Department of Health and Human Services

National Committee on Vital and Health Statistics

February 21, 2014

Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, D.C. 20024

Proceedings by:
CASET Associates, Ltd.
caset@caset.net

TABLE OF CONTENTS

P R O C E E D I N G S (9:03 a.m.)

Agenda Item: Welcome

DR. GREEN: Good morning. Welcome back to day two of the February meeting of the National Committee on Vital and Health Statistics. I am somewhat relieved to see the Committee members return for another round. I think we have
approximately the right size, in terms of time and opportunity for the work to be done between now and noon. We will find out. Let’s introduce ourselves and declare conflicts of interest.

(Intro around table)

DR. GREEN: Let’s talk about the structure of the agenda for the morning just briefly. Mr. Rothwell is not going to be able to be here. We won’t have that NCHS update. Are there any other adjustments to the agenda that are needed from any of the subcommittee meetings and discussions? Is there anything further?

DR. CARR: There was the banished Bruce.

DR. COHEN: I am always ready.

DR. GREEN: Okay. I think we will move right to the potential action item here about a letter from the Working Group on Data Access and Use. I don’t know what time you decided to look at your email last night, but it was there pretty quickly – pretty soon after our meeting. I believe it got posted.

DR. COHEN: Am I going to do the Data Council now or later?

DR. GREEN: You are going to do the Data Council now. Thank you very much.
While the rest of us talk about the letter, Bruce will give his presentation. I
cannot believe the amount of abuse this man has taken.

(Laughter)

DR. COHEN: This gives everybody a chance to read Justine’s letter. I will
talk very slowly.

(Laughter)

DR. COHEN: It was a wonderful experience presenting where we are at with the Data Council. I am not going to go through the slides in detail, but I will just briefly run through them so you see what the content is. I think it is a wonderful – essentially, I built this on slides that have been compiled over the years from a variety of our reports. It is a great, I think, base slide set as we communicate with a variety of other groups. Please feel free to borrow from this slide deck liberally. It is a nice place to start.

I will just run through these. I really want to focus my comments on the
conversations we had with the Data Council because that is where the action is
at.

I talked a little bit about NCVHS. Most folks were slightly familiar with
what we do. I will come back to this point. I talked about sort of our vision
for shaping health statistics and the really important themes of data
liberation, community awareness, and integrating our activities. I talked about
what a learning health system is and what some of our ongoing work is, first
around using local data and reports from some of our fantastic work on learning
health systems and the feedback we got in a variety of settings from community
groups.

I don’t know whether – we have done so many different things. One of
the pieces that I went back to is something that Tamara did for us. Really this
online feedback tool, I go back to some of these results and they are really
very instructive. We had almost 100 community organizations give us feedback on
what some of the key issues are for them.

I briefly went through some of those findings and some of the themes and
learnings from that online feedback mechanism. This sort of emerged from some
of the work and some of the fantastic writing that Susan Kanaan did pulling
together a variety of our learning system reports.

I talked a little bit about how some of the recommendations we made based on
that First Learning System report. Then I discussed the Community Roundtable. I
think it reminded me what a powerful model the roundtable was of bringing
together different groups of folks with different perspectives. I think this is
a model that hopefully we will be able to repeat in other venues. I talked a
little bit about the additional learning we had from that and the reports and
what activities evolved from that and from the new data workgroup as well.

I also reminded the agencies about I think the seminal work that, you know,
we have done in data stewardship and privacy, building up to the letter and
some of the recommendations that we have made to the Secretary.

Then I talked a little bit about Convergence Data, Trust, and
Infrastructure. Again, it was great for me to review some of the work that we
had done before. I think this is another really powerful slide that puts
together a lot of our activities.

I began discussing with them some of the work that we hope to do
investigating reinvigorating the federal role. Remember, these are all federal
agencies, who we would target, actually, in terms of our communication about
how to actually and practically do this. Then I talked about really aligning
our activities with what the Data Council does.

It was – I went through the slides quickly, but the value of this was I
guess in three areas that I will summarize for us. First of all, the shared
themes. All of the agencies are very interested in promoting data liberation.
The second shared theme is the growing focus on responsiveness to communities
and really better understanding target audiences for our health data releases.
I got a sense that agencies are trying to break out of their traditional molds
to really deliver messages in better ways. Third, the need from members of the
Data Council to sort of do what we are doing, integrating data release with
concerns about privacy and providing support.

We have a lot of shared themes. My takeaways from the feedback we got are
that the notion of communities as a learning system really resonated with the
Data Council agency members. This is not a framework they have used in their
work, but they were certainly interested in learning more about it.

My second takeaway was that a lot of the folks in the agencies know of the
National Committee, but had no idea about the breadth and depth of what we have
done and what we are planning to do. They were all, I think, excited and
fascinated by the scope of our activities. It made me realize that we need to
do a lot more outreach with all of the agencies in HHS who are connected to our
work.

They also expressed a huge interest in granularity and geography. It was
serendipitous that preceding my talk was a talk on the Area Resources File,
which is a phenomenal resource that is being reworked and updated to provide
county level information, mainly for health services research and
socio-demographic background. But this is certainly – the whole Data
Council meeting focused on issues of geography.

The action steps for us – I think we need to figure out how to
collaborate more closely with the Data Council and we might want to consider at
some point holding joint workshops with the Data Council around a variety of
issues, whether it is focused on granularity or really focusing on the federal
role and responsibility to provide technical support. These are the people and
target agencies that the responsibility would fall on. We really need to
integrate our activities with them.

It was a really helpful exchange. I hope we find an ongoing mechanism to
communicate more regularly with the Data Council.

There are several of you – obviously, Jim was there. Debbie was there.
Lily was there. Susan was there. If you guys have any thoughts or comments?

MS. JACKSON: Hi. Again, the excitement was almost palpable as Bruce was
presenting. Things that had percolated in people’s minds just seemed to
galvanize like, aha, that’s it, including participants who came from outside of
other groups and agencies and foundations.

The National Quality Forum had a representative, Nancy Wilson, who was so
taken by the material that they had a workgroup meeting I think the very next
day or within a couple of days that they invited Bruce to attend to provide
input on this presentation and just to kind of see where collaboration was. He
was not available. I mentioned I would be glad to just kind of come in and take
notes. Before I knew it, I was in the program.

They wanted that material so richly they included me to the point that I
provided the same information to that group. I am now on their mailing list for
future and subsequent meetings. That is how rich this material was and how much
it resonated to groups. Again, I reinforce Bruce’s comment and others. Marjorie
has always been trying to say how are we getting our material out there to
targeted audiences who are really waiting to hear this material from the
Committee.

MR. SCANLON: I think, too, there was a lot of interest. As Bruce said, his
presentation was preceded by one of the data resources that actually deals with
local and regional data, the Area Resource File. I think there was a lot of
interest. I think it sort of depends – sort of the perspective depends on
the agency. I think the service agencies and CDC and others – I think ODPHP,
for example, there is always the view among their customers as the local area.
Ultimately, grants and others – change occurs at the local level even
though the grants are mostly to the state. There is great interest.

The statistics agencies, they are not sure what exactly their role is in
that level data because they are producing national data. I have to say CMS
probably does more – not necessarily more than anybody, but their data is
often more applicable to local applications and use than some of the national
data as well. I think everybody is sort of looking for – I think each
agency had kind of a different – they were sort of looking at where did
this fit in terms of their own approaches.

I think there was some justified skepticism in the idea of – I think
Jim brought up this point yesterday – that you really have to understand
what the need is. We have had too many instances where we built something with
perfect design principles and nobody came. We have taken down a lot of those
websites and tools. We have to sort of look at before we take much action not
in not making data available, but in terms of carrying it forward, what exactly
– what would be useful and what wouldn’t? Resources are becoming scarcer.
You don’t want to make big mistakes and then you get 12 visits to the website a
year.

There was some discussion of the history of our sort of technical assistance
in this area. NCHS used to have a program. Other agencies had programs through
the states that sometimes to grantees in terms of data development and
applications. I think the other thing was if you had to do one thing, get a
good analyst, don’t build another website. Get a good analyst and let the
analyst find – they will always find the data with the good analyst.

I think as Bruce said there was interest in moving forward I would say, but
in a sophisticated and nuanced way so that we are not just going to start
throwing up technical assistance websites or big contracts or anything like
that. I think those days are over, at least for now. We really have to have
good understanding of what it is we hope to accomplish, maybe test it out.

There is sort of a necessary aspect of this and then a sufficient aspect of
this. The necessary part is to continue to get the data out through
healthdata.gov and other means. The sufficient part of it in community data is
who is at the other end and what really do they need, which is very tough. This
is sort of one side looking at what we think everybody wants. There is no
market test, as far as we can tell, other than visits to the website or uses or
training courses. Everyone takes the money, obviously. That is not really a
market test.

At any rate, I think there was great enthusiasm. There was interest in some
joint activities, maybe a summit, maybe a workshop, maybe looking back at sort
of models for technical assistance. Then I think if we want – we used to
have – I think we could have more reports to the Data Council. It has to
be over a product or a set of recommendations. It is hard to – just like
you, it is hard to pull them together. I think going forward – but I think
there was definitely interest in some – perhaps a joint summit or a joint
workshop where we would hopefully take this to the next level in terms of what
is useful and maybe pilot something.

DR. WALKER: Thank you. Great presentation.

DR. GREEN: We are going to put it on the next agenda three times.

DR. WALKER: A straight thought, having designed some websites and tried to
use many, I regard a website as a good place to hide stuff.

(Laughter)

DR. WALKER: Which is a way of saying one of the things I think we could try
to think about is how would we push this stuff effectively? Talking with Chris
yesterday, there are some thousand community organizers of different sorts out
in communities around the country doing different kind of organization, but all
or at least many of which involve some health care aspects.

To the extent that it is possible, if we could identify people like that who
would be kind of vectors for this sort of thing and at least a reasonable guess
at who would be a primary audience for this sort of information, that would
– it would do a couple of things. First of all, it would just mean that
our communications worked better. The second thing is that then we could have a
kind of market test.

If we could get 400 of them and be able to say to them this is what we are
thinking about, does that make sense to you? Would that help you or not? I just
think if we could try to figure out a way to get at some of those people –
it can be pretty cheap. Email distribution list. Survey questionnaires that
they answer or they don’t and we could the responses. I think that would really
be worth thinking about.

DR. GREEN: Let’s run the people whose tents are up now. Remember what you
are saying for our discussion at 11:15, after the break, about future work.

DR. BLEWETT: I wonder if those – is your presentation accessible
somewhere? I think it would be – I wanted to stay on a few of those slides
for a minute. I can look at it offline. That would be great.

DR. COHEN: It is in the e-book. Is it up on sharepoint site, too?

DR. GREEN: Don’t forget we have a new, redesigned website that is looking
good.

DR. WALKER: Could you push it to us by any chance in electronic form?

DR. COHEN: No additional price. Lynn, were there particular slides you
wanted to look at here?

DR. BLEWETT: No. Is there a list, also, of the Data Council members? That
would be helpful. Too.

MR. SCANLON: Yes. Just briefly, the Data Council has a senior representative
from each agency and the major staff offices in HHS – CDC, FDA, NIH. The
NCHS director is a member, a special member. We have a Privacy advisor as well.
All of the major agencies are there. It is co-chaired by ASPE and for a while
AHRQ has been a co-chair. It meets monthly.

There is a lot of work in between. As you know, the councils are – it
is sort of the formal way and the formal channel. It creates a network of
consultants and ways to deal with issues. Every year, among various things, but
every year the Data Council is asked to review all of the investments, largely
statistical and data system investments from across all of the agencies as part
of a budget process. We kind of do a pretty deep dive there to see what.

The other thing is a lot of the surveys and data are related. We don’t want
someone taking unilateral action here and then other things fall apart. It
advises the Secretary. Normally, it is the discussion. Normally, agencies
comply or follow what the Data Council advises. Every now and then, we have to
push it through for a Secretarial decision. Normally, people – certainly
the budget folks are not going to support something that the Data Council
doesn’t support.

We could think of ways to have more presentations or discussions and kind of
things like that. We even had, as I remember at some point, the chairman or
monitor from the NCVHS coming to some of the Data Council meetings. It was a
little problem with the lawyers because it is not a FACA. You discuss things
there that are pre-decisional and internal. They worry someone will say oh,
well, if you are inviting inside members. I think there is a way to deal with
that.

DR. GREEN: There is a word for you, pre-decisional.

DR. COHEN: Could we invite Data Council members to our meetings?

MR. SCANLON: Absolutely. There is a Data Council website. It is on the ASPE
website. You will see. If you Google HHS Data Council, you will see it.

DR. MAYS: One of the things, in terms of seeing the excitement that went on
there is to see if those would be agencies where, again, we could get staff
that actually would work with us. There are a couple of those agencies that
have very deep reaches into the community. I think it would really facilitate
sometimes our ability to be able to get an answer. Again, I think we have
talked about HRSA and SAMHSA.

MR. SCANLON: The service agencies usually.

DR. MAYS: Yes. I think if there were ones there and you can remember, you or
Debbie, maybe this is a good time to follow up now where they saw the relevance
of why it is they would want to help to staff the pot.

The other thing, in terms of Jim’s comment, is that one of the largest
groups that reaches into community very easily is called The Campus Community
Partnership. They are very interested in this. That is what I brought up
yesterday. They have research agreements. They have MUAs, MOAs. They would be
very interested in kind of participating in this, as would, for example, you
could go to the CTSAs, who also – I forget. How many CTSAs are there,
Larry?

DR. GREEN: Sixty.

DR. MAYS: That is community groups who are very interested in getting
research data. The third one would be in APHA, there is a community health
council group. I think if you took those three, you would have very deep reach.

DR. SCANLON: My own view is we will learn a lot from the non-health –
from the social science stuff and the American Public Data Users Association
and others like that. I think Chris knows a group as well. This all, remember,
was the vision of open data and data liberation to reach these groups
specifically and healthdata.gov. The idea – healthdata.gov is not for
consumers. Healthdata.gov is more for the developers and for the
intermediaries, who can take the data. I think that overall concept that we are
raising was really to have those groups, the customers and others, have a say
and determine what is useful and what is not and then make it easy to get.

We still don’t have a good – we have heard from communities. We need
somebody to leverage – to sort of take the easy road. If there are folks
who do this and we are not experts on this. Datapalooza is supposed to do some
of this. There are pieces here, but we are not quite there yet. We are kind of
searching for a model. Some of it is just sort of trying things out. I think
that is the view that people have that if you democratize the data and make it
easy to get, at least don’t make it hard to get and make the information, the
availability manageable. Have folks know about it.

Particularly the communities are the ones who could take the data. Data.gov
is not for an individual. If you are not a researcher, you will not know what
to – except for some things where there are lists of grantees and so on.
It is not really quantitative. It is qualitative data.

There are intermediaries, for lack of any other term. They are the ones that
I think we could leverage if we could get to them. If we have to reach out to
3,000 counties or 350 million people and every organization, then that is
doomed to fail. You can’t possibly please everybody. You want to sort of take
the path where people are doing this already.

DR. FULCHER: Our work with communities has really evolved over the years.
What we have seen is that health data is just one facet of what we are working
at with United Ways or with YMCAs or other non-profits that are using health
related data to inform – for childhood obesity or looking at healthy eating and
active living. There is a whole spectrum of data that is actually being used.

I think with what we are doing with Community Commons, it is not about
putting out more websites. I think we all agree that what we are doing is we
are further fracturing ourselves and not helping people living in communities
get access to what they need. Community Commons is more around alignment, in
terms of navigation so different funders or like foundations and agencies have
that presence on the Commons. From the community perspective, when funding ends
as a grantee, they still get access to the tools, the public data, et cetera.

I think that is the main thing. Health is just one facet of what we are
involved in with communities. They don’t look at it by sector. They look at it
more holistically.

DR. WHITE: I apologize that I did not get a chance to introduce myself
earlier. I simply wanted to underscore a point that was made two speakers ago.
This is about getting staff time for folks at HHS to work with NCVHS. I would
like to encourage you all, if you are thinking about doing outreach, to make
outreach to specific agency leaders. You mentioned SAMHSA. You mentioned HRSA.
I will add AHRQ in there. We have a new director.

I am hoping those folks understand the importance of staff time to be able
to work with NCVHS. It is going to be critical to your ability to get, whether
it is my time or other folks’ time, to be able to engage. Not just reaching out
to staff at the agencies, but also to leadership is going to be really
important if that is what you want.

DR. TANG: Yesterday, Jim talked about the Field of Dreams. If you build it,
they don’t actually show up. You sort of said that again today with the
website. I am wondering if the metaphor we need is more like a traveling
salesman. I am going to put that metaphor aside, but it is descriptive. Other
models that are close to that is the REC, of course, and then the promotoras,
which is a way of getting people out into the field.

We know that we can’t reach each individual potential user, but I don’t know
that the users know that some of the problems they have to solve can be solved
with data or at least be aided by data. In a sense, they don’t even necessarily
know that they need to connect with a data intermediary. We have a twice
removed problem, which is why the traveling salesman person sense of how do we
reach them, how can we help them do the needs assessment, and then pull out our
bag of recipes or tool kits so that we open up their eyes to some of the things
that could be done, but first know what the problem is to solve.

It goes back to our rats problem from Rochester. If we uncover – we
have to help them, I think, uncover the problem before we even have them
uncover the potential solution. In a sense, they pull in their datamatch.com in
their tool bag, but they do have to go out and help people recognize what they
are trying to find. That would be a different approach. Yes, it involves some
investment of monies, but I wonder if the ROI is really quite good on that.

Like you said, we spend a lot of time either with the data, themselves, the
analysis of the data, or the website. They are not quite coming yet, but maybe
we just spend a different kind of increment and try to pull them in. It is just
a different kind of education. I think it is a win-win, but it does take that
initial investment. Anyway, that is another approach.

MR. SCANLON: Our folks who – Tad Park and his disciples and others and
our folks here at HHS, who are promoting the data liberation, I think – the
history was when – for the first wave, the idea was to, whatever else we
were doing, in terms of data dissemination, the federal government should start
making these data available on the web in a machine readable form. Then the
idea was you liberate it and anyone can take – for better or worse, anyone can
take it and start doing applications.

Both the community data warehouse and healthdata.gov, they are really sort
of geared towards the developer or the application person. They are not
necessarily consumer websites. They had the idea, except it is more than just
the developer, the technology community. It is a public health community.

I am not sure everybody – I am a card carrying member of the APHA. I
don’t think everyone thinks of their local health department for these things.
There is not an obvious locus necessarily everywhere at the level that is at
the receiving end that could assist the community members.

I think there is sort of a gap in healthdata.gov model, which is not just
the developers, but other folks who could take the data. Where do you find
them?

DR. TANG: If we tweak it a little bit more so there are promotoras – so
they might be different. You have the teachers who go to the teacher convention
and discuss how do we deal with childhood obesity. All of a sudden you have
reached more people at once, but with someone who understands the power of data
and also understands the problem. It is sort of a mass customization, I guess.

DR. GREEN: So once again we are repeating our prior work that Susan Kanaan
captured so perfectly and that Bruce had as his last slide in that cartoon. The
guy is looking out and saying, just think, someday this will all be
infrastructure. The case is made. It is on the table. It is in the law of the
land in the ACA that we are missing a critical infrastructure to enable
communities to be learning systems for health.

The most successful model invented in the history of the human race was done
in the United States. It was called the Agricultural Extension Agency. The
Extension Agency is in the law. AHRQ followed up with it despite no
appropriation for it. They are working with 16 states right now to create the
traveling salesman, the promontory, the community health worker, new types of
people that community colleges are spinning off to help get this done on the
ground.

The model is known. The law is there. We are not doing it, except AHRQ is
trying. As nearly as I can determine, the federal role in this effort right now
is owned by AHRQ, where Jon White is from. They are having a meeting right now
– I mean right now in the Russell Senate Office Building on the third
floor with those 16 states, trying to figure out how could we move this system
forward in all states to enable not just the data transfer, but everything, the
redesign, the redesign of how your produce health.

I am going to stake this territory out personally, Joan. We have been
talking about it for three years. Someday maybe we will do something about it.
I love that quote in all the IOM Chasm stuff. I will paraphrase it. It is not
enough to know. You must do. We are on the scent here. The Data Council is on
the scent here. Everybody is saying we ought to do something like this. Don’t
forget that. We ought to do something like this.

DR. WALKER: The next model has also been developed in the United States.
There are massively online courses that have had hundreds of thousands of
enrollees. I don’t know if you read the thing, the Stanford artificial
intelligence course that the top 400 scores were not even in the United States
or on the Stanford campus. That is far more affordable. If it were me designing
systems, I would say that what we need to do is use that. We can’t afford
extension anymore. In any case, we ought to add that to it. That is a model
where we could educate thousands of people at zero adding incremental cost.

DR. GREEN: We will have fun adjudicating this and coming back to it again.
We are not going to let go of it. Something else needs to be done. Justine,
let’s partner up here and try something out. Let’s see if we can have this
letter off the table in 30 minutes.

DR. CARR: There will be no question and answer period. It will just be me.
Thanks very much for all of the input yesterday.

(Laughter)

Agenda Item: Action Item, Letter from the Workgroup on
Data Access and Use

DR. CARR: As you recall, yesterday we had three areas of focus: timeliness,
metadata, and granularity. Granularity, as you know, is now gone from the
letter for all of the reasons spoken about yesterday. I would say the intent of
the letter – we heard a lot of really good ideas that we might include,
but at the end of the day, the heading says Steps to Improve the Use and
Usability of HHS Data on Healthdata.gov. It is going to be very concrete and
just do these things. We will get that out of the way and continue with the
conversation. That is kind of where we are at the moment.

DR. COHEN: Justine, I actually have a concern about the heading. I think
health data – well, first of all, have we talked to the healthdata.gov
folks? If our focus is going to be on healthdata.gov, I think we really need to
process it with them.

Secondly, I think that scope, even though Jim suggested it as focus is a
little too narrow. I don’t want the Secretary to think that this letter is
about healthdata.gov alone. These recommendations, I think, really transcend
healthdata.gov. In fact, if you look at healthdata.gov, they probably do a
better job with metadata than virtually any other federal data source. If our
lead is metadata, which I think is a huge concern for most data, I think the
focus on healthdata.gov is somewhat limited.

DR. CARR: Duly noted. I share your concern about the breadth of this. Let’s
put an asterisk here, go through what the content of the letter is, and come
back to what should this say. Either we change the content or we change the
heading or we change both. Thank you.

I think this is now short enough that we can probably just walk through it
line by line. I do want to mention that yesterday I made a faux pas. I was
looking on my iPad at the ASPE website. Curiously, when they show a graph it
gets truncated. What looked to me like data that only went for four years,
truly went out to ten or eleven. A lot of lessons learned there.

Your point, though, about touching base with the healthdata.gov folks I
think is important. We don’t want to come forward naïve. We will see how
far we can go today.

DR. WALKER: Just quickly, Justine, if you can’t use it, it is not usable.
Who is going to be more sophisticated than you at this? We need to not discount
the difficulty you had using it.

DR. FRANCIS: I have another just quickie – why you put in both use and
usability, I am not sure what we mean by improving the use.

DR. CARR: These are all great points. We talked about that. Jim, in
particular, made that point that we need to specifically talk about that.
Whether we carry that through is another reason to say did we do what we said
we were going to do? Should we come back to it?

DR. WALKER: Can I clarify the unclarity that I created? The best evidence
and I think the only empirical model of our theory of technology adoption finds
that two things determine technology use – usability and usefulness. What
I meant is I think we ought to just talk about usability in this one and
usefulness in the next one.

DR. SUAREZ: At the risk of using another U word, I do think that – I agree.
I think usefulness and usability are the critical concepts. I do believe that
this letter improves the usefulness, not just the usability. I didn’t want to
miss that part.

DR. CARR: We had it as utility.

DR. SUAREZ: Well, utility is a way of describing usefulness. I do think that
is important to highlight those two points. I don’t know if we are really
trying to improve or increase or enhance the use, itself.

DR. CARR: I think it is the utility. We started out – the first version
one was utility. These are all excellent points. Let’s read the letter and
figure out what we said and either change the body of the letter or change the
heading, but we have to go through it.

DR. FULCHER: I didn’t hear you at the very beginning. You said there were
two things left out?

DR. CARR: We took out granularity.

DR. FULCHER: Did you explain why or you are going to get into that later? I
just didn’t hear.

DR. CARR: Were you here yesterday? I think over the course of the
discussion, the point was well made that granularity – one of these things
is not like the others. The other two are very straight forward. Make things
more timely. Make things more clear. Granularity brings with it a lot of
policy, a lot of analytics, and a broader discussion about protection.
Therefore, since we have a number of efforts underway to talk about protection,
it was thought in the interest of moving this forward in 30 minutes, we would
be best served by taking that out.

I did hear from the workgroup members, who said you are missing part of the
letter. This is a decision that we are making. We can either spend six months
to do three things or we can do two things today and take the next couple of
months to work on the other. Let me just stop there. Are we all in agreement
with that? I will bring this back to the workgroup.

MR. SCANLON: We could look at it, but this was meant to be the first
installment on utility.

DR. WHITE: Justine since I am not there, would you let me know when it is a
good time to ask you about USHIK?

DR. CARR: So are you making a recommendation?

DR. WHITE: I might. I am not there in the room. It sounds like you want to
go through the letter. Please go through the letter. You tell me when the right
part is to talk about metadata recommendations and let me ask you about USHIK.

DR. CARR: We will come back to that, Jon. You don’t have a copy of the
letter, right?

DR. WHITE: In fact, I have two printed copies in front of me because I read
my email last night.

DR. CARR: Oh, good for you. So I don’t have to read word by word, but the
introductory paragraph is just some history of open government initiative, the
Affordable Care Act, just sort of some historical information. Anybody feel the
need to go through it? Yes, Susan?

DR. QUEEN: I just wanted to point out one suggested revision. The Executive
Order doesn’t actually say all government data will be open and
machine-readable. It would be going forward government data will be open and
machine-readable wherever possible and legally permissible is what the
executive order says.

DR. CARR: Thank you. Let me read it then. In addition, the Affordable Care
Act authorizes HHS to release new data resources that advance transparency and
health care provider market and health insurance market in significant ways.
With this data liberation, the expectation was – or is maybe – was
that opportunities would emerge to use HHS data to help consumers get the
information they need, help doctors deliver better care, help local
policymakers make better informed decision.

I should probably have that in quotes because I think it is a cut and paste.
HHS and other data resources continue to grow and our found in various
websites, including healthdata.gov, Health Indicators Warehouse, among other.
Susan? I want to make sure Susan is okay with this? Any questions with that?
This is the time to be draconian. There is no pride of ownership here. We want
this to come out right.

In 2012, the Workgroup on HHS Data Access and Use was created within NCVHS
at the request of the chief technology officer of HHS. The charge of the
workgroup was to advise HHS with recommendation to promote and expand access to
HHS data and to explore innovative uses and applications of these data, plural,
to improve health and healthcare. The workgroup is comprised of members of
NCVHS with expertise in standards, privacy, and population health. In addition,
the workgroup has consultant members, who are nationally recognized for their
expertise in innovative uses of data and population health.

Jim had said we ought to really emphasize – maybe say more about the
fact that these are not your usual government types. Is there anything we might
want to say there?

MR. SCANLON: I would say experts in – I would add technology, expertise
in technology innovation and innovative applications of data or something like
that. I think that is fine.

DR. CARR: So over the last 18 months, the workgroup has reviewed available
HHS data on healthdata.gov and the Health Indicators Warehouse and Health
Systems Management Project and others and discussed both the usability and the
utility of these data. Is that right?

MR. SCANLON: I would just say here that this is a focus on online data. Over
the last 18 months – I would say maybe as a first step, as an initial step
in this evaluation or this process, has reviewed available online data,
specifically those three. It is purely the online.

DR. CARR: Has reviewed available online HHS data, beginning with
healthdata.gov, Health Indicators Warehouse or something like that? Okay. We
can fix that. And discussed both usability and utility of these data. Do we
want to say that? That is what we discussed.

DR. WALKER: Since I raised that, I would withdraw my point. I think Walter
is right. We really are talking about usability and usefulness. I would say
usefulness because utility has such a strong set of connotations from economics
that it doesn’t really quite fit here.

DR. CARR: Anything else? Okay. Input has come from the workgroup members as
well as from HHS data staff, public and private data aggregation organizations,
as well as individuals from local communities, who are seeking data to support
local health initiatives. Workgroup members bring a particularly valuable
perspective as they are users of these data. I put that in.

DR. FRANCIS: Justine, did we get any actual formal submissions from anybody?

DR. CARR: No. We had presentations.

DR. FRANCIS: Right, but when we say something like input has come from
public and private data aggregation organizations, I want to be really careful
not to suggest that we got any official testimony.

DR. CARR: Okay. What is a good way to do that?

DR. SORACE: I am just going to say – just to go back to the ability of
users to access and use this data – I was just going to say you might just
go back and the ability of end users to access and use these data. It is just a
different construction you might want to consider.

DR. FRANCIS: The thing about access –

DR. SORACE: Or search and access. Access and find.

DR. FRANCIS: That is all about once we got the data up there, the worry that
led to some rethinking of some of this was not to imply that we were suggesting
that new forms of data in say more granular information content —

DR. CARR: Okay, what I am hearing is your words, while sensible, trigger
associations that may not be intended. I am going to move on. I appreciate that
and we may come back to it.

Here it where I put in workgroup members bring particularly valuable
perspective as they are users of these data. Is this good to say? Leslie’s
point. It may be over input – presentations were made – input to the
thinking that led to this letter come from the members of the workgroup and
from presentations that we had. A public – public and private data
aggregation organizations might be too – maybe we should be more specific.
I am thinking of Optum Labs, the Health Data Consortium. We had the fellow with
the Twitter presentation. We just had certain kind of random things. I don’t
want to overstate this. Please suggest.

DR. WALKER: Would informal input be the thing that you would want to say?

DR. FRANCIS: There were no formal hearings. There were no official
statements from any organizations that got organizationally vetted in the way
that often our full committee meetings do.

DR. CARR: I feel like saying in keeping with the wild and crazy style of
this workgroup, input has been more – I don’t want to present it like this
is a failed subcommittee of the national committee because they didn’t have
testimony.

MR. SCANLON: If I can interrupt, most FACAs don’t necessarily go through
this formal process we do. People will give them an idea and they will react to
it. I wouldn’t minimize it because we haven’t gone through all of these formal
hearings and processes. You do say that the recommendations are based on the
expertise of the workgroup members, presentations and briefings from users of
the data technology, technology experts, and so on. I wouldn’t minimize it
because it isn’t three rounds of hearings or so on.

DR. CARR: So informal input I think was a very excellent, friendly
amendment.

DR. FRANCIS: I think informal may be too casual. I would actually say that
workgroup members brought perspectives from or something like that just so that
it doesn’t look like formal testimony.

DR. CARR: I am going to just for the moment just put fix.

MR. SCANLON: Nobody would be looking for formal testimony. I think you have
established the standard. Most other FACAs – it doesn’t mean —

DR. CARR: Let’s just make a note of that. So on the other hand, because we
haven’t really gotten to – do we really only have 30 minutes? Didn’t
somebody cancel? I think this input is important. This is the first letter out.
I don’t want to misstate it.

Discussions have also occurred with the full NCVHS committee. The
observations and recommendations contained here reflect the discussions and
focus on two main areas, metadata and timeliness of data.

DR. COHEN: Comment. Metadata. Metadata means different things. Metadata can
be the structured messages that accompany the file description.

DR. CARR: Give me a friendly amendment.

DR. COHEN: We need to describe what we mean here. Are we talking about the
structured messages or are we talking about the plain English explanation of
what is in the data and how to use it?

DR. SUAREZ: Here is a friendly suggestion if you don’t mind. I do agree
there are two aspects of this. One thing is called data documentation and the
other one is metadata. I suggest we use data documentation and metadata in this
context. In metadata, we can describe it down there in the next session. I
would start with data documentation and metadata as well there because this
deals, as you will see in the description, this deals with both.

DR. QUEEN: I would like to add – Lily and I can do this – just to
go back to the executive order and see – there are some specifics as to
what these things mean. We can just verify.

DR. CARR: So now the observation – so this is new. Wait, what you see
here in red is what we had exactly yesterday. It is just a description of the
provider services file. It is just a shorthand. What is new is what we added
here about the Executive Order May 9th of 2013, entitled Making Open
and Machine-Readable the New Default for Government Information establishes a
framework to help institutionalize the principle of effective information
management at each stage of information life cycle. Some of this might be
verbatim.

It requires agencies to collect or create information in a way that supports
downstream information processing and dissemination activities, including
machine readable and open formats, data standards, common core, and extensible
metadata – all new information creation and collection efforts. Are we
supposed to say where legally permissible and where possible? Make a note of
that.

The Common Core metadata schema includes Common Core required fields, such
as title, description, keyword tags, modification, publisher, contact name,
contact email, unique identifier, and public access level. Additional fields
are identified as required if applicable and include, for example, temporal
applicability of the dataset. Additional data are identified as expanded fields
and are encouraged. These include theme, data dictionary, data quality
frequency with which the dataset is published.

That is the observation and the background. The recommendation then is HHS
could improve – here we have the utility and usability of health —

DR. SUAREZ: I would replace utility with usefulness as before.

DR. CARR: Do we just want to say of online data? Are we – of the online HHS
data?

DR. SUAREZ: It might not just be HHS data. It might be all federal online
health.

DR. CARR: Right. Again, we are working on scope here.

DR. SUAREZ: This executive order applies to all data. That is okay.

DR. CARR: We are just saying we are writing to the Secretary of HHS, asking
her to improve HHS data.

Okay, improve the usefulness and usability of the online HHS data by
providing more information about datasets in an easily digestible format.

DR. SUAREZ: Can I suggest one thing? It might be helpful to say online HHS
data, including data contained on healthdata.gov. We don’t want to just lose
healthdata.gov. At the same time, we don’t want to just limit this to
healthdata.gov.

DR. WHITE: Is this a good place to ask about USHIK?

DR. CARR: Jon, say more about that.

DR. WHITE: So in the sense that you are referring to a specific site,
healthdata.gov, in this discussion of metadata and the recommendations, I am
stepping into this process kind of towards the end. I apologize. Mike was here
before me. I am a little surprised that as you talk about the importance of
metadata that there isn’t mention somewhere in this of USHIK, our very favorite
11.179 compliant metadata registry.

There may be a reason for that. I was just wondering if anybody knew more
about that. If there is not a reason for it, might it be useful to mention, in
fact, that there is a metadata registry in HHS that could try to implement some
of these recommendations.

DR. SUAREZ: Thank you, Jon. This is Walter Suarez. I think USHIK is
primarily – we see it in the context of this letter, a catalogue of data
elements. It is a catalogue of metadata of data available in many different
places. I think what this letter was trying to do was really move towards
enforcement of the use of a common set of standardized metadata schema across
all databases.

I think the reference to USHIK can be made in the sense of data should be
additionally catalogued in the USHIK system, but USHIK doesn’t define the
standard, itself, for metadata, which is what we are trying to move towards is
having the Common Core metadata schema to be used across datasets.

DR. CARR: So I just want to make a comment here. This is where I think
having staff from a variety of areas will help us not miss key important data
elements. This has not come up in the discussions in the workgroup. I think
what we have learned from this letter is there has to be a deliberate
investigation of related fields.

I am going to ask Jon and Walter to take a look at this and give me some
language that would acknowledge – would represent that we understand this
resource and a few words about how it would affect —

MR. SCANLON: Again, I would like to cabin this. We already have the
recommended metadata improvements that are part of the would-be policy. I think
here we are just trying to get – we have a modest goal here. We don’t want
to introduce all sorts of other things that we haven’t evaluated.

DR. CARR: So if there is something we can say that recognizes that, but I
think you are right. We have the recommendation for how the data is supposed to
go forward. Our recommendation is can we retrofit it. The recommendation,
overarching, is HHS could improve the usefulness and usability of the online
HHS data, including the data in healthdata.gov by providing more information
about datasets in an easily digestible format. That is the overarching comment.
Any comment on the recommendation?

Next up – now, we have a bunch of bullets under it. Number one, data
publishers should retrofit where possible the elements of the Common Core
metadata schema to the existing datasets wherever possible and legal.

DR. FRANCIS: This isn’t an objection to that. The way I read this in the
context of the earlier example, this is a request for CMS to retrofit all of
its provider data in the other file, which I have no clue about the potential
expense of that.

DR. SUAREZ: I think retrofit is a strong word. I think it is incorporate the
metadata.

DR. CARR: Yes, apply the elements.

MR. SCANLON: No one is going to stop and go back.

DR. SUAREZ: Yes, it is not reconfiguring the data. It is just documenting
the data properly.

MS. MILAM: Instead of possible, maybe where practicable. That alludes to
budget issues and resource.

DR. CARR: And legal? Or does that encompass legal? Number 2, data publishers
should write the title and description as if the audience were not familiar
with the dataset, the data system, or the data collection. The description
should include common vernacular to complement sector-specific terms and spell
out acronyms.

MR. BURKE: Could we change that to select a title and provide a description?

DR. CARR: Data publishers should select a title.

MR. BURKE: And provide a description.

DR. TANG: Do you think plain language is not sufficient for all of those
words?

DR. CARR: What are you saying Paul?

DR. TANG: I was just reducing all of those words to plain language.

DR. CARR: We will work on that. The data dictionary should be provided in a
machine-readable format with easy to use variable names that also function as a
crosswalk file with relevant data linkages identified. This might be a little
bit redundant. Did we already say this in the 13.13?

DR. GREEN: Justine, one of the key findings was data sitting there are not
in machine-readable format. I don’t think that is redundant.

DR. COHEN: I am concerned about the data linkage issue. If you talk about
data linkage, do you need identifiers to link different datasets? Is that what
you are talking about? Direct linkage of –

DR. CARR: I am not sure they mean linkage.

MR. SCANLON: I would delete that. It is what is there now. It is linked and
de-identified. It is already up on healthdata.gov.

DR. CARR: I think what they are saying – I pulled this dataset to
answer this question. Readers who used this also like three other datasets.

MS. MILAM: Justine, you can add variables to that second bullet.
Descriptions should use common vernacular to complement sector-specific terms –
add variables in there because you are trying to get to the same point there.

DR. FULCHER: A quick comment on the description side here, the English
version, we should be real clear that it should include the date that it was
created. There should be some very basic English-type fields because most of
the folks that I work with don’t get into the metadata, which in some cases
could be 375 pages long just around one data layer like transportation. They
don’t get into that depth. If we just say description, there may be some
important element like the date it was created, the source, three or four top
fields. I think I sent that to you.

DR. CARR: We may go back then to what Bill Davenhall put together. He had
sort of an example of that.

DR. TANG: Like everything, there is a tension. I am a little now worried
that we have done so much to make it easy to read the variable names that we
actually may have missed the point about what is the variable – what is
the data in that variable name.

The famous example was smoking. If people don’t understand that smoking was
only 100 per lifetime, they may attribute lots of other things to it. The fact
that it is an easily understandable term smoking probably makes people miss
some – this is happening a lot in the EHR. The whole quality reporting we
are getting all kinds of reports that have widely varying meaning and impact
only because people don’t understand the workflow of how you put data in. I am
nervous that we may have gone way on this side of make it in plain English, but
not actually understand the – that is the real metadata. What actually
caused that data to be put in there? What does it represent?

DR. CARR: Do you have a restatement?

DR. TANG: It is specific and more possible standard definitions.

DR. FULCHER: There should be both. It is not one or the other. I really
agree with you.

DR. TANG: You could do your first search, text search on variable name and
come up with it, but then you should have the metadata, the true definition.
Part of our advice is and use standard definition where possible. If they
aren’t correct currently or ten years ago, let’s move towards standard so we
can do more and more aggregation of data in a meaningful way.

DR. SUAREZ: I feel like we are mixing two concepts here. There is the data
dictionary that defines the standard – that provides the definition of the
data elements. Then there is this data publisher notation of what the data is,
which is more vernacular. I think, Paul, your comments probably are really
about the data dictionary that you use.

DR. TANG: You don’t want to have people fooled into making wrong decisions.
For smoking, you can make – you could make city laws based on your
interpretation of smoking, your common interpretation of smoking, only to find
that actually it was people who —

DR. CARR: So I am looking for a recommendation. Bullet one, I think we are
okay. Bullet two, we need to tidy this up.

DR. SUAREZ: I think we should keep the data publisher bullet, too, to just
simple description in vernacular way. Bullet three, the data dictionary, should
use standard definition for terms and should be provided in machine-readable
format.

DR. MAYS: I just have some problems with the notion of a standard
definition. I understand what you are trying to get to, but for dataset, I
mean, that is one of the things is that they each sometimes have a way for a
very particular reason. That reason is how those variables may be clustered. To
me, that is a big discussion. That would be one that there would be pushback by
some of the surveys on. We have tried to do this before. That is a real red
flag.

DR. TANG: You are saying keep the precision there, but don’t try to move
towards standards?

DR. MAYS: I am saying for this letter I don’t know that we have the –
it is going beyond the scope of what we heard. I think there are some bigger
issues. I agree with what eventually we should try to do, but I don’t think
this letter is the place to put that. I think we will get pushback from the
agencies. Right now, I think that is beyond what we are trying to accomplish.
The point is good. I don’t know if this is the place for it.

DR. CARR: This is what we heard very loudly from the data users. They don’t
understand. There are content experts who are not technical. There are
technical experts who are not content experts. They don’t know the
relationships. They don’t know what terms go together.

DR. MAYS: But I think that is a different point. Say that. That is what one
works towards. I think when you say standard definition you are asking every
agency to define a variable in the same way. One variable change means
changing, sometimes, a lot of others. A smoking study may want to do it one way
and a non-smoking study another way.

DR. CARR: So let me read what we started with, which I think is what we
might stay with. Data publishers should write the title and description as if
the audience were not familiar with the dataset, the data system, or the data
collection. Descriptions should use common vernacular to complement the
sector-specific terms and spell out acronyms. I don’t know – do we want to
say variables here? That was the original request.

MR. SCANLON: I think that works.

DR. WHITE: That is reality. The reality is it is messy and it takes time to
have people compare apples to oranges. That is where Mike has convinced me of
the value of something like a metadata registry where you can compare across
those sets of metadata and try to figure out where they match and where they
don’t.

Did I mention I have also become the project officer for USHIK?

DR. CARR: My apologies for my ignorance. I will be reading about it.

DR. COHEN: So maybe in the third bullet, to address the issue that Paul
wrote, the data dictionary should be provided in machine-readable form with
easy to use variable names and specific definition – and clear
definitions?

DR. MAYS: Specific and clear.

MS. BRADLEY: What developers have said is if you have six different files
that talk about hospitals and there is the hospital – the CCN, the
Medicare number, that you might just flag that to make it easier for them.
Otherwise, it might have different names in different files.

DR. COHEN: That should be a separate bullet.

DR. QUEEN: The issue, too, is the data producers won’t necessarily know all
of the other potential data systems that may have this variable.

DR. GREEN: Let’s hold on. I am going to hit the pause button here. We have
learned enough to know what the limits of our adaptive behavior is. We have hit
them. We are out of time. We are going to need to be adaptive in some other
way. Just one man’s opinion, I think this has been a stunningly useful exercise
for us.

What we have done is we have taken a workgroup that has never submitted a
letter or any product before. They produced a product and came to the
Committee. The Committee wanted to rewrite it. The workgroup hasn’t had a
chance to see it. We are serving as an editorial board and editors of the
working group’s work. It still contains the core of stuff that they
recommended, but it is dramatically different from what our working group
produced.

The product that we got was produced without the interaction across staff
that we often get and often have. We can see that right now in the room other
staff from other elements of the enterprise are pointing out things that need
attention. We are not going to get this finished today.

I wish to propose the following. Jon and Susan and anyone else that spotted
stuff in here – this is now publicly out there – that they submit
changes and suggestions to Justine and the working group. The working group
will meet this afternoon. I believe we can translate to the working group the
reactions that came from the Committee and staff quite well. We ask for them to
continue to work on it and make some further revisions. We put this on the
agenda of the executive subcommittee to review a revised product as soon as
possible. Get the call schedule tomorrow or as soon as possible. And that we
hold a virtual meeting of the NCVHS probably in April or May where this is the
agenda topic where we attempt to then do a final approval of this letter. Would
that be acceptable to the Committee?

DR. SUAREZ: It would be great. I think, given the outcomes of some of the
Subcommittee on Standards, where there might be some letters as well, short
ones, we would appreciate having a full committee meeting before June so we
could take action on some of those things.

DR. GREEN: The practical issue here is our June meeting is destined to be
loaded up with more than we can possibly get done. We need to do something in
the interval. I think that is a way forward here. It is transparent. It gives
everyone an opportunity to do this.

Justine, keep going. At the current rate we are going, it would be
approximately ten minutes of twelve before we would finish going through the
rest of this abbreviated letter. I just think we need to extend it and say we
have to work some more. We will come back to it. Our aim will be by April or
May to have this letter approved and submissable. Everyone okay with that?

Anyone want to offer a round of applause to Justine and Lilly here?

(Applause)

DR. GREEN: I have a request to the Committee members. This is the working
group’s letter. They are required to submit it to the Secretary through this
committee, but I don’t think we want to establish the precedent that after the
working group does its work and submits the product that we take the approach
of, well, we will take it apart and rewrite it the way we want to as opposed to
review and comment.

This is new territory. There is no precedent. We are inventing this right
now. I wish to just tap the vector here away from establishing a precedent that
what was going to happen when the working group produces a product is just
going to come here and it is going to be dissembled, taken apart, and become
something else. What we really want to do is take advantage of the working
group’s expertise and channel it into the fuller discussion and the fuller
debate, not do it again in a different way. Am I getting away with what I just
said? Is everyone okay with that?

DR. CARR: Thanks, Larry. I agree. I do think that having the meetings here
at HHS is hugely beneficial. It increases the likelihood that we can get
participation from various relevant agencies who can inform because I think
what we discovered here is that there is the user experience out there. There
is the government dataset. There was a gap in that cross-fertilization. That is
what we want to fix.

MR. SCANLON: I applaud both Justine and Lilly and the whole workgroup
because I think you pulled together what was a very wide ranging set of
discussions and ideas. The Department has asked for this. I don’t want to have
– this is a very hard working committee. We have very formal processes.
This working group is somewhat disruptive, but we do have to find a way to deal
with these without changing them. Otherwise, the Department is going to form
another committee, which would make no sense at all.

We have to find a way to do these fairly efficiently. Maybe it is
simplifying, in terms of what specifically was asked. I think we want to hear
these folks. They are not the usual. They are not like us. That is why we have
them. They are the ones who take this data and use it. Again, I think this is
the right process, but I think we have to think of an easier way to do this in
full committee. Otherwise, I think we are sort of losing the utility of having
that perspective.

DR. GREEN: So I think we are agreed about that. We are not going to take a
break right now because we are privileged to have a guest. I am going to ask
Jim to introduce her. We are going to have the opportunity to do a little NCVHS
development with getting updates and some new information.

MR. SCANLON: Thank you, Larry. We are very happy to have Carter Blakely here
today. Carter is the Deputy Director of our Office of Disease Prevention and
Health Promotion. The Office has spearheaded the development and management of
Healthy People Initiative. We are working on Health People 2020 now. I might
mention that Healthy People is a good example of interest in local – not just
national objectives for the nation, but state and often community level Healthy
People goals as well. Actually, Health People does have a way of getting at
some state – and typically – I am going to steal Carter’s thunder,
but the Healthy People usually goes to the next step of saying these are
interventions, evidence-based interventions that have worked for prevention and
health promotion in these areas. It is a very widely referenced website.

Carter, we asked you here today to kind of describe how you are reflecting
social determinants concepts in Health People.

Agenda Item: Social Determinants of Health –
Briefing and Discussion

MS. BLAKELY: Thank you. I actually enjoyed the discussion about the letter.
We had a Healthy People FACA for the development of 2020 that had similar
discussions. I can appreciate it.

I recognize a lot of names here. I don’t know everyone, but I recognize your
names. I am glad to see you here and glad to know that there are so many people
who are familiar with Healthy People and who we work with.

Healthy People, I think probably most of you know, is a national agenda for
disease prevention and health promotion to improve the health of the nation
looking at a decade at a time. We have been around for a long time, too, about
four decades.

What sets us apart from some of the other prevention agendas in the country
and around the world is we do have individual, specific objectives. We are up
to about 1,200 right now. Each of those objectives has a data source and
whenever possible a target. We have something we call developmental objectives
where we are allowing agencies to hone their data collection so that we can
establish baselines and set targets.

I am sorry that Charlie Rothwell couldn’t be here. I haven’t met him yet. We
are scheduled to brief Dr. Koh and introduce him soon, but we could not do our
job without the National Center for Health Statistics. I think they have up to
over a dozen people working on Healthy People now. In ODPHP, we have seven.
That is how important the data is to Healthy People.

We are stakeholder driven. Though we are run out of HHS and managed by
ODPHP, we really listen to our stakeholders, whether they are at the
state/community level, professional organizations – we even have private
sector buy-in and corporate buy-in. Every decade when we develop healthy people
we go through an extensive public comment period so that we can hear what is
important to people outside of the government, as well as inside. The
government agencies are some of our biggest stakeholders because Healthy People
is ingrained into many mission statements and strategic plans not only at HHS,
but outside of HHS as well.

We are managed within ODPHP in the Office of the Assistant Secretary for
Health. We have a federal interagency workgroup, which is comprised of agencies
and offices throughout HHS. This decade, we are different. We expanded. We
actually have members from about 11 different departments. Some of those
departments are some of our most vocal participants. We have USDA, the VA,
Department of Ed, HUD, Interior. USAID has now joined us. We have been working
closely with them. We do – it is actually in response to our social
determinants of health approach that we tried to broaden our spectrum here.

In developing Healthy People 2020, we had the additional input from the
Secretary’s Advisory Committee. There have been Secretary’s Councils in the
past that have participated in the development and oversight of Healthy People.
This decade we were able to get approval for a discretionary FACA. We are not
in statute. But it was comprised solely of public members. In the past, we have
heard former Assistant Secretaries for Health participate and it is like
singing to the choir when you have the former heads of your program advising
you.

We were led by Jonathan Fielding from L.A. Our co-Chair was Shiriki
Kumanyika from University of Pennsylvania. They were wonderful leaders for us.
They are the reason why we have SDOH in Healthy People 2020.

This is just a timeline we put together to demonstrate how Healthy People
has spanned about four decades and all of the important public health events
that have occurred during our lifetime. Healthy People has been able to
accommodate all of those events over the last 40 or so years.

One thing we are doing differently with Healthy People 2020 and this is in
large part because we are online is that we are allowing flexibility throughout
the decade. We kind of opened up a can of worms because it was very easy to say
at the beginning of the decade here are your objectives. You have ten years to
reach them. We will talk to you again in ten years and see how you did.

What happened with 2010 – so much happened right after we launched
Healthy People 2010. We had 9/11. Healthy People didn’t have anything about the
importance of public health and terrorism. We also had the influenza threat. We
hadn’t addressed that. We had Hurricane Katrina. There were all sorts of
important public health events that because of the rigidity of the Healthy
People process we couldn’t incorporate that.

What we did with 2020 was said, well, we are online. We don’t have to worry
about reprinting three telephone books worth of objectives just to stay
current. We can update as we go along. That is what we have incorporated into
the Healthy People 2020 process. We have an annual public comment process that
allows the public to provide input of what is needed, what is missing. It also
allows the agencies to come back to us on an ongoing basis to propose new
objectives, say they want some changes. We hold all of those proposals
throughout the year. In the fall, we put them out for public comment. We go
through the Departmental clearance process.

That has been very helpful for, in particular, SDOH because it was such a
new area. It has taken us a long time to get our hands around it. We didn’t
have objectives when we launched, but now we do thanks to that new process we
initiated.

Here, you can see how we have grown over the years. We started out pretty
small with 226 objectives when Healthy People objectives were first launched in
1980. Even though we are the Office of Disease Prevention and Health Promotion
and we are leading the National Fiscal Activity Guidelines and Dietary
Guidelines and trying to fight obesity, we have done a horrible job with
Healthy People. We have gone up to about 1,200 objectives and we continue to
grow. I think that is, in part, because we have such a huge stakeholder base.
Every decade there are more and more people who come out of the woodwork and
say they want to be part of this.

When we started the development of Healthy People 2020 we had an independent
assessment done by NORC. They had their own advice. We recommended approaches
to them. Their recommendation, which we loved, was that we needed to scale back
Healthy People. It was too big, too cumbersome. They recommended that we only
have 15 topic areas and those all be very upstream. We don’t get into the
categorization of diseases. Each of those 15 topic areas should only have 10
objectives. We thought that was great from a management standpoint.

We went out to the public starting in 2007 with that approach. Everyone
loved the upstream approach. We had public hearings around the country. Lots of
comments to the advisory committee and through the snail mail, but every single
person who got up said oh, this is a great approach, but we are important. You
are not going to drop us. We had more people lining up to talk to us and tell
us how they were using that one objective.

The advisory committee followed us around the country. We had at least one
representative with us each time. The advisory committee ultimately told us you
can’t do this. They actually recommended to the Secretary that Healthy People
not shrink. It really had an important role to play in establishing benchmarks
and kind of guiding all sorts of areas for public health.

Not only just from the objective and national visibility point, but we had
worked so long with the National Center for Health Statistics and built up a
tremendous data resource that there was a real concern that if Healthy People
suddenly dropped off a lot of these objectives, there would be no impetus for
the agencies to push for their data collection. We said okay. We have nothing
to do with this. We were told we have to do it. We plowed ahead, but it made
our life very easy because we didn’t have to say no to anyone. That was a
benefit, though we are paying for it now with management.

The advisory committee did ask us to focus on the social determinants of
health. They actually, within the Federal Interagency Workgroup, we put forward
about two overarching goals. The advisory committee spent about two meetings
tweaking them just like you did with your letter, rewriting and rephrasing.
This is what we eventually came up with.

They added the overarching goal to create social and physical environments
that promote good health for all. They also wanted us to put an overarching
goal to emphasize the importance of life or health across the lifespan. We
hadn’t had that before. They raised the bar for our overarching goal for
reducing and eliminating disparities. They asked us to focus on healthy equity,
et al. That is a little bit of a difference we have now.

We went about incorporating and elevating the presence of social
determinants of health in Healthy People 2020 in a variety of ways. One was
with this overarching goal that I just showed you. Another was with the leading
health indicators, which are a smaller set of objectives and topics from
Healthy People 2020, was to include an indicator topic and objective on the
social determinants of health. We developed these leading health indicators
with input from the Institute of Medicine, who had recommended 12 topics to us.
The advisory committee worked on it as well.

We didn’t use everything that IOM recommended. The advisory committee had
almost the final word. The Department really had the final word with
departmental clearance and that process. We all shared the desire to have
social determinants be one of the leading health indicators.

This is the objective that was selected from the 1,200 in Healthy People
2020 to serve as the LHI on social determinants of health. It is students who
graduate with a regular diploma four years after starting 9th grade.
That is an objective that is included in our adolescent health topic area. At
the time the leading health indicators were launched, we didn’t have objectives
in SDOH. When we launched Healthy People we just had an explanation of its
importance and the intention to develop specific objectives.

Then another way to elevate the importance of social determinants of health
was to give it its own topic area. Again, that was a challenge because every
topic area has to have objectives. We realized this was important. In saying
that we were going to be flexible, we were able to declare a topic area for
social determinants of health and say we would continue to work on developing
specific objectives.

We have a workgroup on SDOH. It is made up of folks from HHS, other
departments, and then we do have kind of on an ad hoc basis, leading experts
from around the country who will participate in meetings when we ask them to.
We have Paula Braveman from California, John Allegrante from up in Baltimore or
New York. It has been a complicated process because we have had to get those
different departments to the table. I think everyone can understand the
importance of working across sectors, but it is another thing to actually do
it.

One of our very first meetings several years ago, we had different
departments on the phone. We were talking about social determinants of health.
The representative from Education said I think you have it all wrong. From our
perspective, it is the social determinants of education. That kind of opened
our eyes. Oh, we are not the only player. What we learned is that we can’t
expect all of these other sectors to come to us, but we have to go to them. It
was a tremendous eye-opener. It kind of humbled us in a way. We have been
humbled in different ways because we have to work closely with other
departments so we don’t step on their toes if we put an objective in Healthy
People.

The group took a couple years just to come up with their organizational
structure for the topic area. What we have are five determinant areas and
associated factors that I will show you in a minute. Just recognizing that each
of these areas interplays with each other and they affect not only individual
health, but community health as well.

Here are domains that we came up with. We had the neighborhood and built
environment, education, economic stability, health and healthcare, and social
and community context. We put this out for public comment and departmental
clearance. There was a lot of discussion and wordsmithing on all of this and
there continues to be. It could change since we are flexible.

This is just a graphic that we have put up on our website just to very
simplistically show how this all flows together. We have these five distinct
domains. They don’t operate independently.

Under each of our domains, we have key areas that we have identified. For
neighborhood and built environment, we have quality of housing, crime and
violence, environmental conditions, access to healthy foods. For education, we
have high school graduation rate, school policies that support health
promotion, school environment that is safe and conducive to learning, and
enrollment in higher education. For economic stability, we have poverty,
employment status, access to employment, and housing stability.

For health and healthcare we have, access to health services, access to
primary care, and health technology. For social and community context we have,
family structure, social cohesion, perception and discrimination and equity,
civic participation, incarceration, and institutionalization.

Those are what we strive to eventually have are objectives in each of those
areas. We don’t have them all now, but we are working toward that.

Besides being a new area for us to really focus on in terms of objective
development, it is a challenge because SDOH – the concept has always been
ingrained in Healthy People. Even when Healthy People, the report, first came
out in 1979, there was mention of the importance of the influences these
determinants can have. Each decade we have recognized that, but we have never
really articulated it and elevated it as we have now. It has been an
interesting time for us.

Because SDOH is really not new to Healthy People, we have objectives
throughout the 1,200 that are relevant to us. We have about 600 if you do a
conservative scan that we could say would belong in a topic area if they
weren’t already owned by someone else.

We continue to develop new objectives. We had the first round of public
comment. We added three objectives. We just added a fourth that just made it
through departmental clearance in the last couple weeks that will be up on our
website soon. We have what we are calling the 600 objectives that complement
SDOH since they already exist in Healthy People.

These are the objectives we have so far. We have populated economic
stability and education. We have – it looks a little bit confusing because
I have repeated the titles of economic stability, but that just has to do with
the database and when they were added. So that we don’t have a database
nightmare with NCHS, who is managing all of our data, we just decided we would
do this. It is not very elegant, but at least it works for the database.

For economic stability, we are looking for children living with a parent who
is employed. For education, we have a different objective that we developed for
this. It is looking at kids who graduate from high school and then start
college right after that. Economic stability, we have – we are looking at
poverty, both overall for the population and children and this last one SDOH4
is one that is not on the website yet that we just go approval for. It is
looking at the amount of income that is spent on housing. That last one, once
it is on the website, will be broken out to more elements.

Here are some examples of our complementary objectives that are already in
Healthy People. We have some in access to healthcare services. That is the AHS
and adolescent health and then disability and health. They are all throughout
Healthy People. Again, we had to do this to recognize or have our other
agencies and departments recognize that we know that they have done work. There
was some talk about pulling these all under SDOH. That would have started a
little mutiny, I think, if we had done that.

The next steps for us, we will continue to develop additional objectives.
The way we approached our objective development was to look at the complement
of what we have in Healthy People already and identify gaps. The gaps are what
we are working on. It is a new area for us. We were timid about looking at
poverty, things that could be considered controversial, depending on where you
are coming from.

We received funding from CDC, who is a co-lead with ODPHP and HRSA for this
topic area, to develop our website. ODPHP, as Jim knows, has no money. We did
this on a shoestring. We just pay for the – we call it the brain power.
The programs have all of the money, all of the agencies. We have really no
influence, but it works. We are always amazed that it works.

We plan to build out our website so that we can provide some tools to make
the concept of social determinants of health understandable. How do you take it
from the theoretical and really put it into practice?

I participated in an IOM workshop right before Christmas just on data, just
on indicators. I think what we all agreed with – everyone is looking at
social determinants, but it is really hard to communicate. It is easy to talk
about, but do people really understand what you are talking about? Do they know
what to do to improve in that area? We hope to have tools on our website that
can really improve that area.

We also have something new with Health People this decade called our
evidence-based resources tool that, again, was developed in response to a
request from the Secretary’s Advisory Committee, where we are connecting
evidence-based interventions and tools to the objectives. We hope to be able to
populate that area of the website for social determinants of health as well.
Again, we just continue to work with our consortium members and our other
stakeholders to get the word out and help them implement all of this good work.

Here are some of our key supporters for Healthy People and the social
determinants of health. Sir Michael Marmot from the UK actually worked with us
and the advisory committee on developing the social determinants of health
topic area and just concept from Healthy People. We actually had another
meeting with him in November where we could update him on everything we have
done. Of course, he still – he has always said we are too big because in
the UK he has pointed out three areas to focus on and some six objectives, but
he actually has assigned one of his colleagues to work with us. We are on the
phone with her a lot. We are learning a lot from him.

Howard Koh, our Assistant Secretary for Health, has been a huge supporter.
If it weren’t for him, we probably wouldn’t have the resources we have today to
continue our work. The Institute of Medicine is always leading the way. We like
to site their report from 2002 that just points out that we can’t do it alone
in the health sector.

We are really with it this decade. I have learned a lot. We have always
known about the web and email, but now we do Twitter. We have LinkedIn
conversations. I am actually on YouTube. It is a different world. We discovered
that when we actually went online versus paper – we thought we were going
to save a lot of money. We have learned that is not true at all. Anyway, that’s
it.

DR. GREEN: Thank you. That was terrific. She just showed us five different
ways to contact you. I think we should invite all the Committee members to
comment and requests for information. I expect you are receptive to that.
First, let’s take just five to ten minutes here before we take a break to have
a chance to ask questions and talk.

I will just make one quick comment. I quit counting as I went past a dozen
points that you made that are directly cogent to, consistent with the work we
have engaged in, particularly around the notion of community as a learning
system for health. The overlap is virtually complete.

I saw Walter is first and then Paul. We will go counterclockwise here.

DR. SUAREZ: Thank you. Incredible review. Thank you very much for providing
us with that. One area that I thought it would be helpful to ask about I didn’t
see specifically coming out. It is really a concept that is taking new shape in
this health reform world. It is the concept of wellness. We are not in the
business of disease anymore. We are not in the business of health or
healthcare. We are in the business of wellness. I wanted to see what your
perspectives are.

MS. BLAKELY: You didn’t see it, but it is there. It is not in this
presentation. It is a new – well, it is not a new area, but it is still a
growing area. There is a lot of learning going on there. We do have a topic
area on health related quality of life and well-being. That is another topic
area.

We had SDOH, health-related quality of life and well-being, LGBT health.
Those were the three areas we did not have objectives for when we launched
Health People. It was because they were during public comment in the
development process. They were really highlighted as areas that needed some
attention. But again, since they were new to us, it just took a lot of time to
pull people together. It is really a difficult area to get agreement on,
especially well-being. That was especially contentious as to what was the right
way to measure well-being.

We were successful in finally working with different people and CHS, CDC,
and NIH as a whole. Everyone has an opinion on that. We did get objectives
through the interagency workgroup for health related quality of life and
well-being, out for public comment, and through departmental clearance. Those
also will be going up on the website. It is there, but it is tough.

DR. FRANCIS: This is a related question, I think, which is the whole issue
of mental health and substance abuse services and the availability of them. For
example, the health and health care calls out clinical and preventive care, but
it doesn’t call out mental health. I don’t know whether it should.

I have just another observation. I don’t know how you link any of this up
with local variation in the significance of some of these indicators. I am
struck by the fact that a significant percentage of young people in the state
of Utah do not go directly to college. They serve LDS missions. That measure is
going to look weird in Utah because what these kids do is they then come right
back and go to college. In fact, they are likely to be more stable kids.

MS. BLAKELY: Actually, there was a lot of discussion around that. There were
people who just couldn’t stand that objective for that reason. There are people
who go into the service not because they are not bright and don’t want to go to
college, they just decide they want to go serve their country, especially
recently I think that has been a trend. The research bore out that this was a
good indicator of success and well-being further down the line. There are
exceptions to that

DR. TANG: I will piggy back a little bit on these two prior comments. A
common affliction for the health nation is aging. I see that there is an aging
section. It talks about quality of life, but, actually, it is all through the
lens of diseases and health care.

When we talk about social determinants one social determinant I can think of
is loneliness, which is an affliction of this big segment of the population. It
kills the main people. It is 45 percent increased mortality in six years and
twice the rate of disability. It seems like a different dimension than is being
measured here. Any comments on that?

MS. BLAKELY: You are right. It is. That is not included right now. Actually,
we just had our program review with Dr. Koh February 11th where we
presented everything we are doing. In our talk, we had one slide that was our
vision for the future for ODPHP. At the top, there was a healthy aging emphasis
and recognizing just that, the community context. Community is important as you
grow older. We have been talking about that nonstop for the last couple weeks.
I think it is not only in ODPHP, but it is across all of the OASH offices and
across HHS. There is a lot going on with that. We are looking at that.

That is one thing we have noticed with Healthy People with being flexible.
We can accommodate things. What we are grappling with now with that flexibility
is we are coming up to our mid-course. We have already started working on our
mid-course review with NCHS. We have a cutoff for – we have to say at some
point we can’t add anymore objectives because what is the point of having ten
year targets if you add a year before you end.

We are coming up with a plan. We just talked about this this week. A group
is going to be working on some guidelines that would hopefully allow us to
continue to add objectives. At this point, they would be informational. They
couldn’t have targets after you reached a certain point, but just to show that
they are important.

Believe it or not, we are working on Healthy People 2030. That was also on
our list. By allowing us flexibility and recognizing more important areas, we
are on our way to 2030.

DR. FULCHER: I know that HP 2020 was very helpful in this Public Good
Community Health Needs Assessment and having that benchmark there as part of
the reporting was really very helpful. I just wanted to thank you again on
that.

I know last year we talked a couple of time about granularity of data. We
are talking about it in our group as well. What is your group talking about? I
know there are some challenges there. I just was wondering if you would be able
to share anything about what you are thinking about granularity. You are really
working closely with communities.

MS. BLAKELY: That is a challenge. Even sometimes state-level data can be a
challenge. We are working closely – we had been working with the Health
Indicators Warehouse and try to tie into all of that and working with
communities. It is a challenge. Funding is a huge part of it for us to even
include state-level data. Healthpeople.gov we have Data 2020, which used to be
Data 2010 was separate and it was on the CDC website. It is now CDC is staffing
it. That is what the 17 people do. It is housed in healthypeople.gov. We are
working on getting the state-level data up when possible for the objectives.

Then we are just trying to figure out what can we do about the county-level
data or the lower level data? We do work with communities. What we say is they
clearly can’t take national level data and use it, themselves, but if provides
a benchmark. Communities can compare how they are doing against the national
level. Even though it might not be comparable, it is still sort of a benchmark.
We do the heavy lifting in terms of identifying areas that, at a national
level, the government is dragging. It is a huge challenge.

Working with your group and others – we work closely with NACCHO. We
are all over NACCHO’s website. They are constantly going out – actually,
they have taken the social determinants of health now. They have a show –
I am not sure if you have seen that. They have a presentation they have
developed when they go out to the counties and local health departments. They
are showing how to take what the counties are doing and link it into the
Healthy People 2020 framework for SDOH.

There are ways to do it. It is not easy. Especially when you have no money,
it is very difficult.

DR. BLEWETT: You don’t have money, but you do have Healthy People 2020. So
thank you so much for the presentation. Just a couple questions and comments.
Was there any thought about pulling out the social determinants of health and
have it be a standalone? Instead of putting everything in 2020, have some kind
of separate reports or processes?

MS. BLAKELY: Well, not in that sense. There is nothing to stop anyone –
it doesn’t have to be us. There used to be companion documents. Now, there are
companion websites all over the place – universities, et cetera. It is all
over, just not print. There is nothing to stop anyone from taking Healthy
People social determinants framework and developing it to meet their needs. The
official leads for SDOH and HHS are ODPHP, CDC, and HRSA. We have been working
– CDC has really done a lot in that bench, but I would say right now
funding would prevent us from doing something like that.

DR. BLEWETT: Do you have any metrics that you can look at like how many
people access all of your new social media sites?

MS. BLAKELY: Yes. It is great. We are doing really well. It is basically a
new site. We have – out of our office, we have a site called
healthfinder.gov that has been around for a couple decades now. We are taking
over that. It is really interesting. We are finding that people who go to our
site, they spend a lot of time on each page. It is not like they are clicking
through. I think it is because there is real information there – the data,
interventions.

It has been very good. In fact, we were ranked as the fourth most popular
and liked health website in the federal government. It was in the Washington
Post. We do it on a shoestring. I think it is all of the stakeholders and we
have a reputation.

DR. GREEN: Maybe you can reduce your outcome measures to number sightings in
the Post.

DR. BLEWETT: I don’t know if you have seen the Robert Wood Johnson
Foundation messaging around social determinants.

MS. BLAKELY: We have.

DR. BLEWETT: It is really interesting.

MS. BLAKELY: It is good. We work with them and PEW as well.

DR. MAYS: It is great to hear the update. I was on the IOM Leading Health
Indicators trinity. The part that I want to get a sense of where you are going
with is the new areas. You talked a little bit about wellbeing. One of the
things that we talked about in the report about wellbeing is this issue of
social connectedness. Really, we were hoping that that would be something that
would get picked up. What we would start to do, which would have implications
for NCHS is to come up with something, whether it be happiness, life
satisfaction, or something. I am going to look forward to when those go up on
the web to hear.

MS. BLAKELY: Yes. It is a very difficult discussion.

DR. MAYS: The other is the LGBT. I think the T was in there.

MS. BLAKELY: The T is there.

DR. MAYS: Yes. Okay. Any sense of what your next steps will be in terms of
populating objectives? In the report, we actually populated objectives for that
area.

MS. BLAKELY: No we do have two objectives on the website right now. They are
all data related. In those, the reason we have a topic area in LGBT was the
public comment period, all of the regional meetings. There was really a strong
push for that.

We, through the initial public comment process, before Healthy People 2020
was launched, we had a slew of really good suggestions for possible objectives.
We didn’t have time to do that before we launched so we started working on that
immediately. We have two objectives that look at – the goal is to have
standard questions in the national datasets that we use for Healthy People.
That would be HIS —

MR. SCANLON: We have HIS and we have BRFSS.

MS. BLAKELY: We are looking at – now, those are developmental. We don’t
have the numbers with them. We are looking at adding additional objectives
because it is – I think it is a little bit of a struggle to get those
national level standard questions through the pipeline. There are questions on
BRFSS. We are talking to NCHS now in the workgroup about whether or not we want
to make objectives out of looking at datasets overall, not just those national
level. We are aware of that. The data collection is really the issue.

MR. SCANLON: We finished the year 2013 of the HIS data collection. Again, it
will depend on the numbers. The prevalence was fairly small, three or four
percent, but there may be numbers emerging from Health Interview Survey as
targets or measures. BRFSS is actually in the field now for 17 states. That
might provide some state – and then 13 additional states are using some
variation of the question. More sexual orientation than transgender.
Transgender is very tough, but it is included in the BRFSS. We have made some
progress there.

MS. BLAKELY: We split out the two objectives that are up on the site now. We
split out transgender from LGB just because it is difficult.

DR. QUEEN: I just have a quick, quick question. Related to this, in looking
at the inventory of what is being asked in sexual orientation across the HHS
surveys, I had a number of surveys that have added a sexual orientation
question, HHS surveys, however they are not on the Healthy People list. There
is a Healthy People list of data systems –

MS. BLAKELY: Which surveys?

DR. QUEEN: I wouldn’t be able to – I just know that we were sitting
there because I was giving them names of different surveys and they were saying
that is not on our list. I don’t know how the list of surveys or data systems
—

MS. BLAKELY: Let us know. Yes, just let us know. There are surveys that we
are using already for objectives?

DR. QUEEN: There are surveys that are including this new data element that
would address the objective. It is not counted because it is not in the list of
data systems for Health People.

MS. BLAKELY: That is what we are hashing out now. Is the objective too
narrow?

DR. COHEN: This is actually a follow up on this conversation about gender
identity. I think the tension between developing objectives where data
currently exists versus evaluating objectives independently is an important
conversation. Even though Health People 2020 is designed to be a federal
program, its value at the local level probably exceeds its value at the federal
level.

Just because data aren’t currently collected or envisioned to be collected
by the feds doesn’t mean there aren’t potential data sources available at local
levels. For instance, there are lots of folks working in social networks and
loneliness, whether NHIS adopts those modules or questions or field testing is
kind of not relevant to the potential usefulness of these data for people on
the ground. This is a plea to not totally be focused on data availability as
part of the decision to adopt and think creatively about important quality of
life measures that are emerging.

I know there is a tension between if data don’t exist, then what is the
value of the measure? Just because the feds haven’t adopted an approach to
collect the data doesn’t mean there aren’t alternatives to generate that
information.

MS. BLAKELY: If we gave you all of the objectives, then no one would fight
for the data collection. Show us the data.

DR. COHEN: I understand that tension. I deal with it all the time.

DR. GREEN: Carter, we were very, very fortunate you were willing and able to
do this. Thank you for sharing the time with us. Everyone, again, remember you
know how to reach her. Let’s continue to welcome any opportunity, particularly
around our themes. This committee shares this thematic idea about figuring out
how to use data at the community/local level to help communities learn how to
be healthy. The territory you covered is just completely dead center of our
wheelhouse right now. It was very nice of you to be here.

MS. BLAKELY: Thank you very much.

DR. GREEN: So we will take a break. We will start promptly at 11:30 a.m. We
will wrap this up at five after twelve or something like that.

(Break)

Agenda Item: Strategic Discussion and NCVHS
Involvement

MS. JACKSON: We just wanted you to take a gander. We sent you a link.
Nothing is functional and drop down yet, but at least you get an idea of what
we are trying to do. I think there was a comment made earlier that websites are
to bury things. We don’t want that to happen with our website. We want to be
more forthcoming and open and out. We just have that as a backdrop as we are
going through the last part of the meeting.

MS. KANAAN: I don’t imagine you are planning to talk about this today, but I
just wanted to say that I have been involved a little bit with the staff on
this. We really have been thinking in ways that I think are consistent with the
way the Committee is developing, which is to focus on topic areas rather than
on bodies of work being done by subcommittees. We may want to carry that even
further.

The topics that we have below the slideshow there may need to be revisited a
little bit, like whether quality should be involved. There are kind of nuances
like that that I think are still open to discussion.

DR. GREEN: Having personally filed complaints from time to time with trying
to work with a NCVHS electronic site of some sort, I feel compelled to say that
when we got the link I played with this for about half an hour and really
enjoyed it. I want to express appreciation for this.

We are going to proceed apace here. First of all, these bulleted items under
11:15, could we just get updates about the conference and the Public Health Law
Conference.

MS. JACKSON: The National Center on Health Statistics has a National
Conference on Health Statistics. We still don’t have a date in August, but they
are still considering our panel presentation for the community learning system
for health. We are working through that with Tamara and others. There is a
committee that reviews the entire conference overlay. We have always had an
input and had a panel that is usually very well received so I would be
surprised if we didn’t make it. I will give you updates as that goes along. I
just wanted to inform you of that.

DR. COHEN: Debbie, I thought that panel was rejected.

MS. JACKSON: We have several.

DR. FRANCIS: This is a request. Sally, I think, probably knows a bit more
about it even than I do. It is before the – there is a network for public
health law. Denise Chrysler is the point person for that. They want to have a
– basically a workshop that is the day before APHA.

MS. MILAM: It is the day before the Network for Public Health Law
Conference. They are holding a workshop, a full-day workshop focusing on data
use with a lot of privacy tracks. There are also a number of data and privacy
tracks throughout the conference. One track will focus specifically on
connecting the dots between law and population health data disclosure and how
you make that work with the various techniques.

Denise Chrysler was part of our roundtable. We are one of – because of
that introduction at the Healthcare Authority, we are one of five host sites
for the Visiting Attorney Fellow with the Robert Wood Johnson Foundation –
Victor Richardson, West Virginia. Part of the interest for the Healthcare
Authority site would be for the visiting attorney there to participate at our
NCHVS meeting. You will meet Victor in June. He will be coming with me and
participating on the phone and bringing back to the committee the results of
his research and the benefits from his participation in that national
fellowship.

The request – we have had this request for six months really was
whether NCVHS would want to co-sponsor the pre-conference, focusing on data
sharing the day before the conference, as we did in Utah.

DR. GREEN: Can I have guidance about what co-sponsor means?

MS. MILAM: Well, in Utah, it meant traveling the Committee members and
lending its name. I don’t know, Leslie, what else?

DR. FRANCIS: Basically, many of the presentations came from committee
members.

MR. SCANLON: We have our lawyers interpret that as a formal kind of an
arrangement. Either a co-sponsor or there is some other name – co-sponsor,
they are very sensitive about the use of the HHS logo and looking like we are
endorsing things. Let me check with the Council’s Office and see in what way we
can – it would be the equivalent of co-sponsoring, but there are some
limitations of what we can do. Would that be – I will let you know. There
is another term they use.

MS. MILAM: That would be great. I would also ask that everybody check out
the link on this agenda, too, and evaluate whether participation at this
conference would be beneficial in your role at NCVHS or otherwise. There is
information as well on the pre-conference. It looks like it will be a really
rich discussion.

DR. GREEN: I am confident that the Committee members recognize the
pertinence of this. It looks like an opportunity to pursue. Does this really
require a formal action of some sort or can we just reach a consensus that we
want to see this happen and we will talk to Jim about what the right language
is to participate in some way? We will get it on our to-do list.

MS. MILAM: Thank you. We will need to know pretty soon. They keep following
up with me because they are at the point of finalizing their material on the
conference.

DR. FRANCIS: I think probably what we would need to go ahead with pretty
quickly is knowing that people would be able to travel if they wanted – I
don’t think that – maybe the name is critical, too, but traveling to and
participating in are clearly we have to know ASAP.

DR. BLEWETT: What is the name of the conference? I am sorry.

MS. MILAM: Network for Public Health Law Annual Conference. It is in
October. It is in Atlanta.

DR. GREEN: We put this bullet other here to allow other committee members to
– are there other meetings or conferences going on that we need to know
about?

DR. SUAREZ: Maybe some of you know already there is, this year,
Implementation of Public Health Informatics Conference. CDC has been organizing
a public health informatics conference every year for a number of years. They
stopped a couple of years ago. Now, they are starting again. The meeting will
be actually at the end of April, April 30th and May 1st
and 2nd.

This is an event that really links public health, public health statistics,
population health, health IT, standards. I just wanted to make sure everybody
was aware of it. It is part of what used to be called PHIN, Public Health
Information or Informatics Network. It is all embedded in that effort, but it
is primarily a public health informatics national conference. There are about
2,000 people who attend. It is going to be in Atlanta April 30th,
May 1st and 2nd. It would be – the program is
already out. I happen to be a member of the committee and will be in two or
three sessions. I will be there personally.

DR. GREEN: So I think we want to put it on Debbie’s work list of things
coming down. We want to put this conference on there and say that Walter is
going to take the conference over and turn it to good use and come back with a
report of success.

DR. COHEN: Michelle just informed me that they are going to be doing a demo
of the connectivity of vital statistics and IT, a connect-a-thon at this son of
PHIN. I would encourage if any of us are going to definitely check this out.

DR. GREEN: Maybe we should adopt as a new habit of the heart for NCVHS is
that if you are going to a meeting that has anything to do with data to check
in with anyone to see if someone else is going so you can have a subcommittee
meeting.

DR. SUAREZ: I have just one more quick item. I just wanted to acknowledge
here in the Committee a change that we had in our subcommittee. As you all
remember, we are being supported by a staff person assigned by CMS. She has
moved to another responsibility. We have been assigned a new staff lead person
from CMS. I just wanted to acknowledge her.

Her inauguration in our subcommittee was to first help draft the HIPAA
report and secondly, organize the hearing that we just had. That was quite an
inauguration for her. I wanted to acknowledge and recognize here. It is Teri.
Teri, if you want to stand up.

(Applause)

DR. MAYS: The American Public Health Association meeting is going to be in
November in New Orleans. I kind of chatted with Ob because, of course, that is
where he is. I know I am going. I don’t know if others are going. That is where
we had a very successful presentation last time in Boston. I think the issue is
if people are interested I could see, again, whether or not there was a panel.
I don’t know who else is going or who wants to go, but we have great fit with
that group.

I think we had nice turnout, good questions, and in that one we were working
with Claudia Grossman from the Institute of Medicine. I think it really was
useful for us to get our message out. If there is some interest, Ob said he
would be interested in doing something. I am going. You are going. We may have
it. Okay. We will have a little chit chat then about whether we want to see if
we can get an invited panel. At this point, the individual submissions have
gone in, but it would be a matter like we did before. I actually went to one of
the divisions and they accepted it. Okay, good.

DR. GREEN: I do not want to rehash what we did yesterday at this point. I
think that was wrestled to paper. We saw it. We had consensus that that is what
we wanted to do, but I would like to ask each of the co-chairs if in the
interval there is anything else we need to call to Debbie’s attention about
future work?

DR. FRANCIS: Just to say we have already got plans. I might alert everybody
on the subcommittee. Janine is going to be sending out a Doodle Poll for a
couple of calls.

DR. SUAREZ: Ditto with the Standards Subcommittee. I was going to ask
Marietta to send us a poll for various meetings we have between now and June.

DR. STEAD: Larry, a point of clarity. My sense of what you said towards the
end of yesterday was that you wanted to have an early call of the Executive
Committee to think through how we take what our aggressive plans – their
alignment will turn into competition if they are not somehow aligned. In many
ways, my sense is we need some sort of plan of the whole. Is that in your court
to make happen?

DR. GREEN: I did not ask him to say this, Debbie. Let’s talk about that
next. I will just blurt some stuff out for you to fix and repair. We need an
Executive Subcommittee meeting as soon as it can be scheduled.

Agenda items for that meeting would, I think, first and foremost be to ask
Debbie and our staff to basically create what I would call a table that
incorporates everything that we agreed to yesterday afternoon, sequences it,
lays it out over time for the next 12-18 months. I tend to call those types of
things our deliverables. What are our deliverables going to be? Name them. Put
them on the table. Next to them say who is responsible for this. Next to that
put who is going to staff it? Next to that say when is it due? That type of
basically a management table that will let us know. She would bring that to the
Executive Subcommittee for adjudication.

Now, I have heard from five of you now with this message: how in the world
are we going to get all of this done? We have more to do than the members,
themselves, have time to do, et cetera, et cetera, et cetera. That is really
the business of that call is to make judgments about feasibility and
plausibility. I suggest that we not let go of the aspirations. We just manage
those aspirations and spread them out over time.

We are going to need on that call some judgment about things that need to
happen sooner than later and things that happen before something else happens
– the sequencing sort of thing. I would suggest that we, first of all,
burden Debbie with that and that she brings forward to the Executive
Subcommittee such a draft proposal and we decide that then and that becomes
– some of you who have been here longer recall that Debbie, for years, at
the end of the agenda book, would keep a running history of the what the
working group was planning on doing and when stuff was coming. You could look
at where we had been and where we were going. It continues that tradition.

Now, let’s talk further about the agenda for that call. The working group
will meet this afternoon. I am assuming that we can see what we would consider
their proposed product. I need your guidance about whether or not – what
is the approval process for them moving on with that. I think one possibility
is that that is the final vetting of it before it come to the full committee
for a vote to be sent to the Secretary.

Then we could create a way – my preference would be to not say and that
has to wait until our June meeting. I think we want to get that out of here and
get it on its way. How would you like to see that happen, Leslie?

DR. FRANCIS: I thought the idea of having a virtual committee meeting was a
great one. We probably need to schedule that now. It should be, roughly –
my personal guess is it ought to be halfway, roughly halfway between now and
the June meeting.

DR. SUAREZ: It should include not just one item. For that virtual full
committee meeting, there should be more than just one action item, maybe just
one more, at least.

DR. GREEN: I wanted to be responsive and follow up on the issue you raised
about the way we have stuff stacked up it is like we need a fifth meeting. I
would like to label this the response to that. That we would actually create a
fifth meeting, a virtual meeting. Does that work for you?

DR. SUAREZ: I don’t get that. What do you mean?

DR. GREEN: I forget when it was, but you raised the possibility that the
workload and the stuff that we needed to get done, instead of four meetings, we
needed a fifth meeting.

DR. SUAREZ: Oh, yes.

DR. GREEN: This is basically the creation of a fifth virtual meeting that we
are talking about doing. I wanted to get the sense as a committee about your
receptivity to that about halfway between now and the June meeting.

We would put an Executive Subcommittee in between now and that meeting. One
of the agenda items there would be to vet that letter and have it ready to go,
get it out, get it posted, et cetera. We would have a different agenda for this
virtual meeting.

DR. WALKER: I would like to propose a different workflow for the letter. I
think – my guess is that the Committee would be happy to, in principle,
regard the workgroup’s work today as final. I would propose that they send it
out to all of us, give us a week to respond with anything we think is
important, but they look at the responses, decide if any of them change their
opinion about what needs to be done and if not, we just send it.

DR. GREEN: Is there a second for that?

DR. FRANCIS: Second. I worry about the public meeting question.

DR. COHEN: Point of order, does the public need to have a look at the final
version?

MR. SCANLON: I think we need to learn to work virtually here. In HHS, we
don’t call a meeting to review every document. We send it around for comment.
If there is a concurrence more or less, we deal with it that way. If you want a
formal vote, bring it back to the Executive Committee. We are not going to be
able to have public meetings if we are planning the process we are planning.

DR. GREEN: I am hearing you speak in favor of that motion. I heard you call
to question. All in favor? All opposed?

MS. JACKSON: Is there discussion?

DR. FRANCIS: I am abstaining because I do want – Maya is not here. I
would want at least reassurance that it is okay.

DR. GREEN: The motion is to distribute this to everyone. Everyone is going
to see this letter and have a defined time period in which to respond. We send
that back. You are deputizing —

DR. WALKER: I am happy to add an Executive Committee vote if that is
considered open.

DR. SUAREZ: We are not having an interim meeting anymore?

DR. FRANCIS: Here is my only concern. To the best of my knowledge, in no
version has the letter been available publicly until – what was it? –
its last night on the agenda.

DR. GREEN: We can take care of that.

DR. FRANCIS: I abstained from that vote because I want to make sure that
whatever is the appropriate public process for a FACA happens.

MR. SCANLON: We can post it on the website. Again, there are ways to do this
that are not necessarily the formal way we do it. It will be legally correct.

MS. JACKSON: I follow the lead of the Department, but I would need to have
something in the written record somewhere where the full committee took an
action, at what point, and where was the public notified and informed of the
material that is going out. Just as we are going through process, we just want
to be as clear as possible on that.

DR. MAYS: Can I make a suggestion that when it is sent out to the full
committee – I mean, I thought the letter was public as of now. If not,
when it is sent out to the full committee, the full committee is going to be
given a week, the public can be given a week at the same time. It means all of
the comments are collected at the same time. We can close the period
officially, receive the comments, and have a vote.

DR. GREEN: Let me offer an interpretation of the motion that you just
approved. At that point in time, I am going to sign this letter. If it looks to
me like it is not materially different or substantially departed in a direction
that you did not review and see today, et cetera, and that you didn’t have the
chance – when your comments come back in if you are still saying this
looks okay to us, we will proceed apace. If you divide up into six camps and
there are 13 things that you think are wrong with the letter, the letter will
not go forward.

MR. SCANLON: We just have to be flexible.

DR. GREEN: Is that an okay interpretation? Are you comfortable with that?

DR. MAYS: I just want to make sure that camps has a high bar. It is not
comments.

DR. GREEN: So what would you like to add? What would you like to say?

DR. MAYS: No, I am just saying to make sure that our interpretation of we
have split into camps is a high bar, not just that people are commenting. The
way we talk with each other is we are clear about making our —

DR. CARR: We have done this many times before. We will work on it today. We
will get it into final form. We will send it to Larry, who will make sure it
gets to the whole committee. We will give a week for comments. We will take the
comments back. We will make a judgment. The Executive Subcommittee will make a
judgment as to whether there are substantive comments or not. If there are not
substantive comments —

DR. WALKER: As a matter of procedure, I would recommend it be the Executive
Committee and not any individual.

DR. GREEN: Although as the Chairman of the Committee, I reserve the right to
not sign anything I don’t understand.

MR. SCANLON: Absolutely. We would not recommend that you sign something you
don’t understand.

MS. JACKSON: So the full committee vote occurs when?

DR. CARR: Why don’t we send it out and say please indicate your approval and
you may append any additional comments for consideration? If we have not enough
approval, we will just keep working.

MS. MILAM: Do we need to vote today to sort of sanction the process so we
get the vote in the Committee now as amended by you, Larry?

DR. GREEN: I thought that is what we just did. That is the process we would
use to get this letter out.

DR. STEAD: We approved the process, not the letter.

MR. SCANLON: Which is fine. That is what we needed. The Committee decided to
go this way.

DR. GREEN: We will adhere to the process that you just approved to get this
letter out. Jim, are you okay? It was your motion.

DR. WALKER: Yes, absolutely. I welcome that as a friendly amendment. Maybe
we should revote just so it is really clear that we voted on this.

DR. CARR: We are going to edit the letter in the workgroup today. We will
then send it to the Chair and acting Executive Secretary, who will distribute
it to the Full Committee. The Full Committee will have an opportunity to
indicate any suggestions. It won’t be a vote. Just send back your comments. At
that point, we will have an Executive Subcommittee session where we will review
the comments that came back and whether we have incorporated them or not and we
will make a decision as to whether it needs more work or is ready to go.

DR. COHEN: So the point it is sent to the Full Committee, it will be
available for public comment as well.

DR. GREEN: Is there a second to that?

DR. MAYS: Second.

DR. GREEN: Further discussion? All in favor? All opposed? All abstaining? We
picked up an abstention vote.

DR. FRANCIS: We’ve got public.

DR. GREEN: Back to the Executive Subcommittee, Cole will have that letter. I
am asking Debbie and Justine to bring to that Executive Subcommittee call a
process map for how we will process and work with products from the working
group to give ourselves a map and to particularly articulate the question and
issue that this committee will be asked to address when we see something coming
from the workgroup, what is our role and responsibility when that letter comes?

I feel like we learned a ton by this first time ever process. Nothing like
just trying to make something happen to find out what you need to do to make it
work better. I appreciate all of your tolerance on that. I think that is all I
have in my list for that Executive Subcommittee call. Anyone else want
something else on that?

At that call, we will plan the virtual meeting. Everyone comes from
anticipating that that will exist. If you have work that needs to be done at
the virtual meeting, that will be the time to put it on the agenda.

DR. GOSS: Larry, is there a need to start figuring out some dates sooner
than later about a virtual meeting. I know I am scheduling stuff into 2015.

DR. GREEN: Yes. We want to start this this afternoon. Expect calendar
requests for this sort of thing.

Another piece of business. When we discovered that Bill Scanlon would not be
able to make this meeting, we said good bye to Bill. Paul is in the same class
and the same situation. Paul made the meeting, but I still feel compelled to
formally thank Paul for years of service and acknowledge what he has done. We
are not going to miss him quite as much as I thought we would because in a
moment of inspiration, he agreed to join the working group.

(Applause.)

DR. GREEN: As you know, the working group members – you know, it is a
public meeting. You are invited. We have been really happy and pleased that two
or three or four working group members have been able to come to these
meetings. Chris’s comments this morning were very helpful. Paul is being
relieved of membership, but he is still where we can reach him.

MR. SCANLON: He is on four other committees.

DR. GREEN: Another piece of business, Justine, you are going to be changing
your status down the road here. Do you want to announce what is going on there?

DR. CARR: I am stepping down as Chair of the workgroup and leaving the
Committee in June. I have a very able successor in Vickie as Chair of the
Workgroup. I love this committee and I love coming here, but actually I have to
implement ICD10 and Meaningful Use for 2,700 doctors in 11 hospitals.

DR. SUAREZ: There is always something, right?

DR. CARR: Yes. There is always something. This is a little more than
something. I think, obviously, that is one consideration. The second is that we
have really had a tremendous learning with the workgroup. I think that there is
some nuts and bolts of how you get a group of people together. That is
something that I know something about.

I think that the real excitement of this committee is going to come from
leadership that is in that space. Vickie has been a fabulous participant in
that and really understands so many different aspects of it. I feel strongly
that the success of that committee will be driven by the capacity of the chair
to be informed of all that is going on and be able to integrate the many
different voices. Vickie does that all the time at the meetings. I really defer
to her expertise. I think it is phase II. I think it will be really good.

DR. GREEN: When does this take effect?

DR. CARR: June. I will be here for the June meeting. We will partner up over
the next couple of months and map out the road ahead.

DR. GREEN: Vickie any rebuttals or responses to that?

DR. MAYS: Trying to follow in Justine’s footsteps is a challenge. I am going
to do my best to live up to that. I think that this is a very exciting
workgroup. I always beg can I attend, can I attend, even though I wasn’t on it.
I loved being there. I think it is a great group. I think that Justine has done
a tremendous job of bringing together a group that often is a difficult group
to get to sit in meetings. They like to be virtual quite often. I am thrilled
to work with them. I am going to turn to Justine for some guidance, in terms of
the transition and hope that I can do the next transition as well as she did
the first one.

DR. GREEN: We want to thank you for doing this.

DR. CARR: One thing I learned over my ten and a half years here has been the
richness of the people around the room. Even though we very often come at
things from a different perspective – I think the workgroup, in
particular, was unschooled in FACAs and government and so on, but as always
proves true, the pearls of wisdom are there. I think it is the privilege of the
chair of any of these groups to listen carefully and to weave together this
tapestry of richness. I have learned so much from doing that. I will miss
everybody.

MR. SCANLON: Can I say thanks on the Department’s behalf? Justine had ten
years on the Full Committee. Paul has at least eight, I think. Two full terms,
Paul? We are very grateful. You have both been wonderful members. We hope we
will keep in touch with you through the workgroup. The Secretary has letters
and certificates of appreciation for both of you and for Bill Scanlon. We
really appreciated all of your work here as well.

Vickie told me earlier that her training in psychology will stand her in
good stead.

DR. GREEN: From where I sit, we have sort of completed a rotation cycle of
this committee that started about a year ago and working more and more as a
committee as a whole.

I want to re-issue something that I have said several times before. I would
so appreciate your suggestions for the conduct of the meeting from the
grandiose to the granule. You let the discussions go on too long. You should
cut the discussion off sooner. You cut the discussion off just as it is getting
good. Whatever it is it is very useful. I would welcome your emailing me or
Debbie. Email him and tell him how the meeting needs to be changed. I want the
meeting to be successful and to be satisfying to each of you. If you give me
feedback, I will attempt to be responsive to it.

If you will indulge me, I would like to do what we have done several times
before. I would like to run the table and just invite everyone to say a few
words except for Lynn Blewett. I really misbehaved that at her first meeting we
never introduced her. It occurred to me that maybe before we adjourn, we
should. I ask her if she would just be willing to say a few more words that
would help all the rest of you know her and understand her.

My apologies for really inverting everything here. You go first. Just say a
little bit more about who you are and how you came to be here. Then we will
just keep coming around here and ask each of you for final comments.

DR. BLEWETT: I don’t know if I can do enough that you will understand me. So
I am at the University of Minnesota. I have a research center. It is very much
– has been focused on access and health insurance coverage. I was talking
to Chris during the break. What we do is really translate a lot of the federal
data around insurance and access and we provide that information to the states
in terms of state health policy.

We have worked with every federal agency that collects information on health
insurance coverage, access to care, barriers to care. We are kind of the TA
provider to states around those specific issues. It is primarily funded by the
Robert Wood Johnson Foundation.

That is why I am trying to get my hand around like the discussion about
localities. We do that. I know Chris does a lot of that work. Not funded by the
federal government, but funded by foundation support and by states, themselves.
We do survey work for the states around coverage and access, primarily because
the federal government wasn’t meeting their data needs. States continue to do
their own survey work. We kind of translate between the feds and the states
around health insurance coverage and access.

It is a very narrow scope of public health in the world. Even with that
narrow scope, it is a lot. There is a lot of methods and survey methods and how
do you measure and did it really go down and what does this survey say and that
survey say. We have been at this for over 10 probably close to 15 years now.

I have worked out in D.C. and made connections when I was younger. I was
kind of a Hill staffer. I think I met Marjorie way back when during those days.
I served on the Board of Scientific Advisories for NCHS. Then Jim and Mike
Millman, who I work with, got me involved in this committee work.

It is a little bit off my regular kind of more survey data methods area,
which is really what I served on for NCVHS, but it is really good for me. I am
in the School of Public Health. I teach in the Masters of Public Health and
grad students and have PhD students. It is good for me to get bigger picture
and think broader about what I do and how I do it.

I will just mention another project that I have had for about ten years. It
is called the Integrated Health Interview Survey. We have taken the National
Health Interview Survey and we have harmonized it and made it web accessible
– so 30 years of National Health Interview Survey data. This is funded by
the National Institute of Child Health Development. Again, it is another part
of the federal government funding NHIS to become accessible to researchers and
people. It is interesting because it is a different part of the federal
government that is funding NCHS – for us to do the work for NCHS.

It is very cool. I would be happy to do a presentation someday. You can
basically just click on what years you want, what data elements you want, and
download the dataset for researchers. It is primarily a research tool. I am in
the business of accessing data for both research and policy for purposes,
mostly on the state level. That is why I have been – I always say I am
barking at the heels of the feds to get better state data. Maybe I will be
doing that for local data.

MR. BURKE: The early efforts of blending our work in three committees into
one I think is with us today. It was with our today. I think our success in the
future will be not forcing that to happen, but seeing it evolve naturally. When
we look at a product we will see a very blended set of recommendations or
observations without separate paragraphs for what has historically been
different groups of opinion.

DR. MAYS: Usually, we do it with just a few words. The first one is
excitement for lots of levels and in terms of what is to come, what has come.
The other is content. Usually, there is something that – you know, there
are kind of those tensions. It is like this time we worked as such a group of
the whole that I am walking out feeling very content with the way in which our
process went. That is unusual for me.

DR. GREEN: I am going to leave now.

(Laughter)

DR. STEAD: I second Vickie’s comment. I want to put on the table a request I
mentioned briefly to you yesterday. As part of the framework work, I have been
reading the IOM 2011 report, For the Public’s Health: The Role of Measurement
in Action and Accountability. It’s first recommendation was that the Secretary
of HHS transform the mission of NCHS to provide leadership to a renewed
population health information system through enhanced coordination, new
capabilities, better integration of determinants of health.

As I have read through this whole thing and you look at – it is all
aligned with what we have all been talking about. Your periodic passionate
calls for who is responsible and how are we going to have the infrastructure, I
think much of that is really laid out quite well here, I suspect with quite a
lot of input from the National Center. I think it would be useful to have a
formal report to this committee at one upcoming meeting on what has the
response been and what would this National Center like to do going forward in
this line. Would that be a fair thing to spin us up on?

MR. SCANLON: I think we can have Charlie come and talk about the future, in
terms of that.

DR. STEAD: And try to actually use this as a frame. It would give us a way
of sort of saying where do we stand on the landscape.

MR. SCANLON: Well, it is the focal point. If you want to be designated the
nation’s general purpose health statistics agency, you have to do that. There
is always a funding issue. I think part of this is just looking broadly. I
think Charlie, as the new director, would be welcome to hear some views. As I
said before, some folks regard NCHS as the National Center for Federal Health
Statistics. Others have said you should be the Center for National Health
Statistics, which would be more resources and more folks. Where else would you
do it? It is just an obvious place. We will get Charlie.

DR. COHEN: So as always, this is just a mind expanding meeting. It is going
to take me a while to try to synthesize it. For me, the dynamic vision is
emerging. The way I would summarize it is Data Liberation 2.0, redesigning data
dissemination infrastructure to engage user communities. Data Liberation 1.0
was getting data outta there. We have an opportunity to really redesign
infrastructure to make – the two keywords this morning were useful and
usable. This is our chance to make a difference.

MR. SCANLON: So first was just reflection on we are doing what we have
always wanted the Committee to do. So again, I think we are in the role of
integrating at a framework level of – we go from very specific sorts of
issues to integrating and, again, I think that is where we are. Number two is
we have to learn to be nimble while we do all of our formal processes. Number
three, I continue to be thankful and amazed at all of the very productive work
and the insight that everyone gains when you get smart people together and ask
them to advise us and others, when you start that interplay.

MS. JACKSON: My word is supported. Things that were indicated that I would
have a project to do and laying out graphs, I am looking over at Catherine and
Tamara and Marietta and Nicole and Janine. Everyone has been right there as
part of the village. Anyone whose name I missed, thanks for helping me get
through this first one.

DR. SUAREZ: I think it has been, as always, an overwhelming three days. It
feels more like a whole month. I think a couple messages. One is for those that
thought that HIPAA was something of the past, welcome to today. We are really
facing some very significant, important challenges and opportunities this year
with respect to the things that are happening. I think – I don’t want to
say HIPAA 2.0 to go in the theme of Data Liberation 2.0, but I think,
certainly, we are going to continue to see this as part of our reality.

I think the opportunity really is to continue to really pursue better
alignment and better coordination across all of these interesting mandates. I
think we have started to identify some places where there are different sources
of mandates that attack on the same exact issue from different angles. If there
is an opportunity to continue to find these types of issues and work them
through – so that is the first message is really HIPAA is here and will
continue to be here.

The second one is really the message that I have been bringing to as many
places as I can, which is population health management is the future – is
the present and is really more also the future. I think the more we can do to
try to incorporate and bring better integration between the clinical world and
the population health and population health and public health – and this
is a committee that has a really unique position to help do that – I think
that will be really a fantastic new opportunity for us.

I think with those two messages, I will stop there.

DR. GOSS: Lots of great comments so far that I agree with. It underscores
what I would like to offer, which is that there have been lots of thread of
commonality, which are coming together to give us clarity on our vision to get
to our path of convergence with an ongoing and overwhelming sense of resource
strain and the need to really address that in our effective agenda management.

DR. CARR: My word is inspired. I am inspired by the people, the vision, and
the fortitude.

DR. FRANCIS: My word are continuity and change, a kind of make new friends
and keep the old among not only data, but also processes and ultimately
achievements.

MS. MILAM: This meeting for me felt kind of like a brainstorming session.
There was a lot of excitement, a lot of really fertile discussion, and a lot of
passion. We had some good sort of roadmaps, if you will. We just had Bruce’s
mission statement that I think is helpful. We have Jim’s guidance in figuring
out who our customers are. We have Debbie offering to do some project
management for us.

I think all that boils down to is working smarter, really figuring out that
what we want to do and we want to do a lot of things. We have talked about all
of that for the past couple of days. We can’t do it all. We have to figure out
what means the most to the people we are offering a product to. Is it the most
timely, efficient use of resources? How do we do that together?

I think we have learned a lot from working as a committee of the whole. I
think it will continue. If we move forward with the framework project that
takes joint input. It also seems to me that we may have the need for concurrent
sessions of deeper dives, more intense work with smaller groups of people that
may require new structure. I think we may need to figure out use of time in
different ways, possibly, even within the same full committee meeting where you
pull people together differently. I think it is going to be exciting. I am
looking forward to seeing what the Executive Committee comes up with.

DR. TANG: My two words are diversity and learning. I think that really
characterizes what I get out of each and every meeting. Because of the
diversity of viewpoints, knowledge, expertise, I get a lot. I think that
contributes to the characteristic NCVHS product, which is vision and insight.
For that reason, like Sally, I think the working together has created a little
more cacophony at the beginning, but that diversity enriches the product. I
think it has been useful.

DR. FULCHER: Thank you very much for inviting me here. This is my second
meeting and the first meeting I actually heard you, which is wonderful. I have
learned so much over the past couple of days.

DR. GREEN: Chris, most people don’t say that.

DR. FULCHER: It has been a wonderful opportunity really to listen to the
rigor that this group brings to the table here around data. I just wrote a
couple of notes because I don’t want to just go on and on. NCVHS really may be
in a unique position to not only address HHS data, but a broader suite of data
as it relates to health and healthy communities. We brought up the word
wellness. I think this group has all of the elements of really thinking more
broadly around wellness and community health and not just around health data
and clinical data, et cetera.

The last part I really, really resonated with is about that missing
infrastructure thing that you brought up, Larry. There is a missing
infrastructure. We talk about public health informatics, but from a community
perspective, it is almost like the Ag extension that you mentioned – I am
housed in the College of Agriculture. Brick and mortar is key. Websites have
been living and working in the world of virtual websites and data. I really
appreciated the need for brick and mortar and face-to-face discussion around
decision making. The web can only go so far and data can only go so far. An
infrastructure, maybe a Carnegie Library approach, reinvigorated around
informatics, community informatics is so powerful.

I very much appreciated the time here. I guess the two key words, one is
about alignment. We don’t have as much in terms of resources as we did before.
Alignment is key not just in terms of resources, but the opportunity to think
together. Not two words, let’s just leave it at one, alignment.

DR. WALKER: So my three words are cognitive work analysis. I am really
excited about understanding better, personally and as a group, the amazing work
that is being done out in communities all across the country, understanding
better what the tasks are that those people need to accomplish, what the
questions are that they need at least help with answering, and how we can
support them.

DR. GREEN: You know that I like to collect quotes during meetings. I am
going to quote Jim Walker twice as my comments. I really was – it struck
me when Jim said what communities don’t want is a toolkit. They want a
solution. I also was taken when he said I regard websites as a good place to
hide stuff. Safe travels. Good working group meeting this afternoon. Be well.
Be on the phone with you soon.

(Whereupon, the meeting adjourned at 12:30 p.m.)