[This Transcript is Unedited]
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
Joint Meeting of
Subcommittee on Population Health
Subcommittee on Privacy, Confidentiality, and Security
Subcommittee on Standards
Joint Roundtable on
Health Data Needs for Community Driven Change
May 2, 2013
National Center for Health Statistics
3311 Toledo Road
Hyattsville, MD 20782
Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030
(703) 266-8402
TABLE OF CONTENTS
- Welcome – Leslie Francis, Co-chair, Privacy, Confidentiality & Security
- Review and refine options for potential committee action/
draft a specific plan and timetable for carrying out the work.
P R O C E E D I N G S (9:04 a.m.)
DR. FRANCIS: Welcome to this third session. I thought we ought to just go
around briefly and say who is here and then who is on the phone. Where is the
phone? Is the phone set up for people to call in? Okay, great. Why don’t we
just say who is here for our own benefit and the people on the phone?
MS. ZAPPIA: I am Barbara Zappia from the Greater Rochester Health
Foundation.
MS. CHRYSLER: Denise Chrysler from the Network for Public Health Law.
DR. FULCHER: Chris Fulcher, Center for Applied Research and Environmental
Systems, Columbia, Missouri.
MS. JACKSON: Debbie Jackson, National Center for Health Statistics,
committee staff.
DR. FITZMAURICE: Michael Fitzmaurice, Agency for Healthcare Research and
Quality.
MR. BURKE: Jack Burke, member of the committee.
MS. JON PAUL: Tammara Jon Paul, CDC NCHS.
MS. WEBSTER: Kassi Webster with NCHS.
MS. KLOSS: Linda Kloss, member of the Committee.
DR. FRANCIS: Leslie Francis, member of the Committee.
MS. MILAM: Sallie Milam, member of the Committee.
DR. COHEN: Bruce Cohen, member of the Committee.
DR. MAYS: Vickie Mays, member of the Committee.
MS. KHAN: Hetty Khan, CDC, NCHS staff, and the Subcommittee on Privacy
Confidentiality and Security.
DR. CORNEILIUS: Llewellyn Cornelius, member of the Full Committee.
DR. GREEN: Larry Green, member of the Committee, no conflicts.
MS. KANAAN: Susan Kanaan, writer for the committee.
DR. NICHOLS: Len Nichols, member of the Committee.
DR. TANG: Paul Tang, member of the Committee, Palo Alto Medical Foundation.
MS. BOHM: Good morning. This is Michelle Bohm with CDC Epidemiology and
Analysis Program Office.
DR. FRANCIS: What we are going to do, Michelle, I don’t know if you have a
copy of all the draft recommendations that came out from last night. It is
being sent to you now. There are several others in the audience, I guess, that
maybe want to come up and join us at the table. Do I see Susan back there?
DR. QUEEN: Susan Queen, staff.
Agenda Item: Review and refine options for potential
committee action/ draft a specific plan and timetable for carrying out the
work.
DR. FRANCIS: Here is the plan. Have a look at the list that is in front of
you or that was sent to you. Take about five minutes to circle three that you
believe would benefit from our further discussion this morning, given that we
are going to move to a work plan. The idea is to pick three that you think we
need to talk about more, to understand or to understand what to do.
Then, we are going to go around and people are going to name one, and we are
going to see where we are. We may have enough out of that, but then, we might,
so you ought to pick your number one. Then, if somebody else has already
mentioned it, you could say that and then a second one, okay?
DR. GREEN: Leslie, we are trying to figure out where we are and figure out
how we are going to go forward. I want to restate my responsibility in this
process is to help you manage the process, and to get to the products and
deliverables on time. I want to remind everyone that we spent last fall laying
out the steps that we go through as we do this. I wanted to just take a moment
to position where we are this morning in our overall process, to help people
see where we are going.
We have an initiation that we called scoping the task. We have done that. We
wouldn’t be here otherwise. We have gotten through that. We are in study and
preparation phases here, and I am just going to actually read the bullets and
sequencing here, so you can see right where we are.
The subcommittee workgroup holds open hearings, reviews literature, has
discussions of the topic. There is open discussion by the subcommittee
workgroup on whether or not a letter or a report, or some other product, will
be brought forward to the full committee for consideration, including findings
and any possible recommendations. We are really right at the bullet point right
now. What comes next is an initial draft of a letter or report is produced
under the guidance of the subcommittee workgroup co-chairs for review. That
happens virtually through email.
I just want us to be crystal clear that we are still up at the front end of
this work. That is where we are now. We need to have full discussions of this
that set this up. We are assuming that basically you guys sitting there, going
to oversee this with some of the staff that is sitting here. One of the things
we need to know is who that staff is and who is going to have the work
assignments.
DR. FRANCIS: I should add that one of the things we were assuming is that an
initial product will be a report of what has happened here, main themes, that
we would be going back and forth with all the people who were here. We are
taking that for granted, so nobody needs to say that. I hope that is okay.
DR. GREEN: I think what we need to do is say that, just like you just did.
MS. GREENBERG: We have already communicated with Susan about doing that.
DR. GREEN: The first product is a report, from which we might derive.
DR. FRANCIS: It would basically be a summary of the meeting, something like
an executive summary of the meeting.
DR. GREEN: Is there another written product like some other sort of
formalized report or something, or is that not decided yet?
DR. FRANCIS: The question about other written products, what they might look
like, what kind of staff they might involve, is the goal of at least some
tentative discussion about what all of that might look like, is the goal of
this morning in the second half.
MS. GREENBERG: Is Justine on the phone?
DR. CARR: I am.
DR. FRANCIS: You should have been sent the list that was compiled last
night, heroically by Linda. What we have here is this list, and we are asking
everybody to pick three that you think we need to talk about more with this
group assembled so that we can know more what we want to do, by way of a work
plan. We are then going to go around and everybody is going to get to name
their top one of that. Then, we will devote the rest of the first half of the
morning to that discussion.
DR. CARR: Great. I did that actually myself as I read through these things.
Thank you for sending me all the handouts.
MS. GREENBERG: I can’t resist a comment. As I look around the room, I would
have to think that the recommendations of the blue group resonated the most.
Three of the four of their co-chairs are wearing blue.
(Laughter)
MS. KANAAN: Leslie, is it acceptable, and would it work in
the process, to identify a sort of thematic bucket as one’s choice? For
example, technical assistance for communities, rather than exactly the wording
as it is here.
DR. FRANCIS: You could pull together a couple of them. The issue to think
about, I mean, we had some conversation about whether we wanted this to be your
top priority for us to do. We thought it would be better not to pose the
question that way, but to pose the question as, what do we need to have some
further discussion about that will inform what we then decide to do, taking
advantage of who we have here right now.
MS. GREENBERG: You have got yellow here, one red and then it goes back to
yellow. All right.
MS. KLOSS: There was one observation that the blue group kind of went off
the model. You will find all the blue group recommendations, but I had to make
a decision about where to place them.
MS. GREENBERG: We have recommendations for communities, but they are not
with that.
(Pause to look at paper)
MS. GREENBERG: I just wanted to point out that seven, eight and nine, under
recommendations for government, were actually the blue group’s recommendation
for community.
DR. FRANCIS: I am going to set my timer on five right now.
(Pause to read paper)
DR. EDWARDS: On the blue group, the health statistics modernization act
actually is a standalone recommendation.
DR. FRANCIS: The question is, what do you think would benefit from further
discussion at this meeting, given the brain trust that we have here? We are
taking five minutes to do that. We are going to go around and each person is
going to get to name one. It could be a bucket that pulls together a couple of
themes.
MS. GREENBERG: One for each category or just one?
DR. FRANCIS: No, just one. What we want to be able to do is figure out where
we should spend our discussion time together this morning, with an eye that the
assumption is we are going to be producing the initial product of this is going
to be a report that is a summary of the themes and discussion, a kind of
executive summary.
Then, there are going to be next steps. We really want people to hold their
minds open about what those next steps might look like, whether they are going
to be a letter to the Secretary, whether they are going to be a report, those
are possible kinds of things. Like this committee did a secondary uses, or I
should call them data reuse, report at one point a few years ago.
We also are hoping that, at least for now, we can be a little bit agnostic
about what the resources are that would be needed to do this kind of thing. We
know that is hard, but one of the things to do would be then to think about
what we might need by way of staff and other resources, if something is a top
priority.
For those of you who just came in, what we are doing is going around and
looking at topics that we think would benefit from further discussion before we
turn to working out a work plan. I am just going to start with Barbara down
there at the far end of the table. When we get halfway there, I will go to
people on the phone, and then we will keep going. I want people to name one. It
doesn’t have to be a priority. We want this to be, what could we talk more
about in the next hour, harnessing the expertise of this group? Barbara?
MS. ZAPPIA: I put things in a bucket, identifying and refining resources for
finding and collecting data at the community level.
DR. FRANCIS: Identifying and finding resources for collecting data at the
community level. Denise?
MS. CHRYSLER: Health statistics modernization act.
DR. BREEN: Can people say where they are, because I would like to take a
little note. I am not sure where the one that Barbara said she wanted to
discuss is.
DR. FRANCIS: Some of them are buckets, so there is not a single one.
MS. CHYSLER: Mine is recommendations to the government under blue.
DR. FULCHER: I think it is really around number six, encourage academic
institutions or provider organizations to reevaluate co-ownership of joint
projects. I think there’s a lot of alignment opportunities with these
organizations. It is just that they are all working separately and often
overlap.
DR. FRANCIS: Denise, do you want me to come back to you?
DR. FITZMAURICE: Number two on page five, it says standards development
organizations, but more incentivized communities to collaborate on the use of
common formats for health data categories to promote uniformity,
interoperability and harmonization.
DR. FRANCIS: Which one is that?
DR. FITZMAURICE: Number two on page five.
MR. BURKE: I bucketed under the broad category of collaboration, in
particular on page two, yellow number two, and others to talk about working
with existing entities that have special skills.
MS. PAUL: Again.
MR. BURKE: The bucket is collaboration, the key entry is on page two, yellow
two.
PARTICIPANT: Partner with evolving NGO intermediary.
MR. BURKE: And as an extension of that, academic institutions, provider
organizations, partnering with others rather than talking among ourselves,
MS. PAUL: This is on blue, page three, number five, reduce
cross-jurisdictional challenges with data exchange and collection. That was
page three, number five, under blue.
MS. GREENBERG: It is sort of a problem when people are just giving the
numbers.
MS. PAUL: It is reduce cross-jurisdictional challenges with data exchange
and collection.
MS. GREENBERG: On page three. I have been thinking about it like all night,
even in my sleep. If what we are talking about is what needs further
discussion, it is definitely this Health Statistics Modernization Act that came
out of our group, because it resonated with a lot of people, but before the
committee could come forward with a recommendation like that, it would require
a lot more investigation and teasing out, et cetera.
DR. FITZMAURICE: Does it exist, Health Statistics Modernization Act?
MS. GREENBERG: No. Denise Love and or group – that there should be one.
But it relates to the one that, if you want a bucket, it relates to many of the
others here. It is to address the fact that our current policies aren’t aligned
with our current technology and needs and –.
MS. MILAM: Could I ask a clarifying question. Referring to the bullet on
page three, number one, as the Health Statistics Modernization Act, but it is
really up under number one, the AG extension model. My question is, are we
pulling in the AG extension model when we have that reference, or is that
something separate?
MS. GREENBERG: That would be my number one priority but I think that
probably Nancy Breen is right, that although we put it under that, it should be
its own.
DR. FRANCIS: It should be its own. Now the question that I think those of us
on the subcommittees, when we were thinking about this session, maybe this
could be something to think about is, are there pieces of that, that are
accomplishable without an act? That might be something for us to devote some
really serious discussion to, as a further discussion. Identify what the
problems are that would lead to you wanting an act because it may be that some
of those are pieces that are solvable without an act.
MS. WEBSTER: I have to echo what Jack said about collaboration. That was
something that stood out to me when I was looking at these, coordinate,
collaborate and communicate, especially with those non-governmental
organizations that are doing great work. That can help the governmental levels
to know where the needs are, what is already out there, where can we better
coordinate to work better together.
DR. FRANCIS: I have a big bucket cluster, which is how can the federal
government help be an informational clearinghouse on who are partners, where
are the data in communities, what are communities doing, what are best
practices, and what are the kinds of technical support that are needed? I just
had a big bucket on those.
I said I would call on the phone. Justine?
DR. CARR: Can you just email me or text me what you just said, because I
think regardless of the outcome of this, the Workgroup on HHS Data and Access
can certainly be a part of what you just put forward. If you could send me
that.
DR. FRANCIS: I will make sure that gets emailed to you.
DR. CARR: Mine, far and away, is health statistics modernization, thinking
both about the data and the uses of the data, and actually consumer engagement
around the data.
DR. SONDIK: One thing that I don’t see here is I don’t see really emphasis
on the use of the data or training.
DR. CARR: I just sent a summary to everyone. The health statistics
modernization I would see as data where the types of data, the availability,
the integrity, the small group data, and then, uses of the data, reuse,
repurposing, consent, sensitivity, alignment of state and federal rules,
expectations of data regarding certainty or uncertainty.
DR. FRANCIS: Sallie, it is your turn.
MS. MILAM: I am lumping several of these together in a privacy stewardship
bucket. Page four, yellow three, which indicates that NCVHS should identify
potential partners to work with on pursuing the issues and stewardship
recommendations to address those concerns. I add to it blue number three,
looking at population health privacy, particularly in the area of disclosure.
Add the number four, have some best practices and recommendations for how a
population health data holder goes about effectuating what is required in the
law, and pushing out as much data as possible.
DR. COHEN: I don’t want to call it a bucket list, but it is sort of a
bucket. It gets to, I think, what Ed and Justine were talking about. Mine was
the feds with data intermediaries should develop and disseminate one standard
definitions for indicators and data sets, two guidance for qualitative data
collection, and three, useful small area estimation techniques for community
use. It is a combination of like seven different things.
Disseminate is really important here. There is a lot of development that
goes on, but less attention is paid to disseminating in ways people can
understand. Two, I think this is a hugely underdeveloped area that communities
need guidance on.
DR. FRANCIS: Ed, you wanted to make a comment.
DR. SONDIK: I feel like I shouldn’t have the floor because I didn’t pay my
dues yesterday. I am, I guess, looking at this sort of with two different hats.
One hat is the data hat, okay, and I think this represents that. The other hat
is the analyst or the public health practitioner, or the operations research
hat, whatever.
In that, I think the emphasis for me is less on getting the data, but trying
to figure out what to do with it. Resource allocation, modeling, what is it
really telling us what to do with all the other new sources of data that are
coming down the line. When I said training before, it is one thing to train the
people to get the data. The other is to train people to use it.
In my experience, there is a real gap here. Some of the new activities are
that people, Chris and company, are doing. They are developing these tools that
help people do this. What I don’t see is I don’t see the curricula changing to
really say, you know, this is sort of a new world of epidemiology analysis,
whatever. I would see this as really important to this, particularly, you know,
when it says to support data enabled community-health. It is one thing to have
the data, but it is another thing to know how to cook with it.
DR. FRANCIS: Vickie?
DR. MAYS: Page three, number nine, I want to discuss that because I think
there is a whole different way of approaching data that is not about the ology.
MS. KHAN: Page five, number five, it is under blue.
DR. MAYS: Develop a definition of emotional well-being and quality of life
for healthy people 2020.
MS. KHAN: Page five under the blue section, number five. I think I am
tagging onto Bruce when he said he talked about the tools for data. Set of
tools for sharing data at the level discussed in 4302, age, race, ethnicity,
primary language, gender, and provide guidance and small area estimates.
DR. CORNELIUS: The item I am happy to share with you about is the issue that
talks about how the government should require that the community needs
assessment should be community-driven. I will repeat that after I say the
number and the page. That is on page two, number six.
DR. GREEN: The things I think we need to discuss the most that are on the
table. What I want to do is offer a bucket for this to come into. We need to
discuss modernizing health statistics. We need to figure out how an extension
model of workforce development, this office of science innovation, would fit
together, how do we pull that together into something that is coherent.
MS. KANAAN: A bucket I would like to put on the table, and there were a
number of recommendations which I won’t identify, technical assistance,
coaching and new tools for communities. That includes an identification of
potential partners and resources. It is a big bucket, and there are a lot of
things that we discussed yesterday that fall into it. There are a lot of things
that we discussed yesterday that fall into it.
DR. NICHOLS: Page two, I want to combine five and seven. Improve
coordination and collaboration of federal data-related services, including
technical assistance, and supports for communities, making full use of ACA CHNA
requirements. Then, number seven, seek ways to provide and present data in ways
that show the gaps and make the information actionable, meet the community
where it is. I have a PowerPoint to summarize all of this, if we can figure out
how to get it up there. I can show you in two minutes.
DR. FRANCIS: Paul?
DR. TANG: I am very interested in finding the problem to be solved and who
is to solve it. That is why the definition of the community, which is page one,
number one, is important to me. I think all we are talking about requires us to
know who is the community, because that is how you know what is of interest to
them. Eventually, they are going to be the effective arm of this.
DR. BREEN: I think the things on the table are really important. What I add
to it is both defining the community, our group, I am in the yellow group,
spent some time on that, so that would be recommendation yellow on page one,
yellow one, context, who are we talking about and we talked about the
community.
We thought it would be good to use the definition that is in our book that
we already published. Maybe that is a bit too lofty, in what we have already
published in the communities as a learning system. In that, it had to do with
shared interests and emphasis on a geographic frame, a particular place.
Along with that, we started talking about a continuum of communities, that
communities might be somewhere along a continuum of maybe readiness for change,
and that we would need to meet the communities wherever they are along that
continuum. I don’t think such a continuum actually exists. I would like to
know, from this group, if they know of such a continuum. I mean, is there a
theoretical framework?
There is for individuals, but I am not sure there is for communities. That
might be something that we would want to consider maybe outside this group or
inside this group. I think it may be important, in terms of appropriately
communicating with communities, and helping the federal government and state
governments, and people who generalize and think about the big picture to be
most helpful, because that is one of the things we struggled with in our group
quite a lot is sort of how do you speak appropriately to communities?
Communities are all very different.
DR. QUEEN: I would say the health statistics modernization, I don’t know
whether it would be an act or not, that would include the spectrum of training,
workforce, also tools, analytics dissemination, the whole gamut.
DR. EDWARDS: I like the concept of health statistics modernization act.
Under that, I think there need to be requirements that all funded studies
include a community translation component that results in effectuating change.
I also that that should incorporate legal or regulatory harmonization, which
addresses, I think, many of the things that Sallie and some others raised. I
won’t go any further.
Then, I would add to that it should also include creating incentives for
using data to improve health and community outcomes, so that anything that is
funded should also have an incentive component, so that we are not just
collecting the data, but people are incentivized to actually use it. Therefore,
there has to be the translation component, so that the data can be used in a
reasonable way.
MS. KLOSS: One of my number ones was the community definition and
consideration of developing a continuum. I will just add a star here.
DR. FRANCIS: Let me ask if there is anyone else on the phone. We are not
going to go around again, because there is no way we have time.
DR. VAUGHAN: I endorse a bucket approach that Larry and Susan have both
touched upon, and that is to build a cross-cutting ecosystem policies and
programs that would support in expanding capacity for analysis research
dissemination, and link that to improve outcomes. I would seat that in the
health version of the agricultural extension. I think that builds to the health
statistics modernization in both its collection and structure and
dissemination, and then the office of community science innovation at the White
House.
MS. BRADLEY: I would like to include a framework for repurposing of data,
from its original collection purposes.
MS. LOVE: Well, I started this, but I go with the act, and I mean that in
the comprehensive way, whatever that act turns out to be, the modernization
because it is a comprehensive approach, as long as it brings in the local,
state, federal and the whole piece of action.
DR. FRANCIS: Maybe the place for us to start, because the goal of this was,
where do we need more discussion. Maybe the place to start would be to talk
more about what people envision health statistics modernization as being about
that we haven’t already said.
One of our questions is going to be, are there pieces of it that could be
done by this committee that don’t require dealing with Congress, that could be
done as recommendations or a report from this committee that could then be done
by the department now. Let’s spend about 10 or 15 minutes talking about that,
because that was clearly a high priority.
MS. GREENBERG: Can I ask for one clarification from Linda? Because when one
person said about the continuum, that the community needing a continuum, I
thought they were talking about communities within communities, et cetera. She
was really talking about a continuum of where the communities are in their
process, and that is what you were talking about, too?
DR. FRANCIS: The next question I thought we were going to devote a little
time to, it is exactly the one about communities. We could start with that, if
people would rather?
MS. KLOSS: Three things really surfaced with the most health statistics, the
collaborative and getting at more actionable definition of unity that may
involve being able to develop assessment tools and other mechanisms that we
reported on yesterday.
DR. FRANCIS: Why don’t we start for a few minutes.
DR. MAYS: When we were talking about the health modernization, I think it
has many aspects. I wouldn’t want us to prematurely close off the Congressional
part of it, because that can be as simple as asking for a budget increase, for
example.
It is a simple ask. I mean, there are things, particularly for NCHS, that
that is part of the modernization. I just don’t want us to take it off the
table. Instead, we can make it a delayed thing to do, but to really consider
what we need funding for and what we need structural change for would be
helpful.
DR. FRANCIS: Since the modernization point came out of the blue group, one
observation that we are going to just make sure is there is that it doesn’t
necessarily require a statute. It might just be money or it might be action by
HHS. That could include money. Sallie is going to facilitate this one, because
it came out of the blue group. We have got 15 minutes and I am setting my
timer.
MS. MILAM: What I thought we might do is just begin with sort of a
description of what it is. Denise Love, within the blue group, generated the
idea. I thought we would start with Denise. I see other hands are raised, and
we will get to those. Let’s just start with that, so we can bring the rest of
the group into the conversation a little more fully.
MS. LOVE: I want to say it didn’t just come from me. This comes from NASFASe
and states. Some of the things we have identified out on the field really need
more than a piecemeal approach, more than reports. When I think of
modernization act, I think of just what do we need to propel us to the next 20
years. It comes about that we don’t have a workforce capable of doing that in
the public sector, and probably not anywhere else, so that data scientist
curriculum. What is a curriculum that local, state, and other health department
community assessment professionals need as a common core. It is not EPI and it
is not just statistics. There is something else that doesn’t exist. This is a
workforce sort of training.
Along with the modernization, our ways of sharing data are broken. They do
not work for the next 10, 20 years. That means new tools, new laws maybe, but
new ways to streamline the data exchange and sharing. I am just a witness to
what is happening is working in pieces of the system, but it is not a very
efficient way to do it. Community groups get frustrated.
Then, I think new approaches and models of data, what is the effective
distributed data models on population health? I am really concerned. I don’t
think we have really grappled with that, that can a distributed model where the
data is queried in their little safe boxes and health plans, that is not going
to help a state today. Maybe there are new models we need to understand.
It really, to me, seems an all-encompassing sort of framework. It does have
a key component of workforce, because tools change, technology changes, HIT
changes. It will change and change. The workforce has to be nimble and they
have to be prepared. I love the people I work with out there, and there is some
great talent, but we don’t have a curriculum to propel us to where we need to
go. I don’t know if that is what you were looking for.
MS. MILAM: There is a lot of interest, so we are going to run the table. We
will start at this end. Leah, your tent is not up, that is Lily’s, is that
right?
MS. BRADLEY: I think one place that we might be able to start is to build
off of the secretary’s priorities that she laid out in her plan for 2010 to
2015. There are approximately 70 to 75 measures that are quantified. I think if
we could, at the very least, update those on a closer to real-time basis, that
that could help communities.
There is sort of this need for people to, I think even at the local level,
to acknowledge what these are, to try to work towards them, as well. I have a
spreadsheet that sort of shows you what they are, if that is helpful. They are
good, it is like increase the number of young adults, aged 19 to 25, who are
covered as a dependent on their parents’ employer-sponsored insurance policy.
They are achievable things. I think at a local community, you could target
appropriately.
MS. MILAM: Lily, where are these published? What are these?
MS. BRADLEY: These are on the Secretary Sibelius’ website. There is a
strategic planning process, we are going through it again right now. It is not
an adjustable format online, which is part of this point that we need to enable
people to really look at data in a meaningful way, put it into spreadsheets
that people can manipulate. On the website, you can’t do something quickly and
meaningful with it.
MS. CHRYSLER: The piece of health statistics modernization that spoke to me,
and Denise Love has always quotable quotes, which is our ways of sharing data
are broken. The way I like to look at law is first, what is it you would like
to do, really we need to do, that you can’t do? Then, you go back and say, is
there existing law that allows us to do that, and how do we get there to do it,
because it may be too narrow of an interpretation, it may be not knowing about
these other laws, you need to read with this law.
Always, before you jump and think you need a new law, go back and visit the
old ones. Before you do that, you have got to know what feels broken, and then,
is there a way we can use current law to fix that. I really like the little
piece. My second thing was get privacy lawyers and EPIs together, because that
is a piece of how can we use our current law better.
DR. FITZMAURICE: Denise and Ed triggered some thoughts in my mind. Do we
know what local communities use the data for? For example, what decisions are
made at the community level, and what data are required to inform those
decisions? Then, where does the federal responsibility lie for supporting these
community decisions? Maybe it is everybody, but then, how does coordinate it?
Is it associations? Does NCVHS play a role in it?
I am not sure that I understand fully what the decisions made at the local
area need data for. I am not saying they don’t need data, I am saying I don’t
understand the decisions that a mayor, a county executive would make that
requires data. Obviously, it is how do you allocate your scarce public health
resources, et cetera. There is a whole gamut that deals with sewage quality,
that deals with crime, and all of these impact health.
MS. GREENBERG: I would like to go back to things the committee has already
talked about and done, to see if it could shine some light on areas that we are
looking at now, because many issues just come back in a different form. In
thinking about this, and it totally resonates with quite a few people, and yet,
I agree that it would be very premature, as I said, I think for the committee
to come out and say, we need new legislation. We might in some areas, but I
think the people that have spoken have already indicated that a lot of it might
not need legislation or it might just need resources, or it might need
approaches or new regulations. We do know, as hard as it is, it is easier to
change regulations than to pass laws.
I had to think of the 21st century vision for health statistics.
Clearly, we are guided in our community work by the vision, the schema, about
all the influences on health. There were a whole set of recommendations in
there about, given the title, vision for health statistics, about health
statistics. Now, that was about 11 or 12 years ago. I would say that they went
over like a pregnant pole vaulter. When you are close to retirement, you can
talk that way. They were dead on arrival. We need to look at them, and some of
them may be outmoded.
Others, and I will say this is self-serving because several of them looked
to an enhanced role for NCHS. It really addressed, I think, maybe in an
old-fashioned way, because we weren’t even at all into the social media era or
whatever. It addressed the fragmentation, the lack of coordination,
collaboration among federal agencies at the department level and more broadly,
with states and localities, sharing data, training. Really, there were a whole
suite of recommendations.
I was hoping to get here early. Instead, I was a little late because they
have cordoned off part of the garage, if anyone is parked there. I mean, you
can get in there, but it is complicated. I didn’t, but somebody may have that
report. No, you have got a different report.
DR. FRANCIS: We have five minutes and six people.
MS. GREENBERG: In any event, I think we need to go back and see what is in
there.
DR. COHEN: I would like to think about this as a pathway to modernization.
What are the tracts on the pathway to modernization? The three paths that I
think need to be pursued simultaneously are, one, issues around data sharing
and dissemination, both the legal issues of transfer of information, and a
whole new way of getting disseminating our information in useful ways to
communities, including social media. What is apparent to me is communities
don’t understand what data exists, because we haven’t been doing a really good
job of selling this and publicizing it. That is one, data sharing and
dissemination.
Two, training for data collection and analysis. That has been discussed. We
need to revamp the workforce. Everybody is part of the workforce, all of the
community, all analysis, we need to liberate the data in the sense of not
giving people more access, but having people understand how to actually use the
information that they get.
The third area pathway that we need to pursue is the issue of measures and
measurement. We need to move beyond the usual suspects in public health, and go
from a disease-oriented model, incorporate issues of housing, economics,
community development, as part of the basic.
DR. MAYS: Mine is on modernization, and the way I want to approach is
thinking about the things that would really enhance the community’s use. First,
I want to talk about training. How to use these data sets, what different words
mean, what is absolute versus relative, so that not only do they use the data
better, but they have the capacity that, when we put it out in other forms to
understand it better. I am looking for, like, online kind of little webinars
and YouTubes and things like that.
The second thing is really thinking about having a policy that whenever a
report, you know, CDC has these briefs. Whenever briefs, and even the MMWR and
things like that, roll out, that you have a video. The journals are starting to
do that now where you can do a little video around what the high points are in
your articles. Those would be my two suggestions.
DR. TANG: When I heard the term, health statistics modernization act, I
didn’t think of it as repackaging and selling old data through new distribution
channels, which is what I am sort of hearing some of what is being said. I
thought of the goal as leveraging the new world of data and new audiences for
the data. The goal for that is to align ourselves with the current needs and
the new sources of data to create synergy and (?) 57:36 for action.
New sources of data that have never been available before include EHR data,
we have said that. I have a caveat to that. They include continuous online
acquisition of data from real-time citizens, i.e. PHRs, personal health
records, patient portals. We already have engaged those. In our practice, it is
more than three-quarters.
All of the NCHS surveys are carefully conducted. We need to have a carefully
selected representative group for which we get this real-time feed, and even
train them on what it is, how do you take this survey, how do you consider
these questions, how do you deliver more precise answers that we need. Think of
it as a cohort, Harris Interactive has something like that, not with the rigor.
MS. MILAM: We have four more folks. Can we have one thought from each of you
then?
DR. BREEN: There are multiple kinds of data, and what is striking today at
this meeting, I think, was that not only survey data, medical records,
including EHRs and administrative data, which we have traditionally used,
though we haven’t always incorporated them and synthesized them too well, but
we now have, I will call it big data, the online information medical marketing,
Facebook, all of those sources of data.
I think we need to think about how to integrate all these types and sources
of data for analytical purposes. Then, we need to train and underline employ
workforce to do this.
DR. EDWARDS: I am going to ditto Paul and Nancy, and say that I think goals
and recommendations should be bold and audacious. The reason that we want to
call it, whether it becomes one or not, the health statistics modernization
act, is that we can call attention to the fact that we have not transformed our
rules and regulations to meet the current capacity of collecting and
distributing data, using technology. We have not transformed our curriculum or
trained our workforce to effectively use the resources that are available in
this century.
Whether a law or rule already exists, I completely agree with Denise C. on
this side. We don’t want to create a new law that just replicates an old law.
If you call it a recommendation for a modernization act, it will force people
to figure out what we already have and create congruence and fill in the gaps
where it is necessary.
If we simply try to just do our own gap fillers, and cutting and pasting and
band-aiding, we won’t get to the landing zone, which is a transformation of how
we think about these things, and how we socialize the community to effectively
collaborate and coordinate across different verticals. My recommendation is we
actually make a recommendation that is bold and audacious, and back into
whether or not it needs to be dwindled down.
DR. VAUGHAN: Part of the modernization would be to also proactively
restructure how we are documenting and publishing the data for different types
of users. That the structures of the data themselves have to be far more
scalable and interoperable. That local health departments, to pick up a couple
of others’ observations, are both flooded in data deserts. They do use and need
data for day-to-day decisions.
Some of that is encompassed in broader social determinants of health, but
they need the data. They are generating data, they often can’t get into pockets
of conversation with their cities, with counties and counties with states.
Perhaps there is a federal role for breaking through some of that.
That there, in fact, are all these other data sources that impact health, or
at least impact the policies around health. In using GIS terms, those need to
be ground troops what we know already. Some of that is around social
determinants, some of that is social media. Then, often commercial so-called
big data, that is being promoted as being about health, but may or may not be.
DR. FRANCIS: A wonderful richness of health data modernization. I apologize
for cutting people off, but we are actually almost at 10:15, which is
supposedly the halfway point of where we are. Maybe we could take a couple of
comments on the defining community. I don’t know, I think there are lots of
different kinds of communities. I am not sure what the future is in coming up
with one definition.
Maybe if people could comment on what they think might be helpful for the
committee to be working on or be understanding about communities and community
differences, that might be helpful. Just take a couple of minutes on that.
Then, the other big bucket kind of theme that I heard a lot of was the
coordination role, collaboration role, and take a few minutes on that.
DR. COHEN: We will start right here.
DR. GREEN: NIH struggled with this mightily for the last five years. There
are formal reports about this issue. We should not reinvent this. We have a
definition that we revetted here in the last two days and it is still standing.
MS. KANAAN: I think if we acknowledge and integrate into our thinking and
our work the basic reality that communities are varied, and that there is a
continuum, and perhaps if we, at some point, spend some time being more
systematic and analytical about what that means, that we will have accomplished
what we really need here. Then, we can be thinking about different, more
targeted types of communities.
I agree with those who feel that it would not be a good use of our time to
try to come up with the generalized field vary.
DR. NICHOLS: Having been prevented from offering a generalized field theory,
I will just say the word that hit me, just still talking about the rats, that
is what I thought about last night. Anyway, the concept, authentic community,
which I believe was self-defined.
I would just say, and this is just clearly a shameless segue into the next
section, when we get to collaboration, we have got to take self-definition into
account to make it actionable.
DR. EDWARDS: I also thought about this a lot last night. I think the word,
community, and the definition that has been presented and published is a good
one. Oftentimes, we use the word community when we mean collective.
Particularly when you are talking about data, you are talking about lumping
some information together, because that is what data is, it is information that
represents a collective body, collective thought, collective geography,
collective demography. Oftentimes, we use community when we really mean
collective. If we want to be really picky, we could be semantical.
My other thought here, at the risk of never being invited back again, is
that I was a PMI, presidential management intern. I was invited to come and
learn about how to be government. They forced me to go through a bunch of
classes on how to speak plain English and all this great stuff.
I left the government and went into the community. I think we should have a
reverse process, where people who work in the federal government for a certain
amount of time, are forced to go and work in the community, and then come back,
because what is happening is that you are forgetting what is happening in the
field. Great stuff is happening. We are not deficient. We are not in lack or in
want.
Christopher and I can both speak to the great work we are doing with data,
data we collect, data we find, data we create. The problem, or the challenge,
is there is a disparity in terms of access and capacity to use that data
effectively. That is what I think is the most critical piece, is filling the
gap for those communities who don’t have a Chris or a Carladenise or a Vickie,
who can help them use the information that is available. I think you should do
a reverse sabbatical or a reverse internship, and get some of the smart people
in this room to out in the field and help people.
DR. FULCHER: Bruce, thank you for sharing that definition yesterday. As I
read over it, it is the best definition I have read over. I don’t want to
modify or think beyond that definition, but I would propose that, as we use
that definition to engage communities, it is a starting point for refining the
community, refining the geographic extent. It is much more of a process
approach to really honing in on saying, this is the general definition. Then,
what does this mean within our context, and get the community’s perspective
around that, and who else needs to be at the table, et cetera.
I think it is a great definition. I think it also includes inherently the
concerns that Sharona had yesterday. I am not sure that she actually read
through that, but I saw her concerns in that definition covered.
DR. SONDIK: Could you repeat that definition, brief? At the risk of being
too analytic about community, I can see that this starts off with people. There
is another way to look at it, which is a little more analytic, I think, which
is in a way complementary to this. You think of it in terms of what the issue
is.
In looking at some issues, you can address those with data from a small
number of people. There are others where you can’t do that, you need a much
larger, quote, community. In some cases, the community can be the US. In some
cases, for surveillance people, the community goes beyond the shores of the US.
It is an entirely different thing. People who are flying on planes or whatever.
I think that one thing to crank into this is the problem or the issue that
is being addressed. I think that should be part of what we think of when we
talk about community.
DR. COHEN: I think the definition includes that possibility and it was
written in a way that could be both specific and expansive around issue-based
communities.
DR. FRANCIS: We are out of time.
MS. GREENBERG: Again, no commitments and I don’t know if it is possible,
until we can really send the federal peasants out into the countryside —
DR. BREEN: Think of it as AG extension, rather than the Chinese model,
Marjorie.
MS. GREENBERG: I have thought about that myself, too, as long as it is not
forcible. We have talked, and I know Vickie has suggested that we needed a real
community representative on the committee. Certainly, we could enhance, I mean,
we always have openings and we could think about that.
We have some people now, and we have identified people both through this
workshop, but over the past two years. A few of them are already on the HHS
data access and use working group. I really think we should talk with Jim
Scanlon and the Office of the Chief Technology officer, et cetera, because it
is very related to the whole idea of liberating, using data, creatively, et
cetera, of having perhaps a workgroup within that larger workgroup that would
advise the committee on the community health data issue.
DR. FRANCIS: One of the ideas we were talking about as subcommittee chairs
is that we might want to ask people to think about would be as part of the work
plan, some small interest groups or workgroups that would include people at
this table, but potentially others, as well.
MS. KLOSS: I just want to encapsulate the thinking of the yellow group. We
pushed beyond definition rather quickly in our discussion yesterday, and talked
more about how to use that definition in some sense of the continuum of
development, so that the work we are doing is meeting communities where they
are at.
I think part of the reason to look at this again is to try to tease out a
description, some kind of sense of continuum. As you say, we are focusing on
the communities that need our help and not others. I think it was less than
academic discussion of the definition, but how do we use that to frame action?
DR. FRANCIS: We have 10 minutes to get collaboration comments out on the
table.
DR. FRANCIS: What would it be most helpful for the committee to know?
DR. FULCHER: I thought about the words, we talk about collaboration,
partnership, alignment. Then, I started thinking about putting on my economics
hat. Really, at the heart of this, I work a lot with policymakers, with
research evaluators, technical assistant folks and practitioners, in terms of
the funding streams that we get. I think what could be very important in this
whole process, before we even get at these bigger overarching things, is a
consilience officer, or an informatics person, that helps as part of every
funding stream that comes through, that we ensure that there is a level of
pulling these pieces together.
What I mean by that is, you know, my presentation yesterday around this
unified interface with community comments, with a number of different funders.
Imagine that across the country, where HHS could really propose a consilience
officer as part of a CTG process, as part of a collaboration with Robert Wood
Johnson Foundation.
There are a lot of people out there, and some of the others presented,
Andrew and Bridget, that we are all, even within RWJF, there are a lot of
people that know that they could work better together. Yet, with the program
officers, depending on whether the researchers or evaluators are policy people,
they are not putting the pieces together.
At the end of the day, it has to really go into the business mode, the
business flow of how we allocate funding from HHS and how we coordinate those
funding streams across these major foundations and NGOs. Long and short, this
word, consilience, is around unity of knowledge. It is really about ecological
thinking or systems thinking. That is what we need to be doing.
It is not about more money, it is about doing much more with the money we
have, by having people connect the dots. That is really around collaboration
and partnership. It is a deeper discussion around how we actually set up our
infrastructure around data and data sharing. Right now, we are funding a bunch
of houses that are built on sand. How do we provide this consilience framework
to have a real stable base that they can foster partnerships, can foster all of
these collaborations. Once the funding is allocated, and we have a framework
that we are doing things in a certain way, it is much harder for these
partnerships to take root and cross pollinate.
DR. CORNELIUS: I just wanted to quickly follow up on the comment of the
community sabbatical for the federal officials. I would state the obvious
mechanism, interagency personnel agreement.
DR. GREEN: Key idea, we know why collaboration doesn’t really happen. The
fundamental reason for it is no one else is willing to pay for it.
DR. FRANCIS: It is not free. Collaboration costs money. The way this ties to
our focus on communities is learning health systems is the way the country is
approaching this now is clear. The country aspects community members to
volunteer and contribute their part of the collaboration without support,
technical support, financial support, et cetera. We have got this nailed cold
in our report. It said, the country is missing a critical infrastructure. That
idea unites almost everything that has been said in the room today. We are
actually, without declaring it until this moment, talking about the nature of
the missing infrastructure and the things that have to go into it, how it has
to be done, who has to participate under what conditions. We are right on
track.
DR. NICHOLS: Picking up on that well-stated point, when I think about what
HHS does now, we produce the surveys, we compile the biostatistics. The
community health needs assessments are being constructed as we speak, and there
is all this local data which Denise can help channel. That comes into how
experts define community facts. What we have learned is that what people think
about what is going on with their rats is more important sometimes than obesity
rates. Community views, at some level, are actually the proper starting point
if we are going to start with the authentic definition of community, and
working with them where they are, or where we are maybe, sometimes.
The thing we need to invest in, which is what Larry just said, is technical
assistance and listening, and somebody was talking, I think, maybe Nancy,
capacity assessment of the communities that we could a kind of an index on who
is ready. Then, out of that, and I guess maybe there is an animation that
didn’t get conveyed, on the right-hand side, out of community facts and views,
that bracket leads to community capacity.
We should be investing in, in my opinion, is our committee should form a
subgroup to come back with a specific recommendation about how to foment this
technical assistance list and capacity assessment. That will be the
recommendation.
DR. MAYS: One of the things I think that we learned at the meeting today is
kind of some of the groups that we don’t necessarily have partnerships with. I
want to suggest two kind of areas that collaboration would be great with. One
is grant makers in health, and I think they pay their own way to things anyway.
It includes a lot of the major foundations. They are the ones that are actually
seeding and doing a lot of things in the community, and will do things at the
federal level you can’t do. I think that is one good partner.
The other is there are actually a lot more community activities and support
and funding that are happening in other parts of the government, such as
SAMHSA, HRSA and the Office of Minority Health. I think those are three
partners that, in general, think about whether we can get them to the table as
regular participants the way that we have NIH.
Then, my final comment would be, I know that Bob Kaplan’s schedule is just
really busy. Maybe if we could also talk to Bob and see if he can’t be here, if
he can have a representative. Because again, what we are talking about is
changing the way some things work. I think having those individuals at the
table, like in terms of SAMHSA and HRSA, they have a very deep community
network. They could spread things quite quickly, could do a poll for you quite
quickly, even in terms of getting information about community attitudes towards
some of the things that we often are struggling to bring people in, they can do
it. They have a monthly call with their community groups. They let people be
on, to ask questions.
I think we should think about these, because that is where the change comes
that we don’t have to carry all the burden to make it happen.
DR. FRANCIS: Do you want to have a quick last word, Susan, and then we are
going to go on break.
MS. KANAAN: This bounces off of what Vickie just said. I am reminded of a
conversation that Bruce and I had on the way here, which is just, big question,
who is not at the table right now that needs to be at the table?
DR. FRANCIS: Okay. We are going to take a 10-minute break. We will be back
here at not quite 20 of.
(Brief recess)
DR. FRANCIS: We have an hour, so let’s get going because last but not least
is working out a work plan, or at least the start of a work plan. Sallie is
going to lead us in this.
MS. MILAM: All right. We are at quarter until 11:00. We have about an hour
left. We had some discussion during the break, that we would shape the work
plan into three large buckets or initiatives. One is really what Len put
together on the screen, technical assistance, listening and capacity
assessment. Our second large area is the health statistics modernization act,
and our third area is stewardship follow on work. We also identified that
bucket over there about collaboration as really being woven throughout the
three. I propose that we divide our remaining time into chunks of 20 minutes
for each, and Leslie, if you could help us with timing that would be great.
To sort of frame the whole thing, remember what it is that this committee
does. It issues reports and letters, recommendations to the secretary. We know
that a lot of people read this work and we can influence change. The secretary
is our primary target. Our recommendations need to be actionable. They need to
be within the bandwidth and sweet spot of NCVHS. With that, I would like to
start with the first one, as represented on the PowerPoint screen. Len’s
concept up there of technical assistance, listening and capacity assessment for
communities.
Let’s first start with making sure we understand what this initiative is,
what is the goal. What is it that we think that we want to achieve with that,
and then, back into how do we need to get there? Len, do you want to say a few
more words?
DR. NICHOLS: Well, I guess what I was trying to do was distill what I heard
as the gap. The left of the top, I think we do very well. We are doing better
at combining the right at the top. We now know we need to do a better job of
engaging community views and assessments, where they are from their
perspective.
I don’t think anyone said it better than Larry, the infrastructure of
delivering, I would say, not to, but with communities, what they need is what
is missing. I totally agree with Vickie. There is a tremendous amount of
private philanthropy focused on this question right now, some of which is doing
quite well, thank you very much, leave them alone.
In other places, I think it is almost like this disconnect between the rats
and what the professionals show up and say, well, let’s talk about your EDUs. I
just think it would be a completely valid allocation of our resources to form a
little group, and that is all I would suggest today, form a group to work
between now and June on making recommendations to the secretary about how
departmental resources could be refocused. It is much smaller bore than health
statistics modernization act. It is much more about implementation. Given what
I would apprise, for what it is worth of the current political realities, there
is no way in hell there is more money coming soon. It is going to have to be
within existing budget constraints.
That is why I think it really comes down to almost like an R&D effort
for the department to figure out how best to do this, which may begin by
convening those communities we know are doing darn well, thank you very much.
Larry just told me about some pursuant to the NIH work that are just doing it.
We need to make more communities aware that is going on. Then, have the federal
government figure out, and HHS specifically figure out, how it can best
catalyze, activate and create. I think of it almost like it is not unlike the
user liaison idea. Maybe that might be an analog to talk about.
Fundamentally, it was a capacity-building exercise, a making state policy
officials aware of what the federal data could do for them. Really, over time,
a constantly interactive conversation, I am again looking at you to articulate
here, about what they need and how can we help. Sometimes, pure consulting firm
like technical assistance.
MS. MILAM: Len, it is your proposal then that we develop this subgroup to
take this issue on and do research within the federal government and with
communities, to find out what those opportunities are.
DR. NICHOLS: My recommendation would be that a subgroup work between now and
the June meeting to draft a letter to the secretary on forming that activity. I
am not sure we are the right people, maybe a couple people here around this
table are. The department, I think, should be strongly encouraged to direct
these resources. This kind of thing ASPE does for a living and I think that is
what we should do.
DR. MAYS: Are you suggesting that the next action is just constructing the
letter to the secretary or are you saying we need a little bit of more
information? My concern is that some of this is done in other parts of HHS. As
an example, the Office of Minority Health, through its regional reps, has a
data policy committee. I think Susan has talked to a couple of them. I am on,
as a consultant to one in, I don’t know, region five or something. There are
some places where this is done. I would hope that if we sent a letter to the
secretary, we either can do the, I don’t know whose term it is, the shining the
light and saying that maybe you can scale this up. It may be that we need a
little more fact-finding first.
DR. NICHOLS: That would be what the process would be between now and June,
but I definitely hear you.
MS. MILAM: Vickie, you don’t think that is doable, by chance?
DR. MAYS: Well, I am wondering if it is doable by June, because we have this
work and some other. Let’s put it this way, if there is a staff person who can
help us, yes. If we have to do it kind of on our own, maybe not. I know some of
the places where the health statistics data people are and what they are doing.
Like in HRSA, it is one of my former students is the new acting chief of the
data policy branch. I know in some of the other places where they are.
DR. NICHOLS: You have just made my point. We can do this by June. Jim
Scanlon knows everything.
DR. QUEEN: I don’t know how much we could provide a comprehension view of
all that is going on in the department. There are pockets of things that are
being done, that ASPE may not always know about. They may not be couched in
terms of either the data policy. I would like to have a better picture of
exactly what would need to be accomplished, what information would need to be
gathered, prior to writing such a letter. I don’t mean a year, but it is May
2nd.
DR. NICHOLS: I admit my bias. I was at OMB, so this should not take two
months.
DR. QUEEN: Could you say again the specifics of what information you would
want to have prior?
DR. NICHOLS: My idea simply was to convene a working group, which would
include very informed departmental staff who do this all the time. That is to
say they know what is going on around the department. To inform us, as we
formulate a recommendation to the secretary about developing the capacity to do
technical assistance listing and capacity assessment of communities, with the
idea of enhancing our capacity to be catalytic to make that circle lead to
community capacity. I think it is convening three, four people we could name
and schedule it.
MS. MILAM: Let’s go to Denise and then Chris.
MS. LOVE: I just need some clarification because I heard several things. It
sounds like you want an inventory of existing resources throughout HHS, of what
is happening, just so I can crystalize it in my head.
DR. NICHOLS: Inventory is what will take a year. I am looking for examples
of what we know is going on. It is not that we have to have, for the secretary,
a 30-page memo on how to do this. We have to tell the secretary in our combined
wisdom, if we agree, that this is an agree, the department should devote
resources to building on what we know, or at least some people would assert, is
currently preforming in a similar way in order to drive to the goal of the
committee, if that is the goal of the committee, to enhance this. A
comprehensive inventory, I would agree with Susan, it will take two years to
convene the meeting.
MS. LOVE: In that technical assistance capacity, I am thinking of a couple
of models I heard out. I just need to crystalize. A users’ liaison program,
where the communities have a learning network, to come to the government, in
addition to? Because another model might be the EIS, epidemiology intelligence
service, where places, an EPI or an expert in the community, for a given two
years at the government’s expense. Would you see both? I am just trying to get
what the ask is.
DR. NICHOLS: I would just say the idea would be to enhance the capacity. I
don’t believe it is feasible to put an agricultural extension agent in every
community, budgetarily. It seems to me perfectly reasonable to, when we get to
a more rational Congress, which will happen sometime, that we could actually
have a program where communities could apply for that kind of assistance. That
would be a window that would be perfectly reasonable, building on what is going
on.
MS. MILAM: Linda is going to help us crystalize this, and then I am going to
Chris, Marjorie and Larry.
MS. KLOSS: I think we need to simplify this. I think for the work plan
purpose, all you are really saying is that you want this group to create a
charge and a description of that charge for a committee, right? Really taking
the thoughts we have gathered here and putting it in a letter that recommends
formation of such a committee with X charge.
DR. FULCHER: In working with technical assistance, I want to preface this by
data and using the word, data. It may mean something a little bit different in
the context of what you are talking about. We talk about enhancing this
technical assistance capacity. Technical assistance is about providing support
for the systems that are in place, to help people understand how to interpret
it. I think the real challenge is getting a more user-centric approach in
modifying the systems, so it makes it much easier to translate from a technical
assistance standpoint to communities.
There is a dissidence now between technical assistance and how people
perceive that. That is really a function of how our data systems and our
visualization tools and all that are presented, and that we have curriculum
built around that, that technical assistance folks have to kind of force
through and make sense of, because of the way it is originally framed. Does
that make sense? I really like the idea of the subcommittee around that, but
thinking more around the left brain, right brain thinking that goes on in
communities and how we meet them with this technical assistance approach.
DR. NICHOLS: I certainly would mean to use technical assistance if it is
going to be interpreted in that narrow way. I think of it more, just the way I
think of the term, it is more, how do I help you do what you want to do? We are
thinking the same thing.
DR. FULCHER: In order for us to help them more effectively, we really need
to change the way that we have our systems set up now.
MS. GREENBERG: I think Linda helped with this somewhat, but I don’t think
having a draft letter for actual consideration by the committee in June is
feasible or even desirable, because if that is what you were recommending,
because there really isn’t time. I mean, do we have processes we go through. If
it were an emergency, yes, we could do it. I defer to the group, if they want
to try to, the chair is here.
I think convening a group to scope this out, and to make some
recommendations to the committee at the June meeting, is definitely doable,
with the idea of maybe a letter in September.
DR. GREEN: I want to work on managing process again. We are sort of spending
our time restating the process we have already agreed to do, is what I want to
say mostly. I think we just need to stay faithful to the way we work and the
way we have agreed to work.
Where we are now is we have already completed a lot of the scoping work, and
we articulated four questions that we wanted to learn more about in the last
two days. It worked. We now have to summarize what we learned and produce that
report, and that is where you said we were headed next. That is the right thing
to do next.
Marjorie is just pointing out it is not really realistic to think that we
get from this distillation to a letter ready to be finalized in June. We have
another list of about nine bullets that we are going to go through with this
process. We can get that done.
We are on track. We are actually doing what we set out to do. We have a
habit of, at this point, feeling confused and disoriented. Who had this idea in
the first place, sort of a notion. Everyone needs to stay anchored. We are on a
journey. This committee has been on this journey for a lot of years. We are at
the next phase, it is focused on community engagement.
We are recognized, we have spotted gaps. The old health statistics are
wonderful and insufficient. They are new opportunities. They are crazy, they
need to be organized in some way. There is progress to be made. We are right on
the scent. We are learning, just need to get the next piece of the work done.
I do believe that it is realistic to actually accomplish what Len is talking
about, when he clarifies. We are not talking about an inventory where
everything is going on. That is a fool’s errand. The moment you do the
inventory and publish it, it is out of date because of the rapidity with which
stuff is happening.
We don’t want to do that. There are summary documents, such as the IOM
report on integrating primary care in public health that actually already has
some of the recommendations that we have proposed about, that are already in
there. It already has the background work done by others for a year and a half.
There is a lot of this community engagement stuff done at NIH that Vickie has
called outa gain.
I think what we can do between now and June is we can anchor, now that we
know where we are headed, in some of the latest definitive authoritative work
in publications that we have already had. Let’s not decide that we are supposed
to go redo that work. Stay on task. Linda aimed us in exactly the right
direction there. I can hear the typing behind me. She is doing her best to get
us to this report, just keep going.
MS. MILAM: Do you think we are premature if we pull that work group
together, to scope out the issue, before we get our report. Is that your
message?
DR. GREEN: It is not. I think that this is something that we do concurrently
as we are pulling this together. You pull the work group together. We could
certainly, by June, have a first draft of findings and recommendations, based
on this workshop. I don’t think we should go to the June meeting without a
summary of what we feel like we found at this workshop. The workshop’s work is
to distill from that what you think could be key important timely
recommendations, and let’s get those into play, to take the next steps with the
full committees.
MS. MILAM: We have got two work streams then with respect to this specific
issue. The report is a given. In this issue, we have got research that needs to
happen. You have indicated that there is an existing body of knowledge out
there that we may not all be aware of and maybe not have considered. I am
wondering if that could be a staff function. We have a workgroup that we want
to establish.
DR. FRANCIS: Linda and I were sitting here, thinking that this is from
several different subcommittees that maybe the population subcommittee could
take the lead in pursuing that part of it.
MS. GREENBERG: Some of the things that you have mentioned are already on the
SharePoint. We have been circulating the information about the primary care and
population health report, and documents and all of that. I know you mentioned
several times yesterday the CTSA, and we actually had a report on that in the
past, so it may have changed.
I think if you specify what it is you want staff to investigate, I need a
little more clarity on that. I think we can do what we can, working through our
liaisons. Certainly Susan knows people at SAMSHAa, she worked there for many
years. We have NIH people, we have all that. I think the first thing is maybe
to convene the smaller group by telephone maybe, and have a conversation about
this, and what you feel, again, not an inventory, I like that, a fool’s errand,
I wrote it down, what it is you need. Then, we will see how we can have it
happen.
Meanwhile, I think Susan’s first priority is obviously to get this report
done. I am sure we can have a draft by the meeting. It is my understanding we
want, I won’t call it a report, the high level summary of the meeting, which
includes today, obviously.
I would think we would want to have it reviewed by all the participants and
get their input before we finalized it, even as a summary without any
conclusions. I think we need to think of a realistic timeframe for that. At the
same time, form this subgroup. Because since there are three or four things,
you are going to need several subgroups, it sounds like.
DR. GREEN: Could we just go home with the one that brung us to this dance?
We decided as a committee that we deputize basically you four people sitting
right across there. You represent our workgroup, you are it. You are already
duly authorized.
MS. GREENBERG: I would think each one of them maybe would chair one of these
workgroups, if we have three workgroups. They should be chaired by one of those
four. They, themselves, are not the workgroup, I don’t think. And Walter, I am
sorry he couldn’t be here. He has been out of the country.
DR. GREEN: I want to underscore in terms of process, we have agreed we are
going to do this as a committee as a whole.
DR. GREENBERG: Yes, but it is harder and harder when you have got to get
everybody on the phone. Subgroups, each one chaired by one of you, I am fine
with that.
DR. COHEN: Len, I would like to work with you and Vickie, and we will see if
there are other folks on the population health subcommittee, who want to sort
of outline this idea in more detail, so we can move forward in figuring out
where we are. Are there any other volunteers here who would like to be? Lee?
Susan, since you know some of this, maybe you and Kassi can help us on this?
MS. GREENBERG: Kassi also, outreach is her area. Does anyone from the
working group want to assist?
DR. COHEN: We are set now. Also, it would be great if we could get feedback
from others who aren’t on the national committee, who are at this table. It is
not a traditional way we have done things, but I would like to incorporate the
input from the rest of the folks here. We will try to figure out how to do
that.
DR. FULCHER: I would be happy to be engaged in any way you see fit.
MS. MILAM: Before we move on to the next topic, I see two tent cards up, Ed
and Linda?
MS. KLOSS: I was going to move on to other aspects of the work plan. Why
don’t you go ahead?
DR. SONDIK: This is going to be a report to the secretary. It is a question.
MS. GREENBERG: The summary is like minutes, but more than that, thematic
summary from the meeting. Down the road, there’s letters maybe, reports, I am
not sure.
DR. SONDIK: I was going to suggest that at least a portion of the
recommendations be very few in number, and aimed at things that the department
can do to move this. I say that because I think this is really an important
topic. I am concerned that if, you know, the richness of all of this is
captured, it is going to be difficult to capture it really succinctly.
I think there are things that the department can do. That would be my plea,
is to try to get this as focused not necessarily be aimed at all the
communities, different definition of community, around the country that one
would want to be involved. Try to aim it, at least at first, at getting the
department to try to get its act and focus together on this topic. I think it
is that important.
I am concerned that if it is not there, then the department will, in effect,
wait for the rest of the country to somehow rise up and say, these are things
that we think should happen. That will take time, and who knows what will
intervene along the way.
MS. KLOSS: I think that is very good advice. As a follow-up question, do you
have any specific suggestions on areas that you think the department could best
contribute short-term?
DR. SONDIK: Since we are not being recorded or anything, for example, we
have a data council. The problem is the data council, I am kidding. This is my
last day.
(Laughter)
DR. SONDIK: We have a data council, but the Data Council really looks around
the department. It is really not looking outside. As you well know, this is
really not part of its focus and it can be.
One recommendation would be to take another look at the mandate of the data
council, or I hate to add another organizational element, but take a look at
the mandate of the data council and kind of turn it maybe inside out, so that
it works not only on coordinating and trying to do the most efficient and
non-duplicate type of data development across. It looks at the use, the impact
of this. It would mean a much more harder-working committee than we currently
have, with much deeper staff, in order to be able to make something like that
happen. That is one of the things that could happen.
Secondly, since you asked, an annual report that has to do with the state
of. I don’t know exactly how to define that state at this point. I don’t know
if it would be looking at coordination, whatever, but I think it would be
looking at things kind of like Paul brought up before, the multiple, the new
sources. Is the department making progress, is the country making progress in
all of this?
This could be an add-on to one of the annual reports. I would do it as an
annual report, that the department does an add-on. I don’t know, there is
health US and then there is data, data US or something like that, that would
focus on the use of the data, not the magnitude of it, but the use of it, and
whether it is making any kind of difference.
I think a few things that would put the department on record, an obligation
with respect to this, would be good. A link to the Office of the National
Coordinator, and not solely on people incorporating health records, but on
using electronic health records. Another piece on it that has to do with
confidentliety, issues related to that. I think there are a number of things
that could be done. The more focused it is, the more likely it is that the
department would pick up on it.
I also think someone mentioned that the need for community data, I don’t
know who said it exactly like that. I think that needs to be explored. A
handful of areas where the need is clear, because I don’t think it is so clear.
I think you can look at the decisions that are being made. A lot of these
decisions are being made by the county councils and the like, by the seat of
their pants, without the analytic tools, with minimum amounts of data.
It is almost incumbent, it is something that NCHS should do, AHRQ should do,
is look at what the value is of better data. I won’t even say more, but better
data. How that would improve health. I think it is really important to do that,
because not everybody is going to share in the value that more is better.
People are going to ask hardnosed questions. Well, what are we really going to
get from it? Why do we need any more than knowing what people are dying from in
Montgomery County?
MS. BERNSTEIN: Listening to Ed talk and thinking, boy, I really wish we had
asked you that question much earlier in my tenure as staff to this committee.
The reason for that is, you just laid out several types of recommendations,
none of which I have seen us make in eight years, kinds of tasks or kinds of
actions that the department could take, look at an existing committee and give
it a charge or something, or do an annual reporting. These are not the types of
recommendations that this committee has made in the past.
I think that kind of creative understanding of what the department can do
and what is possible is really, really helpful, because it makes the
committee’s recommendations practical and actionable and whatever. I think
often we are finding that we are frustrated. The secretary hasn’t responded to
the particular recommendations, even though we know that there is another
audience out there for the work of the committee, and that other people take
action based on them, even if the secretary doesn’t.
I think your insight as to the types of things that the department can
actually do reasonably, other than do research, send more money. I really feel
like my head just exploded. I am really happy to hear what you had to say.
DR. SONDIK: Susan can respond to this, but with respect to the data council,
or Marjorie could respond to this as well, respect to the mandate or the
prerogative of the committee, it is inappropriate, I think, for the committee
to say, this is how you should organize. In effect, that is what I have said. I
think that needs to be translated into something that fits with the
prerogatives mandate, so forth.
My point that I tried to make was I think there are things that can be done,
and that the more focused they are, still meeting the prerogatives that this
committee has, and the boundaries that the committee has, I think the better.
Otherwise, time will go on and little will happen.
MS. BERNSTEIN: All I meant to say was that we get stuck in certain routines,
both in the kinds of recommendations, but also in the way the data council
works. Yes, I wouldn’t suggest that we dictate how that works, but it opens the
possibilities for us, I think, in a way that is very useful, thank you.
MS. KLOSS: My tent card was up because I wanted to move us to another area
of work planning, now that we have got volunteers for the technical assistance
chunk. Well, it didn’t come out as a specific recommendation of priority. I
think Leslie and I feel pretty strongly that we need to do additional work to
follow on our stewardship model.
One of the new insights from this discussion has been that one of the ways
we might do that is to convene a workgroup, perhaps beyond a short-term ad hoc
workgroup, enlisting the help of certainly some of the privacy experts that
have come together with us here these last two and a half days, to help us
translate that draft model into something that is really practical and useful
for communities. Push that the next step what may end up happening from a work
plan standpoint is that we may see the need for another working meeting like
this, as a way to do it perhaps in the fall.
I would think that as a work plan, what we might want to report to the full
committee is that we are mapping this project out, and looking to hold kind of
a roundtable around the stewardship model later in the year. I will just throw
that out for discussion.
DR. FRANCIS: Let me just say a little bit more that the privacy subcommittee
as thinking we would take the lead on this side of it as the complement. In
addition, several of the kinds of issues that kept coming back, issues around
data sharing, issues around is privacy a barrier, how do we get past that,
issues around sensitive information, mental health information, and issues
around, I will just sort of call it community consent and community engagement,
were all pieces that, at one point or another, seemed to come under that. There
may be more, and I would love to hear more.
MS. GREENBERG: Is the privacy subcommittee asking if there are any other
volunteers that aren’t already on the privacy subcommittee that want to help
with this?
DR. FRANCIS: What we would love to do is first hear some discussion of what
people think about that as being our role in this or are we off base?
DR. EDWARDS: I echo those, particularly the ones around mental health and
behavioral health issues. Our group talked about that quite a bit. The other
thing I don’t think I heard you mention, but it could have been just because I
was multi-tasking, was the concept of repurposing data and information.
I think it is really important that we tackle what it actually means, the
distinction between research, experimentation, public health use, a lot of the
things that we talked about, how do we get around the barriers that prevent us
from taking a very, very rich data set and using it for purposes that are the
common good, to borrow from Sharona.
MS. MILAM: Let me jump in, is there anyone on the phone who would like to
add to the discussion?
DR. MAYS: I just want to point out that in the report that we did on
eliminating disparities in data collection on race, ethnicity and primary care,
we actually have a section on some of the difficulties in privacy issues,
relative to the collection of that data, that would be great if that could get
picked up.
I think the idea is great. I think you have some new friends that you didn’t
have before, so I think this is actually a wonderful idea, if you could even
have another meeting with your new friends.
DR. COHEN: The new friends comment really resonated. I think one of the
unforeseen fantastic benefits of these last two and a half days is that there
are lots of fellow travelers that we can incorporate into what we are trying to
do. That is one of the key outcomes for me, of these last two and a half days.
We have identified colleagues that will continue these discussions, so thank
you for reminding me.
The other piece that actually Denise Love raised is viewing the impediments
and overcoming the impediments around data sharing. That is a huge issue that I
think I would like to see the stewardship and privacy folks get involved with a
little more, whether it is sharing of federal data or federal-state data, or
how to provide data to communities.
MS. GREENBERG: A lot of things in this report, I am just looking through it,
are still relevant.
MS. BERNSTEIN: Bruce just touched a nerve, which I am not sure I expressed
previously to this group, which is during the week, we heard not so much, but
often, when I go to meetings, I hear privacy and confidentiality talked about
as a barrier, an impediment, a roadblock, what other kind of negative metaphor
that we have, rather than a way of building trust, ensuring participation,
things that are on the more positive side.
I just want to make a marker to keep that in mind, that there is a reason
that we have those things, that without those things, we can’t get the data in
the first place, so to try to think about it in a more positive turn. Yes, we
have to figure out how to make things shared in an appropriate way. It just
sticks with me.
DR. FULCHER: It just comes back to that front end part around how these data
systems are built, how they are framed, and also, at the front end in terms of
negotiating contracts, whether with external vendors is the speedy access and
the ability to share that data. That is really important, I don’t want to go
into depth on that. It comes down to, again, at the front end, in terms of
allocating funding for building systems and the purposes is just making sure
there are provisions on the front end for how that data should be shared. Of
course, this all depends on the type of data we are dealing with, but really
thinking through about the sharing of that, that is actually written into the
language of the contracts, et cetera.
MS. MILAM: One last comment, we have got about 15 minutes, 20 minutes left.
MS. KLOSS: I was actually going to try to move us to the third area and just
throw out a starting place for discussion about how we eat the health
statistics modernization act recommendation elephant. We have got populations
taking one of these initiatives, privacy taking a second.
I wonder if the chair might want to consider discussion session at the June
meeting, and engage the whole committee, based on the summary and what that
would mean. Again, taking Paul’s view that we need to think about this from the
10 to 20 year transformative marker. Really, tee up a rich discussion by the
whole committee, and then, decide how to break it up and advance it. I think if
we put it now into a workgroup, it will narrow. I think we need some expansive
thought on this, some far-reaching though, before we break it down.
MS. JACKSON: Along that line, because I was thinking the same thing, at the
last meeting, you had time on the plenary in preparation describing to the full
committee what was going to go on here. What you want to do for this next
meeting? That is just in a month or about six weeks, is to have some background
document materials so everyone can be on the same page.
That was what you were planning to do originally, to get everyone involved,
so everyone will know what was there, have things on SharePoint, have things
listed on the agenda. Just as long as we can accommodate that, so that everyone
will be ready to joint his journey with you, instead of having to drive them
along.
DR. MAYS: Can I just ask, what about something for Justine’s group? I think
that the notion, it is almost like some of the things that Ed talked about, the
notion of really getting it out has a lot to do with Justine’s group. Is there
a piece for them?
DR. CARR: I am here, taking notes for the workgroup, because I think this is
important in shaping our thinking, in particular, the resources already
available and making that. We have been focusing on what is on healthdata.gov,
and why isn’t it used more often? I think key learning from here is there are
compilations, like community comments, the county indicators, et cetera, where
that data is already being used.
I have asked Lily to do a gap analysis to see, just in those two areas, are
there data still that we have on healthdata.gov that are not incorporated in
that. Then, I think we have been focusing a lot in the workgroup on usability.
Bill Davenhall had begun to put together an inventory of what is in each data
set, and strengths and limitations.
I think we need to harmonize that with what the resources that we have
already learned about today or this week. That is one key thing, if the work is
already being done, then point people to that. Help them raise awareness, so
that people know where to go for that.
Then, the other issue is tools for using the data. I think that is the
price, and now I am going to think about demand side. Again, we have learned a
lot about what communities are looking for, and we will take that back to think
about how do we get what we have in a format that can be used by communities.
Did you have other ideas?
DR. MAYS: I did. What I was actually thinking about is that we have a little
graphic. I was just thinking about if, to some extent, well, once you see it,
see if your group can also come up with some suggestions about how it is that
we could make this happen, to get this data out quicker. It is something that
Len put together, and it is something that we are going to have a small group
on. I think your group, also looking at it, would be great.
MS. MILAM: Larry, do you want to react to Linda’s suggestion?
DR. GREEN: I think it is a good idea. We have to do the standards attachment
letter. That will be our top priority. From what I know now, this will fit, and
it would be timely and appropriate. I like the way Linda framed it entirely.
Again, this is a hard group to shepherd. Remember, our target here is the
community is a learning health system. Our most recent work is rich. It
happened at 3300 something Toledo Road at the end of April and early May of
2013. It is the next event, next stop on a long journey. This journey is going
to go for a long time from here.
I just urge these groups that are setting up nicely to do things. One is
think about spotting gaps, based on what we have learned and what it would take
to fill them. Spot gaps and fill them, as it relates to communities being able
to be learning health systems, particularly when they relate to health
statistics, privacy and security and confidentiality, new uses of data, new
sources of data. This is not a generic proposition.
Please focus on communities as learning health systems and the way health
statistics can enable them to do that, to actually improve their health.
Remember, our overarching goal is we are looking for better ways to improve
population heath. We are the data folks. To come close to quoting one of our
former chairs, NCVHS is at its best when it envisions what is possible and
needs to happen, and stays in its lane. That aligns with what Ed was saying a
while ago.
I am going to take it that these decisions are made. We are going to have
not fewer than two products that grow out of our work the last two days. We
will get to a letter to the Secretary, and one of our constraints is we do not
intent for this to be a long letter, and we do not intend for this to be a
litany of possible recommendations. We aim to hone in on a small number of
actionable things that the secretary and the department can do, based on what
we have learned, contextualized the recent authority reports, et cetera.
The other one, there will be a summary of this workshop. We haven’t gone
beyond that, where I feel like we have got consensus. I anticipate that we will
also build consensus around there being another type of report for a broader
audience that goes beyond department, because this is about community.
I think that is where we are, I think it is a good plan. The other thing I
wanted to call out is I would like for us to not leave the room without knowing
how these subgroups are going to be staffed.
DR. COHEN: I hope that the combination of Susan Queen and Kassi Webster
would staff. I need to talk to Debbie about other potential resources, I think.
I think we will try to set up a conference call very soon to get us moving, so
that is the immediate plan.
DR. NICHOLS: Maybe that goes without saying, but I would certainly get
Scanlon involved. I would reach to the people you know in HRSA. Let’s just
start with Jim.
MS. GREENBERG: I don’t think we have anyone on the phone right now from CDC,
but at least we did the first day, the person who is working in the whole field
area of community needs assessment. Bruce and Sallie and I are having a call
with her.
DR. COHEN: With Vickie Booth, I do believe, and her colleagues.
DR. GREEN: I want to interrupt. Let’s distinguish that we are talking about
two things at once. Who are the critical liaisons and who is going to staff it.
DR. FRANCIS: From the privacy, confidentiality and security, oh, sorry, I
had a couple of questions, but I will wait.
MS. MILAM: Paul, is your comment with regard to this work or the
stewardship?
DR. TANG: It is on the modernization. I guess I am a little nervous about
what we have done in the past two and a half days. I think we had an incredibly
rich two days. I am nervous that we are wrapping an old elephant in new
clothes, by coming out the same way. I am very inspired with what Ed just said.
He is still a representative of the department today.
I think we can go for the health statistics modernization initiative, to
take it away from an act of Congress because of what Ed just said. We can do an
incredible amount of introspection and change what we do to align it with the
new world and address communities. One of the new alignments is to address
communities however they form. They are the unit of action.
The second half of what I was trying to say earlier is we have the new data
sources. Probably the thing that most impacted my thinking was, I think
yesterday, when I, for the first time, heard the definition of smoking from a
public health point of view, which is 100 cigarettes in a lifetime. No
clinician, and Justine, would blink an eye, and Justine smoked 100 cigarettes
and she is not a smoker.
I would say none of us clinicians would ever consider 100 lifetime
cigarettes to be a smoker. Why, because the threshold is, does this amount of
smoking change this person’s predicted health outcome or not. Bruce asked me
what I would say, and with two seconds of thought, I said, maybe ten packs a
year. That is three orders of magnitude from the definition that I had no clue
was being used for a smoker.
I would have to recalculate. That is what we were talking about, this might
surprise. I would have to recalculate all of the health statistics I have ever
read, including in my own county, which is what I looked up after I heard this
definition, and say, what does this mean to me now? As a policymaker, I would
say, what does this mean to me now?
In my county, it says 10 percent smoking. In one hand, I can count the
number of people I have seen in the past decade who smoke. I could never
understand that and now I do. I can’t imagine what the difference in resource
allocation, in the interventions, or the lack of interventions, that would
mean. All of a sudden, what we talked about is drawing information out of the
EHR, so we don’t have to reask things. It has no meeting. There is not one EHR
on this planet that captures that detail in that way.
Either we join the new world and try to think of data, I mean, this is not a
criticism of the past. It is to say, look, we had to go out in these very
well-constructed, but time-consuming and expensive surveys. Can we use new data
that is available, can we use new connectivity, but we would have to share the
same definitions, if we are going to do that. Maybe we should, because maybe
there is a new public health definition of smoker, as a really good example. We
have a million hearts campaign, and yet, I have no idea now what percent of
this country smokes, in the clinical sense.
What I hear is, we could reformulate some of our thoughts, without another
law, and take advantage and actually think public health in a very, very new
way. One, not at the population, even the county, which is the other insight
from these past two days, but at the community. What is a community? A
community is what they self-define, because they are the ones that are going to
take the action. That is why we focus on them. We have to figure out what it is
the problem to solve at their level. It is not a ZIP Code, it is not a county,
it is certainly not a population for the country.
What incredible, and all of a sudden, the people who are going to act are
right there. They have always been right there. The only thing they haven’t had
is data that pertains to them, their problem they want to solve. I have been
really enriched by the conversation we had, the presentation we had in the past
couple of days. I think we need to act very differently, and think about the
problem very differently. It is probably within our wherewithal, in terms of
this modernization initiative, rather than an act.
I just think we are in the forefront of a huge opportunity, but we would
have to recognize it as what it is, not with our old, not package up this new
health in old clothes.
MS. MILAM: We have a few requests for comments, and we are almost to quarter
till, so we need to wrap it up and have a few final discussion points around
that summary. I will take 30 second thoughts from the folks with tent cards.
MS. GREENBERG: I wanted to comment on the agenda, because it is still in
process. I think we had set aside a kind of a chunk of time to talk about
convergence. I am wondering if we shouldn’t sort of redirect that, because it
has to do with convergence actually. If there is agreement on that, we will go
back and look at the agenda. I think we can do that.
Since this is on the internet and everything else, I wouldn’t want to leave
this group, and anybody who reads the transcript or anything else, to think
that the federal government is defining smokers, beginning and end, as people
who have smoked 100 cigarettes in their life. I would have to get more detail,
but I know there is a set of questions that have been recommended for
meaningful use. They have been taken from the health interview survey, they
have been tweaked from that. The age groups might not quite be the same, but I
think it is a starting point. If you have never smoked at all, why ask? It is
like a screener or a starting point.
I am just afraid that you all are going to think now all the data you see
about smoking is just defining people as they have smoked 100 cigarettes in
their life. That is not true. Valid point still, but it is not the case. Those
were just the two things I wanted to say.
MS. BERNSTEIN: I just want to quickly make a note about staffing. Of course,
Kassi and I were assigned to be the lead staff to these two subcommittees and
we are going to be working on this. I think this is the most complex meeting we
have ever put together and run.
I think we are going to need to draw on many other resources, throughout the
department. Even though there are certain particular personalities that you
know and like, and are comfortable working with, I hope that the committee
would leave to Jim and Marjorie, and maybe myself and Kassi, to recruit other
people from around the department that are experts that can help you.
DR. FRANCIS: I actually, as co-chair of one of the two sub-committees,
wanted to do two things that populations had a little moment to do. First of
all, I hope some of our new friends here will continue to participate with us.
I won’t call anybody out to volunteer right this minute, but I might email
people or ask. Actually, what I will do is ask anybody to email me or Linda if
you have a particular interest, if that is okay.
Secondly, the staffing point, this is by way of thank you. The staff, what
you guys did in pulling this together, and I am looking at Kassi and also Maya,
but there are others, too, the whole team. It was just unbelievably amazing.
These guys were exhausted and I want to make sure they have help, please. Our
subcommittee has really never had a lot of help beyond lead staff.
MS. GREENBERG: I do want to recognize Linda, because Linda really had the
experience and the knowledge of how to run and organize a meeting like this,
which we hadn’t done before. It wasn’t sort of theoretical, I think, it was
from on the ground experience. Because she laid it out so clearly, and the
different roles, and we might have thought there were too many roles. We all
agree now, there weren’t too many roles, we needed every one of those roles and
every one of those people.
I think you really brought something to us that we couldn’t have done it
without that experience and guidance, and it worked, so thank you to Linda.
DR. FULCHER: First, thank you much for inviting me to this meeting. It has
been a fantastic experience. It is just a stranger in a strange land of trying
to figure out what we are talking about of data.
I think one thing, just be aware, the comments that I provided are really
from the context of community-driven data. There is a whole lot, so there are
two worlds we are looking at. There is all the great work that we are doing
with all the national data that is being disseminated out across the country. I
am talking about the data that the communities are collecting.
I mentioned yesterday that the president of the United Way said, that is a
wonderful thing. You have got all this national data, but it is not good
enough. My comments, and building on Larry’s and Paul’s comments, is about it’s
community and change in the way we think about it.
How do we bring these two worlds together? That is the key thing. When I
talked about funders and protocols, and making agreements in place, that is all
driven a lot by major foundations and NGOs that are steeped in communities that
are collecting community data. That needs to be aligned in a way that we can
meet with the data that we are collecting through HHS, et cetera. I just really
want to thank you for this wonderful opportunity and look forward to being
engaged, however you want me to be.
MS. KLOSS: Just a quick comment, I think you have just given us a way to tee
up the discussion at the committee meeting, of bringing not just two worlds. I
mean, there is the clinical, the statistical and the community world. What we
are trying to do is bring all of those together, and that may be a good way for
us to frame the discussion. Thank you.
MS. MILAM: The last item is the summary for the June meeting. We have talked
about Susan Kanaan drafting it, circulating a draft for input ahead of time,
including the community participants. Is there any other planning we need to do
relative to that summary for the June meeting?
MS. KANAAN: I would just ask that we get a fast turnaround on the
transcript. I will work from my notes, but I would like to be able to also go
back to the transcript. We will go for five days.
MS. GREENBERG: Do you think it is realistic, I don’t want to put you on the
spot, but just to throw it out here, to get a draft that can also be seen by
the other participants before the meeting? Do the members or the co-chairs, at
least, want to review the draft before it is sent to all the participants?
DR. COHEN: No, simultaneous.
MS. GREENBERG: We always look at it first.
DR. COHEN: One final point, this was a totally new experience for a lot of
us, in the context of this committee. We do want to evaluate it. We are going
to be developing an evaluation, probably an online evaluation. Please, fill it
out and give us any suggestions about the process and the structure. One
important thing that Susan mentioned, who else should be at the table, is going
to be one of the items that would really help us move forward. Thank you.
MS. MILAM: The last item on the agenda is the opportunity for public
comment. Is there anyone who would like to be recognized? Any other issues for
us to take up?
DR. EDWARDS: Like Chris, I wanted to say thank you for inviting zero divide
here. I am honored that I had the opportunity to represent Tessie Guillermo,
who wasn’t able to attend. I can speak on behalf of the organization. We really
do look forward to an opportunity to try and collaborate and facilitate the
work that you all discussed. Thank you for having us.
DR. CARR: This is Justine. May I make just a point of clarification? A
couple of times, I have tried to get it in. When we talked about the community
needs assessment, there were repeated assumptions that for profit hospitals do
not do that. I can tell you that I represent 11 hospitals that are for profit
and they all do that, and actually, exceed the expectations. I would just
request that the transcript be modified to demonstrate that we ask that all
hospitals do it, regardless of their status.
DR. TANG: Are you required to, though?
DR. CARR: The way it was framed, as I am reading through the notes, just
acknowledge that while some may be doing it, we may want to require more.
DR. COHEN: The IRS requirement only refers to nonprofits. I think that was
the only thing we were saying. We did mention that there are lots of hospitals
and states ask hospitals to do these things. Thank you for the clarification.
We will make sure.
DR. GREEN: I want to use that last exchange to suggest that you reconsider
not wanting to see the summary before it is distributed widely. If none of you
want to do it, I want to see it before it is distributed widely.
I would urge the four of you that have led this, just to decide that we can
do it on a 24-hour turnaround. She sends it to us, we sit down and we read it.
We look for something flagrant or something that we are pretty sure is
misrepresented. I think the odds of this are small. We are talking about Susan
here. I think we ought to look at it.
DR. SONDIK: I just want to thank the committee for looking into the future.
Maybe the name of the committee should be changed, strikes me, I am serious.
That would mean years before there would be any sort of decision. The National
Committee on Vital Statistics and Health Information maybe, because I mean,
vital statistics are what they are.
I think in the foundation, but they are foundation for health information.
It is not just a foundation for health statistics, if you will. I think that
would tend to emphasize the use of the data. It really was terrific.
Marjorie, thank you for showing this again, because there really is a lot of
good stuff in this. It is terrified to hear the committee, so many focused on
this notion of the use, and how integral that is with the community. I didn’t
say it very well before, but you know, for some things, issues, the community
is very small. It is a block. For some things, it is much, much larger than
that. It is sort of a complex thing. I thank you all for what you are
continuing to do.
MS. MILAM: Any final comments? We are adjourned. Thank you all for coming.
(Whereas, at 12:00 p.m., the meeting was adjourned.)