American Health Information Community

Consumer Empowerment Workgroup Meeting

November 6, 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.*

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

Okay, Judy, you can go ahead.

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

Good afternoon, everybody and welcome to the 11th meeting of the
Consumer Empowerment Workgroup. And this is just a reminder to tell you
that these meetings are designed to meet the requirements of the Federal
Advisory Committee Act, which means that we\'re operating in the public
domain. These meetings have been publicized in the *Federal Register*
and will be broadcast over the Internet, recorded and transcribed. So
Workgroup members, as you speak, please remember to speak clearly and
identify yourself for the transcribers.

We will have an opportunity for the public to present comments at the
end of the meeting, and with that, let\'s just turn it over to you,
Matt. You can introduce who is on the phone and then we\'ll have people
in the room introduce themselves here.

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

Okay. On the phone today Susan McAndrew from the Office for Civil
Rights. Elisa Moody from Microsoft. Kim Nazi from VA. Jason Bonander
from CDC. Tim Cromwell is also on from the VA. J.P. Little from RxHub.
Mike Kaszynski from OPM. Our Co-chair Rose Marie Robertson from the
American Heart Association. And Myrl Weinberg from the National Health
Council.

Anybody else who we\'ve missed on the phone?

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

Nancy Nielsen from the AMA.

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

Okay, Judy. I think that does it.

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

Okay. Do you have anything to say about the procedures?

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

No, just to echo what you said. Please, everybody, introduce yourself
before you make any comments. And speak up clearly so that everybody
following along on the phone and Web can hear and then when you\'re not
speaking, please keep your phone muted on your own end.

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

Okay. We\'ll go around the table.

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

David Lansky.

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

Justine Handelman from \--

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

Ross Martin from Pfizer.

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

Stanley Chin.

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

Christina Collins, AMA.

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

Stefanie Fenton, Intuit.

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

CMS.

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

Lorraine Doo, CMS.

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

And Kelly Cronin, ONC.

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

(indiscernible).

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

Thank you. And today we have Rose Marie Robertson as one of the
Co-chairs and unfortunately Nancy Davenport Ennis is traveling. So we
have (indiscernible) acting Co-chair.

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

Does Rose Marie want to go ahead?

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

I\'d be happy to make a few opening remarks and since you\'re in the
room, I\'d be happy to have you shepherd us through the agenda.

Just want to first of all apologize for not being there in person. It\'s
the week of our major meetings and not a time I could change my travel
schedule.

One of the things we need to do is to accept as a group the meeting
summary that was sent to you. And actually it might be easier for you to
do that there in the room to get approval of that. But I\'d ask if there
were any comments or concerns.

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

Nobody is giving any indication of such.

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

All right. Well, good. So can we have a motion for the approval of the
meeting summary?

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

Move approval.

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

Second?

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

Second.

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

Okay. All in favor?

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

Aye.

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

All right. Very good. Let me then let you carry on from the room there
with the presentations and I\'ll just be a member here on the phone.

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

So this is Ross Martin. Unless there\'s any objection, we can just go in
the order the presentations are listed here. Does anybody have any
issues with doing it any other way? We\'ve got Karen going first, and
then we\'ll have CMS and the recommendations from the (indiscernible)
conference and then from Intuit. Does that work for everybody? Great.
Take it away.

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

It\'s a little quiet, the line coming from ONC. Can we make sure who is
presenting, gets close to a microphone so we can hear over the Internet?

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

My voice isn\'t working very well today.

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

Okay.

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

Okay. I\'ll use this is a test signal. Can you hear me through the line
at this point?

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

Yeah, I think that sounds good.

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

This is Stanley Chin, I\'m the Director of Practice Development for
Altarum Institute. We are under contract to ONC to carry out an initial
scan of the personal health record market. I checked the calendar on
this morning, it seems longer but we started this on September 1, and
delivered our preliminary report on October 31, so we had actual exactly
2 months to carry out this work.

But I want to talk about today on methods, our initial findings, and
then open up for discussion and questions.

The first slide \-- slide control or do I \--

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

There we go, sometimes \--

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

Okay. Just to note that our contract was to review the PHR market and
reiterate this is a market scan, not a scientific survey. So we\'ll talk
about methods and what that means for the finding.

That in Phase 1, our goal is to contact as many vendors as possible as
part of the AHIC \-- Consumer Empowerment Workgroup. So invite the
public participation. This is primarily unstructured data collection.

Then in order to gather more structured data, we created three specialty
subgroups of nine particular vendors, to ask specific targeted questions
and get specific responses on those areas of focus.

Part of the tasking under this contract also includes consumer focus
groups, that\'s not yet under way but planned in the next month, as well
as studying interoperability and connectivity, which is our next phase
for this work. We can talk about next steps as well.

The next slide talks about the sampling design, again I\'m using
sampling, it\'s like sampling. We went out and looked, gathered
everything we could, and we started with the PHR Web site to come up
with initial vendors, we came up with 89. We attempted to reach everyone
in that frame, beginning on September 17 and we didn\'t close out until
October 28.

The first finding is actually on the third bullet point, the 13 vendors
who identified as no longer in the business, no longer in business at
all, and/or no longer producing a PHR. So, about 15 percent. You\'ll see
a slide on that.

Of the 76 remaining active vendors, we did get participation from 24 and
from additional 49 vendors we were able to pull information from Web
site. We feel we have fairly good information on some \-- along some
axes of interest and somewhat less on others.

One point about this, as you look at the data it\'s quite tempting to
line them up against each other and look for statistical significance in
groups. I hesitate doing that. We don\'t really know the sampling
properties of the data. We know what we know given the respondents, but
we don\'t know the relationship of the respondent pool to the true
universe. That\'s unknowable, since we don\'t have a census to start
with. So statistical properties of the data, are simply unknowable. So
we can look at them, you can do some comparison, you can think about
what they might mean. But in statistical inches is not possible with
these kinds of data. True for any nonrandom sampling or nonrandom
accumulation from random sample.

So don\'t want to hit that too hard but it is tempting to try to look
for significance and I hesitate using that.

I\'m not going to talk too much about the flowcharts. The next slide,
slide 4, shows a phase part of Phase I. And the process we went through
show we had response from all those we contacted. Repeat calls and so on
that we did.

Slide 5 shows a pie chart breakdown of the response to the data
collection activity, and you can see 15 percent are no longer in
business. Now, so again, sort of first initial finding, we know the
market is in flux. But this is a strong indication that based on that
initial pool that you know, almost one-sixth are no longer in business.
So a high degree of turnover.

Okay. The next slide talks a little about what we did on \-- we talked
about Phase I, went out and tried to get information from everyone,
Phase II we took a much smaller core group of people. Panels,
essentially, and listed specific responses across three domains.
Functionality, the business model and the Confidentiality Privacy and
Security.

And then the next slide shows the flowchart of process we used in Phase
II to elicit and assure we got responses back from everyone we
contacted.

Okay. So that\'s process. Let\'s talk about what we found. Slide 9 shows
overall topology we settled on. Now, this is just based on the data, not
based on any theoretical foundation. We came one these three categories.
Stand-alone, depending solely on patient input. We use the word tethered
here to mean provides access to one or more data systems. It\'s not
independent and it doesn\'t allow the ability to write back into those
data systems. Integrated we use to mean something that had data ability,
to contact and update data in a remote system. That\'s our definition
that we use consistently throughout this document, again it may or may
not be consistent with what your own thinking is on this, but that\'s
the way we\'ve used the terms consistently.

Questions on that, by the way? In terms of architecture? Okay. Slide 10
is our next finding. This is that of those responding, of those that
participated in our pool, of those 76, 55 or 72 percent of them are
identified as stand-alone products. Seven percent, 5 of them are
identified as tethered and 21 percent, 16 of them are identified as
integrated. So again, given the source of the data, given the response
and so on, this is our first finding which is that overwhelming majority
of the PHRs that we looked at were stand-alone.

Okay. Then of the \-- of that topology, of the stand-alone with the
techniques, you can see slightly over half were Web based, online. A
third were based on portable or PC-based based on smart card, USB or
other sort of data device and eight of them are characterized as being
paper.

Which has implications for the end as we look at interconnectivity.

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

A question about the three architecture types. If an integrated one
allows for patient input, that\'s token (indiscernible) integrated tool,
you looked at their predominant or exist \-- existence of capability of
importing information and integrated \--

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

Yeah, if it were \-- if it could take data directly as opposed to
here\'s a file of data and you have to type it in yourself, could take a
direct data feed into another database, then we\'d count it as
integrated and it could then \-- there\'s a little bit of fuzzy gray
area in that.

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

There should be some overlap, you would think and there could be \--

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

There could be. We didn\'t \-- we believe we have crisp separation
between the groups now but clearly there\'s a fuzzy separation depending
upon \-- I don\'t need to tell this group, the definitions are fuzzy,
around the whole conceptual framework of PHR. And we did our best to
identify what that meant as PHR and in terms of functions. But if it
could take data directly in and then presumably pipe data back out
again, then that\'s \--

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

If you have a system that was \-- that would otherwise have been
tethered, say that it was from a physician office or whatever sort of an
employer whatever, and the patient could \-- were able to enter data,
would that then move that \-- where would you have taken that kind of
\-- where would you have placed that sort of system?

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

You would have put that in the integrated category.

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

Okay. Even if it was just one if there weren\'t multiple integrated but
it was the patient and the system. And were there many of those?

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

I don\'t actually have that number off the top of my head. I don\'t
believe there were. But I\'d have to look at the question to review on
the data.

Slide 12 appears to be a duplicate, is that correct?

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

Is the Web base on line, and PC \--

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

Mutually exclusive?

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

In this case, they are because there\'s only one \-- you can sort of
identify that.

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

This is Lorraine. If I could just two quick just to help me for
perspective. Of the 49 that didn\'t participate in the conversational
survey but you looked up information, was there a reason they didn\'t
participate or you only elected to talk to 24?

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

It\'s hard to gauge no response. But for whatever reason, either we had
the wrong contact information and they \-- it\'s hard to gauge \--

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

Okay, and the source of the list, just wanted to \-- was just the
(indiscernible) my PHR?

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

We began with that but it was supplemented by conversations as we
entered into the field. Conversations with PHR VA and ONC.

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

Okay.

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

And other vendors.

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

I know that list is not necessarily maintained but I wasn\'t sure \--

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

Precisely. That was an initial concern of ours and again a finding is
strictly from that, it\'s not.

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

Okay.

**[\>\>\
]{.underline}**That\'s actually interesting in and of itself. The
failure rate sort of what\'s the time frame associated with that. It\'s
probably a year, year and a half time frame in which that kind of
turnover. It\'s kind of interesting to extrapolate that forward,
half-life of a PHR. Lifelong record, having the half-life of 6 years is
potentially problematic.

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

Thank you.

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

Okay. Okay. Very quickly to slide 12. And then we can talk about
functionality. Slide 13, breaks then down from the high level of sort of
organizational \-- the (indiscernible) engineering part to business
function that PHR supports. These slides, 13, which you may want to just
tear and hold on for a second, describe the definitions of the
functional groupings we\'ve used. Scheduling, ability to track,
deductibilities and copays. I\'m not going to go down the list in detail
because that would consume a considerable amount of time. As we look
across different kinds of architecture, we see different focuses and
different types of overall organizational forum.

So slide 14 is the overall across all the data points we have, you can
see 66, part is because the Web gathering exercise proved particularly
fruitful in functionality less so than business model, and security so
we have fairly good. And you can see overall 53 percent showing patient
educational information, 50 percent patient outcomes, and then a very
quick drop-off towards the other categories.

When we break that out across different domains in terms of stand-alone
tethered and so on, when we look at slide 15 \--

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

Can I ask a quick question on the patient outcome?

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

Uh-huh.

**[\>\>\
]{.underline}**According to the definition it talks about self-reported
outcome such as drug reactions and like condition improving. And you\'re
saying that 50 percent of them had that kind of information in their
PHR?

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

Yes.

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

Are they the ability to record that information?

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

The ability to record the information.

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

Okay, I see what you\'re saying. Not necessarily report it to anybody?

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

Yes.

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

Okay.

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

The discharge instruction part is low, it\'s not a surprise, but I heard
the Quality Workgroup, was very interested in that. That they felt that
was a high \-- there was a high value to that from consumers, for
consumers.

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

And it may not be present yet.

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

Right, absolutely.

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

And again, this is Lorraine. On the stand-alone PHR functionality, which
is the self-entry, it indicates that 4 percent have prescription
refills. And \--

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

We don\'t really know what that means. There are \-- the odd one and
two, you\'ll see another one later on that they claimed also to support
e-mail. We don\'t exactly know what that means in some of these cases.
They are self-reported data from the vendor, so how they\'re loosely
interpreting the concept \--

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

I can answer with one model I know of where it\'s a byproduct of the
fact that they\'ve got a lot of physician fax numbers, and so it\'s a
place you can request an appointment, request a refill, and they know
how to \-- excuse me. They know how to send to right to a physician and
then from there they get the physician to register and then they can do
it on line if they want.

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

Interesting.

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

And these are no standards whatsoever but a proprietary function.

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

Question also came, the 50 percent of the integrated applications having
patient outcomes, given the definition of patient outcomes, didn\'t seem
like 50 percent.

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

Yeah.

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

By definition don\'t have patient contact information.

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

The integrated ones could have. There\'s no preventing the integrated or
the tethered from containing patient self-entered data. There\'s no
constraint that way. It\'s going the other direction. So it\'s possible.
One of the functions of being integrated could well be \--

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

Your definition of tethered, it only had read-only access.

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

Yeah, it\'s one of those \-- are you writing into a physician\'s
database or storing it locally. If you\'re writing into the database, we
would have called it integrated. If you\'re storing it locally, we would
have called it tethered. If it\'s \-- you\'re not modifying anybody
else\'s data. But you may be \-- maybe still able to record that.

The fuzziness is across categories. It\'s just a function of the
technology, I think. So you can see, so slide 15 talks about on
stand-alone, you can see there\'s a couple of oddities, including the 4
percent that say they can do prescription refill. At least the validity
check, none of them say they can do appointment scheduling. So it seems
to be a validity of construct here. And none show discharge
instructions, which is kind of interesting, presumably could enter in
those yourself. Okay, that\'s sort of interesting about that.

The next slide 16, caution for the tethered PHRs, but you can see, all
five showed patient educational information. And none show discharge
instructions or presented in multiple languages. So that\'s interesting,
I again don\'t understand why they wouldn\'t be able to show discharge
instructions. And you can see then across sort of a 40--60 percent
across.

For the 17, when we looked at integrated PHR functionality, a little
better end, less noise in the data. And you can see the largest here,
patient reminders, on line communication ability, and patient education
information, which again comports with the idea of being integrated
system. And again, 44 percent here showing Rx prescription refill,
(indiscernible) to view multiple samples and 13 percent showing
(indiscernible) functions.

Interesting, very little multiple language support. We didn\'t go into
very much depth about patient education information, about health
literacy and so on. Did not really investigate those questions. That\'s
an item \--

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

This is Ross. I have a question about the patient reminders. Your
definition says reminders for wellness checkups, et cetera. I\'m
assuming by the results that that means that these are not director from
the clinician but generated by system, line 45 it\'s time for my
colonoscopy, just because I\'m 45, not because my doctor says so.

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

Business rule. That\'s the way we intended the question to be read.

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

Okay.

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

Can\'t speak to interpretation.

Okay, so slide 17. That\'s the overall business functions. Slide 18,
then gets us one level deeper. This is to look at the data elements
actually contained in the PHRs. Again, you might want to hang on to
slide 18 for a moment. You can see the definitions here for the kinds of
data element. And (indiscernible) captured within a PHR from advanced
directive through procedure history.

There\'s three more. Provider list, radiology results and systemic
scores which fell off this slide. I apologize for that.

Radiology results is fairly straightforward. Symptomatic scores were
individuals putting in specific pain score, those kinds of other
activities of daily living. Those sorts of item-based results.

Provider lists. Brain lock, I don\'t recall the definition for provider
list. And I don\'t have it on my slide. So we\'ll come back to that
point.

So slide 19 shows all across all architecture types, the data types that
are available. And this is a very \-- varying patient slide. I don\'t
apologize because it\'s findings, there are a lot of interesting things
covered within the PHRs as they stand. And there\'s enough information,
I think, in these slides plus the discussions I think could spark quite
a bit of interesting discussion.

Overall, you can see that there are a handful of things that really
stand out as being covered well. Medication history data, allergy
history, condition history. And \--

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

The second \-- so the second bar under each one, the advanced directive
as a 27 percent and then a 84 percent, what\'s the \--

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

No, maybe just the way you\'re reading it. Twenty-seven percent is
advanced directive. Eighty-four percent is allergy history.

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

(indiscernible).

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

For those on the Web \-- I apologize. The Web version still has an every
other label. So let me take a moment \-- okay.

So there\'s \-- so there should be a second version available to you. If
not, let me just very quickly \-- they align exactly \-- except the last
three which dropped off. What\'s on slide 18, advanced directive,
allergy history, history, demographic, encounter, family, pretax home
monitor, immunization history, insurance information, laboratory
results, lifestyle, behavioral data. Medication history, procedure
history. Provider list, radiology results, symptomatic scores. And
that\'s what was supposed to be slide 18. I apologize for the drop-off.

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

(indiscernible) was there any designation made \-- whether the data type
elements \-- excuse me. Were \--

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

Let \-- let\'s dive into the next slide and you can see where they\'re
coming from. And then there\'s \-- that\'s an interesting question. Just
by itself in terms of source of all these data. You look at slide 20,
which is types of data available for the stand-alone system, knowing
that these are all self-reported data, essentially, they\'re hand typed,
either from something given by a physician or simply \-- you can see 91
percent show medication history. Eighty-five percent show allergy
history. And these would all then be self-reported.

You can see very few support symptomatic scores, rather few support
advanced directives or living will. And strangely, it may just be a
matter of interpretation by the respondents but 35, 36 percent showed
free text documentation ability on stand-alone. We don\'t know how to
interpret that. And then sort of in between in the middle, laboratory
results at 60 percent. Insurance information is 55 percent. A couple
standouts in terms of what\'s available among most if not all and a
couple standouts in terms of what\'s not widely available. That\'s in
stand-alones.

Slide 21 shows the tethered \-- and a \-- and you can see all of them
show medication history, procedure history, laboratory results, and
encounter history. So again top to bottom, encounter history, laboratory
results, medication history and procedure history, all show 100 percent.
From top to bottom. Allergy, condition history, and home monitor data
show 80 percent as data elements contained. Whether or not these are
filled is another question. They are contained in the system.

And again, these will be a combination for these \-- run record from
(indiscernible). Other interesting things, zero have advanced directive
living will. Symptomatic scores if you think about pain being a vital
sign, it is pretty awful.

So okay. Slide 22, is then the integrated systems, again better end list
noise in the data. And you can see \--

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

(indiscernible).

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

Overwhelming data for medication history, procedure history and
condition history.

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

This is tethered systems, 22? Isn\'t it? Twenty-two is integrated.

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

Twenty-two \-- 21 is tethered. Twenty-two is integrated.

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

In our labeling, 21 is stand-alone, 22 is tethered.

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

Are we looking at the same slide set?

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

Apologize for confusion.

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

There was a swap \--

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

There was a second version that came out from Michelle Murray, the
revised version came out on the 3rd at 5:59 p.m. is when it came into my
mailbox. There\'s a newer version of it, should be in your in-box.

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

I believe we just rearranged the order, not the content. So you will and
the slides should be available to you.

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

And it would be integrated, stand-alone and tethered.

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

It\'s also available on the Web site now, too, as we go through.

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

I don\'t have that address.

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

We\'ll forward it to you again, Paul.

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

Okay.

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

Slide 22 again, integrated and you can see the range of functionality is
quite high. Again, at least construct validity. It should have the most
data elements in it and they should be the best populated. So at that
level we can see medication history, procedure history, condition
history, all 94 percent, demographic data, encounter history,
immunization history, all 88 percent. And again, very low values for
advanced directive, living will and symptomatic.

A lot of information here, a lot of things we\'re chewing over in terms
of what data are being captured by whom.

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

Okay. So because the next section is actually of the data we have, this
is almost unique in terms of what we\'re able to capture. There are some
weakness, I\'ll talk about those in a minute. Slide 23 shows which
markets were targeted. By the vendor. You could target more than one. So
these don\'t sum to 75. But 65 are directed to consumers, and then
there\'s extremely large falloff to who else it\'s directly marketed to,
insurance companies, employers and providers, all the next group.

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

And presumably you\'re sort of deducing some of this information, since
it\'s 75 and you only have 24 that you talked to.

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

Well, it\'s a question of identification. We were able to \-- if we were
able to identify clearly from the Web site when they felt \-- when the
target market was. Yeah, it\'s a valid point. To the extent that we
think that we were able to make a clear determination, we made that. We
felt we couldn\'t, then left it blank. Then you can see again, slide 24
talks about a number of targets multiple markets. The issue of targeting
consumers is an interesting one, we can come back to that about \-- the
marketing may be directed to the consumer, the sale may actually be
directed at provider. Kind of interesting by itself as well.

Okay. So slide 25 is again our next sort of big finding. We attempted to
find out what the pricing models were for the PHR. We \-- made a lot of
promises keeping data confidential and you can see a lot of people
didn\'t elect to provide information particularly on the number of
users, number of sales they had, so we have very little data on that.
And our data on the pricing is kind of smeared a bit. And that\'s okay,
but so of the respondents, we were able to identify a wide variety of
pricing models in which 28 percent are free to the consumer, 23 percent
have a one-time fee, 30 percent a yearly subscription and number we
couldn\'t identify, some kind of mixed model or subscription.

Two points worth interest, of the free to consumer, some slightly \--
one interesting business model I\'ll discuss which involved advertising.
Advertising PHR as a form of revenue generation. It doesn\'t necessarily
allay any fears that people weren\'t selling the data to make money.

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

No, wait, did you say nobody said that?

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

Correct.

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

Nobody claimed \--

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

Again \--

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

Primary business model was selling the patient data.

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

Well, but you only talked to 24. And the question is whether they \--
you asked whether they sold that or sold, quote, de-identified data. I
mean, did you explore all these things?

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

We did not as part of the secondary use of data was not something we
were directly brought \-- the broader question is what is your business
model, what\'s your source of revenue.

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

Okay, so I wanted to clarify that we actually don\'t have very good data
about whether people do have business models that involved the selling
of data.

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

That\'s correct.

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

The next question, the question was not asked directly.

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

That\'s an interesting question. Which I think would be worth.

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

But was there any probing on the advertising \-- as a means of
generating revenue, particularly for the Web-based applications? Because
I think there are \-- there has been some discussion about some other
emerging technologies where that is basis of their business model.

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

We knew that \-- I mean, a couple described that as a source of revenue.
We didn\'t get a lot of detail as to exactly how they were exploring
that marketing channel that is an interesting data question, the use of
direct marketing. I don\'t know, I don\'t have information right now.

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

If it's something as a workgroup we may want to note because of the
issues around commercial messaging, in an electronic environment, have
been addressed in part by MMA, as it pertained to drugs. But we may want
to just make a mental note to discuss that more fully as we get into
some of these issues.

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

Related to specifically to electronic prescribing of drugs.

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

That\'s right.

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

Yes.

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

(indiscernible).

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

We do specifically look for commercial messaging at the point of
prescribing \-- (indiscernible) that would be an issue for us, of
course. Yeah.

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

Right, but I think that beyond having maybe some network or vendor
specific certification processes or agreement that would modulate that
behavior, there isn\'t necessarily a lot of clarity on what the policies
are around that. So.

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

I think this would be an extremely important topic for this Workgroup
because we\'re talking about consumer empowerment but we need to be very
cognizant that quote the way we\'re talking about empowerment shouldn\'t
be burdened \-- we should understand how it would be burdened by any
influence over voices that consumers make. Either explicit or implicit
influences. Because I don\'t think we would want to be in a position of
having a \-- of widely advocating or having the Federal Government
widely advocate for devices that influence consumers in a way that
they\'re not aware of, or know how to qualify the information they\'re
getting in terms of influencing their choices.

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

I would imagine the biggest issue we\'re going to face with that is that
transparency over explicit prohibitions or if we want to empower
consumers, we know some consumers buy, you know, buy cable so they
don\'t have to watch commercials on the pay stations and some of them
choose to watch, you know, commercial television so they can see \--
that that\'s the exchange they\'re willing to make. And same with the
secondary use of data. It\'s much more about the transparency issues,
what imagine \-- excuse me. If we survey these vendors, what would be
really helpful to understand is that do they get any of their revenues
from secondary uses, which is probably very few of them, if any, do
right now. But the other question really is do they intend to at some
point, or are have they ruled that out, explicitly stated to their
clientele that they will never under any circumstances use their data
for anything else, I would imagine a lot of the ones that are free are
kind of keeping that as their future revenue stream potential. And then
again, it\'s the question of patients care enough about how it\'s used,
if they want a lot of control, if they see the value, it\'s my data, as
long as it\'s de-identified or whatever the rule they agree to, if
that\'s transparent, some will make the tradeoff. Some will never want
anybody to see anything and others will see it as a value.

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

Along with, that I think the consent should be informed. In other words,
your example of cable versus \-- buying cable versus allowing ads, is a
decision, but we need to let them know how having the ads in front of
you does influence it and does that make a difference one way or another
from a quality point of view or a cost point of view?

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

Exactly.

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

There\'s an AMEA white paper on secondary use of data that could be of
use to the Workgroup. We have to consider it\'s not only secondary use
of data behind the scenes, it\'s the use of data to influence user
experience. At the time you\'re looking at anything else.

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

The ad we didn\'t \-- too far into patient (indiscernible) so that
information will, and the transparency \-- (indiscernible).

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

To differentiate between a paid plug and unpaid one. Sort of like a
Google search where things that turn up \-- are paid responses.

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

Right.

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

Excuse me. This is Jodi Daniel. The consumer, does this \-- is this just
patients or all consume centers \-- does this include employers buying
PHR for patients?

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

Yeah, this is \--

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

Subject of the \--

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

No, actually I believe in this model the question we asked was whether
or not there was a fee to the end consumer. I\'m afraid that\'s a \--
can be a little hard to interpret. We intended it to mean end user
regardless of whether that person was a patient or provider, but I
can\'t speak for how that was interpreted.

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

Most of the employers outsource and they pay a fee, even though their
employees do not.

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

Right.

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

My guess you mean that \-- that appears as your free \--

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

Yes.

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

\-- free pie.

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

Yes.

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

As you can see, then, the varieties of one-time CD, are quite large, the
ranges here, chunks.

Shows all of them, almost all of them are under 100 dollars, they have a
one-time fee, kind of interesting. And slide 27, you can see the yearly
prescription fees are almost all 87 percent or under \$100, a number are
above that. The fact that a yearly subscription fee might be higher than
a one-time fee is interesting and have patients (indiscernible) believe
the amount of the market and the model for uptake and continued use,
structure.

Slide 28 shows a breakdown across multiple dimension. The type of fee,
and the overall architecture, stand-alone and tethered. The response we
have, stand-alone dominate the discussion and the data. But of the
tethered, for example, four of the five are identified as being free to
the end consumer. Seven of the integrated ones are identified as free to
the end consumer.

Which strengthened the point that this was interpreted by the
respondents to mean patient rather than whether any money changed hands.

Okay. Slide 29, then, talks about critical success factors. Which for
those that responded to this, we had 10 or 14 on. This the one that
spends the most, ease of use and then their ability to (indiscernible)
marketing.

Ease of patient use \-- ease of use of provider, scored very low. Ease
of use of patient and provider. Interesting.

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

Now, this is Lorraine. So of the 14, we don\'t know which of these are
represented, so whether \--

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

Most of those are going to be stand-alone, just again because of the way
the data are collected.

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

Okay.

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

Yeah, it\'s sort of consistent thread through. This you see most of them
are stand-alone, most of them \-- of those are Web based. The directly
targeted again to the consumer. Consistent with architecture and ease of
use to the patient again consistent with that architecture.

Okay. I don\'t want to spend too much time talking about the next
section, privacy and confidentiality. I don\'t want to fall too far down
the rabbit hole but we did ask questions about forms of privacy,
confidentiality and security were used. Slide 30 shows main categories
across query, whether they were role-based access. Emergency department
access, access by proxies. Differential access, different kinds of
individuals, again. Confidential \-- hang on that thought because we\'ll
see several that say they do. Privacy available to consumer, ability to
block view, restrict data and ability to separate sensitive data.

Slide 31 shows excluding the paper-based stand-alone PHRs, from whom we
have responses, total of 18. 94 percent, (indiscernible) and \-- said
they had a privacy policy available to the consumer. So that\'s \--
that\'s interesting and a little \-- but it may have to do with who is
doing the offering. Most of these are stand-alone, not HIPAA entities.

Anything else interesting on this? Forty-four percent showed role-based
access as well.

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

This is Nancy Nielsen from the AMA. I\'m curious about how few had the
separation of sensitive data, that certainly would run afoul of New York
State law.

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

I think the most important part, all the nonintegrated ones are not
HIPAA-covered organizations.

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

I don\'t know, they might be. It might be a health plan offering a
stand-alone tool.

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

Could be.

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

But probably not.

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

But when they offer that stand-alone tool, that activity is not HIPAA
covered.

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

But as a HIPAA-covered entity, and Jodi is the expert. Then our policies
should be covering what you\'re doing. Unless it\'s some other complete
different business, but I can\'t imagine one would separate that.

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

Agreed.

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

I\'m curious, this is Jodi Daniel, the comment made about the sensitive
data separation and problems under New York State law, it seems to me if
the patient is entering the data, then it\'s not clear why the State law
would be in effect on how the information is collected or shared. I was
curious if you have any more information on that comment.

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

This is Nancy again. Maybe I\'m misunderstanding it. I thought this
related to if a patient gave access to someone to view it. Was there an
area that \-- of sensitive information that was protected in a more
secure way? Under New York law, I mean, even if a patient of mine had a
HIV test, I can\'t even, without specific written consent to release HIV
information, I couldn\'t \-- the question \-- I guess the question is
who is controlling this record. And if the patient\'s controlling it,
then the patient can give that information out. But maybe I\'m
misunderstanding the slide.

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

I think you\'ve hit upon actually the key issue that\'s unresolved, the
finding in this, that issue of ownership and then (indiscernible) if to
the data are not well resolved in the market. I think that\'s quite
clear.

And in fact that would be sort of the \-- there\'s some discussion about
the security, slide 32. Use of encryption, use of audit trails and so
on. Again, I don\'t want it dwell on this except to note that all of
them say they have a security policy.

Slide 33. Almost all have said they\'ve used user authentication. I
don\'t know why that doesn\'t authenticate a user. How do I interpret
that? I\'d like to think they\'re just errors in entry.

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

Something that\'s totally stand-alone, that is just a tool, an
organizational tool given they may not have \-- they may leave it to the
user to have password protected or could be just a glorified Excel
spreadsheet.

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

Certainly could be, or a form basically that they\'re writing on to a
\-- to a Web site or \-- and then you can see physical separation, 83
percent show encryption. 61 show a log or audit trail which again many
of these are stand-alone, you\'d still like, I would think, to know
provision history. And so on. I\'ll answer questions. Are there
questions that people have about what we\'ve accomplished today?

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

Can you informally characterize whether the market leaders are in the
respondent group or not and to what extent are we hearing from a lot of
these people in their garage putting out product versus people with
significant sales in the market? From a policy development point of
view, how would we weight the answers in.

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

The answer is yes. The answer is yes, we do have the market leaders and
yes, there aren\'t that many of them and the predominant number of
answers, as you note simply anecdotally looking at the count, the people
\-- there are quite a large number of other vendors, with stand-alone
systems.

One of the questions we asked, which we had very poor response was how
many users do you have. We know that\'s a critical question and I would
love to have a way to weight the responses based on user base. Two
problems \-- I don\'t know, more than two problems. What do we mean by
user. Touch system, gave a memory stick to, belongs to a health plan,
has access to. This somebody who put in data 6 months ago but hasn\'t
looked at it versus somebody who uses it every day consistently. The
extent of engagement is actually the critical issue. And that\'s not
something that we were able to ask and I\'m not even sure what answer we
would have gotten if we were able to directly address that. What percent
of your users do you believe are consistently engaged in using this to
manage their health? And measuring. That\'s a critical question. And
your point of how do I know, since this is such an emerging immature
market, how do I know we aren\'t getting a lot of noise out of the
wannabes? But it\'s not clear the market leader today have a mature
solution either. There\'s a whole sidebar, as an emerging technology,
you\'re going to be looking right now, consumers who are early adopters,
who are going to be unlike in some ways the kind of people who will be
using the system a few years down the road, assuming it catches on at
all. That\'s a question of modeling and thinking about from a marketing
perspective and the people likely to grab it because early adopters will
grab for different reasons than those down the road. And something
mature and useful now might not be a later position in the market. Fully
mature market. All I can say is we\'re at a very early stage. But we did
feel we did get to the first part of your question, we did get what we
felt to be the major leaders. And you can think that what you like.

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

When you say we got the majority of your information was gleaned off of
Web pages rather than any kind of surveys or due diligence. We have to
keep that in mind, right?

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

Functionality, and the architecture ones, that\'s true. If you look at
the responses in some of the other domains, privacy and confidentiality,
as well as the business model, anything where the ends \-- when you see
these lower ends, typically those are from the detailed dive into the
data with the smaller panel. So those are based on responses. But again
that\'s self-reported data which we have no way to cross validate. So I
don\'t know how to respond to the question. Yes, we did glean from the
Web sites, we did rely on individuals taking honest assessments of their
system.

That\'s sort of nature of the beast from going after the data from this
direction and with this. It would have been nice, I can say like a lot
of things, it would be interesting. It would be very nice to do,
including questioning a pool of current PHR users and you know, lovely
to put them in a controlled \-- you know, you can think of all things
we\'d like to do. But to given time frame, confidentiality constraints,
I don\'t think that\'s \--

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

This is Jodi Daniel. On the privacy confidentiality and security
attributes, you say it includes paper-based PHR. That\'s not paper based
and stand-alone? The stand-alone ones that are paper based?

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

Yes, although \-- I believe.

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

Especially with electronic stand-alones.

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

Correct.

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

Okay, that was my question.

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

Yeah.

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

It seems to me, I find an issue I spent a lot of time thinking about, it
seems to me one of the noticeable pieces of data on this is the lack of
availability or transparency of the privacy and security policy to
consumers, particularly we\'re talking about potential for secondary use
and things like that. That not only \-- I mean, it gets to that question
of transparency, it\'s one thing to have a policy of saying we will or
will not share de-identified data or sell data or whatever else, but the
issue of not making that available is really sort of a big one, I think,
and one that\'s here or in the CPS \--

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

We did a poll, the facts that are attached to some of the portals as
well as the check boxes you have to go through to say I understand. And
there is a lack \-- just noted a lack of complete transparency. It\'s
not clear, for example \-- we had a question, for example, whether or
not \-- one question we went through the case was would I be compelled
to release this information to an insurance company if they requested my
health record? It was difficult to find cases where it was not allowed
or forbidden or stated in any way what your rights are. With that case.

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

To follow up on Jodi\'s point. I think wherever this goes, since our
charge is to take from a policy perspective, there are on the theory of
privacy and security issues, the value of the survey of (indiscernible)
to think about where is there opportunity to participate in policy
requirements. So we talked today about the secondary use,
commercialization, authentication issues. For example. As place where is
there may be some need for policy perspective. And I think we should
figure out a way to drill down some of those categories as they apply to
this and that goes back to my \-- what\'s real and what is not real. On
the one hand we don\'t really have a market model for our work that says
there may be let\'s say the wannabe category that needs to have some
sort of expectations or requirements that assure public protection.
There may be another category, very successful models there needs to be
an issue around transparency or some other protections to the public.
And we probably need at some point to think about a model for what is
our role in assessing and managing this marketplace. We don\'t have to
chase every single issue to its root. We have to think about the ones
that are really going to be salient to the public. Without \-- I think
that will be the next drill-down.

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

This is Tim Cromwell from the VA. I have a couple of questions. In your
document that\'s on the Web, the environmental scan, under consumer
view, you say that there is a need for additional search and one of the
areas you give is consumer views. And you list some things that could be
explored as opinions, expectations, value, and demand. From the
consumer\'s perspective. Do you see usability as another one of those
categories that can be reviewed or should be reviewed? And is there
anything you can say about usability from the patient perspective in
terms of these products that you\'ve reviewed?

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

I can\'t \-- I can\'t at this point. Phase II of this work is to carry
out consumer focus group activities to try and look at functionality
that matters to the consumers. The smaller \-- to consumers as well as
talk about usability issues. Based on the information we got, it was
again a vendor-supplied kind of information, but can\'t really answer
that. We \-- we chose not to ask the questions because we figured every
vendor would just tell us they were extremely usable and all consumer
friendliness. I don\'t have an answer, but yes it is important and yes,
we do hope to address some of that in the next phase.

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

Second question, are we going to be able to get at a list of products by
vendor that you looked at?

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

At this point no. Because many of these are one and two cells, that
would be fairly straightforward, identify which vendor we\'re talking
about. I don\'t know, I don\'t know how you want to handle the
confidentiality issue. We told the vendors that are participating that
we would hold all proprietary information confidential, and they then
indicated as the vendors would, their submission was proprietary, in its
entirety. So no, the short answer from my point of view is no. As
directed by government, of course we can try and figure out some way to
smear maybe identity.

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

I have a different comment, for our future work. The list of functions
and data elements. Seem to me to reflect bias, which is essentially a
medical institution bias and several functions that are attractive. I
think it\'s premature that the public will value in this marketplace or
rather there will be niche that is more or less desirable to and
somewhere along the way we should find out more about some of the
products like the \-- whether it was a well answer product which was
strong in health management, which is going object underrepresented in
some of these categories. So somehow we should find a way to care giving
issues, ADLs, health risk assessments. All that good stuff, chronic
disease health care. I don\'t know how we\'d capture whether the market
is responding adequately to that sort of need or the need is substantial
but should put it on our to-do list.

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

I couldn\'t agree more. That was one thing we found, this is \-- this is
describing the data elements we describe are pretty much those of an EHR
rather than a personal health record and to the extent there are
interesting things for example about diet and exercise. That would be
important for an individual. Not necessarily for the provider, but
certainly for the individual. Than PHR broadly constructed ought to
capture those things and ought to be a way to manage individual \--

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

Agree.

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

When I think about \-- this is Ross. When I think about the role that we
have, though, while I think it\'s important to understand what the
consumer wants in, that they may have less interoperability implications
than some of the more EHR-like functions that we\'d need to figure out
if that\'s an important thing, how is it going to talk to somebody else
opposed to now I\'m about to counter myself because some of the
consumer, more consumer focused things like connecting with my \-- in
honor of Tommy Thompson, the pedometer on my belt, it doesn\'t talk to
anything right now and maybe that would be a function I want in my PHR,
so there would need to be a device interoperability I continue as an
entity trying to work on those kinds of integration standards. So it is
a question how much do we want to focus on the things that are things we
can do something about, as recommending to the Federal Government, and
versus understanding the marketplace. That\'s a question, I think.

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

This is Lorraine. And you know, sort of at the risk of beating the dead
horse that I keep getting back on. The HL7 Workgroup is trying to work
on functional standard. In part, though, really with input from the
vendors \-- organizations on that workgroup, and that the focus group
with consumers, both users and nonusers is going to be critical to
information that process in anything else we do. So I think the next
step, if it is focus groups, assuming we were talking about OMB approval
and how we make that happen, is really going to be critical to our
success.

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

I would also say, though, that we can\'t put too much emphasis on to new
consumer groups, because what we\'ve summarized in previous meetings and
the literature is far more extensive than getting two focus groups done
in the next two months.

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

Agreed.

**[\>\>\
]{.underline}**So it\'s probably more worthwhile to go back to our high
level review of the literature. And trying to glean what we understand
consumers have expressed as valuable or meaningful to date.

Certainly that will \-- hopefully validate some of what\'s already been
reported in the literature and this is again a weak body of evidence,
but it is in qualitative research and probably be more, two more groups
to add on to.

**[\>\> Myrl Weinberg:\
]{.underline}**This is Myrl, and I want to also beat this dead horse, I
guess, and that is we all \-- we\'ve all talked about there has been a
lot of that has gone on to do some research around what the end user
consumer patient would value, and I think it doesn\'t matter if we\'re
talking about devices or interoperability or convenience, et cetera. It
is so critical to every effort to know what\'s important to the people.
Ultimately for a personal health record, and some people will have
devices they want it linked to and some will not be nearly that
sophisticated. And we are, as many know, we\'re going to be out soon in
a couple of States with AHIP, and the insurance plans and really
bringing together more patients and consumers to continue to look at
what works for them, what makes it user friendly, et cetera. So I do
think we need to scan the environment, gather every piece of data being
collected by others to add to whether or not there are another couple of
focus groups done.

**[\>\> Kelly Cronin:\
]{.underline}**Myrl, this is Kelly. When do you think you\'ll have some
early evaluation of that effort available, or will you be doing sort of
any real time program evaluation?

**[\>\>\
]{.underline}**Well, we will as we go along, but it has taken longer
than we would have hoped to get really up and running, and I think
we\'re going to do the big announcement in December and be out in the
couple of States at the local level and at work early next year.

**[\>\>\
]{.underline}**Okay, great. I also just wanted to let you know that
we\'ve been trying to work with Mark B. over the last two months, to
make sure that whatever is funded through the qualitative research
we\'re going to do under this contract that it\'s building off of the
work you\'ve already done. So a lot of efforts have been made to reach
out to him to make sure we\'re doing this on a collaborative basis.

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

And I appreciate that. Thanks.

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

This is Rose Marie, I would want to second Myrl\'s comments. I think and
Kelly it\'s good to hear that we\'ve got those, that we\'re trying to
coordinate those as much as possible.

**[\>\> Paul Tang:\
]{.underline}**This is Paul. And it may be worthwhile to \-- and I think
this is what Myrl is saying, to get feedback from folks already using
these products, because it\'s more like a try it, you\'ll like it kind
of service or product.

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

AMA, this is probably a top line issue and perhaps it does go without
saying but my understanding of the PHR has always been some of its value
does lie in the fact that it is going to be able to a tool for the
providers to use as well. I mean, you can have a fascinating and
wonderful history of what your blood pressure is or what drugs you\'ve
taken, but this may or may not be clinically relevant to the provider,
and so I would hope even as we\'re doing the focus group, there\'s also
some understanding or attention paid to truly valuable and useful things
within the health care context, if it\'s also information that the
provider can utilize as well. So where that fits in to the existing
discussion or what the literature review yields, I think it\'s a point
that bears discussion.

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

I\'m wondering, since it\'s 10 after now, we\'ve done a little over an
hour on this, if \-- are you able to stay for the \-- until 5:00, the
entire session? So I\'m wondering if it would be okay to go on to the
next two presentations before our break at 3:00, and then just resume
this conversation. We have more discussion after the break.

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

We\'ll go on to Lynn Crawford and Tim, I\'ll have the disclaimer that I
am \-- came as a mentor and peer and I trained and made \-- the program
there at the informatics program there to I\'m terribly biased about
what he has to say.

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

This is Will Crawford. Before we get into that category, are you
actually on the line?

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

Yes, I\'ve been on for quite some time. Good discussion.

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

So what we\'d like to do \-- again, this is William Crawford from CMS.
And along with Dr. Mantle (ph), I was the Co-chair of the personally
controlled health records infrastructure meeting held at Harvard Medical
School on October 10 and 11, 2006. This is my second time speaking to
the Consumer Empowerment Workgroup in a couple of months and once again
I\'m not speaking with my CMS hat on. I\'m speaking with my Harvard
Medical School personally controlled health records infrastructure
Co-chair hat on. One day I do hope to come and speak with the CMS hat,
but that day is unfortunately not today.

For my day job I do sit in the office of policy at CMS. Work on the
personal health record issues. And like Ross, my background stretches
back to Children\'s Hospital and the Informatics program there.

Next slide, please. So again just a little bit of summary about the
meeting. This was held on October 10 and 11 at Harvard medical school
and hosted by the HMS center for biomedical Informatics which is an
interdisciplinary group and Harvard Medical School that focuses on
biomedical informatics. What we tried to do was bring in a finite number
of people. A hundred people in attendance, and we sized the room so we
couldn\'t invite any more than that. Trying to represent a very wide set
of potential stakeholders. And we tried to focus the discussion on
particularly infrastructure for building personal health records. So the
underlying standards, technology, business issues, that would lead into
interoperable PHR world. A couple of people who were on this Workgroup
were present. David Lansky was there. As well as Lorraine Doo, my
colleague from CMS, and Michelle Murray from ONC and a number other
folks listening but maybe not on the call.

We did invite a hundred people. So that meant we couldn\'t invite
everybody but we did do our best to come up with a cross-section of both
major players, interested participants, and stakeholders in the personal
health records world. That includes providers, it included health
insurance plans, it included academic researchers, government agencies
and so on. And actually if we could have the next slide.

Before we go off this slide, I did put the Web site up there. We have
put most of the content from the Web site, including all of panel
presentations, as well as video of the keynotes by John H., and Mitch
who was the founder of (indiscernible) development and \-- are available
with streaming real video on the Web site and that\'s really available
to anyone who is interested. So you can go to www.pchr2006.org and watch
a lot of the plenary content from the meeting.

A couple of the participants up there. Again, we did try to get a broad
representation from both private sector, from government and from
research. Didn\'t actually get everyone up electronically, although
there is a full attendee list on the Web site. Specifically I should
probably apologize to Merck, Revolution Health and Medcom because I
didn\'t think to put their logos on when I was putting the slide
together. We did try again to bring in very senior people who were
involved in the (indiscernible) from Intuit also present, speaking next.
The \-- we did try to bring in people who were in senior decision making
roles in these organizations. Were thinking very actively and hard about
the permanent health record policies and what kind of businesses these
companies might enter. Again, we tried to cover \-- tried to cover
consumer product, we tried to cover technology companies, large
employers, Intel and Wal-Mart were there, wearing their large employer
hat. As well as both small and large Health IT companies. And
organizations like Markle, (indiscernible) Stanford, Robert Wood
Johnson, AAFP, HL7, the list goes on.

Next slide, please. Now, we just had a very nice quantitative discussion
and I\'m going to follow that with a very qualitative discussion. We
divided the conference up into three tracks, looking at largely the same
set of issues of how to we create a consumer focus personal health
infrastructure, but through a system of really three different lenses.
So a business model\'s approach, a sidle, ethical approach and technical
and standards approach. What Ken and I tried to do for this presentation
was to pick out six different themes that had cut across all three of
those tracks, and try to weave together areas where we saw a lot of
consensus coming out of the meeting itself.

And what we came up with were under the category first of personal
control with health records. We found there was consensus on a
definition what have that might mean. Under disruptive technologies, we
have some excellent insight that came from the keynote, some of the
discussions in the sidle track on open source technologies. With the
business model discussions. I think we\'re going it see that was a lot
of motherhood and apple pie there, but there are some very specific
points of agreement which bear repeating.

Data liquidity, the ability of individual patient to make wide use of
their own personal health information was a theme that came up several
times and came up from a variety of unexpected different sources so we
wanted to emphasize that. There was some very good discussion on the
potential relationship between personal health record and health
information exchanges.

And then finally, there was a lot of agreement on the technological
issues behind personal health record.

Next slide. So the PCHR. Throughout the conference we actually tried to
avoid the use PHR and tried to use the phrase PCHR, which is largely the
same thing, but with an emphasis on the patient control element. And we
actually had a surprising amount of up tick. We had one vendor who said
I don\'t care if you called at a time PCHR, I\'m going to keep calling
them PHRs and that\'s that. But people did at least for purposes of
discussion, adopt the term, and that did help us keep on target in terms
of what we were trying to talk to.

Two emphases on that. First of control is about a lot more than access.
It\'s been the ability to share data. It\'s about the ability to take
control of the privacy of your data. It\'s about having reliable access
to the data. So that if you don\'t have a 6-year half-life on a PHR
vendor. You can trust it will still be there.

We also decided that we didn\'t really like the term "tethered," and one
point the term "welded" was proposed as a replacement. And we thought
that was actually \-- and of course by saying we, I can\'t speak for all
100 people that were there, but a substantial subset of people felt that
was actually a reasonable representation of PHR data that is provided
through a portal into an EHR system to a particular provider. Tethered
creates the sense it\'s loosely attached and you can unhook from one EHR
to another. That\'s not really what we\'ve been seeing. We talked a bit
about welded PHRs.

The technical and standards track came up with what\'s on the slide.
Includes an irrevocable copy of all health record data. Subsequent
release of that copy is under patient control. That all data contributed
by the patient is subject to the same rules as data that might come in
from an EHR or from another source. And the technology is the enabler of
the rules of engagement for that personal health record. So
specifically, technology allows patients to make a statement and through
the trading relationship set up between the PHR provider and other care
providers, to make that statement about disposition of that record
stick.

So don\'t release outside of a referral relationship.

There\'s always a potential for malice, a potential for that someone in
the hospital will misbehave. But the technology should enforce the need
for that almost the need for that to be a malicious act as opposed to an
accidental or incidental act.

Next slide. A couple of top level concerns. That PCHR should enable a
single point of access to patients. So they have their \-- what Ken
calls their virtual medical home. That patients should be allowed to use
their PCHR to control data flows through a health information exchange.
I\'m going to talk a little more about that in a minute.

The PCHR should be a tool for establishing a line of communication with
patients. I think that\'s been a recurrent theme in this entire
Workgroup. And then most importantly, it should accommodate
unanticipated uses. This was a real theme particularly in the business
model discussion. That\'s actually why we called it an infrastructure
conference, because we wanted to really talk about the PHR as a platform
for innovation rather than just as a product.

Next slide, please. This is very quick, this is the motherhood and apple
pie slide. Consensus on a very straightforward point that I\'m going to
repeat anyway. To encourage personal health record adoption, consumers
need to have a compelling interest. Whether they\'re consumers, whether
they\'re patients, whether they\'re care givers, taking care of my
grandmother. We need to have a reason.

Those reasons break out into two categories. High order needs. I need to
take care of my wife\'s health. Not that I\'m married, but \-- or if I
need to have more convenience in my own health care practice. I need to
schedule appointments with physicians. And that may not actually be a
PHR function. It may be a convenience function that can be made
available without a personal health record or it could be made available
through a central medical home. So there\'s some discussion there. I
actually was in the doctor\'s office the other day, it was at Partners
Health Care up in Boston. They do have everything integrated so there\'s
no clipboard, and of course I was waiting 45 minutes to see my primary
provider and I miss the clipboard because it would have given me
something to do. Instead, I read practice management magazine.

The other category \--

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

Ninety-eight.

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

It was something 2002, I can \-- but then another category is economic
interest. And this is something that has not been addressed in nearly
the amount of detail. We keep telling patients and consumers that they
own their data. Some of them have come back and said, okay, I want to
profit off that, your fee, pharmaceutical companies are so interested or
the researchers are so interested in it. If there\'s value, I\'d like to
get some of that. And that could of course be a tremendous driver for
adoption.

Another point that came out of this discussion was that while we\'ve
talked a lot about work flows for PHR, we need to talk about what was
christened life flow for PHRs or PCHRs and I\'m actually not going to
talk about that because I think we\'ll hear about that in the next
presentation. But \-- next slide, please. We had an excellent keynote
speech from Mitch K. who was the founder of lotus development, the maker
of lotus \-- which was the original killer app for the ABMPC. Probably
more influential than anything else in driving the PC revolution, which
we\'re living in today.

Mitch is also the founder of the electronic frontier foundation, and
perhaps most importantly for this discussion, the Chairman of the
Mozilla Foundation, which oversees the development of the Firefox Web
browser so a lot of background integration and building of platforms and
networks. And there were a couple of points you can see his whole
keynote on the Web site but he talked about the transition from closed
systems to open systems. From hierarchical and centralized systems to
decentralized systems that are coordinated. That\'s part of the whole
ethos of the Internet, we have a lot of small pieces loosely joined, but
allow the composition of value from a very disparate baseline.

Part of that is the transition from islands of functionality, which is
very much what we have in health care today, to an interoperable system.
And I think what we\'ve begun to see here is there are a lot of areas
where interoperability can be achieved, and the consumers potentially
can lead some of that.

Two quotes from the talk. If open systems are matured, they dominate
closed systems. I think we\'ve seen that in the Internet. And then
finally, and this is perhaps a little bit more controversial, build it
and they will come. There will be unexpected entrepreneurial
opportunities. And I think you have to take that statement very, very
carefully. This does not mean build the edifice, build a massive
infrastructure that defines every single aspect of the PHR, the
interactions between the providers and the PHR. Instead, it means create
a platform that people can innovate on top of. Put the basic standards
into place, create the open system that people can innovate out from.

That\'s going to create opportunities for new business models that
sitting around this table we can brainstorm but can\'t come up with yet.
A lot we\'ll talk about, that be will be driven by the patient consumer
or provider community. People on the ground dealing with issues of
chronic disease or issues of their own health care.

Next slide, please. A good part of that is creating what we refer to as
liquid data. I hadn\'t used the term before myself but it came up in two
of the presentations, one from the \-- what one might think of as the
far left, from the open source, open systems group, and then another
from the far right, from a major established extremely large software
company that I\'m sure all of you are customers of. They both used the
same price.

What is liquid data? Data liquidity is just like asset liquidity or any
other kind of flexibility with your own resources. If you have data in a
form that you can share, that you can control, and that you can vouch
for, the authenticity of data is very important. If I have data about my
health signed by Brigham and Women\'s Hospital, that\'s much more
valuable than data I\'ve entered and signed on my own behalf. If I can
make that available to third parties to providers, to care givers,
that\'s much more useful than data that\'s locked up in an EHR. And a
lot of the discussion, particularly in the business models, track really
focused on how we could create increased data liquidity for consumers
and patients.

Next slide, please.

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

This is Davette Murray. Before you go to the next slide I had a question
about customers already perceive their medical information exists in a
liquid form. How did you establish that perception?

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

There have been a number of studies that \-- and of course I regret to
say I don\'t remember any of the sites off the top of my head. But there
have been a number of studies that have looked at consumers and have
done polling to find out what their perception of \-- the primary
question has been do you have an electronic health record? And most
people assume yes, when the answer is no. And we\'re actually just
talking about that before this meeting. And one theory that was
developed was people come into the office, they see the practice
management system, or they see the electronic billing system, they think
there\'s a computer in the doctor\'s office, therefore everything must
be interactive and everything must be shared.

It\'s become a consumer expectation because after seeing the level of
interoperability in every other aspects of their lives, they expect it
in health care and the fact that the data is in order of magnitude or
two or three more complex than what might be required for financial
management transaction, that\'s below the service. So I can certainly
try to dig out some more specific citations you may \-- (indiscernible)

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

Thank you.

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

So the underpinnings of data liquidity. Again, most of this slide came
out of the summary slides which were developed bit business models and
the societal models tracks. So this was the text here is the text that
the attendees actually came up with.

Control, as you would imagine from the name of the conference. Important
to separate control from ownership and to focus on the uses and rights
that individual players, whether they\'re health care providers or
patients, might have with that data. There was a broad consensus that it
was important to have easy to use opt in and opt out and defaults needed
to be intelligent. So that a patient could come in and say release the
spouse category of data to my spouse, or the school category of data to
my child\'s school. Rather than requiring this data point goes, this
data point does not go. Point by point.

Authentication of data is very important. Being able to say this
information, being a consumer reliably. This came from a real health
care provider as opposed to \-- or from a PBM, or this actually happens
the authentication of users is important as well.

Accessibility and richness. There was consensus very broadly and loudly
in the business models track, that everything that produced health data
should have a download button. Whether it\'s Ross\'s pedometer, or
whether it\'s an EHR system, or you should be able to get that data in
an interoperable signed form that can be integrated, and the consensus
at least in that group was the technology was not the problem. Even
standard there were important but not critical to start spitting out in
X amount. And see what happens. Not entirely sure to the extent which I
agree with that. But just getting the information out there was seen as
critical.

Trust of course is an essential component. And within the societal track
in particular, there was a real focus on developing transparent rules,
and harmonizing privacy with other interests. In particular one thing
that we \-- some of the stakeholders in particular have seen is that the
sicker patients are, the more things they\'re concerned about beyond
just privacy. They certainly don\'t want their data distributed at
random. But they\'re very interested in clinical trials. They\'re very
interested in interactions with other people in their disease
communities.

So having a set of rules that doesn\'t just prioritize research, or just
prioritize patient privacy and everything has to be opt-in. But that
actually had a harmonization process, perhaps not unlike the HITSP
activities that looked at those ethical, legal and social issues. There
are \-- there\'s ample scope for legislation, creating a recognized
oversight authority. And there\'s work being done in this area already.

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

And but, can you elaborate a little bit on that? Did anyone talk about
specific aspects of an oversight authority, or what might be necessary
to ensure that the chain of trust?

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

Well, two pieces of that. On the technical side, people talked about
ensuring the train of trust largely through digital signatures and
encryption technology. That\'s not actually \-- it\'s an infrastructure
challenge, it\'s not a technical challenge. The math is relatively easy.
And that is the approach that IHIE, and a number of other organization
that is are trying to build profiles for some of this data have taken.
That you sign the \-- and that enforces the rules.

Structurally, actually Ken, you were in more of that discussion than I
was. Do you want to comment on that?

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

In terms of \-- you know, there was both the idea of the technology to
track the use and sub secondary use and subsequent uses of the data, but
also a large degree of advocacy for audit trails. Over a strong belief
in technical controls per se. Although there was also a pretty vigorous
discussion in the technical track about much more robust technical
approaches to managing audit trails and to real time mining of audit
trails, for example, to detect aberrations in the use of the data.

But so we discussed both approaches. My impression is there was stronger
advocacy for an audit trail sort of post-talk accountability based
approach.

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

Before I go on from this slide, just one example of where I would hope
the \-- really the four points up to here might potentially get us. The
easier this infrastructure is to use, the more flexibility the general
medical and software community will have in creating what I would refer
to as point solutions to particular problems within the medical
universe. And in this case sometimes when we talk about point solutions
we think okay, they put in a system in this emergency room and it\'s not
interoperable and it\'s a bad thing. But sometimes a point solution is a
good thing. If it\'s a specific application for a specific category of
patient \-- for a diabetic or someone who has specific needs that maybe
no one in this room is even familiar with, but that solves a pressing
problem for that patient, there could be a tremendous amount of value
there. So if we make it easy for patients to access the data and
software, programmers, to access the data, in these personal health
records, I think we will see a flowering of open source innovation. Not
building full personal health record platforms and not building massive
systems for doing coordination of benefits, but for tracking blood
glucose or for integrating the drafts that Dr. Tang was showing the
group of a meetings ago, for weight loss, with the pedometer and being
able to display all of that easily on the cell phone. Creating an
opportunity for projects that might take one or two programmers a couple
of weeks working on the evenings to solve the problem they or a family
may have.

Right now there\'s a tremendous amount of innovation in business
software and personal productivity software in Web tools, driven on \--
by the fact that it is very easy for individual programmers, small
groups, small teams, to go and build applications which are useful.
Right now in health care that\'s not really possible. It\'s hard to get
access to the standards, hard to run HL7. Even things like the clinical
care document, are going to be difficult to document. It\'s going to be
difficult to find out how that works. You\'ll have to join HL7 to
download the implementation guide. The more we can do to streamline that
process, getting the data, signing the data and interpreting the data,
for developers, the more interesting applications we\'re going it see.
And I think that\'s going to really be a potentially extremely consumer
empowering trend. And if there\'s really one take-away from this
meeting, I think that is the takeaway.

Next slide.

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

Before you go on. Did you think about the mechanism that exists to
encourage the market to go there? Or do you think there\'s enough \-- it
will work its way through? There\'s nothing that needs to be done to
encourage that kind of \--

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

Well, there are things that need to be done. And what needs \-- in order
to encourage the development of that kind of individual applications,
the most important thing is to create environments where people can
learn. A standard needs to be open and available. And not necessarily
every standard for every piece of health care, but the pieces that touch
permanent health record that are most likely to affect the consumer,
there\'s a really overriding need for as much openness as possible. We
do need \-- the technical \-- I think this will fall largely on the
shoulders of the technical and standards organizations, to come up with
mechanisms that technically and in a very public and easy to understand
way, provide the infrastructure for connecting to a PHR server and
downloading an extract of the PHR data after the user has authenticated
they feel to that system.

A couple of very specific building blocks that need to be need to be
developed, first and there are a number of companies and organizations
that have done one version of this or another, and then need to be
adopted. I think HITSP could have a role in that. If the next consumer
empowerment use case included an interoperability component for mobile
phones or \-- there should be some way of being very broad about it, but
that actually required creating a set of required HITSP identifying a
standard or two for toned end interaction with the personal health
record. So I think it is actually much more of a technical concern than
it is a general public policy concern. And particularly if there is
broader acceptance of the general kept of what personal control is and
isn\'t.

Getting off of that a little bit, you know, the \-- the other discussion
that did come up in a couple of contexts was the relationship between a
personal health record and a health information exchange, and there\'s
welded again. But a PHR that isn\'t tied to a single provider or to a
single source of self-entered user information is going to contain data
from multiple sources and is going to contain pointers to data in
multiple places. So that raised a very interesting question which is, is
the personally controlled health record the core of a health information
exchange, or is it an element within it? And what I\'d like to do is
show two examples, and this is actually from the research platform that
came out of children\'s hospital, largely because we have the slide. So
let\'s have the next slide.

Now, this picture is actually something that exists, it\'s from one of
the NHIN\'s prototypes, the patient in the corner is Dan N, the CIO of
Chilton\'s Hospital, and he has a personal health record at Chilton\'s
Hospital which is tied \-- tethered. Tied directly into the Chilton\'s
hospital system and I actually would say his is tethered rather than
welded because the architecture is such that there\'s flexibility.

That personal health record which is in the NDO server is the name of
the server at Children\'s, is also connected to a locator service, part
of the MA, NHIN and HL7 translation service from pulling data from
different sources and a bridge which is connected to a sub network
organization which we\'re calling RHIOs. This is connected to Indiana
hospital. And they actually had the AHA moment with this particular
diagram a couple of weeks ago when Dan went to Indiana, had a couple of
tests, and then was able to come back to Boston and pull his data out of
the system in Boston through this whole architecture so this is
something that\'s real. What this shows the personally controlled health
record is sending us the gate wear to the RHIO. Dan could make the
decision of what data he would like to expose to the RHIO, by
configuring in his personal health record this is what I\'d like to
share more globally.

On the next slide, we just have a slightly cleaner picture of what this
all looks like internally. And again this is the end of slides but the
architecture mod sell quite general. We have in this case a personal
health record which is being fed by a number of different data
providers. By hospitals, by pharmacies and PBMs directly and then also
by \-- one or more RHIOs. And that provides the gateway by which the
patients and the provider \-- the patients can control access both for
public health and third party applications like clinical trial
recruitment, and then also back to the sub network organizations. So in
this model, within the personal health record, you have effectively a
RHIO of one. Even though there may be a number of patients using that
same server, the health record is keeping track of where the data is
coming from, which hospitals is pulling data from, which pharmacies,
which RHIOs. And then also controlling which information is pushed back,
both to those sources, but also to other patients and we\'ve got a
researcher up on the top there under users and you can tell thaws she
has the DNA helix next door and providers down below. Patients in the
middle.

So both the individual exchange, giving access to spouses or care givers
and as well as the \-- the research activity.

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

And did you discuss \-- this is Kelly Cronin. Did you discuss the
potential business models around that data flow? Because it could be a
provider that\'s engaging in a RHIO, or a sub network organization, or
it could be the NHIN service provider offering this interface or access
to a consumer.

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

For this discussion, we kept it very focused on the consumer as the
centerpiece. So we did talk \-- when we talked about business models, we
talked about what could the \-- what could be offered to the consumer,
and what could the consumer then do with that data? So again, we talked
about things like clinical trial recruitment, we talked about
participation in disease communities and there\'s some examples right
now for AOS, for example, where patients are coming together and sharing
their personal health data with each other, as well as with researchers
and even with medical devices manufacturers. And that\'s all voluntary.

So what we didn\'t \-- we didn\'t talk as much about the role that the
provider or the NHIN might have in providing this. But we did \-- I
didn\'t include a slide on this and perhaps I probably should have. We
did talk about the personal health record as they potential access point
for the NHIN itself. Whether the hospital provides the personal health
record and goes through the qualification process with the patient, so
the patient signs up the same way they would sign up to a tether or
welded PHR today, and then that acts as their credit hall and entrance
into the NHIN and we\'re working on presenting a little bit more of our
thinking around that.

So that\'s a very interesting opportunity to both take advantage of the
ability of the PHR to be a centralized aggregate where the patient\'s
data is, because there\'s really only one person who knows where all of
the information about a patient lives. And that\'s the patient. It might
not remember and might not have good records right now, but they\'ve at
least had access to all that data. They know what hospitals they\'ve
shown up to and know who is providing the insurance.

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

The concept you are exploring is that if you do have a reliable and
trusted source of longitudinal data, that there could be a pointer to
that application over time that could be part of the record locator
service.

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

Exactly.

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

And that that would in essence add more value to the health care
information exchange effort from a variety of perspectives.

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

Right.

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

I\'d like to just butt in with a time check because it is ten till, and
I\'m not saying you should stop because I know you have a few slides
left. But I\'m wondering if \-- because I know we have a lot to discuss
on our recommendations to AHIC, the next set of recommendations, do we
want to have him finish up, take a quick break, maybe 10 minutes, 5
minutes, and then go to Stephanie and have her present? That way people
can, I\'m sure \-- people are getting a little warm in here and it\'s
that time of day. So you can stretch. Is that okay with everybody?
Anybody on the phone have a problem with that?

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

That sounds great. These have been wonderful presentations so far.

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

Okay with me.

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

Okay.

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

And we\'re almost up because we\'re at point number 6. Next slide.

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

Before the next slide, let me just jump in on just react to it, those
comments which I thought were very perceptive and got to the heart of
the matter. I\'ll clarify to say that when we looked at this role of a
PCHR that\'s given to the patient that may be used as an access control
mechanism for data flow through the NHIN, we were agnostic in the
conference as Will started to say, as to who was providing that service,
but we did explicitly acknowledge that there would be a variety of
business models for whom that service provider might be.

And secondly, in the second of the two diagrams, we \-- you know, we did
contrast an approach a bit, where approach A. is a personal health
record as a first-class member of a \-- of a regional data \-- health
data exchange. And secondly, a personal health record in the second
diagram, where this can either represent just a zoom in on that
capability. It could also represent a model where the personal health
record is actually the primary aggregator of information that
essentially helps to create the NHIN itself.

And the \-- the truth of what ultimately emerges, my guess, will be
somewhere in between. But you know, one question that came up in the
conference is how much control of data flow in the NHIN happens at the
behest of the patient. And that was an open question we dealt with that
extensively, in the societal track, which is one of the three tracks,
where we explored issues of patient control of data. And the
architecture to support it. I\'ll let Will finish up because I know
you\'re short on time.

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

This is Ross. A quick question on that. With the NHIN prototype my
(indiscernible) is involved in. This is not the architecture they\'ve
been working on, right? I\'m just wanting to confirm that.

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

Which prototype, the CSC?

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

Yeah.

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

Yeah, and we\'re working with CSC on a prototype that does not have the
PHR at the very center of everything. We have \-- we\'re working on a
prototype with CSC, where the PHR is a first-class provider of data to
users in the NHIN where the PHR is locatable by the record locator
service. And also where the PHR can benefit from essentially a one-stop
shopping for population of the PHR by multiple data feeds from sort of
the data cloud of NHIN.

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

What I would also say to that and that\'s sort of the first slide. On
the Web site, Ken did a full presentation on this. And that is
available, both the slides and the streaming video of the presentation.
So I would commend that to folks, a lot more content on the thinking and
levels of personal control associated with those activities.

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

Next slide. Again, thank you. The final fraud point, and this came up in
both in the technical and standards discussion as well as in the
business models discussion. Is the technology is really not the problem
here. The tremendous number of or very sophisticated things have been
done on the Internet in the last 5\--10 years. Access control has \--
this was an example a couple of people brought up during the discussion,
has been largely sold in online photo sharing slides. There\'s probably
more direct consumer concern about the privacy of their birthday party
photos than there is about their health data. Because it\'s something
they think about more often. And the number of companies that have gone
out there and come up with systems that people are relatively satisfied
with. We\'ve also see a large number of forward thinking providers and
health plans that have come up with ways to do user authentication and
bring people into the system. We don\'t necessarily have to reinvent the
wheels there.

There was a lot of general discussion about R&D that goes on in other
industries, and I think HITSP has done a good job so far in not just
looking at health IT standards but looking at security standards for
digital signatures and XML, that are used in other contexts.

One example that came up, the Symantec Web technologies being
aggressively researched. Knowledge management could be applied in health
care and would certainly drive \-- again, this comes back to the need to
build an infrastructure that supports people innovating in small ways.
If you have \-- E-Vista is an excellent piece of software. It\'s written
it in a language that most programmers do not speak. You cannot go to
most rural communities and find a MUMPS user group. You can find a Java
user group. And so creating a platform that is accessible to people is
extremely important. Using industry standards that are used for
authentication, in other industries, massively increases the pool of
potential people who can work on those technologies.

Again, this is a little bit more motherhood and apple pie but it\'s
important apple pie.

Next slide. A couple of pieces of further technology \-- technological
consensus we wanted to point out. More depth. As Ken mentioned, there
was a lot of consensus that audit trails certainly were necessary. They
should be relatively simple and they should be focused on what the users
are doing, don\'t want to overwhelm people with data but we do want to
provide them with enough information that anything that needs to be a
tracked back can be. That was not a consensus that retroactive security
through auditing was appropriate for a personal health record
infrastructure. There\'s still need to be proactive security as well.

There was not consensus about whether the audit trails should be
interoperability from vendor to vendor. That was discussed and it was
not locked down.

There was consensus that data in transit should be encrypted. That\'s
again, fairly an obvious thing. There was a lot of discussion about
whether data should be encrypted when it\'s stored. Consensus was that
was a safe practice. Laptops wandering off. Not stored with the HIPAA
hospital provider environment, there was not conclusive conclusion
within the meeting as to whether that was something that should be
mandated.

There was \-- in that there was consensus that there was a need to
define a set of use cases for public health and research that really
aggressively thought about what is the role of a personal health record
and of the health record data that is under the patient\'s control in
these applications. If you provide a back door for public health, what
impact does that have on the patient\'s willingness to adopt the system?
If anybody can break down that door and say, "Your control over this
data is not absolute," you know, "We\'ll do what you say but we\'ll also
do these four things," that could have a substantial impact. We do not
have a consensus on what those use cases should necessarily be, but
there was consensus that they really did need to be defined.

Next and I believe last slide. Thank you. A couple of recommendations
that I think are as much as Ken and I took away the conference content,
although I think most people who were there although I think most people
would agree. We need to promote openness in PHR platforms. And second,
and I realize this sentence could be read two ways. To prevent
fragmentation through openness. And the emphasis is on prevent. We
openness we think will prevent fragmentation. We don\'t think it will
cause it. We think it\'s important to not crowd out innovation. That
means creating policies that enable interoperability and enable the
community to start develop applications which use this information and
create platforms. But that don\'t over specify too quickly. Or don\'t
create sense there\'s going to be an 800-pound gorilla that will wander
into the rooms and completely change the game for everyone.

And finally, and I think this was the most important thing, rely on
individual rights. Confront the privacy issues head on by giving the
patients control, letting them make the decisions about what is
important to them. Letting the patient be the integrator of his or her
own medical record, if that\'s what the patient wants to do. And then
allowing them to make decisions in a fine grained, very detailed
fashion.

And that\'s is all that we have to say. I know there were a couple of
people who are at the table now who were at the event and if they have
anything they\'d like to add to that, I\'d encourage them and we\'re
right up to about 3:00. Thank you very much.

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

This is Myrl and I have a quick question. When you were talking about
using information for public health and research purposes, did you
discuss the option of having people opt in? We would very much support
that, but have been thinking about it more from the point of view of an
individual would be asked up front. It would be transparent and they
could opt in to allowing their information perhaps to be part of an
aggregated database for research and public health.

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

In the two diagrams that we put up, that is very much the thought. That
the patient would be given the opportunity to opt in to either broader
public health surveillance, if they decide that they really want to be
an altruist about their health information. Or very specific research
protocols. And the PHR application vendors can present that as part of a
differentiator to the patient in terms of how many of those
opportunities they bring up to the patient.

One thing I\'d actually \-- we included along with the materials for
this conversation of paper, from the *New England Journal of Medicine*,
which they\'ve nicely allowed to us share broadly and put up on the Web
site called health information altruists, which was co-authored by Zack,
head of our (indiscernible), and the program committee chair for this
conference. And so I\'d actually refer you to that, which talks a bit
more about what our thinking is there. And that\'s in the information
packet.

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

Thank you.

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

This is Paul. I\'ve been saving up some questions. One is on the \--
there was a slide way back about the individual\'s right to sell their
data. I\'m completely sympathetic as far as the research and public
health. When you talked about trying to make some money off your data,
I\'m a little concerned about how we have Facebook and MySpace and so on
and so forth. And some of that can come back to get you. And so can we
really have informed choices about that giving away your identified
data?

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

Well, I think there are a couple of very good points there. First, that
the face book, MySpace analogy, is not quite right. Because those
systems do not give you any kind of ability to follow on with your data.
So once you put a photo up, someone can go and download that photograph
and have it on their hard drive or be up on the archive forever.

If we do this correctly, the patient would have the ability to attach
some rights. And some use management conditions to their data. And that
can be done via enabling technologies. So if the personal health record,
the term "health bank" has been used a fair bit, standards are in place
to control what happens once the patient has made a decision. I think
that risk can be minimized. That also does come back, though, and this
came up in the side track quite a bit. The need for \-- and actually I
think I\'ll call it a RIB for these offers. There does need to be an
authority, whether it\'s a medical association, whether it\'s a group
like National Health Council or a patient \-- I think actually a major
role (indiscernible) health organizations, to say this is \-- we\'ve
looked at this particular opportunity, and we endorse it. So for this
particular research study or this, we think this is something
(indiscernible). So there do need to be support mechanisms in place so
that it\'s not simply the patient opening it up to anyone who would care
to browse, but they have support in making that decision and
understanding in clear English what will happen with that data. There
are also models that we explored that could put a service provider
barrier in between the patient and some of the risk.

For instance, if a pharmaceutical company is \-- I think I even talked
about this last time I was at this Workgroup. If a pharmaceutical
company is interested in recruiting patients for a trial, one option
that they have is to comb through all the personal health record and
look \-- (indiscernible). Another option, and of course this only works
where there\'s enough data to make the decision, is to submit the
protocol to the personal health record vendor themselves and have that
third-party trusted intermediary look through the personal health record
and then say, "Okay, you\'re eligible for this particular trial from
this particular pharmaceutical company, would you like to get in touch
with them?" And here\'s what we found.

So the amount of data that goes out is minimized. Talk about that a
little bit at the conference.

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

I\'ll just add that in the societal track we dealt with this issue as
well. And it was more from the perspective of a general agreement not
that there was a particular way to do this, or that it was the right
thing to do. But that the technical infrastructure to support personally
controlled health records should allow for this kind of activity, and
that we anticipate that it may well be one of the sort of only slightly
sketched out at this point future uses of personally controlled health
records. And part of our general sense that there would be many also
currently unimagined uses. And so we dealt with this partly from the
perspective of potential opportunities that we didn\'t know just how
they would \-- how they would become enacted in the software or in the
culture. But that we clearly thought we need to support that kind of
transaction.

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

Bill, I like your idea of having some kind of RIB or oversight so that
at least they could somewhat qualify the offer and, you know, weigh in
on some of the pros and cons on that. I\'m worried as much about whether
it\'s trackable as even being able to make the right decision, informed
one, up front. And that\'s where the face book analogy comes in.

The second question I had was, you talked about irrevocable control of a
copy. Which actually I think is an interesting concept. Did you talk
about \-- now, see once you have a copy, can you alter things that were
not generated by the individual him or herself? In other words, once you
have a copy of something, can you \-- do you \-- does the recipient of
that lose the ability to track down or locate any source data that\'s
outside the control of an individual if passed a copy of record from the
individual?

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

With the current set of standards, yes, they do. I mean, if you spit out
an XML format, whether it\'s a CCR or, or CCBs or anything else out
there, that has statements of where the data came from, potentially, but
it doesn\'t have the signature of that data.

In the ideal world that we\'re envisioning, that would be maintained.
And technically, the way it would be done is by using the same kind of
encryption technology that underlies the Web right now. You have an XML
file is that is a continuity of care record or CCB record and part of
that document, and there\'s a HL7 implementation guide already doing for
this with other kinds of messages, are signed. So \-- and that signature
is cryptographically linked back to the original provider. So it\'s
very, very easy software-wise. If I have access to the right central
databases of identities, to say okay, this piece of \-- this lab test
result, or this clinical note, in this unaltered format was put into the
system by Brigham and Women\'s Hospital.

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

Is that a requirement of your concept, I guess \--

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

That\'s a good question. You know, that\'s something that I don\'t think
we actually have coherence on. I think it is, from my perspective, and
I\'m not going to speak to the conference\'s view on this because I
don\'t think we got into that in enough detail. It is somewhere that we
absolutely have to go in the long run. The usefulness of the data \-- of
data that is portable and authenticated, is so much greater than data
that is portable but not authenticated. We\'re going to have consumer
adoption of these technologies, we need to have that capability.

Is it necessary for the first step? Probably not. It\'s something that
could actually be layered on afterwards with relatively little concern.

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

I have an angel and devil sitting on my shoulder, one is saying I want
to continue this conversation because this is what I live and breathe
and the other is saying people are really wanting to make a bolt for the
door for a minute. I would like to suggest we take a five-minute break
and suggest if William is not needing to bolt, we can continue
informally over the five minutes. Meet back at 15 after, and we\'ll
resume, and then we\'ll summarize anything that exciting that came out
of this 5 minutes before we took the break. Is that okay with everyone?

\[break\]

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

Put together a really rudimentary application. And just saying to the
people of quicken for permission to use the IP, and moved on. And then
loaned it to some other people at Intuit and people really liked it and
thought it was really helpful. That is a very organic work to start
working in this space but that\'s how it works.

Next slide, please. Our goal with our work is not modest at all but the
way we go about it is fairly humble. We want to revolutionize by making
changes in the way they do things that are so profound they don\'t want
to go back to the old way of doing things. We hear this all the time
with our financial management applications, and in particular TurboTax
has a devoted following of loud consumers who will never go back to
pencil and paper and forms again.

Next slide. Our applications rely on three things in order to get the
kind of consumer adoption that we\'ve gotten. Number one is we
consolidate (indiscernible) multiple sources. We connected up to 4,500
financial institutions so far, and at the consumers\' command, not at
the financial institutions\' command but the consumers\' command, the
consumer can ask for down loaded data using their own user name and
password, using our PIN vault our personal information vault. From any
of the financial institutions that are connected to our network.

And in essence, we couple that with the simple user interfaces that we
create and action-oriented decision tools and consumers just keep coming
back.

Next slide. So how do we do what we do? I just want to quickly spend a
couple of minutes on our methods and tools so you feel anchored in the
data that I\'m going it provide about what we\'ve learned. It\'s very,
very different than the other method and tools that have been presented
today. We have a very rigorous consumer-centered research method called
consumer-driven invention, and it\'s based on observing consumers doing
what they\'re doing and supplementing that with any quantitative
research that we feel we might need to validate. So the quantitative
research is in the middle and sandwiched on both side by actually
sitting with consumers and watching them do what they do. We focus on
important consumer problems that exist today. And we do that by asking
them not about whether they like a certain feature or functionality, but
just asking them about what are their points of pain, we watch people
actually do the work. We create solutions that help them make decisions,
make the decision that they say they want to make. And we really focus
not on just our customers but on prospects. On e-mail who don\'t use
software and don\'t use our product, who don\'t even feel like they have
a problem. Because we don\'t want to basically bias our findings by
saying we just want to talk to people who are in pain now.

Next slide. So I just want to tell you quickly about some of our methods
and principles. As I mentioned, it\'s all on consumer-focused observable
data. Supplemented by quantitative research. And we do that by literally
following people home. So we might meet them where they purchased our
software, or we\'ll contact them and ask them if we can just visit with
them in their home and we send teams of three or four just to observe.
And we bring them in to our usability labs, of which we have four on
campus, and we actually watch them sort through piles of paper, or tax
forms or in this case EOBs and build claims. And what we do is
religiously focus on observable behavior. We focus on what we see, not
what people say. We focus more on their word than our preconceived
notions. We trust how they\'ve written things rather than when we\'ve
given them four answers and survey. We look and we look at the verbatim
and say does it validate how they\'ve answered this question or not? And
we really look to see what the action is behind the word. And it\'s a
rigorous method that really comes from our founder and literally all
7,000 of our employees do these follow me homes and consumer-based
research methods and principles as what we do. No matter how \-- where
you are on organization from our CEO all the way down to our project
managers, we all do them.

Next slide. So what\'s our approach to health care been? Next slide. We
have, since the spring of 2004, interacted with over 1,450 consumers,
and we\'ve interacted with them based on what are your points of pain?
So very general question, what\'s hard for you about dealing with your
health care? We\'ve done over 300 personal interactions follow me homes
and usability labs, and we\'ve also validated that with hundreds of \--
that we\'ve scoured, and cross matched, and thrown out some because we
felt it didn\'t validate and kept some and validated with consumer
research. That was based on qualitative studies.

Next slide. So the big thing that we\'ve learned is home grown methods
aren\'t working really well, relative to how people are dealing with
their health care finances. And they\'re dealing with their paper
records in much the same way, and people have reported that they feel
that they\'re out of control and overwhelmed at the current \-- at their
current method. They\'re time consuming, inefficient, and no matter
what, we saw piles of unopened letters, maybe it was a pile of five,
maybe it was a box like this one, of literally 150 letters. And EOBs and
claims and bills. But consumers uniformly report feeling overwhelmed.

Next slide. So we have found a couple of things that we think are
surprising. Now, let me copy out this by saying number one, we\'re not
veterans of the health care industry. We don\'t claim to be experts in
the industry. What we know how to do is organize and simplify lots of
complicated data. That\'s what we\'re veterans as. We\'ve concentrate on
finances in the past and we didn\'t go out with a bias in our research
towards financial issues. But in fact what we learned was maybe because
they knew it was Intuit asking the questions, when we followed them
home, but even if it was in more covered research that was just from an
anonymous source, people did uniformly report they are having a hard
time navigating their finances and our claims. So a lot of what we did
was delve into that. However, what we learned was issues span across the
financial and care areas.

Most importantly, and I think most importantly for this group I\'m going
reinforce something you already know. A lot of the population just
doesn\'t care. Right? Over half the population is saying, whatever is
happening right now, it\'s fine with me. But 41 percent of the
population is in a good deal of pain, we call it "top-to-bottom pain."
And they really do want a better solution. We found that around 36
percent are in a wait and see mode. They don\'t have faith that a better
solution will come down and they\'re resigned to what the industry is
currently providing both in terms of the way care information is managed
and the way cost information is managed. Consumers reverse much more
engaged when they have a stake in the game. If they have someone at
home. A chronic illness. If they\'re on a higher deductible plan. They
care and they care significantly more than other people.

The other big surprise is people don\'t claim to have no information. We
were thinking that people might feel that they didn\'t have enough
information. That\'s not the case. People feel like they have lots of
information, from multiple places and it\'s fragmented and overwhelming.

What\'s interesting is there\'s a big difference between what people
have access to and what they want to use. And I think that it\'s
particularly relevant in light of some of the conversation we talked
about earlier relative to the features that are available through other
applications. The question we\'ve asked is not necessarily what do you
think exists out there, but what would you use? And what do you have
access to and a lot of people have access to some tool.

But for some reason or another that we are trying to dig into pretty
hard in order to have a successful application, people don\'t use those
applications always.

Next slide. So let me talk to you in much more depth about what we\'ve
learned about consumers\' points of pain. The points of pain as I
mentioned span across cost and care issues. And they really focus with
one big theme. The points of pain are about things for which people
don\'t have a reliable way of doing it today. In other words, the way
they do it today isn\'t just a little frustrating. It actually creates
an emotional sense of overwhelming, or being overwhelmed or feeling out
of control. And people really claim those emotions. And when you hear
people\' stories, it\'s just self-evident.

The number one area that people claim is literally making sense of their
financial management within health care. Their bills and claims don\'t
make sense to them at all. They don\'t know what the right amount to pay
is. They\'re not always sure what entity they\'re supposed to pay, even
though they get a bill from that entity. They get a lot of pieces of
paper that say this is not a bill and that\'s confusing to them.
They\'re not sure when they\'ve gotten a bill, whether the bill has
already been processed by their health plan or not. Because it\'s not
indicated anywhere on the piece of paper and that\'s hard for people who
are not in the system and under that there\'s two different entities
processing this information. That\'s not self-evident to consumers
unless they\'re \-- we call them expert users of the system.

So the next area that we hear a lot, and we see observable behavior in,
is avoiding unanticipated expenses and financial surprises. People feel
quite resigned to the fact that they don\'t understand why some things
are considered an acceptable expense and some of them are denied. And
people tell stories all the time of I called to find out whether this
facility was in network and I didn\'t understand that I was supposed to
ask about the radiologist who was reading my CAT scan as well. That\'s
not a level of usability that most consumers understand. It\'s just not
transparent to them. And they\'re all deeply concerned about the
financial surprises that have to do with navigating health care system.

Another big area is understanding how to impact their costs and save
money. So the first and most important thing at kind of a group level is
we\'ve never heard anybody get up and say, you know, I want to go get
more care. We thought people weren\'t concerned about sort of the global
issue of the cost of health care. But we found the consumers are on a
global level. They just don\'t know what to do about it. But they claim
concern and they talk to their employers about the fact that they have
\-- they don\'t want to spend more than they need to. Particularly when
they have self-insured employers who make that transparent to them.

The other thing that comes true in a lot of these conversations, is that
people have little funky ways of saving money. We observed 25 different
cost saving measures that consumers use over and over again, and when
asked, would you like hints about how to save money and when shown
different conceptual designs for hints how to save money, consumers love
them and say, why can\'t you give me this today? So two more areas that
are points of pain are, number one, interesting effective interaction
with the health care system. So what does this mean? This is a big
catchall for the frustration that people feel around not knowing how to
have effective conversation with their doctors. They know they have a
short period of time, sometimes they forget to ask something, or
something comes up at the end and they feel like they don\'t know what
to do about it. Sometimes they\'re emotionally overwhelmed when they\'re
having those conversations and don\'t retain the information. And they
walk away feeling like I didn\'t do that very well. Finally, on a
self-service basis, people are interested in finding accurate
information around their conditions. There\'s a lot of information out
there. But it\'s really hard for consumers to tell what\'s accurate
information and what\'s not accurate information. And some people go to
great pains to try and catalog and categorize it. We\'ve seen very
expensive filing systems inside people\'s homes where they take things
that they think are really good sources and then they think things are
maybe good sources, things that they think are cruddy sources and put
them in different piles. Piles of paper are not actionable. Piles of
paper ends up just being piles of paper.

Next slide. We\'ve also heard from consumers that they have some things
that are must haves in applications. We have heard that consumers are
actually more concerned about their health care data than they are about
their birthday party photos. So your comment earlier, well \-- they are
more concerned about their health care data than they are about the
security and privacy of their financial data. It\'s of paramount
importance, can\'t say more about it, happy to tell you chapter and
verse on it.

The next thing is the data needs to be delivered in an understandable,
comprehensible way. Right now the sources of data they get, particularly
about their claims are hard to understand. And it results in a good deal
of frustration and shutdown. Look at the pieces of paper and just don\'t
get what the numbers mean.

We learned that consumers have a very, very strong preference for data
to be all in one place. They don\'t specify what that place is, but they
actually think in a lot of cases that that all in one place already
exists and their doctors are talking to each other already using that
data that\'s all in one place. And when asked, where is that all in one
place? They say my doctors have it. So it\'s a very interesting myth but
it reflects a deep wish that the data is all in one place. And when
people see concepts for our application, the first thing they say is
wow, then it would be all in one place.

Finally, and most importantly, it is better be to use and takes less
time than they\'re spending right now. That means by definition, no
manual data entry. This takes a darn long time to enter that data.

Next slide. So let me \--

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

Can I stop you there for just a second?

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

Certainly.

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

This is Myrl, from the National Health Council. And we certainly have
been finding all of these same things. I guess I was interested when it
said no manual data entry, and I think that we were find something that
for the medical information, it needed to be automatically input into
the record, but that people were more open to manually inputting other
information, complementary and alternative kinds of things, information
that wouldn\'t be as easily put into the system without them actually
doing some manual input. Could you address that?

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

Yes. So we have seen a small minority who have explained that if they
understood where the data was going, or understood where the data was
housed, they might be interested in putting in more data. But if it was
to serve their purpose. So this is the interplay between their concern
around data privacy, and their desire not to do more work than is
necessary unless it serves an explicit purpose for something \-- that
they deemed really important. And we have seen \-- I\'m just getting the
number in my head. I think with our last concept we saw 18 percent who
said they would be willing to enter data and it was toward things that
you can\'t get anywhere else. And it was allergies-related, that\'s what
we asked them whether they\'d be willing to put in their allergy
information and the over the counter med if they were willing to put
that in, and they said only if we knew where it was going.

Does that answer your \--

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

Yes, that\'s great, thanks.

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

So we\'ll tell you what we\'re doing. Maybe you can\'t say anymore, but
(indiscernible) would be useful, you might say this would serve a niche
purpose.

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

They can\'t say it as a generic purpose. This thing called for quicken
for health care. It\'s coming.

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

That\'s exactly right. Well, what\'s interesting is I want to be clear
that our application focuses on understanding and managing better
decisions around the financial aspects of people\'s care. What you all
spent the day and I guess 10 meetings before this talking about is much
more about the care aspect of this personal health record, and let me be
clear that we do very little in our application to address the care
issues. By virtue of having all the financial data in the application,
you do have a longitudinal record of your interactions or encounters
with the health care system. But we\'re not making that the focus of our
work at all. Frankly, we don\'t have expertise in that area. And so
we\'re really focusing on the financial aspects of health care.

We have a Web-based application, it electronically presents information
on claims diagnoses, prescriptions and treatments, that\'s all the
information that comes through on the claims record, augmented by a few
other data fields. And we are using state-of-the-art certificate-based
user authentication program, fully encrypted relative to how the data is
passed from the source to the consumers, and after that it is under the
consumer\'s control.

Our later releases will actually bring in information from other sources
that are financially related. Flexible spending accounts, health savings
accounts, and we\'ll also provide electronic bill payment. So our focus
is to get at the point of pain that we heard the most about, and that we
felt had no real solution today. And I think it\'s very interesting that
this set of features never came up in your research because I actually
do know there are two other applications on the Antarctica do address on
a very, very small basis, financial issues.

Next slide \--

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

This is Myrl again. I guess I\'ve been hearing from different entities
that are working this issue from the banking perspective. Where various,
I guess banks have come together to attempt to implement the service of
taking all the financial data that the banks already manage on health
care and linking it up. Have you been involved with that at all? Know
about that?

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

Yes, we know about it. And we supply some of the underlying technology
to make it happen in the case of certain financial institutions that we
work with.

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

Okay, thanks.

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

Sure. We\'re all for it. As long as the data is all in one place and the
consumer can get at it, we\'re all for it. And financial institutions
have worked with us for a while to try and help that along.

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

Well, what I hear is that you\'re addressing the entire package, which
is much preferable to us, rather than sort of just taking care of the
banking and billing and those things. By having it all integrated, it\'s
\-- it seems much more usable and feasible.

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

Well, that is \-- what we believe is there are lots of sources of
critical data for consumers, and that they \-- consumers are benefited
by having a way of bringing all that data together. So consumers are
interested in actually understanding the whole picture of their finances
as they decide what to pay, after they figured out what they owe. Just
by virtue of doing that. That requires three sources of data. Data from
financial institution, from the institution who does their claims, and
data from their providers who actually submit the \-- or issued to them
their bills.

And we believe that if you put all that information in front of
consumers, the same thing will happen as happens in quicken today. What
happens in Quicken today is people take a lot less time to assemble all
the data in one place, and so they spend a lot more time making good
decisions for themselves. We instituted some years ago feature of
one-touch budgeting in Quicken and we did it \-- managers really fought
for it and it was quite a legendary fight at Intuit to get it in because
everybody said nobody likes to budget. It\'s actually a frequently used
feature in Quicken and very easy to use, and nobody liked budgeting
before, so nobody asked for it because it was too hard to do.

So did I answer your question, Myrl?

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

Yes, that\'s correct, thank you.

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

Okay, just to my concluding comments. Key enablers for consumer
adoption. Well, I just preambled. We believe if you give the consumers
access to their data, they can use it to make better decisions for
themselves. And we believe there isn\'t one set of applications or
features that will address all the different burning points of pain that
consumers have, because their points of pain are just remarkably broad.
And we used a lot of Kleenex when we go to people\'s houses and hear the
stories they tell us.

But uniformly, whether it\'s navigating what to pay or owe or having
better conversations with physicians or figuring out what they might
need to do next relative to asking questions about their own care, it is
giving consumers access to their data, their previous encounter with the
health care system that helps them inform what they need to do next.

Next slide. So that brings me to how I hope this group is willing to
help. I and Intuit hope that you will be willing to help influence the
industry to provide data to consumers in a way that\'s in a standard
electronic format so that people can actually use that data. And to
support all the efforts to lead the way in making applications that
combine decision tools and relevant underlying data. My healthy vet and
CMS portal that they use to make decisions around what (indiscernible)
those are both held up inside Intuit as places where a lot of great
functionality comes together with good underlying information.

Next slide. One more. Okay. So any questions relative to \--

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

And before we go to questions, I want to do a time check. Sorry about
this, but it\'s 10 till 4:00, and we have an hour \-- really an hour
because we have 10 minutes for public comment. And I know you mentioned,
Paul, maybe \-- do you want to ask if you want to do that or defer to
next time?

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

Paul, since we know that there\'s been some draft reports circulating
from the Kaiser AMEA meeting on integrated personal health record, we
wanted to give you the opportunity to talk about what came out of that
meeting or at our next public meeting. It is up to you.

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

I wonder if we wait until they finalize the report and then we could
distribute the final report and go over any questions. Would that make
sense?

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

That sounds great.

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

Actually it is fairly lengthy in terms of what came out of that. And I
don\'t want to take your time here.

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

Okay.

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

I have about 15 questions myself and I\'m sure other people do, too.
I\'m wondering if we maybe want to skip to \-- I just \--

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

Whatever you need.

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

To the recap \-- excuse me, the Workgroup session about next
recommendations, try to get that done and then use the time left over to
ask questions and we can break for a public comment and then we can just
have a \-- I\'ll buy everybody waters and finish up. Is that something
that we can do? Because I\'m just real sensitive \-- I know we have a
lot to talk about on these recommendations, and I know there\'s probably
a lot of conversation on this. Anybody have any objections to that?
Okay, thank you so much.

And Rose Marie, do you want to take the helm back and start talking
about the recommendations?

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

(indiscernible) I wonder if it will still be easier. I\'m happy to
participate but I wonder if it\'s still easier for you to do it when
you\'re there, with the people in the room.

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

Happy to do so. It\'s up to you.

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

You know, obviously I\'m sorry not to be there. I\'ll try to make it as
functional as possible.

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

Can I recommend, this is Kelly. That we think about either now or at the
end of our meeting when we feel comfortable advancing recommendations.
Just from a process point of view, we have an opportunity to potentially
present on December 12, which would mean we have about a month to craft
some recommendations we can get consensus on, or feel comfortable
advancing at this point. Or if we need two months, we have until January
23, if we want to take more time to carefully evaluate a longer list.

So those are two near-term options. Now, we\'re not obligated to present
at either one of those meetings. But I\'ve been hearing over the last
month there\'s several Workgroup members that really would like to press
forward. It might be helpful for us to sort of thing in the context of a
time frame so we can plan around that.

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

Can I ask a question. This is Justine. At the last AHIC meeting, last
Tuesday, there was beginning discussions of defining priorities. I know
it was mentioned that HITSP, all the contractors needed to have their
work orders, if you will, by the end of this year so I just wanted to
know how is that \-- because it didn\'t seem like they came to any firm
conclusions at the October 31 meeting, what do you see happening at
December 12 and how does what we\'re doing here tie in to what HITSP may
be asked to do for others?

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

That\'s a really good point. We are going to have an opportunity to look
at sort of the very high level version, probably more like an outline of
what we\'re calling almost like a prototype of these use cases before
they\'re fleshed out and then we can compare that with the priorities
that they\'ve advanced.

As some of you may know who followed the October 31 meeting, the
information that was presented to them across five workgroups and also
some information that was identified by CCHIT and the Health IT
Standards Panel was quite complex and while we tried to give a lot of
orientation and a lot of background, a lot of explanation, I don\'t know
that we got as much definitive or specific feedback as we really needed.
So we\'re relying on two rounds of public input as we develop these use
cases to really refine them and get it right.

And this Workgroup is obviously a lot closer to some of the issues and
all the conversations we\'ve had over the last 3\--4 months, to make
sure that what we have put forward is accurately represented in the
development of those use cases. So I think at a minimum at the next
meeting we\'ll likely be able to talk about. But I don\'t think that\'s
going to be something that would be overly time consuming. I think what
we might end up recognizing or talking about in the context of
recommendations could cover some of the issues but certainly not all the
issues that would be relevant to what is advanced in the youth case. And
then we would be able to continue our work for the next year to focus on
things that we have not yet talked about enough or really fleshed out.

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

Kelly, this is Rose Marie, it sounds to me like there is a pretty good
argument for our \-- let me see how you feel about this \-- for our
moving forward the things that we can come to consensus on. And I
suspect there are a number. And then there would be other potential \--
you know, more work to do, and we could do that afterwards. So is that a
reasonable suggestion?

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

You\'re saying you want to try to do basic recommendations now and see
if we can finalize \-- you\'re breaking up just a bit so I lost a bit of
that.

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

I\'m sorry. The question was, whether \-- what the group would think
about doing the basic recommendations on which we\'re comfortable
agreeing \-- not today but over the next week, with the idea that there
certainly is plenty more work to do and that will take us longer. But
that this would give \-- would allow us to move forward the things that
we think are perhaps at least most important in this \-- in our early
look. What would the \-- Kelly, does that \-- is that a fit for what you
were saying? I also was losing you a little bit. Tell me if that\'s not
what you \--

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

Yes, I think that\'s entirely possible, it\'s really up to you and Nancy
and Ross and the Workgroup to say, "Yeah, I think we can do that. That
seems realistic." We probably have about 4 weeks. If we want to take
sort of these better developed ideas, and turn them into
recommendations. We have \-- you know, a fairly long list of potential
areas of recommendation that we might be able to go through and make an
assessment of what seems to be apparent as either something that\'s
really important in the short term that needs to be addressed and
something we can address, something that where we can identify some
definitive action that would make a difference. Or you know, we could
also just be tabling the issues that we know we need to discuss more,
before we have any real definitive ideas on what needs to happen.

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

Ross, would it make sense to go around, since you\'ve got people you can
actually look in the eye there, would it make sense to go around and see
if people think that, given for example if we were to develop if Nancy
and I say we were to develop a draft, obviously with the help of anyone
who would like to participate, and then distribute that and see if there
was agreement. Does that seem like something people would like to see
happen?

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

Does anybody have any thoughts about timing, how much they\'d like to
\--

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

This is Lorraine. And I guess for me, anyway, it seems there could be a
little more discussion about what our recommendations might be and that
it might be premature to hope to make them in December. And thinking
frankly from a CMS perspective of understanding what the implications
are, of these for CMS, if CMS were to need to be engaged. From a
logistical standpoint. Because I don\'t yet sort of understand what some
of these recommendations might be. So I think it would for me and for
representing CMS would be helpful to have additional discussion. What
some of these recommendations could turn into from the real programmatic
perspective.

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

Before you weigh in on whether or not we should do it in a month or two
months or more?

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

Right. I don\'t know that December is \-- I think December is early.
Since we don\'t have consensus on these things yet.

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

Would it help from the CMS perspective, to have something to begin to
think about responding to, or do you think it\'s too early to do that?

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

Well, there are a lot of things on here to think about. On the sheet
that we have.

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

Right.

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

Interoperability. Consumer awareness. I think because HITSP, we haven\'t
seen the use cases, there are a lot of other \-- and you have to correct
me if I\'m wrong, there are other initiatives going on that tie very
nicely that we will be seeing results from. The AHIP, Blue Cross work
that HL7 is doing, impacts a lot of the issues on these pages. Survey
issues, which we\'ve talked about. Have tremendous impact from a timing
and budget standpoint.

And some of the work is cross over with the other groups. We don\'t know
what they\'re planning to do yet. It seems like we might be operating in
a little bit of a vacuum. Maybe it\'s a picking our priorities and see
if we can make recommendations and then seeing if it\'s practical.

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

Do we think that the other groups might be thinking \-- I wonder, Kelly,
if other groups might be thinking the same thing? I know one of the
other groups that we have some folks on, asked me the other day, you
know, where we were and how \-- where we expected to be when, which led
me to believe that they were having the same kind of conversations
we\'re having today. That is, you know, well, we maybe don\'t want to
step ahead until we hear what the Consumer Empowerment Group is going to
say.

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

Are there some things \--

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

I don\'t think really anyone is awaiting those. It\'s just a matter of
how quickly we think we can reasonably process a fair amount of
information to come up with recommendations that most people feel
comfortable with. Really any kind of consensus is determined at the AHIC
level because we are officially a subcommittee. But I do think that
it\'s up to whether or not we want to move ahead with things we do feel
comfortable with that we think would be better to put on the table in
another, you know, month or 2 versus those that really do recall a lot
more coordination, or analysis or consideration before we can come up
with something that\'s a definitive action.

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

I think there are things that could certainly be put on the table now
and could influence other groups, so for example, privacy and secondary
use of personal health data, may be something \-- while we feel very
strongly about and it, could be recommended to the privacy and
confidentiality committee which now is only working on user
authentication, to my knowledge.

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

This is Lorraine. That was their designated priority. Such a big issue.

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

And I\'m sure that Kelly would have a great comment but she had to step
out. So, one \-- just very logistical, I look at the dates and I know
this group in particular and just a lot of the other things that have
gone on this year, my usual cycle of work didn\'t have its usual cycle
this year in terms of when the lulls were. So I\'m looking at my \-- I
really have not taken any official vacation yet this year and I\'m
trying to figure out how to use it or lose it before the end of the
year. Well, actually, very literally. And with the holiday season, it
looks really challenging to do the kind of level of work that I think
would be best in getting December 12 recommendations. I can see having a
breather by the time \-- you know, I\'m not opposed to trying to push a
lot of this stuff forward or get a lot of it done as much as possible
before, but allowing us to have a cycle, at least one time where we\'re
not trying to do everything under the gun would just be very nice.

I don\'t know if other people \-- I see nodding heads around here a bit.

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

I would want to give things enough time to \-- we don\'t want to feel
\-- having it right is better than having it done immediately, no
question.

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

I think it would be important to see use cases that will see how the
priorities tie in so you can pull it all together. And obviously EHR
Workgroup and Chronic Care certainly tie in. So I think taking manager
time to do it right makes sense.

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

My other thought \-- and maybe it\'s not for this round, but I found it
very helpful certainly this last AHIC Meeting to hear reports out from
other groups. What I\'d really like to do is have a joint meeting with
all the other groups where we have like a day-long thing where there\'s
breakouts for us, but what we\'re trying to do some of that crossover
because there\'s so much crossover with these other activities that are
going on, I\'d love to see maybe in this next cycle some coordination
and plan it in advance so it\'s still open to the public and just that
it\'s a very focused joint and then breakout day of rolling up sleeves
and get some things done. And actually getting feedback from the other
groups about what we\'re doing and agreeing that yeah, this is your
domain versus our domain.

That was impressed upon me from the last meeting.

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

I think that would be particularly helpful. We\'ve been thinking about
internally how to do more proactive coordination across the groups.
There will be areas like clinical decision support, clinical research,
continuously the privacy and security issues. That are cross cutting
across at least three if not more of the workgroups. Certainly with
privacy and security it\'s all the workgroups. So we recognize the need
to do that in a real time basis and we have a couple of mechanisms in
place to start that. But \-- and briefings across the Workgroup. And I
think an all-day meeting is a great idea. We just need time to plan
that.

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

I\'m not suggesting for \--

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

Yeah, it\'s a great idea.

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

This is Myrl, and I would just suggest that \-- whether or not we have
an all-day meeting, what would be helpful is if in preparation for that
or for our further discussions, is something that could be put in front
of probably all of us from the different groups, that really kind of
side by side shows the major issues we\'re working on, and where we\'re
addressing the same ones, or there is that crossover or overlap. You
know, just scheduling a day long meeting without that background, I
think wouldn\'t be as effective and efficient as it could be, and even
if we didn\'t have the meeting, that type of information presented in
that way so that we become more clear about what each group is doing,
and how we can leverage the work to one to the other would be
beneficial.

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

And Myrl, this is Kelly. For the October 31 AHIC meeting, we did
actually do a cross-section of all the workgroups that have identified
priorities and the issues specifics to the Workgroup issues specific to
those priorities.

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

I apologize, I didn\'t \--

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

That\'s okay, but it was a really good exercise to go through because we
highlighted all the cross cutting issues or issues of overlap, and there
are quite a few. Which we all know. But \-- and coming up with a system
to manage all that is really what we\'re working on now. So I think at
the very least we can share that and build off of that so that people
have a good understanding of what everyone is working on.

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

Yeah, and we do have the meeting materials from October 31 posted on the
Web site. So if you have the patience to look through the summary of \--
it\'s a very large document, of the cross cutting issues. That gives you
a quick snapshot.

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

Okay. And a very large summary.

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

Yeah, we used 11 by 18 paper \--

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

I have one other question from the October 31 Meeting. Secretary Leavitt
a couple of different times said, and I was looking through my notes
from it and I couldn\'t find it rapidly \-- in rapid fashion, but said
something to the effect of we really want to focus on the technical
interoperability issues, not policy issues.

And I thought, okay, that\'s \-- I want to understand that a little bit
if I can. And maybe you guys understood it, or \--

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

Yeah, I think the Secretary is very concerned in clearing the technical
barriers. And I think if you go back to the charter of the AHIC, we do
have a fairly broad scope in terms of trying to achieve progress with
both interoperability and adoption. While ensuring the privacy and
security of health information. So our charge formally under the charter
is quite broad. And I think it\'s really up to the leadership of this
group and all of its members to decide where you want to go because this
is a Federal advisory committee. And it\'s up to you all and leaders in
your respective organizations to weigh in on what you want your
direction to be. As long as it\'s within the scope of the charter.

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

That\'s very helpful. Thank you.

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

It sounds as if we have a consensus here that is taking time to look at
the information from the last meeting to pull together information and
to have a chance to look at it in the coordinated fashion, would be very
important and that we shouldn\'t leap ahead and try to do something in
an inordinately rapid way. I certainly \-- I\'m sure Nancy will be in
concert with that as well, it seems to make sense.

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

Having said that, maybe we can move into this, and maybe you guys can
take a couple minutes to kind of walk through what \--

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

Yeah, \--

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

Structure this and maybe respond to it.

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

Michelle Murray, who is the policy analyst at the Office of Program
Coordination and the lead support for this now, put this together and I
worked with her a little on this and I think we took this really from
the \-- the themed documents that were created to date that sort of
recapped on all the testimony we\'ve heard from our two all-day public
meetings and the interim presentation. We also tried to summarize areas
that we thought we heard that there was some early consensus around or
emerging consensus around. We also drew some topics from the Federal
policy levers document, and the enablers and barriers from the vision
document. So this is really trying to come up with a synthesis of what
we discussed over the last 4 to 6 months.

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

What is the document you\'re referring to?

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

This is, it\'s a draft document that is entitled Consumer Empowerment
Workgroup Recommendations for the AHIC.

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

Is this on the Web or was it distributed or \--

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

Yes, \--

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

I just sent it out right before the break.

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

Okay, so it should be in a recent e-mail to you.

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

Okay, thanks.

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

This is a just in time group.

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

Do people on the Web have access to that?

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

Yes. They will within a day or so, but it\'s not up right now. Anyway,
just to briefly summarize, because I unfortunately have to go to another
meeting right now. We have some specific concepts that have been
discussed in the way of potential recommendations around
interoperability. We have talked quite a bit about certification
starting off just with interoperability requirements. And have gotten
pretty much universal support from that through the testimony we\'ve
heard today, including all the \-- or over the last 6 months, including
the testimony from all the vendors. And a later part of the document it
goes into certification criteria for privacy and security requirements,
which I think we need to talk more about, in the way of what\'s a more
technical requirement versus a policy requirement. And we obviously
recognize the importance for standards to enable the interoperability of
EHRs and PHRs building off of the conformance criteria that\'s being
developed and considered throughout the HL7 work. And we talked about
\-- I think some standards around claims data. I think this has more to
do with data quality as opposed to data interoperability with respect to
the CMS claims data in our policy levers paper. But that\'s something we
probably need to discuss more because there are a lot of issues with
data integrity and quality and claims data in general. And I think while
we recognize it\'s a problem, we haven\'t necessarily come up with a
solution to minimize errors of omission or commission or just
misinformation.

So I would just like to turn it back to Ross and Michelle to fill in the
rest of this document because I unfortunately have to step out for a few
minutes.

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

Michelle, was there anything else you wanted to kind of provide from a
background perspective? Thanks for doing this. I think it\'s quite \--

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

I think obviously there\'s a whole lot around consumer awareness and
demand. So that\'s a rich area \-- and we\'ve also heard today about
doing more research in that area. A lot of recommendations came from the
policy recommendations that came from the policy document we presented
in September that addressed some of the research issues and health
issues.

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

Michelle, do you know if there will be any more contracts released from
ONC to do the research?

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

I don\'t think anything is set up currently.

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

That\'s where we would need a recommendation to act on.

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

Okay.

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

I would say business models, there\'s not a lot known yet, so there
needs to be some research and possibly some pilots to learn more about
business models and what might be a viable model. And then the legal and
policy section does include a lot of the privacy and security issues,
maybe some State laws that might need to change, involvement of other
commissions or organizations that could help with that area. And at the
very end of the document there\'s some criteria that does help guide us
in making these decisions about each of these options.

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

So are you doing this \-- is ONC doing the same thing for the other
workgroups as well?

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

I don\'t know, I mean this Workgroup, to be honest, tends to lead the
way, so we may share this, if it works, with other Workgroups to follow
the model.

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

Okay.

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

We\'re definitely open to any process suggestions. This is just kind of
a way to gather our thoughts into one document. We\'re hoping it\'s
fairly thorough but if there\'s anything missing we definitely want to
add it and develop it further.

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

I think it is probably going to be hard for everybody to know what\'s
missing without taking it home and spending a little time with it. But
are there any general comments first? We can kind of go through each
underlying header if you will, to do specific comments on this first
round of general \-- of comments, but first any just general thoughts?

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

Just one thought in terms of when we look at how we evaluate each \-- or
questions asked. I think it\'s important it look at how do these
priorities cut across the projects. We\'ve talked about that. We also
need to look at not only which are most important but there might be
some that might not be as important or seem as critical at this point
but you really have to do it in order to do the other things. I mean,
sometimes you have to do something to move on. So I think that needs to
be in effect something we look at as well.

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

Again, thinking about the October 31 meeting, one of the points that Dr.
Brailer mentioned a couple of times, in thinking about expanding the use
cases and the priority \-- the priority areas of AHIC, to things like
population, health and clinical research and a couple others that came
up. We don\'t really know what the elasticity of the resources are,
because when you put in \-- when you put in a new use case, you may get
new resource that weren\'t interested before because you didn\'t deal
with their issue. That\'s, to me, another question that goes along with
that is to say, does \-- and does raising this issue up bring in a whole
other group of potential resources or people, stakeholders that would be
interested in supporting this? I think it\'s something worth using as a
lens. David?

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

This is Davette Murray. To piggyback off that last statement. I think it
also might be important as we make our recommendations if we can somehow
tie it to the overall vision the AHIC was covering at the last meeting.
You know, to show that we are listening to what they\'re doing and
needing.

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

That\'s good. David?

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

Kind of a broad concern and then some more process issues. I\'m still
not clear what we think the model for action or implementation is, for
our recommendations. And if it\'s to hope the AHIC concurs and makes
decisions that affect Federal contractors like HITSP and their behavior,
that gives us a fairly narrow road map of where we can push a domino and
hope other dominos fall. I think we should be explicit about what we
think those dominos are. A lot of these are broad research and
evaluation ideas which are interesting but don\'t tie to much action, to
me. If we decide research agenda is important, we could shuffle that
off. But I would like, if adoption is a key goal of ours and I don\'t
know if we\'ve articulated that. I think we should know what our mode of
action is that ties to adoption and should have metrics that tell us
whether we\'re moving some of the dominos down. And a related thought is
I think we should keep in mind the current year\'s stake and ask
ourselves how much have we done to advance adoption of the registration
and patient history and look for ways of accelerating standing,
whatever, before we go off on to green fields. The process feeling for
me is I hope when we\'re done, that I will be able to say we have three
recommendations, I\'ll know what they are, and crystallize powerfully,
compelling, clear, elevator speech versions, whatever they are, and not
have too many long list of things. And each of those things should be a
high leverage action that almost anyone would understand it would
trigger something we care about.

The last thing in terms of context, we\'ve heard today these really good
presentations which took different slants on the application world, the
infrastructure world, and the mediating role in between the two. I think
we should know which of those three we\'re trying to shape before we
pick recommendations.

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

Excellent thoughts. Anyone else on the phone?

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

This is Myrl, and I just \-- I guess I share having printed this out at
break, this long, long list. It did leave me confused again, I guess,
about exactly what is it that we can do, as David said, what is the
primary focus of our group. And the things that we or AHIC can control
and actually do something about, rather than a number of recommendations
which I think are fantastic for the field but about which, you know, our
group and AHIC will probably not be able to do much. So I certainly
support moving forward in a way that hopefully would help us narrow down
our course of action. And I think the presentations all along have been
excellent and certainly give us a lot of background for our thinking and
form our thinking, but I guess, I, too, would like to see if we can get
a grip on how we can narrow this down into fewer actions that we\'re
recommending that we, AHIC, the Federal Government, can truly take a
lead on.

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

Okay.

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

I wanted to ask David, but go ahead.

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

Well, just to \-- I guess add on to what everyone is saying, and based
on our experience with working on the CMS pilot which I can talk about.
That what comes to me in any of our recommendations is that we could
spend more time on fewer recommendations but do a better job, if\' you
will, of crafting the what is going into those. And that is based on our
experience in preparing for the CMS mandate to do a pilot of the
registration summary with medication history, is the devil as always is
in the details. And we never came up with, for example, what the data
elements were that we had consensus on. So that certainly leaving it up
to CMS and VA had to do their piece, but this group doesn\'t know what
that is and again we don\'t have concurrence on the functionality. The
fact is we needed to have health plans and providers participating, how
many PHRs with that functionality in fact provide access to providers?

So those kinds of details as we were building the project, or the kinds
of things that came out. This group really could have been helpful in
identifying and in coming to consensus on what the resolution would be
and maybe we could spend more time on fewer things and do a better job
of understanding the time frame. So when you say feasible in 2007,
that\'s a really important question. Because there are budget issues and
RFPs and logistics and the relevant things that it takes to get this
done. A bunch cool things but really doing it well.

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

Thinking back to Secretary Leavitt\'s phrase last week which was turn
the crank. He want to turn the crank three more times in 170 some days
since he last told us how many days were left. If we \-- if we do a deep
turn on that crank on this second round where we\'ve got a little bit
more \-- that\'s what I\'m hearing you say, David. That we want to try
to get a much richer output of some very well-spelled-out, very salient
elevator pitch, like you said, things that we can go with. I really
appreciate that. I guess when I think about the downside of that, that
we could perhaps mitigate would be if we can make sure that we don\'t do
anything that inhibits people from moving on without us, and getting
into those green fields, like companies like Intuit are apt to do, as
long as we can provide them with some basic stuff. It seems like that
could go a long way. So David, just if I were thinking about the three
recommendations for example. One of them, you talked about already,
which was the focusing on what we already did, the recommendations
around the registration summary and the medication history, and how are
we going to support that in 2007? And can we have some specific
recommendations about either Federal levers that we want to recommend
get pushed and also encouraging the rest of the world to get alongside
of that through whatever that might be.

To me that\'s \-- that makes lot of stones not forget what we just
finished, and move on. But then the second one would be what few things
are we really going to emphasize in that same sort of vein around like
the medication history, registration summary. And then the third one
might be the research agenda or it might be how do we make sure that we
support the other farther reaching efforts without hampering them? How
can we communicate that this is not the end-all. What we\'re
recommending for this round is not the end of the story of what\'s going
to happen in 2007. We don\'t want to stop it, but we don\'t want to do
anything that would impede it at all either. Is that a first toss out of
kind of three potential areas of focus, are those focused enough or are
they still way too big?

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

That might be a pathway for us to start reducing \-- consolidating our
lists to narrower and narrower funnels. I was thinking with Stephanie
here and the other vendors, we talked to over the month, not just
vendors, developers, implementers, CMS and others, Stephanie challenged
us at the end of your talk to make the data liquid. Creating it where
available to developers. I think that\'s appropriate. I don\'t know if
we had a list of one or two of the findings that government and its
influence can do to accelerate that. That would be a really worthy \--

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

I\'d like to comment on that. This is Kathleen again. I would say I
would love to focus on something live that because of the thing
interoperability stuff, there\'s some legs there. We have the technical
capability of doing it and we are populating PHRs today and we can do
it. Again, if I have the data, I can figure out how to get it to another
source. So I would love to see this group be able to empower the work
that\'s going on through other workgroups like interoperability like
HITSP and if they can do certification and standards and I would love to
see us find how we can remove barriers or create enablers, either
through private policy and security measures like you spoke to, patient
not wanting to enter data. Any of those little things, if we can create
some \-- or make recommendations somehow to get those \-- we\'ll never
get privacy and security issues off the table completely but maybe to
make a stab. I know there\'s separate workgroups with those
particularly, but I don\'t know how enablers \-- barriers \-- I don\'t
know of \-- love to see that come out of this group.

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

We could perhaps make a recommendation then to that group as our peer
group, to help resolve that issue.

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

That\'s what I\'m thinking. And even maybe throw some high level
recommendations saying we understand this is your focus area, but for
consumer empowerment, we see this as of \-- as a key to enabler. We have
to get some of these policy legislative barriers, privacy, security
issues, off the table.

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

Because I think my personal opinion, maybe because I am too much of a
technical nerd at this time. But the technical capabilities are in
place. Already.

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

And I think the standard, a lot of us are watching the standards and
making sure we\'re staying in line, programming to be flexible enough to
make a (indiscernible) to not make a change we can\'t. So we\'re doing
that. And on the back end. Knowing that policy \-- or standard will be
laid down. But it\'s the privacy and securities stuff that we just
don\'t feel like there\'s the really solid recommendation path
happening. I don\'t know if that\'s us, but \--

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

I think that\'s why they created other Workgroups.

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

I agree.

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

So we can say empowered to help us \--

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

So is there anything that we can specifically recommend to that group
that is unique?

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

Maybe on \--

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

Unique to our issues. You know, this whole notion of consumer
empowerment, I\'m thinking about presentation and Ken\'s presentation
and William\'s, to me that\'s a model that I resonate with a lot in
terms of do we \-- can we dare give patients actual control of their
data in and I think it\'s not such a wild and crazy idea. In that
they\'re pretty aligned with their own care and will give up their data
when it\'s right for them to do it. And when there\'s an economic \--
like you said, sometimes there\'s economic incentives to do that and
from putting my Pfizer pharma hat on for a minute, I\'d much rather give
patients total control of their data and only work with people that want
to share with me because it\'s in their interest or they\'re willing to
do it to support the infrastructure or willing to do it for money or
whatever, but I don\'t want to talk to anybody who doesn\'t want to
share their information with me. Period. I don\'t want to have that
responsibility of ever being accused of looking at somebody\'s
information without their absolute expressed consent.

And I think that there will be enough people that want to do it, that
research can go on and lots of good things can come out of that. So I\'m
not worried about that, if they\'ve got full control. I\'m worried about
them actually getting access to their own data, in a way that is usable,
authenticated, that is useful, all the things that you were discussing.
I think that\'s a big barrier for them, extracting the real value, the
real potential value of their own information for themselves. So you
know, is there \-- this liquid data idea, I don\'t know if it goes into
like a second goal or if it\'s part of that first one of the original
\-- of our original one, to say what do we have to do to say patients
should have an expectation that they can get their information from
their providers in this form, in this electronic standardized format,
and they should have a right to be able to give it that way, and not
have to fill out a clipboard. You know, if we got enough framework to
get that done, that would be \-- if I could charge my doctor five
dollars if we made me fill out a clipboard.

\[laughter\]

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

That would probably change things.

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

There is the issue of cost of implementing that for a physician and the
fact that we don\'t have standards to say to every physician practice or
hospital, here\'s how you\'re going to communicate with each other and
here\'s the data element. We\'re working there and it\'s coming. The
CCD, HL7, it\'s coming.

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

Interoperability specification was recommended to the Secretary, you
know, in all its glory. Hope that it\'s not \--

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

Perhaps \--

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

Yes, exactly. It\'s not done.

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

Okay.

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

Yeah.

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

Okay, there\'s just going to be work in progress.

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

So that certainly sounds like something we can ask for and push for.
Because I agree, I mean, I\'ve watched that sausage being made, and I
know how all good intentions, assuming everybody is all trying to do the
right thing, period. It was done very fast, there was not enough time
for full, you know, vetting. Yeah.

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

It\'s not \-- lots needed to be done. So can we \-- is that the kind of
thing that focusing on that, that first round, that first turn of the
crank; that's the kind of thing that we can \-- I hear testing of that?

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

Right (inaudible) we not make that representation, that in fact those
standards that were recommended in fact be tested? Now, this is
Lorraine, sorry. The AHIP \-- yeah, AHIP and Blue Cross Blue Shield
Association are doing a pilot of their interoperability between plans.
And it\'s a dataset, it is not a complete dataset. It\'s \-- for
example, laboratory information is not yet available because that
transaction hasn\'t been resolved yet. Nonetheless, it\'s some
information that is going to be transportable between plans. So it\'s
not a far leap to say that soon other entities like providers could be
engaged in that. But there\'s testing going on around that, and they are
planning to use the standards that are being proposed through HITSP that
have been adopted through HIPAA, so they\'re using things that we said
people are familiar with and there\'s consensus on.

So certainly to encourage that, would seem to make sense as a
recommendation.

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

This is Myrl. And that is the project that we are the third partner in,
and our role is to educate, make aware, to the consumer, to the user, to
be the credible source to encourage people to get to the table to do
these pilots, to test the information that you just described. We\'ll be
doing a lot of other things around it, but just to be clear, that\'s
what we have a formal agreement with AHIP and the blues about.

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

Well, that\'s actually helpful.

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

We\'re really expecting that the testing will give us a lot of
information and very importantly from the user, the user\'s point of
view, as they \-- we try to increase the uptake and then help with
formal focus groups in other ways to obtain information feedback for
AHIP and the Blues to help us all move ahead.

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

Any more thoughts from the phone? Anybody? Brain dead at the end of the
day?

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

Yes.

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

I\'m sorry. (indiscernible) is there any way we can account \--

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

Justine.

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

Justine\'s comments on a ranking maybe? Form of process like how to help
us go through these? I think we have some guidance on the second page,
or third page. Maybe we could rank these somehow, and come back \-- I
don\'t know that we can do all these. Maybe we can. Further develop all
of these. I don\'t know. Parliamentarian procedure, whatever.

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

Well, first, I don\'t think that today is the day to do any kind of
ranking.

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

Right, but something we could take away?

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

So what do people think? Would that be a valuable exercise to put
numbers against these things? I know last time we did a bit of that with
our functionality process and we got such a small number, it\'s really
hard to make that \-- a truly rational process. It may be a good first
pass thing to see what sort of drops out. I\'m still not opposed to it.

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

I mean, that would be a perfectly okay suggestion. Another approach, and
you might see which people seem to like better, would be to have a
couple of folks take a stab at drafting a ranking, or drafting either
doing perhaps doing some lumping and splitting, or rewording and sending
something back that was a potential ranking and having people respond to
it.

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

Which would people \--

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

Which is \-- that\'s how we did the visioning process and that worked
well for that and we also did the ranking for the priority areas and
that was a starting point and didn\'t determine the final result but was
a great discussion tool. So either approach or even both would be fine
with us.

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

Michelle, would you be willing to put out this kind of version up in a
tool that would allow us to put some preferences around them or little
stars or something, and just so we can kind of do, get a sense of the
overall facts about it. I guess I would be reluctant to have that be the
\-- I don\'t think it will be the \-- any \-- means of final thing but
will help inform us, and maybe before Rose Marie, anybody tries to do a
lumping thing, they get some of that kind of feedback.

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

Yeah, that\'s a good thought.

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

And then I guess we heard again from David\'s comments that I really
resonate with is this notion of really trying to narrow, not trying to
recommend a thousand things, but recommend some pretty big \-- some very
specific limited number of recommendations so can we \-- does anybody
have a problem with that idea? That we really try to prioritize in that
way instead of here\'s the ranking of the 25 things we could do, or
here\'s all 25, and we\'re going to do everything from 12 on up or \--

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

Right.

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

To say here are the things that we think are most important, it doesn\'t
mean that the others are unimportant, obviously because we\'re only
talking about three or four, but we really think these things are
critical.

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

Yeah, and to add to what might help us in honing down our expectations
is as we prioritize, is to think about who would do it, how it would be
done and what the financial impact might be. How much would it cost to
do it. Because if you have a budget of some sort you can only do X
number of things, whether it\'s time, resource, staff, you know, for
this group. That might help as part of the criteria.

**[\>\>\
]{.underline}**A lot of it depends \-- for example, there\'s that
Kennedy bill that came out on PHR support and it\'s just a bill out
there, I don\'t think it\'s gotten any traction yet that I know of, but
it\'s got some interesting ideas about incentivizing clinicians to
support the use of personal health record. If that thing got passed, I
would start to check that one off my list and worry about some other
things, instead before and say we have a mechanism that has a fighting
chance of moving the meter of adoption that a lot of the other ones
might not. But so we\'re kind of dependent upon what happens elsewhere.
And maybe use that as one of our caveats that we recognize that there\'s
this thing going on and whether or not we endorse that bill as a
committee, I don\'t know if that makes any sense. But we can say having
\-- we will endorse the idea of having legislation that supports the
adoption of PHRs. I don\'t know if we recommend that either but that\'s
an example of something we might consider.

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

This is Davette. While I think technical aspects are important, I really
do think the policy legislation and law part is just as equally
important to the success of our recommendations.

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

I\'d like to echo what Davette just said. I hate to be the one no person
here, point of view I think the privacy and security will have one
chance to get this right before PHR and EHRs really take off. And I
think it is essential that that is done deliberately correctly.

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

This is Myrl. And I guess my hesitancy about encouraging or saying we
support legislation, is the devil is in the details, and I\'m sure there
are a bunch of us looking at what exactly is encouragement, what are
appropriate incentives. So I\'m certainly not saying not to be
supportive, but I think we\'d have to be cautious about what language we
used, so it couldn\'t be misused.

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

Well, this is Davette, I wouldn\'t necessarily say we endorse as a group
a particular legislation, but say that legislation needs to be in place
to support recommendations for our group. Because I mean, I really feel
that you can have all the technical solutions in the world but if you
don\'t have the information across all these, you\'re going to have each
company, different companies and entities developing different
standards.

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

I think the point is, what would we be saying legislation should address
versus the marketplace, so I\'m just concerned about if someone said
well, what legislation do you want, what would be the provisions, the
policies, that would support our recommendations, I\'m not sure we could
be really articulate about that yet.

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

So we all agreed then that Justine is going to write up all these
recommendations?

\[laughter\]

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

She just walked back in the room.

\[laughter\]

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

I\'m sorry.

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

So we have just a couple of minutes here.

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

A process idea to throw out. What if our homework for each of to us
write down two or three or some small number of next 18 months, what do
we think are the critical levers we can influence to support the
program? And some of them may be on this list and some may not, but
maybe a little higher level of abstraction like you suggest with the
legislation or financial incentives, people may have or the privacy
strategy. People may have \-- that would get us through kind of a
collapsing of that list, two or three most commonly stated top triggers.

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

With the we being \-- the we for that \--

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

The committee.

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

Being the committee, right.

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

But we could do that in parallel with the list we have with detailed
recommendation and we could marry if we got lucky.

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

We giving advice to AHIC?

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

And to ourselves. On a couple of things we think are critical steps.

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

And the, you will send those to Michelle in the next couple of weeks in
preparation for our next meeting and she spits them back at us in some
sort of sorted out way.

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

Right, that\'s fine.

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

Yeah, and that document, too. Both actions.

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

I\'d like to at least get a couple minutes, like I promised, to Stefanie
to be to be able to address questions and we have the time we have to
open up for public comments. And if there are none, we can continue with
our questions with Stefanie.

I\'ll throw one out first and then anybody else, unless you have a
burning one right now. On your last slide you said you want to influence
the industry to provide data to consumers in a standard electronic
format. And I\'m assuming that mostly what you\'re talking about is
financial data for now in terms of your overall tool. So I\'m a
self-confessed long-time Quicken user, all it did was you did have to
put all your data in, but I found that useful because I could print out
any checks and do all at once. I couldn\'t balance a checkbook before
that and it was helpful to me. Obviously as it\'s progressed over time,
it\'s become \-- there is that literally the one push button where all
my financial stuff, not just my banking, but my investments and my
401(k) and all of that come in, and but my sense of that, when I look at
the sites that provide that connectivity, I see to download to Quicken,
get this type, to download the Microsoft Money, get this, and then is
there a standard way now that banks do it with any of the financial
money management personal money management tools, or do you still have
proprietary methods? And is there \-- are you saying differently that
you want a nonproprietary one if that\'s case?

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

So I hear two questions. One is how is this done now in the financial
industry relative to consumer financial management applications and the
second is what are we advocating for health care.

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

Yeah.

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

So there is one, actually the standard for downloading the Microsoft
Money and to Quicken is the same. It\'s actually something that a small
group of architects worked out and then we share. It\'s an open standard
and it\'s shared across companies that want to be able to populate our
applications with that data. And what we\'re advocating for health care
is some way, one way or another, that the same amount \-- that same data
be shareable and available. We are actually building out a way of
connecting to a health plan claim system and then getting a couple of
other data fields, because we find that the dataset doesn\'t answer all
of the burning questions that consumers have. But it\'s a fantastic
wonderful start. All that data is in there. And all we have to do is get
it out and get it in front of consumers and put it in a format that\'s
digestible.

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

So you\'re speaking specifically \-- which X12 standard?

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

The claims, 835 \--

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

Okay, thank you.

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

And what about enrollment? The 834? Eligibility.

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

We haven\'t looked at it yet. But all that data is in there, too. And if
it\'s not useful for what our application is specifically focused on
doing, someone else will want to use it. And someone else will be able
to make excellent use of it to solve another burning point of pain for
consumers. So what we\'re saying is let\'s make the data available.
Let\'s share the data. Because in essence, once that data is out there,
a thousand flowers will bloom about how to use it you will not believe
the innovative things that consumers do in their home. It\'s
(indiscernible) the way you did with Quicken by typing in and making the
best of it. Does that answer your question?

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

Yeah, almost all of it. I guess, you talk about X12, but in your
consortia did you for the pure financial transaction, that\'s \-- is
that an (indiscernible) credited or ISO credited standard or consortia
standard like DICOM would be in health care which is not really an open
standard in the anti-SDO process. Do you know what I\'m talking about?

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

So I\'m not a standards creation expert, so let me say that right off
the bat. Let me tell you a little about how the open financial exchange
consortium worked.

There was a notion by a (indiscernible) what data needs to be changed.
And we created specifications around that dataset. And then we worked
with financial institutions to say can we have it and they said yes. And
then a couple of other big vendors, including Microsoft, said you know,
that is what we could really use and the bank said, we\'re already doing
it one place, why don\'t we do it others as well. And it became a de
facto standard of data (indiscernible). It wasn\'t a balloted process
where we stopped consensus across multiple entities. But basically the
market said this has to be open, and we said, oh, gosh, that sounds like
mine. Let\'s figure out a way of doing that where it wasn\'t going to be
administratively burdensome. The dataset does change over time. And
towards institutions. It\'s not a really, really cumbersome balloting
process. But the results of it, we work with the other big application
providers and the results are published and open.

And anybody can build on the server, the instructions for how to build
it are on the Internet. The trick is, let me be clear, that the data is
safe and secure. It\'s not about understanding what those data fields
are, it\'s not about building the pipes, it\'s about how you \-- how
does a consumer tap on the shoulder of their financial institution and
say, hi, it\'s Stephanie, I\'d like my data for this account, please, in
a way that the financial institution then says to the consumer, hey,
Stephanie, nice to see you again, you haven\'t downloaded in quite some
time, let\'s give you your data now. That\'s the trick to it.

Does that make sense?

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

Uh-huh.

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

I know we have to do public comment, and we can do it offline. I would
wonder what data field the current standards don\'t accommodate? For the
purpose of the health \--

**[\>\>\
]{.underline}**You don\'t have to tell me now \--

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

I\'m delighted to tell you all about that, and it\'s a level of
granularity that will probably be somewhat mind numbing, but I\'d love
to tell you offline. I\'d love to give you the whole stable of data. But
a majority of terms are available and out there. The thing that\'s
interesting is that consumers actually want to understand more about the
condition that the underlying piece of information is solving. Consumers
don\'t separate the claim from what service did I get. Why did I go to
the doctor. And the other thing that is pretty interesting is consumers
don\'t see the world the way we do relative to what my plan \-- it
doesn\'t make sense to them how we\'ve organized the information that we
spit back. So we\'re trying to figure out ways of representing the data
recreating the data that actually unifies the sources from different
places within the \-- eligibility. What is my deductible for which this
claim is pressed against? I don\'t remember, that I don\'t know this
data and you have to have that. It comes from a whole different place in
the health plan, I believe.

The last thing, though, that\'s quite disturbing to consumers is that
the data isn\'t clean right now. Even what they see back isn\'t
necessarily what happened for them. Once we figure out how to exchange
this data in a mass way, that issue comes to light in a huge way. And
it\'s something that we all really, really need to think about. We spend
a lot of time thinking about authentication but also spend a lot of time
thinking about wow; that really the data? And how do we make sure
that\'s right?

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

So Matt, maybe you can open up if there are any public comments.

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

We\'ll address one more question while you\'re asking people to get on
line.

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

Sure, and just very quickly, we might have had some people who called in
because of audio difficulties earlier and were already on phone.
Somebody is on the phone, you only need to press Star-1. If you\'re
following on the Web, you\'ll see the instructions on the screen.

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

Let\'s get one more question and ask if anybody has chimed in.

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

I have another one if nobody else does.

\[lughter\]

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

So in your interviews, when you went around, I don\'t know that you
followed the follow me home \-- did you follow them to the doctor?

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

We did not follow them to the doctor. That is our next phase of our
research.

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

One of the things I think you may find, as dirty as the financial
information is, the amount of stuff that people can retain from, even if
they did get clear information from a clinician, which is a big if right
there, but if everything was explained to them very clearly at the point
of care, what they walk home with and what they really need to act upon,
they may have missed completely. The moment you say cancer to somebody,
it\'s blah, blah, blah after that. It doesn\'t really matter.

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

We didn\'t follow anyone to the doctor and we\'ve heard it countless
times at home, in their living room. That was captured in our big bucket
of have more effective interactions, within the health care system.
People told us, and quite tearfully at times, they think it got said \--
they don\'t know when and how because at the time \-- this is nine
months later but when you bring them back to what was that like, you
know, what did you do when you got home from that visit, and then how
did you track expenses associated with it. I don\'t even remember being
there, people say. I know I learned a lot that day. So we absolutely
validate that.

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

When you \--

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

I think that\'s actually right. We did some ethnographic surveying as
part of another project, and we found that the first \-- the information
given was not clear. Very frequently. And then the \-- you know, the
transmission of the information, you know, was woefully inadequate and
providing information afterwards was enormously valuable to patients who
said I don\'t know what I would have done if there hadn\'t been somebody
to explain what that was all about.

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

And we\'ve had several patients tell us that actually understanding
these before they got in, some of the things they might be told after.
Would have helped them get the bucket in their brain organized better.
Like that they didn\'t even know what to expect from the visit so they
don\'t have the bucket ready to capture the information that they had,
and they said someone should tell you ahead of time that you\'re going
to hear that you need this, this, this. I can think right off the top of
my head of 20 different write-ups of follow me homes where that was
mentioned.

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

Matt, is there anybody waiting?

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

No, we don\'t have anybody today.

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

Okay.

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

We\'ve got a few more minutes left. Are there any questions for Stefanie
or any other parting shots?

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

This is Michelle. Do you think you could summarize our action items?

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

I think bread, milk, eggs. No, wrong list. \[Laughter\] So I think
they\'re pretty much your action items.

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

I know.

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

So basically that you\'re going to take the draft recommendations that
you so lovingly put together and put a frame around them so we can rank
them and send back information to you. Our next meeting is again \--

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

28th.

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

November 28, 11:00 to 3:00.

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

So there it is, okay.

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

Tuesday.

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

I\'m wondering if we can maybe have those returned to her sometime
before, obviously, the Thanksgiving time frame.

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

I can send out a schedule of when we would need things back.

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

Okay.

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

Let us know when we \-- remind us, please, when it comes time, if we
haven\'t gotten back to you. And then the second thing that goes with
that would be as David was suggesting, what are our \-- if we had to
summarize our elevator pitch of top priorities for this next turn of the
crank, what would they be? And then Michelle will take those and give
them back to us on the 28th with some lumping of those together as
everybody says this one was \-- spontaneously came back and pretty
commonly, ask then we can have that as a framework for discussion. I
don\'t think there were any others.

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

I just have one question. Rose Marie talked about a subgroup that would
want to focus on this. Is that an idea that has been dropped?

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

Rose Marie, do you want to wait until we get these things back?

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

I think we probably should if that makes sense to you guys.

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

Since Justine said she wouldn\'t do it.

\[laughter\]

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

I never said that.

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

I think that\'s optional, ranking or have a subgroup populate the list.
But I think the process could work.

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

Okay. Any other thoughts? We\'ll give you a minute of your life back.
Thank you.

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

Happy Thanksgiving.

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

Thanks, everybody.

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

Bye.