Transcript of the November 14, 2013 NCVHS Full Committee Meeting
[This Transcript is Unedited]
Department of Health and Human Services
National Committee on Vital and Health Statistics
November 14, 2013
National Center for Health Statistics
3311 Toledo Road
Hyattsville, MD 20782
Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030
caset@caset.net
TABLE OF CONTENTS
P R O C E E D I N G S (9:40 a.m.)
Agenda Item: Call to Order, Re-Cap from Previous Day
DR. GREEN: Welcome back. Debbie Jackson, let’s start from your end of the
table and we will come around this way.
MS. JACKSON: Debbie Jackson, National Center for Health Statistics, NCVHS,
committee staff.
DR. GREEN: Probably the last time she can just say that.
DR. SCANLON, W.: Bill Scanlon, National Policy Forum, member of the
Committee, no conflicts.
DR. MAYS: Vickie Mays, University of California Los Angeles, member of the
Committee, member of Populations and Privacy. I have no conflicts.
DR. CARR: Justine Carr, Steward Healthcare System, Boston. Chair on Working
Group on HHS Data Access and Use.
DR. FRANCIS: Leslie Francis, University of Utah, co-chair of Privacy,
Confidentiality and Security, member of Populations and member of the Full
Committee, and no conflicts.
MS. GREENBERG: Good morning. Marjorie Greenberg, National Center for Health
Statistics, CDC, and executive secretary to the Committee.
DR. GREEN: Larry Green, University of Denver Colorado, chair of the
Committee, no conflicts.
MR. SCANLON, J: Good morning. Jim Scanlon, HHS Office of Planning Evaluation
and executive director of the Full Committee.
MR. SOONTHORNSIMA: Ob Soonthornsima, Blue Cross and Blue Shield of
Louisiana. Member of the Full Committee, co-chair of the Subcommittee on
Standards. No conflicts.
DR. COHEN: Bruce Cohen, Massachusetts Department of Public Health. Member of
the Full Committee, co-chair of Populations Health Subcommittee. No conflicts.
MS. KLOSS: Linda Kloss, health information management consultant. Member of
the Full Committee, co-chair of Privacy, Confidentiality and Security
Subcommittee, member of Standards Subcommittee, no conflict.
MS. GOSS: Alix Goss, Pennsylvania Health Information Technology Coordinator,
program director for the Pennsylvania eHealth Partnership Authority. I am a
member of the Full Committee, member of the Standards Subcommittee, and I have
no conflicts.
MS. MILAM: Sallie Milam, West Virginia Health Authority. Member of the Full
Committee, Privacy and Populations. No conflicts.
DR. CHANDERRAJ: Raj Chanderraj, practicing physician, Las Vegas, Nevada.
Member of the Committee and member of the Subcommittee on Standards.
DR. CORNELIUS: Llewellyn Cornelius, University of Maryland. Member of the
Full Committee and the Populations Health Subcommittee. No conflicts.
(Introductions around the room.)
DR. GREEN: We have a quorum; that is a good thing. We have lost a couple of
folks that had to be elsewhere on the second day of our meeting. I thought
yesterday was a good day, and I thought last night was really terrific. I want
to thank Debbie and all the other staff that organized our dinner together last
night. It was a memorable event.
I am grateful that I got to attend, and I really enjoyed all of you, plus a
lot of folks I hadn’t seen in a long time. The affection in the room for
Marjorie Greenberg was simply palpable. You could close your eyes and feel it.
It was lovely, and I thank everyone for participating very much.
We probably have variable opinions about how far we’ve gotten yesterday and
early this morning on the standards committee. I do think we have agreement
that we got goal one done, and that we are here this morning to work on goal
two, and that we have done a lot, if not most, of the preparatory work for that
in three buckets. What we really need to do now is harmonize those three
buckets, put them together in a way that makes sense.
We are in the fortunate position where we don’t have a deliverable that we
have to negotiate today other than our own agenda for ourselves for 2014. This
does not have to take all morning. We want to be careful here because we want
to make some promises to ourselves about what we are going to get done.
The way I am approaching it, you are giving me the work assignment of doing
everything I can to see that that gets done. We will be doing this next section
of work in an interesting environment with a lot of transitions going on with
Debbie as our interim executive secretary with a new director of NCHS with all
sorts of interesting health care reform politics playing out.
I am impressed that each of you as individuals, the better I get to know
you, the more I realize each of you has a reach and scope, depth and breadth of
understanding of this, that we are fortunate to have.
What we want to do is bring all that to the table today. Everything you
know, who you are, what you have done, how you understand this, step out of
your roles as seeing yourselves as a member of the particular subcommittee, and
see yourself as a member of the committee of the whole. We will all work
together to create coherence in our work going forward. I am going to lean a
lot on Marjorie and Debbie to get this done.
Any further comments from anyone? Any statements of alternative definitions,
particular requests, suggestions about how to proceed? Everyone is looking back
at me, and no tents are up. None of you have that look that I now recognize on
your face when your brain is really at work, and you’re about to say something.
If it is okay, why don’t we just take volunteers from one of the
subcommittee groups to come back now and say, okay, here is what we think we
want to do and discuss it to everyone’s satisfaction. Then, we will go to the
next one, and then we will go to the next one, and then we will go to the next
one. Then, we will see if, at that point, we can have something we can look at,
maybe on the screen in some way or another. Perhaps Dr. Carver(?) had made a
chart at that point in time or something, who knows. Then we will tell you that
is it, and then I think we will be close to adjourn.
The famous Dr. Paul Tang has arrived. Can you announce yourself and whether
or not you have acquired any conflicts overnight?
DR. TANG: Paul Tang, Palo Alto Medical Foundation, no conflicts.
MS. GREENBERG: Speaking of conflicts, well, you can imagine I have a lot,
but I don’t have to announce them. Marietta, is there anything that needs to be
said about the update on their 450 document?
MS. SQUIRES: (Off mic).
MS. GREENBERG: If you have any questions about what to do with it, just
check with Marietta. We need to submit those to CDC within seven days after the
meeting. Thank you for your cooperation.
Agenda Item: NCVHS Action Plan for 2014
MS. KLOSS: We have a revised 2014 work plan which the subcommittee talked
through and reflects, I think, the consensus that we had at the meeting
yesterday and your input. Essentially, we have three major areas, our
contribution to the privacy and security section on the HIPAA report to
Congress, line one.
We added kind of a target there that the draft of our section would be ready
by the end of 2013, and that we would have a subcommittee call at the end of
December or early January to review our draft, to turn that in and then have a
process, I am sure, where the subcommittee can look at how it fits into the
full report, and that second work, if you see the milestone’s second bullet,
would be late January.
We are asking Myra to take the lead on writing our section. I think that
because of the timeline, we are kind of ready to plow through it. We have had
good discussion about content, but we do know that the kind of overarching
recommendations, vision for going forward, would need to be better shaped once
the report is kind of together.
DR. FRANCIS: Part of the way everybody has been thinking about that actually
goes back to something Paul said yesterday. This whole report should be taking
into account the way the landscape has changed radically in the last two years.
MS. GREENBERG: That was something I was thinking about that, I know when the
standards subcommittee talked about that it was time to do another HIPAA
report, and there was so much on their plate and the committee’s plate, we were
talking about it being pretty much just, well, these are the facts. I think we
have gone beyond that, as we often do because there was a general feeling in
that discussion yesterday that this is a crossroads in many ways. Even though
it is true, the committee has other opportunities to communicate certainly with
the department, and could send other things to Congress, this is the one
report.
One thing I do want you to think about, well, I will mention that later. I
think it has been notched up in the importance of, not that it is going to be
longer than was planned, but the themes or the messages. I mean, that is what I
heard.
DR. GREEN: Let me ask about Maya and Carrie. How are these parts going to
come together?
DR. FRANCIS: Terry, I think, was going to send us a copy of the draft where
she is. Then, when we get our section done, it will get dropped in. Then, my
understanding was that that is the point in which the conclusion about future
directions will be written.
MS. DEUTSCH: I have had conversations with Maya. The way we are going to be
doing is we are going to communicate back and forth. I am going to send her a
section that I have almost completed on the enforcement that we have for the
claims, so that the two can, wherever they can be the same formatting, it will
look like it is one author. One thing I want to make sure is that it doesn’t
look like different segments were written by different people. She was amenable
to that.
I think you are correct in the fact that once the entire report, at least
the first part that addresses the accomplishments and the progression is done,
I am going to do a draft of the future, that is when I think you will have the
opportunity to look at future section and determine how you want to address
that and what direction you want to go to.
I have talked to Maya that, if she can get it done to me early, as early as
you can get to me, the more I can put it together and try to get the
information out for your review earlier so that there could be time for
revisions and discussions needed.
DR. FRANCIS: Would you like a timeline that is a little earlier than we have
up there?
MS. DEUTSCH: It would be preferable because we are dealing with the holiday
season coming up. I want to make sure that you all have the opportunity to look
at it. The report is a little bit different than how it has been done because I
am trying to cite and do annotation and attribution where appropriate, so it
shows that things have been accomplished and have been vetted, so that nothing
in the document or in the report would be something that the secretary was not
aware of.
The future is different, so that has a different way of approaching because
as you mentioned, the landscape has changed. Electronics and transmission and
technology has all changed much more than I think was envisioned in 1996. How
do you go from the HIPAA requirements, which is what this report is about, and
how do you take that and bridge it to the future? That will take some work so
that Congress will get a report that will give them a clear picture of what has
happened and the direction it is going, so they can think about what role they
have to play and for the future.
MS. KLOSS: I change the target on the slide I am working from here to
mid-December for the draft of section.
MS. GREENBERG: I just want to say how fortunate we are that CMS has asked
and assigned Terry to write this report with us. I learned that she has written
something like 21 regulations. I mean, she is a pro. I really appreciate it,
thank you.
MR. SOONTHORNSIMA: Larry, would you mind? Maybe Terry can tell us a little
bit about her background because it is very impressive.
MS. DEUTSCH: I have been in health care for 45 years. I was speaking earlier
about the fact how I have seen how health care has changed so much from when I
first was a nurse. I graduated in 1968. Health care has changed in so many
ways, and in some ways, it hasn’t changed at all. We didn’t have all the gifts
that we have now with technology and everything available. A lot was left to
senses and using your senses, and just looking at the patient.
I have progressed and, from a clinical point of view, I was emergency
trauma. I worked in level one trauma centers and L.A. County USC and all of
those places. Then, I did planning of medical centers around the country. That
taught me a great deal more about the integration in all levels, in primary,
secondary and tertiary levels, outpatient, inpatient, et cetera. I have done
case management, so I learned about the transitions of care. I have a
background in health care that is really quite strong.
I have been in CMS for 13 years. I did spend most of the time in payment
policy working on regulations in policy for payment. I know George, and I had
to present to George when he would do the review of my rules, and we did okay.
I am now on a detail to OESS, and I have been asked to do this report. I
consider it an honor, and I am very grateful to be here. I think you all are so
bright and have such a great vision. You have a drive that is just so wonderful
to look at and to see. I am really honored to be part of this, so thank you.
DR. GREEN: When is the report due? What is the production deadline?
MR. SOONTHORNSIMA: We pushed it out to February. February is when the final,
and we will have a meeting.
DR. GREEN: This will be a key decision/action item for us at the February
meeting. We expect to be done with it.
MS. KLOSS: Our section is geared toward really having the complete report
ready in pretty early January because it is going to have to go through
executive subcommittee review. It is going to take a couple of iterations.
MS. DEUTSCH: Even earlier than that. I mean, I really have a goal for the
rest and whatever can be done to have it earlier, so there’s time to be able to
look at and massage it, and make it, so it answers and addresses the way you
want to address it for Congress.
DR. GREEN: I yield to your preference about how you want to manage this. It
would suit me if we just went ahead now and scheduled an executive subcommittee
meeting to be time to have that review prior to the February meeting. Then, I
would want to invite all committee members to join that executive committee
call, should they be able to and if they wanted to. Also you, Justine, I would
be really delighted if you wanted to join.
MS. GREENBERG: She is a liaison to the executive subcommittee.
DR. GREEN: I can’t keep straight when you are supposed to declare conflicts
of interest. Just keep me in line here. All right. I think we have got that
consolidated, right? Everybody is good.
DR. CHANDERRAJ: Just a comment, I don’t know if this is a proper forum.
Since we are at a crossroads, the change is happening so rapidly. The
regulations are putting a strain on the physician of community providers. Maybe
the regulations can be modified so that there is some part of education and
correction of deficiencies rather than penalties being imposed at this juncture
where there is a lot of changes going on, and enabling them to correct the
deficiencies, providing them tools would be part of the regulations, rather
than penalties.
MS. DEUTSCH: If you are looking for the report to Congress to do that, that
isn’t the vehicle that would address that. Regulations are governed by many
things, and often it is the statute. I have not ever seen a report to Congress
that questions the process in a regulation. I don’t know if there is other ways
that you handle here in this committee, but it wouldn’t be the report to
Congress.
MR. SCANLON, J: We don’t usually make legislative proposals or regulatory
changes in reports to the Congress. It is really meant to they tell us what
they want. We are reporting here on progress and what the future looks like, so
I think we had better stick to what we already agreed to. There are other
vehicles to discuss that.
DR. GREEN: I think I hear both messages, and they don’t seem conflicted to
me. As I understand it, the way this report will be set up is it will be
referenced back to prior work. It will stay on task; it will stay on track.
There will be this description of the situation at the time that the report is
being made.
One of the characteristics of that situation is there is a lot of provider
strain. It may not be because of HIPAA, but it is for all sorts of reasons.
That is the environment.
MS. DEUTSCH: That has been documented in your letters to the secretary and
at hearing testimony. It has been documented, and where it is relevant in the
report, those testimonies and letters would be referenced. There is a way of
describing the situation that is going on as opposed to saying that there
should be a change in regulation. The report would describe what the industry
is indicating, and then Congress can make their assumptions from there.
DR. GREEN: To keep this on its timeline, I have another question. We are not
going to have any new committee members between now and then is my belief. We
still will have Paul and Bill at this point in time.
DR. SCANLON, W: Unfortunately, due to the furlough, I am going to have to
not be at the last meeting because something I was going to do in October is
now scheduled for those days.
DR. GREEN: Okay, so you have to work double time for the calls leading up to
it.
MS. KLOSS: Item 2A is the work that we described yesterday on a report on
stewardship best practices for community use of health data. This is comprised
of research adhering to reflect really our conclusions, and what we have
learned from research and the environmental scan work, and then report
preparation. We didn’t change the timeline here, so we would expect to have a
report for committee review in September 2014, assuming that we get contractor
help now really, as soon as possible, and do that research in quarter one. We
hold a hearing in quarter two, and then have the quarter two/quarter three to
develop and draft that report.
I think as we wrote this out a little more specifically with target and
milestones, it occurred to us that we not only need help and resources to do
the research, but we need the reporting writing resources, too, because it
won’t do to just get us up to the hearing and have all this background stuff,
and then have to rely on the volunteers to do the report. I modified that
contract column to reflect contractor for research and report writing, and of
course, the staff for all of the hearing administrative tasks.
DR. FRANCIS: I think we put that into the request to Marjorie already, the
writing and coming to the meeting and so on.
MR. SCANLON, J: The work would include the pulling together what we have got
together, but also to summarize and analyze what we hear.
DR. FRANCIS: Actually, the person that I know is a JD who has considerable
experience in health policy. She has been an aging fellow in Congress this past
year on health policy issues. She is a former head of the Utah Commission on
Aging. She has done a lot on regulation, legislation, and privacy.
She is finishing a PhD in nursing and has some time. Basically, she is doing
stat for a PhD. She is back and forth between Washington, D.C. and Utah, so she
is somebody we would be able to work with very closely. Actually, I think Maya
is having lunch with her on Friday.
(Laughter)
DR. CARR: A clarifying question, the proposed hearing, how does it compare
and contrast to the previous? I know we heard some best practices at our
roundtable and at the previous hearing on communities. I guess are we looking
for something different, and what is the evidence that there is something
different out there. When we get that, the work product, will it be a narrative
of here is good things, or will it be a toolkit of here is how you can approach
these issues?
DR. FRANCIS: A couple of things on that, and I am going to say note to some
extent the parallel between 2A and 2B. We have heard over and over and over
again that it is critical to build privacy and security into the ways in which,
at the community level all the way up to the public health department level,
data get used. We heard that on Tuesday probably every single panel emphasized
the importance of having good practices and looking to this committee for
suggestions. The honest answer is we don’t know what is really out there. I
mean, we have heard how communities use data, and we have heard communities
tell us that they need help in figuring out how to do what they should do so
that trust is ensured.
That is actually the reason for the environmental scan. We want to find out
what some of the models are out there that we might not know about. We haven’t
really heard a developed, what are communities doing about data security. What
are communities doing about transparency, about data repurposing? How are
people figuring out the problems when data sets get merged? All those, so that
is why we want the environmental scan.
Then, depending on what we find in that, we would structure a hearing. What
we are now seeing is that probably what we would want to produce would be some
descriptive information about how are some good ways you could do this. That is
the goal. It probably would be in the form of a report. I am not sure it would
even be as mature as a toolkit because that might be even too prescriptive, but
it might be a toolkit if we learn some things like that.
Primarily, it is going to be, look, here are some communities. If you were
looking for help, here are some methods you can use. Public health departments,
if you are looking for help, here are some methods you can use.
MS. KLOSS: I would add two things to that. First, it would be our intent to
include in the environmental scan all of the previous testimony we heard. We
are going to go back over those transcripts and pull out those pearls, and make
sure we are using all of that input.
What we heard at the roundtable was that, and I think I reported on this
yesterday, the most useful vehicle for sharing what they would most like to
have would be case studies. I think we are thinking of this as community acts
with these characteristics is approached this way. I think we are thinking of a
case study approach.
What we thought the hearing would do is react to those drafts. I am kind of
thinking, and this may change as Leslie said because we may have new insights,
but we may invite some of the people who have participated in the past to come
back and react to what we are learning so that we kind of close the loop. They
said case studies were useful; here are some draft case studies. How are they
being improved upon? Our goal isn’t to go out and find new communities, and
start afresh.
DR. CARR: I am trying to do the intersection between this work plan and the
overarching one that we heard from Bill, which is a lot about methods,
framework, taxonomy. There was a lot about tool kits, develop a tool kit to
help communities use data, and guide decision track and trend. I just think
that we should make sure that the work product that we talked about when bill
was speaking aligns with the work product that we are thinking of for this
initiative. Tool kit could be case studies or whatever. It just seems like we
had a nice plan yesterday, and today’s work is to take that plan and fit in
what we are planning to do with that.
MS. KLOSS: I think there was a methods layer in the framework plan. This is
the teasing out of existing methods. I think we are going to have that same
discussion when we get to standards because that emerged as a how do we keep
the work going, but be thinking of that framework so that the work products
drop in? I see this as something that will identify contributions to that
methods layer.
DR. FRANCIS: Some of the methods might easily be standards methods.
Standards for security, for example. Some of the methods might not be. I mean,
they might be things like a data use agreement doesn’t have anything to do with
standards. It could be a method for protecting.
DR. TANG: Having some of the same thoughts that Justine is having, and I
don’t know that it is a hearing, asking new people new questions versus if you
want to do, take existing material and how do we format it into something that
is constructive and useful. Maybe that is a workshop. It is a working meeting
versus a hearing, let me hear and listen. That is point one.
The other thing which might be a hearing, meaning new information, is if you
think about the security assessment problem challenge or actually what we heard
from the communities, it is partly a last-mile problem. How do we get people
engaged? People understand you should use seatbelts, or people understand you
should use booster seats. It took PSAs to help the real people who have to
implement that to get on board.
Same thing with use of public health data. I think that is what “case
study” is code word for. Can you help me to sell this to everybody else
who has to actually participate? That is really a last-mile problem. That is a
different problem to solve. I am trying to figure out what is the problem to
solve and what can we contribute, and what are they asking for? It is almost
they are asking for the PSAs for the seatbelts.
DR. FRANCIS: I didn’t mean to interrupt you, but I think we heard on Tuesday
that it is actually not a last mile problem. That there are lots of barriers to
sharing data that have to do with concerns about privacy and security. That
there are a lot of places where people aren’t going the first mile because they
don’t feel that they have the insight about how to do it.
I don’t know, maybe it is semantics what is first mile, last mile, I am not
sure. I think it is a real early on problem for a lot of places.
DR. TANG: I guess the way the way I would respond to that is last-mile means
the end user, the people who are going to be the beneficiary. If you don’t have
them at the first stop, it is really hard. I think that would be the new thing
that people I think were asking for. There are two approaches.
One is let’s work on what we already have, which is a workshop kind of
thing, let’s work together. The other is are there new things that we need to
discover or create on behalf of people. PSA really gets created on behalf of
people who can’t afford doing a PSA. The government does that, the government
did the seatbelt, the government did the booster seats, the government did
smoking. That is what it takes to get to that last mile.
MS. KLOSS: I think we probably will know more when we have done the
environmental scan. It may be very productive for the committee to spend some
time looking at what we are learning from that, and allocate some time in
February and think through what it is suggesting is the right focus.
DR. MAYS: My comment is similar to what Paul is raising. It was kind of what
I was also struggling with yesterday, even when Bill was doing his
presentation. When you started the meeting, you talked about the number of
transitions and changes. Part of the change you are talking about is what is
happening in terms of the Affordable Care Act.
Part of our going back and looking at a lot of things in the past may not be
exactly where we want to go in terms of the future. Again this is truly my
bias, but I think that when we think about what Justine’s workgroup is going to
do, that is really getting us towards the direction that the public is going.
I think what we need to be thinking a little bit more about is exactly what
Paul is raising, which is we talk about a case study, but I don’t know that
going forth that the traditional case study may be the way to do it. Unless the
user that you are really trying to get at are users who are kind of like
Departments of Public Health or academia or something like that.
If what we are really talking about are the communities that I think what we
have to think about is how are we really going to go. I agree exactly with what
you said. How are we really going to take this to answer the problems they
raise? I don’t think it is going to be necessarily case studies. I think it is
going to be little YouTubes, I think it is going to be campaigns. I think it is
going to be right now, we argue that the federal government says it can’t print
anything out, so you have to go to the website. We have got to figure out how
to get it in their hands and in a format that is more typical of what they use.
I struggled yesterday, but I think we have to change the way ACA is. All the
looking back and all the scans, and doing the stuff, it makes a case for the
secretary, but it doesn’t make the case for the community in terms of what we
need to be thinking about. We have to think a little more futuristic.
DR. CARR: I guess over the last ten years of privacy conversations that I
have heard, I feel that we always have a yin and a yang. Here is what we would
like to do; here is what you can’t do. I think that what we have learned from
all these hearings is that there is a continuum that is driven by trust and
engagement.
When there is engagement around an important issue, one community talked
about rats in their community, they are all going to tell you if they have rats
in their community. If you walk into Beverly Hills’ highest-priced community,
they may not be interested in revealing that information. I guess as we think
about convergence, and we think about the potential of big data, the importance
of liberating data, that we develop an approach that recognizes that there is
no hard and fast set of rules that you absolutely must do.
There are some, but even yesterday, there are people that snoop in
electronic health records. Well, for years, people could walk into any unit in
any hospital, and pick up a record and see that. These are not new issues. I
don’t want us to get bogged down on what you can’t do.
I want to suggest that we develop a new kind of approach that says trust and
engagement are critical. That is where we need to be focusing. We will get
farther if we talk about trust and engagement than if we make a rule for every
possible thing that could go wrong. If we can converge towards those things and
put it out to the community, before you go doing anything, and this was very
much in the report, engage the communities and let them decide. I would just
think in this emerging landscape that we not try to retrofit all the old rules
onto the new data, the new environment and the new vision.
DR. FRANCIS: I really need to say that I actually think we agree on the
conclusion and we terribly misunderstand what each other is about. I have never
said rule; I have never said barrier. I have said facilitate and enable. My
view about appropriate privacy and security practices is that they are critical
to making it work because if you don’t have them, and not in terms of rules,
but people run scared. Data get locked up, and that is a very problematic
thing.
I want to be on the how do we try to figure it out future-looking in ways
that work. That is not about prescribing. It is not about writing rules. It is
about giving people some helpful models that they are clearly asking for and
think they don’t have. That came out really clearly on Tuesday.
DR. GREEN: What I would like to do is move us along here pretty soon. I
wanted everyone to keep your tents up. Everybody who has a tent up, I want to
hear from you. Let me offer a management comment here.
What I have heard in the last 20 minutes or so is extremely helpful, I
think. I would like to make an ask of Leslie and Linda here. The discussion is
saying we need to know the assumptions that we are making as we go into this
workshop. Several of you have spoken the assumptions that you are bringing to
this workshop, and why it matters and why it matters now. It would be really
nice to articulate those.
Another thing is all of you are actually somewhat indirectly proposing the
questions you will ask at the workshop, and that you want people to chew on and
you want to learn about. Another thing I want to offer a suggestion about is
let’s decide we are not going to use the word case study as a technical term.
What it means to so many of us that do case studies as a method, it really is
more of a pragmatic exploration of what is going on on the ground and what is
happening there. There is an innovation breakout someplace, and we want to
understand that. It is sort of like what the ONC has always called a use case
and that sort of stuff.
I will hush with this. We also have not reached an agreement about who our
audience is for this report. I am hearing that we have more than one audience
for this report. I think that we should make that explicit. If we know what our
questions are for the workshop, we know who we are going to invite to the
workshop, and we know how we are going to approach this, and we know who we are
going to be communicating with, I think this falls together very nicely.
MR. SCANLON, J: If we could be clear about what the objectives are, so that
why we are doing it could be stated globally, but at least it will help us
design it.
DR. COHEN: I think this discussion is not about the workshop or the hearing
for privacy and confidentiality. I think it is more about our struggle moving
forward, about whom we are trying to reach with what message. Essentially, as
the National Committee evolves, our target has been the secretary, but also our
target is the community, as well, to influence change.
When we are thinking about evolving our work, we need to think about
critically messaging and dissemination. What we are really discussing now is
how do we reach the communities we want and our different target audiences.
Traditionally, we have had a focus on letters and reports to the secretary to
influence federal policy. That has been our critical primary audience.
Now, we are evolving to try to reach a broader community. How do we
structure the messages and our work, and how do we disseminate information so
that we can reach this audience? It has to do with your work, with the
standards work, with the population health subcommittee work, with all of our
work because we are stepping back and trying to focus on a broader audience for
our efforts. I guess at some point, I would like us as a committee to discuss
our target audiences and the different dissemination strategies to reach these
audiences.
DR. TANG: Marjorie was talking about how much she loves the committee and
some of the reasons. Sort of the past two days have just been a reflection of
that. I learned so much. Hearing the different opinions, you often come away
with a changed opinion about something and that is really amazing.
I really like Vicki’s start about case studies is so retro in today’s world.
Ten years ago, you could still rely on case studies. Certainly 30 years ago,
you could. Today you can’t. What Justine and Bruce just said raises the
question of who is the audience. If you even look at the area of controversy
right now, it is about managing. It is almost not sort of advice to the
secretary; it is educating the public who now, more than ever before, is
engagable because of social media and because of the internet. That is very
interesting.
Even yesterday’s discussion about the framework, methods is another thing
that used to be very static. There is an RTC; there is this and that. It has
been serving us for 100 years. All of a sudden, it changes every day. That is,
what is a reliable data source?
I brought this question up yesterday when Justine was talking about social
media. Lo and behold, in today’s paper, is social media the right thing? Who is
participating, and do they get tired of it?
It turns out I guess Snapchat just turned down a $3 billion offer by
Facebook because the people who raise Facebook were teenagers. They are not
going as much to Facebook. The very data that you said, oh, let’s ride this
wave, just changed. The surf just changed; the tide just changed.
The data sources and the methods change every day. How do we decide what a
method is for our work anymore? I think we actually have to throw away. We
talked about public health and what you used to think of smokers. It is just
way not static. What is static?
There is something that doesn’t change as much because evolution works very
slowly. That is our sense of values and our motivation, which is why I am going
back to this here. It doesn’t help that much anymore to listen to the past.
Even what worked maybe in the past, because it won’t work today. What would be
helpful is to bring the right people to the table. Bring the right people to
the table.
How do we do that? Then when we are all on the same page from a motivation
point, then we humans will work together to formulate a solution. I almost
think we are using static methods, static data sources, with a static opinion
or a bias, just isn’t going to work. We have to get the right people in the
room. We are missing the community.
We used to work on populations; I think we need to work on communities.
Those contain real people. We have got to bring those real people to the table.
Let’s figure out first that is where I got back to PSA, what is even the
problem to solve. How can we even describe it to them, and what is the benefit
of solving the problem? That is how to get the right people to the table.
It is a fundamentally different audience. It is a different way of doing
business. We are going to produce different results. Hopefully those results
will change as society changes, but honoring the values that are static and the
motivations that are static.
MS. MILAM: I am sort of building on what Paul was talking about, as well as
everybody else. I agree; I think we do need to think about dissemination and
what works for people. I think yesterday’s discussion about the risk analysis
is perfect. When you think about a long guidance document on a website that
isn’t ready to be used, we need something that is like an app that a security
person or a physician in a small practice can take around and input answers on
the phone. At the end of the day, have a full report.
We also, I think, are at different places in our goal for this workshop. I
think we need to get together as a group on it. Is it to facilitate appropriate
use of data at the community level, appropriate use and disclosure, at the same
time protecting privacy? I think we need to get really clear on what the
drivers are, so that we have agreement on how privacy and security is used, and
what they should be used for and what they shouldn’t be used for, and what is
the overriding goal.
The right people. When we talk about concerns of bringing the same people
back or bringing new people, I think we need to look at the groups that we had
at prior hearings. When you want to look at true innovations in privacy and
security, we had a few people who could speak at that level, but not that many.
We need people who have true expertise in that area.
It may not be the communities doing this work. It may be people specializing
in that area who work with some communities. I think we need a deeper dive into
some of the interesting approaches that are happening now. We need to be clear
on what our goals are, and then look at how can this information be used in a
way, by the people who need to apply it now where we have some of the biggest
gaps.
DR. FRANCIS: Sallie, you said it better than I could have. I will just
emphasize that we can’t answer all questions through the workshop. Our focus is
on the kinds of questions that Sallie was discussing.
MS. MILAM: I will just throw out an example because there has been some
concern, a way to approach it. We have heard this repeatedly from different
people who have testified. Wouldn’t it be wonderful to have a standardized data
use agreement? That would be one for people releasing the data at the community
level. They do some of their own data collection. They use a lot of data that
does not have identifiers, and they have some with identifiable data.
If we had a standardized approach or a standardized data use agreement, they
would know generally what they would be agreeing to. People could use it as
release data. There could be apps built around it so you could see what the
discreet list of controls are and whether you are meeting it or not. It won’t
be perfect, but it gets communities a lot further down the road than sort of an
amorphous concept with constructs that are not tangible and something that they
can make real.
DR. MAYS: I think part of what we have to struggle with is being very clear
about who the audience is. We keep saying the community and responding to the
community, and bringing the community back. What you are talking about is a
different group. I think that may be the confusion. If we are trying to answer
the community’s concerns, that is going to be different than answering the
concern of the people who release the data to the community.
I think we have to be really on point with what group we really are trying
to help. It may be helping the community helps the group in the middle and not
going directly to the community.
MS. MILAM: The community will be signing the data use agreement. They are
already agreeing to all of these things that they may or may not understand.
DR. MAYS: That may be an education issue later. If we are going to get to
Leslie’s notion, we can’t be all things to all people, then we should say,
where is the greatest impact that is really about our role? It may be the
middle and not going to the community.
DR. TANG: I just want to bring it back to privacy. This whole Facebook
thing, as you know, that may have been one of the biggest, quote, threats to
privacy that wasn’t necessarily recognized initially. The fact that they are
going to Snapchat, which is a comment on privacy, you almost think this whole
digital world and social media, there is no freedom of speech anymore. Meaning
you can say something and not live to regret it.
Snapchat is a way to actually give you back that ability to say something on
your mind without having it live without change. There is a learning in there.
The market has data, too, that we should learn from in terms of is that the new
way of protecting privacy, make it go away? That would be dangerous in a
medical sense.
What can we learn? What is the crowd source learning here? That is a very
important thing that just got taught to us.
DR. GREEN: I have got two quick comments to make. Then, I am going to ask
Marjorie for comments and help us wrap this part. The first comment is I don’t
think there is any need to go back over this again in this level of detail when
we look at the way standards and populations want to participate in this
workshop. We don’t forget what you have already said, and don’t feel like you
need to say it again.
The other thing is an idea that I think would help us around who is this
for, what is the community, all this sort of stuff, everything has changed
except the way we think about data. We have got this out on the table and
everything, this simple idea of a community of solution. The community of
solution was defined in the ‘60s as the group of people that must work
together to solve the problem. I think if we could adopt a broad-reaching
notion that this is territory that we do not know what to do in really. We
don’t know how to get this done.
We are looking for the people who, if they come together and work together
on this, can solve a very important data use/acquisition use management linkage
set of problems that has unbelievable potential for actually improving
individual and population health. If we could just figure out how to enable
this. The issue of do we want an expert in privacy versus a community
organizing folks that has been working on the ground in a neighborhood for 14
years at the table; my answer would be yes. That is a really good idea.
One more last thing and I will hush here about this. I want to ask that
there be a direct request of NIH, probably through NCATS, where the CTSAs and
their community engagement work is now located. They have been at it for seven
years; there are 60 of them. About 40 people get on a phone once a month that
are trying to do, at the community level, what we are talking about. There are
literally hundreds of them.
It is not our usual suspect where we go, but NIH has been pretty darn smart
here in trying to learn how to do translation research. Their objective, very
clear. They want knowledge, hard-won scientific knowledge to actually be used
on the ground for real people at the community level.
They have been struggling with it, too. This is hard, really hard. We would
be remiss if we don’t have some sort of engagement through our liaison there or
whoever as we set this up. In finding out who are the right people to ask, you
will find some of the right people to ask, I guarantee it.
MS. GREENBERG: I have so many thoughts, and I have been writing them down.
As you all speak, of course I get new thoughts, which is why some of you keep
putting your cards up. That is certainly the characteristic of an E, which I
clearly am, that you are stimulated by other people’s thinking. That is a
characteristic of the committee, I think.
I really appreciated what Paul said. I have seen people change over the
years. Every single person who is on this committee is named to this committee,
is appointed to this committee because they have a strong reputation, probably
have strong opinions, strong foundation for the way those opinions are based.
Yet, I see people changed by the committee. That is one of the reasons I have
loved the experience.
I think it is interesting, as you get older, to me in the workforce, one of
the great privileges is to mentor people. That is not really teaching them
things. They can get that from a lot of different courses and everything. To
just try to share with them what you have learned.
One of the key things I have really learned through my life is that life is
not linear. Yet, we act as if it is. We have tried to develop roadmaps and
frameworks and everything else. We are doing that right now with a vengeance.
At the end of the day, it just isn’t linear. You need these sort of skills
to deal with that reality. You can go ahead, thinking that it is going to be
linear, but you have to know in the back of your mind that it isn’t really, or
may not be.
You are really talking about trying to develop an organic process in a
federal advisory committee, which is a very kind of linear or structured kind
of concept.
MR. SCANLON, J: All of our agencies have been struggling with this. It is
just tough to do. Folks have spent a lot of time and money developing tools,
developing programs and everything else. It goes back to the sort of model
cities programs back in the ‘60s and ‘70s. It turned out to be linear
thinking to an organic problem. It was disastrous in many cases.
It is very organic, though there are linear steps in it. That is why you
approach it in steps. There is not a grand solution. You sort of go where it
takes you. I think that is where Marjorie is going.
MS. GREENBERG: That is where I am going. The two of us are a team for a
reason. If there is any advisory committee, I would say, and of course I don’t
know all of them, but I think your durability maybe supports this, that could
try to be organic, or to try to take this on in an organic way, these issues, I
think this is the one who can, with obviously proper resources and help.
In my mind, yes, we have been working very hard over the last number of
years to converge, to bring things together, to not have silos of
subcommittees, but to still have subcommittees. Those subcommittees are still,
at the end of the day, where the work gets done. I have been very strongly
committed to keeping those subcommittees.
At the same time, I think we have to let the subcommittees within general
parameters, follow their path, follow their passion, keep coming back, have
cross participation, cross fertilization. Then, see how we can sort of bring
this all together.
It is not possible now, I think, to know. I am also sitting here thinking,
all right, we have got the continuum and the framework and everything that Bill
was talking about yesterday that really resonated with me. At the same time, we
have got the stewardship framework which definitely resonates with me, with
what you are talking about, which is what this is based on. Then, we have got
the roadmap, which we were talking about at that very early hour this morning
of the health information standards roadmap. Do we have too many visions, too
many roadmaps, too many frameworks?
If we can live with that uncertainty, I think we have to. Let these
different activities go forward, not try to micromanage what each subcommittee
and the working group wants to do. It is a challenge, but make sure that you
are communicating and leveraging each other’s work. Then, see where this comes
out.
At the end of the day, Vickie is absolutely right. Will it play in Peoria. I
am blanking on his name, but we had a member – was it Lester Breslo – everyone
who is anyone has been a member of this committee. When he was on the
committee, he would paraphrase Tip O’Neill, that all health is local. At the
end of the day, we are sitting here in a building leased by the federal
government with federal staff and have federal advisory committee and all of
that, at the end of the day it is true. If it works for communities and people,
that will be the test. That is a big challenge.
I am almost picturing some kind of an app, but apps won’t even be the thing
by the time you bring this together. I guess it will be some other thing. I am
picturing not so much reports, but sort of layered things, something on the
web, that you can dive into and dive out of and link into and all of that, that
might come out of this. I think that how it is going to be packaged and
disseminated is just really important. That is something that you have got to
keep on your horizon.
I wouldn’t commit to exactly what the products are going to be. I say yes,
you need to learn from communities. You need to learn from what is going on.
You still would need to do traditional letters and reports to the secretary. I
can tell you, you have always had a broader audience. We did actually
promulgate one version of the UHDDS. Then, we updated it, and we have the core
health elements and all that.
They had much more impact than just some regulation that said you will use
this. This committee has always had a much broader audience. Of course, your
principal, the person who makes you be here, that allows you to be here, is the
Secretary.
I don’t know if that all hangs together. I guess you just have to be willing
to live with uncertainty. I think the goals, what you want to accomplish,
there’s pretty good agreement on that, so go forward in a non-linear linear
way.
DR. GREEN: Remember that, a non-linear linear way. I suggest that we finish
off this slide and take a break.
MS. KLOSS: 2B is a version of advancing the stewardship framework that is
directed more toward public health. What we don’t know because we are pretty
comfortable with organic and moving forward in uncertainty, is that what we
learn in step one may suggest that this is one set or it may be diverge, or
there may be areas of convergence and areas of divergence. That is why we
called it 2A and 2B. We just thought proceed with gathering the data and
analyzing the data, and see how it bests shapes out.
I think tune in in February and we will have a better idea. I think this
will come into focus. I don’t think we would presume to exactly know. I think
we have put the report word in there because we were talking about products.
That seemed to be one of the obvious products. I am really wide open. I think
we are really wide open to what insights we gain along the way.
I have always believed that any strategic approach is messy, and you have to
tolerate that messiness. I also think that where we are at now with all these
convergent issues is that we have got to keep moving on multiple paths, and
then keep checking on them. That is the only way, because if we wait for the
new model to be far enough along.
DR. GREEN: Just let me comment. We will use Linda’s statement right there as
our operational definition about what we mean when we say we are going to have
to work as a committee of the whole for the next stretch of the road. That is
what that is going to mean.
MS. KLOSS: Number three is kind of a foot in today’s issues and a foot in
tomorrows. we were trying to bridge on a narrow set of issues that we had as
was evidenced by the accounting for disclosure some outstanding HIPAA-related
issues where we can, because of the construct of this committee, make a
contribution to that thinking. We have identified a couple of others through
the work of the standards committee, the minimum necessary issue, things that
are outstanding that would be helpful I think to the audience who are
struggling with compliance.
DR. FRANCIS: Some of that is OCR. We would be talking to people there about
what would be helpful.
MS. KLOSS: We think we have started an important new collaboration, a more
direct collaboration, with the Tiger Team through this exchange, and that we
ought to continue that. We want to attend as a committee to those near-term
issues that are confounding us today, but perhaps not right now on the agenda
for the privacy or the Tiger Team.
Second, we want to next year push the envelope. We don’t know what the issue
is, but we want a hearing later in the year on some emerging issue. We were
just talking in standards again about do we put the consumer facing health
information standards agenda on this roadmap. If so, what if we were to explore
issues of patient-generated data and privacy stewardship implications of that.
If we did that in privacy today, then we would have some insights that perhaps
would feed some thinking about where standards might be needed, where they are
adequate, where they are inadequate, where there are gaps, so again,
convergence. We didn’t try to figure out what that emerging issue is. We need
to give some thought to that. We really need some committee discussion about
that. We propose that would happen in February.
DR. FRANCIS: We would be looking forward to a hearing then potentially in
September.
DR. TANG: This raises the question we have had in the past about the pace of
our work, and it goes back to the change. You mentioned being linked up to the
Tiger Team with respect to, say, accounting for disclosures. There are two
workgroups in the IHIT faculty, one in standards. Consumer health and
patient-generated is one of those.
If we waited until the end of the year and develop our report at the
beginning of next year, it just won’t be relevant. It is very relevant now. It
feeds into whether it is HHS public policy or meaningful use. It is an issue we
have not addressed in HIPAA. It is sorely in need of this kind of work. It is
not going on right now in another FACA group. Why couldn’t we be relevant? That
would require timeliness, though.
MR. SCANLON, J: ONC has been interested in this. This would be the area next
to look at in terms of EHRs.
MS. KLOSS: We put it where we put it for bandwidth reasons, of course.
DR. TANG: Like everything else in the markets, the market won’t wait for
you.
MR. SCANLON, J: The other approach might be, if I could, Larry, tactics. I
am just trying to think in terms of bandwidth and capacity and scaling up and
scaling down, depending on what the priorities are. The other model we have
sometimes is to have a committee member as a monitor to these other works.
To be able to report and keep the committee informed where things are going
in patient-generated data. Even perhaps linking them with a workgroup, but
serving as the committee’s liaison here. Then, bringing back to the full
committee where the opportunities might be. That is just another model that the
committees use for when it is more monitoring developments and report it back,
and becoming eligible about what is there.
DR. TANG: If you look at the nexus of the work, what we have defined, and
again, this committee was ahead of the game, is community the importance of not
just individuals, not just populations, but community. The way you get to them
is by getting to them, the quote patient portals and PROs and patient-generated
data is the way to get what is on their mind and what is going on with them.
Then, you aggregate. If we want to ride that ship, then we have got to get
onboard really enough to make a difference in both the steering, as well as the
beneficiary of the work.
DR. GREEN: What is your reaction to Jim’s suggestion about the tactic to do
that?
DR. TANG: I think monitoring is one. Either participation, like we are doing
in the Tiger Team, or literally having input. That would require shifting of
time.
DR. FRANCIS: One of the things we need to know is what questions they are
working on. Who is the person to get in touch with?
DR. TANG: Christine Bechtel is the one on the policy committee. Devin is
always involved in the privacy side of it.
DR. GREEN: Let me press on this, Paul. I think you are suggesting that under
item 3, the emerging issue thing that you are saying that it is already
emerged. You are articulating another target to put in that lower box. Over in
the far column, you are talking about explicit engagement. Not maybe, really
decide that that needs to happen; is that correct?
DR. TANG: I think the consumer, I forgot what it is called, but the consumer
engagement may be the workgroup, is thinking about the standards issues, the
what kind of data, how to incorporate the EHR. I don’t know that they are
specifically addressing the privacy aspect. It is a very nice complement, but
it has to be done soon. By the way, they are having a hearing. I don’t remember
what day.
DR. FRANCIS: I would also say that I have already been in touch with Devin.
Since the privacy committee met yesterday, she was on the phone. As a follow-up
to the input that we had in a general discussion about accounting for
disclosures, some of the issues that came up like what are alternatives about
internal, so development of audit capability and some other things.
Devin is already in dialogue with us about what they have done, what they
haven’t done, and where we might be helpful. This kind of model of working back
and forth is very much in place. We are intending to make it as robust as
possible.
DR. GREEN: We are going to take a genuinely short break, as in five minutes,
and then reconvene.
(Brief recess.)
DR. GREEN: Dr. Bruce Cohen is at the microphone with slides up.
DR. COHEN: We are not as far along in refining and making explicit our work
plan for the populations Health Subcommittee. We have identified three tasks
that we need to start on immediately. The first task is really more a
facilitation role to help us develop what I am calling now an organic dynamic
unified framework that cuts across all of our activities, recognizing that we
each need to pursue our own separate agendas, but they need to be more
integrated than they ever have been before.
In order to sort of operationalize the framework that Bill proposed
yesterday, we are going to convene a workgroup with members from all of the
subcommittees and the date workgroup to begin trying to flesh out this vision
for a unified framework moving forward.
That is one activity. We hope to make progress. We hope to talk, I think,
weekly or at least fortnightly between now and February to move forward and
have something to present to the Full Committee at our February meeting.
Before I move on, any thoughts or comments about that? People like Bill
yesterday identified some folks; I have talked to other folks to be involved in
this process.
MS. KLOSS: Would it be possible for that workgroup, I know you are going to
take notes and kind of move this along iteratively, could we use SharePoint to
just drop in the latest version of that? So those of us who aren’t on the
workgroup can kind of check in every once in a while and see where it is going?
MS. JACKSON: That is already happening. Debbie, the last communications call
that we had for Populations, as soon as we developed the notes that same day,
they were put in SharePoint. The whole thing is to let everybody know. At the
end of the discussion, for logistics, I will communicate that as to how we can
stay better organically involved in a communicative way.
DR. COHEN: We should talk about staffing and support for this activity at
some point; maybe we can do that later.
DR. GREEN: How about now?
DR. COHEN: Great. Is Tamara still here? You missed yesterday. Is Tamara
going to continue?
MS. GREENBERG: Tamara had an emergency, as did Michelle. It is a certain
poltergeist in the atmosphere. It may be related to my retirement; I don’t
know. Gas leaks and plumbing disasters and flooding, so that is why Michelle
has been on the phone since Tuesday while the gas company is tearing up her
front yard. Tamara had a flood.
We do have Tamara and, of course, Debbie. What you all have to appreciate is
the main challenge Debbie will have is that she doesn’t have a Debbie. I have
obviously benefited from that. Jim, I know you have a new staff person you
thought might be able to work with the subcommittee.
MR. SCANLON, J: I hate to put our new staff members on it just because you
sort of have to know a lot. We will find you somebody; we will find you another
person.
DR. COHEN: Susan actually has been working with us some. It would be great
if we could have some of her time, Susan Queen, in part of these activities.
MR. SCANLON, J: I am looking at ASPE or other places to see. I think it is
nice, but different ways to do it, but not necessarily the brand new people. It
just doesn’t work.
MS. GREENBERG: What we need to do is parse out what the different things are
that are needed, and then figure out a plan.
MR. SCANLON, J: It is hard to staff without knowing, that is exactly it,
what the products are.
DR. COHEN: I spoke briefly with Bob Kaplan yesterday. I would love to pull
him back into this and other folks to connect who are interested in population
on community-based issues. I would like to do more outreach to them and get
them involved in what we are doing.
DR. GREEN: What I am hearing is that the population subcommittee will
assemble a workgroup that is probably going to be meeting about biweekly
virtually to do further formulation of their 2014 work. Immediately, they will
enjoy Debbie and Tamara’s support to get that done. When this sets up, as it
will, and you can see what the work is, we have commitments from the agency
here to work with the Susans or someone else that is designated. Is that
correct?
DR. MAYS: Susan Queen and I had actually identified some staff at HRSA and
SAMHSA, so I don’t know quite where that is and what the next step is, so if we
could pursue that. Also, if we can ask Rashida, who is now at the Office of
Minority Health, if she would be interested. She used to work in ASPE. How do
we proceed?
DR. GREEN: What I would suggest is any of you that have ideas or
suggestions, I think you bring them to Debbie.
MR. SCANLON, J: Give them to me. If you have worked with folks previously in
HHS, we can normally get them.
DR. COHEN: Two other short-term tasks, one is Jim you talked in your initial
report about the data council. It sounded like they were pursuing similar kinds
of things that we are interested in, with respect to the continuum of clinical
through population health data.
First of all, we would like to update the data council about what we have
done around learning systems, and hopefully at the January meeting, report on a
preliminary idea of where we are moving in this space to make sure that we
coordinate with them. Probably just me, if that is okay with folks, and maybe
Bill if he is available, too, or somebody else.
DR. GREEN: Why don’t we let your schedules and availability of when this can
happen?
DR. COHEN: We had actually talked earlier about this.
MS. KLOSS: I am available.
DR. COHEN: We will work it out however works best.
DR. GREEN: Just wrestle us to the ground. We are going to come back as a
committee in February. Instead of having these vague notions that were not
necessarily coordinated in alignment with the council, those are going to be
resolved, and they will be reported to us.
DR. COHEN: Yes, sir.
(Laughter)
DR. COHEN: We also identified an immediate activity that we want to begin as
we are working through developing the framework, which is we called it making
the case for convergence or the continuum. It is really an environmental scan,
or understanding the background for this evidence-based proposition that we
need to better connect our understanding of all the elements around the
framework that we discussed.
We need to define, and Susan Kanaan I hope will lead us and I would love to
rely on a variety of folks to provide us input about what they know is already
out there in the literature, or exists on websites, or current projects,
certainly in the federal sector and certainly in the community non-federal
sector.
Our sense was there isn’t much out there that really talks about the
convergence of population health, mental health and clinical health. Larry
suggested formulating key basic questions. We talked about defining what the
scope of the activities will be that connects these data streams.
The focus here is how are these data connected? I always go back to Paul’s
comment, defining smoking by a clinician is very different than defining
smoking using the National Health Interview Survey. If we are talking about
smoking, we need to understand the different definitions or how people use that
concept. We want to look at the literature, and do an environmental scan to see
if anybody has really worked in this space.
For us, it is really important to include mental health as part of this
continuum of clinical and population-related health issues. At the level of
community, I would love to expand to a broader concept of public health. We
heard some testimony at the standards committee that nothing will ever change
with respect to improving the health of communities if we don’t consider
education and housing and transportation as part of the public health agenda.
I think it is time in our exploration of this continuum to think more
broadly about how communities view their health. I think this does have
implications also at the other end of the continuum for providers and
clinicians and patients and consumers, think about what their needs are, as
well. I don’t want to jump fully into the deep end with a bag of rocks tied
around our feet. I think if we are going to begin this exploration, we need to
do it expansively and broadly.
DR. GREEN: You are going to slip into the pool with Susan Kanaan joined at
the hip with you, right?
DR. COHEN: Susan, are you on board here?
MS. KANAAN: (Off mic)
DR. COHEN: Clearly this framework touches Standards, it touches Privacy, it
touches the Data Workgroup as we build this framework. I understand the need
for being flexible and dynamic rather than rigid and structured. I think it
will guide our work as we move forward.
I don’t want to lose the focus. Really, the light bulb that went off for me
this morning is when we think about what we do, we need to think about the
audiences that we are targeting with our messaging. I think as we evolve into
this NCVHS 4.0, our dissemination and messaging strategy needs to keep up to
date, as well. That is really part of our evolution. I would like to build that
in.
DR. SCANLON, J: Again, our hook is the data or the measurement side of it.
DR. COHEN: Yes, it is all around data, the data available to different folks
for all these different purposes.
DR. TANG: We talked about community population. I wonder if there is a way
through data to get at communities or some communities. Some of the
demographics, particularly the new demographics, so people can go we focus on
geographic, and we talked about how county is really too big. Maybe a Zip Code
is not totally unrelated, but your ethnicity, your race, your language could be
a different kind of community, if different populations, and then, it addresses
the last mile.
You have to be pertinent to the last mile, or they would only engage and
come back. It doesn’t matter what you write about, the them, when it is not a
them that identifies our definition of community and related folks.
I don’t know everything that is in the public health data sets, but the more
we could put that are relevant to real people who think of themselves as part
of some community, the better. It could be a church group or something. Now, we
wouldn’t necessarily know that, but maybe it is knowable. It is trying to get
relevance so that you can get action by the people who are most involved.
DR. COHEN: Great point. I think when talk about geography, for me, the most
relevant unit is neighborhood, and thinking about generating neighborhood data
serves the geographic community. You are right; there are communities affinity
for whom we need to figure out how to send messages directly in targeting them.
A perfect example is in Massachusetts, our tobacco control, we realized
through our detailed surveys that Portuguese speakers had a much higher rate of
smoking, the way we define it in public health, than other communities. That
really changed our tobacco control and messaging enormously to not only
generating messages in Portuguese, but there were several different Portuguese
groups.
The Brazilians have very different targeting needs than Portuguese who came
from the Azores in the mainland. That is a perfect example of understanding
community so that we can reach them better.
DR. TANG: I think that is the new way, both the effector arm, but the affect
arm from a data perspective. You mentioned neighborhoods, I don’t know that we
know what neighborhoods are in California anymore. I don’t know how relevant
that is today.
DR. COHEN: That is a great comment.
MS. KLOSS: I live in a ’63 story condominium building, and there are
probably four neighborhoods within that building when you think about the
demographics.
DR. TANG: That is so last century, so yesterday.
DR. COHEN: My urban northeast bias is showing, I apologize.
DR. GREEN: Let me try to wrap this up.
MS. KLOSS: Is Population not intending to do anything further with the
output for the roundtable last year? We had the technical and the tools group,
and we had identified a number of products that came out of that, that the
group were asking for. Is that just off the table? If so, how do we close the
loop with all of those folks that invested their time?
DR. COHEN: That is a great question, Linda. I haven’t really thought
through. Maybe we can discuss it in an executive committee, and think what we
want to do to move those discussions forward or wrap them up.
There are a couple of themes that emerged from the roundtable that will
certainly be incorporated into this work. The one that really resonated with me
this morning is we need to figure out how to meet the communities where they
are because none of our messaging or products will be valuable unless we really
understand how they can be useful to communities.
For me, there are underlying issues that emerged that will be incorporated
but with respect to products from the roundtable, I am not sure.
MS. KLOSS: I really see this as being a very different level of work.
MS. GREENBERG: I raised this yesterday, too. You mentioned a number of
agencies; we also engaged some people in CDC Atlanta, who have continued to be
engaged because they are working in the space of technical assistance for
communities. I thought Susan Queen had a very interesting finding in her
outreach that there certainly were people in these different public health
agencies and offices that were working with communities. It was very sparse to
find people who were really focusing on data and on the information issues per
se.
I hope you can continue that effort. I think that it involved some good
outreach to other parts of the department. It also, at the end of the day, I
mean, if there are these other different places in the department that are
working with communities, we want to align with and them to be aligned with
wherever the committee is going. I don’t know exactly how, but I hope that it
will be wrapped into it.
That is one of the things, I think, when you meet with the data council in
January because you will have representatives of all of the public health and
other agencies, as well, to engage them on. I think that is one of the asks
that we talked about.
MS. KLOSS: So much good work has been done on that. When I look at this, I
think what we are really designing a new framework for how the committee as a
whole thinks about its tasks, but to kind of lose the momentum on the community
engagement would seem a step backwards.
DR. GREEN: Thank you for asking the question and then getting it back on.
Let’s just see it up there, that number three spot, the follow-up proper
concluding of the workshop, of the roundtable. I think it is really clear what
is happening with the Population Subcommittee. The work of the committee as a
whole, and particularly the Privacy, Security and Standards folks.
Now, as that is sharpened, it basically includes stuff of intense interest
to our population subcommittee. It is in good hands, and it is moving forward.
What has happened is it has positioned the populations committee to do three
things. One is there is some cleanup work to do. Secondly, there is some
background work to do. Most importantly, there is some environing, planning,
development work to do that, instead of having a 2014 trajectory, it has really
got a five or six-year trajectory. I think we should understand it in those
terms.
Just from one man’s point of view, I am really glad that they don’t have a
tightly defined set of stuff to do other than that in 2014 because the other
work that the committee is going to be doing in 2014 is so pertinent and
relevant to how that systems approach and this broader vision of that
2016/2017/2018 trajectory. We have got a toehold there now, and we will expect
it to mature while we are doing this other stuff. Let’s go to Ob.
MR. SOONTHORNSIMA: Thank you very much. As we are pulling up the slide, I do
want to kind of frame up a little bit what I heard this morning and how far
along we have really come in only a couple of meetings, since June really. The
way I look at it is really the work between Standards, Population Health,
Security, Privacy and of course, Data Workgroup. We are so much more
synergized.
Work that seems to be much more orchestrated, congruent and coherent. Before
I get into my section here, I do want to frame up a couple of things. One, if
you think about the audience, and we talked about this yesterday, our audience
is quite diverse.
Clearly, it is the Secretary and HHS, but also the industry, the community
and the public. From the Standards standpoint, we really are speaking to not
only those audiences, but the implementers, the payors, the providers, the
agencies, SDOs. They are the ones who are enabling a lot of these changes. At
the end of the day, we are trying to impact changes to the patients and the
public population health, the communities, excuse me.
Before we get into detail, which I will do, I do want to frame up there are
four key areas that I think we, as a committee, have a domain of expertise, if
you will, or ability to reach out to experts, as well as our scope. When we
look at data as an enabler, we look at security, privacy and stewardship. We
also should look at that as an enabler. When you look at standards, we look at
the standards as an enabler. Lastly, when we look at regulations, mandates and
initiatives, those are intended to be enablers. Think of those four areas
because they are congruent, and that is what we are trying to solve. How do we
align those things effectively?
In the last few meetings, we have a few tools we were thinking about. One is
a roadmap. I actually think of roadmap as a tool to facilitate. Then, yesterday
we heard the framework for the data and the methods, and how you engage in the
solutions. Those are two tools that we could use to guide us, to hang all those
four areas together. That is why it is so congruent now and so coherent what we
are doing. It is really coming together nicely.
Then, talking about venues, how to collaborate. There was discussion a
little bit about is this a hearing? Guess what? These are the venues for
collaboration, input and feedback. That is what the committee does real well.
Whether we do it collectively, or we do it in a subcommittee fashion.
Ultimately, at the end of the day, our work product is really
recommendations, letters and roadmap. I would like to think that roadmap and
the framework is also our work product. With that said, I wanted to frame that
up because when you look at what the activities will be like in 2014, for our
subcommittee, some of these actually are crosscutting because they touch the
data, they touch the security standards and of course the regulations. These
are things that our audience is very interested in, especially the implementers
and the users of this.
Some of this shouldn’t surprise you. We have the operating rules, but let’s
start looking at the big items here. ICD10, October 1, 2014. Health plan ID,
you heard about that enumeration in October through November 2014. Then, the
adoption of that between October 1 of 2016 and November. Claims attachment, I
am not going to read through every single one of these. I am just going to
highlight the ones that are the most critical to us.
One of the things that we want to keep an eye on, not that we are going to
do anything actively, is really just to monitor the health care reform ACA
health insurance exchange implications, the standards for example, 834, 820. I
don’t think we are going to be doing anything actively; we are just going to be
monitoring at this point. It is too soon.
Of course, the last item we heard from Denise’s comment about the ACA review
committee. This is a mandated bylaw in ACA. We will have this resolved
hopefully in the very near future. CMS is looking into this.
Very quickly, busy slide, but these are the topics that are tactical. I do
want to look at a couple of things. Participate in the framework development;
this is the area that is most strategic for us. This is part of the developing
of the tool. Everything else is what we have to do as a committee. I am not
going to read through this; you have a copy of this.
In February, what we like to do is look at some of the admin simplification
requirements, but also since ICD-10 will be adopted in 2014 in October. In
February, we can probably do a review as to how things stand at that point.
Then by that time, hopefully we will have a resolution around ACA review
committee. We will have ongoing collaboration population health. This is where
crosscutting activities will come into play. This is something that we have to
coordinate with you, Bruce, and of course, care and privacy, as well.
We will have letters. This is not set in stone yet, but this is what we are
hoping to do is get a letter on public health data standard hearing. We had a
hearing on Tuesday. Completion of HIPAA report, you heard about that this
morning.
Lastly, ACA review committee proposal. The second quarter, we will continue
to do our work on e-Health vision. By the way, we changed the name from
e-Health, excuse me, I didn’t change this slide, to health information
standards roadmap. When we come up with that roadmap, we will call it Marjorie
Lane. You like that?
MS. GREENBERG: It has always really irritated me being married to a George,
and everything is named after George, and very little is named after Marjorie,
so I would really appreciate that.
MR. SOONTHORNSIMA: Again, the last bullet point, participate in framework
development. This is an ongoing activity, but we really want to put this on.
Even though we have a very busy required activities to do, but this is one
thing that we feel is extremely strategic and important for us. That way, we
again support the committee as a whole.
In June, we will have a hearing on an admin simplification. This is a
standard meeting that we would have, and follow up on any ICD-10. I am sorry,
this is worker’s comp and P&C industry for ICD-10.
MS. KLOSS: We would have moved the ICD-10 up, so it would come off of here.
MR. SOONTHORNSIMA: We may have some follow-up. Let’s see, if there are any
action items coming out of the ACA review committee, we will be talking about
that. That is why there is a question mark for the letters and reports. Third
quarter, e-Health vision will continue. By the way, let me just comment. We do
want to have a follow-up on e-Health vision and standards roadmap.
Again, this is the health information standards roadmap. The industry has
come together and helped us back in September. The sooner we provide some
guidance, or at least early sort of paper, that way they can react to. That is
why we are thinking about having a hearing on this early on. Excuse me, I
misspoke. This is really public health standards.
We want to send something out, and we haven’t figured out when we are going
to do that yet because we will have a follow-up, another roundtable in the
third quarter. We do want to send something out before that hearing or
roundtable discussion. We will have a finalized e-Health vision at that point.
Lastly, we continue the work. This is just from one quarter to the next;
there is nothing new in here. Then, finalized e-Health vision and roadmap, or
rather health information standards roadmap. I will pause right here. As you
can see, some of these things, as I said earlier, really hang well together
from the strategic standpoint crosscutting with Bruce’s initiative, Linda’s and
Leslie’s security privacy initiatives, as well. Feedback, comments?
MS. GREENBERG: Well, let me just ask a sort of procedural things. You have
your lead staff. We have two from CMS for the HIPAA report. We have other
subcommittee staff, certainly Michelle and others who are participating. We
heard from populations and we have heard from privacy about some additional
resources that they need. Other than keeping the current staff and organizing
the hearings, et cetera. Is there any other thing, any new need that you have
identified?
MR. SOONTHORNSIMA: Not from the staffing perspective. Alex will be
participating in the framework development evolution, so that is really a
collaboration effort. Other than that, the work product, the venues, the
meetings and so forth are already planned.
MR. SCANLON, J: Ob has mentioned the ACA review committee, so what we are
doing, there are a number of requirements that are included in that. We are
going to probably have a call next week. CMS has been looking at it. Some of
the provisions are pretty heavy lifts for an advisory committee. We are going
to kind of sort out what makes sense and how we can do that.
Again, we don’t want to take things that are impossible for an advisory
committee to do. There clearly are some provisions there that make sense.
Hopefully, we will resolve much of that in our call next week. We will let
Walter and Larry know.
MR. SOONTHORNSIMA: If you want us in that call, it is up to you.
MR. SCANLON, J: Let’s see what CMS says.
DR. COHEN: A couple of things. I love your convergence; it is great. With
respect to measure, some of the measurement issues that you got in the
standards, I think we really have an opportunity to push the work that happened
on Tuesday to really focus on population health content data standards. I would
love to work with you and figure out whom to invite, and how to generate a
workshop around that, and plan for that.
MR. SOONTHORNSIMA: We just talked about this. Yesterday, we got some
feedback from the committee. To focus on the roadmap, there are four
components. Administrative standards, clinical, population health and then the
last one that Linda talked about, sort of the personal health. That is the
scope. We wanted to narrow that scope down. Larry, that was your feedback, too,
make sure it’s not too broad and usurping others. We changed the name from
e-Health to health information standards. That is exactly the recommendation
from the committee.
DR. COHEN: Let’s talk about what makes the most sense in terms of whom to
invite and what it is we are trying to do. Again, in some places, there are not
enough content standards; in some places, there are too much. They are
competing definitions. I think this is an opportunity for us to have some
direct feedback. This is an example of where I think advising the department
and providing guides for the community coalesce in terms of value.
The other thing I wanted to bring up is I had asked Michelle to think about
doing for the entire committee at one of our committee meetings the
connectathon that she presented at NAPHSIS that displayed essentially how vital
statistics is dealing with issues of moving into the next stage around
transactions of data, both for birth certificates and death certificates.
I think this would be a really nice model and a wonderful learning for the
full committee, getting back to some of our vital statistics routes. It really
emphasizes basic public health data that crosses from clinical data from EHRs
to surveillance data, birth and death data, that ends up being used by
researchers and by communities as the basis for a lot of their activity. I
would love for us to figure out either at the February meeting or at a future
meeting how to stage that. I think it would be great.
MS. GREENBERG: Certainly, we have had conversations about it. Again, this is
one of the things that kind of fell off with the furlough. We need to know,
Debbie needs to know, I guess, if this is really something that the committee
wants to do at a meeting, and then how you would leverage it. It will take a
fair amount of resources to kind of duplicate or repeat the type of thing that
went on at a connectathon or at NAPHSIS.
It can be done, but I think that we might think in terms of it being some
kind of webinar connected to a meeting or something. I am just thinking of
getting the maximum benefit from it because it is a question of bringing in
vendors, bringing in technology, et cetera. It is non-trivial. If it were
trivial, it wouldn’t be worth doing, of course.
If this is something you want, then we will pursue it. I am trying to think
how it would do more. I don’t know that I personally could justify the expense
if it were just sort of to educate the committee. I am trying to think, if you
could leverage it, to be an educational and outreach type of event. Do you hear
what I am saying?
DR. COHEN: Yes. The vendors were there in full force when we were talking
about standards and clearly got it. The concern is public health with the
exception of immunization is not moving rapidly enough. I am trying to provide
the justification is here is a model of how public health can move forward in
standards development and transaction, and content development that all of us
need to consider in terms of the work that we are doing. I am trying to provide
a framework and its sense of value for where we are moving. You know how I feel
about it.
MS. GREENBERG: I think it should be discussed by the executive subcommittee
in the next call. I think if we do this, we would want to leverage it for a
broader audience.
DR. GREEN: I think we are teed up to adjourn almost. Now, Debbie has for
years demonstrated this knack of producing a work plan out of this that makes
it look like we knew mostly what we were talking about. I am assuming that she
will work her magic again on this. Just for fun, I think we don’t worry too
much about some of the old work plans and everything. We really draw a line,
put what we have done in this meeting in a box. We see that as what are we
going to do.
I have never seen Debbie get overly specific, but she does get as specific
as can be done given where we have gotten to. We can count on that. We can
count on an executive subcommittee call where we will do the follow-up for some
clarification work, that if she does that, she is going to want and need, and
what Marjorie was just talking about.
I think another thing that this last exchange reveals is also what I want to
build off of Ob’s opening comments moments ago. For all of us to see the
overlaps the Venn diagram type overlaps of all of the subcommittee work is on
the table and exposed now. You can see it. I would ask for a little bit. You
may have already made this, or it may even be just unnecessary for some of you
as individuals.
I would ask you to rotate your thinking away from feeling like that you have
got to figure out something for this subcommittees you are on to do, label the
subcommittee’s thing that goes on the chart somewhere. Instead look at now what
our plan is for next year about the events we have got on the table. As Ob was
asking, there are three or four areas to cover. Make sure that the area can be
covered, and let’s be efficient about that. Let’s load the train that we are
going to run in 2014. Let’s all accept responsibility to loading up our parts
of the issues. If there is a privacy issue there, let’s not say, well, we have
got to have a privacy hearing next fall or something. Let’s say, well, why
can’t we get it done there?
MS. JACKSON: What you were just saying, what I was planning to do by the end
of the year and check in with Marjorie, is communication is going to be a major
theme for us to move this forward. Just as you were saying from the linear
thinking to the multi-dimensional, because the overlay requires everyone
knowing what everybody is doing. You will, in addition to be getting polls from
your team, the specific teams where the work takes place, you will know where
everybody else is available, so we can plug into availability that way for
conference calls.
I am planning to send a notice to the listserv, an end of the year notice of
where the committee is and changes in executive staffing. At that point, we can
pull out and send them the link to the roundtable if that is something that you
want to do. Susan Kanaan is organizing an executive summary for that roundtable
that really helps pull it together in packaging. You have seen that.
Finally, the co-chairs have received our prototype for the website, an
updated website. We are going into a new year, a new look that Catherine Jones
has helped pull together. The executive subcommittee will have a chance to look
at that, and then hopefully pull something together for the full committee at
the next meeting.
DR. GREEN: Well, I would like to around the table, think of your three words
or one sentence, not the book, not the novelette, but the sentence or two about
reactions you are feeling right now at the end of this meeting. Anything is
fair game; a couple or three sentences is fine. We will start over there with
Lou.
Before you do that, I want to just observe and notice that one thing that I
am personally feeling here is I just heard a few minutes ago that Bill Scanlon
is not going to be able to be at the February meeting. Paul is a busy guy, and
he could wind up having conflicts, or might or might not be able to be here for
the whole meeting.
I have never been involved in an NCVHS meeting without Bill Scanlon and Paul
Tang, and I am not looking forward to it. I have this sense of anticipatory
grief that is just beginning to set in. Both of these men, I have been
privileged to have interactions with them way outside of NCVHS doing other
things. My admiration for them is complete. I just feel like I am being robbed
a little bit by the fact that they are moving on.
We know how to find you. I just want to personally express my gratitude for
the both of you for who you are, the way you think, and the way you interact
with us and the way you contribute. You are just role models of just what we
need on committees on this. I am enormously grateful to both of you.
MR. SCANLON, J: I mentioned, Larry, that I think Paul and Bill probably have
close to the record for longevity on the NCVHS. We actually had to, not break
some rules, for two terms, and in some cases, more than two terms. You guys
have set the record in many ways.
DR. GREEN: Lou, would you start us off here?
DR. CORNELIUS: The phrase that comes to my mind is organic, and I put a
hyphen next to that, as in shifting sand. I have really been enjoying this
whole idea that we want to be very careful not to put all the stuff in the box
because it is so much movement that is going on that is affecting our life
stream, so to speak.
DR. CHANDERRAJ: I am very privileged to be in the company of so many
knowledgeable people. They are all great people in great positions. I always
wonder why I am on this committee. I know my perspective is from the practicing
physician standpoint.
I think Paul alluded to several times to bring the end users in. I think the
end users are guided by two things, fear and safety. If you have them, invite
them here to bring to these people community people, the physicians, and let
them know that there is no fear or safety concerns for them. I think then you
will have a larger buy-in, and there will be a smoother implementation of what
we are trying to achieve.
MS. MILAM: For me, I think a theme might be phrased as planning for an
exciting future. We did a lot of planning for our work as a committee. We have
talked to Marjorie about her exciting future, about her retirement, and Debbie
taking the helm and look forward to that future, as well. Continuing to talk
and learn from Marjorie as she moves into retirement.
MS. KLOSS: Well, always learning underpins my feelings at this hour as we
are adjourning. I think I take away kind of an interesting new balance between
simplifying these complex issues, which is what we really trying to do by
illustrating and thinking about new models, and still plowing through the
complexity, but not letting the complexity discourage us. Trying to stay above
it while we are in the fray of it. It is a tough balance.
Marjorie, 20 times over the last two days, I thought, what if she hadn’t
just said that? We will really be resonating on that, what would Marjorie have
said? That will be the theme in February.
DR. COHEN: I do want to want to get a cutout of you and just put you in
place, if you are not physically there at our next meeting. That would be very
comforting to me. I feel like it is a blessing and curse to live in interesting
times. This is certainly where we are. If I needed several words to describe
this meeting, it is creative and generative and provocative. I am personally
excited. Losing the experience that we will be using will be incredibly
challenging.
MR. SCANLON, J: I learned long ago when you put smart people together, you
pick them carefully. You put them together in a room with some framework and
information, and you let them go. You really make a lot of progress, and you
learn a lot of things. It is really more than the sum of the individual
analogy. The committee has really proved that over and over again. It is really
one of our most productive committees.
I think you are right. I think we are looking ahead while many things are
fixed and predictable more or less. More than that, we are not exactly sure.
There are wheels in motion that we are not sure where they will lead exactly.
They relate to public health; they relate to population, to consumers to health
care and so on.
Again, I think flexibility and thought and thinking about what might happen,
even though we can’t specify, there is a fair amount of uncertainty and
ambiguity. It is an area where the committee has always helped us by, in many
cases, providing very detailed recommendations which have been immensely
helpful. In other times, just kind of framing an issue and noting what the
forces are, but not really knowing what can’t be predicted anyway.
We will miss Paul. We will miss Bill. Hopefully you will be here at the
February meeting, but hopefully we will see you again. We will feel free to
call you back to active duty when we need you.
MR. SOONTHORNSIMA: I haven’t realized either until now that Bill and Paul
would be moving on. It is a shock to me because I have learned so much. It is a
shock to me because I really feel to be privileged and honored to be working
and learning from these two gentlemen.
I do have a special word for Bill because in my short two and a half years
on the committee and on the subcommittee, Bill has always challenged us to
think beyond the tactical aspect of this. That is why some of the guiding
principles, Bill, I really want to attribute those to you, the transformative
aspect, when we talk about guiding principles.
He does challenge us. While from time to time because Bill has been so busy,
when he is not there on a call, in the back of my mind, I said what would Bill
say? What would Bill ask of us to think about? We will miss that, and we will
continue to think that way, Bill. I just want to thank you for your guidance
and leadership there.
Especially to mother hen here, we do love and will miss you. Thank you so
much for your guidance and leadership. We will continue to be friends. That is
one of the most important things. You are absolutely right. So many colleagues
talked about when you come to this meeting, you have dinner as family. That is
one thing Harry told me when I came onboard; you better go have dinner on that
Tuesday night. Harry made sure I would do that. I think I only missed one
because I had a meeting with my sister.
Three words, and I used these words already, coherent, concurrent and
congruent, excuse me. I think as a way for us, this is a nice send-off if you
will, a legacy perhaps of Marjorie and my colleagues, that I feel really going
forward, our roadmap, our tool, the working between the subcommittees, we are
going forward as a single committee. I hope this is a terrific send-off and
legacy, what you have started for us. Thank you.
MS. GREENBERG: I just want to say that one person who really has pushed
towards this on my staff is Debbie. It is a perfect handoff in that regard.
DR. FRANCIS: Just a personal comment, this is the first meeting. I have gone
to Standard Subcommittee meetings, and it was an absolutely wonderful
eye-opener, learning curve, all kinds of cool stuff.
My comment about the committee more generally is that I think a lot of what
has happened over the last couple of days underscores the importance of seeing
an advisory committee as facilitative as helping advance, develop, implement
kinds of thoughts and policies that can help with respect to what it advises
on.
Marjorie, the committee members who are leaving, Debbie, and all the staff
are to me just an incredible set of role models for that facilitative
enterprise. Thank you.
DR. CARR: My three words to summarize this meeting were really unprecedented
ownership, engagement and integration. As I think about departing members and
executive chair, in terms of integration, I think of Paul. We have spent our
entire, how many years, eight years going back and forth between lumping and
splitting. I think that has served us well in terms of integration.
In terms of ownership, I absolutely think of Bill because there are many
things that come before us that are complex. There would be perhaps a
possibility that we might think of tuning out from something. Bill has just
tremendous ownership and does not let us lose sight of the importance of every
word we say here, every word we write here. It has been a tremendous lesson for
me.
Then, in terms of engagement, I think Marjorie brings us all together. We
talked last night about her role as mom. You have taught us by your actions,
your knowledge and your passion, and you have made us better than we were, so
thank you.
DR. MAYS: I am going to do three twice, and if you know me, you know I don’t
do the rules. Embracing the future, but cherishing the past. As we have talked
about the work we are going to do, the future is very different than the way we
have been working in the past. That is what we are talking about, about where
we are going to go, how we are going to do it, how we have to think
differently. There is an excitement about that.
At the same time, in terms of thinking about cherishing the past, it is like
we have produced great work, very high standard, very high quality. At the same
time, I don’t want to throw it away with the excitement of rushing to the
future.
In terms of that same theme, I think it kind of captures the essence of the
people that we are losing. In terms of thinking about embracing the future, it
is like what I think about is that they are all out there in the world,
carrying this agenda. I can be very excited about the agenda that they carry.
What it is that I have seen here, in terms of Bill and Paul, is that they
really make a difference. I can count on the world continuing to be a better
place in a sense of that they are out there doing great stuff. I am happy that
I got to know you, and I am happy that I can tell people, talk to that person.
I am going to keep your work plate full.
In terms of Marjorie, I would say that embracing the future, I was excited
today when she said, I am going to go visit everybody. I thought Santa Fe,
L.A., I mean, I could just think of the things. It just reminded me of our time
in the museum, so I could just think of the things that we could get into. I
was like, oh, I don’t have to be so sad. I have this other thing to get excited
about.
At the same time, when I think about cherishing the past, I would have to
say that in general, my ability to operate on committees was really shaped by
my first time here with Marjorie. It took me a while to kind of get into the
kind of headset.
Even after leaving here as I went onto other places, it was like this was a
good model. Hopefully, I have come back a little bit different, and able to
make contributions shaped by the kinds of things that Marjorie would always
very warmly express in terms of trying to help you do what you want to do, but
know how to do it in a way in which it would make a good impact. I am looking
forward to the future, and I also will hold onto very wonderful memories.
DR. TANG: Last night, Marjorie talked about funerals, and now I get it. As a
lumper, and I guess you are going to have to write that in the job description
to the next person, I would summarize last night, I mean, Marjorie, we truly
are your family, and we truly love you. It has just been just a labor of love
and passion, and you just bring that out in us. Thank you so much for doing
that.
For the three words, it is Jim Collins – Who, Then What. Jim Collins’
book, Good to Great, Who, Then What. The who, I think we need to focus, we have
been focusing on is, the very who’s are the public. Those are the people we
serve. Based on that, we derive the what. I think this committee has been
uncanny in the way it has been able to figure out these what in a very
prescient way. All the things you cite, whether it is the three P’s, I mean,
those were years ahead of where the rest of the country came.
I think this community work has been very prescient in terms of these are
people in communities not necessarily geographies. That may be transformative
in reaching that last mile and the people we are trying to serve. I really
appreciate that time to spend amongst all of you in generating those thoughts,
in generating the whats.
The final thing is, how can NCVHS make a difference in a unique way? I think
NCVHS has been uncanny in the way it has been able to figure that one out, too.
Thank you for all the kind words that were unexpected. I just really enjoyed
and loved being part of this group, so thank you.
MS. GREENBERG: And you can come to the meeting in February.
DR. SCANLON, W: My phrase might be surprised by the coincidences. First of
all, I didn’t realize until yesterday that I was going to miss the February
meeting. I suddenly looked at the schedule, and it occurred to me that, gee,
this thing that was supposed to happen in October that didn’t happen because of
the shutdown, is now in February, sort of on those two dates. That was a
discovery, and it was a surprise.
It is also a surprise by the fact that Marjorie is leaving at the same time
that I am leaving, both of our last meetings. When you think about NCVHS, you
have to think about Marjorie.
Since we got into sort of so last century sort of today, my first term on
the NCVHS was in the ‘80s, and Marjorie was there. I think talking about
an era is really sort of an understatement. It is maybe like an age or
something like that. It goes way beyond sort of simple eras. That was a
coincidence that was a bit shocking or surprising.
The other one is just to go off the committee as you start off in some
respects an incredibly new journey because for me, when I came onto the
committee sort of back in 2005, it was like a new journey, too. It was very
different than it was sort of in the ‘80s. The discussions were about
different topics.
The first few meetings I was at, and maybe it was the first few years, I
felt everybody was speaking a different language, and I wasn’t understanding
very much of this. It was sort of hard to kind of think about how does one
contribute sort of to this. Maybe to your regret, I have opened up my mouth.
Justine’s kind words are that Bill was like a dog with a bone; he doesn’t give
up.
There is an element of truth in that. I don’t know sort of whether or not
some of that has got to do with the fact that I do live in Washington. I am
very sensitive to the issue of sort of what government does and sort of the
perception of what government should do that comes from across the spectrums
here in Washington. We hear about it all the time. Maybe it makes us very
sensitive to it.
I think given that this is an advisory committee to government, it is very
important that when it advises government, it is doing something that is sort
of cognizant of the power that government has, both for good and for bad. It is
also cognizant of sort of how that is going to be perceived, sort of more
generally. We do need government. Government can be undermined by mistake, as
we have all seen on various occasions. That has been sort of an overriding kind
of approach.
I will miss all of this. This has been an incredibly enriching experience
for me. I wish you all well, and thank you for all the kind words.
MS. JACKSON: I have three words that come from my favorite musical, A Chorus
Line. That is what I feel that we are all a part of. When I interviewed with
Marjorie after she got through all of the particulars of my background, I had
on my resume my theater material. That was always a concern. Do you or do you
not include material like that? I will always remember that when she got to
that, both her and Katherine, that their eyes lit up. It was like, oh, you do
theater? That was my statement, that was her letting me know that she would and
could, accept all parts of me, so let’s dance.
DR. GREEN: Well, my words for it would be graduate seminar with passionate
enlightened empowered individuals. You have to pay attention at these meetings.
I am really grateful.
I would like to give Marjorie the next to the last word here and see if
there is anything she would like to say.
MS. GREENBERG: I almost lost it last night when my husband invoked my
mother, but it all just made so much sense. You all know my children, my
grandchildren are very important to me, and the family idea of this committee
and of my WHO work, too, and of our staff. I am this mother figure, and I am
like why am I this way? I never completely figured it out until he mentioned
it. He said last night, I mean, I had the most incredible role model in the
most incredible mother that anyone could have ever been blessed with.
Last night was just such a special evening. I thank you all for it, and I
thank Debbie and Katherine who organized it. To give me that opportunity for my
husband to make that statement was just kind of really the icing on the cake.
I, now at the end of my federal career, understand how I got this way. That
was very helpful. I think I understand the past a lot better than the future. I
think that, as we have all said, there are just lots of unknowns. There are a
lot of unknowns for our country, for this advisory committee and for me
personally. I have been so focused on my pre-retirement that I haven’t focused
tremendously on post-retirement. I hope for myself, and I know for the
committee, and I also hope for the country, that we do have a true north. That
is not an unknown. That will guide us.
I want to end with my comments because I have already said enough. In fact,
Clem McDonald mentioned to me last night that I was loquacious. I said, well,
is this news? Also, I said is that bad? He said no. I attributed it to the sour
apple martini that I had drank.
It is very interesting to me that when I really want to, my last sentence
that I want to say comes from a non-native English speaker, a very close
colleague of mine through the WHO work, who is from Brazil. She is always
apologizing for her English, although I assure you it is much better than my
Portuguese which is non-existent.
She wrote me when we couldn’t go to the WHO meeting. She wrote me some
things, and she included this sentence. I think this really applies to the way
I feel about all of you and about the committee. She said, I believe that this
is a connection that lasts a lifetime. Thank you.
DR. GREEN: We are adjourned.
(Whereupon, at 12:23 p.m., the meeting was adjourned.)