[This Transcript is Unedited]

THE DEPARTMENT OF HEALTH AND HUMAN SERVICES

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

December 1, 2010

Marriott Washington Hotel
1221 22nd St., NW
Washington, DC

Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030
(703) 266-8402

CONTENTS

P R O C E E D I N G S

Agenda Item: Call to Order, Welcome, Review of Agenda

DR. CARR: Good morning everyone and welcome to NCVHS Full Committee meeting.
I will start by saying I am Justine Carr, Chair of the committee from Caritas
Christi, Steward Health Care, no conflicts.

MS. GREENBERG: Good morning. I am Marjorie Greenberg from the National
Center for Health Statistics, CDC and Executive Secretary to the committee.

DR. FRANCIS: I am Leslie Francis in law and philosophy at the University of
Utah. I am a member of the full committee and I have no conflicts.

DR. WARREN: Judy Warren, University of Kansas School of Nursing, member of
the committee, no conflicts.

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

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

DR. FRIEDMAN: Charles Friedman, liaison to the committee, from the Office of
the National Coordinator for Health Information Technology.

DR. EDWARDS: Brenda Edwards representing NIH and sitting in for Dr. Bob
Croyle. I have no conflicts.

MS. GREENBERG: Thank you. Welcome. Thank you for coming today, Brenda. Only
members have to declare conflicts. Though we staff are always conflicted.

MR. PARK: I am Todd Park, the Chief Technology Officer of HHS and happy to
be here this morning.

MS. PRITTS: I am Joy Pritts. I am the Chief Privacy Officer, ONC, HHS.

MR. LAND: Garland Land, National Association for Public Health Statistics
and Information Systems, member of the committee, no conflicts.

DR. OVERHAGE: Marc Overhage, Regenstrief Institute and Indiana Health
Information Exchange, member of the committee, no conflicts.

DR. STEINWACHS: Don Steinwachs, Johns Hopkins University, member of the
committee, no conflicts.

MS. MILAM: Sallie Milam, West Virginia Health Care Authority, member of the
committee, no conflicts.

DR. MIDDLETON: Good morning, Blackford Middleton, Partners Healthcare
System, Harvard Medical School, member of the committee, no conflicts.

MS. VIOLA: Allison Viola, American Health Information Management
Association.

MS. SQUIRE: Marietta Squire, NCHS, staff to the committee.

MR. BIZARRO: Tom Bizzaro, First DataBank.

MS. KANAAN: Susan Kanaan, writer for the committee.

MS. JACKSON: Debbie Jackson, NCHS staff.

MS. SAVEKAS(?): Mauris Savekas, AMA.

MS. JAMISON: Missy Jamison, NCHS staff.

DR. BICKFORD: Carol Bickford, American Nurses Association.

MS. JONES: Katherine Jones, NCHS and staff to the committee.

DR. SUAREZ: I am Walter Suarez, member of the committee and no conflicts.

DR. CARR: Before we get to our agenda today, I want to take a few moments to
say a few words about Cynthia Sydney. The last time we were here Cynthia was
sitting at the table with everyone else and doing all the last minute things
that we invariably end up needing to do with a smile on her face and just a
wonderful, collaborative, generous spirit and as most of you know Cynthia died
very suddenly, a couple of weeks ago. I for one — I think all of us feel her
absence very much today. We worked very closely in the Quality Subcommittee and
every time I got off the phone I marveled at her patience because the things
that we would ask for at the last minute, the meetings to be set up that were
impossible, the materials to pull together that were scattered about and she
would — I know she would probably be rolling her eyes on the other end of the
phone, but nevertheless in her voice was her usual congenial, collaborative
lovely way. I think we were all enriched by her role with us and her spirit and
her generosity and we miss her very much. We have sent our thoughts and prayers
to her family.

MS. GREENBERG: If I could just thank the committee for your outpouring of
sympathy and condolences and heartfelt comments that we received after Cynthia
died and we did share those with the family and I know that it meant a lot to
them.

Another thing that I just wanted to let you know was I think her last job
for the committee or at least visible one, was staffing the first day of the
quality subcommittee and then she wasn’t feeling well and Katherine Jones
suggested that she go home and she was very reluctantly to do so, but she told
Katherine she really loved working with this committee. I wanted you to know
that.

Agenda Item: Updates from the Department

DR. CARR: This morning we have a number of guests. Joy is going to give us
an update on privacy issues from ONC and then Todd Park has joined us this
morning and thank you so much. We are very excited that you are here and
everyone here did their homework I know and view the community data initiative
video and also some did extra credit work by viewing the October awards
ceremony. We are excited to hear about that, but I think we will begin with
Joy.

Agenda Item: Privacy, Joy Pritts, ONC

MS. PRITTS: Good morning. My report this morning is going to be fairly
short. It is an update of where we were from the last time. And I will
primarily address the issues that I call the outward phase in privacy and
security issues as opposed to what we are doing programmatically because I
think that is what is of most interest to this committee.

We have received a number of recommendations from the HIT policy committee
which we continue to process within ONC. Our goal is to have some of those
recommendations. We are trying to address them as a package not an isolation so
that they make some coherent sense and I think our target date for having some
resolution on those is probably for the whole package and moving forward is
probably early next year.

We continue to get the policy committee continues to work on privacy and
security issues particularly at the Tiger Team level which then sends its
issues of course up, its recommendations up for the full committee to forward
to us.

They currently have addressed recently transparency which is basically how
information is presented to consumers about how their information is shared and
whether that is adequate under the existing systems.

We continue to have what I would call somewhat of a little bit of an issue
of identifying that we have a lot of protections in place now and that we are
trying to focus on people on where the gaps are and what needs to be improved,
not reinventing the entire wheel. I think this group has been pretty good about
being brought back to those basic concepts.

In addition they are addressing provider identification. They were asked to
address this primarily from some of our programs and from what I would call an
organizational point of view. By that I mean if you are having one computer
talk to another computer, what do you need to have to verify that the systems
who are talking to each other are indeed who they say that they are. They have
not drilled down to the level of a provider authentication within a health care
system although I believe that they will be asked to do that by some of our
groups.

Next, December 9, which is coming up quite quickly now, is the Tiger Team is
having a public hearing on what they call patient matching. And what that is is
the accurate way to match information with the correct patient. This is
sometimes called patient ID, but that term can be a little controversial. They
used a longer term which describes what they are interested in doing which is
making sure that the right patient — the right information is attached with
the right patient. That is pretty much what we are doing with the Tiger Team.

And we continue to work with the cross agency, a task force on HIT. In
particular there is a cyber security work group there and one of the focuses of
that group has been on trying to find ways of shifting the burden of security
from the end user, the provider farther up the chain so that when a provider
logs onto a system, they aren’t the ones who have to do all of the security
work. It is something that we expect that as people who use computers on a
daily basis and who do not update them on a daily basis, we suspect that this
is going to be an area that is going to be problematic for providers and it is
one that is getting quite a bit of attention right now.

We also continue to work with the other programs in HHS in particular some
of the health care reform efforts that will involve a collection and use of a
large amount of data such as the health insurance exchanges and the enrollment
for work group.

And that is where we are right now. Thank you.

DR. CARR: Joy, thank you. Very helpful. One question. Can you say a little
bit about the interaction between the state’s health information exchange
initiatives and ONC? In other words, as they are developing things, are they
checking their approaches with recommendations coming out of the policy group
and the Tiger Team?

MS. PRITTS: The cooperative agreement is fairly broadly written with the
state HIE programs and does require them in their plans to address privacy and
security in accordance with the framework which was set by ONC a number of
years ago in accordance with law of course and those plans are being evaluated
within our office. We are having an all grantee meeting soon where we have a
number of sessions set with all of our grantees to discuss privacy and security
approaches.

I think it is quite clear to everybody that we are behind on this issue and
have been for a number of years on privacy and security. It is an issue that we
have talked a lot about over time, but have not reached conclusion about
because we really didn’t have to in the past. And with ARRA it has become clear
that these are decisions that now have to be made.

DR. CARR: Is there the sense that they will ultimately be convergence that
models that were developed best practices will be able to be shared kind of
thing?

MS. PRITTS: They are in the process right now of forming community of
practices for best practices in privacy and security and in a lot of other
areas. We are doing that in all of our grant programs.

I have been involved in a number of community practice organizations and
sometimes the challenge there is making sure you have enough people participate
who have actually been through the effort so that they can share their wisdom
with the others. It is a little difficult in this area because there is limited
expertise and what we have is spread fairly thin among a lot of these different
projects.

DR. CARR: Other questions for Joy? We appreciate you taking the time to come
by. Thanks very much Joy and thanks for all you are doing.

Todd, welcome.

Agenda Item: Community Health Data Initiative – Todd
Park

MR. PARK: Good morning. It is a great pleasure to be here today. And
actually hopefully the less I talk and the more you talk the better. We love
for it to be a very interactive conversation. How much time do we have this
morning?

DR. CARR: We have a lot of time if you want to use a lot of time. Chuck is
going to give us an update, but — 10:15.

MR. PARK: Wow. Fantastic. Very wonderful. All right. What I thought I would
do — I am a little under the weather so I apologize for the raspiness in my
voice. I would love to take you through an overview of the Community Health
Data Initiative and its current status and then open it up for discussion.
Would that make sense and would actually love to answer questions along the way
as well. Don’t wait until the end if you have a question and of the
presentation.

Is everyone here familiar with our open government plan, the Federal
Government’s Open Government Initiative. For those of you who aren’t it was one
of the first things the President did after being inaugurated on literally his
first day where he issued an order, directed the Federal Government to become
more transparent, participatory, and collaborative. Transparent meaning
published data that helps the public hold the government accountable and
generates social benefit. Participatory and collaborative meaning basically
have the government engage much more actively with the world outside government
to help take on the challenges the government is helping to take on.

What actually happened with the Open Government directive is unlike previous
pronouncements that were similar in the past around reinventing government or
changing government, et cetera. It is something that the government is actually
taking incredibly seriously at multiple levels with a whole bunch of action
happening. It has largely been outside the public eye maybe because it is just
too boring and too prosaic. But for those of us in government it is incredibly
exciting because it really does represent in a lot of agencies a real
transformation how government thinks about itself.

One artifact of this progress is Open Government plans that every cabinet
agency actually published April 7 of this year and has subsequently revised.
Ours is actually found at HHS.gov/open. I would highly encourage you to check
it out. It is really wonderful and very concrete set of steps that HHS is
committed to taking to help make HHS more transparent and participatory and
collaborative. It has the full backing of the secretary and deputy secretary
and it is wonderful to actually have that level of engagement and also the
White House as well.

One of the things the secretary says is that if you think about the things
that HHS really wants to help do like help transform the health care system,
help improve public health, help improve food safety, help combat pandemics and
so forth that really the optimal way to do that is through publishing data and
collaborating very actively with the outside world. If you don’ do that then
you are really not going to do those core missions well. Really open government
to us is not just another thing that we are doing. It is actually the mode
which we really want to do and are doing all the things that we need to do.

A flagship initiative in the open government plan is something that we are
calling the Community Health Data Initiative which is really the brain child of
Bill Corr, the deputy secretary, and I have been working very closely with him
on how to actually craft it and make it roll forward.

The whole idea is actually to try to leverage the power of HHS’ data in
every more effective ways and efficient ways to help improve health in the
United States. This committee knows better than anybody on the planet the kinds
of data that HHS had, just an unbelievable array of data of all manner of
topics related to health.

A traditional way of leveraging government data would be for the government
to basically build a giant website, publish say a Mac with statistics on
communities and that is actually a really valuable thing to do. But actually we
thought that an even broader and deeper and more powerful play would be to
actually take a page from the weather and specifically the play book that NOAA
has been running, the National Oceanic and Atmospheric Administration, with
weather data.

I think as everybody here knows NOAA supplies virtually all weather data to
America which actually I didn’t know until recently. And what they do is they
take this data and they publish online increasingly in XML format, but
downloadable, machine readable, free of charge and without — constraint in
continuous supply. And then a dizzying array of innovators actually inside and
outside the government, take that data and turn it into an incredible array of
uses and products and services inside that benefit the American people,
everybody from weather researchers to weather.com to the weather channel to
iPhone weather app developers to nightly weather newscasts and the sheet in
your hotel room that says it is going to rain tomorrow. This is NOAA data
manifesting itself in lots of different places helping people make better
decisions and helping to improve the welfare of the public.

We said well what if actually instead of HHS thinking that we have all the
data and let’s just build all the apps of the data ourselves which HHS isn’t
necessarily good at and certainly can’t do all of, why don’t we actually make
our data much more accessible, much more available like NOAA and actually help
catalyze the emergence of an ecosystem a much broader, much more active
ecosystem of supply and use of that data and sort of triggers a cascading wave
of public benefit similar to what is happening with weather data.

What we did was we actually brought together on March 11 a group of about 45
public and — innovators meeting convened by the Institute of Medicine. And
they were a combination of two types of rock star. One type of rock star were
people like Ed Sondik and Don Berwick who are just incredibly deep health care
and health data people who have gotten more about health care in the last 10
minutes than most of us will ever learn for the rest of our lives. That was
one.

The second class of rock star are people like Tim O’Reilly who has never
been to a public health meeting in his life, but who is incredibly passionate
about and incredibly gifted at how you take data and change actual lives of
people with that data. For those of you who don’t know Tim O’Reilly he is not
the George Washington of the web, but probably maybe the Thomas Jefferson
perhaps of the web. He is instrumental in the spread of the World Wide Web and
helped coin web 2.0 as a term, open source software as a movement and is just
very passionate about the power of data.

And interestingly Don Berwick and Tim O’Reilly who were both giants
obviously in their respective fields and never meet. They didn’t even know who
each other were. And at the intersection of those two classes of rock star
magic act — happens when you take disparate disciplines and rock stars in each
and basically innovative thinking. We said is this idea of HHS as the NOAA of
health data an idiotic idea or is it one that actually makes sense. And
actually the group said no, actually it makes a lot of sense. And the vision
should be basically HHS and others making data freely accessible to the world
obviously staying well clear of privacy trade secret confidentiality
considerations, but basically making data broadly available.

And then encouraging a broad array of innovators, foundations, companies,
researchers, entrepreneurs, government agencies, local folks, et cetera to take
that data and turn it into applications used by consumers, patients, health
care providers, employers, government agencies, mayors, civic leaders,
journals, et cetera to help make better decisions, to help increase awareness
of health, to help — improve health, and to help inform those actions. That
was the basic play. Release data — innovators, turn it into really cool apps
they can use — used by the public and — across the public to help improve
health.

What we then actually did was have an impromptu call at the time, but we
were so excited and we were so — not be at a meeting where you basically talk
a lot, people are excited and nothing happens because it just kind of
dissolves. We said okay. We will check with the secretary, but we are pretty
sure she will be cool with this. On June 2, beginning of June, we will hold a
big public meeting at the Institute of Medicine co-hosted by the secretary and
Harvey Fineberg and whichever one it is can actually build an act that you want
to showcase that day will showcase it because actually through the course of
the day this group of folks that Don Berwick and Tim O’Reilly has brainstormed
about 20 different classes of application. It is like community health maps and
dashboards and search engine integration, health data and various other things.
And actually we said if you can build one of these apps that you have dreamed
of, we would love to showcase you at this big public meeting at the IOM on June
2.

What happened next was an explosion of innovation. We actually took a bunch
of the data that we have talking about, put it on a central website, the
Community Health Data Initiative website, made it easy to find, easy to
download, easy to work with and said here it is. We put it out actually a week
after March 11 and we said to the innovators talk to your friends about it,
talk to your friend’s friends about it and see what you can do. And they
proceeded to do a really incredible set of things.

Less than 90 days later on June 2 we had our big, huge meeting which a lot
of you have seen on YouTube, Community Health Data forum that was co-hosted by
Dr. Fineberg and Secretary Sebelius. It actually made the cover of Modern
Healthcare. There is a really good article about it. And if you haven’t seen
it, you can go to YouTube, search for Community Health Data Initiative and
watch the video of the plenary session which is about 2 hours, action packed I
promise you, which actually demos about seven of the coolest apps that actually
got build or developed in that 90-day span.

One interesting stat is that YouTube video has nearly 13,000 views at this
point of a 2-hour video on HHS health data so is actually equal to I think a
Jonas Brothers’ Argentina concert video which is saying something. It really is
something that is getting a lot of buzz and the video is a wonderful
encapsulation of the day.

DR. FRIEDMAN: Question. You said you wanted to be interactive. How were the
coolest apps determined?

MR. PARK: Very unscientific process basically. What we want to do — there
were actually over 20 applications that were either brand new or were new
features on existing applications that got build. And we actually wanted to
show a cross section of different kinds of uses. And actually I will show you
that cross section right now. Not all of them, but just a selected subset.

One — this is actually my favorite one. It may not have been the most
technically flashy of what was actually shown, but actually felt like it was a
real powerful objective space. This is actually something called the Network of
Care for Healthy Communities and it is effectively a joint venture between a
technology company called Trilogy, Berkeley’s Healthy Communities Institute and
the National Association of Counties. And the actual dashboard has been around
for some time. They built a turbo-charged version of it for June 2 leveraging a
bunch of data.

And what it effectively is is a software service offering that any county
can utilize that deploys a community health dashboard website, public website
for that county. It enables you to customize what indicators you want to
actually show that informs your county in laypersons’ terms. It actually
explains what each indicator is. It tells you where you are versus benchmark
set by your county public health official, what the trend line is.

Even more coolly than that, it actually connects you to an inventory of
promising practices which have been curated by the Berkeley Healthy
Communities’ folks of interventions in other communities have executed or are
engaging in to help move the needle on the indicator you care about and it
classified in about three buckets. One is — stuff that is rock solid evidence
base stuff that has some emerging evidence and stuff that seems like a good
idea, but is not yet in this space, but very, very interesting.

It also connects you to an inventory of pending federal and state
legislation that impacts that you care about. It enables you to advocate for
what you want with respect to the legislation.

Also if you are an individual just looking for help, it connects you to
resources in your local community of how you can get help getting fit,
achieving healthy weight, smoking, diabetes. It is a really wonderful community
health information and action dashboard. It is actually delivered in a very
efficient way and actually as we will talk about in a second is beginning to
already spread across the country.

DR. TANG: What is the data source for that?

MR. PARK: It actually mines a whole bunch of different data sources. It
actually mines a bunch of data that we have made available. It is also actually
the California CHCF’s data and other data. It also actually enables local
public health officials to upload their own data as well.

DR. TANG: So the example in San Francisco’s example they have a number of
produce markets or fast food — what is that kind of data come from?

MR. PARK: Actually it is a good question. I don’t know if that — is that
part of the USDA food atlas?

DR. TANG: I don’t know.

MR. PARK: The USDA food atlas actually turns out to have been one of the
popular data sets we actually put out there. And the USDA actually put it out
there some time ago.

Here is one interesting punch line. A lot of the data we put on our
Community Health Data Initiative website, the initial one we put out a week
after the meeting, a lot of it was actually data that had been public for a
very long time. It just hadn’t been in a form a developer could use. It hadn’t
been easy to find. And one interesting testament to that is we brought in a
crème de la crème Silicon Valley to start thinking about this
stuff. None of them knew — none of them to a person knew that any of that data
even existed. They were shocked by both the breadth and the depth and the
quality of data that had been built over the years. USDA food atlas is one
fantastic example which has an enormous amount of incredibly powerful data
about access to healthy food and there is more data actually coming from USDA
along those lines as well.

Another punch line actually is that the datasets the people are interested
in are not just health care datasets, but maybe even more than that, data on
things like access to food and other determinants that are very powerful that
people —

DR. GREEN: Can you just keep talking about this a little more? Let’s get a
little more granular. About how many datasets did you put up from about how
many federal agencies or departments or something like that? And given what you
just said what was the difference maker? If these had been published for a long
time, what was it that made the difference?

MR. PARK: It was actually in my opinion a very modest website. It was
literally a web page on the CC website and we put up 10 to 15 datasets like
hospital comparators — how we put up the data that we supplied to the match
kind of health rankings, David Kendrick’s group, community health data
indicators as a downloadable dataset which HRSA has worked with CC to compile,
Healthy People, USDA food atlas, so on.

These were really initially community health oriented datasets. We have been
expanding now actually as you will see in a second to broader sets of data that
we are actually going to be publishing. But for this initial experimental phase
those were really the datasets we put up there. And I think the difference is
that actually it is incorrect to think of the Community Health Data Initiatives
delivering those publishing data. The correct way to think about the
deliverable isn’t even actually a specific set of apps. The correct way to
think about deliverables is the catalyzation of an ecosystem. It is an
ecosystem of people and organizations that make data available that translate
that data that turn that data into usable applications that are accessible to a
much broader array of people than an Excel spreadsheet with a whole bunch of
numbers in it which is not going to be something a consumer or an employer or a
local mayor is possibly going to use.

And then actually also critically actively cultivating and sparking use and
conversation about these applications which use the data among the
stakeholders, consumers, employers, providers, mayors, public health officials.
For example, at this meeting at the IOM in March we had not just data experts,
but we had Nancy Brown from the American Heart Association, Valerie Brown, the
head of National Association of Counties, Chip Johnson, the mayor of Hernando,
Mississippi who is doing actually really interesting work on combating obesity,
heads a provider system, et cetera.

To me actually publishing the data is about 10 percent of the work.
Marketing the data, if you will, to the right groups of innovators and
stakeholders so they begin to use it is actually 90 percent of the work. And if
you asked me at the beginning of this, I would have just said it is 50/50. Not
even close. It is 10/90.

One of the things that I think is an important lesson to learn is this is
happening all across the government, efforts of published data. It is just
publishing data on a website and saying okay, we are done. It is not the
answer. That is not a transformative act. It is actually really being
thoughtful about how you work as a member of the community to help catalyze an
ecosystem. It is not even driven by you. Like this whole thing isn’t driven or
choreographed by us. It is increasingly driven and choreographed in a very
self-propelled way by the community and we are just happy to be a data sugar
daddy and an enthusiastic cheerleader for innovating of the data, but it is the
ecosystem. It is all about ecosystem development. That is really the key.

DR. TANG: Let me talk about the last mile of the ecosystem. I totally
believe what you said, but now I want to find out either what is out there. You
think of the iPhone apps. I need to Google health for my — what is my —

MR. PARK: So if you wouldn’t mind actually — let me actually finish —
these are phenomenal questions, but we may have some answers for a lot that may
help spark more questions. Let’s just go over this quickly. This is another
example. One of Tim O’Reilly’s fundamental principles in how data change
people’s lives is don’t make people find the data. Make data find the people
where people are already asking questions that data could help inform.

This is an example of integrated health data in the search. What Bing did is
they basically took our hospital compare dataset and integrated it into search
and there are certain set of flies have to be hit for it to materialize. If you
type in New York Presbyterian Hospital actually pulls up the patient
satisfaction rating with New York Presbyterian as reported by Medicare’s
hospital compare study versus state average. This is something again sort of
illustrates the principle bringing the data to where people are. There was
something like over 94 percent of Americans don’t even know that Medicare has
hospital compared data. The way we make it accessible is you have to basically
go find a website which nobody knows about to use. It is a great website, but
it is not necessarily the only way to look at the data. And so actually this is
an example of how the data can actually reach out and touch many more people,
help many more people who could benefit from it by bringing the data where
people are.

Another example of that. Google built a hospital finder which actually —
their presentation was titled best places to have chest pain in America. They
had Ronnie Zieger, a very gifted physician, to put this together just as a very
quick prototype to match up Google maps with certain hospital compare metrics
in terms of heart friendly and people friendly. It enabled to be much easier
for people to interact with and understand.

iTriage is this really neat start up that helps patients with a variety of
things that they need help with respect to making health care decisions and
they took HRSA’s newly available community health center, provider directory
and uploaded into iTriage so you can actually find a local community health
center using iTriage. It has been used according to them tens of thousands of
times since they actually launched this on June 2 to help people find by care.

Here is an example of interest built by a start up in Boston. It is a game
called Community Clash. And basically if you go to communityclash.com you can
play it. It is kind of like community health black jack. What happens is you
pick a city like Boston. You pick an opposing city like New York and you are
dealt five cards face down. Each of them corresponds to an indicator like
smoking, diabetes, et cetera. You are allowed to substitute two of the cards
out for other indicators that you think Boston beats New York on and then you
show your cards. It sounds silly, but I will tell you what. Of the 20 plus apps
that were actually browseable by people on a floor show after the plenary
session, the longest line by far was for this. I played it for 3 hours that
night with my wife. It is strangely addictive. I have been in health care for
probably the better part of 20 years. I learned things about community health I
didn’t know. For example, rates of mental illness in America are a lot higher
than I thought they were. I kept trying to find a city where they weren’t what
I considered to be shockingly high and I couldn’t. And that has actually
suddenly but importantly adjusted my mind frame and will influence what I do in
the future.

I submit to me — have you all heard of Farmville? Farmville for those of
you who don’t know is a silly social networking game. It is not silly. It is
fantastic. It is a social networking game on Facebook where you basically take
care of a farm and you trade sheep and bales of hay and everything. It was
started like less than 2 years ago. Do you know how many active monthly users
Farmville has? 73 million. It went from 0 to 73 million active monthly users in
basically 18 months.

I would submit to you that actually probably that Americans will become
aware of and take action on community health issues is far more likely to be
driven by a Farmville of health than by every American suddenly saying I have
to go find my local public health website or public health community college
lecture and get smart. This is just an incredibly interesting way to make
community health information actionable entertaining and have people have fun
but learn about community health at the same time.

PARTICIPANT: What is this one called?

MR. PARK: Community Clash. If you go to communityclash.com.

And then another one. Just one final example is Asthmapolis. This is
actually an entrepreneur, one person in Madison, Wisconsin who attached a GPS
device to an asthma inhaler and integrated with a web app. And what it
basically does is that whenever you use the asthma inhaler it enables you to
record the time and place of the attack which leads to some very interesting
things. There is a study that is going to be coming out soon on Asthmapolis
that show that in the target population increased asthma quality control levels
significantly because you suddenly you realize that all your attacks are
happening at work or they are happening every Tuesday when you walk past a
cement plant in the morning.

There are also actually options to contribute your data to an anonymized
crowd source map of asthma attacks that public health officials can use to
actually pinpoint where stuff might be happening. It is — example of crowd
sourcing of data to help individuals and to potentially help public health
officials as well.

DR. FRANCIS: Can I interrupt you just here for a second because this was the
one and you used the word anonymized. This was the one that raised the most
significant privacy question for me in particular because when I watched the
actual video there were grafts of particular patients and a comment about one
of them — that is the patient that we really need to get on because that is
the poorly controlled patient. And of course if it is fully anonymized you
don’t have any idea who that patient —

PARTICIPANT: Or voluntary.

DR. FRANCIS: It might have been somebody who you knew who the person was.
But I also went on the website and I couldn’t find a privacy policy for
Asthmapolis and I did that in June or July. It may have been too early. I am
just curious about just to put on the table because this is amazing stuff. This
is not by means of a criticism, but a misstep could be really serious for
trust. The question that I just want to ask you to reflect on at some point is
who you are talking to about privacy, how you are thinking about privacy. Are
there novel kinds of privacy questions that you see as emerging from this that
we could help you with?

MR. PARK: Yes. The answer is absolutely yes. I don’t need to reflect for
even more than a second. We would love all the help we can get. In fact
actually as I will talk about in a second as one of our next steps we are
actually — we in the IOM are making the June 2 meeting an annual affair of a
health data meeting where we bring together people who can supply data, people
who are turning data into apps and stakeholders who want to use the apps. And
we are trying to actually figure out what the agenda should be for the next one
other than that obviously perpetuating those conversations between those
groups, but I think having a track on privacy considerations would be
fantastic. And any recommendations that you might have on who might help us put
that together that would be really terrific. That would be really wonderful.

Speaking of which. I know Joy is like one or two other things she is doing
right now, but it would be fantastic if Joy could get involved and maybe
mobilize community folks to come in and speak with folks. I think that would be
wonderful.

DR. GREEN: Just let me chase that just for a second. Why don’t you formulate
particular questions that are timely and useful to you right now that in your
imagination to say if NCVHS would explore that or get answers to those
questions that would help us. Go for the specific questions that you think are
pertinent. Could you do that?

MR. PARK: Yes. Absolutely. Here is one for sure. Where we actually have a
relatively well-established framework is if we have HHS data and we are
publishing it. There is a whole set of screens we go through to make sure that
that doesn’t violate privacy confidentiality — stuff. The part which is a
brand new frontier is this crowd sourcing of data. How should one think about a
set of guidelines and practices to govern the development and use of
applications the crowd source data from patients, data which could be
incredibly valuable to those patients and incredibly valuable to other patients
and to other stakeholders like public health officials, but do so in a way that
doesn’t inadvertently hit a land mine of some kind.

That is a specific question right now that I think I am mostly interested in
precisely because it is the most unexplored and also precisely because this
kind of application is really interesting and really powerful and there is more
of these on the way. I can’t speak for David Van Sickle, the entrepreneur, but
I would think that he would be intensely interested in paying attention.

Here is actually another interesting data point. I think that there were
actually folks in HHS that I think quite understandably had a bunch of
questions about what liberating this data would actually do. It would actually
there would be a bunch of uses of it that would actually proliferate that were
grossly irresponsible.

One of the things that actually we have been discovering is that human self
interest is a powerful force and that people like David Van Sickle or people
like these innovators don’t want to look like an idiot anymore than anybody
else. They are actually really focused on, for example, getting smart about the
data and what it means. They are really focused and will be focused on how to
do this without tripping over something like privacy because they don’t want to
— Asthmapolis doesn’t want to get into a cross fire on privacy anymore than
anybody does. I think they have a big appetite to learn.

I think the part of what we can do as a community is really meet them where
they want to learn, convene these meetings like this next meeting and have the
kind of opportunity for people who want to be helpful and help them to get help
and get smart about privacy, get smart about — and in develop essentially a
whole new generation of health meteorologists of people who are more and more
versed in health meteorology. That is a fantastic question and a fantastic
outcome.

DR. FRANCIS: If you have other questions that you think would be burning
like — the crowd sourcing one is fantastic.

MR. PARK: It is a really good topic to dig into.

MS. PRITTS: Another one that I have had on my agenda to look at is the
proliferation of public use — and everybody does their own examination when
they — but to my knowledge but maybe you know differently who is doing the
cross check as you are posting numerous —

MR. PARK: There is actually a group that White House has convened that is
privacy, security something work group that specifically focused only on
publication of data and their specific focused on the mosaic problem of sort of
one plus one plus one equals. You should get involved in that actually and a
bunch of your friends that you know already. That is another next step that we
can —

DR. FRANCIS: That is a question I know state health departments are asking.

MR. PARK: Also on June 2 we launched something called the Health 2.0
Developer Challenge, more precisely an organization called Health 2.0 launched
it and we are very supportive and they announced it at this meeting. If you go
to health2challenge.org, it is basically a new website where any organization,
government agency foundation, company, individual actually can issue a public
challenge to build the best application that does X. And 12 challenges that
have been issued to date by different organizations, two by HHS, private
companies, foundations like Robert Wood Johnson, Markle Foundation, California
HealthCare Foundation, West Wireless Health Institute, et cetera. And actually
also on this site you can register to be a competitor. Over 400 developers have
registered to be at least ongoing competitors, 95 teams from across the country
competing. Actually and from places as far as India and Germany competing.

On October 7 at the Health 2.0 conference in San Francisco the first six
challenge winners were announced by the sponsors of their respective
challengers which were very exciting. And in addition Health 2.0 and others
actually held a series of code-a-thons across Silicon Valley also called
hack-a-thons to stimulate developer interest work in health data.

Have any of you actually been to a code-a-thon? The way that this works is
essentially what you do is you say okay. We are going to actually convene a
gathering of developers over a course of 24 to 72 hours to work on some
problem. In this case the first hack-a-thon was held by a little outfit called
the HealthTap in Silicon Valley and they said here is a whole bunch of health
data from the government and from other people and you develop interest in
learning more about this data and scrubbing in and working with it and building
stuff with it, show up at our offices. They were expecting about 30 people and
200 people showed up.

What is actually happening — Google actually held another code-a-thon the
following weekend and another 200 people actually showed up. There is a growing
buzz in the valley about health data and about how it is an incredibly exciting
frontier of which to work and to build things that can help people. And
code-a-thons and hack-a-thons help to do that.

Also October 7 — have you all heard of Blue Button? Blue Button was
actually also formerly launched by the Veterans Administration and HHS and
really VA is the senior partner in that and we are the happy junior partner.
But the whole gist of this is the following. I think as everybody knows the VA
has the My HealtheVet portal and Medicare has them on medicare.gov portal where
you can actually get an account, authenticate yourself and look at your own
data.

All the Blue Button is it is kind of almost embarrassingly simple thing
which is you have a button that is blue which you can save and you download a
copy of your own data. Now you already have your own data. It was already there
on your computer. All we are doing is actually bringing it to your form that is
human readable and transportable electronically. But it actually turns out to
be a big deal because for whatever reason this isn’t necessarily common across
the health care system for a variety of reasons and we are hopeful that our
example can help through lead the way to encourage other people to do the same.

We have actually done basically zero marketing of this in any real sense. We
announced it at the conference, et cetera, but to date over 120,000, actually
now over 130,000 people have downloaded their own data which is amazing. There
is still a long way to go because we enable Blue Button for a million vets who
have accounts on My HealtheVet and for all 47 million Medicare beneficiaries.
There is still a ways to go. But that being said it is actually interestingly
— an interesting step at MyMedicare.gov is that while 47 million Medicare
beneficiaries actually have accounts that two orders of magnitude lower than
that beneficiaries actually use MyMedicare.gov. We are hopeful that things like
Blue Button may over time make MyMedicare.gov more useful so people can use it.
It is a virtual cycle. It is another step toward liberating data in this case
to individual people for their own individual use. That can be helpful.

DR. OVERHAGE: Before you leave that one, do you have any members yet on how
many people have done it twice?

MR. PARK: No, but that is a fantastic question. I will get that number.

DR. OVERHAGE: It is just interesting.

MR. PARK: And of course there is a bunch of activity happening in the
ecosystem. People actually building the ability to help people take — it is a
human — file but it is a pretty ugly one of people building meters that make
it into a much easier thing to understand. Also PHR folks actually building to
upload the data, upload to other applications as well. It is actually really
simple step that is kind of —

DR. FRANCIS: Is it actual health information or is it claims information?

MR. PARK: In the case of the VA it is actual health information. In the case
of Medicare it is just your claims data.

DR. FRANCIS: It is just claims.

MR. PARK: Claims and demographic data — yourself enter demographic data and
your claims data. Medicare doesn’t have your health data.

DR. TANG: That might be another area where privacy should look into because
all of a sudden you have all this health data and you are exploring various
apps which means — companies — now have access to — those privacy —
probably more important.

MR. PARK: I agree absolutely. Markle Foundation has done a fantastic job
with a working group promulgating a set of privacy policies and practices that
they have actually got published. It would be great to actually I think key
that up for the discussion as well.

DR. FRANCIS: Just to give you one illustration of that there is at least one
state that requires computer professionals who have access to information about
abuse to report that abuse. That statute I am sure was drafted with the thought
of child porn and digitized porn, but there is nothing in it that says it
doesn’t apply to health information.

MR. PARK: Could you repeat that just one more time?

DR. FRANCIS: There is a state that requires computer professionals who have
access to information about abuse to report that abuse, technology
professionals in South Carolina. I don’t think anybody ever thought of it, but
I am sure it was aimed at the kiddy porn market. But it gives a list of
professionals in the statute who in their professional capacity acquire
information or require reporting abuse. And when I came across that one, I
thought whoa.

MR. PARK: It would be wonderful if we do this globally is another question
beyond the crowd sourcing question is that NCVHS could focus on Blue Button and
maybe draft off of Markle work as a starting point to say does that set of
guidelines practice make sense.

One of the things that is also beginning to happen is that private tech
organizations are actually working on deploying Blue Buttons of their own on
their own patient — it would be a really good time to give all the different
actors in a sense of what the best way to proceed is on this —

DR. FRANCIS: To give you another little privacy interface question, it is my
understanding that — there are a number of states now that have what are
called all payer databases which are being used to generate episode of care,
cost, data. I know my own State of Utah has one of those. And to date Medicare
has not been willing to share their data citing privacy concerns. And I don’t
know what the base of that is. I just am a member of our health data committee
and I know that they are continuing to try to get Medicare data. They have all
the other payers in the state, but Medicare.

PARTICIPANT: I also know that it is for Colorado.

MR. PARK: We are very excited about what is going on and we just want to
keep helping it proceed and part of that is actually filling it with evermore
data that is made ever more accessible. Launching actually January 2011 is
going to a new HHS Health Indicators Warehouse. This is being led by Linda
Bilheimer at NCHS, but is being operated on behalf of all of HHS. It is going
to be a single warehouse/website which contains over 2000 indicators of public
health performance, health care utilization, quality, prevention, prevalence of
disease in the American population, determinants of health, evidence-based
interventions that can positively impact indicators all made available in a
single warehouse at the aggregate data of national, state, healthcare market
like HRR and county wherever that data is actually available. No microdata. No
individual provider or patient level data. Just rates, metrics, geographic unit
level.

All made available in a single warehouse with well-documented metadata, the
ability to actually download the data in a structure form to use and also data
made available via an API, an application program interface which is just a
fancy word for a way for developers to basically plug into the data and be able
to retrieve it in a really easy way to power other applications and websites.
That will be launching January 2011.

We also actually of course have already had the compare data out for some
time, but in September put APIs on it which makes it a lot easier to work with.
The National Library of Medicine as you may know has also launched an API
portal as of September 2010 that has a whole inventory of super awesome APIs to
their data like clinicaltrials.gov and PubChem and RxNorm and MedlinePlus and
all kinds of amazingly awesome datasets that are now much easier to work with
thanks to these APIs and you can — find them.

Healthcare.gov have you all heard about? It is a website that we have
deployed that has an inventory of public and private health coverage programs.
We are very proud about the website. It is a great public service, but I
actually think that the data itself should not be found only on a government
website. We are actually going to be making that data available as well to
proliferate across the web.

And we also — and this is going to sound like an incredibly geeky detail
and a detail that is maybe even more profound than any of those. We are
rewiring the processes within HHS to encourage the publication of data. This is
actually all detailed in open government plan which has other datasets actually
that we are also planning to publish or have already published.

But the idea — it is going to be actually led by our HHS data council — is
for agencies to undergo a regular process where they survey their inventory of
data based on their priorities and the secretary’s priorities targeted
additional datasets to actually make public. Also actually whenever there is
new data investments being made to basically have as part of the evaluation
criteria for the investment for making the data public unless there is good
reason not to in which case that is of course okay, but to make it kind of a
fundamental reflex and ongoing process to basically make data available in a
machine readable public forum as opposed to having just be periodic bulging
exercise that happens once in a blue moon.

And then finally to one of your points there is so much of this happening.
It is really kind of hard to keep track. It requires like a PowerPoint
presentation. We want to try to make it more institutionally viral and one way
to do that is we are actually deploying a super site called healthdata.gov in
January 2011. It is actually a community on the existing data.gov site that
will be dedicated to health data. There will be a one-stop resource where you
can actually find every federal datasets, not just from HHS, but also from
USDA, EPA, Housing and Urban Development, et cetera, all downloadable of
federal data and metadata about what that data actually is. Also a link to an
apps expo that will be hosted actually by another organization because we can’t
host it, but that we want to actually have people be able to find which will
have a cross section of super cool uses and applications have been built using
the data.

An online community, a forum where people can actually talk about the data,
ask questions about the data, raise issues with the data, request new data,
talk about how they are using the data, which is totally not controlled by us.
It is just going to be whatever the community actually decides to talk about.

And then in another section we are going to list additional data sites that
we are not endorsing because we can’t endorse them, but that are other sites.
They are run by states or localities or KidsHealth.org which — are just
fantastic. Other data sites that provide data on the same basis we do. Free,
without — constraint, downloadable that we think that the ecosystem might find
interesting.

DR. CARR: Larry, Walter, Mark, Garland, Paul.

DR. GREEN: Can you say more now about the federal agencies whose data will
go to number five there, healthdata.gov specifically. Does it include the
Department of Education, does it include the Department of Labor, and does it
include the Department of Energy?

MR. PARK: Yes. Those specific departments I think aren’t going to be as
heavily represented initially and the datasets are put out there, but
absolutely it will.

DR. GREEN: It will or it does.

MR. PARK: Healthdata.gov doesn’t exist yet. Even when it does exist — if
you go to data.gov today, there are actually a ton of datasets from education,
energy and labor. Healthdata.gov I think will have less representation because
I think that there are additional datasets that they could make available that
are more closely correlated with health that we would like to actually have
them put out. The existing datasets they actually have available data.gov will
be in healthdata.gov as well.

DR. GREEN: This is a good example conceptually though of something that
seems to me needs attention. It is hard to name things that are more closely
associated with health and education.

MR. PARK: That is absolutely 100 percent right. Agreed. Maybe the problem is
that we are not just thinking extensively enough about drivers of health. Maybe
there is actually a bunch of data that education already makes available that
we should actually just include.

DR. CARR: We are going to — did you want to say anything, Walter?

DR. SUAREZ: Great topic and we appreciate very much you coming. I have one
comment and one question. The comment is there is federal data and
healthdata.gov looks like it is going to focus on federal data for the most
part.

MR. PARK: There will be another section that actually has links to other
data sites.

DR. SUAREZ: Because there is an organization called the National Association
of Health Data Organizations. I don’t know if you are aware of it.

MR. PARK: The National Association of Health Data Organizations?

DR. SUAREZ: Yes, the National Association of Health Data Organizations — 25
years in existence. We just celebrated —

MR. PARK: Are you part of it?

DR. SUAREZ: It is a national association so there are a number of
organizations involved in it. It is called NAHDO.org. It has worked exactly on
this precise topic which on most part on the local level or state level to
bring in state data resources. In fact, it is interesting that, Leslie, you
mentioned that All-Payer Claims Database because I was on a conference call
that is why they had to come out with the All-Payer Claims Database effort.
There is a whole host of resources and data that is also available.

But then the second question I have — more than a comment is —

MR. PARK: What is the best way to reach out to them?

DR. SUAREZ: Denise Love is the executive director.

MR. PARK: Does anyone have contact info for her? And you are —

DR. SUAREZ: Walter Suarez.

MR. PARK: Thank you, Walter. That is wonderful.

DR. SUAREZ: It is actually on the website too. The other comment is — with
all this data marked and the super system of availability of data, is there any
warning label that is on the dataset or would there be any disclaimer or some
sort of a warning disclaimer on the healthdata.gov or any other places that
advise people that are attempting to link this data for purpose of
re-identifying individuals or others for that matter would be legal?

MR. PARK: Kind of long story short, we actually think that the disclaimer is
actually too late. The data that we put on healthdata.gov which is going to be
by definition without legal agreement is basically being available,
downloadable on the public domain. It is on us to make sure that they would put
on healthdata.gov doesn’t actually get to the point where someone could use it
to be there for anybody. For example, the Blue Button data is not being made
available on healthdata.gov. The Blue Button data is made available only within
your personal health record account. The health indicator warehouse data, for
example, there are certain metrics of community health that you could not put
in that warehouse because they could potentially be used to triangulate
someone’s identity and so forth. That is kind of the approach that we are
taking is to make sure that the data we put on healthdata.gov is felt that —
can’t be used to re-identify me.

DR. SUAREZ: The only concern of course is that data that is at some level of
granularity available from healthdata.gov starting in January will pose a risk
at some level of potentially allowing people to link that data with some other
data from other place in some location or locality and re-identify individuals.

DR. CARR: Let me just interrupt. I think we have our timing off, Chuck. You
needed to speak at 10 to be out of here at 10:15. Is that right? I think we are
going to go until 10:15. I want to just jump in here for a second because
yesterday executive subcommittee spent the day talking about emerging data
sources. NCVHS is charged with advising the secretary on data, data uses,
emerging data sources. Our homework was to review the June presentations. And
actually we also heard from the IOM learning health systems who will be working
with Chuck on thinking about when all this electronic data becomes available.
What we will be talking about today is the convergence of things and I want to
just give you a little headline so that this can be the beginning of a close
relationship together because we are very much aligned.

The themes that came out of yesterday Jim Scanlon talked about the need for
a dashboard on measures of how we are doing on health and health reform. And
the discussion went then to communities. You could have it federally, but
really what is happening in the community, what are people using, and how are
they using it. In parallel with that we were hearing about the themes coming
out of the learning health systems and the need for governance and oversight.

What we will be talking about today is just how we organize ourselves to now
look forward to this new world, new epidemiology and how can we help in terms
of holding hearings and pulling together experts on privacy, on data integrity,
on uses of data. That is the direction that we are heading into. We are very
excited about this and having you come here today and really bring it alive
even more and point us to some of the other areas is very much — excites us
even more about this.

We have time probably for Garland. You have been waiting. Maybe we will let
you conclude and I think we are going to maybe have to hold the questions.

MR. PARK: I will take like 30 seconds. I just wanted again to reiterate that
we have this annual open health data meeting, the June meeting apprised with
IOM next June would love to actually work with NCVHS.

DR. CARR: We would love to partner with you on that.

MR. PARK: — topics. That would be wonderful.

PARTICIPANT: Do you have a date picked?

MR. PARK: June 9. We haven’t publicly announced it yet, but that is kind of
the tentative date. It is more than tentative. It is going to be the date. But
there is actually going to be a whole bunch of work before that obviously. They
will think about the agenda, think about who should be there and we would love
to work with NCVHS. I am on that. What is the best way to do that?

DR. CARR: Why don’t you contact me? Start with me. Justine Carr.

MR. PARK: Fantastic. Okay.

And then the second thing is actually — there is also something else that
we are doing as well. I just wanted — heads up which is we are doing a beta of
a health data journalism workshop. The University of Missouri has a center for
computer-rated journalism and there is also a National Association of
Investigative Reporters and Editors. And they are extremely interested in
working with us on a workshop which will initially have about 30 or 40
journalists where they want to come in. We will learn about the health data,
learn about the tools to use in data to develop their own tools, to generate
stories, to generate officially their own kind of interactive utilities, to
help get an edge to an increasingly tumultuous media environment. But there I
think an important part of the ecosystem as well in terms of raising awareness,
in terms of making stuff understandable, in terms of sparking action. That is
actually very exciting to see that level of interest and for that community
too.

DR. CARR: Excellent. I think we will conclude now. This has just been
incredibly exciting to hear about, but just remarkable what you have
accomplished in a short amount of time and transformative. And we will look
forward to partnering with you in whatever ways that we can drawing upon our
long experience in many of these areas of population health as well as privacy.

MR. PARK: Wonderful. Well, let me just say as well that this last — what is
it? It has only been about 45 minutes has been unbelievably productive. I have
a full list of actually actionable concrete things to go do based on what you
said, but I think speak to the fact that there is just an incredible amount of
collective experience in this room that we should leverage for this.

I will not only take up the — I will embrace it in a bear hug. I would love
to work very closely with NCVHS on this. I will follow up with you — that is
fantastic. Thank you so much.

DR. CARR: Chuck, can you top this?

Agenda Item: IOM Preliminary Report – Dr. Charles Friedman,
ONC

DR. FRIEDMAN: What I certainly can’t do is a better job than Todd
negotiating Windows 7. We are all XP users. This is a Minnesota Public Health
Department thumb drive. This has contaminated the whole State of Minnesota —

Good morning everyone. This is my fourth or fifth update and each time I try
to do something a little bit different, but this time I think to set up some of
the discussion we are going to have later today. I am going to predominantly
talk about the learning health system work and I apologize to those of you who
were here yesterday. You are going to see some of the same slides that Claudia
Grossman from the IOM showed, but you are going to get my narration which maybe
a little bit different.

But before that let me just give you a few ONC highlights since this is the
ONC update. I was trying to factor out of everything that is going on a few
things that might be helpful for you to know and that there is a certain
likelihood except for Paul Tang who runs all this stuff you would probably find
useful to know.

First and foremost on this list is that even though 2013 seems like a long
way away and 2015 seems even longer away for many of us, the advisory committee
structure and predominantly the health IT policy committee has begun work
refining its previous conceptualizations on meaningful use stages 2 and 3.
There is a meaningful use workgroup under the health IT policy committee that
has been created and it is having a series of public meetings and the next one
of these in case you are interested is this Friday in Washington at the
Humphrey building. These discussions are ongoing. They are preceding a pace.

The intent here is to formulate early enough a conception of what meaningful
use stage 2 is going to be to give strong signals to the industry as to what it
is they are going to have to be prepared to do more than they would get if they
had to wait for the notice of proposed rulemaking to be their first queue to
what the next stage of meaningful use is going to be.

The second highlight I wanted to share with you relates to the certification
program. You may recall that certification is key to the whole high tech
program. Meaningful use requires the use of a certified product and ONC has put
in place a certification program which is open with regard to the number of
certifying bodies that can participate in this process.

There are currently three so-called authorized testing and certification
bodies or ATCBs in the local argot. I knew that, but it wasn’t until I went to
the website and I will give you the home page for all of our health IT
information at the end of the talk how many actual certified products there
were. There are approximately now 120 certified products that have been
certified by one of the three of the ATCBs. And I leave you here the URL which
will take you directly to the listing of the certified products. I don’t know
if this number was surprising to you, but I work at ONC and it was surprising
to me because I had not been tracking this.

I am not going to go one by one and give you a specific highlight on the ONC
grant programs, but I think it is safe to characterize and this is the language
we use to characterize it that all of these grant programs are now in what
might be called an early implementation phase. All of these programs now are up
and running. These include of course the regional extension centers, programs,
the workforce programs, the state grants for health information exchange which
were referred to in an earlier conversation, the development of standards and
interoperability framework and a certification program, and Joy’s efforts that
you heard about earlier, the development of a privacy and security framework.

We also have a set of transcendent programs in place because they address
both the adoption of EHRs and the exchange of health information as pathways to
meaningful use. This is the SHARP program for research centers on key research
areas. The program of the 17 beacon communities to be demonstrations of what is
possible through increased meaningful use in a community to address specific
health care goals.

And then I added to this slide something that I really haven’t put on it
before and that is we are evolving a set of what we are calling key theme
initiatives that are not reflected so much in major grant programs, but are
reflected in increasingly organized efforts that we are pursuing around areas
in need of pursuit. One example of this is clinical decision support which
actually has been — it is the first theme initiative that has been ongoing for
some time.

Another example is usability. Another example is safety which is closely
tied to usability and there was an announcement a few weeks ago about an IOM
study that is going to be done for us specifically relating to usability. Rural
health, disparities are other examples of these theme initiatives which are
taking shape in different ways, but I think are very important complements to
the other program activities you see on this slide.

Before I get into the warning health system aspect of this, let me just ask
if you have any questions on this quick highlight film like the NFL’s games in
3 minutes.

DR. FERRER: The IOM’s study on usability. Can you elaborate a little bit on
that?

DR. FRIEDMAN: It is going to be focused on actually what the government’s
role should be in providing safety oversight in relation to health information
technology. It is really a policy exploration study, how best to do this. It is
not a methodological, technical work about how to make EHRs safer. It is really
more about how to put in place a structure that will enable EHRs to become
safer.

DR. FERRER: And what timeframe?

DR. FRIEDMAN: I don’t know. I don’t know off hand. I don’t want to give you
a figure that is incorrect, but this is a formal IOM recommendation generated
study and rarely are those completed in less than 14 to 18 months. But of
course everything we do is done on the double quick. I would guess 12 to 18
months.

DR. FERRER: Of the 120 certifiable products, how many meaningful use
criteria stage 2?

DR. FRIEDMAN: None of them would meet stage 2. These are certified products
meaning that they have the functionality when put to appropriate use within a
professional practice or hospital setting to support meaningful use. But
meaningful use is not just about the technology. It is about what people do
with it. These certified products are certified with reference to the
meaningful use stage 1 criterion.

DR. GREEN: Chuck, as you know, we are very interested in the community’s
perspective about how all of this work benefits communities, local locations.
Your Beacon Community Program — that is what my question is about is what is
your opinion about the appropriateness and the functional availability of the
Beacon Community Programs to help us learn and understand what it is
communities want from this.

DR. FRIEDMAN: I think the theory is perfect. We can’t of course see into the
murky future and guarantee perfect execution of the plan based on the theory,
but the idea here is that a set of communities that was selected in part
because they are more advanced toward meaningful use than others and is likely
to get their first. Should those communities be able to demonstrate empirically
supported improvements in health and health care quality as a result of their
advanced state of meaningful use that will be an enormously valuable
demonstration to the rest of the country of the value of health IT as a
catalyst for better health care. The theory is good. Will these communities all
meet their goals? That depends on a number of improbables in the murky future,
but I am — you asked for my opinion. My opinion is that this is an
extraordinarily valuable program because there is nothing in IT having been in
this business for 35 years that is more convincing than a demonstration of what
is possible.

DR. TANG: A clarifying question of Jorge’s. I think he asked about usability
and you talked about the care of safety. There is not a separate IOM activity
on it, right?

DR. FRIEDMAN: No. There is not an IOM activity on safety. Did you ask about
usability or safety, Jorge?

DR. FERRER: Usability.

DR. FRIEDMAN: Okay. I am sorry. Thank you, Paul. I responded with regard to
safety. Usability is a less formal program in the sense that we don’t have an
IOM study, but NIST is centrally involved in this activity and in fact last
July on the same day that the meaningful use stage 1 final regulation was
announced NIST held a very well attended except for all the ONC people who
couldn’t go because of the announcement workshop. It was attended by about 200
people on usability. I am quite sure there is a report out. In fact, I know as
a fact you can find on the NIST website a report out on that. We are working
very closely with NIST and with AHRQ and entities outside the government on
this usability activity.

DR. FERRER: Chuck, will usability be a sort of issue criteria thing?

DR. FRIEDMAN: I can’t predict what is going to happen. I am trying to think
if there is anything specifically about — that specifically targets usability
there now. I don’t recall. Does anybody know?

PARTICIPANT: Meaningful use?

DR. FRIEDMAN: No, in certification. To your point usability testing is
something that is being investigated as part of this usability initiative and I
will tell you that one of our SHARP sites, the site at the University of Texas,
actually has set up a voluntary usability testing program as part of its
activity. Building had been underway long before they were funded and 18
vendors have already signed up for voluntary testing in the UT usability lab.
Whether it is required or not I think there is interest in more of a bottom up
approach to usability where vendors might see it to their advantage to have
their systems tested both as feedback to them, but also as a statement to the
public that their system was tested and this is how it came out.

DR. FERRER: That is an artificial environment, right? You wouldn’t be able
to replicate true clinical processes there, right?

DR. CARR: Jorge, I am going to ask maybe that we take that off line so Chuck
can get to the other part of his presentation.

DR. FRIEDMAN: But a quick answer. It is a laboratory environment. You always
have this tradeoff between laboratory environments which give you kind of a
precision and control and clinical environments in which this kind of work is
hard to do in a way that enables exact comparisons between products.

Just very quickly turning to the Rapid Learning Health System. I think you
all have seen a variant of this slide before which basically illustrates our
vision of the ability in the future to interconnect data possessing entities of
various ways, shapes and form for the purpose of quality study, public health
activity, and research of various kinds which will require the activities of
aggregation, analysis, and sharing all under an appropriate mechanism and
governance that ensures confidentiality, privacy and security and enables this
to function in a trusted way because talking about it is one thing and making
it happen is quite another.

ONC turned to the Institute of Medicine to convene a series of workshops
involving a lot of smart and savvy people to pursue this notion more deeply of
a learning system. And this is how IOM defined it in words as they began to
formulate the plans for the workshop, a system where science informatics and
cultural line can generate new knowledge as an ongoing natural byproduct of the
care experience and thus seamlessly refine it for whatever best practices for
continuous improvement.

The workshop series as it unfolded over these three events that took place
in July. I don’t have the dates actually in mind. I know the first one was in
July.

DR. CARR: I think July, September and October.

DR. FRIEDMAN: Thank you. It is going to result in a report, a short version
of the report that will be released before the end of this year and the fact
that IOM is able to turn it around this quickly reflects in part that this is
not a formal recommendation generating report signed off by the National
Academy of Sciences. It won’t be specific and informative in various ways, but
the findings will not take the form of formal NAS recommendations and the goals
of the activity are seen on this slide.

The three workshops as they were conceptualized in a sequence the first one
looked at opportunities, challenges, and the general vision and began to
surface the issues that would arise in creating such a system.

The second rather ambitious we called the System After Next using the term
coined several years ago by Tony Gorry really was future oriented and took a
deeper dive into how we might actually build a system to do this. And then the
third workshop really focused on strategies that will be necessary to get where
we want to go.

And as the work unfolded, four themes that are probably not surprising to
anyone who has thought about this naturally evolved: a technical aspect to
this, an aspect of how you actually go from information to knowledge and put
the knowledge to use to actually improve health and health care, how you engage
patients and populations, and how you put a governance over this. It actually
functions as a system.

One result of these deliberations I would really like to call out and from
those of you who were here yesterday it was mentioned yesterday. We really were
informed by a group of computer scientists who had really not engaged around
these health issues, but were invited to this workshop. And they brought with
them to the workshop this perspective of this learning health system as
something that if it was going to be successful would have the attributes of an
ultra-large system. This concept of an ultra-large system was formulated at a
meeting in 2006 called by the Defense Department to really think about what are
the challenges of maintaining systems of the magnitude of the ones the Defense
Department is now maintaining.

There was at one point in the meeting and this was at the second meeting as
the folks who were propounding this perspective were talking. There was like a
moment of group epiphany. It is the only way I can describe it. As people
realized that this framework was really something we really did have to pay
attention to. It really captured a number of key features and key challenges of
what we were facing going forward that had not really been articulated quite
this way before, for example, that you have to get the standardization of a
system like this just right. If you specify at the beginning too few standards,
it doesn’t cohere into a functioning system that will work in the manner that
my first diagram suggested.

On the other hand, if you over standardize, you create a brittle structure
that will crumble under the weight of its own complexity and that cannot easily
change. It also was the system that dissuades instead of promotes innovation.

And I think the third revelation that really struck me as they were
describing it is that a system as complex as this is going to fail in specific
ways and you will have to design a system that can recover and learn from
failure rather than a system that you expect to work perfectly all the time. It
is a design for problems approach, but to be able to recover from them. Those
are just some examples of the novel thinking that came out of this perspective
and I think that will be very valuable going forward.

I and my colleague Adam Wong and David recently published our views on
achieving a nationwide learning health system in Science Translational
Medicine. Justine, if you would like, I could get a copy of this article to
everyone because it is very highly correlated with what was discussed at the
IOM but puts a little more with an ONC slant on this.

That is my overview. Of course much more detail on all of our programs and
the matters I refer to as highlights can be found on healthit.hhs.gov. Any more
time for questions or —

DR. CARR: I think we are out of time, Chuck, but thanks for this and also
your input yesterday. Are you heading out now?

DR. FRIEDMAN: No.

DR. CARR: You are going to be here. Great. I think we will have a little bit
more development when we come back at 10:45 and we can talk about the themes
that emerged from yesterday. Take a break now for 10 minutes. Thank.

(Break)

Agenda Item: Report Out From Exc Subc “Retreat”
Committee Review/Decision-Information Flow – Dr. Justine Carr

DR. CARR: What I would like to do now is review what we talked about
yesterday. You have copies at your desk and I will just — is there a blue
button? I am going to take you through yesterday. We were here in this room.
Here are the folks who were in attendance outlined on your slide. We began —
well, we didn’t begin. We need to begin as we think about what do we do, where
do we go from here. We go back to what is our charter tell us as it says here:
the objective and scope of activities of the committee. The committee shall
assist and advise the secretary through the Department of Health and Human
Services, data council on help data, statistics, privacy, national health
policy, and strategy to best to address those issues. And I think Jim made the
point yesterday that we are not a policy-making policy. We are an advisory
group.

And secondly of course as we know we show a system advises in the department
and the implementation of HIPAA.

As we said our current state is we have our mandated standards, our HIPAA
work from Congress, and then we have an elective side. That is kind of how we
thought about it yesterday. What are we required to do and then what is
somewhat discretionary in area. And where we are today is that in our work in
privacy that history dating back to pre-HIPAA and more recently we have been
focusing on EHR and PHR. Population health. We have been talking about data
linkage and of course we will be hearing more about the recent proposal from
populations. And then quality we have been talking about meaningful
measurement.

Grounding us back to our basics and I think really aligning very much with
the conversations we have heard this morning remember that populations health
is not just about disease, functional status and well being, but it is also
affected by community attributes, context, place and time.

And similarly as we think about health and health care the health care
provider is one dimension, personal health and other dimension, and population
health, an important dimension.

Our goals then are to identify focus and themes for the next 18 to 24 months
that make it timely, meaningful contribution to where the puck will be is a
term we have used a lot over the years, but never more important today in this
fast-moving environment. But also to align with national priorities and
legislative mandates and to align with emerging issues in health and health
care and also align with the resources and time frames of the committee members
and meetings.

And so, our approach was to hear from JAMA about key priorities for HHS and
then to examine emerging data sources and then potential impact of this new
data.

Jim took us through the HHS strategic goals and objectives which included
health care, public health promotion and protection, disease prevention, and
emergency preparedness as well as human services and scientific research and
development and the details are outlined on your slide for you.

And then emerging data sources. Obviously we had a rich discussion this
morning. Digital health data and metadata generated from EHR adoption and
meaningful use is one major theme that we have been discussing and the focus of
the IOM meetings over the summer.

And the second as we have heard from Todd Park this morning, the liberation
of HHS data and I guess I have to add crowd coursing there as well.

And so when we think about what is the potential impact of this new data in
the rapid learning health system is one outcome and as Chuck read to us earlier
one in which progress in science informatics and care culture align to generate
new knowledge as an ongoing natural byproduct of the care experience and
seamlessly refine and delivery best practices for continuous improvement in
health and health care.

The IOM has been focused mostly on the emerging digital data out of
electronic health records, but as we have heard today with the community data
initiative is about novel juxtaposition of data elements from hhs.gov and other
sources so not only health, but community resources and environmental
influences. I put here one of the mash ups that they had correlating
information for community near San Antonio where there is high child poverty
rate. There is high teen birth rate. They looked at what are the available
services of boys’ and girls’ club, acute care facilities. What are the federal
assistant grants from HHS immunizations to state and local? And they did
documented abstraction from committee minutes to identify key players.

Taking all these pieces was a way of identifying the current state and then
opportunities for who to talk to and what to talk to them about, but obviously
what we just heard from Todd was very dynamic, very exciting.

DR. FRANCIS: Justine, could I ask you a question? If you just go back a
slide. This is really a question for Chuck because I missed a little bit of the
discussion. The quote about a rapid learning health system one of which
progress in science informatics and care culture align to generate new
knowledge as an ongoing natural byproduct of the care experience and seamlessly
refine and deliver best practices for continuous improvement in health and
health care. My underlining question to you actually yesterday and what I just
continue to have is to understand how much what the idea of a rapid learning
health system is focuses on the health care experience and how much it focuses
on overall improvements in health whether it is through bicycle paths in a
community or the location of grocery stores. This actually goes to the new
data.

DR. CARR: I think that if you go back one more slide what I was saying is
there is one piece that the IOM has been focusing on coming out of EHRs all
generated obviously by health care, but there is an emerging world coming out
of the community data initiative that takes education information and so on.

DR. FRANCIS: I guess my question about the rapid learning health system is
is it the narrower or is it everything.

DR. CARR: I think that is an excellent point. That is what we want to talk
about because we have these two seemingly maybe parallel, but not really
parallel emerging. Hold that thought and let me come back to it and let Chuck
comment.

DR. FRIEDMAN: Just very quickly, Leslie. There is nothing in the
infrastructure that we are contemplating that would automatically leave out any
particular kind of data. While Justine points out very accurately, there has
been a focus on taking advantage of this anticipated volume of information that
is suddenly going to be in computable form in EHRs. That doesn’t mean that it
is the exclusive source of data for the learning system.

DR. CARR: And I think that and I will get to it, but good to talk about it
here is that the meaningful use is just beginning. EHR uptake is in a very
early stage. What these data are and when they are available is still a little
bit down the road, but as we look at today, this morning, this minute we can
see all of this other stuff that raises exactly the same issue, the same
benefits by juxtaposing these data, integrating them and making them live. The
same learning can come about. And similarly the concerns about privacy, data
integrity, all of those kinds of stewardship or governance issues apply whether
we are talking about what Todd is doing today or whether we are talking about
what the EHR digital data health care data is.

I think we are on the same page. It is really a continuum and we don’t have
to wait for all that other data.

In the IOM report the priority action targets identified were making the
case, getting stakeholder involvement, embedded quality measures, distributed
clinical research, functionality standards, interoperability, identity
resolution, technical acceleration, ultra-large system approach, test bed, and
then governance and coordination and that is what we talked a lot about
yesterday. That aligns a lot with what we have done. Chuck thinks stewardship
seems like a holding back concept and I think we think of it more of an
enabling concept. As we use stewardship or as was used in the IOM, the
governance addresses all of these things of use of the data and proper use of
the data on all fronts.

We talked in different arenas yesterday sometimes about the data then
finally got our sequence right. It begins with data generating information, but
then creating knowledge. And then as Tom said today and as we have talked about
yesterday and Ed Sondik brought up, key thing is just because you have that
knowledge do you have the transformation and what does it take for that.

As we talked about the continuum of learning getting to data, there are very
real issues of standards and also metadata standards. On the information side
there are issues around what is a relevant query and doing sound aggregation
and intact datasets. On the knowledge side someone asked the question who
declares it knowledge, when does that happen, and then with that knowledge how
does education happen, communication and outreach themes that were reinforced
very much by the former chairs of the committee at the 60th
anniversary.

And then a term, I think — was it Don Steinwachs or who said, connect the
dots that we have all these pieces, but you connect the dots together of the
information on of what is out there.

And then ultimately transformation. And I think Jim has talked about the
fact that HHS is trying to build a dashboard to measure health care reform. Is
it happening? And then is it impacting? A lot like what we said about the
beacon communities. Are they doing things and is it making a difference?

Ed raised that question, Ed Sondik, of why — how does transformation take
place? What is the value proposition? What is the incentivization for change?
How do you measure the impact? And does change come about from a top-down
federal dashboard or does it really come about in the communities? Susan shared
a little bit about Mendocino County and how that data is being used and making
changes and Todd also shared in the Healthy People 2010.

Those are specific questions to those parts of the continuum, but then
underlying all of it is governance, stewardship, privacy, security, data
integrity, sound use of the data, and also a term I have later on of just the
trust equation.

IOM report and NCVHS. How do these stay together? Go together? ONC plans to
take a lead role in a coordinated effort to develop the infrastructure for a
rapid learning system to build and extend meaningful use. And that effort, as
Chuck pointed out, will need advice from many informed people, but a potential
role for NCVHS given its traditional focus and mission on population health
would be these themes of privacy and security, strong trust fabric, the
standards work related to population health, governance, stewardship and
education.

Then what are the emerging needs that NCVHS is looking at? Well, obviously
we have our continued HIPAA and Affordable Care Act work. Jim asked could we
contribute to the HHS dashboard development and the discussion that ensued was
could we use local communities as a laboratory for data that is needed, useful,
and available and learn how it can drive change.

Another area to contribute would be the governance aspect of the learning
health systems. Again, as we look at communities and see how information and
knowledge makes change at the same time we look at how they use that data and
how did it — what were the issues that came up with the data, lessons learned,
and sort of evolving these same themes that are part of the IOM rapid learning
health system.

Another thing that Jim actually mentioned was can NCVHS play a role in
contributing to the privacy model definition for accountable care organizations
that are pilots for which are due as early as January of 2012.

And then of course we have our assigned things. We have our elected things
and then we have to always keep flexibility for the unexpected things.

Putting some of these things together I think one of the models that we were
talking a lot about yesterday was the building on what populations has been
working on: communities at learning health systems and the new epidemiology. If
HHS wants to create the dashboard, can we look to the communities that have
used data in their dashboards and have achieved improvements in their health or
health care? What data did they use? How did they choose it? How was the
community motivated to change? What were the obstacles and lessons learned?
Again, getting that local knowledge and informing the national dashboard.

And then the second piece, can we drive governance and guiding principles in
observing what has gone in these communities? How was privacy protected, trust
established? How was data integrity established? What principles were applied
to ensure cause and effect with the data? And how was the community educated on
the findings?

DR. TANG: Paul Tang, Palo Alto Medical Foundation, member of the committee,
no conflicts. This slide and the next slide have great needs and are you
implying that these needs are addressable by NCVHS?

DR. CARR: Yes. We are trying to say these are things that align with the
work that we have done already in terms of governance and so on.

DR. TANG: Let me just ask questions. Some of these and particularly the next
slide have a lot to do with what I might call management versus health policy.
Is that correct or not? And I am looking at Chuck to say well and what of these
would be covered by the IOM study. I am trying to figure out what is already —
it seems like a lot of these things hopefully will be covered by the IOM study.

DR. FRIEDMAN: The IOM study is just getting the game started. The IOM study
will —

DR. TANG: No, I am talking about the new one. The learning health systems.

DR. FRIEDMAN: That is the one that is completed.

DR. TANG: Okay. There is a new one.

DR. FRIEDMAN: The new one is safety.

DR. CARR: There is an ongoing theme of learning health system which has many
subparts. The one that was related to the electronic health data held the
meetings in July, September, and October.

DR. TANG: I will take that part offline. But some of these seem like
something maybe an ONC would do, something maybe a private sector would. My
question is some of these are more operational versus policy. Anybody else feel
that is true?

DR. CARR: Just to be clear. We are not charged with policy, but building on
what Jim was asking for yesterday was sort of input on what the dashboards at
HHS is developing and from that initial conversation we had a lot of discussion
about how does a dashboard help you. What can you expect from a dashboard? How
do you know it is relevant when it shows improvement? How does that translate
into actual improvement in the communities?

DR. TANG: And you think that is the work of this committee?

DR. CARR: Walter.

DR. SUAREZ: I think the role of the committee has been to advise the
secretary on a number of issues, policy as well as operational. And one example
of that with respect to the dashboard is advising on the content and the use of
the dashboard itself and progressive addition of elements into the dashboard.
It is not that we are going to run a dashboard. It is that we would provide
advice on how to build or what to include in such a dashboard with respect to a
metrics that allow the measurement of achievement of goals related to health
reform, related to high tech, related to different things. That is how I see it
as our role.

MS. MILAM: I think the questions are great. They are questions that a lot of
us at the state level are grappling with today. They are essential questions
that some folks have figured out pretty well, but there is no common base of
best practice or recommendation to build from. And as we look at more data,
make more data available, these questions are essential that they be answered
and frameworks in place so that we do have trust. I think it is great.

DR. CARR: Either Don or Larry, do you want to speak to how this ties in with
the proposal that you were developing from the population subcommittee?

DR. STEINWACHS: Larry keeps deferring to me. I guess I must be older. Is
that the message I should take? That is it. This had all been initiated as you
know by thinking about where is the potential for expanding population health
information that people could use as you think about electronic health records,
the American Community Survey that is ongoing, other data sources, and the fact
that it is the community and there are a variety of definitions for communities
sometimes, but it is the community that really is the place where you can work
on eliminating disparities where you really understand the context in which
health care, health and the population well being is.

It was a thing in terms of an effort to try to understand just what Sallie
was talking about initially. There are communities around the country who are
getting more engaged in wanting to look at and understand their own health
data, why are they using that, how might health information exchanges and other
mechanisms that exist in communities and states help actually provide
information that is much more relevant to the community itself and that it
talks about its popular experience. How do you address the denominator issues
of some people have electronic health records, some don’t. That might be
matched through census data to try within a framework so you know what the
missing pieces were even though you still have to learn more about the biases.

I think Larry and I and the subcommittee saw this as a beginning of a
process to try to look at what is the potential when you look at where the puck
is going for communities to actually have health data that would help them
address issues that are important to them and would be the health data that
could be rolled up if we had agreement on a dashboard and key elements. You
could roll it up from the community to the state to a nation. That would be
powerful if we could do that.

DR. MIDDLETON: I just wanted to add one other thought on this slide in
particular which did come up yesterday and some of the folks yesterday have
heard me opine on this already. Two related issues I think arise with the new
epidemiology building upon comments that have been already. If we think about
what Todd Park showed today, those mash ups, combining of data from many
different disparate sources, the idea that there needs to be standardization of
the metadata to describe the data becomes increasingly important. In a way we
need to now have standards 2.0 that will allow us to maintain data integrity
and do these combinations of data that are meaningful hopefully and centrally.

And that raises the second question. I think there is a new epidemiology
also about how to defer or infer from these combinations of data that which
makes sense from that which doesn’t. I am just reminded of my epidemiology
professor who said you can associate the number of telephone poles on Long
Island with the incidence of cancer. Of course it is meaningless. We have to
make sure we know the methods to arrive at reasonable inferences from mash ups
because otherwise we will be chasing bunnies down the rat hole.

DR. CARR: I am reminded of Marc’s observation of the growing incidents of no
cough in Indiana.

DR. FRANCIS: I just wanted to comment that both yesterday and I was also
talking earlier today with Larry that the plan would be and we will talk with
the privacy committee this afternoon to actually meet jointly for part of our
time with populations and talk about what are the privacy questions. Some of
those emerged today in the discussion with Todd as well that as new
combinations of data and new forms of data become available. An obvious one at
the state level is the public use datasets that states make available. Many of
those do it with different constraints. You have to promise you are not going
to try to use it to re-identify, for example, then the federal Community Health
Data Initiative. I am just using that as an illustration. All of those are
tremendously important questions that appropriate practices need to be in place
to have the relevant levels of trust so we can really use the data in its
maximal capacity.

The thought would be to actually plan out for considerable — this isn’t
something that you do in 24 hours to address these questions that are raised by
community emphasis of useful data from the population side and from the privacy
trust building side.

DR. CARR: We have Larry and then Chuck.

DR. GREEN: Could we go to your next slide? It may be now would be a timely
propitious moment to address this just a little bit.

DR. CARR: Okay. Let me just see if Chuck has a comment to follow on that.

DR. FRIEDMAN: I appreciate that. Just to respond to the previous few
comments, I think there is something enormously rich there. It struck me as
Todd was talking about what a culture change this is. From a point of view of a
scientist the notion that data might be treated as a kind of commodity that can
be mashed up is something that gives one great pause because anyone who has
done a study and collected data knows things about their own datasets. This
leads to the sort of protectionist view that many scientist have about their
data which at that extreme is probably not where you want to be either, but I
think there are questions that Blackford was alluding to that go to this issue
of data becoming potentially a commodity. And what would really take that too
far in my opinion would be the absence of sufficiently rich metadata that would
tell you not only what is his, but the quality of it and what it should and
should not be used for.

I think the standards for those metadata are unless somebody knows something
I don’t undetermined at this point and that is a piece of work that is sitting
there needing to be done and I think it goes to some of Paul’s concerns about
finding projects that are really important policy work as oppose to operational
work. I think this hits the sweet spot at least in my opinion.

DR. CARR: Paul, is that — good with that?

DR. GREEN: Let me grab both ends of this amazing spectrum and just make one
wildly philosophical statement, but then I really want to get very granular
about how we are going to function as a committee. The wildly philosophical
statement is there is a strong case that has been made by decades by the
epistemologists that there is no such thing as knowledge without context. And a
lot of our conversation is about that fact or that thing we think we know.
Knowledge as a lump is not really a thing. Knowledge only exists in context.

I will pick on Blackford. Chasing a rabbit down a rat hole is an example of
knowledge in context and how they are critical to interact. Forget that.

Functionally both — we need to unite our conversations today while we are
in Washington meeting and our subcommittee meetings. We are having multi — we
need to unite our various conversations about our committee work. And one place
that seems to me has matured and is ready for us to make up our mind about what
we want to do is the realignment of our committee structure in some manner to
help us be more effective, to help us get staff properly, to help us move
expeditiously. And one opportunity is for the privacy committee and the
populations committee to decide how to functionally work together for the next
stretch of the road.

What we are framing up here today to do there is some urgent need for us to
inextricably link the privacy work and the population subcommittee work. There
are probably very good reasons to maintain the committee structure of whatever,
but I would like to put a little bit of a stake in the ground that we should
for the next at least few months if not 3 years begin to think increasingly
that the populations and privacy committee overlap and moving in concert in
some way.

There is important intersection here that I think we should capture and do a
little reorganization to facilitate and enable and to get away from privacy
working in one corner and populations working in another corner and then is
trying to adjudicate some issues later on in the full committee or whatever. I
would like to move that upstream if we can to where those two communities at
least those two committees to begin to function more in concert.

DR. CARR: I will make a comment and then Walter. I think as we think about
the work that we have done even just focusing on this theme obviously
measurement is a key piece of it and that has been a lot of the work of the
quality subcommittee and of course standards as well. This was the theme that
came through many times yesterday of cross cutting topics that don’t line up
with one or another committee.

DR. SUAREZ: I just wanted to comment on the alignment. I think we are
talking about aligning different things. The way I see it is we are trying to
align domains with dimensions. Those are the two terms I guess I can think of
to use because I can see how population health also needs to work or we in the
data committee or the standards committee need to work more closely with
population health as well.

There are some things I would call maybe dimensions that are the ones that
we talked yesterday about: the population health and the personal health. And
then there are domains that we apply to those dimensions to try to reflect on
the priorities that we need to work on. And then there is going to be certainly
teams that cut across those.

I think in going in your direction we came to that to this picture that is
now being shown that describes the matrix. I think Leslie was the one that
suggested because we originally started with three, the first three. They were
data, privacy, and system performance. And she is just adding community health
and I was having trouble trying to see how that is not so much a dimension
around population health that cuts across the other one.

DR. CARR: Susan and I were struggling with this afterwards as well.
Community health may be a lens that we look through or focus on. We had a
couple of proposals of how we configure.

I think the real issue is that we enable cross functionality in our topics
and that we have a theme that draws everyone in. I think one of the issues that
we talked about is that with our kind of elective piece each subcommittee had
freedom to choose an area of particular interest which may or may not align
with what is going on in the other subcommittees and I think what we have found
is the tempo and the burden. I don’t mean that in a pejorative way, but the
amount of work that you have to do in the amount of time you have to do it
makes it very difficult to have a lot of projects going on at once. And I think
we have had projects that a good hearing and then we stop and don’t take it to
the next level.

One of the underlying themes was to have a vision of space where NCVHS
builds upon our history and expertise and applies it to contemporary emerging
data issues.

MS. GREENBERG: First I want to thank you and Susan and others who
contributed, Walter, everybody for this presentation because it is a very
helpful and just to say that I thought yesterday was a really interesting
important day to start thinking about where we want to go.

I feel that the current subcommittees sort of define the areas that the
committee is working in and where we are looking for expertise. For example,
Jim and I have been involved in recruiting new members and we hope that we will
be successful there because we have a number of vacancies. It is helpful to
know — need to find people with population health knowledge. We would like to
find people with privacy and security expertise. The standards area. We know we
have — that is an important area. And quality has increasingly seems to become
an area.

That is helpful and I also think it is helpful to the outside world to say
we have subcommittees in certain areas. It doesn’t have to be these areas, but
these seem to be the areas that we keep coming back to. But that doesn’t mean
we have to function with those subcommittees meeting separately or having
siloed agendas at all. And I am open to whatever structure the committee feels
is most useful for getting your work done.

But, for example, like this morning when the different privacy issues came
up. I think there are areas that are being worked on by other committees, but
there are clearly areas that this committee has expertise and experience in and
is being looked to. It is useful to know that we have a focal point for
privacy. We have a subcommittee on privacy and the department knows that that
is one of our foci.

Population health, of course, that is identified with a whole history of the
committee but so is data on basically health care delivery going back to
classifications and uniform datasets and all of that. The standards area, which
is a solid area that the committee has always been in for its 60 plus years.
And I think quality is a little newer but it is obviously critical to all of
this and to meaningful use, et cetera.

I see a certain value in having that as our public structure and then just
— at least that is where we are trying to fill holes in expertise and recruit
members. And then you can decide however you want to organize this and however
you want to address particular issues. That would sort of be my take on why I
wouldn’t throw out the baby with the bath water, but I would not feel
constrained or like in a straight jacket from these subcommittees or other
subcommittees that you might feel better define what your areas are. That is
kind of from the exec sec’s point of view and just take it or leave it.

DR. CARR: Thank you, Marjorie. Blackford, let me put your model up here.

DR. MIDDLETON: Thank you. It really is I think the group’s model. I just
happen to write it down. What I was thinking of those yesterday when listening
to all the discussion was we certainly have some new areas of consideration,
things that we might need to think about in the existing committee structure as
defined today with the only slight tweak being — I think quality is perhaps
becoming data concept. We might want to think about performance because
performance assessment around cost, value, quality, accountability, and maybe
things we can noodle on and be useful around.

But then I won’t read all the little thoughts there, but listening
throughout the day many different things came up that might be the new
considerations for the existing committee structure to think about.

Now next to the point, however, of organizational design to get things done
I think we might think about a new structure wherein cross-cutting teams are
formed sort of in a more agile manner or scrum like from software development
world that draws together the relevant expertise for the particular topics or
issues being addressed. The column on the left is the weakest part of this
slide. Whatever the topic is would be what exists on the left, but then we
could draw together membership for a swat team from all of the relevant
committees. This is very attractive to me because I am not an expert in
security or privacy. I know a little bit about standards, but there is a lot
more that members of the committee actually know and is relevant to what we are
thinking about even in quality.

Anyway, I think this is just a new model, fairly easy to do, fairly
lightweight to implement, but it would be a different approach wherein the swat
team should be the focus of the work effort.

DR. FRIEDMAN: Blackford, just a quick point of information. What do you mean
by personalization?

DR. MIDDLETON: The idea that we are going to take a patient-centered view of
everything: performance, quality, your normal test values for your serum sodium
shouldn’t be the population of referent normal value. It should be your normal
values. All that kind of stuff. Not to mention genome, genotypes, et cetera.

DR. CARR: We will hear more about that this afternoon on the quality
hearing.

I do like your idea about performance because it includes quality, but
transcends it in a way and includes measurement and I think that that is very
helpful.

DR. SUAREZ: If I may just make a point. I don’t think these are alternative
models when I looked at them. They are really saying the same thing in
different ways. I think we need a structure. We need some defined
subcommittees. We need the name of those. We need content of responsibilities
of those and we need the ability to do cross-cutting activities as well. There
are going to be responsibilities that a specific committee will be working on
for a specific purpose. And then there are going to be activities that a
committee can take the lead, but can form a swat team or — teams, some sort of
a group that will take expertise from the other committee. I don’t really see
it as —

DR. CARR: I wonder if we had leaders in each of these traditional
subcommittees, but that the membership on a particular topic is fluid and that
maybe you were on — I was on standards with ICD-10 because I know a lot about
ICD-9, but then when we get into metadata, I might not be the right person and
that might not be the best use of my time. It is just hypothetical. I think my
metadata is good.

If you sign up for — and that has happened to me because I have been on
just about every subcommittee except for one. And it is always that you get
there and it is a theme that you are working on and then actually you don’t
have anything to contribute and oh by the way you can’t get to your other
subcommittee because they meet at the same time. Maybe we have leadership in
each of those areas, but the membership is driven by the area of focus. Just
another thought.

DR. FRANCIS: I think that we really need to combine those two. I think we
need to have settled groups and we need to have fluidity of shifts. Unless you
have one you are not going to be — I actually think you have to have one to
have the other as well.

DR. CARR: And the other thing that I think part of putting this all to paper
in this way and maybe in part what Paul is reacting to is we really can’t do
all the things that we used to think we could do. It is just not possible. The
depth of knowledge, the time commitment, and the organization to have this
going on has really stressed the resources of the committee and at times
interfered with the ability for everyone on the committee to be fully informed
about the topic at hand. I think it bears noting that part of this is to stay
thematic and build toward a theme and it may be different projects and require
different expertise, but that we not have multiple directions because I don’t
think we can sustain it and I think that the times now call for a — let’s just
leave it at that. We need to be able to do that.

DR. TANG: I sort of like Blackford’s matrix here. I think some of our best
work meaning it has been most deliverable and most impactful has been out of
our ad hoc groups. If you say all the leaderships have to be there then you add
— you might as well work with the whole committee every time then. When you
pick a group for a reason which includes diversity of opinion then you are
probably going to get a much better result and also be passionate and be
willing to spend the long hours that it took for each of these ad hoc groups.

Another reason why they were impactful was because they were relevant which
means a relevant topic and a relevant timeframe.

What is attractive about this is there still is a roadmap for each of these
kinds of things, but they aren’t the governing — those aren’t the project
product producing groups. The horizontals are more — not that these are the
only ones, but there are things that we could do that would be very relevant
and very impactful and I think those are some of our best attributes of
success.

DR. CARR: I agree and we talked about that yesterday that those initiatives
and I think of ePrescribing and Secondary Uses as two examples. And they were
self-selected groups. Not everybody either had the time or the skill set to
participate in one or the other, but we found a way to do that. I agree. They
have been engaging. They have been relevant and they have been enriched by the
diversity of the number of participants.

MS. GREENBERG: I think ePrescribing actually was done by the standard
subcommittee, but we had the functional requirements. We have the NHIN. We had
the Secondary Uses. It certainly has been effective.

DR. CARR: Next steps. This was just a straw man. We recognize that we
continue our legislative requirements. But my thought was that for the
subcommittees and maybe we don’t need to do this. Maybe we are doing it right
now is to liberate on their roles in emerging themes. The new epidemiology is
one. The governance of a learning health system not limited just to the digital
health care information but really this community data initiative and beyond.

And then evaluate the current — this is for the subcommittees to look at
your current agenda and either reaffirm that direction, revise it, or retire it
to ensure alignment with emerging themes. I am not quite sure what that means,
but just to say if we are going to focus let’s say on the new epidemiology and
governance. Are there things that we are currently doing that align with that
or do we need to redirect?

And then I think before we leave Washington we need to have a clear vision
of what we are doing and how we are doing it.

DR. FRIEDMAN: I think this is great. Just from a very self-interested point
of view I would like to broaden the notion of what the committee might do for
the learning health system beyond governance. We might have coned down on
governance because it was one fairly obvious thing. But I am hearing and one of
my take aways from this discussion is that broadening the concept of the
learning health system to include making best use of liberated data. I think as
we were discussing before there is standards work to be done there. I think
there is standards work relating to the basic functioning of a learning health
system in a more limited sense of using AHR data that I don’t think is going to
get on the health IT standards committee agenda as soon as it needs to if it
gets there at all. I think there may be special population health-related
standards that could very productively come to this committee. It is a long way
of saying let’s not cone down on the governance and maybe let’s broaden that
wording health system concept to include new kinds of data.

DR. CARR: I was trying to say a little bit here and maybe I was saying
governance guiding principles and thinking about how is data integrity
established. What principles were applied to ensure cause and effect that was
community educated. But you are right. Standards you would say —

DR. FRIEDMAN: Not taking that off the table, but putting something else up
there.

DR. CARR: I was using a very broad definition of governance of sort of data
integrity as well as uses of the data.

DR. TANG: Just like Chuck is commenting on the learning health system
agenda, I might say that the community health liberation of data project or
initiative or whatever would be an ad hoc group that was formed because it
probably touches all of our committees for sure. That is another example of a
project that I think. If you want to pick on learning health system as your
project and Community Health Data Initiative as our project in terms of
advising on information health policies and I thought that was in our charge.

DR. CARR: Advise on but not create, not develop policy.

DR. TANG: I understand, but I thought we were more —

DR. SUAREZ: I think another one would be the dashboard concept. I think that
is one where there is an opportunity for cross cutting activities.

DR. CARR: Although IOM convened around it, I believe the community data
initiative is learning health system here and now and a part of it can —

DR. TANG: I don’t think it is the same. Learning health system is far more
though it should be expanded provider centric. And I think the Community Health
Data Initiative is really data 2.0 kind of initiative.

DR. CARR: But I think that — just because ONC has — this is a theme
emerging out of that. Altogether it is the new way of learning. It is taking
digitized information and aggregating it in different ways to get rapid
learning on large communities.

DR. OVERHAGE: As you all know I am a lumper instead of a splitter so I tend
to think of this stuff in chunks. I struggle sometimes with the way we
categorize these things because at some level you are getting data and whether
you are getting data about patients or at community levels of whatever, that is
the set of issues.

There is the set of issues about how to manage that data in a usable format.
There are meta issues to me like how do you figure out if somebody had a
myocardial infarction or not. How do you want to define that? And it is not
just whether they have an ICD-9 code or an ICD-10 code that says it probably
because you get a very different cohort in different situations. That is a meta
issue that bridges across whether it is for population health, clinical
decision support or whatever.

There are the cross-cutting issues of privacy and security across these for
the different use cases with probably different implications and issues because
of who the end users are and what the access processes are.

When you talk about, for example, learning health care system, to me that is
sort of a particular combination of the tinker toys to get somewhere.

DR. CARR: — learning health system for one thing.

DR. OVERHAGE: And personalization is the same to me. HIPAA is — I guess I
struggle sometimes with the segmentations and wonder if focusing on these core
building block pieces might help. It sort of gets to your point that nobody has
the expertise. They are all cross cutting. How you get the data crosses
population health and quality.

DR. MIDDLETON: I wouldn’t suggest actually that this slide was never — it
is not intended to represent the actual topics of focus. These were sort of
examples. Can I just finish the thought, Justine, if you don’t mind going back
for a second? The work flow could proceed, Marc, is obviously there can be
columns of expertise where the roadmap for each column if you will. It says
here the issues pertaining to whatever, the population roadmap standards, et
cetera, and it is that subject matter expertise then which is distributed
across these cross-cutting teams. And further a cross-cutting team can send
back to the column something that needs to be focused on if you will sort of
pure matrix style.

DR. OVERHAGE: And I guess what I was trying to sort out is what are those
blocks that we want to think about.

DR. CARR: If we made this last specific here or broaden it because I think
of the term as learning health system as all of the above, the data initiative
as well as the ONC data. But if we talked about two things, the new
epidemiology that Larry was talking about and then learning health system and
sort of guidance tools of the road that are in this new environment that we
need to think about.

PARTICIPANT: — how are those different, for example — epidemiology is what
you need to be a learning health system which then — it is part of the cycle I
think.

DR. SUAREZ: I think part of what we are trying to do is identify work stream
topical areas that include several aspects inside of them. For example, saying
learning health care system or saying just learning health systems doesn’t tell
me anything. It just tells me that there is a whole host of activities within
that can be tackled by the committee through work streams. Inside the learning
health system there is governance and there is data standardization across the
board. And there is system performance measurement.

Learning health system is one area that we can concentrate and form
different swat teams and different topics within the learning health system. It
is not that we were forming a swat team or whatever we call that into focusing
on learning health systems, the same thing with the community health IT. And to
me community health is very much tied to the new epidemiology concept as I
think I remember hearing from Larry, his perspective on that. I think it is all
part of that same concept. Looking at community health you have several things
to look into it. It is not one single report on community health or on learning
health.

DR. CARR: I guess it is thematic. I have both of these together that as we
are doing one, we are also doing the other as we are learning about the new
epidemiology, what are the data, how are they used, who is in charge and were
they effective. At the same time we are deriving area gaps and opportunities
for governance and oversight of these.

DR. SUAREZ: But I think we have to go down to identifying the topic that we
would focus on a little bit. Again saying just new epidemiology doesn’t help us
in saying this is the work stream and this is the topics we would focus on. I
think in my mind it is more — we are going to become the committee where
learning health system will be a major focus and there are several things
inside there. When HHS wants to receive feedback from an advisory committee on
learning health system, they know that this committee is now working on it. A
lot of it is really being able to tell outside the world what we are doing and
what we are going to be focusing on over the next 2 or 3 years so that they can
perceive us as this is the place to come for advice. Learning health system is
one. The dashboard is another one. Community health is another one. Personal
health is perhaps another one. There are those kind of work streams that —

DR. CARR: I have Leslie then Marjorie then Paul.

DR. FRANCIS: One of the reasons I like both having the notion of some are
traditional areas of expertise and having the sort of nimbler we are going to
assemble groups that might address special issues is that I think we need to
have the capacity to both be responsive and to surface new issues. I think
without our traditionally identified groups we could lose the capacity to
identify longer range issues.

I will give an example that actually has nothing to do with privacy. When I
first came on the committee, Marjorie thought that I would also want to be very
involved in populations because she knew I had written a lot of things about
issues and justice. One of the questions that it seems to me that a populations
committee might surface would be the question of because we are the advisory
committee about vital and health statistics. It might to say look at all this
wonderful new data that we are getting. There are a lot of groups that are left
out in this data. We don’t have it or we have it imperfectly. That is a
question a populations committee might surface. Of course that might not be
true, but if what we are doing is responding to with the 3-year timeframe, we
might lose some of that.

DR. CARR: Marjorie then Paul.

MS. GREENBERG: I don’t know whether it is because we are sitting next to
each other because we went to the same college at the same time, but maybe it
is a cohort effect. I want to support a few things. We seem to be on the same
wavelength, Leslie and I on some of these things. I think this mixture is good
and there seems to be a certain amount of consensus of these traditional areas
where people know they can come to the committee and that we have expertise,
but also going across areas.

In a way I see this — well, first of all I feel it is within the tradition
of the committee, which I like to hold, but to take something like this term
learning health system and broaden it. I remember when we talked about this
maybe in June or maybe it was September with you, Chuck, and we said does this
really involve population health and everything. You said absolutely. But I
also was really struck by that definition that was very health care oriented.
That is fine.

These meetings have been what they are and as you said the IOM report will
be what it is, but it is completely I think within the scope and traditionally
something that the committee does to take something and then broaden it. And I
think that is what we are talking about. Whatever comes out of the IOM report.
I don’t think that will — it will just stimulate the committee further.

But I kind of see this almost as — we talk about health 2.0 or the internet
2.0 or 3.0 almost as NHII 2.0. The committee now 10 years ago put out that NHII
report. Now I think the NHII in a way from an operational point of view got
sort of overtaken by the NHIN and then the electronic health records and
everything. But you go back and you look and we agreed yesterday. Those three
concentric circles and they are showing up in various places on these slides
even if not in circles still simple but powerful that all of those areas need
to be involved and I think that is what we are saying about this learning
health system and the new epidemiology too. I think population health could
have been community health. It can also be monitoring health at the national
level. I think there are lots of components to it, same with personal health,
and same with health care.

I see this all very — it is not so much that it is linear. We don’t want to
be linear, but it is just building on it. And the same with this health
statistics vision for the 21st century that there we were talking
about influences on health and that is exactly what we are talking about now
with this community health initiative. All the different kinds of data that
need to be brought to bear and that is the community health initiative and it
will feed in with the learning health environment too.

I am energized by this, but I think they all kind of come together.

DR. CARR: I think it is true when you keep going back to these diagrams and
they are very prescient.

DR. TANG: — this IOM committee because there is a follow on IOM committee
and I just want to make sure. I looked it up and it is an ad hoc committee to
the issues and urgent actions necessary to foster development of learning
health care system design to generate and apply the best — for collaborative
health care choices for each patient and provider to drive the process of
discovery is the natural — it is the same sort of definition. In other words,
there is an IOM committee now formed as a sequel to the roundtable exercise
that Chuck described that is going to consider actually the topics. Other
people consider this important too is what I am saying. I think there is
another group that is going to tackle a lot of these questions.

DR. CARR: So two things. One is I agree with Marjorie that the information
infrastructure transcends the health care stuff, but Chuck, you were specific
in that you felt that this would be an appropriate follow on from that work to
the NCVHS.

DR. FRIEDMAN: My thinking was and thanks Paul, I didn’t know about that.

DR. TANG: I assumed that you had funded it.

DR. FRIEDMAN: No. There is so much going on and I might have known about it
and forgot about it which is also possible. To the extent that as you put on
one of your previous slides, Justine, I think there is going to emerge a
natural leadership/coordination role for ONC in this going forward building
this on top of and out of a number of things that are already
government-initiated efforts. And to the extent that this is an advisory
committee to the government, it makes sense organizationally as well as
substantively in terms of what the topic is for the government agencies within
HHS that are engaged in this to call on this committee for advise around
specific issues that are sure to arise. I don’t think the IOM can fill that
role.

The IOM was perfect to do these studies for us and I am sure this other
undertaking when I find out what it is will play an important role as well, but
there is something that is a natural set up about an effort being coordinated
by one government agency with lots of others involved and a federal advisory
committee which is in the business to give advice to the government.

DR. CARR: Jorge. And also can you introduce yourself. I know you got here a
little bit late.

DR. FERRER: I am Jorge Ferrer from the VA staff and the committee. Justine,
could you go to slide number 20? Data. We have talked a lot about data this
morning. Standards, metadata, inoperability. We do have to also I think put a
place holder on capturing the data. That is that human computer interface that
has driven a lot of the problems with usability to the point that Marc Overhage
was talking about. We always talk about the data as sort of the — but getting
the data in the system is really painful, extremely painful — for a lot of
different people. It creates some real problems for people. I don’t want to
beat a dead horse because — Chuck has been admitting that, which is great.

DR. CARR: We talked yesterday about the importance of having a customer. I
think we heard a pretty resounding, enthusiastic response from Todd Park today
in terms of our collaboration with him. Again, as we are trying to figure out
what is IOM doing, I think Todd was pretty clear that we have expertise that
would be very useful and there is a very clear roadmap ahead in the next couple
of months of what is going to happen. I think that is important. I have Bill
and then Sallie and then —

MR. SCANLON: Actually following up on what Jorge said, I would like to go
back in part to where applications are under HIPAA and sort of in ACA. And it
is not just — the Accountable Care Act is not just a question of when NCVHS is
mentioned in my mind. It is more a question of what is trying to be
accomplished. I think of our role in some ways. What is HHS’ set of
responsibilities and do they have the data that they need to fulfill those
responsibilities? Our role as an advisory body and data is to say here is what
you need, here is maybe a vehicle for collecting it or gathering it and that
that is critical to what we do.

The Affordable Care Act — if you think about the premises that are in there
in terms of creating ACOs, creating bundles for payment purposes, creating
value-based purchases, there are huge data needs in order to accomplish those
tasks, data needs that are not being met right now because we don’t collect the
necessary data. We don’t have the methodologies to use the data even the data
that we have optimally. There is this question of how do we move forward.

I think that there is a natural connection between what Blackford relabeled
performance and standards because one of the vehicles for capture is what we
specify through HIPAA as the data that are going to routinely flow and how we
change what that routine flow is now because we have the potential for
electronic health records I think is the key question for the immediate future
because this is going to be the foundation that is going to allow the
construction of all kinds of other things: dashboards, learning health systems,
et cetera. Without the capture you don’t go anywhere. You don’t make progress
unless you have the sufficient dataset to be able to build the kinds of
applications that you want to have.

DR. CARR: Were you saying data — data needed for assessment of health care
reform or for —

MR. SCANLON: For performance. It is more than — in the assessment of reform
in kind of a macro sense. This is getting down to an individual level. This is
down to the patient. Should we pay X dollars for this service? Do we know that
that is the right thing to be doing and we don’t have the ability to do that
right now. And yet within the context of the health reform bill we are saying
we should be able to have the context to do that. We should be able to say if
these people are members of an ACO, this is what they are expected. This is
what the experience should be. And did they have that experience. If not, we
shouldn’t pay for it as if they did. It is things like that.

An ACO is — while they have gotten an incredible amount of attention, they
are going to be the exception for the immediate future. We are not going to
change the system overnight. This is going to remain largely a fee for service
system and we need to think about — within the bill there are provisions to
change how we pay fee for service. The question is do we have the capacity to
make those changes appropriately. And that is I think the real challenge that
we have to face. We are not the policy committee in terms of having to say to
HHS here is the new payment methodology that you should use. We are the data
committee which is to say here are the data. Here is a way for you to get the
data that are necessary to make the policy changes that are important for the
future.

DR. CARR: Sallie and then Paul.

MS. MILAM: I have been thinking about Marc Overhage’s comments in terms of
lumping versus splitting. I tend to go down to the more elemental level. And I
think just to look at some of the privacy mechanics might be useful as we parse
these issues. When you think about the rapid learning health system and a lot
of it being focused on treatment and clinical care, health and health care, we
have HIPAA and we have a number of tiger teams focusing on helping to
illuminate those rules around treatment. You have them around payment under the
Affordable Care Act. You have ONC’s privacy and security framework. And you
have a lot of other work that NCVHS has done in the health care arena. And you
have people already focused on doing that work.

You don’t have another group focused on the privacy population health area
which really impacts both the community data initiative as well as the rapid
learning health system. You don’t have a uniform de-identification standard.
You have a variety of standards within the Federal Government at the state and
community levels and people don’t understand how to apply them. And this is an
area where I think it would be fabulous to partner with population. Those folks
have the expertise. What it comes down to is figuring out what are the best
practices. What statistical disclosure limitation techniques are appropriate
that epidemiologists help you with so that you do have privacy? And that is an
intersection that some states have done really well, some communities have done
very well that is really cross cutting and I don’t know of another group who
has really centralized and illuminated all of the best practices that are
readily transportable to other environments.

Because as I have been looking into it and states and communities are
grappling with this today, you have to see what other data is publicly
available in your area. You need to understand your own population. You need to
understand your own data. And it is difficult for people to pull all of that
expertise together to understand people who figured it out, what worked for
them, and how to just put out a framework so that people can liberate their own
data.

Right now there is a lot of data collected, a lot of very rich data that has
held up. People can’t get it to researchers because they don’t know how to even
respond to research request. They want to apply minimum necessary so they don’t
give everything to the world, but what is appropriate? Then beyond that what
can you give to a researcher? Do you want to better understand their request?
Do you give them everything? What if you have already given them data that
year? And then they have cumulative data. What if they want to publish a
report? How much can be re-disclosed?

A lot of people have thought through this very well, but really I don’t know
of one go to source that has best practices or recommendations or standards
that are really easily applied to different jurisdictions and I think this is
an area that would really be very cross cutting through all of these different
areas as opposed to continuing to stay more in the treatment area.

DR. TANG: I was going to ride on the data bandwagon from that side of the
room because I think that feels more where one there is a gap. I don’t know of
anybody who is working on this. And two, it seems not consistent with —
congruent with NCVHS’ charge.

It starts with part of Chuck’s emotional impact about well it is one thing
to describe mash ups which is a technical way of putting things together on a
website, but it is not a technical way of understanding what the data means. To
Jorge, well, it is really hard to get data in, yes, and also to have it
understood not only by your own programs that are sucking the data up, but
trying to get it out of the human but to try to pass it on.

There is incredible, as you know Justine, an incredible amount of FTs that
are spent just trying to understand your own data from the applications that
you either bought or created yourself. To think that that would transmit to
someone else is really — it is uncomforting in terms of what they are going to
do with that data.

So then that goes to what Larry said which is the data and the context.
Nobody is really looking at that or trying to appreciate it both the
implications from a technical point of view, from an intellectual point of view
and from an understanding what does it mean to the consumers and patients that
are ultimately going to be affected by it either by viewing it on their own
which is now being possible or through the intermediaries we call clinicians.
There is a lot in between that and it seems like that is not something that IOM
is working on. It is not something that the government is working on, et
cetera. It is a gap and we are called the national committee on essentially on
health data and it seems like we need to render at least raise the awareness of
this issue as it really proliferates the use of the spread of this, et cetera.

That seems like something that there is a gap. We do have expertise because
it relates to, again, all four of subgroups, et cetera, and it is very urgent
that we deal with this.

DR. GREEN: I want to go back to functioning, Justine, just for a second.
Paul, not that immediate comment but Paul Tang’s comment back where we were
asking questions of ourselves about overlap redundancy, that sort of stuff. I
think that is an important principle that we attempt to follow anyway to my
knowledge. I am not sure but given Justine using your word tempo. Given the
tempo of developments, I am wondering if we don’t need our standardized way of
making inquiries of the relevant players when we start formulating explicit
questions that we are going to explore to make sure that we are not stepping
into someone else’s territory and that sort of stuff is — just from this
morning.

I am — just from the populations subcommittee’s point of view, I feel like
that we need to formulate explicit questions that are going to tackle and start
getting the answers to. And I feel like we need help getting those questions
right and we need help in knowing if those questions are already being asked
and answered someplace else. Todd, Ed Sondik — we could develop a list here.
But it is almost as if we need a rapid means of determining if what we are
headed toward is an alignment and not redundant. That needs to be systematized
in my view to help us function better.

Before we plan a hearing, before we commission someone to do an
environmental scan for us, it seems to me we should insert a step here where we
— literally within 2 or 3 days. There can be the right people polled and ask
if this makes sense to Chuck. Has he already financed it? It is already being
done somewhere else or not? And when all of those people say no, it is not
being done and yes, it is important. No, it is not being done and yes, it is
important and Marjorie looks at it and says that is in scope. That is a go.

Maybe I have been missing this for the last 3 and half years or so, but I am
not seeing that done systematically as I think the tempo of the events
requires.

DR. SUAREZ: We have people around this table. Paul Tang, Chuck — Paul leads
a lot of these initiatives — there are people here that understand very well
what the pressing needs are, short term, long term and the future. We really
need to listen to the guidance because the paucity of effort. No. It is just
redundant of no value. When Paul Tang says focus on something that nobody else
is doing.

I think NCHS when it sat by itself, it was an easier place to live. And now
you have all these other advice for committees within HHS are doing phenomenal
work, but it is easy to tell people to collaborate, but what does that really
mean. What is the product going to look like? I kind of always look at Paul
because when he is chairing a lot of these committees, he knows exactly what
the pressures are because he has to deliver them.

DR. WARREN: I guess I was just responding a little bit to Larry about the
way around and asking permission or not asking permission, but is anybody else
working on this. That sometimes the topics are coming so fast I don’t think we
have the time to do that. I think this committee needs to be informed enough to
do it. There is just something about the committee asking permission to do its
work that bothers me. I don’t think we need to ask permission. One of the
luxuries that we have that I think some of the other FACA committees don’t have
is we can set our own agenda as well as the agenda that the secretary and that
the Congress sets for us. And I would like to keep that ability. And I think
even if we do look at some of the same issues, I think the issues are so
complex I don’t think we will ever be redundant. It may even be a good thing to
have different perspectives being focused on the same issue.

DR. GREEN: I did not intend for my comments to be construed to have anything
to do with seeking permission. I think the independence as a committee really
matters.

I would just rotate from what you said. We do not have the time to redo what
someone else is already doing and we just didn’t have the good sense to inquire
whether that was being covered. Mine is just a highly functional, technical
step that I think we should formalize to avoid wasting our time. It is not a
requesting permission, but if someone else is studying. But we say but they are
not going to bring the proper perspective. I think we go right ahead and do it,
but we need — I believe we have an acute need to know what is going on in a
rapidly changing landscape. We talk about a rapid learning system. We need
something like a rapid detection system so that we can actually align our work
and coordinate our work effectively. That is all I am talking about.

MS. WARREN: — is that we need to be an agile organization. If we have too
many rules on how we go about doing things, we become not agile.

DR. CARR: I want to make us aware the fact that we have 15 minutes until we
go to lunch. And in order to have the full hour of lunch we want to make sure
that we are parsimonious and focus on our comments. With that, Blackford, your
hand was up and then I really want to bring it back to what is the work that we
need to do today so that by tomorrow we have a very clear roadmap, thematic
direction, and configuration. I have three hands up. I am assuming that you are
going to tell me what that answer to what we are going to do.

DR. MIDDLETON: I did want to say very quickly to build upon the prior two
comments about not asking permission, but what are the requirements, if you
will, from the world that we are aiming to try to address because that upstream
perspective, if you will, tries to satisfy the customer and the need and
relates to the next comment. How do we actually evaluate the NCVHS? Who do we
ask are we doing a good job? Not that we need their permission, but that as a
good committee of any kind or as a good worker of any kind, you should evaluate
the product with the fruits of labor. I wonder who assesses our work. How are
we evaluated? Who are the stakeholders specifically customers that actually
would care so we can address the question. Are we relevant and really doing it
in a formal and a discipline way? I think that would be a mark of a very high
performance team that it would be evaluating itself. I think there is the
upstream issue of getting requirements right, the evaluation process.

And then downstream there is this whole space that we don’t address well. We
think that our products are self validating and marketing in their own right
and they are not. Any other team of this form, a high-performance team of this
kind might have a marketing committee. Whatever you want to call it.
Communication and dissemination. A lot of our major grant programs now have
whole funding line designed for dissemination. I wonder what is our
dissemination strategy as a component of this we look at NCVHS.

DR. CARR: Excellent. Leslie.

DR. FRANCIS: I wanted to say that I think in a way the most important part
of our meeting is the final session where too often we have just sort of had
report outs from subcommittees and people have then gone their separate ways. I
would like to suggest that what the subcommittees are going to be doing is
essentially in light of what we have talked about working out something that
looks like this is our year’s plan, maybe even a little less sketched out a
2-year plan, some of that sort. But what is utterly critical is that we have
say an hour at the end where each subcommittee takes 10 minutes and then we
talk about them together.

DR. CARR: Agree. Excellent. Someone else had their hand up. Marjorie.
Whoever speaks let’s just with a headline and we don’t need to elaborate now.
If we need to elaborate further, but headline, Marjorie.

MS. GREENBERG: I don’t know Walter was next. I just wanted to say because we
don’t have time, but I think Blackford has raised some good points. We do have
some ways that were required and we attempt to do to evaluate what happens to
the committee’s recommendations and all that. I know that Debbie and I and Jim
who are involved in this would be delighted to engage further on his — I am
not answering them but to say that I think that is something that could be
discussed in a future, executive subcommittee call or meeting.

DR. CARR: Great idea. We have heard some terrific ideas and we need to —
and I think we are close to the direction. I think this has been very valuable
to sort of step away from where we were yesterday, build on that, and get
focused and feedback.

MS. GREENBERG: What I am thinking is now the subcommittees really need to
discuss this rather than trying to come to closure now. We can come back
tomorrow.

DR. CARR: I think that was the original plan to take the discussion that we
have heard today and come back with a direction that fits with the general
themes that we have heard: a learning health system, our role in advising on
data, our ability to assess the gaps and to ensure that the data is what we
need to assess health and health care reform.

And then thinking also about what is going on now with the community data
initiative and the privacy population privacy that Sallie brought up. I think
these are wonderful ways of defining the areas that we are going to look at. I
think take that back. We will meet this afternoon and we will spend time and I
agree very strongly with you, Leslie, that that last hour or more is our most
important time. We sometimes don’t have as much time as we need. Let’s think
about that.

And again come out of the subcommittees with some bullets and some action
steps so that we will have sufficient time to know exactly what we are going to
do and when we are going to do it.

I think with that we will break for lunch a little bit early and we will
come back here at 1:30 sharp.

(Whereupon, at 12:23 pm, recessed for lunch.)

A F T E R N O O N S E S S I O N

DR. CARR: Welcome to the afternoon session of the National Committee on
Vital and Health Statistics. Debbie, do we have a dinner check?

MS. GREENBERG: We need to know how many people are planning to come for
dinner. It is at the West End Motel, one Washington Circle that we went to
about a year ago.

DR. CARR: Located on New Hampshire Avenue between K and L Streets.

MS. GREENBERG: It is walking distance from here although the weather is —
how many are planning to come? About eight. Mark Hornbrook said he was coming.
Nine.

DR. CARR: Next up is the quality letter. Blackford and Paul.

Agenda Item: Quality Letter – Quality Measures
Roadmap – Dr. Blackford Middleton and Dr. Paul Tang

DR. TANG: We will tag team this. I will give an introduction and then
Blackford will go over an initial read of our recommendations. We are not going
to present it to for a vote because we want to go through the process of it
going through the executive committee, et cetera, before coming here. This is a
continuation of some of the things we have introduced in the past meetings and
we will just go over some of these things and report on the hearing.

The first thing is what are the key questions. What is the issue that we are
addressing? Why did we choose the issue? That is pretty easy. Justine said to.
What did we hear from the testifiers? What are we recommending and why and some
areas of controversy?

One of the reasons we embarked on this roadmap for quality measures is
because I guess we are saying we are not completely happy with what we have.
Why is it? Well, most of it is of course based on administration claims data,
and a lot of it is very inward focused on the medical model of doing things.
What is it that happens in a hospital? What is it that happens in an exam room?
And very little is patient centered or understandable. Those are two things
that we want to look into.

Also there is a lot of convenient sample bias which is well we know heart
disease is a big thing. We can measure lots of things in there so a lot of our
measures focus in on things like cardiovascular care or on preventing cancer. A
lot of things by convenience not necessarily what is important to everybody.

We wanted to set up a roadmap looking at well what should we be measuring,
for whom, and from whose perspective. That is sort of the perspective we took.
We had a hearing and the goal was to focus in on the multiple of people who
could be interested in quality measures, primarily concentrating on the folks
who are really ultimately interested in the quality measures which are the
consumer patients. It is nice to say. It is easy to say, but when you look at
the existing quality measures with that in mind you go I am not sure that this
really is helpful to people we are trying to address.

Knowing that those might be our primary target there are other people who
depend on these measures and will depend on them even more so within a few
years like the payors and the accreditors, et cetera. We want to take those
folks’ interests in mind, but probably from a secondary position rather than a
primary. And as you know again if you think of HEDIS a lot of it has been
driven primarily by let’s say payors. Knowing that this is a different place, a
different destination we are going to have to find a different roadmap to get
to this different place.

The importance of identifying effective quality measurement is to give —
are several. One is the folks that are involved in the “care”
delivery process like admissions. It is really important if we are trying to
influence what they deliver that we measure something of interest to them. One
of the top principles is let’s come up with something that is very credible
with this group.

The second piece is the health care reform which means we are going to be
measured on more things than just individual processes and structure, but
talking about population if you think of just ACOs by definition talking about
populations like my colleagues —

And ultimately as I set up the whole discussion as we want to focus on the
patient, what they are getting out of it, and what is their experience of this
whole process. We want to take advantage of the stuff we heard this morning on
the new sources of health information whether it is directly from the patients,
from the providers, or other sources like CDC and other sources that generate
health data or data that is relevant to health which can be more than the
traditional form. Larry mentioned education, environmental issues, and
social/cultural issues. All those things impact individual and population
health. That is one of our primary motivations for even approaching this topic.

We took in a number — we had a hearing and took in these various
perspectives and tried to identify the gaps of where we want to go and a vision
that I sort of painted from where we are. We realize that we needed to focus as
I mentioned on more on the patient’s perspective and take advantage of this new
data.

I think what I am going to do is turn it over to Blackford who is going to
go over some of the recommendations and some of the rationale or reasons for
those recommendations. Again, this is just to expose you to some of these
ideas, get your feedback, and then we will take it back to the subcommittee and
work on a letter to present back to you.

DR. MIDDLETON: Thanks Paul. Going on to the next slide. There it is.
Recommendation one. Let me just say thanks to Debbie who really marshaled the
subcommittee all the way through this process in an accelerated fashion and was
really super to work with. Much appreciated.

As Paul said, the backdrop here is really all about looking at quality
measurement and the future of quality measurement in the light of emerging new
data sources, new methods for quality assessment, and brought our construction
of quality and the impact of both health care and other determinants of
premature morbidity/mortality on outcomes to get a more comprehensive picture
of health wellness and disease.

Recommendation one as Paul alluded to sets up this new focus on a patient
orientation toward quality measurement. Well, you might think aren’t all
quality measures sort of patient oriented, but they are not really. It is about
changing the hemoglobin A1C sufficiency metric from over 7.0 for the population
to what is the hemoglobin A1C desired for this patient given their disease
profile, their genetic makeup, their context of care and their social supports,
community health, et cetera.

This patient orientation is really fundamentally a paradigm shift and that
word came up in the middle of the hearings and our deliberations. We thought it
was paradigm shift or C-Change and to get this right we have a lot of work to
do to reorient things. Why current measures lack relevance to all stakeholders
from this patient perspective particularly the patient of him or herself.
Patient-oriented quality measures or existing quality measures aren’t used much
by patients. In fact, right now when I go buy a new car, I will look up the car
on every website that has to do with autos and compare every feature of that
car. And now we know that patients maybe surf health grades and stuff like
that, but don’t actually use all the data that they could in making their own
individual health care decisions and what not.

At the same time we wanted to make sure that this patient focus didn’t
increase the burden on reporting for health systems and providers in
particular. We want to make sure that is addressed as well.

DR. CARR: Do you want to cover all of them first?

DR. MIDDLETON: Either way.

DR. FRANCIS: I had a prior question that got alighted between you and Paul.
I got on the website last night in preparation for this. I wanted to see if I
could read the transcript and I couldn’t find it. I wonder if you could tell us
a little bit about who testified, something about — the agenda was there, but
— and there were some slides from people and the Booz Hamilton report that you
had, but I just would love a little bit more understanding of —

DR. MIDDLETON: I happen to have that handy, Paul.

DR. FRANCIS: That would be great.

DR. MIDDLETON: So the four panels were constructed based upon the big
stakeholders that were identified and I think that was — was that listed at
the beginning? We viewed the key stakeholders as panel one focusing on what
information and measures will consumers need to execute their functions as
educated purchasers and stewards of their own health. It is a real consumer
focus.

DR. FRANCIS: And who were the consumer groups who were there?

DR. MIDDLETON: Eva Powell, National Partnership for Women and Families, Judy
Hibbard, Institute for Policy Research and Innovation at University of Oregon,
and we had a couple of others. I have a draft agenda.

DR. GREENBERG: I can say that draft minutes have been distributed, but only
to the subcommittee obviously and I just think putting in the back of our heads
from a process point of view I think there is a transcript — obviously the
lead staff person who would have gotten the transcript posted probably as you
know was Cynthia, but that is really not an excuse.

DR. MIDDLETON: I can give Leslie the sense today.

DR. FRANCIS: It would be really helpful.

DR. GREENBERG: In a way — since we are not going to be voting on this
letter as I understand it at this meeting, the minutes will be available, the
transcript will be available, et cetera by the next meeting.

DR. MIDDLETON: I may have missed the set up if that wasn’t said. This is
trying to give the committee background information on why doing a quality
roadmap letter. A draft letter has been constructed but we want to give you the
back drop then give you testimony and minutes and then the letter for your
review and deliberation of that. The next meeting we will fine tune.

Panel two was all about providers. What information and measures do
providers need to improve quality and increase accountability? Fred Rachman,
Chicago Community Health Services, Yael Harris from HRSA, Terri Collin from
Indian Health Service.

Panel three. What do professional organizations, accreditation organizations
and regulators need to assess clinical performance across the continuum? Kevin
Weiss from the American Board of Medical Specialties, Margaret VanAmringe from
the Joint Commission and Rebecca Lipner from ABIM.

And the last panel, what do payors and group purchasers need to measures of
value and health care and use it for decisions about coverage? David Stumpf
from UnitedHealth, Barry Bershow from Minnesota Community Measurement and we
had one more. I am sorry I don’t have it here.

PARTICIPANT: Arnie Milstein.

DR. MIDDLETON: And it was Arnie. Thanks.

MS. JACKSON: Thanks much to Matt Quinn who helped organized — pulled it
together — amazing job out of AHRQ.

DR. MIDDLETON: The second of three recommendations has to do then with this
idea of measurement of patient interaction with the health system and even
performance aspects of the health system I think. The recommendation is improve
measures of quality, cost, value, accountability, and experience that are
patient-focused and assess the interactions of the patient with the health care
team and health system.

There are reasons for this I think we have talked about and done already.
Gaps in the existing measurement framework relating patients and providers and
accountability in health care, providers identified gaps in standardized
criteria for quality measurement, regulators need measures across sites and
episodes, payors need methodologies to assess value and efficiency, and
consumers want information and transparency about cost and cost needs to be
assessed across the continuum of care with better consistency.

And the last recommendation is really thinking about all the ways in which
these data might be used or these assessments might be used across the entire
health care system in the oversight roles. For those stakeholders who are
concerned about accreditation or regulation or licensure or certification hope
that a new quality measurement system can help them with their assessments. The
recommendation is regulators, certifying organizations, and payors should
actively be involved in the coordination of information requirements to support
creation of measures to assess quality, efficiency, and competency to ensure
that they meet their goals in overseeing the health care system.

The reasons why: maximizing the utility of current and emerging data sources
of rich clinical data in addition to administrative data, coordinated
measurement from the provider’s perspective to manage the burden of data
gathering, and maintenance of certification needs being addressed and real time
use of quality data in a learning health care system.

We had a whole bunch of recommendations actually which were boiled down to
three with Justine’s guidance and members of the committee. And we tried to
keep them very punchy and sort of high level, but get the right words in there
so that the full spectrum of issues that we see in a quality measure roadmap
can actually be addressed. We can pick out and address.

Next I guess, Debbie, last thing is what is controversial about this or
where is this really going to need NCVHS’ attention. It does represent a
paradigm shift and the full implications of that are not even yet appreciated.
We will have to think all that through. Patient generated information or more
generally new data sources can have variable quality and integrity to the data.
We will have to figure out how to use new data sources appropriately.

The difference between internal and external measures of quality. Can they
be harmonized so that what providers are measuring for their own performance
assessment or quality assessment is the same or meaningful to what other
stakeholders, patient, payor, accreditor, et cetera might need.

Making sure we don’t increase the data collection burden so we don’t have
clinicians as data clerks, et cetera. Can we measure cost in a normative way
across the system? I wouldn’t say it quite like this, but how do we assess
accountability so that we can not only determine how patients feel about their
relationships to their providers, but assess also to the providers feel
accountable and then make an assessment of accountability as a key construct of
health care reform obviously ACOs, et cetera.

That is what we wanted to do today just present this background and open it
up for discussion and then give you some homework between now and the next
meeting.

DR. FRIEDMAN: Blackford, this is really interesting and really important and
thought provoking. Just a comment about recommendation one which probably
relates to something you are thinking but just didn’t write down and I wonder
if it is important to write it down and that is there is an enormous knowledge
challenge posed by recommendation one which is the knowledge required to come
up with the optimal hemoglobin A1C for Mrs. Smith as opposed to a uniform
target for a whole aggregated group of folks. I think everyone around the table
appreciates the magnitude of that challenge. And if that number isn’t plus or
minus some small amount, the right number for Mrs. Smith, it kind of deflates
the purpose of the whole effort. I wonder if that challenge in actually making
this work is large enough that it should be explicitly called out.

DR. TANG: One response to that, Chuck, is we have been thinking about this
in different settings. Remember appendectomies at least before CT scans you
needed to have something like 10 percent normal appendix when you operated
because if you had zero then you were missing — in the same way not everyone’s
— your example is hemoglobin A1C. Even though the guidelines say less than
seven, not everyone should be less than seven. But there is some statistical
distribution of measures that should have some kind of mean. Whatever that is
you can’t have everyone less than seven because you probably are bringing some
people making them —

The same kind of looking at it not just as a number and shooting for 100
percent that is an example of how you might turn this into a personalized goal
— I mean accommodate personalized goal —

DR. FRIEDMAN: I just want to be sure I understood the recommendation. I
interpreted this recommendation to mean that every individual would based on
some complicated algorithm have a goal for that individual which takes that
individual’s individuality into account. And the quality measure then for a
provider, for example, would be how many of that providers’ patients met their
individual goal irrespective of what that goal happened to be. I am having
trouble relating that interpretation of the construct to what you just said.

DR. TANG: At the individual’s practitioner level they would be working with
each patient with their goal, but would be measured from a population point of
view or an ACO point of view or a society point of view based on a distribution
around that goal. Does that make sense?

DR. FRIEDMAN: I get that. My whole comment was directed at the difficulty of
establishing with validity the goal for each individual patient.

DR. MIDDLETON: I think the point is well taken because there is not yet a
knowledge base to customize everyone’s unique distribution for their own
quality parameters. There is the statistical norm which we can, I think, start
with, but this actually goes right to the new epidemiology. How do we combine
all the new data sources as well as genetic profiles, personalized factors, as
well as context, environment, behavior context, et cetera and make for you your
right to hemoglobin A1C target or whatever the case may be. It is very exciting
from a patient’s perspective because it actually is what I need to know from a
provider’s perspective I think equally exciting because it is what is the
reasonable target for this patient as opposed to some nonsense.

DR. CARR: Right now we have a list and it goes like this. Walter, Leslie,
Garland, Mike, Bill and Jorge. I have a question too. Quick and to the point. A
headline. Say it once. No need to repeat it. That is everybody.

DR. SUAREZ: I have two very short questions. The first one is about — it
seems that we have several initiatives going on around quality measurement.
Certainly there is the whole effort around quality measurement for meaningful
use stage 2 and 3 and a lot of discussion around what the measures and what the
philosophy is. There is the national health care quality strategy and plan that
HHS is developing and there is effort. How do you see this effort advancing
both of the other two or complimenting the other two? I am thinking out of the
first recommendation shifting the focus to measurement development that
supports the needs of patient seems something good to do.

The other two I am struggling a little bit with how they really do the other
efforts that are going on. That is my first question.

DR. MIDDLETON: I guess my quick reaction would be I think we of course aim
to be informed by whatever the existing health care strategies for quality
assessment are from whatever group, but NQF’s role is to say well here is kind
of the next set of issues that have to be worried about. NQF, for example, has
done a great deal of work around the quality dataset and elaborating measure
framework and all that abides by the sort of old now in the new paradigm the
old approach to quality assessment, population base. This suggests that there
is a new approach that measure developers and framework developers and others
will have to consider. And that is the level that we are at. Pointing a new
direction.

DR. SUAREZ: But this is recommending a new approach to be developed by
someone or that we as a committee begin to then look at developing that
approach.

DR. TANG: I think we are painting a roadmap for quality measures 2.0 and
this is the expansion of the perspectives and the things you measure compared
to where we are today. The proposals that we write are quality. We sort of
develop a consensus driven roadmap for quality measures or for national policy
at input. This is just advisory.

DR. MIDDLETON: It is a good question because this is establishing a new
direction. All the different landmarks or weight stations on a roadmap have not
yet been defined. One could elaborate a series of work products or request of
agencies and suggestions. What I don’t know — this is the first time I have
been involved in a letter like this. Do we actually go so far as to say ONC
should do X and HRQ should do Y and NQF should do Z?

DR. FRANCIS: The question of how to measure quality in a more complex
individualized way and the question of what information patients ought to have
in order to make choices among providers seem to me to be very different
questions. And as I looked at this I want to be sure they are kept separate
because — and I am not sure they are. Because when you say patients aren’t
using quality measures, they are going to health grades or something like that
and they aren’t doing it very often. Part of why they aren’t doing it is that
the choice set that patients have is not I want to try to pick the most
efficient, very best care deliver. It is here I am. If I have health insurance
with my employer provider insurance and a somewhat limited set of choices that
that gives me.

In addition I am working in an environment in which in many states what
might be the very most important information to me namely whether a particular
physician has been sanctioned for misconduct is not available.

I think it is terrific to say we need to have far more personalized
understandings of what quality measures are that aren’t population based, but I
wouldn’t confuse this with the question of what is the information that
patients need in their current context to make more rational choices about
which doctor or nurse practitioner to go see.

MR. LAND: Actually my comments are following up on Leslie’s comments. The
information is a little dated. When I worked for the state health department in
Missouri, we had legislation passed to develop consumer guides on health care
providers. And when we did the literature review at that time, we learned that
consumer guides actually are not used generally even to buy automobiles,
dishwashers or anything, and certainly used even less frequently to make
choices in terms of health care decisions.

Now it may have changed in the last 6 or 7 years. I don’t know. With the
availability of Google and so forth it might be different. I don’t know what
the literature says now, but that was certainly the case at that time. I doubt
that it has changed much in terms of health care decisions as has already been
mentioned.

I guess I am raising the same kind of question that Leslie was mentioning.
What are the expectations if we are going to go in this direction for
patient-specific performance measures? Is it for choice or is it for individual
relationships with their physician? And if it is for choice, we just may be
cautious that our expectations — maybe they will be met in this new
environment of where we are going with health care. I don’t know. I just wonder
if we are setting high expectations that there is no evidence to date that
information is driving decisions by consumers.

DR. MIDDLETON: Just a quick thought maybe on these two comments. I think for
sure there is a comingling of effects between how patients choose which
providers to go to or which institutions to use or networks or even health care
plans and that has something to do with convenience and access and my brother
went there and he liked it, et cetera, but it is not completely distinct from,
orthogonal to how good is the Brigham at labor and delivery. Or how good is
this doctor more specifically with patients like me? And somehow we need to
address both of these very important and distinct issues, but we need to find
out how to do both in a way that is really patient driven and meets the
patient’s expectations both for choice as well as ongoing care assessment or
quality management. I accept the point. I just don’t think they are completely
distinct.

DR. FRANCIS: I don’t think they are completely distinct. I just want to make
sure that our recommendation that is about an answer to one question isn’t
taken to be a recommendation that is an answer to another question.

DR. TANG: Can I respond as well? I think I — listening to the comments that
we may have confused you by saying that need to differentiate the individual
care measure. The measure is used to deliver individual care versus the
population measure. I think what we are saying is we need to be treating
individuals with an individualized care plan. It is not the same thing as being
able to relate all that to population measures. One way was this statistical
distribution that I mentioned. Another way and this was stimulated by comments
Eva Powell made is wanting to know not the risk adjusted score for somebody
because I am much rather concerned about my risk population.

It is ironic. Maybe instead of reporting risk adjusted score which
essentially makes everybody migrate toward the mean, maybe you need to publish
stratified scores so that a patient, an individual can relate to the strata
that they belong to. That is one way of making the same data and making it
something I as an individual can relate to and that is more of where we are
headed from a population point of view than saying how are we going to report
your performance against personalized goal for each individual. Was that
somewhat helpful? See what I am saying?

MS. GREENBERG: Well then also maybe you don’t want to do as well as that
group you happen to be in. We have to do as well as the other group.

DR. TANG: But you can decide.

MS. GREENBERG: But you can see.

DR. TANG: Right now you can’t see any of that. That was part of the point
that came out.

DR. CARR: My list goes Mike, Bill, Sallie, me, Jorge, Larry, Marjorie.

DR. FITZMAURICE: Recommendation one is shift the focus of measurement and
measurement development and activities. The question I have is — by the way, I
think this has been a tough area and that you really — a good job at laying it
out. But I have a question with recommendation one. How do you do this? What
secretary action is required? You are addressing the secretary.

The second one, develop and improve measures of quality cost value that are
patient focused and assess the interactions of the patient. I wouldn’t want us
to lose a focus on how about the outcomes of the patient. Does the patient get
better faster and can do things better?

Thirdly, regulators certifying organizations and payors should be actively
involved. Find out how the secretary can do that. Invite him to the table and
have them hold hands. But to ensure that they meet their goals. Suppose one
goal is to maximize the number of patients that are seen and get better.
Another goal is to maximize (?)31:51 from insuring them. Maybe they don’t all
meet their goals.

Tell us what the secretary should do and how it should be done. Tell us how
should quality measures be changed and who should do it. Now maybe some of it
is research.

DR. SCANLON: I had a similar reaction to Mike’s in terms of what is really
actionable here. And (?)32:23 was recommendation one. To be honest patient
centric — I had many ideas or definitions floating through my head. I got a
new one today when you defined it and I think therefore it is very important
that we actually be explicit about what we mean. I might have called it risk
adjustment that I don’t sort of use a measure that is not particular to an
individual, but I sort of adjust the measure for the individual. That is one
aspect of it.

I think that this issue of ideal data in terms of what people might want to
use has to be juxtaposed with what is realistically feasible data. And the
small sample problem is very real. If you want to start to extend the measures
beyond certain diseases, your small sample problem becomes even more acute. And
we are not talking about dealing with systems. For the foreseeable future we
are going to be dealing with individual physicians for a very large share of
our measures and so then what will that do to our small sample problem. If we
send this letter to the secretary, we have to warn the secretary about these
kinds of issues.

The second recommendation I feel like we are kicking the responsibility to
the secretary. Figure these things out. There are a lot of issues that maybe
came out of the hearing in terms of what is the pros and cons that need to be
considered here because these are not easily reconcilable issues.

And the third one I have a very similar reaction to Mike is where is the
secretary’s authority to do anything about this third area which has been
problematic. We have heard about this in multiple hearings over the years and
not just in this committee, but in other settings where providers talk about
the multiplicity of quality measures that are in some respects aiming at the
same thing but with tweaks that make it very difficult to be compliant.

That is a problem that is systematic of the fact that there isn’t any sort
of one entity and control here to specify these measures and the secretary
doesn’t have that authority. We are talking about private insurers making
requests. We are talking about ERISA plans making requests. Where is it that we
might look to sort of try to correct this situation and I think that is one of
the difficult things to think about?

DR. OVERHAGE: Can I have a response or a comment specifically?

DR. CARR: I think we have to give Sallie a chance. Hold that thought because
I think we are all on the same thing and Sallie has been waiting.

MS. MILAM: When I look at the recommendations, one and two are very consumer
focused. And recommendation three brings in other stakeholders. A consumer’s
view of the world would be very different than a payor. There is inherent
tension and I guess it is somewhere between often times and sometimes they
would view measurement very differently. And if this is the world of quality
measurement, these recommendations encompass how we think quality should be.
You have the payor in a very different position here. You have a payor making
sure that information is available to support the data measurements identified
by the consumer. I am wondering were payors involved in the hearing. Are they
supportive? And how did these three isolated recommendations address the
inherent tension and balance that needs to be in place so that everybody would
accept these measures?

DR. MIDDLETON: I will take a crack at it and ask Paul to chime in as well.
We did have payors on the fourth panel and their perspective was in a nutshell
basically they desperately want more data for more sensitive assessments and
quality and value particularly clinical data to combine with their readily
available administrative data to make more fine tuned assessments of value of
care rendered and services purchased.

On the tension front I think the tension is real and the goal is not to
ameliorate or eliminate the tension, but rather to make sure that the needs of
different stakeholders were all being — as opposed to ignoring one or the
other. It is acknowledging that there is a real tension, but can we find the
data that meet the consumer needs as well as the other stakeholders as we have
described.

MS. MILAM: But that is a much recommendation.

DR. CARR: Thank you, Sallie. Jorge.

DR. FERRER: I wanted to make a comment I guess from that experience of the
VA and this goes to the point of Blackford and Paul brought up with (?)37:30.
The VA within our medical home innovation construct when started looking at
better ways of improving the care of the VA. We have gone so far starting with
a simple diabetes registry. As that system gets sophisticated, it morphs into a
care management tool and it has become a total population tool that can span
almost any disease and incorporates the patient’s input which is critical. You
have to have the view of how is the patient expressing their outcome because as
a surgeon you could say well he didn’t have a surgical infection post 48 hours.
Patients might not really care about that because he wants to know if he has
gait deambulation and when can I — so people look at these things very
differently and if it is truly patient specific, you have to commit the system
to capture the patient’s view.

DR. MIDDLETON: Actually one of the most interesting presentations was on the
patient activation model. The lady from Oregon — it was terrific. It was clear
that this is one way we might need to actually stratify assessments because
patients who are nonactivated will have very different outcomes. We know that.
But also very different assessments of their own quality. It is a subtlety that
we did come forward.

DR. GREEN: I would like to observe mostly for Blackford and Paul in public
here that listening to the comments makes me think that recommendation one and
number three particularly are subject to reinterpretation and misinterpretation
of what the intent was. Having attended the committee and listened to the
conversation here has sort of gone off in another direction to some extent in
my opinion. I would like to come back to what we learned in the hearing and
make two suggestions about how we might lead into recommendation one and
recommendation three with an intention of demonstrating fidelity to the results
of the hearing.

Recommendation one really crystallized after the hearing discussion around
this notion I believe that the work so far on the development of quality
measures has largely been stimulated and driven by the needs and aspirations of
the payors and the purchasers and the provider groups that want to use quality
measures to advantage themselves in the market place.

Intent of recommendation one is to say the secretary you know what he is
right. We need to enlarge the quality measurement development focus in a way
that shifts it toward patients themselves so that the quality measures that are
developed advantage patients as oppose to advantaging a payor. I thought that
was one of the great insights from the work there. The discussion (?)40:49
about recommendation one sort of misses. That goes by that and we went
somewhere else. We need to step this us.

DR. FRANCIS: Could I say? As the primary determinant of their own health and
wellness that threw me off track there because if what it said was to support
the quality concerns that matter to patients, it would have read very
differently.

DR. TANG: That was there partly — it is the new beneficiary. I was going to
use the word target but that seemed to — so really it is not only the patient
as what happens to me and can I understand what happens to me, it is me as the
primary determinant. We did actually — those words were reflected in the
comments and discussion is how can I be — it is just like buying something.
You are an active role. You intend to use this information, et cetera. We still
can wordsmith it, but we want to keep that notion too.

DR. GREEN: If I can move to number three, there is a similar set up that
might or might not help in the construction of the letter. But recommendation
three I believe really came from us recognizing how much activity there is by
groups that have not been full borne participants in quality measurement
development to develop some sort of quality measure for their own use and this
included certifying organizations and others.

I thought this recommendation built on our prior acceptance that we want to
collect data once and use it often and that we don’t want different groups
creating different data elements that people have to collect in a different way
for a different use, but that in fact as you make the roadmap — remember we
were trying to define a way forward for the secretary to follow. Once you do
recommendation one and you shift in that direction, I thought recommendation
three’s primary purpose was to say you are going to have to create a space in
which other people other than the payors and the providers and Medicare are
defining what these measures are because there is a lot of people that are
doing it and that needs to be harmonized because it would enhance the
probability they are being used and used well and because they are so hard to
develop. If we got a handful of really good ones, wouldn’t that be fantastic
and then we could use them in six different arenas. And I just don’t think that
idea is captured here enough for the committee to grasp.

DR. MIDDLETON: The point is well taken about harmonizing because that did
come up.

DR. CARR: Marjorie then Marc then Bill.

MS. GREENBERG: Two sentences. First sentence. I actually thought to me —

PARTICIPANT: I am just going to interrupt for a second because we are not
wordsmithing PowerPoint, right?

MS. GREENBERG: No. Two sentences from me. I had told Justine I had one
sentence. I now have two sentences. The most interesting — just maybe it needs
more development. I think what Larry said just reminded me of it and triggered
it. The most interesting sentence I saw and I don’t know if it was in the
PowerPoints or the actual draft letter, but what was that clinicians use
different quality measures than the ones they have to report and that that
represents a problem. Some of it you can understand, but that was very
compelling to me.

My other sentence is that I am not quite sure whether it fits in as a fourth
recommendation or a fits into the other three, but these recommendations just
from the discussions we have had cry for a recommendation that research needs
to be conducted in this area. It is not just a question obviously of creating
or developing different measures. It seems that there is a lot we don’t know
about measures that would be more meaningful to patients that would take into
account patient’s issues, but also be scientifically accurate. Patients don’t
always want the best thing for themselves and I am among them.

I think that is what I have learned from our letter at the last meeting
which I don’t want to dwell on, but sometimes what we really need is more
research and that is actionable whether it be through AHRQ or NIH or I don’t
know what, but that is actionable by the secretary I think if that we do need
that and it sounds to me like we do.

DR. CARR: Thank you, Marjorie. Now I have Marc, Bill, Walter, and Leslie. We
are planning to close this at 2:30. Marc.

DR. OVERHAGE: Just a brief comment on Bill’s point. I think the secretary
actually has pretty powerful levers to help influence the direction the quality
measures go through what CMS does with Medicare and Medicaid as well as
whatever influence they may have with DoD, VA and OPM.

The other comment — I suspect Paul and Blackford have this in here and it
is just buried in code, but I would like to know where to look for it is this
notion that and I think it is probably in this first recommendation, but maybe
as we go forward stands to be called out more is this ongoing challenge of we
tend to measure things that we can measure. We tend to focus on things that
rise to the top for various reasons that systematic sort of thought about. What
are the five important things to do? And I say five explicitly. That may not be
the right number but it is not 500 because trying to change the system in a
system this way. You sort of micro-optimize it. If you have 500 measures for
those and you don’t get the system better and I don’t quite know how to capture
that and I suspect some of that don’t look under the light post is in this
first one. Look where it is important to patients and stakeholders but also
wanted to capture that notion of I think there is a risk of too much breadth if
we really want to make an impact.

DR. SCANLON: This relates both to what Marc just said and Larry. I think
that I believe Medicare is a very important factor in terms of the development
of quality measures. First of all, the Hospital Quality Initiative which there
is real money attached to and then the PQRI. Medicare is not motivated by
market share. It does not have to worry about market share. If given the right
guidance in terms of what the right measures are, I think the program will
respond and is the leverage that Marc indicates that the secretary has.

On top of that within the Affordable Care Act there are explicit provisions
for you have to come up with pay for performance or value-based purchasings or
the initiatives. Tying what we recommend to that I think makes it much more
currently relevant, but it has to be done in the context of what is also
currently feasible.

The concern is and the part here — I am observing what has been happening
with Medicare is that it is not payor driven as much as it has been provider
driven. There have been people who are very supportive of physician pay for
performance and we are incredibly disappointed after PQRI was enacted because
they saw this scramble by every specialty to get some measure in there so that
they could possibly qualify for their share of the pie. These are not things
that are necessarily patient oriented. Is that antibiotic before surgery really
that sort of critical? There has been a lot of evidence that says no.

It is this issue of the right measures and what the process is that is going
to get us the right measures is not totally clear because if you are a Medicare
program you have to involve the providers. They are the professionals. They
have the knowledge. You can’t viably in this country say this is what we are
going to do. We know medicine better than everybody else.

DR. SUAREZ: Back in the early ‘90s when I was in Minnesota we started
developing all these concepts of report cards for health plans back in those
days and trying to understand it. There were two important concepts that I
always remember. One was there is a very distinct and separate issue about
quality measurement for improvement versus quality measurement for
accountability. We always had that issue of what is it that gets reported
outside to measure for accountability what we are doing, that is providers,
versus how and what we measure internally for purposes of improvement, for
purposes of patient safety, for purposes of a lot of reasons including not less
payment and reimbursement of providers. Performance as in employee performance
kind of a thing.

I think it is going to be and it has been highlighted, but it will be
helpful to have that preamble discussion about the importance of distinguishing
quality measurement or purposes of accountability versus improvement.

It always come to me back when we are talking about this because we have to
do it back then and I think it is part of what the research could provide. We
have heard across the discussion different aspects of measurements. As a
patient, I want to know about the quality of providers and of payors. As a
payor, I want to know about the performance of providers. As government, I want
to know about everything.

When you are creating matrix of patient, provider, payor, accreditation, and
government and cross it with the same kind of angle, you begin to identify who
is looking for what. What are the needs for quality measurement and quality
data from different perspectives? What is it that health plans want about
providers and what is it that patients want about providers or health plans?

This has been done and documented probably, but there is new evidence about
new needs, new expectations much more into the point that I think is in this
particular which is I think a very important one is consumers decide tailored
information relevant to their personal health care needs. Now are not sort of
the overall measures of quality on a performance or a report card of a health
plan that doesn’t relate to me because that is just too general. I won’t be
able to relate it. It is much more personalized, tailored. I think that is
where the research opportunity comes in trying to understand and identify the
new needs, the emerging needs for quality measurement at these different
points. Creating that kind of a matrix that helps understand so the framework
around that is looking for quality information and what kind of quality
information is being looked at will help.

DR. FRANCIS: The phrase the primary determinant of their own health and
wellness is crucially ambiguous as I understand it. One understanding of it is
that the patient has responsibilities for managing his or her health and the
information that a patient would need to have in order to participate actively
in that kind of management is one sort of information some of which we have,
some of which we don’t have now.

The second meaning of it is that what matters with respect to health or
wellness is going to be different for different patients. That is the point
Jorge made. It may matter to me how much mobility I have and I might rate my
wellness differently depending on mobility.

It may matter to me whether I am treated abruptly or not because I might
prefer a world in which I am treated nicely to a world in which I live longer.
There are people who have. That is silly but it is true.

Be careful when you frame that about whether — what you are really meaning
to do is to say measures of health are different for different people or to say
that what we are trying to do is reconstruct quality so that we allow for much
more patient responsibility for health.

DR. CARR: Thank you. Thank you for pulling that summary together and the
work that you have done in a short amount of time. I think it really afforded a
great opportunity for discussion.

I wanted to just take a few minutes to talk about two things. One is how we
do our work and then the other is just to restate the charge for the work
groups this afternoon. We have had occasion to really look at what works and
what doesn’t in our various processes and we talked a bit about it yesterday
and I will try to hit the high points. One is as you are a planning a hearing,
the pre-work is important in terms of identifying who are the stakeholders, who
are you having, all of that so that you can bring it to the full committee. You
want to get some clarity. The subcommittee makes the plan, comes to the full
committee. We will hear back tomorrow if there is some things in the works.
That is an opportunity for someone else in the group to say don’t forget to
invite this person or that person or include this stakeholder. That is very
important.

Second, at the hearings as we said we will have the transcripts and the
PowerPoints and participation in the hearing. Ideally all the subcommittee
members can be at the hearing, but if they can’t a couple of things. Someone
else can attend in their place or they can read the transcript, but we want to
make sure that everybody is on the same page about the hearing.

After the hearing, the development. We have talked about trying to pull
together these talking points so that we can have a meaningful discussion
around it followed by the letter with the recommendations.

As the letter goes around, we talked yesterday about the challenges of
version control and keeping track of comments. We want to make sure that we
have a clear record of all of the comments and that they have been addressed
when we are discussing it. Sometimes two people might say something that looks
the same but it has very different meaning to them. Marjorie did a great job
with the privacy letter of simply cataloguing every single comment and everyone
was addressed and similarly with version control. We are going to look to staff
to give us some help on version control so that we are all working on the same
— we are correcting the same version, not the one that came before.

Then when the work product is complete from the point of view of the
subcommittee, it comes to the executive committee and that is an opportunity to
identify any rough spots that may need more work, may need some assistance, and
to determine whether it is ready to go to the full committee. When it gets to
the full committee, they should have heard about it once at the time of the
planning, the second time with the preview through the PowerPoint and we should
be pretty much informed and have all the issues identified at that time.

The other thing that we talked about is having the opportunity to have some
scheduled NCVHS time and staff is going to work to come up with probably a
Friday afternoon a month that is NCVHS time. If you need to call your
subcommittee together at that time, everybody will have blocked out more than
one group needs it. It is probably possible as well. If we don’t need it, we
don’t use it. But I think we have found that our schedules have been so
challenging lately, but it delays the timeline.

Were there any other thoughts about our process or suggestions? Marjorie.

MS. GREENBERG: I may have phased out here, but did you mention that our
processes are for letters to go to the exec after the subcommittee has signed
off on them to go to the executive subcommittee.

DR. CARR: I did.

MS. GREENBERG: Also, we are going to try to do less and really focus on the
recommendations and not wordsmith the other stuff.

DR. CARR: True. We don’t want to do wordsmithing but as we talked about also
the context around the recommendations is also important for everyone to see. I
think it is a tension one way or the other. But I think if you follow this
process and adhere to it and I am appreciative to Paul and Blackford because we
talked about this process today and now this is what we are adhering to. We
won’t get to a letter tomorrow although we have time allocated tomorrow to talk
more about this letter. It might be helpful to come back having heard what you
heard today with here is the direction we are going in so that we are on the
same page.

DR. TANG: That wouldn’t go in the process though. I think there is value in
the process you laid out for the subcommittee to work on some things —

DR. CARR: No, we wouldn’t talk about a letter tomorrow, but I am offering
you an opportunity to touch bases with the committee once more tomorrow. You
have a subcommittee meeting this afternoon from 4 to 5. I will leave it to you.
If you would like to use your time not for the letter but for further
discussion, we can to do that. If you are all set, that is okay too, but the
idea being that we would all be up to speed. It sounded like there is enough
question about the direction that I would encourage you to use the time
tomorrow to update the committee.

MS. GREENBERG: Just from the point of view of version control and all of
this which is challenging to all of us in all of our realms I am sure, but we
have established the SharePoint and some people find it useful. Some people
don’t. I think we can do a better job pushing it out to people, but also we
might consider saying that when a subcommittee will say is commenting on a
particular document. The version that is being — you know well has been sent
around by email. I know we get so many emails. In addition to maybe getting it
by email the version being commented on we could post on SharePoint and even
staff could do that. At least you know everyone is commenting on the same
version because I think that often is — we could sort of edge you into the
SharePoint and see where it helps and where it doesn’t, not as an alternative,
but as a supplement maybe.

DR. CARR: Just the active copy available in SharePoint for anybody who
wanted to check that.

DR. WARREN: Do we all get SharePoint accounts? We have them and then we — I
know I lost mine.

DR. CARR: You lost yours? Okay. We will look into that.

DR. TANG: Just an administrative question on SharePoint. Do you have to then
detect something out and then it gets locked or how does that help with version
control?

DR. CARR: No, I think what Marjorie was saying is that if we just keep
posting the most recent one when you go to do your work, you could check and
say am I working on the right version.

DR. TANG: The same problem with email.

MS. GREENBERG: You would have gotten it by email if you can go and check to
make sure if you are working on the right version. Something to think about.

DR. CARR: Hold that thought about SharePoint. Maybe Blackford or frequent
users can give us some guidance on that. I think that as you are planning your
work, plan out when your calls are, when your drafts are going out, when they
are due back and maybe just at least adhering to those dates.

I don’t want to be overly prescriptive, but obviously we needed to come back
after the last meeting with some clarity on processes and we will try this and
see how it goes and thank you, everybody, for what you have done so far.

The rest of the afternoon is to develop what you heard this morning. I want
to thank everybody for their very rich contributions to the discussion today. I
think it was helpful for the work done yesterday to set a platform to set a
direction, but really the development today was terrific and please try to
recapture what your thoughts were at that meeting and come back with a plan
that is exciting and actionable and meaningful.

MS. JACKSON: Where are people this afternoon for logistics? It works out I
think pretty fortuitously that the populations and the quality subcommittees
will be in the same room. We are going to start with populations. The original
plan was for the populations to be here and for privacy to be in another room.
But from the discussion earlier you were talking about having populations and
privacy talk a bit before —

PARTICIPANT: We are going to start by meeting together.

MS. JACKSON: By meeting together. So we can use this same room to start now
for the two subcommittees, populations and privacy, meet as long as you want
for 20 to 30 minutes. And then privacy when they finish will go up to the third
floor. Room 3015 is the break out room for the concurrent session here. And
then at 4 o’clock then quality would come on into this room. We will use this
as the base of operation room.

Standards tomorrow. What is the plan for Standards? Will they be in this
room? Standards will be in this room tomorrow morning. For this evening we can
gather about 6:15 or so for those of you going to the dinner we will be in the
lobby. For those of you who are staying here. Otherwise we will just meet you
over at the restaurant for the 6:30 seating.

DR. SUAREZ: For those on the phone they just send an email here. If they are
meeting, do they dial a different number to go to a —

MS. JACKSON: No. The numbers were aligned. Populations and Quality — that
is a question about Privacy. Privacy was meeting with its own number. When you
get back at 3 o’clock then privacy will plug in.

(Whereupon, at 2:40 pm, the Full Committee adjourned.)