum standards as we heard in
our testimony people are not ready to have PHR certified yet because we
don\'t have standards but there\'s interest in working on developing a
beginner\'s set if you will, probably based upon a lot of work that
comes out of this group. So some of that input is going to be pretty
critical now as these standards organizations begin to put the final
touches on these pieces.

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

The prioritization process seems to me to be an iterative process we\'ve
talked about how we\'ve ranked things and our rational. We\'ll have
information from focus groups and our environmental scan. So this is
will indeed be iterative but the iteration is important because it
allows us to bring issues to the forefront that we can then pay
attention to in each of the next settings.

Any other comments on that process?

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

I wanted to make a comment about the, I don\'t know if it comes up in
our next agenda item, but the functional prioritization that Lorraine
was just talking about.

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

That will actually be our next.

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

Want me to wait for the next item?

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

If it\'s a process issue.

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

It\'s a process issue.

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

Bring it up now.

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

We discussed in the spring. I know some of us had concerns about this as
a focal point for our work. I think we need to define some contextual
language around it or be cautious in my view of what we are publicly
stating or recommending to the AHIC for public communication. And my
fear is that I think we all want to have a dynamic marketplace of PHR
developers, adopters, promoters and so on. And I think there\'s a risk
we will send a signal by prioritizing functions to the PHR marketplace
and potentially because of the executive order and other things federal
agencies may feel obligated to give weight to the priorities that we and
perhaps the AHIC itself identify, which would send a signal to the
market and perhaps even a directive to the federal agencies that would
be premature, and maybe even misdirected in the sense of the pluralism
that the marketplace might need. For example, we pick whatever as number
one in the survey, prescription refills, there may be some very valuable
products that don\'t have prescription refill capabilities that we
shouldn\'t discourage or send a signal of discouragement to or that we
shouldn\'t give a signal that the federal agencies should give any
particular weight to products which favor that over another function.
That\'s my view. And so I would hope that we would really emphasize sort
of primary interoperability kinds of functions which enable architecture
and data portability and application development and so on, but not give
signals about the particular applications themselves. In any case I know
that may be a minority view but I think we need a discussion in the
committee about how we communicate whatever it is we collectively
conclude we want to communicate.

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

That\'s a very important point. And we should, in fact, talk about that
as we talk about the rankings in a moment. And to some extent, of
course, we have framed the rankings we\'ve done now in terms of what
emphasis on certain functionality would produce. From the point of view
of enhancing adoption, encouraging sustainable business models,
improving communications, and language, and one would rank them rather
differently, I think, depending on, you know, which of those you were
focusing on primarily. So as the language around that is quite
important, and certainly we don\'t want to stymie this market before
it\'s even begun.

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

I want to echo David\'s comments and what I just heard. I agree we
don\'t want to ‑‑ I don\'t think it\'s the intent to limit or restrict
any of these functions. We\'re learning a lot and a lot of innovation is
going on right now so I think we need to think that through as we go
forward.

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

We\'ll talk about that more in the next section, but great point. Any
other comments in this area?

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

I lost my contact there for a couple of seconds and I had to dial back
in. But I just wanted to follow up on what David was saying, that
actually I thought that we all along were going to, everything that we
put out was sort of a sample, if you will, but that he\'s right, we
don\'t want to discourage what the vendors are doing. And I think it\'s
possible that as we go forward we can continue to add language on
anything that would say that, am I right on that, Kelly?

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

I think that\'s right. We expressed in a recommendation letter that was
presented on October 31st that, you know, what the purpose or the intent
is for these recommendations and we in no way want to adversely affect
the marketplace or stifle innovation and this is really just our
internal process that is intended to inform harmonization, certification
and infrastructure building but that there are many valuable features or
functions of a PHR that were not explicitly ranking one, two and three
but are still perhaps very important to consumers. And you know we\'re
not at all sending, we don\'t at all intend to send a signal to the
market that would discourage their availability in any product.

So I think that makes a lot of sense to be mindful of and to agree on
language in the recommendation that would be able to communicate that.

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

Can I make one more comment, Rose Marie? Kelly you used the word
certification, which raised a concern for me, because I think there\'s a
danger at least in public perception, which we may or may not intend,
that the vendor community and the public could perceive us to say, for
example, prescription refills or medication lists or any other function
is a minimum requirement, functional requirement for certification and
that in turn, if either current congressional pending legislation or
action by PHR OPR offering to federal employees for example or CMS to
beneficiaries, if they were felt they could only offer products which
had been certified and if certification required, let\'s say,
prescription refills, as a function, that would imply that only products
which had those functions could be offered to a very important
population with federal support and funding. So I think this chain of
logic that is perhaps benign in some context, perhaps in the EMR
context, could be not benign in a context where there may be federal
employees, say, who would take a great deal of benefit from a PHR
product which does not have prescription refills in it but we\'re
starting a chain of dominos I think by our recommendation.

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

I think you probably missed a lot of the testimony. We sent it to you
but we got a lot of testimony in July (inaudible) we heard on this
specific issue. What we\'ve heard, but we still have yet to have a more
thorough discussion on this. That we need to take some baby steps and
there seems to be more inputting and early consensus around potentially
certifying for interoperability and security requirements, but we will
take that on over the next two months, and you know make sure that we
get to a place where we have majority of the work group, you know,
comfortable with the recommendation in that area. When I was talking
about certification in terms of the overall prioritization process for
the community, I\'m intending it to mean certification processes that
are already in place or in development. So for ambulatory and inpatient
health electronic records that (inaudible) is currently working on there
might be interoperability requirements that might be relevant to
personal health records. So I don\'t want to get too far down the road
of certification discussion right now, because it\'s not on the agenda.
But I think it\'s important to review the testimony that we did get over
the last six weeks and we\'ll probably cue it up for one of our upcoming
meetings. So don\'t worry about the signal being sent that we\'re
already presuming PHR certification is going to be a reality, because we
have not yet made that determination as a work group.

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

Right. And I think that\'s quite important. Note that in the functional
categories that we asked people to rank, things like interoperability
were not even included. So you know this is a different set of
functionalities, with a different sort of use and presumably process.

But we will make sure to have a conversation about that as we move
forward. If there\'s nothing else on this issue, hearing none, Kelly,
let\'s talk a little bit about the visioning process we have in mind.

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

We\'re also now going to be working with each of the work groups to do a
visioning exercise for each of the broad charges. We all recognize that
there\'s very ambitious broad charges, and it might be very helpful, I
think, to each of the work groups, particularly this work group, since
we\'re in such an early phase on PHR adoption, to try to work together
to paint a picture of what the future will look like with adoption of
longitudinal, interoperable, easy to use, and patient centric PHRs and
over the next two months try to brainstorm a bit and think about what
are the attributes or what are the characteristics of that future state
of widespread adoption, and then think through what the logical
precursors will be to that, and try to also paint that picture for two
previous stages of evolution as we, you know, expect to eventually
evolve to widespread adoption. So we\'ll be sending a lot more
information about that over the next week and a half. And we\'ll have a
discussion about it on September 18th as well. So we\'ll hope to work
with some of you to maybe develop a draft and have a more designed
process for brainstorming and coming up with a way of cataloging all our
ideas as we work with the picture. But it\'s helpful to think through
what are the considerations that we are mindful as we try to move from
the phase that we\'re in now to next phase.

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

I think any who have done strategic planning processes with your own
organizations, which I\'m sure all of us have, will recognize this kind
of visioning process. And I know we\'ve found it quite helpful when
we\'ve tried to do planning for the future, and I\'ll look forward to
our doing this. We\'ll do it with a facilitator, and it will be I think
a good exercise, particularly because within this work group we have
such a broad range of expertise and interest that I think we are likely
to get particularly useful kinds of thought processes in the future.
Kelly, anything else in terms of the Office of National Coordinator?

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

That\'s it from our end. We\'ll take any other questions.

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

Any questions with this process?

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

I think a few other work group members have joined us. Jodi Daniel.
Susan McAndrew, are you on?

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

Yes, I am.

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

From CDC Jason Bonander.

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

Yes, I\'m here.

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

(Inaudible) had plans to join us late as well.

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

Let\'s turn to, we have several immediate issues and one is indeed the
ranking of the functional needs for PHRs. And let\'s see your slide is
changing on the webcast. And you will have in Kathleen\'s note from
earlier today a listing of the next two topics actually. So first is
what was in the body of her e‑mail, and this is the ranking results as
we have them. Now, we don\'t have everyone\'s ranking. We have seven
responses in. These are the functional categories. And as you\'ll
recall, in the grid that we looked at, we ranked these by how these
functionalities would, initially the first item was how they would
advance adoption of PHR by consumers, providers, and insurers, and
Kathleen you all double weighted the consumer numbers; is that correct?

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

That\'s correct.

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

Since that\'s from the perspective of our work group that seemed to be
the most critical. Certainly the others are important as well. So let\'s
take a look at the functional categories. Again, we don\'t have
everyone\'s responses so those of you who weren\'t able to do it prior
to the call can give us some verbal feedback, and we can talk perhaps
about why people thought these were particularly important. Obviously
it\'s based to some extent on our own individual experience, but also on
the testimony that we\'ve received. Let me just open this up and see if
folks want to defend the rankings we have or protest they\'re in the
wrong order.

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

I guess I did not expect them all to be grouped together and come out
with just one set. Like I see in the e‑mail that we all received, I
actually thought they were going to be divided up according to the
different audiences, you know, the way we were asked to respond to them,
whether it was a consumer perspective, or a (inaudible) perspective. So
I didn\'t expect they\'d be lumped together. And the other thing is
it\'s very interesting to hear or to see what the rankings were if you
broke them into all of the components that we were asked to respond to.

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

And I think we could have ‑‑ Kathleen we could have that presented to us
as well, presumably we\'d like to get more responses back, but I think
it would be interesting to see that broken out in fact, because they
would rank differently.

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

Can we hold for a moment here? We have to take care of this telephone
call issue. Just a moment.

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

Actually looks like the ring is coming from the line at ONC. They\'ve
cut out for a second. I think they\'re back with us now. We\'ll try to
manage that in the future.

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

Can you hear us now?

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

Yes. So Kathleen, we were talking about I think the work group, first
we\'d like to get more rankings from the work group, and if we can do
that over the next couple of days, that would be important and helpful.
And I think the work group would then like to see back, I think Myrl\'s
question was a good one, of how these in fact did rank out if separated.
So because I suspect they would rank by consumers and by insurers, for
example, would come out quite, rather differently.

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

I guess it\'s more than just us asking. I actually thought the intent
was to look at that refined kind of information. I\'m not sure how good
it is to lump them altogether. I\'m concerned how this will be used
ultimately when we move forward with recommendations.

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

I do think these would have to in fact be described separately. I think
you\'re absolutely right. Because certainly our circumstances where one
might say well this particular functionality or group of functionalities
would make employers likely to do it but might not at all make consumers
eager to use them in which case one wouldn\'t find them productive, or
you know employers might use them in one circumstance but outside
vendors might be willing to use other functionalities. So I do think we
need these separated out as we consider them for our use case. I was
telling Kathleen that would have been the intent originally?

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

I think that\'s right. I also think there\'s not necessarily direct
relationship that we can presume between say the number one and number
two ranked functional categories to the drafting of a use case. It may
be that if lab results are important after we finish the entire process
and everyone weighs in and we have enough of a discussion on this, that
lab results may have already been addressed to a large degree through a
use case this year in 2006, through the electronic health record work
group, and there wouldn\'t be a tremendous amount of additional work
perhaps in the context of PHRs. So we\'re going to have some flexibility
to develop these use cases to make sure that we\'re trying to advance
interoperability and infrastructure building as much as possible, as
much as the processes outside this office will allow in 2007. So
they\'ll have to be some judgment made as to, you know, what\'s already
available, what could we potentially accomplish over the next year
through the information process and the other processes I\'ve mentioned.
So to the extent it\'s applicable to our own work group process, if
there\'s some future work that we do in making recommendations on
interoperability or making recommendations on issues around portability
or infrastructure, there\'s a variety of things we could be considering
that this ranking exercise would help inform our thinking.

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

Kelly, a couple of points that strike me. One is that I think first of
all it\'s a great exercise, but we might also develop another survey
which would look at these categories similar to the way CCHIT did for
its functionality, which is basically three categories. Must have, would
like to have, and would like to have in the future. Because when you\'re
trying to rank whether or not the PHR should have secure messaging,
probably everyone would agree it has to have it. So to rank it two,
three or four is irrelevant, because unless it has it, it\'s probably
not going to be viable. So maybe in addition to this type of survey, we
may want to be looking at what would a consumer have to have in order
for them to support this type of product.

And the second point is we focused almost ‑‑ well, almost entirely on
the clinical side. There\'s an argument to be made that a sustainable
business model may want to have some administrative functions in it as
well. Things like medical billing or eligibility or as you know the
administration is pushing hard for HSAs. We may want to build in some
questions on those issues to see if consumers and providers and
employers and insurers are also looking for a little more functionality
on the administrative side.

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

Kelly, and to Rob\'s point, and also I think the part of this exercise
is from what I understood to get a sense of this work group, because
part of what it sounds like your contract is going to do is to identify
some of those other issues in a pretty formal way, and again the HL
seven PHR work group is doing a very similar exercise, 60 functions that
they\'re recommending have been outlined, and they\'re using a similar
conformance criteria now which is essential now, meaning in the next 18
months, essential future, because the technology or the capabilities may
not exist, and then optional.

So, again, it\'s sort of I think what this group is running into is what
work that\'s going on elsewhere and other venues that\'s not necessarily
coming forward to this particular group, so that now we\'re sort of
trying to put extra work, not extra work, but we may be trying to make
this exercise almost duplicate, if you will, some things that are going
on. And I\'ll give some thought about maybe making some suggestions
about how we can bring some of that information to the group so that
we\'re all operating with the same information in front of us. Because I
think it was an interesting exercise. I think a lot of work was put into
it, and perhaps we could focus on what we have to do with it today at
this meeting. And then see if we can pull out some other information to
share.

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

I think that is a good point. Kelly, were we ‑‑ as the contractor goes
forward with the environmental scan and focus groups, were we going to
try to get this information as, and it sounds as we still may need to
broaden to include some of the administrative functions, registration
data, eligibility, things like that. Do we want to, are we going to
include these in a specific way in that work?

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

We had not intended to design or to have the focus groups explicitly get
involved in the ranking of these functional areas. If we feel it\'s
important, we could do that. But I think we were hoping to make this
sort of an expert‑based process and have it informed by what we learned
from the environmental scan to the extent that\'s readily available
before October 31st. But I fully recognize how we don\'t want to
duplicate other people\'s work. Particularly if there\'s been a lot of
time put into the HL 7 process. But I guess the other consideration,
we\'ve talked quite a bit about not really having a very good
understanding of what consumers really want to be able to categorize
essential now, essential future, or a must have or like to have. So it
might be a little bit challenging for us to understand at this point the
finer categories, even though I think they\'re really desirable. And I
also think that\'s an explicit link to the concept of certification that
will include functionality and we\'re not presuming that at this point.
So I guess we definitely have more time to work through this. We have
until October 31st to make a recommendation. But the priority setting
for 2007 needs to happen relatively soon, because we need the time to
actually act on the recommendations and develop use cases and get them
out to all of the other folks that are currently working under an ONC
contract, but obviously we\'ll have a long life beyond an ONC contract.

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

I guess, and I don\'t think we were, anyone was implying that we were
going to have people rank these in focus groups or, you know, do it
quite as explicitly, but it does seem as though things that you know
fall at one end or the other of the spectrum here, we might want to
validate that in the focus groups, and because we could in fact, I
suppose, not be correct in what the consumer, how the consumer views it.

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

Right. That makes a lot of sense. We\'ll definitely circle back and see
if we can work that into the time line. Initially the focus groups were
not planned to be sort of, you know, the initial work that was going to
get done over the next six weeks, but we can ask to have that moved up
it\'s just a very compressed time frame in general.

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

Can you tell us to what extent the rankings, for example, a little bit
back to Myrl\'s question, in terms of how we think they would advance
adoption by consumers, for example, which we weighted heavily, how that,
how disparate that was with the rankings for providers and employers and
insurers?

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

Michelle Murray is actually the one. She\'s an ONC policy analyst who
designed and came up with the criteria and analyzed what we have so far.
Do you have any ideas that you could share or any data.

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

I don\'t have that detail with me. Unfortunately, I just have the
overall rankings. I guess we figured we\'d continue to collect responses
from work group members and get that detail out to you.

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

Okay. So we\'ll get that out to the work group.

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

This is a preliminary view of what we\'ve collected in the first couple
of days.

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

Could we please talk about the next steps we\'re going to take with
respect to this exercise?

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

In terms of the ranking?

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

Right.

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

Right. So one key next step is to get everyone to rank. And can we ‑‑
and if we could try to get that done by the end of the week. That gives
us another 36 hours or so to get things in, perhaps allowing Monday as a
final day, Kathleen, Kelly, will that ‑‑ can we add them up again on
Monday?

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

I guess the other consideration is whether or not, Lorraine, if you have
some information that you\'d like to share from HL 7 or other sources
that would perhaps inform some of the thinking that\'s already been done
in this area. And we can allow for more time for people to consider
this. It would be helpful to have it in a week or more before the next
meeting so we can appropriately analyze the results and share them with
you.

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

The purpose of this exercise is to get feedback from the group on what
they perceive the priorities to be for personal health records?

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

Yes.

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

In terms of its functionality?

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

Uh‑huh.

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

Right.

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

In terms of how we think what\'s going to be most important to advance
adoption.

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

So the idea here is to have this inform our deliberations on the
priority areas in 2007 and inform the use case related to personal
health records for the October 31st recommendations.

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

To advance adoption by individuals rather than by the clinical
community?

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

I think we differentiated between the clinical community and the, and
consumers in their responses.

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

I know I filled out my little sheet.

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

One thing I want to echo what\'s difficult about this exercise is
depending upon populations, too, what is considered the most important
or highest priority is definitely going to differentiate it. If you\'re
on a lot of prescription drugs, prescription refills may be high. If you
have young children, immunizations, I know it\'s not on the list, may be
high. If you\'re computer savvy like secure messaging might be high. I
think it becomes really difficult with this exercise. Just going back
to ‑‑ I know this is trying to help facilitate future work, but I think
some of the difficulty is there\'s so many functions that I think
there\'s a core component of functions that at least what we heard from
the testimony where you saw PHRs that are offered and when folks talked
about them I think there\'s almost a corset of things that are important
and to kind of rank them one through eight could send a signal that\'s
problematic as we mentioned earlier that some are more important than
others that we don\'t want to do. I think if you look at different
populations different things become more important, and we don\'t want
to limit this or prevent or stifle innovation. So that\'s the difficulty
I think of what I struggle with. I know I\'ve tried to get input from
our plans of what they\'re doing, and there\'s no common thread. I think
it\'s based on their markets where they\'re using this what they see is
most valuable and I think it\'s something we have to keep in our mind.

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

I think there\'s something that I could tell you if this would help,
Kelly or Rose Marie. We came up with a list of seven criteria in which
to evaluate the functionality. So let\'s say we took our functional
categories. This sort of gets to Justine\'s point about we can\'t get
perks. We have to start somewhere today, obviously. We\'ll strive over
time. And so we have this list of, I think it\'s six or seven that we
could send around, that I could send around. And so, for example, the
question is does the function significantly encourage the consumer to
use and derive benefit from the personal health record initially and
over time? So if you look at, you know, prescription refills, and you
measure it against those criteria, you know, does it sort of pass
muster? And then there\'s another one, does the function improve
consumer convenience, experience and efficiency? So they\'re all pretty
practical.

If that were to help the group in looking at the spreadsheet again, that
might help in some of the evaluation. And we wouldn\'t perhaps it would
help un-stick us a little bit. I don\'t know. It\'s just another
suggestion for something that I could get out very quickly after the
meeting for people to look at.

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

I think that would be great to have. No question. If you, I guess do we
want to send it, Kathleen, if we get it to you ‑‑

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

I think the best suggestion is Lorraine you get it to me and I\'ll get
it out to the entire group.

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

It\'s a major issue, isn\'t it? Because you know if you think about
where, again, if we sort of our visioning for the future and think about
where you\'d like to be and the population that you\'d like to have
personal health records, as large a population as possible. And as we
heard in some of the testimony, public testimony last time, you know
populations including the whole diverse population, you might think
about it rather differently than you would if you think about what can
be achieved in the next year or two. And I guess to some extent, you
know, we may be able to describe that in the text. But insofar as it
informs our rankings, I guess do we, Kelly are you viewing this as our
ranking of how, what we think is most important for the initial adoption
of personal health records as kind of the process begins? With other
things left until later?

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

We haven\'t really tried to think about what part of the curve we\'re
going to be impacting. But I guess adoption in general. But it would
make sense in our consideration right now we\'re really early on in the
adoption curve. So, yeah, it is, I guess, to facilitate accelerated
adoption in this phase.

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

And you know, again, whether you\'re talking about a population with a
lot of chronic conditions for whom there are going to be lab results,
you know, this sort of, for patients in whom conditions have already
been discovered versus the, if you will, the primary prevention
population, since those are going to be different in terms of whether
employers cover them or not.

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

I want to raise just one other definitional issue. You know, just
listening to different people talk about secure messaging, and I
actually think, and I was confused by exactly what was meant by that.
And so I still don\'t know if it meant secure messaging meaning being
able to e‑mail back and forth, which is how I interpreted it, so I had
it actually less important for certain things. Versus I did not think of
it as having anything to do with privacy and confidentiality of the
record.

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

I think we did mean that that was secure messaging with the healthcare
provider.

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

That\'s right.

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

We may want to if you continue on to look at them and make sure the
interpretation by the person filling it out, you know, they won\'t
misconstrue what\'s meant.

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

What we might do is be careful to ask the ones we have in so far just
query people and make sure they understood that particular comment. That
particular category.

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

I\'ve really been interested in this discussion, and I completely agree
with the comments about a lot depends on what population you\'re using.
I want to throw out there and see if anybody is interested in this. We
have currently contracted with somebody to help us look at cultural
competency issues in developing health information exchanges. And what
they\'re doing is helping us with developing an approach for assessing
how well we\'ve addressed cultural issues in various aspects of
projects, and we want to make this available to folks trying to develop
a paradigm that people can use and take with them and help them
determine whether they\'ve reached out to the people they need to
address things in a way that, well, frankly, increase the value of
health information and exchange. And I would include PHRs in this, so
that they will actually use them. And I think this would be particularly
valuable to folks that are looking at making this PHRs for Medicaid
populations, and chronic illness and Medicare populations.

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

Let me ask if that would be one of the categories like interoperability
and privacy that is so important that we should put it in that category
of \"must\", and is that, what do people think about that?

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

I wasn\'t thinking in terms of making it a category but just bringing it
in and developing priorities, having some of this thinking with some of
these folks and how they\'re approaching, thinking through, as we
develop our priorities. Are we even being sensitive to different
cultural things when making this list of priorities?

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

Susan, I think we\'re going to get into a discussion of our work plan,
and we have a whole section in the work plan that\'s focused on consumer
engagement and health literacy, and I think we talked to Helen a little
bit about, you know, some of the work that\'s been going on in that
area. So it would be great to maybe think about how especially we could
work in the cultural competency work that you all are funding into our
subsequent meetings. Because we are definitely, you know, considering it
to be one of our critical components that will be discussing a lot more
in the next few months.

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

I just wanted to get a sense of how interested the work group was in
this. And we are beginning to lay out our work plan for this contract.

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

That\'s great. It would be great to talk more about it.

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

I think I can\'t see heads nodding but I would bet there\'s a lot of
heads nodding thinking these should be culturally competent.

Well, we don\'t really have, you know, full information from the
rankings, and we\'ve talked about some of the things that we need to do
in terms of getting a little further information. Are there ‑‑ one item
that Nancy mentioned when we were on a brief call yesterday that we
don\'t have included here, that is the issue of adverse events. And I
think the issue there is that if one has a personal health record,
sometimes that falls under the heading of allergies, but it doesn\'t
always and a listing of adverse events, we talked some about how complex
that is to adjudicate to know what an adverse event really means. And
how it, you know, how it came about and such. But is there, I\'d like us
to hear a sense of those on the phone about whether they think that
that\'s a category, a functional category that we should adhere. She
made the point that of course anyone who has had a, you know, a loved
one suffer an adverse event of whatever sort, thinks about this as a
very important, very important issue.

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

I apologize for being late to the call. I have a question I need to
understand a little bit more about what you mean by that. Because from a
regulatory perspective adverse event reporting is a very different
animal from the notion of a patient recording, listing a record of
things that they\'re intolerant of or had a true adverse event or a
failed therapy on.

So how are you defining that?

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

I think that was one of the problems that came up when we began to talk
about it. You know, I think whether you\'re talking about an adverse
event meaning you\'ve had an adverse reaction to pharmaceutical or
whether there has been you know adverse event has a very legal sort of
sound to it. And I think, but I think the way in which Nancy was ‑‑ and
so I don\'t think that was the sense in which she was meaning it. I
think the issue was that there is sometimes important clinical
information that would be captured under that heading, and I think
defining it is really tricky, actually, because it does in some
circumstances imply that there might be blame or that there might be
reporting required and I think we don\'t want to ‑‑ and of course people
often get it wrong, because it\'s so hard to know what the root cause of
an event is. So I thought we needed some broad discussion of that. I
guess that\'s one very important point is how we would define it and in
what category, you know, what sort of terms we put around it.

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

Nancy and I have talked about this yesterday after we got off the phone.
And I think that what we thought was important is obviously anything
that\'s going on with the patient should be in their personal health
record. I guess I felt that sort of in the history, just the healthcare
encounters that there would be an opportunity, because if you\'re
keeping your own personal health record, anything that happens to you
health wise, you\'ll want to put it in there. So we talk about whether
it should be a separate category, but I\'d really like to hear from the
other people. But I do feel that it should be somewhere in the personal
health record.

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

We\'ve been looking at this issue from a complex setting. It is a very
complex thing. As we look at how this information exchange, one
perspective that may be useful to use instead of talking about adverse
events or just allergies is to talk about outcomes and associating
outcomes with both medical therapies, medical therapies and also other
treatments. Just as useful information to know did something bad happen
when I took this medicine. It\'s also useful for the clinician to know
did something good happen. And establishing that a therapy does work for
a patient in a certain setting can lead to, you know, well it works for
this, they\'ve used it and as we\'ve explored this issue, just one thing
I\'ve observed in this is that there frankly aren\'t good standards out
there for vocabularies yet that are widely accepted and adopted for
measuring outcomes. There are adverse event vocabulary standards but not
on the flip side of, okay, so they took a drug and it worked, or it
worked for a while and then they developed a tolerance, intolerance to
it or they developed a tolerance for it, and they reached maximal dose.
It\'s not an adverse event but it\'s something useful to know. They can
no longer get benefit from this therapy. So couching it in outcomes
language may be a more positive spin on it, and also the fact that this
is obviously would be a patient reported outcome rather than an official
diagnosis kind of outcome.

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

That process seems like a terrific way to think about that and a real
benefit. We think about any number of reports of (inaudible) description
of things. But many individuals described family members getting care.
But one of the things that often seems to be missing in the health
record or that people don\'t look at in the health record the next
healthcare provider may not look is to say you know well they\'ve
already tried that, particularly in difficult circumstances, difficult
cases, you know the next consultant comes in and says well I think we
ought to try this and they don\'t know that two months ago that was
already tried and didn\'t work so I think that concept of results and
outcome treatment is great, so either there\'s sometimes been a result
that wasn\'t good or a result that was. But you want to know both.
That\'s the future of things. Because I think you\'re absolutely right
we don\'t have exactly a way to phrase that now. But outcomes of
treatments would certainly be desirable and whether we put it under
healthcare encounters, it might or might not always fit there. Other
thoughts about this? This is a difficult issue.

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

I certainly think at some point we need that information. All of the
work we know is underway about trying to identify what truly works and
doesn\'t for multiple reasons. To me I just ‑‑ I guess I assumed that at
least at some point electronic personal and medical records would have
reports on what\'s working and what isn\'t. And I would go so far as to
say at some point I hope that we can use other information with
permission from the individual for additional research purposes.

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

I think often it is there. So I guess we don\'t want to say that we
never know what happens when a treatment is applied. You know because
often it is in the medical record. But I think there are things that get
missed and what Nancy was reaching for was how do we capture the missing
information. So it may be that this is one we need to have there as a
kind of in development thing. But one that we think is important.

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

I would personally advocate it should be on the list. It\'s one of those
more future‑looking capabilities because there\'s an awful lot of it
that has to be built out. And part of the (inaudible) there\'s
documentation perhaps in the chart about this stuff sometimes, but the
bottom line is doctors for the most part don\'t get reimbursed for
tracking outcomes, they get reimbursed for intervening and the tracking
outcomes is just part of good diligence. It\'s not really ‑‑ it\'s not a
reimbursable event right now as it probably should be. And so it
doesn\'t typically get done in the, with the strong documentation that
would be desired.

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

Are there any other categories that ‑‑ we\'re going to kind of hold
that. We think it might be part of several things; it might be
strategies, part of healthcare encounters. It may not entirely be
included in those, the language but basically because if we begin to
call it outcomes, that might help us to some extent, and we\'ll need to
work on how that part gets developed. That may need to be, vendors may
need to be encouraged to think about that, because that may not be
something that\'s high on their list. So Nancy has brought forward an
important issue to us.

Any other issues in terms of the functional categories that we want to
think about before we go ahead and get the rest of the ranking done,
we\'ll get more information from Lorraine, try to do that perhaps then
over the next week or so.

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

It sounds like if people had other categories that will come up, since
we\'ll give them a couple extra days they could add them to the list, is
there a way to do that like in the e‑mail response?

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

I guess the only new thing I heard other than adverse event possibly
fitting into maybe one of the other categories or being separate, I
guess it\'s not entirely clear, but the administrative functions that
Rob brought up, that that\'s ‑‑ we clearly don\'t have.

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

Right. So that would be an important one. And I guess maybe we should
call this last one, since we\'re not sure where it fits outcomes of
treatment, should we put it in there for the moment under that heading,
even though some parts of it might ‑‑ do we want to make it a separate
category? Let\'s kind of go around the group and hear yeses or nos on
that.

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

I\'m hesitating, because again I think when you see the description or,
when you see the category of summaries of health visits, I just don\'t
know if people will understand the distinction that often the outcomes
would not turn up in those summaries of health visits. It is important
to have that information. At least as we said at some point if it\'s
added, I would again suggest that there\'s some clarification to say
that while we recognize that some may be in the health summary report,
it\'s a separate item because of how important is it.

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

How about if we called it outcomes of treatment not otherwise included
in summaries of healthcare encounters? So it could be kind of right
after that category.

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

It would seem to me it\'s sounding much more like how do we ultimately
define what we want to have in these summaries of healthcare encounters,
and/or how do we want to have the record reflect existing conditions.

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

Let me just say, for years, because we have a large referral, our
practice is largely kind of second and third opinion, you know, we get
in large medical record sets. And very frequently along with those
medical record sets, which include lots of summaries of many healthcare
record encounters from patients who have had a lot of complicated ones,
there will be a summary by the patient, and the summary by the patient
often has a great deal of interesting and important additional
information that really is not included in those healthcare encounters.
So you can find the healthcare encounter, and then you match up the
patient\'s notes and it will say, well, you know, this is what I was
given, I took it, but I had this reaction or it didn\'t help at all with
what I was doing, so I stopped taking it. And sometimes it means that
there was perhaps a coincidental thing and maybe stopping, it wasn\'t a
good idea but sometimes it\'s a real event. And sometimes they told the
doctor about it the next time. Sometimes they didn\'t. So there\'s a lot
of information in those. And many of the people who write those out for
us would put them in their personal health records. But there needs to
be a place to put it. If you don\'t have kind of a comment section or a
place where you can put in additional things then it\'s not very
patient‑centered.

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

I would agree that a real benefit is to have a place for a patient
reported outcome to treatment where they can comment just as you were
describing because it\'s helpful to the clinician. It can be a feedback
mechanism for the documentation of the clinicians record and ultimately
we talk about objective versus subjective results of things and we talk
about not wanting the patient to tamper with the information, but with
outcomes in particular, those outcomes generally are only patient
reported and the doctor hears that, how did it work? Well, I\'ve got a
stomach ache when I took it. Or it seemed to work fine, my headache went
away, whatever it might be then they record that. They may have some
objective findings, the star is gone or the EKG is normal or the blood
pressure is better. There\'s a lot of stuff but it can be a reporting
mechanism to provide that information to the doctor as well.

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

Okay. So let me ask if ‑‑ let me ask if anyone is opposed to adding in a
functional category that says we\'ll have to look at it, but it says
something like patient reported outcomes of treatment or outcomes of
treatment not ‑‑ yeah, maybe that\'s what it should be called, because
it\'s not whether it\'s in the healthcare encounter, that\'s not so
important.

So we\'ll list it as a category and we\'ll get more information about
how important we think it is and it can be one of the things we touch on
in focus groups perhaps then as we hear more testimony. Interesting that
no one the ranking of educational information was so low. How sad, huh?

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

One point of clarification would be do we want to say patient reported
health outcomes so that there might be some aspects of quality life that
would be construed as important that would typically be captured under
not just necessarily in response to a treatment, but, you know, sort of
psychosocial assessments that might be important. It\'s more from a
research orientation. It\'s not ‑‑

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

Do you think in terms of patient reported health outcomes would be
thought to include that or that we would need kind of a parentheses to
explain that?

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

I was thinking it would be including that. But it might not just be
outcomes. There might be other factors that they want to capture that
are related to their health condition and that kind of thing, and that
maybe helpful and not just the outcomes.

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

It might be helpful for what the individual puts in themselves or some
day when there\'s connectivity between the electronic record and the
personal health record that would be physician populated, another
differentiator.

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

So this part would be patient reported health conditions and outcomes?
Then that would allow you to have the quality of life, the psychosocial
conditions, Bates conditions, and outcomes.

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

We need to be clear that the list of conditions and allergies, that
other category, if we\'re trying to be mutually exclusive, that would
not be patient‑entered.

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

Good point. Good point. So maybe this should be ‑‑

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

You said allergies would not be patient entered.

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

No we shouldn\'t presume the way the data would be entered whether it\'s
physician populated or patient entered.

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

We should have it patient entered until we have the functionality?

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

Isn\'t that a big question, isn\'t it, actually because the patient
reported allergies in the very least and the physician documented
allergies can be very different.

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

Right. I\'m assuming because we don\'t have electronic records
populating personal health records yet that we almost have to start
there and it\'s part of the way the individual communicates with the
physician, like with medication histories.

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

I guess that\'s a good point. These are patient populated and then you
might take them to a physician, show them to a physician, you might
correct them or not depending on how you felt about it.

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

My thinking would be there may be a fair amount of the health plan PHRs
that have some lists of conditions and allergies based on their claims
history. Even in your pilots Lorraine you might end up seeing that.

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

Not allergies, but it\'s a good point it\'s not a thing that would come
on a claim unless it was an allergic reaction that got treated. But
you\'re right we could look at that.

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

Certainly primary and secondary diagnosis would be on claims and
generate a list of conditions.

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

If I didn\'t have a claim for bee sting or allergic reaction to
penicillin. But I\'ll add that as something we take a look at.

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

We\'ll find a way to word this category to make it distinct from the
other categories and to include the topics we\'ve talked about.

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

That sounds great.

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

Okay. Anything else in the functional category?

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

I\'m wondering if there\'s a category that could be added to reflect the
ability of the patient to self‑enter and track data.

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

I see. Sort of a process kind of, does this record include your ability
to...

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

I cannot imagine an electronic personal health record where the
individual who cannot put in their own information. Some of these things
I guess there are lots of assumptions with all the development that\'s
going on, but if it\'s a personal health record, in the way that I think
any of us mean, then clearly the person needs to be able to enter
personal data.

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

Maybe it would be helpful if there\'s consensus on that point to list it
as an assumption or in the recommendation that we would assume that
it\'s very important to enable patients to self‑enter data. But that\'s
not discretely a functional category, if we consider that to be a
possibility with any of the categories that we\'re looking at, or most
of the categories. Like if we think that they should be able to enter
their healthcare encounter history or patient reported outcomes or when
they requested a prescription refill. There could be patient entered
data probably in many of those categories.

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

I guess we may have made assumptions as people ranked, assuming that a
summary of a healthcare encounter was in fact, came from somewhere else.
I would bet that some people may have thought that summary came from
the, you know from an office or from an EHR.

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

Could I ask a question, just as I\'m thinking about this as I\'ve
thought over the past year of personal health records and patients
entering their own records. How do you all envision this? Would there be
a separate category that would be listed as patient‑entered information?
I\'ll tell you why I\'m a little concerned about having a patient have
total trump power, particularly over things like allergies, because we
talked about that a while ago. Many of them are GI things and you\'re
going to end up with kind of bad records if you do that. How do you
think, how do you all feel about that?

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

I would just suggest to the group if folks feel strongly about it, that
maybe we list that in explaining our recommendation that we say we would
assume that patients should have the ability to self‑enter data that\'s
relevant to these functional categories. But that I think the action of
self‑entering data actually applies to many of these different
categories that we\'re talking about and ranking.

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

Do we assume that ‑‑ I think one way to handle that is to have the data
in the record identified as to where it comes from.

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

That\'s what I was going to say.

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

What we currently do at the VA, we do exactly that. For self‑entered
information at the bottom, in case the patient prints it out takes it to
an outside provider, there\'s a notation at the bottom saying it\'s
patient‑entered, for self‑entered information.

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

Question: When they do that in the VA record, is there, so, for example,
if I found out that my great grandmother died of pancreatic cancer, that
would be an important part of family history, does it go into the family
history part and is asterisked somehow or is it entered in a single
place as patient entered?

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

They have a self‑entered area that\'s broken down by functional category
and then they can print out a summary which includes family health
history. They can print out a summary of the health summary so it\'s all
on one page or two pages. And take it. At the bottom it says patient
entered.

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

Just for clarity, I\'m in agreement that there are components of many of
these functional areas where there\'s an opportunity for the patient to
enter information, but my original comment was thinking more of what is
in the VA personal health record, which is self‑entered metrics, some
are templated, there\'s an opportunity for the patient to track blood
glucose. So I\'m just wondering if that turns out to be incorporated
into any of these other functional categories, and if not we may want to
add it.

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

That\'s quite an important thing for that I bet will have implications
in terms of whether you over-report or, you know, adjudicating that data
is not easy either. And things will be based on that adjudication. Not
necessarily diabetic control maybe not. But in some circumstances
physicians will be reimbursed differently if the patient results are
different for something. Presumably one will make it for objective data
that doesn\'t have any issues in terms of reporting accuracy. But that
is a complex, that\'s a complicated and obviously critical to have it be
accurately designated. In terms of the functional categories we\'ve now
captured the additional information we think we need. Should we look at
the model information here for a few minutes before we go on to look at
the work plan?

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

I\'m going to have to drop off, but I just wanted to mention something
to the group. GAO just published a report on September 5th which was a
report on a survey they had done of federal contractors and state
agencies including tri care and Medicare on privacy breaches. And I
thought the numbers are quite high on the breaches and I thought it
might be valuable for everybody to take a look at that to get a copy of
it and read it.

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

If you send that to me, Gail, I\'ll be certain that it gets distributed.

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

Okay. I\'ll do that. All right. Thank you, all.

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

Okay. Now, in terms of the model, our ranking here, and tell me if this
is the total score or if this is again the advancing adoption score.

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

I\'m going to defer that question to Michelle Murray here who was
actually the person who compiled the results.

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

It\'s a total score, with the weighting of the consumers a little bit
higher.

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

With weighting of the consumers ‑‑

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

We totaled their scores and we did the average.

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

This includes, would it advance adoption, would it encourage a
sustainable business model and would it improve communication, includes
all three of them?

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

Same criteria.

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

Okay. In the one above, when you gave us that one, it also then included
both communication and functional business model, sustainable business
model.

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

Right.

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

So it is very tough to separate that out. So we\'ll need to see that in
detail. Because knowing which of those things we\'re weighting is going
to be critical to our having further discussion.

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

To let you know we did delete employers and insurers in terms of asking
the question would this model of use advance adoption of PHRs, primarily
because we had both employers and insurers represented in the models of
use. So the criteria were identical, just the sub sets were slightly
different.

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

Seems to me, for example, that a tethered PHR, you know, the rankings
for sustainable business model for communication and for advancing
adoption might have come out quite differently. You know, I would be
surprised if those all came out the same.

But maybe Michelle you can tell us that. For example, did the weighting
by consumers overwhelm the ranking so that ‑‑ see, I would have thought
that the personal health record, if the consumer weighting outweighed
everything else, that the untethered ultimate control one would have
ranked highest with consumers.

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

But Rose Marie, if that\'s the case, then it doesn\'t have the populated
data in it, I think. Which is maybe why the tethered one got ranked
higher.

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

Doesn\'t say that it doesn\'t have. It\'s not stated in a way that says
it doesn\'t include.

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

We\'re all fairly sophisticated here. That was my assumption from
what\'s out there, and therefore at least I personally ranked the
tethered higher from the consumer point of view, knowing we need the
data being able to come from multiple sources and put into the record
without the person having to physically put it in all themselves.

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

I echo and endorse the comment that was just said. I did it from the
perspective if we moved it forward it would do it faster than if the
consumer had an untethered record.

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

That\'s the definition untethered it\'s just totally disconnected.

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

Right.

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

Okay. So that was the assumption that untethered didn\'t mean that it
was fastened to your employer and couldn\'t come with you, it meant that
it was attached to other healthcare systems and other information could
come in. So that the personally controlled health record is really
simply, you know, a place where you can put in what you feel like
putting in.

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

I think you said that maybe backward. Tethered is when the information
can be connected or is connected. So the information can come from a
variety of sources.

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

And untethered is you put it all in yourself from whatever you happen to
have.

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

It\'s like buying a disk.

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

To put things on. All right. I for one misunderstood that. But I
haven\'t been with you so long.

One of the things that wasn\'t included in our description here was the
portability of the, and again perhaps because we\'ve left that separate,
we didn\'t include the issue of portability. That is, would your
tethered PHR be able to move from one employer to the next. I know we
have employer‑based PHRs as a separate issue, but for both of those we
don\'t have portability as a function. Did we assume that they would be
portable or they wouldn\'t?

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

This is sort of the chicken and the egg with portability and
functionality. In many ways we\'ve been thinking of functionality
thinking it drives interoperability. If you get the standards in place
and things networked, then it will be portable. But that you can sort of
attack that best at a functionality level. Because it\'s always hard to
separate functionality and interoperability. But it\'s a really
important point that we didn\'t specify in detail in each of the four
categories. And I guess maybe it would also be helpful to talk a little
bit about why this is added. And this is based on a conversation I had
with Paul Tang, and the co‑chairs, because there\'s a, last year when we
were dealing with six different use cases coming in from NIHN consortia
(inaudible) and HCVE, they all had different approaches to describing
the data model or the architecture that would be relevant to the PHR.
And in describing the medication history and registration summary use
case. And then it made it difficult for this office to harmonize the use
case and make the determination what is the (inaudible) so we feel we
need some level of input to make determinations about what to specify in
a use case. And again this doesn\'t have to again send a signal to the
market that the tethered or untethered PHR is the way to go and that\'s
what we think the future is, it\'s more from an infrastructure
development and a work group perspective I have, what do we feel would
be most important to advance adoption, and perhaps maybe even consider
some of the criteria that Lorraine had presented before if there\'s some
that are not explicitly linked to functionality.

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

So could I just hear some discussion, for example, of why, of the
criteria people used or the concepts that they used in saying, for
example, that the tethered would be the most used, most adopted, and
that the employer‑based would not be. Now, the employer‑based is again
is there an assumption that there\'s not sharing of data with authorized
healthcare providers?

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

Employers are not going to be where the action is in the future.

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

That was based on the business model, primarily?

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

I think that, and also I don\'t have an understanding that something
came from an employer that it wouldn\'t actually come through the health
plan with whom they contracted.

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

That\'s exactly right. That\'s where the data would come from is the
various health plans, how they\'re populated is based on the claims.
Unless it\'s a self‑insured employer, and they\'re processing the claims
themselves, you know through a third‑party administrator.

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

Rose Marie, in order to answer the question in terms of tethered,
whether it\'s tethered to a provider or to a health plan is that if we
really want this clinical data to be provided to the individual to then
use and to supplement and to understand and to maybe link to educational
materials, the best source of it is through those organizations
providing the claims and all the data. And I think that\'s why people
would like to get it directly from those sources and then have the right
to either, well to both add to it and to make requests, let\'s say, for
corrections or additions or modifications to the source of it. I think
that\'s where the value‑add of the tethered PHR is perceived, from my
understanding. And from an employer, again, an employer is an access way
to a PHR and they want to keep healthy employees but the source of the
data is a provider and the claims and then ultimately the health plan. I
don\'t know if anyone else has anything else to better explain it.

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

Do we feel we\'ve captured in this ranking and we\'d like other
people\'s rankings, but do we feel that we\'ve captured this and the
definitions appropriately so that we\'ll be able to clearly describe
this?

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

I think we\'ll have to see them again to know.

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

Yeah. Anything further we want to discuss on the functional needs here
and the ranking, and we\'ll hear more about this obviously at the next,
when we get the rest of the information in.

(No response.)

Let\'s then turn to the workgroup work plan. You have it in the
information updated work plan that we received this morning.

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

To clarify, in the bottom left‑hand corner of the work plan, it says
\"as of September 6\" that\'s the version of the work plan you should be
looking at.

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

Kelly or Kathleen do you want to go through this quickly for us. We\'ll
see the various segments and then we can see if people have comments or
questions as we go along.

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

Sure. I\'ll run through it quickly. The first sort of segment of tasks
is related to this visioning exercise, which I mentioned to you earlier
in the call. While we have sort of a high level process in place that
will conclude in about six weeks, we\'ll be getting a lot more
information out to you in the next week and a half on what exactly will
be entailed and what we\'ll try to accomplish in two different work
group meetings over the next six weeks. So that\'s just a description of
some tasks involved with that visioning process. And then the next
critical component is PHR functionality. I think as you know we\'ve
already synthesized the testimony that we received from July, and we\'ve
also, Michelle Murray did a brief synthesis of the literature in this
area, so you all have that information. We are, I think, just starting
on reviewing some of the on-line demonstrations. We finished My Healthy
Vet the other day and we have several others lined up. We\'re going
through our ranking exercise which we hope to finish later this month,
and we\'re going to be drafting recommendations in October based on the
findings of our ranking exercise. And then the next critical component
is PHR interoperability. We did get a lot of good testimony in July
which we synthesized. We\'ll plan to have additional testimony, not only
a report from the ONC, Altarum contract with the environmental scan but
we expect we\'ll be getting additional testimony from a report from CMS.
There\'s a new person who is working closely with Lorraine, Will
Crawford, who is organizing a meeting with Intel and MIT, on PHRs, and I
think there\'s going to be a lot of discussion on interoperability at
that meeting. So they\'ll be giving a report out from that meeting to us
as it relates to probably both interoperability and open source issues
and business models, since all three of those areas are on their agenda.

And then we\'ll be going through a recommendation process later this
year. We\'ll likely take on or try to come to conclusion on what we all
feel around certification, what\'s appropriate, what we would all
support in terms of a recommendation. And any other issues related to
interoperability and portability that we feel we have enough information
on to make some recommendations, actual recommendations on.

And the next critical component is consumer awareness. We\'ve already
heard a little bit about consumer engagement and awareness from our July
testimony ‑‑ actually a fair amount that we\'ve learned at that meeting.
But we recognized that we need to go deeper into public action models
and into E health literacy, which is a new and emerging concept. And try
to get some specific input which we\'re planning for September 18th on
those two areas. We\'ll be doing the focus groups and hopefully within
those focus groups do some testing of messages and framing of messages
that are relevant to the risks and benefits of PHRs. We are also going
to be hearing from folks from the national cancer institute and possibly
Helen Burstin from ARC involved on E health research and many of the
panels they\'ve lined up have to do with personal health records, and
health literacy. So we think there will be some very good findings from
that meeting that we\'ll be hearing about in October most likely. And
within each of these critical components we expect to, once we get to a
certain point where we\'ve had a lot of input and we feel comfortable
that we\'ve had enough information to start analyzing we also want to be
considering specific stakeholder interests and roles and how we could be
thinking about specific actions to take. So we\'ll be doing a
stakeholder analysis with each one of these. And then leading from
there, actually developing some actionable recommendations. And then the
final critical component is PHR business model, and we did get a lot of
good information already from the vendors we\'ve heard from through the
last, and employers and plans, from the last hearing. But we expect to
hear even more on September 18th both from the federal government.
We\'re in the process now of working with three or four different
agencies, four different agencies in trying to identify all the
potential roles for federal government in advancing PHR adoption and
really specifying what they are and categorizing them and then
specifying what they are and ranking them according to some criteria
we\'ve all agreed on. We\'ll be hearing testimony on that on
September 18th. We also expect to hear from Paul Tang and others on
incentives that could accelerate adoption. And we also, as I mentioned
before, expect the Intel MIT meeting on PHRs in October to generate some
helpful information and cover the open source issue that we\'ve touched
on in previous meetings. And also we\'ll hear the final testimony on the
environmental scan. I think we\'ll have different testimonies, both on
November 6 and in our first January meeting we have yet to set.

So the recommendation process there would lead us into the first quarter
of next year, and then we will most likely present recommendations on
that area on April 24th, but I want to point out that this really is a
draft, and we really wanted your input on what you think about
feasibility and the content and the time lines, and we are not at all
bound to these dates on when we have to present recommendations over the
next six to 12 months. So if you can give us input on what you think,
what kind of time frames do we need to allow for to more thoroughly
investigate these issues, it would be very helpful and we\'re also
finalizing the AHIC agendas for 2007, if you feel we need more time for
some of these issues we can make sure we try to include time on agendas
in the latter part of 2007, for example, if we want that time. And I
think it may be a little bit difficult for us to speculate at this point
in time exactly how much time we\'re going to need for issues like
health literacy or business models, when there\'s a lot of evolving
concepts. And there might be some short‑term actionable recommendations
that could be very important and worthy of introducing over the next six
months, but there will be other things we\'ll need more time, we won\'t
know we need more time until we get into them. So with that I\'ll just
open it up for anyone who would like to comment or offer suggestions on
how to change this or make it better.

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

We would like your thoughts about this, this will guide us as we move
forward. And if you have ideas about some parts of it being practical or
impractical, this would be a good moment to speak up. They think you
have it perfect, Kelly.

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

I don\'t know if I have it perfect. It could be the printing is too
small.

(Laughter)

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

We all need glasses.

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

Say again?

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

I think it\'s a great agenda. It\'s a show I don\'t want to miss.

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

Kelly, when would you need comments back if we wanted to get feedback on
the dates or anything?

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

Well, it\'s a living document. We\'ll make changes throughout the next
year. So whenever you have time I guess is probably ‑‑

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

Please send an e‑mail to me Kathleen Fife, and I\'ll put it in the work
plan or have it as a discussion item at a subsequent meeting.

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

As things develop we may see places where a need develops.

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

If anyone has any real concern with the time lines on the
recommendations in particular, try to let us know sooner rather than
later, just because we will need to make sure we plan the AHIC agendas
for 2007 appropriately.

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

We have a section on our agenda here for public input. Kelly, how do we?

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

There\'s going to be a phone number up on the webcast for members of the
public to call in and make a comment if there are members who have
already dialed into the call, they only need to press star 1 on your
phone. If you do get anyone it takes a few moments to get through the
operator. If you want to go ahead with the summary of the action items,
you can do that while we wait for people to call in and I\'ll let you
know if we get anyone.

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

Thank you very much. So we have, so in terms of action items, we have a
little bit of work to do on the ranking that we developed over the
course of our discussion of ranking and functional needs for PHRs.
Kathleen or, do we want to review that to make sure we\'ve captured it
all?

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

I have a number of notes here. First of all the two categories that
we\'re going to add to the ranking are administrative items and also
outcomes. In addition, we\'d like to receive the ranking document from
other members of the work group, only about a third of work group
members have responded to the ranking document. So we\'d like to hear
from the rest of you if possible by close of business on Monday
September 11th.

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

I guess since we\'ve said we are going to add some functional categories
here, I guess a question is whether we want to, that was the original
plan, but perhaps we want to do our reshaping of these categories and
then we want to punish the people who got their rankings in early by
making them do it again.

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

No good deed goes unpunished.

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

That\'s right. So we apologize. But this was, you know, iterative
processes are like this. So I think this will be more helpful, actually.
Did we think we might have a week or so to do that, this whole next week
to get these rankings in, because we\'re going to get some information
in from Lorraine as well.

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

I really can\'t do it next week. We have out of town business and board
and committee meetings and so it will have to proceed without some
input. Maybe Mark here can do it, I don\'t know.

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

We\'ll do our best, we\'ll follow up with Lorraine, try to add the
criteria she mentioned from the other work that\'s gone on in this area
since that seems very specific and make sure, we\'ll try to get it back
out to everybody very quickly with I guess the two additional categories
we talked about. But if it\'s possible we were hoping to get responses
back by next Thursday to allow us enough time to synthesize the results
and get it back to you in advance of the 18th.

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

And could we please clarify how you would like the results displayed.
There were comments early on in the conference call.

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

I think we would like to see them as they are, I mean the totals and
averages are good, but we actually would like to see them as we rank
them. So if you could give us the chart kind of as it stands with
rankings, you might just lay them out in order. But it would be useful
to see if those come out differently.

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

Will do.

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

Thanks.

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

Doesn\'t look like we have public comments and there\'s an e‑mail
address you can submit comments. But nobody is calling in today.

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

We\'re always happy to take public comment and interest. And let\'s see
so that takes care of the functional needs in terms of the work group
work plan, if there are comments or additions, corrections thoughts, if
you can get those to Kathleen, then she\'ll make sure that we take them
into account.

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

Rose Marie, someone just called in. Do you want to take a comment now?

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

Sure.

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

Joseph Conn.

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

Thanks for taking my call. Couple of things what would be helpful to
cover these things is if the

things that you\'re seeing, the documents that you\'re seeing, this
ranking schedule and what have you are posted on the web under the
section four documents, for these meetings in advance so that we could
at least follow along. Basically all I get viewing from the outside is a
meeting agenda. And it\'s also very difficult to find out who is
talking. And at one time there was posted a list of who was on the call.
And I don\'t see that function on this particular call, but I know on
previous ones, with the committee, activities and work groups, there was
a function where you could tab up and see who is on the call at least
you could get the spellings of people\'s names correctly and that sort
of thing. So just as a function. We\'re just flying blind here listening
to what is going on. Some folks are good about saying this is Kelly or
whatever, but others, you know, you get the dialogue going and you
can\'t follow.

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

Okay. We will, good point that we should try to identify ourselves as we
get into the second hour. This is Rose Marie, by the way. We forget to
identify ourselves. So that\'s a good point.

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

The list of the committee members are posted so I have a copy of them
but there are a number on staff and others who are participating and who
are not members of the committee and I have no clue as to who is talking
or making what suggestions.

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

That is a good point and something that we can deal with going forward.
Appreciate the input.

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

Thank you. One thing, is somebody, will somebody be able to e‑mail me
copies of the documents you folks are seeing? That you have in front of
you today?

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

And I might just add that one reason we, that the information that about
rankings and such has been coming, in fact as you may have heard from
the conversation, we\'ve not yet completed it all, so there wasn\'t a
final, any sort of finished product from this point. Kelly, Kathleen, I
don\'t know.

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

Is there a problem with ‑‑

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

I can answer that, sir, if you\'re following along on the webcast and
you do see the e‑mail address that\'s up there on the public input
slide. Send an e‑mail to that and I\'ll give you instructions on where
to find all the documents that are posted on the Web site. If it\'s a
case that something is still being worked on at the date of the work
group meeting, I can let you know when it will be available and when you
can download a copy for yourself.

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

I\'m saying I went to the consumer empowerment web page and looked under
the documents, and there\'s nothing there for this meeting. There\'s the
archives for the previous meetings, but nothing there for this meeting.
Unless I missed it.

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

I think that was just in this case because the documents were finalized
pretty close to the actual date of the meeting. So they weren\'t up
there. They\'ll certainly be in the archive section very shortly, and
you\'ll be able to look at them all and listen to an audio archive of
the meeting if you\'d like to.

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

I appreciate that. But my point is it still makes you, it leaves anybody
not just me in the media, but anybody who wants to see what you guys are
doing or talking about, just we\'re just flying blind because we don\'t
see any of the things, any of the documents you all are referring to.
It\'s just difficult. And I appreciate that you have a heavy workload
and it\'s hard to get this stuff churned out and posted. But you know it
just makes things impossible for anybody out in the community to follow
what you\'re doing.

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

I have to agree. I think we want to be as absolutely transparent as
possible, and also you know do it in a way that we get as much input as
possible.

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

I would say this is the first meeting we\'re discussing the ranking and
we\'ll certainly have another discussion September 18th and we\'ll also
have a final version of the ranking document available to the public. It
will be posted on the Web site in advance of the meeting. And that will
be a final document. Our deliberations today were preliminary. And we
are doing everything open to the public and ‑‑

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

You\'ll send me a copy of your preliminary rankings then?

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

Whenever we finish our preliminary ranking.

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

I don\'t want to see the finished document. I wasn\'t able to see what
you\'re talking about now. See, the thing is you\'re not transparent if
you\'re not showing us what you\'re deliberating now. You\'re actually
making deliberations on rankings. I can\'t see them. You know, nobody
can see them. So how is that transparent? Do you hear what I\'m saying?

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

Since this is a public meeting we\'d be happy to talk to you off line.

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

This is the avenue that I have to make a public comment. You know? I\'d
like to see what you\'re talking about and you\'re discussing other than
just a bullet item agenda. I\'d like to see the working documents, all
of the materials, the letters, and the correspondence that\'s coming
before the committee. I\'d like to see that as it\'s being discussed,
and the best way to do that is to post‑it on the web. That\'s my
comment. Thank you.

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

Thanks very much.

Okay. Any other public input called in?

(No response.)

Hearing none, I think we\'ve summarized our action items. Any other
comments, any other business, comments by the work group?

(No response.)

If not, can we have a motion for adjournment?

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

I so move.

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

Second?

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

Second, Lorraine.

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

All in favor.

(Whereupon a motion was made, seconded, and passed unanimously.)

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

Thank you very much. We\'ll see you on the 18th.