[This Transcript is Unedited]

Department of Health and Human Services

National Committee on Vital and Health Statistics

September 17, 2013

National Center for Health Statistics
Auditorium A and B
3311 Toledo Road
Hyattsville, MD 20782


P R O C E E D I N G S (9:08 a.m.)

Agenda Item: Welcome

DR. GREEN: Good morning. Isn’t that interesting how everyone just sort of
sat down and got quiet? I don’t think I have ever noticed that before at one of
these meetings. Welcome back. We have got enough time to do what we have got to
get done between now and noon.

I don’t think I am going to say much about a recap of yesterday. Yesterday
was intense, a little long, and had a lot of stuff in it. I think we will get
the recap done here toward that 11:30 slot on the agenda. I think we are ready,
if we can get the standards letter up, I think we will jump into our action

We have a couple of people who did not introduce themselves during the full
committee yesterday that are here. Justine and Vickie, if you could introduce
yourselves and declare conflicts? There it goes again, another foiled attempt
to move quicker. Okay, Raj, you are on.

DR. CHANDERRAJ: Raj Chanderraj, practicing physician, member of the full
committee and member of the standard subcommittee, no conflict.

DR. STEAD: Bill Stead, Vanderbilt University, member of full committee, no

DR. MAYS: Vickie Mays, University of California Los Angeles, member of the
full committee and member of Pops and privacy, and I have no conflict.

MR. BURKE: Jack Burke, Harvard Pilgrim Healthcare, member of the full
committee, member of the privacy confidential and security committee, and the
population health committee, no conflict.

MR. SOONTHORNSIMA: Ob Soonthornsima, Blue Cross Blue Shield Louisiana,
member of full committee, member of subcommittee on standards, no conflict.

DR. SUAREZ: Walter Suarez with Kaiser Permanente, member of the full
committee and no conflict.

MS. GREENBERG: Good morning. Marjorie Greenberg, National Center for Health
Statistics, CDC and executive secretary to the committee.

DR. GREEN: Larry Green, University of Colorado, chair of the committee, no

DR. CARR: Justine Carr, Steward Healthcare, chair of working group on HHS
data access and use.

DR. COHEN: Bruce Cohen, Massachusetts Department of Public Health, member of
the full committee, co-chair of the populations health subcommittee, no

MS. MILAM: Sallie Milam, West Virginia Healthcare Authority, member of the
full committee, co-chair of populations, member of privacy, no conflicts.

DR. FRANCIS: Leslie Francis, University of Utah, member of the full
committee, co-chair of privacy, member of POPS and no conflicts.

MS. KLOSS: Linda Kloss, HIM consultant, member of the full committee,
co-chair of privacy, member of standards subcommittee and no conflict.

MS. GOSS: Alexandra Goss, program director for the Pennsylvania EHealth
partnership authority and the Pennsylvania Health IT coordinator, a member of
the full committee, the subcommittee on standards, and I have no conflicts.

MR. CORNEILUS: Llewellyn Cornelius, University of Maryland, member of the
full committee and the population health subcommittee, no conflict.

DR. SCANLON: Bill Scanlon, National Health Policy Forum, member of the full
committee and the standards subcommittee, no conflicts.

DR. FITZMAURICE: Michael Fitzmaurice, Agency for Healthcare Research and
Quality, liaison to the full committee, staff to the subcommittee on quality
and the subcommittee on standards.

(Introductions around the room)

DR. GREEN: Do we have anyone on the phone?

DR. WALKER: Jim Walker, Siemens Corporation, member of the full committee,
no conflicts.

MS. GILBERTSON: Lynne Gilberston, National Council for Prescription Drug

DR. GREEN: Jim, you make 15 committee members at the meeting right now. That
is splendid attendance for such a busy season. Jim, we hope you are feeling
better, and perhaps we are glad you are not here.


DR. GREEN: Welcome, everyone. Let’s proceed, Walter, with our 9:15 item, the
standards letter for action.

Agenda Item: Standards Letter — ACTION

DR. SUAREZ: Thank you. Yesterday we presented a draft letter. We received
feedback, and this morning, the subcommittee worked on that and finalized the
draft letter. I am going to go through the letter.

The first thing I want to say is that we have modified the letter consistent
with the recommendations from yesterday. This new letter, we have cut out a
couple of the subsections that we had in the original one and simplified it.

The second major change was that we reordered the letter. Now, the first
subsection of the letter focuses on the recommendations related to ICD10. Then,
the following sections are the ones that we had yesterday. Then, we also did a
number of changes in terms of restructuring the recommendations themselves and
rewording some of them. I am going to go through those very quickly here.

I am explaining here the first page, we didn’t change anything really. These
are the introductory statements. At the top of page two, where we present the
high-level summary of observations, we modify the bullet number two there.

Originally, this bullet was focusing on sort of the larger staying the
course with deadlines. We didn’t focus just on the ICD10, which was the intent.
We now rephrased this to say staying the course with ICD10 codes and combines
deadline. We just point out that it is very critical that HHS remains steadfast
and commits to the October 1st deadline for ICD10 coaches

DR. COHEN: I would suggest changing the order and having that bullet as the
first bullet because that is the bottom line. We want this secretary to know
that the recommendations that we focus on are primarily around ICD10, and that
should be the first thing she reads.

DR. SUAREZ: Great point, thank you, done. The third bullet, we expanded a
little bit. Actually, we combine some of the statements that we had originally
in the second bullet and brought this one down. We are just pointing to the
fact that there are important tail effects, or post-implementation effects, on
each of the mandates. There are interdependencies. Any delay on one affects all
the others. It is important to prioritize, and ensure the right page and scope
and scale and timing of the various initiatives. That is the third bullet

Then, we get into the ICD10 recommendations and observations. We didn’t
really change any of the observations. We just did some small edits. You can
see here, we inserted the word payment equivalencies on this bullet because one
of the recommendations points to that specifically.

Then, we organized the recommendations into three large ones. The first one
is that HHS should continue to emphasize its intent not to change the current
deadline. We didn’t change any wording on those. Then, we took the other
recommendations and organized them into a recommendation two. The wording is
the identical wording of one of the seven or eight recommendations under.
Recommendation two is about testing, and that is the key element here,
establish and publicize realistic and actionable testing milestones.

Then, under that, we organize all the other recommendations. We start with
Medicare fee for service testing strategy, encourage clearinghouse and vendors
to communicate their testing and transition plans. Support and actively
participate in the HIMSS WEDI National Testing Pilot Program, reassess Medicaid
ICD-10 preparedness and address disparities. Then, work with partners to look
at opportunities to use some of the training center and educational
infrastructure that HHS has. We organized, no wording changes in the
recommendations except for those noted here, so that is recommendation two on
testing primarily.

Then, recommendation three is about the sharing of the ICD10-based claim
payment policy guidelines that are aimed at clarifying payment equivalency.
That is the heading of this new recommendation three. Then, we inserted two of
the former recommendations we had there. We didn’t change any of the wording on
those. Pointing to the CMS sharing its Medicare-Medicaid ICD10-related payment
policies. Then, CMS sharing or making available the HCCs. That is ICD10; any
comments from the full committee?

Okay, we will go to the DSMO report and the standards for transactions. We
didn’t change any wording from this point on really except for a couple of
elements here. Recommendation four, the only thing we changed was added, or
later, at the end, so it is not specific to a year, like until sometime in 2017
or later. No changes on this other portion. Those are all sort of reference
points to the transactions and the relationship to ICD10. Recommendation five
continues to be, and we didn’t change any wording here either, identify current
4010 users, and target education and outreach to them, to explain the
implications for not migrating to 5010 in advance of the adoption of ICD10.

Then, the recommendation six acting upon the previous NCVHS recommendations
on acknowledgements, we didn’t change any wording here either. Then, the next
section was on the status of development and implementation of operating rules.
No changes in this introductory part. We made a few corrections and additions
to the bullets. We added proper citation of the authoring entity.

We drafted this new bullet. This is really a new bullet that points to one
of the comments that were made during the committee meeting yesterday, that one
of the other concerns raised by testifiers was the negative impact that
non-HIPAA covered entities, such as practice management system vendors, have on
the adoption of HIPAA standards by providers by failing to incorporate the
required standards into their products. This was a point to note about the
impact that these non-covered entities have on the ability for providers to
meet the standard requirements.

Then, on the recommendations, the two things that we did was, one, we
reorganized, so we moved recommendation seven to be the first one. Before this,
it was recommendation eight really. Recommendation seven is the one about
targeting outreach programs to improve the understanding of the importance of
using HIPAA transactions and operating rules.

Then, recommendation eight, what we did was combine. If you recall
recommendation eight had four points. We combined points two and three. The two
point two reads, the value and benefits of adopting operating rules that apply
to multiple transactions that comprised business processes, rather than
establishing operating rules on a transaction-by-transaction basis, so that
end-to-end administrative and business processes are optimized. Before that, we
have two different points there, but we combined them to simplify and clarify.
That was recommendation eight.

Then, the last two sections where the WEDI report, we didn’t make any
changes except for some correction there. Then, the impact of standards, and
the relationship between standards and health insurance exchanges and health
reform. We thought it was important to keep this portion in the letter still.

Then, our concluding comments, we didn’t change anything there. That is the
summary of the changes to the letter. Are there any comments or questions?

DR. GREEN: Walter, I would like to give Jim a chance to react. Jim, I
suspect that is very hard for you to follow those changes. Some of them were
done about an hour ago here in the subcommittee meeting. The recommendations
themselves that you saw and probably have a copy of, while reordered and
reorganized, are still the recommendations. Is that fair, Walter, to say that?

What has happened yesterday and again this morning in the standards
subcommittee meeting is there has been refinements, clarifications and
reorganizational work, some corrections of grammar context and punctuation.

DR. WALKER: I listened to the discussion yesterday and can follow enough of
Walter’s presentation to support the changes.

DR. GREEN: Okay, thank you. Other comments? I would entertain a motion to
approve this.

MS. KLOSS: I make a motion to approve.

DR. STEAD: Second.

DR. GREEN: All in favor? All opposed? I think I may have cut you off there,
Jim. Are you voting no or yes?

DR. WALKER: I just said I, sorry.

DR. GREEN: For yes?


DR. GREEN: Okay, good. Congratulations, another one done. This next item,
the 945 item about account for disclosures. We need to have a bit of discussion
of this and talk about the plan for, I guess, later in the month. It is still
September, isn’t it? I lean on Walter and Leslie to talk about this. You can
kick this discussion off.

Agenda Item: Accounting for Disclosures – NCVHS

DR. FRANCIS: I think it is actually pretty short and simple. We are not a
co-sponsor, but we are cooperating with tiger team in the accounting for
disclosure hearing.

DR. GREEN: Could you educate all of us what accounting for disclosures is
all about?

DR. FRANCIS: Accounting for disclosures is telling patients, when they
request it, this is under HIPAA, to whom their records have been disclosed. The
original HIPAA did not require accounting for disclosures involving treatment,
payment or health care operations. The High-Tech Act changed that. There was a
notice of proposed rulemaking 2010, I think it came out. It was quite some time
ago. It was early in the high-tech days anyway. The approach there was seen as
quite problematic in many of the comments. A final rule has never been issued.

OCR, HHS’ Office for Civil Rights, asked the policy committee tiger team,
which does these things quickly, to do a hearing with respect to some
fact-finding about what is going on in the industry and what consumers want.
That is basically one of the crucial things about what is going on in the

There was considerable concern that we have a role here, too, at a higher
level, not so much the technical, but a policy side. We are invited as
co-participants, along with the privacy workgroup of the standards committee at
ONC. This is going to be a big group on a virtual hearing.

We have contributed by way of helping to shape the questions that are being
sent out to testifiers. We have also made suggestions about possible
testifiers. I think Walter now has the final list of questions. They were
working on them in the tiger team call yesterday, which took place during our
meeting, so I wasn’t on it. All members of the privacy confidentiality and
security subcommittee and committee staff will be full participants in the
hearing. If there is anybody else on the committee who would like to be a part
of it, it is September the 30th, from 11:45 to 5:00 Eastern time, on
the web. It is virtual. Let me know.

One other thing, we had a lengthy discussion yesterday at our subcommittee
meeting. Sue McAndrew from OCR was on the line with us. We surfaced because we
realized that time is very short, and because we also realized that there are
going to be a lot of people on this virtual hearing. If we are going to want to
ask questions, we need to have it be organized efficiently. We generated a list
of questions that we want to make sure get addressed. Mya is going to circulate
them to all members of the subcommittee. We will use email if we want to add
additional questions.

Sue emphasized to us that this is fact finding; it is not about policy. We
also think that, given the seriously constrained timeframe of the hearing,
there may be some more fact finding we are going to want to do. We are going to
look and see what happens at the hearing. Sue would welcome that from us. That
is a status report of where everything is.

I guess it is fair to say one of the policy issues that we have emphasized
is the importance of the difference between external disclosures and internal
uses or accesses. One of the important roles this committee has already played
is helping the tiger team understand that they weren’t being at all clear. In
fact, some of them were quite confused about whether what the subject of the
virtual hearing was, was external disclosures or internal uses. That is where
we are.

DR. GREEN: Thank you, Leslie. Walter, can you comment?

DR. SUAREZ: The only thing I want to add is, and I really appreciate Leslie
and Linda’s leadership on this. I think it is very important for us to be on
this topic as an advisor directly to the secretary. The only point I wanted to
add is really the confusion that exists out there, not just with the terms use,
access and disclosure, but with the applicability of all this.

A lot of people think that because this is now under quote unquote ONC and
in partnership with OCR, this is only about EHRs and this only applies to
providers. It only applies to things related to meaningful use. The reality is
this applies to everyone, including entities that don’t have an EHR as a
certified HER technology, including health plans, including clearinghouses. All
the covered entities are subject to this.

There is confusion about who this applied to. I think it is going to be
important for us to make sure that we help at least clarify some of those
confusing points. I think certainly, as it was mentioned earlier, there is
still the opportunity for us to ask a subcommittee and ask the national
committee to determine whether we believe it would be advisable to convene an
additional or separated hearing on this topic to add additional elements,
particularly the policy elements that might be missing from this more technical
level hearing that we are going to participate in. I think there is that
opportunity that we should look for.

MS. GREENBERG: I should, expanding on that, mention that the committee did,
in the last month, I think, receive at least one, maybe two letters, suggesting
that it would be appropriate for this committee to hold a hearing on this

DR. FRANCIS: That is what led to our first doing this as a cooperating
group. This is, in many important ways, an experiment about how committees can
work together and figure out what each has to contribute. We have been doing
this in a very help each other kind of way, and we look forward to doing it
that way. I do want also to invite anybody on the full committee, who has
particular thoughts about questions that ought to get surfaced, please do
convey them.

DR. CARR: At the end of the hearing, what is it that we want to know? For
example, what are some of the questions that are being posed?

DR. FRANCIS: Some of the questions that are being posed are what kinds of
requests for accounting for disclosures are actually happening right now? What
kinds of ways are people responding to them? What kinds of technological
capacities are there with respect to tracking, access? For example, do the
current technologies permit identification of roles of people? The hearing is
divided from providers, from plans, from vendors, I think, then from patients.

Probably one of the things that is of greatest interest to our group is, so
what do we know about what patients are concerned about with respect to getting
an accounting of disclosure? Also, what do we know about what kind of a way of
presenting it would be helpful to people? That is an overview of the kinds of
questions that are of interest. There simply may not be enough time to address
all of those questions in the probably fewer than five hours that the virtual
has to devote to them.

DR. CARR: So it is not a gap analysis? The assumption is that all the
technology can track that?

DR. FRANCIS: No. In fact, that is not the assumption. One of the questions
is what can the technology track? Can it track what is valuable to consumers to
have it track? If not, another question that is going to be on the table at the
hearing is, what kinds of alternatives might there be that entities are using,
for example, audit logs? Does that help?

DR. CARR: So we are saying we have a regulation? High tech says you have to
track this, right?

DR. FRANCIS: No, we don’t have a regulation. High tech says that HHS needs
to issue a regulation. We have a notice of proposed rule-making that did not
distinguish between access and disclosure, essentially. I think a fair way to
put it was it was essentially just about access across the board. I think one
reason that it was controversial was that it seemed likely to be very

Another reason why it was controversial was that it seemed likely to not
present the information in a way that would be helpful to consumers. That is
why OCR is kind of back to the drawing boards about trying to understand, and
these are fact questions, what would be helpful to consumers, and back to the
drawing boards about what might be the current state of the technology and

I would also say that, after the issuance of the NPRM, there is a long
period of time for comment. There were many, many, many comments filed in
preparation for the virtual hearing. That comment period closed eons ago. Some
of us went back and actually read a number of them. The comments are up on
Regulations.gov, if anybody wants to. What goes on at this hearing, which is,
of course, on the public record, will be added into the information that OCR
has in terms of deciding. I think the next steps for OCR would be to either
issue a new notice of proposed rule-making eventually or a final rule.

DR. GREEN: Okay, you have been alerted. It is a heads-up. It is a
complicated set of issues, and it is coming back. I think we should do two
things. One is let me ask you, Leslie, to be on point for creating a report for
the NCVHS executive committee about this in any way you find useful involving
whomever you want to. Let’s get this on an executive committee call agenda, so
we can tee it up properly for the November meeting.

DR. FRANCIS: We will need to act fairly expeditiously if we do want to. I
think we will have a privacy call after the virtual hearing to review what we
think the scope of the coverage was and whether we think it would be helpful
for OCR to have a little more.

DR. GREEN: A second thing I would ask, Walter, are you going to be on the
call, too? Let me ask the two of you to just do one thing. On the call, would
you please express the gratitude of the NCVHS for being invited to participate?

DR. FRANCIS: Yes, we will make sure we do that on the call.

DR. GREEN: Okay. We seem to be going back to standards again here. Okay, so
the plan for the roadmap.

Agenda Item: Standards – Plans for Roadmap
– How Policies Converge with Standards to frame a Broader Context of
Administrative Simplification

DR. SUAREZ: We have on the agenda a brief of Standards, plans for a roadmap,
how policies converge with standards to frame a broader context of
administrative simplification. These are linked to the work that we are going
to be doing tomorrow, all day during the roundtable we are convening. You have
received and seen a copy of the agenda for the roundtable.

First of all, I think I want to acknowledge and thank NCHS for hosting us
tomorrow here at the roundtable. Also, for identifying and giving us support in
a person that will be facilitating the roundtable discussion. This is,
interestingly enough, our second roundtable on this topic.

The first one was about a year ago when we convened a roundtable to start
looking at really the new concepts on information exchange for supporting
administrative processes, in light of all the changes that are happening with
payment reform, with health reform, the interaction and integration of
electronic health record processes and clinical changes with administrative
processes, all these things. We think it was important for the committee to
begin to look at really new future forms of administrative changes, and how
they interact and depend on and create some interdependencies with the clinical

We have a facilitator tomorrow. We also build on, and we want to formally
announce it here, too, and make it clear for everyone, we had the benefit of
having a draft of a document that had been developed. In fact, it is a document
that was put together by CMS on the eHealth strategy. It has been presented in
a couple of venues.

We build from that to sort of take some of the elements of that and create
our agenda for tomorrow. Tomorrow, we are going to be looking at what is the
vision of eHealth, and what are the goals of eHealth standards and
standardization. What are some of the key industry trends that are moving us in
this direction of many multiple mandates coming from different directions, but
all really converging on the information exchange, and the need to exchange new
and different kinds of data in new and different kind of ways?

We are going to be then moving down into the development of a roadmap, what
we are calling an eHealth standards roadmap. The intent again, first of all, is
not to use this as a way of vetting or evaluating or assessing a roadmap, an
eHealth strategy, one that is on the table or one that was used to help us
build it, the CMS roadmap. That is not going to be the target or the focus.
Tomorrow there is not going to be a presentation of the eHealth strategy for
CMS or anything like that. That is one very important clarifying point.

We are trying to develop a roadmap for the industry from the perspective of
the national committee that brings together the different factors and forces
and requirements out there, and that focuses particularly on our area of
attention, which is administrative processes. We are not going to touch on the
things that are being driven by the Office of the National Coordinator. They
are going to be attending tomorrow and participating in the discussion because
there are things that interact with, of course, the administrative processes.
Those are elements that are critical to be built into the roadmap that we are
looking at creating.

The first thing that people ask so what is a roadmap? What is it that we are
going to be doing? To simplify the concept, the roadmap is sort of two major
things in my mind. That is how we are structuring it. One is a pictorial view
on a time line the multiple different things that come to play in terms of
deadlines for compliance with things. That is one element of the roadmap, but
that is not the roadmap itself.

The second element is a series of supported documentation that covers the
interdependencies between those elements that are plotted in the actual sort of
timeline. Also, it is the gaps and the opportunities to identify gaps and
issues. Very important, it is the sequencing and the timing of when things are

Primarily, so that we have that as a reference point, we can’t change dates.
We are saying in our letters, don’t change the dates, the dates are set. We
know now those are the dates. We are all working towards those dates, the
current requirements.

We are saying that, in order to add new requirements as we move forward,
because we expect that there will be ongoing new requirements coming up
periodically, that we have this as a reference point so that we can plot the
next sequence of requirements, and see if they are right in the sequence, right
in the timing, in terms of the scoping. Do they fit correctly, and what are the
interdependencies with other things? That is the main goal really that we have
is being able to have that on the table really and as a resource that NCVHS can
provide to the industry.

With that, I am going to turn it to Ob, and I think we are going to try to
frame some of the concepts that we are going to be discussing.

MR. SOONTHORNSIMA: Thank you, Walter. You may recall in our strategic
planning, Justine, was it a couple of summers ago, I forgot now. We actually
started talking about the concept convergence that is coming out of the HIPAA
tenth report. I think it was very clear to us that there were some significant
themes that the industry and all of us were facing at a time, and are still
facing today.

What we often hear for several years now is, number one, we are tired, the
industry, everybody is tired, implementation fatigue. We also often hear that
these things are pretty costly and oftentimes are unfinished. Also, where is
the ROI? If you haven’t completed what you started, how can you achieve, let
alone getting the industry and everybody else to adopt those things that we
implemented or are trying to implement?

That is sort of all the things that we are dealing with. However, we also
hear that this convergence opportunity exists. Where are they and what are
they? For example, we talked about the payment reform. We are talking about
bundling and so forth. They also happen almost at the same time and in
conflicting order, if you will. We also talk about big data, but having the big
data for the greater good is a big challenge. In other words, what are we doing
with the data? Here is a big opportunity for us, the data committee, and I know
we are not the only ones. Everybody else is talking about it and trying to
harness the amount of data that is out there.

This is the context of trying to frame this up. At the end of the day,
triple aim is still our ultimate goal, I believe. Any thoughts or comments

We want to set this up as a backdrop. If you can see sort of in the middle
the slide here, these are the high level stakeholders, if you will. These are
the stakeholders for healthcare. On the top here, you see the top three here
are basically your providers, your hospitals, your physicians and your health

Down here are pretty much the payers. This could be commercial payers, as
well as governmental payers and so forth. Employers here are represented here,
as well. These are the major stakeholders in our ecosystem today in a nutshell,
recognizing that we are not including in here the patients.

Keep in mind, I know that some of you are thinking about the members, the
patients. This is in the context of the people who have to execute, so we have
to be clear about this. We don’t mean to exclude them, nor did we mean to
exclude the communities, either. These are the people who have to implement at
the end of the day.

If you think about the high tech act and the meaningful use, we have
multiple milestones over the next few years, meaningful use stage one, two,
three, four, and one is already in effect right now. ICD10, October 1 of next
year, that is going to be primarily impacting the providers and the payers.
This is actually meant to sit right between these two areas.

Then, you have the HIPAA standard that impacts everybody as well. This would
be 6020, that is coming down the pipe. We talked about that yesterday, actually
it is in our letter, that we don’t anticipate that to happen in 2017 or beyond
that. Of course, we have Health Plan ID. This is part of the administration
simplification, as well. That is happening in October of next year, I believe.

Then, you have the various operating rules. I am sorry. I missed the big
one, the marketplaces. What is this first milestone right here? This is October
1. This is when the marketplaces are supposed to open. This is when people can
begin to shop. Enrollment truly begins sometime after that. The effective date
for these policies will begin on 1/1/2014.

What is this major milestone in the early stage of 2015? That is the risk
adjustment. We can spend more time talking about the 3 Rs, risk adjustment,
risk corridor and reinsurance, to help sort of offset the risks for those
issuers who operate on the exchanges. All of these things are heavy lifting in
and around the country.

Of course, we have operating rules that impact by and large the payers. As
you know, we have claim status and eligibility. That took place the early part
of last year. Then, you have the EFT ERA coming up. Then, you have the
remaining claim attachment. I forgot five more.

Lastly, we also have the claim attachment or attachments out there sometime
in 2016. That is the goal. With that said, there are a lot of implementations
going on over the next few years. While we believe that the marketplaces will
really take off over time, but we don’t know is that you can anticipate some
post-implementation. Regardless what you may hear people say, everybody is
working very diligently to get that done. I personally believe there will be a
long tail just for the marketplaces alone. It may or may not push out the
subsequent phases of the reform itself.

That is just sort of a snippet of different major activities. This is not
meant to be all inclusive where we outline absolutely every implementation, but
just to give you a little bit more of a color behind all these major activities
and how they might impact all these major stakeholders.

The alignment objectives, I think Walter said it nicely, one is we want to
understand the key mandates, milestones and timelines to ensure that we can
effectively execute and adopt. Then, we want to identify what are those
challenges and issues and opportunities for all HHS entities, I should say, and
the industry to achieve the goals. If you think about each and every one of
these milestones having a specific goal or a specific set of objectives that
have merit, but how do we make sure that we overcome issues, challenges, to
make sure that implementation goes well for each and every one of those.

Last point, this is more strategic, can we envision and anticipate any
strategic shifts, such as the risk adjustment activities that are coming out in
the next year and a half? Can we think of some of the ACO, the emerging ACO
entities, payment reform and so forth? Can we think and anticipate how these
roadmap items could be impacted by those opportunities? That is basically how
we are trying to frame this up for tomorrow’s conversation. I will pause right
there and get some reaction.

DR. SCANLON: I want to introduce a couple of things. One is the issue of I
am going to add to sort of your stakeholder list the notion of society. I won’t
call them patients, but just society in general. Speaking for the society here,
we want a very, very different sort of health care system. In some ways, sort
of the elements, the milestones and mandates and timelines, et cetera, have
been sort of promulgated sort of for the existing system. Even though it is
going to change things, it is still the existing system.

I don’t want to change it sort of formally at this late date, but roadmap
isn’t the right word for this. If you actually do a roadmap, what you do is you
go out and you sort of trace the roads. They are there, and what you have got
is what is out there. In some respects, what we want is something new, a
fundamental change in structure.

Maybe what we are talking about is an architect’s vision of where we are
going. Where you are constrained, okay, architects don’t sort of say, we are
going to build this building, but it is going to be 10 feet off the ground, and
there is nothing between it and the ground. They know that they have gravity to
deal with. They have got structural sort of requirements to deal with.

They take that into account, but at the same time, they have visions that
change things dramatically. That is what we are thinking about sort of here, as
well. The role of sort of our committee in some ways as a data committee is
this issue of sort of what is the role of information in this dramatic

The elements that are in law sort of, in some respects, the easy elements.
Those are the kind that you identified, are the things that we know some ways
how we are going to do them. The ones that are to be named later are the things
that the innovation center is supposed to be finding for us to do.

Those are not even yet what you would call a work in progress. They are
ideas to be generated in part. What we really need to do is to be able to, from
our perspective, build sort of the capacity so that we can do those kinds of
innovations as quickly and as effectively and as efficiently as possible. That,
I think, is sort of what our challenge is.

That is the societal stakeholder’s perspective. I think it is one that is
uncomfortable because it implies that the pressure is going to be even greater
than it has been in the past. What I sometimes say to myself is, I am really
glad I am not in the IT industry.

Apple introduced sort of some new products next week. Did it take until
Thursday before people said, what are you doing for me lately? What is your
next generation going to be like? That is the way the world has become is that
everything is under sort of pressure to innovate. I think it is going to be no
different here. In fact, if we are actually lucky as a society, the pace is
going to increase.

DR. GREEN: Bill, while you are at the microphone there, could I ask you to
also comment about, just right off the top of your head, the type of product
that we actually are going to produce here and what you think it ought to look

DR. SCANLON: My sense would be that, in some ways, it is tied to what you
might think of as a preamble, in terms of where we may be going, that we really
want a change in the delivery of care that makes it both sort of more effective
and more efficient. That is sort of taking, as I understand, the health side
off the table because we really are talking about information in this roadmap
or this sort of architect’s plan about sort of the care system.

What are the elements, in terms of change, that we think are going to occur?
I think at one level, there are organizational changes in terms of the
interrelationships of the people that are actually delivering these services.
Secondly, there are changes in the relationships between payers and those
entities delivering the services. The notion of bundling, the notion of
capitation, things like that.

Embedded in that is the information requirements. I think identifying at a
high level, and then sort of being as we move forward, being able to specify
more detail, but identifying at a high level what are the information
requirements to allow this to happen in a way that reduces or eliminates risk
and actually promotes sort of better value. Those are the kinds of things that
I think would be sort of the kind of preamble to this.

Then, from that, the question is where are we? Knowing where we are and
knowing sort of that change is costly, and change is time-consuming, how do we
best manage that change, design that change, so that we can make improvements
sort of in a both efficient and a timely way.

MR. SOONTHORNSIMA: No. I do want to recap some of the things that you said.
You are right, roadmap describes your current path with something, and
something that we are looking at right now is something that is just today.
Today is not working; that is your point.

However, because the way we are mapping these things out does demonstrate
that we do have a lot of conflicting priorities. We do have a lot of unfinished
business. We also have, to your point, new things that are coming down the
pipe. Why not use those new things in the future that we have to do and begin
to, I’m not sure to use the word architect, but frame up. If we can shape and
influence our recommendations in the future, that way we begin to sort of taper
the direction a little bit.

DR. SCANLON: I think in some respects, then what you know is sort of how you
should modify that roadmap in a way that envisions the future.

MR. SOONTHORNSIMA: That is our roadmap for future recommendations, but we
will frame it in the following fashion. I don’t know; I am making this up. Just
listening to your point, one, we may have some principles, a set of principles
that would come up, guiding principles as well, of how we might shape our
recommendation, not just for standards, but for data, as well, or privacy for
public health agenda. Does that make sense? This is not just for standards, I
think. I think this could be much broader.

Second is, in the meantime, we also want to make sure that the immediate or
the very next set of recommendations, we begin to sort of influence based on
the feedback that we get tomorrow and some of the findings and internal
thinking and collective principles that we come up with at the end of tomorrow.
That is what we hope to gain out of this.

DR. CARR: As usual, great simulating, disruptive comments. Going back to the
idea, to our role in terms of data, I think it goes back to a theme that we
talked about at the 60th anniversary and it keeps coming back. It is
the emerging sophistication of the questions that can be asked with data or
could be asked or should be asked. Going back to the disclosure thing, I just
thought it was fascinating that we are not only going to ask can you or can’t
you track it, but we are also going to ask, is it what you want?

I think it is a little bit different from the kinds of questions we have.
Maybe this committee plays a role focusing more on what are the types of
questions that could be asked, and what are the ways it could be answered? I
think there is just so much activity, and there is so much data out there. I
don’t know that we have those moments where we reflect on what could we be
learning, what should we be learning in this moment. Maybe this committee, with
expertise around the table, we ought to be cultivating that expertise.

DR. GREEN: Well, I think we have got a much better idea now about what is
going to happen. We have a larger shared common understanding of what is coming
up and where it is headed. It is right on track with what you told us last
meeting you were going to be doing this year.

I would like to just support what Bill was saying, and I think you mentioned
this, too, Walter, there is a lot of other stuff going on. I want to try to
make that real with just two examples. During that period of time you have left
between now and 2017, this country will see an amazing integration of mental
health services and primary care. You want to predict that because it is
already happening in towns as small as Basalt, Colorado and as large as San

This is not a policy; it is a movement. It is being driven off of what Bill
said. He said the people don’t want the system they have got. A lot of the
providers in the mental health substance abuse treatment world, behavioral
health world, didn’t get the memo that they were supposed to continue to try to
cram what they do for people into the existing frameworks that have failed the
people. Ditto for public health and medical care.

The isolation of medical care and public health from each other is basically
a mistake going forward. That is an example I think of what Bill has in mind.
The data implications that Justine is calling out, when you start thinking
about the data implications for when the public health world and the individual
health care world are working from a similar database, or at least an aligned
data base, and using each other’s data for decision-making, that world is going
to be in creation right across that timeline.

That world that doesn’t know that HIPAA is dictating the timeline, or that
the ACA is or that high tech is. That world is dictating its own timeline
because of the demands of people trying to get some help with their problems.
It is being led by communities that are saying the cavalry is not coming. We
are going to have to accept some responsibility for our own health. We are
going to have to work together.

We have seen all this stuff in our prior work. I really appreciate this
conversation. For me, and I suspect for most of the committee, I think this may
be a sort of a threshold moment. We should understand the gravity and
importance of what you are going to be doing tomorrow and where this is headed.

DR. SUAREZ: This is a very exciting discussion because I think it is
defining one of those other major themes that we haven’t really focused on.
Yesterday, we talked about the two themes that you described. One was the theme
of convergence, right? The other one was the theme of data stewardship. I think
a major theme that we are hearing from Bill’s comments and other comments is
the theme of transformation. I think that is one thing that really we are
watching it happen, and we are trying to influence it in different ways. It
affects us in many different ways.

We are seeing transformation in five or six major areas, the way which
carries structure in this country. It organizes the way health care is
delivered ultimately, and how patients are seeking care and how patients are
expecting to see care be delivered from new forms of delivery, like telehealth
and teleconsultations and use of mobile technology and things like that to all
sorts of other ways like accountable care organization structures. We are
seeing transformation the way care is being paid, and the interaction between
providers and payers, the way in which health care benefits are being
structured and organized.

We are seeing transformation in the way patients are expected now to take
more responsibility about their care. We are seeing transformation in the role
of government actually, in how government takes a new role in pursuing and
promoting and facilitating this transformation to happen. All of these are
transformative events that we really have an opportunity to help, in some ways,
putting some sort of a larger picture of all the things that are happening. I
think they are happening at the same time. They are happening in different
directions. They are taking place, and they are moving in different directions.
We can’t be spectators of it. We have to be actors, and we have to be leading
actors in many respects.

DR. FRANCIS: One of the things that has been fascinating me for quite a
while now is that we have a model for standardization and data protection of
data within the HIPAA world. I mean, it may not be the model that is the
perfect model, but we have one and we are continuing to work on implementing

When we have had all of this discussion with communities, one of the things
that has been very clear is that a lot of the information that they use is
information that never came from the HIPAA world. They are sometimes mystified
when people even think that it might be helpful if they could get or use
information from the HIPAA world.

My really quite serious concern, and actually this was raised by yesterday’s
discussion with Matt Quinn and the FCC, just to give you all another
illustration. A lot of what is going on, both with the improvement of
population health, but also increasingly with individual health, when there is
discussion about individuals taking responsibility for their own health through
vehicles like apps, when there is discussion of individuals, actually even some
of the care modalities being non-HIPAA world care modalities, if you are using
various kinds of sensors or other sorts of things that you manage for yourself.

A lot of what I don’t think we have, either good standards or data
protection models for, is all that data that is out of the HIPAA world. I don’t
think we have interesting models for data migrating from the HIPAA world to the
non-HIPAA world, or vice versa, or for the kinds of hybrids that we heard about
yesterday. I am terribly worried about that, and I think it is a place that, if
what we are looking at is architectures that need to be built, it seems to me
those are critical architectures.

MS. KLOSS: Thank you. I am reflecting on Larry’s question of what do you
envision comes out of tomorrow. Again, I think this is a very big charge to
encompass in one day.

It seems to me that one of the ideas we might go into tomorrow with is
teeing up a vision and a draft that comes back to the full committee in
November for a stage two discussion to benefit from everyone’s thinking, so
that we really do, in fact, produce a product that supports our goals of
convergence. Rather than going into tomorrow thinking, well, we will write a
letter or write a report, maybe we come out of it, teeing up a more formalized
process for November to benefit from everybody’s thinking.

DR. GREEN: Jim, if you are still there, any comments you want to make?

DR. WALKER: I am here, nothing really to add.

DR. GREEN: Okay. I have annoyed you with this sort of thing before, the very
same thing actually. This conversation again reminds me of the Chinese saying
about may you live in interesting times, which I have to say actually it was a
Chinese curse. It sort of feels that way, doesn’t it? I am sort of annoyed with
my parents right now for having me when they did.

This is really going to be a rough ride. We know this, and we are just
trying to figure out how to get through it together to make it better. I think
we are in the good position of being able to hear about the HHS data working
group activities from Justine before we take our break.

DR. JAMOOM: I work here at NCHS. I am in the division of Health Care
Statistics. I work on the National Ambulatory Medical Care Survey, and looking
at some of the effects that health information technology has on physicians
using the HR as unintended consequences, some of that sort of things.

I have a background in medical genetics. I was a genetic counselor for a
period of time, as well as I have done some research in Medicaid clinics. I
have a well diverse background, and I am looking forward to tomorrow and
hearing all about your interesting ideas for the vision of eHealth. Thank you.

DR. GREEN: Anything else? Okay, Justine.

Agenda Item: HHS Data Working Group Activities –
Solvathon Update

DR. CARR: Thank you. This is really just blowing my mind, the whole
conversation today and how it ties in to data workgroups. We have so many
different threads. Let me just tell you where it left off. There is always this
kind of interesting timeline that the full committee leaves and the workgroup
stays here and thinks of interesting things. We are a couple of months behind
our June ideas.

We have come up with a proposal for a solvathon is what we are calling it
now. We will be talking about it today. I am going to educate you on what that
thinking behind it was.

We are looking for a community to partner, to demonstrate a novel use of HHS
data to address a community health-related issue. We are looking for a
community with an articulated need with individuals interested in working on
this in a new way. That is one requisite. Second, we use HHS data, and third,
what we are calling unconventional data, but potentially social media data.

We want to demonstrate an innovated use of HHS data blended with social
media data as a priority by community. The critical elements are that the
problem solving must have the strong support and leadership, just sort of
stating the same thing, must be one for which HHS data can be helpful and
should lend itself to the development of potentially a community user-friendly
tool kit. A very basic example that we thought about was simply the CDC data on
flu, and then the Google inquiries about fever, headache, et cetera, leading to
new information, enhanced information about flu.

We came to this because of the charge to the workgroup. One of the charges
of the workgroup is to make recommendations to promote and expand access to,
and innovative uses in applications of HHS data, to improve health and health
care. Based on our knowledge and familiarity with the HHS data resources, and
secondly, traditional and new information dissemination strategies,
developments and technologies and social media, and three of the needs for data
and information by major participants in the health system.

Then, one of the other charges is just that the working group will monitor
and identify issues and opportunities, and make recommendations to HHS on
approving data access and innovative use. This is just reinforcing what we are
about to do.

I am going to tell you about a community that we have spoken to. Before I
do, our ground rules were that coming out of this, HHS would learn about novel
innovative types of data, Facebook, supermarket purchases, whatever. Then, how
HHS data can be blended with unconventional data, and what are the skills and
resources needed, and whether these data are strong enough to be useful, safe
and secure. That is one sentence, but that is a lifetime of work for the

Then, for the communities, they would ideally gain information about the
problem they are trying to solve, learn more about HHS data, learn more about a
potential role for unconventional data. Then, hopefully get a user friendly
approach or tool kit.

The measures of success would be, first, that the requisites are identified.
You can have team, tools, techniques, translators; we were trying to be clever.
Second, that the benefit to a community user is identified. Just kind of move
on from here.

Let me just jump into the example that we have. These slides were old and it
seems kind of out of date. Let me just jump right ahead and tell you. First of
all, in our endeavor to be so innovative and attract all these forward-thinking
communities, we didn’t use Twitter, we didn’t use Face, we didn’t use anything.
We wrote a letter. There are many different asynchronies apparent in where we
are and where we need to be.

We got two interested parties, and we actually followed up with one of them.
The one interested party that we spoke with is out in Seattle, Kings County.
The person that we spoke with is Michelle Plordi. Her title is deputy director
of Emergency Medical Services. She is a very interesting person who has looked
at things in different ways. One of the initiatives that they undertook was how
to improve mortality of patients with cardiac arrest. Having done that, they
now have looked at, again at their emergency 911 system, and asked questions
about who is not using it and why are they not using. They are concerned about
the elderly, and they are concerned also about non-English speaking
communities, also individuals with chronic conditions.

They are prepared to work with the University of Washington to partner to
look at this. They have some research folks available. They are very committed
to going beyond the traditional ways of looking at things. This whole
experience is a learning experience because, at face value, some of us could
say, oh, that wasn’t what we were looking for. Yet, Josh Rosenthal was like,
oh, the potential is endless. He had a million different ways that we might
take social media data and address this kind of issue.

Where we are today, we will use this afternoon to regroup on where we are
and where we want to get to. We are going to ask Michelle Plordi to join us, so
that we can kind of brainstorm together. Then, we really need to get down to
logistics. If we were to select this group or perhaps continue to look for
another group, what does that event look like? Is it a day? Is it a semester?
What does it look like?

I think what has come more to the forefront is the analysis of the process,
and all the questions that go with it, the things that we have talked about
today. If people can start in the unsupervised data world, and learn things and
bump up against the supervised world, where are the boundaries, and what is the
governance or guidance on that?

I think this could be a very, very important exercise as we walk through it
with our curious group of very savvy and very traditional people who are
learning to talk together and understand things. If we just take it step by
step, just one example and trying to use that, what would that look like? How
do we make the compendium of issues that we want to think about?

Now, we also said that our goal was to make something slick that communities
could begin to use. I think that is ambitious, especially given where we are. I
think the real deliverable will be the HHS learning. What is the realm of what
is possible? What are the challenges that are generated by this, and how do we
navigate through it?

I think I just was so taken by our previous conversation. We are not going
to get the genie back in the bottle. The old paradigm just isn’t going to work.
As Bill says, we need an architect for the future that encompasses all that we
are able to do, and yet, has a structure and protection and governance around

Anyway, it is a work in progress. We will talk today about this one
particular thing. Even as I am listening to the ideas here, we are realizing
that there are innovative areas where things are happening. Maybe the answer
is, rather than us just doing one project, or maybe in addition to, we bring
some of the folks in who have been through it.

For example, we spoke with CDC and learned that, while it is really easy to
figure out flu, whopping cough is more complicated. Whoopi Goldberg is commonly
a term that is used in Google searches and contaminates your data. Whoopee pie
was another one. It seems so simple. There is some very fundamental branch
points that can be challenging.

We are a work in progress. When we convene this afternoon, I think our
themes are emerging. I am happy to take any questions.

DR. FRANCIS: I think it is really interesting to see what is going to be on
the table in Seattle. King County is not exactly a naïve community about
electronic resources, shall we say? You are going to be dealing with a highly
sophisticated case study.

It is also a community that there are a lot of people who have been doing
really interesting work about consumer attitudes about data. I don’t know
whether it’s the same group, but the Want to Be Asked Study about dbGaP and
done with group health of Puget Sound. It is very interesting data.

What they did was cross-correlate whether people were willing to have their
data be shared and their attitudes about that with whether they actually agreed
to have their data be shared. What they found is that people were very willing
to have their data be shared, but that they wanted to be asked. They would have
been annoyed if they hadn’t been, in some way. In fact, notice wasn’t even

It is a community with kind of, shall I say, a lot of richness of both using
and thinking about data use. I think it is going to be a great case study. I am
going to stay tuned for how generalizable it turns out to be.

DR. CARR: I think the working group is a good work in progress. I think that
what is exciting about it is that it is dynamic with each encounter. Even as I
look at the slides that seem so cogent in the spring, and then think about the
conversations that we have had, it may not be a deliverable. Here is the tool
kit; now you can figure out your 911 calls. Rather a much bigger concept about
is there value in enhancing the HHS data with community data. Is there
potential value?

Then, really everything that we do, we have to start documenting each step
that we take. Larry has pointed this out, even in the dialogue, there is
learning and there are issues coming up that resonate very nicely with what we
are talking about in a new world.

DR. GREEN: Go ahead, Jim.

DR. WALKER: Two quick comments. One important product for someone to produce
would be a list of uses, sort of early uses. Flu is a lot easier than whopping
cough. If somebody could come up with 40 things that communities might care
about, that HHS data is potentially useful for, that would serve a powerful
clarifying function.

Second is we need to remember as we are doing this stuff, how many million
Americans have dumb phones, which probably means they don’t use Facebook
either. Be sure that the new architecture or the new roadmap, the new whatever,
is architected so that those people are advantaged, not disadvantaged. The
answer is 35 million.


DR. COHEN: Just to comment also on King County and then a general comment.
King County has a really fascinating web-based query system that is adaptable
for folks to put in their own data, one of the few web-based query systems that
went down that route. We talked about the role of the federal government. I
really liked Walter’s comment around transformation. I think in terms of our
committee, how can we make a difference in helping in this transformation of
the federal role in supporting communities as learning systems.

Essentially, the work that the work group is doing is really converging in
parallel with what we are trying to do in the populations’ health committee.
Whether it is selecting one case study, or finding examples of communities that
are in this space, and trying to learn from them, and then pulling out the
themes and highlights, so that we can make recommendations about how to
integrate this data, and what the role of the federal government is in
promoting the use of these data.

I find a convergence here between where the data workgroup is at and where
the population’s health subcommittee is at, struggling to formulate an explicit
work plan to get us to the place where we are understanding this dynamic realm
community data access and community data use and community data protection.

DR. CARR: I agree, and I think it is enhanced by the direction that Bill
introduced if our role is data. Getting sophistication in how to use data, how
to ask questions, how to think about the right questions to ask to enhance our
care delivery.

DR. COHEN: We had a really interesting conversation on the bus ride over.
Bill pointed out, I think, a really important issue. It was there are two
divergent, but equally important goals. One is really getting communities
better access to data and understanding that. The other is really the technical
analytic support that the feds can provide.

Both of them are really important pieces, but they lead us in different
directions. Sometimes in our thinking, I think we confuse both of those. They
both are very important objectives, but lead us in slightly different

DR. MAYS: I want to kind of pick up on a point that Leslie had started with.
That is in terms of Kings County. It is a very sophisticated group. I think one
of the things to try and do is to understand how and why they are able to do
what they do, or else we are going to have a problem.

First of all, their department of public health is stellar. I mean, Nancy
Kreker’s(?) runs it. They have kind of a social determinants model that they
use. The kinds of willingness that you will see there, you might not see
someplace else. This is one in which we need to document the partnerships
because Puget Sound generates a lot, group health there generates a lot of
research for them. It is kind of where they are located. The University of
Washington is a very big player in both not just doing research, but giving. I
mean, they have a lot of civic engagement that they are known for doing in
terms of some of the research activity.

It is a set of conditions that it is not just the case. I think if we can
also identify the set of conditions, we really will do well. It will say, well,
this is kind of the top of the heap. It is like going to San Francisco or
someplace where you have got Silicon Valley and people who just, again, give
their time to do stuff.

I think if we make sure that this documentation that Larry is talking about
is as integral as the actual activity itself, we might be able to move a lot

DR. GREEN: Justine, any parting comments?

DR. CARR: I am grateful for the opportunity to learn every day I have ever
spent on this committee. It never ceases to amaze me. I think that one of the
most important pieces, I think, of the work that we are doing with the
workgroup is the collective learning. Each person brings a richness and an
expertise that enlightens the other members. It is just a great example.

I am here to say we don’t have all the answers. We have the beginnings of a
plan, and all the input is much appreciated

DR. GREEN: On Justine’s behalf, I want to invite all of you to stay and
participate for as long as you can this afternoon in the Work Group. It will
start at 1:00 in this room, and all of you are invited.

DR. CHANDERRAJ: I have a very philosophical question. I know the workgroup
is trying to identify the factors of health improvement. What I see is we are
collecting a lot of data statistics to improve the health. Are we correlating
this with science? That is usually the basis of the statistics.

For instance, rushing people to the emergency room and opening the artery
has shown to be useful in due to balloon time in several communities. Recent
data is showing that this has not affected the mortality. There are two studies
in JAMA recently showing this quality factors that studies that have shown to
improve health have not shown any benefit of improving the quality of health

What I am trying to address is we should try to have good science to
correlate with what we are trying to achieve by statistics.

DR. CARR: This captures the fundamental tension of this workgroup and I
think the fundamental tension of the emerging big data world. In some ways, big
data has been able to reproduce the five year tamoxifen survey in an afternoon
of predicting who would benefit by how long post-breast cancer they took
tamoxifen. There is tremendous value with that.

It is also true that big data could be measuring Whoopi Goldberg when they
meant to be measuring whopping cough. I think that what has been the challenge
of the workgroup is that we have people that are deeply immersed in the
statistics world, and we have people who are in the kind of Wild West of new
data. I am telling you, take one year to get us to meaningful conversations,
the same language, the same terms to understand.

What I have taken away from it is that the new world is a dynamic two-way
thing. Does this seem right? Look at this. Oh, no, let’s consider this. Does
this seem right? Just kind of hypothesis generation and pushback, so it is a
different kind of learning from the area under the curve, carefully controlled.
There is convergence in between.

I think that is the issue of how much can this soft data give us new
perspectives. It is never going to replace the randomized controlled trial, but
it could potentially help us think differently about a problem that we were
constrained about or didn’t have other dimensions.

DR. GREEN: Good point, thank you. Back to Leslie. You guys are trying to
avoid having a break; I can tell.

DR. FRANCIS: I think that one of the things that has become also clear is
that there are a lot of different kinds of uses. I mean, Raj’s point that what
communities think they want to know may not be what is most useful to them.

Another theme that has been really, I think, running through the working
group has been that there are a lot of economically beneficial uses of data.
They may not coincide with the needs of the public health or population health
community. They might, but they might or might not.

For example, data that are used to look at quality of care in a community
might be economically beneficial, as well as health beneficial data that are
used to figure out who you don’t want to have on your insurance plan. Where you
want to set up your office might be economically beneficial to certain data
users, so there might be real incentives for wanting that data, but not at all
congruent with some of the other goals that a community might have. I think
that is fascinating and attention. I will just stop that observation.

MS. GREENBERG: Before I go to the mundane, I am just sitting here thinking
really how fortunate, I think, this committee is. I am fortunate to work with
you. If you think of this morning, there are certain things that the committee
has to do, is required to do, asked to do by the department. The letter that we
did on standards is just a very good example of that. It picks up on about four
or five different types of mandates, whether it be the HIPAA mandates, the
operating rules, the work with the DMSOs, all of that. I know the department is
really very grateful, the work that you have done on this and will continue to

Also, the department has given this same committee the opportunity to have
these kinds of discussions and to explore these much less concrete areas, but
tremendously important ones. It is part of your mission also. The Office of the
Chief Technology officer has supported this committee. I think if Jim were
here, he would agree with me that I feel sort of vindicated that we convinced
them, don’t set up something separate. Let the national committee try to work
with this because it is so important.

I think Raj pointed that out and several of you have said that, that this is
done in the context of an environment in which people understand standards,
they understand statistics, they understand the health care system, all of the
wealth of knowledge that you all bring, but also are willing to be disrupted,
as we say, and have people such as Justine and Larry, et cetera, who are
willing to lead all of this. That is just a reflection I was making as I was
sitting here.

Now, going to the mundane, we need to know how many people need a taxi and
what time today. Justine, we missed you last night. Fortunately, recognizing
you weren’t there, we were able to negotiate several separate bills because you
weren’t there, and they certainly didn’t want me to deal with it. We did
observe that we had to find some new way to operate in your absence.

If you have not signed your 450 and returned it to Nicole, you can give it
to Jeanine, and she will give it to Nicole. Please do that. If you are not able
to sign it because you need to get some information back when you get home,
just let us know that.

DR. GREEN: We will recommence at 11:00

(Brief recess)

Agenda Item: Reporting Outs from Subcommittees and
Working Group, for Further Updates, Clarification as needed

DR. GREEN: Welcome back. We are starting about 10 minutes late here. I think
there were about 18 important conversations that occurred in the break. It was
a very productive break. Who is our first volunteer committee for reporting
out? Since Linda and Leslie are here, I think they are our volunteers.

DR. FRANCIS: You have already heard part of our reporting out with respect
to the accounting for disclosures. We also had a lengthy discussion with Sue
McAndrew about other issues that are HIPAA-related or high-tech act-related
that might be in our bailiwick. The most interesting one for her is that they
have not even really gotten very far at all, and they would love some thinking
about the sharing of civil monetary penalties.

The high tech act requires HHS to develop a methodology for sharing civil
monetary penalties with people who have been harmed by breaches. What kinds of
harms, how do you measure them, how do you figure it out in economics terms for
CMPs. I think they would appreciate us doing some thinking about it.

That is sort of more in the committee’s traditional HIPAA, kind of like the
sorts of things that standards does. Then, we have been talking about primarily
where we want to go on committee uses of data and data stewardship. That is the
real convergence theme.

In particular, we are interested in looking at transparency and
accountability. We are interested in looking at data use agreements. We are
interested in working with HHS on the questions that are raised by small area
mosaic data and de-identified data, and re-identification issues and risks.
That is a quick synopsis of what happened at our meeting yesterday. Now, I will
turn it over to Linda.

MS. KLOSS: Just to go a little further on where we go next with roundtable
on community, I think we settled on revisiting our earlier thinking about
developing some kind of primer to expand upon the framework for stewardship,
bringing in examples, good practices or case studies to some extent. I think
where we left it was that we are going to develop a development plan for that
kind of work product, and figure out what the budget and resource requirements
would be, and get that presented to Marjorie. I think that would a takeaway for
us to expedite a work plan to get that next iteration of the stewardship.

DR. GREEN: Marjorie, do you have any questions of them?

MS. GREENBERG: No, I have encouraged them to do that.

DR. GREEN: Sallie and Bruce?

MS. MILAM: I will start. We have talked about distribution of our summary of
the roundtable that occurred in June. Be expecting an email from Debbie, and
please share that with all of your friends and colleagues and list servs. It
will point them to the NCVHS homepage that has the summary on it.

It is also already going to feedback tool participants, so know that those
folks will get it. As you send our your emails, keep a list of where you are
sending the summary and feed that back to Debbie, so we will have an idea of
who has received it and where else we need to send it.

On behalf of all of our subcommittees, Linda will be presenting some
high-level information and thinking around the roundtable to this HHS data
counsel, and asking them for feedback, where we should focus, what needs do
they see, where are they engaged, where are they providing technical
assistance, et cetera. Probably position us for a deeper conversation at a
later point, should that be helpful to the council.

Before I turn it over to Bruce, I have an announcement. My job has
absolutely been going crazy. I am staying on the committee, but I have asked to
step down from co-chairing population health. I don’t have the time that is
needed to put into this leadership role, so I know that Larry is looking with
Bruce to fill this position. I will leave it to them to make any further

MS. GREENBERG: I just wanted to recognize the leadership role that Sallie
has held, and her wise counsel, which I know will continue.

DR. COHEN: That I rely on all the time. You will surely be missed from
co-chairing this. You have really been a great leader and guide for me, so I
really appreciate it.

Other things, most of the discussions over yesterday and today somehow
relate to moving forward with the objectives of the population health
subcommittee. In addition to what has already been mentioned about the
roundtable dissemination plans, this morning we talked briefly about the
solvathon. We will know more about how the data workgroup and the population
health subcommittee will converge on that, I think after today’s meeting.

The third big area, which I think ends up evolving into a theme for the
entire committee, how can NCVHS help provide direction to the federal
government as the role of the federal government supporting communities as
learning systems is changing, or how can we help push that change. We have lots
of ideas around selecting case studies and presenting our learnings from that,
having potential hearings from communities to better understand their issues
around data access and data use, sort of a continuation of those conversations.

Vickie had one suggestion earlier to me that we should consider essentially
choosing a group of communities, for instance, community health centers, and
beginning our discussion with them to see how they access data, how they use
data, what the specific gaps are and what else the federal government could be
doing to help promote their use of data. Selecting a predefined group of
communities, and work from that point of view to write up these case studies
and understand learnings.

I think the challenge ahead for us, between now and November, is essentially
go through these wonderful ideas and select our priorities for focus, and begin
developing a work plan about how to engage communities in this idea of
understanding how they use data, how they access data, how they use data and
what the federal role is in this interaction, and how we can make
recommendations to improve the federal support for these activities.

DR. GREEN: I think you have almost done this; you want to do it again? Tell
us what you are going to do.

DR. SUAREZ: This week, as you all know, the National Health IT week and
there are so many activities going on. I just actually got a message, I passed
it to Linda, Leslie and Sally, about the announcement by ONC just today about a
new portal, a new resource called Resource for Meaningful Consent. It is an
interesting concept, of course, and a very important one as it talks about
eHealth and talking about eConsent, and working in that space.

No new activities, just to recap. We are going to be working tomorrow on the
roundtable, so it is very exciting work. It is important to clarify that this
is a roundtable, not a hearing. We are not going to be drafting recommendations
out of the roundtable because it is not really following the appropriate
hearing process that we use to develop this. We are intending to use the input
from the roundtable to prepare some documents.

As Linda pointed out, one idea might be to create a visioning kind of
picture, if you will, a graph of where we want to go. Then, organize something
for the next iteration of this roundtable. Again, tomorrow is the second one.
The third one would be maybe next year, something like that. That is one

The second activity is the HIPAA report, so we talked about it already. We
are going to be working over the next two months in developing that. The third
one is the planning of this hearing in November on public health data
standards. Those are sort of our three most immediate priorities right now.

I do want to note, of course, that we are going to be looking at what is
going to be coming out in terms of the next round of HIPAA, high tech and
ACA-related requirements. Those are fortunately not going to come until
sometime in the first quarter of next year. That is what gives us this time
between now and next quarter to finish this other activity. That is an update.

DR. GREEN: Okay. Thank you, subcommittee co-chairs. First thing, I want to
ask all of you to grab your phones if they are on the table and just put them
in your hand or someplace else. Particularly for someone calling in for this,
those phones going off are really loud. Just lift them off the table, if you

Okay, so a couple of quick reactions. One is to remind everyone, we have an
executive committee. The executive committee is comprised of the co-chairs of
these three committees. Me and Marjorie, I guess, is that the full membership?

MS. GREENBERG: Well, and the liaisons from the department, and of course,
Jim. Justine is a liaison from the working group. The voting members are you
and the co-chairs.

DR. GREEN: The way we operate is we do things like we have done the last day
and a half. We have a report out like we just had from the committee co-chairs.
Then, we have a busy executive committee meeting between now and next November.
We need to have that one earlier rather than later, to prepare for the November
meeting. I am talking about a teleconference call of the executive committee
and the liaisons.

To prepare the agenda for the next meeting and get things set up, and to
adjudicate who is going to do what and that sort of stuff. That is going to
happen. We have quite a bit to do on that virtual meeting, based on what we are
hearing here.

MS. GREENBERG: We will send out a poll or whatever, but I leave, I believe
it’s October 9th, for my last WHO meeting, so it should be before

DR. GREEN: We will be aiming for a pre-October meeting as executive

MS. JACKSON: I was going to follow up with a query to the subcommittee
chairs right now to determine if they were going to be actions, what the
actions would be. I didn’t know if this would be a good time.

MS. GREENBERG: Sure, yes, if there any actions planned for the November

MS. JACKSON: I say this as a preface because the November meeting is always
so notoriously fast and hitting against us right now. You mentioned the timing
for a call. I see that call happening the first week in October. We will follow
up because next week is the last week in September, end of our fiscal year, a
lot of things culminating and decisions and things for that. We will set up a

DR. GREEN: By action items, you mean is there going to be a letter, is there
going to be a report that has to be approved.

MS. JACKSON: Just to get an idea of the kind of time on the agenda because
there is only like four to five weeks between meetings.

DR. GREEN: I didn’t hear any.

MS. GREENBERG: The HIPAA report, I think possibly will come forward.

DR. SUAREZ: For recommendations, yes, absolutely. It will be ready for

DR. GREEN: Anything else? I think that is it.

MS. JACKSON: There are a lot of information items that will be going on the
agenda, too. This has been very helpful, thank you.

Agenda Item: Remarks by the Chair and Feedback from the
Membership on NCVHS Strategic Implementation

DR. GREEN: I don’t know how many of you like evolutionary biology, but I
really do. I am sort of a sucker for it. We are evolving as a committee. One
way evolutionary biologists think about this is we are hard-wired as human
beings, Homo sapiens as species. We got the way we are over a few million years
for a reason. Your DNA is sitting in the room because of the way you are built.

That means that you outcompeted other people, and you got advantage and you
ate more than they do, your ancestors did. Somewhere in our mid-brains, we have
features as a species that promote our survival as an individual, and protects
our family and our tribe.

I know this is a little crazy, but one way to look at what we are trying to
do is we are trying to get out of our mid-brains and into our forebrains on
this committee to use our knowledge and our understanding to work on new
problems and new ways, while we are hard-wired to not do that because it
threatens us as individuals, it threatens our expertise. It might make us
irrelevant. We might have to change, all that sort of stuff.

This is also what the health care system faces. The health care system has
such a vested interest. It is so lucrative for so many. It is so
underperforming for so many. These wonderful ideas about how it could be better
run straight into midbrains everywhere. Then, it doesn’t go very well.

The committee, I believe, is making progress toward this. Remember, we use
the word convergence in two ways. We talk about convergence in what is going on
with data, data usage, health care reform, all that sort of stuff. All that
stuff, trying to see how that can converge into a bright new wonderful world.

We also use it about our own structure and function as a committee, where we
are trying to converge our own work. It is my estimation and opinion that as
this meeting draws to a close, we are making progress on our own convergence,
but we are not quite there. We have issues that are owned by each of us as
members, and we have issues that are owned by subcommittees that are very
important. They are valid. They need to pay attention, and our structure
assures that right now. It gives position, voice and exposure to the privacy
issues and the public health issues and the standards issues and the industry

We are trying to make a little step here. I want to express optimism that
November is going to be our threshold event. I think we are going to come out
of the November meeting with laser-like direction for the population
subcommittee. We are going to come out of there with clarity about where
privacy and confidentiality’s homework is, and where they are actually headed.

With that clarity from those two subcommittees, then it will be possible to
see how that links to the standards work. We just might be ready to converge as
a committee around this stuff. We will see.

Just a statement of optimism that we might be making some progress on taking
on what is very ambitious. That is the other point I wanted to make. You have
not failed again to demonstrate that your appetites substantially outstrip your
time availability to do the work. That is understandable. We also outstrip our
staffing and our staff support.

We must continue to be vigilant and attentive to taking on the budget, and
we have to be reality-based. That means making choices about all these
wonderful ideas, and also ranking them and sequencing them and that sort of

As you have heard me say before, I think my job is just to help the
committee get its work done. I want you to know that I am totally dedicated to
that and will be doing so. Another process point, so with Sallie needing to
back out of the co-chair role, the way the committee handles getting co-chairs
appointed is we talk to the present co-chairs, the chair and Marjorie, and we
huddle. Then, we bother somebody and persuade them that it is what they were
born for or whatever. We will jump all over that and anticipate that we will
deal with that transition issue for Sallie.

I want to add, Sallie, my personal thanks and regrets. You have a stunning
way of gently cutting to the chase. I have a problem; I like to cut to the
chase, but it is usually not all that gentle. You are much better at that than
I am. You strengthen us because of that. I am relieved that you are not saying
that you have got to resign from the committee, but we fully understand.

What I would like to do now is sort of a customary ending to the meeting
that I am trying to stimulate. I would like to run the table and invite each of
you to offer any reflections, any thoughts that you have in your mind, any
parting words where you say I can’t leave without calling this to the
committee’s attention. It is a wide open invitation for you to share what you
want to share.

Last time I think I said do it in three words or less, but we have got
enough time today for you to actually say a few sentences, if you are so
inclined. Bill, if it is okay, we will start this way. That is to my left, and
that is not necessarily a political statement. We will start over here on the
left and run the table, and end up on the right.

DR. SCANLON: My three words are role of government, as I maintain optimism
that your vision is accomplished in November. As that is being done, though, I
think one of the things for the committee to think about is what is the role of
government in accomplishing what we envision?

I say that because sometimes government is perceived as very powerful. I
actually have sort of seen too many instances where it falls short. It is
either the fact that its powers are relatively limited in many instances, or
that its direction isn’t necessarily on target. Changing direction on
government’s part is one of the hardest things to do. It is an incredible

When we are talking about what we want to accomplish, think very carefully
about government’s role, and particularly the federal government’s role versus
the state’s and local governments. That was going through my mind a lot these
few days.

DR. CORNELIUS: The three words I would offer are clarity and vision. We have
had a lot of conversations. So many things happening in front of us, yet I
think we can do our job best when we focus on being simple and elegant.

MS. GOSS: I am looking forward to November because I am very committed to
the transformation, or as I like to view it was the revolution that we are
going through right now. I think that there is a tremendous number of
complexity in this brave new world that we need to figure out while we are
trying to bridge today’s broken, but yet functioning, and highly invested in

I really want to see us achieve a new health care world that really allows
us to balance the patient preferences, the technology adoption and usage. There
is a lot of diversity out there that will make our job even much more
challenging if we are really going to make a dent in this new world.

MS. KLOSS: I always balance the pragmatic, what are the priorities? What can
we do with a steely eye toward how we can help the industry get through the
huge changes in the next 12 months? Are we doing things that really support
change and transformation?

DR. FRANCIS: I have got one word, cooperation. I think probably the
experiment of not having subcommittees meet at the same time has been one of
the most important process things this committee has done. I mean, just to give
an example of yesterday afternoon, what it enabled us to do was focus all of us
together on the population side of community health data use. Then, on the
stewardship side of the same thing, with the same people in the room, but with
clearly delineated, we need to be worrying about this and we need to be
worrying about that.

I think that is a real innovation in how the committee works. I think we
will see some of the same thing with the data workgroup this afternoon. I also
hope, and I firmly believe we will, see some of the same thing with ONC and the
policy and the standards committees over there.

As for content, I am just going to go back to the point that I am
increasingly fascinated by how clinical medical information in electronic
medical records, and more generally, the HIPAA world, is such a limited piece
of both individual health and community health. How the separations between
them even have become problematic in a lot of ways. I think a major role for
this committee is going to be to think through that larger context over the
next few years.

MS. MILAM: My three words are listen to communities. Suggestions have been
made about focusing on certain groups of communities that may already exist. I
think we need to talk to communities before we even pick those out.

We know what privacy laws and frameworks are in existence today. We know
exactly where the gaps are, but we don’t know that the people who are in that
space want those gaps filled or how they want them filled. I think we need to
talk to those people and find out if they view themselves as having a gap, and
marry that up with where we know they exist. Find those sweet spots for where
we have a good marriage for moving forward.

DR. COHEN: My words would be culture and focus. I think the culture of this
committee is changing to a place where our role really is geared towards
understanding how the federal government can support communities. That is
phenomenal because that is the space that I want to be in, and that is the
space where I think this committee can have a huge impact.

Focus, there are just too many good ideas. We need to figure out what we can
do, whether it is in the short-term and create priorities for the short-term,
while putting aside and recognizing our long-term vision, as well.

DR. CARR: I would say disruption is good. I think that we are getting much
more nimble in thinking in disruptive ways. I think it helps us.

MS. GREENBERG: I have three words here, produce, innovate, dream. Then, I
have a few reflections on what people have said. Would Justine have thought
that disruption was good when she was a chair?


DR. CARR: Not being the chair is liberating.

MS. GREENBERG: I couldn’t resist that. Regarding communities, it is really
true. We had a subcommittee way back when. We are not going to talk about
Garland Land now, we are going to talk about George Van Amburg. He chaired a
subcommittee on state and local data, and it was really the closest we ever
came to focusing on it. I think it is a new era, and that is good. It is coming
at a good time when, at least at this point, the NCHS is really collecting more
data that isn’t just national than ever before.

Regarding what Leslie mentioned, I wanted to give credit to Debbie Jackson
because form follows function, and process is very important to often drive
changes. Debbie is the one who really pushed for having these non-competing
subcommittee sessions. I think it has borne some fruit and will as we go
forward, as we work towards all the convergence things. The role of the
government is the ultimate question, which is being debated not just in this
room, but obviously in the whole country. It is interesting to watch, but it
something I agree with Bill we need to think about.

DR. SUAREZ: My words are, I think, transformation, relevance and leadership.
I think transformation, we talked about it already throughout the two days, I
guess. It is becoming even more clear that that should be a major theme for us,
as well, because of the second word, relevance.

I think we have to be very mindful of the responsibility that we have as a
committee, and the relevance that we need to continue to play in the activities
that we do. I think we have been fortunate, some people may say no, but the
direct responsibility of HIPAA. That has given us very strong, concrete
significant relevance in the industry. To the point that people actually come
to us to say we need this because we are the body that provides that kind of
guidance and advice.

I think the third word is leadership. I think we need to pursue more
actively our leadership role in industry across the areas that we work on. I
think we have opportunities to show how that leadership has been exercised in
the past by, I am going to borrow one of your words, dreaming. Maybe it was
more than dreaming; it was visioning. We envisioned sort of this whole concept
of a nationwide health information network in many respects, and help define to
a point that we actually, as you pointed out yesterday, Marjorie, were the one
that recommended the creation of the Office of the National Coordinator in many
respects. That is the kind of advice that shows leadership that is
transformative and that keeps it relevant.

One interesting point I want to make, and it is something that is Farzad has
used in the past to describe health IT. There is always this challenge between,
well, there is this work that the Office of the National Coordinator is doing,
and the National Committees on IT Policy and IT Standards. The way he described
IT is basically sort of like in the body, the arteries and the heart. They are
the ones that serve as the conduit. IT is purely the mechanism to take
something from one point to another. That something is what is important. That
is data and information, and that is us.

In many respects, to follow on that analogy, we are the blood that goes
inside those arteries that are being transported by IT. Now, the arteries don’t
say where we are going with data. We have got to think about that as the
ultimate policy level. That is always think that IT doesn’t drive policy. We
keep saying that, and probably repeat it as a cliché. I am very
concerned by the fact that IT, in fact, is actually leading and driving in many
respects policy.

I think we need to bring back our leadership to push hard on the policy
side, and make sure that it provides that balance of direction and
complementary between technology and policy.

MR. SOONTHORNSIMA: Perhaps three words, chaos, opportunity and inflection
point. What do we mean by chaos? The slide that I presented earlier talks about
all the mandates, all the major changes like health care reform, health
insurance exchanges, marketplace payment reform.

At the same time, opportunities like within those initiatives. Again,
mandates, health care reform, health insurance exchanges, payment reform. I
think it is our job to really look for those inflection points along the way.
Some of the points may have already passed, but acknowledging what those missed
opportunities are, and making sure that we don’t lose sight that we do have the
work product, and we are empowered to make and shape through our
recommendations what those future strategic opportunities are, amidst chaos and
leveraging the opportunities.

DR. MAYS: I am going to reuse a reword. It is excitement, transformation and
impact. The excitement, it is very hard for me right now to kind of do this
overview because I am so excited about the afternoon, I can barely kind of sit
and contain myself. It is like I can barely wait to get to it.

I think that excitement is because where the workgroup wants to go has a lot
to do earlier, as we said, it is kind of like weaving itself into the fabric of
our overall work. It is kind of like a marriage of kind of a stuffy statistics
part with this kind of chaotic and uncontrollable and kind of energetic
newness. That is just right up my alley, so I love it.

The transformation is, for me, kind of like when you brought it up, I was
like, oh, it is already taken, but it is a little different. It is that we are
transforming ourselves because I think we have been working in spaces and ways
in which we are now doing it different, to adapt to the demands that are on the

We typically have been kind of focused within the department. Now, it is
like being a partner with the department to deal with the outside. The demand
at that level really requires us to transform the way we think and work, and
who we reach out to.

I think probably the next level of transformation I am going to hope is that
we start utilizing these technology tools to help us to be able to even work
differently. We will see about that one; that is aspirational.

Then, I think the last thing is impact. That is where I have my concerns. I
think that we are being who we are in the sense of great ideas. I think we are
being who we are in the sense of wanting to help everyone. I think we are going
to have to really bite the bullet and have some priorities of the order in
which we can help people. To figure out, given our resource environment,
biggest bang for the buck. It either is biggest bang for the buck, or it is
that those in the worse shape.

It is kind of like when we used to talk about Healthy People 2010, we would
talk about better than the best. Sometimes you have to select a group, and you
have to go do it in terms of determining who is going to get the most out of
it. It may not be the worst group off all the time. Better than the best is
that we don’t want to just make everybody equal, but we want to figure out what
is the level of what we are striving for and how to get people to that.

Our hard work is yet to come of making those decisions because I think we
want to help everybody. I am in the same boat. As soon as we suggest something,
I am adding to it. I think we are going to have to really kind of discipline
ourselves and just make some hard decisions.

DR. STEAD: This is my third meeting. I am still a newbie. It is clear to me
I am learning a lot with each of these sessions.

As I have talked to many of you individually as we have had chances, and as
I have listened to this discussion, I have begun to sort of jot out what I
think is a straw person of a framework of what a new work plan for the
committee as a whole might look like. This is just a vision. It is a little bit
of an architect’s vision, not of the health system, but of what the role of the
data committee might be. It is just one straw person, and we might then think
of, well, what would be a more useful one.

I think we need some such holistic vision if we are going to come out of
this evolutionary biology that I think Larry so aptly describes where we want
to. Although convergence has many dimensions, I think the big enchilada we have
got to come to grips with is the continuum from public health to health care.
Really understanding this is, in fact, a continuum.

Historically, it has been two silos. I think these two silos must be brought
together from a data stewardship perspective. At one end of the continuum, we
need ways to stratify the population by risk to provide appropriate
interventions at a community level, at an education level, at a prevention
level, where those strategies are appropriate to the match, the risk and the
benefit, and the scale of the population that it is being applied to.

Then, we need ways to progressively stratify subpopulations for more
intensive interventions, always matching up the benefit, the risk, the cost, as
we go through that process. We need data to drive the decisions and the
feedback with the course correction. This committee, I think, is about that

Coming from the other end of the continuum, go to the far end of it with
precision, personalized medicine, in essence, you are tackling the same problem
with similar kinds of approaches. How do we manage each member of a very fine
grain subpopulation as a member of that subpopulation, and as a member of the
other subpopulations they are members of.

I think at the heart of this evolutionary biology, we have got to try to
shed our historic roots and actually think of this as a continuum, working at
very different scales. It seems to me we sort of agreed our charge is to
provide HHS with the long-term view of data stewardship and measurement to
improve health. I mean, that is really what we are. We talk about being the
data committee.

I think we have got to now step back, and I think all the things that you
have been doing, or we have been doing, you got it started before I got here is
the committee began to work more and more as a committee as a whole. It has
been to sort of step back and say, how do we rethink data and measurement
across these very different scales?

I think we need to come up as a committee with a set of coordinated, yet
parallel, work streams which allow us to go through this. I just sort of
thought I put out four potential work streams. The first one would be to take
one example such as the obesity epidemic about which there is all sorts of
information at all sorts of different levels, and basically say what data is
needed to guide decisions and to assess trends at cascading scales.

Start with population, then come down to community environmental scans.
Then, family and genetic risk, then individual risk, then remediation of early
pathology, then remediation of chronic disease, then acute intervention. That
is really a cascade. If we could get an example of what data looked like in
each of those stages and what trends looked like, I think that would help us
see the fact that we are really working at different scales. In fact, it is a
converged problem.

A second work stream would really be to assemble a framework of approaches
to repurposing data. Just some examples, I think one is a framework that makes
explicit the measurement bias in different sources of data, so that we can
actually think about how we leverage those biases as we work with the different
sources. Our national surveys, our birth and death records, our EHRs, our urban
data sets, our personal apps and data streams, each of those have different

In electronic health record, the frequency with which different types of
data appear relate to the frequency with which the acuteness of somebody’s
illness or the frequency which they seek health care. It actually has nothing
to do with their underlying problem. If we don’t look at the data with that
bias in mind, we will conclude all sorts of crazy things. That is true of each
of the data sets.

Another piece of the framework would be how we use modeling to let us show
how to assemble data from different sources, so that we can get data on a
national scale, and yet leverage it at a community scale. The work John Graves
at Vanderbilt has done about access to primary care, and really showing that
commuting routes are as important as where physicians or other nurse
practitioners, et cetera, have access to primary care. Those kind of models are
key to repurposing our data in a way that makes it actionable.

I think minimum necessary as it applies to each of these, it is really an
ethical construct. It is not simply a policy constraint, so that would be
another work stream. Third work stream, really which I think where I keep
hearing from the community work is how we develop a tool kit to help
communities to use data to guide decisions and to track trends.

In essence, we have got to have a way to help them define the problem they
are trying to solve. To keep sources discreet so that implicit, biased meta
data, notice, et cetera don’t conflate. How you assemble data to address a
problem, and then provide data and related things as solution sets, something
like that. That could be another work stream that built off, if you will, the
work of the previous work streams.

The fourth work stream really is around the standards work. The roadmap for
standards, coming if possible at the end of the day, not just up from the
current mandates, but down as the rich conversation earlier, around the value
milestones that we want to drive for. Another work stream in there is really
how we rethink standards, what standards look like in a world where you are
dealing with rapid transformation, rapid innovation.

I just think if we could begin to get some such holistic framework of how we
could put our work together, that might help accelerate Larry’s evolutionary
biology. Those are my thoughts from my first three meetings.

DR. CHANDERRAJ: I have very little to say. The most important thing I would
address is how burdensome it is to focus our discussion on the stakeholders in
pushing this mandate through. I am really concerned about the incentivizing the
stakeholders. There are more penalties rather than incentives for pushing this
mandate. I am a little concerned; these stakeholders might be forced into
something and produce data that is not valid.

I think the ONC’s talk, which I missed, and also for the disclosures, it is
very burdensome for the physicians and providers to tell which patient has
received what information and where the information was sent to. Like for
billing purposes, we send progress notes to our billing agents. We won’t have
that information.

Should we be telling this to the patient that we sent this information to
the insurance company? They get angry at us for providing this information to
the insurance company which was privately disclosed to us. That is what I
wanted – the burdensomeness of the stakeholders and how not to penalize
them in such an early phase of this game of pushing this mandate through.

MS. JACKSON: To repeat some words that I learned from John Lumpkin and
others, stay to where the puck is going, which is what you are doing. Looking
at this agenda for next November, populations and standards, John was talking
about the left and right brain. I am going to make sure he sees this. This is
such an evidence of evolution of where this committee has come from, when
whence it has come, and forward and going on.

DR. GREEN: Thank you all. It is time to adjourn. My words would be basically
just gratitude for the opportunity to be here with folks like you. There are a
lot of people that pay $400 or $500 an hour for the opportunity to hear what I
just heard. It is like a graduate course crammed into 22 minutes. I just want
to express respect for all of you. It is an amazing group of people.

You know I like to collect my favorite quotes from this meeting. By the way,
don’t forget the Federal Communications Commission when you think about other
partners. Matt said our box is interference. Now, there is a hell of a
sentence. Our box is interference. It sounds like a mother to me or maybe a
teenage child; I don’t know.

Leslie said there is a scary area of intercept out there. You can turn that
into a t-shirt, I think. Justine said there is the supervised and the
unsupervised worlds. Bill here at the end said the big enchilada is bringing
together public health and health care.

I have got a lot more, but it is time to go. Another silly thing that has
been going through my head is an old, old song. It dates me quite a bit. I
heard it off of a Barbara Streisand final album. The name of it was the Woman
in the Moon. I don’t know if any of you know this song. It starts off with, I
was warned as a child of 13 not to act too strong, to memorize your lines and
move as directed. Then it ends up, at the end of the song, it is the title. It
says, you can hold back the tide, but you can’t hold back the woman in the

To a very large extent, that is just what we talked about. We are not going
to hold back the woman on the moon. This revolution, as someone called it, one
of you said you liked to consider it a revolution. It is underway. We are going
to write it some way or another, but we don’t get to not do it.

We will see you in November. Thank you for the great attendance and

(Whereas, at 12:03 p.m., the meeting was adjourned.)