Transcript of the November 13, 2013 NCVHS Full Committee Meeting
[This Transcript is Unedited]
Department of Health and Human Services
National Committee on Vital and Health Statistics
November 13, 2013
National Center for Health Statistics
3311 Toledo Road
Hyattsville, MD 20782
CASET Associates, Ltd.
Fairfax, Virginia 22030
- Call to Order, Welcome, Review Agenda – Dr. Larry
- Updates from the Department
- James Scanlon, ASPE
- Denise Buenning, CMS
- Laura Rosas, ONC
- Rachel Seeger, OCR
- Laying the Groundwork – Status of NCVHS Activities
- NCHS Update – Charlie Rothwell, Acting Director
P R O C E E D I N G S
DR. GREEN: Good morning. Welcome to the next in a long line of NCVHS
meetings, a very special unusual one of a kind NCVHS meeting for more than one
reason. It is really delightful to see all of you here. I regret that everyone
in the room does not get to ride over on the bus with the committee members
that are being carted from some place in the world to this place because it is
like a meeting unto itself.
We will commence as we usually do. Let’s run the table if people would
introduce themselves and declare any conflicts of interest. Who are you? Where
are you from? Do you have any conflicts? Michael, do you want to start us off
DR. FITZMAURICE: Michael Fitzmaurice, Agency for Healthcare Research and
Quality, liaison to the Full Committee, staff to the Subcommittee on Quality,
and the Subcommittee on Standards.
DR. CORNELIUS: Good morning. Lee Cornelius, Llewellyn for the record, member
of the committee and member of the Subcommittee on Population Health. I have no
DR. CHANDERRAJ: Raj Chanderraj, practicing physician, member of the
committee, and member of the Subcommittee on Standards.
MS. MILAM: Sallie Milam, West Virginia Health Care Authority, member of
Privacy, Security, and Confidentiality, member of Populations, no conflicts.
MS. GOSS: Alexandra Goss. I am the Pennsylvania Health IT Coordinator, the
Program Director for the Pennsylvania eHealth Partnership Authority. I am on
the Standards Subcommittee and the Full Committee and I have no conflicts.
MS. KLOSS: Linda Kloss, Health Information Management consultant. I am
member of the Full Committee, co-chair of Privacy, Confidentiality, and
Security, member of the Standards Subcommittee, and no conflicts.
DR. COHEN: Bruce Cohen, Massachusetts Department of Public Health, member of
the Full Committee, and co-chair of the Population Subcommittee, no conflicts.
DR. SCANLON: Good morning. Jim Scanlon. Deputy Assistant Security for
Planning and Evaluation at HHS and Executive Director of the Full Committee.
DR. GREEN: Larry Green, family doctor from University of Colorado in Denver.
I have no conflicts. I am a voyeur on all the subcommittees.
MS. GREENBERG: Good morning and welcome to NCHS. I am Marjorie Greenberg
from the National Center for Health Statistics, CDC, and Executive Secretary to
MR. SOONTHORNSIMA: Good morning. Ob Soonthornsima, Blue Cross and Blue
Shield of Louisiana, member of the Full Committee, co-chair of Subcommittee on
Standards, no conflicts.
DR. FRANCIS: Leslie Francis, University of Utah, member of the Full
Committee, and no conflicts and co-chair of Privacy, Confidentiality and
DR. CARR: Justine Carr, Steward Health Care, Boston, chair of the work group
on HHS Action and Use.
DR. STEAD: Bill Stead, Vanderbilt University, member of the Full Committee,
co-chair of the Population Health Committee, no conflicts.
MR. BURKE: Jack Burke, Harvard Pilgrim Health Care in Boston, member of the
Full Committee and member of the Population Subcommittee and the Privacy,
Confidentiality Subcommittee, no conflicts.
DR. MAYS: Vickie Mays, University of California Los Angeles, member of the
Full Committee, member of the Population Committee, and member of Privacy,
Security, and Confidentiality Committee and I have no conflicts.
DR. TANG: Paul Tang, Palo Alto Medical Foundation, member of the Full
Committee and the Privacy and Security Subcommittee, no conflicts.
DR. SCANLON: Bill Scanlon, National Health Policy Forum, member of the Full
Committee and the Standard Subcommittee and no conflicts.
(Introductions around room)
DR. GREEN: Do we have people on the telephone? Okay. I direct your attention
to the top of the agenda that states the purpose of the meeting and would just
like to characterize it just a little bit. A number of committee members over
the last two meetings during and after and in between those two meetings
requested more opportunity for discourse, communication, conversation and
discussion of what we were learning and hearing.
I would ask everyone to look at the agenda from a slightly different
perspective than the way we have done them before. I see this as a fungible
agenda with some flexibility built into it with a critical goal being to
consolidate the entire committee’s understanding of the current status of our
work and the three themes that we have been pursuing since August 2012.
Another way to think about it that may or may not work for some of you is a
deliverable for this NCVHS meeting is common ground, a good understanding and
sense of the common ground about how our work converges and comes together and
how the different groups, the work group, the subcommittees connect to that
common ground and have a shared sense of direction. And then narrowing that
just a little bit we aim to by the time we adjourn tomorrow by noon to have a
pretty clear understanding amongst all of us about what we are going to be
doing in 2014 and as much as possible, having lined up who is going to do it
and how it is going to be staffed and that sort of stuff.
There was a second request that this has been — I used to make this comment
and then you guys have been making this comment back to me about the fire
hydrant of the opening session. It is amazing, but it comes. The time is used
up and there was very little chance to ask questions and that sort of stuff. We
have urged our presenters today to feel like they can use their own discretion
about what is important for us to hear and that sort of stuff.
You can see on the agenda we are trying to get done between now and ten the
presentations from CMS and privacy from ONC and the OCR and also the ONC. And
all of that following are updates from Jim Scanlon. These folks have been asked
to do the impossible. Tell us everything, but do it quickly. And then you see
that we are particularly then going to up this up for discussion with all of
them. After their presentations, just right ahead. If you just flat out do not
understand what they just said, let’s clarify it as we. Then after we have
heard from all of them, we should be in a pretty good position to have a
MR. SCANLON, J: Thank you, Larry. In the interest of a shorter presentation
and time for discussion, I will try to stick to the 10,000-foot level as well.
Here we are in the first quarter of fiscal year 2014. We are on a continuing
resolution, but we assume everything will work. All of the agencies will have
funding for the full year.
Let me say a little bit about HHS policy and programmatic initiatives.
Obviously, the major initiative is health care reform and the major task is
enrollment and implementation and you have all read the paper and you know how
that is going. It clearly has to improve and hopefully it will improve.
In addition, HHS has a lot of other things before health reform and after
health reform. Much of the 20,000-foot framework for all of the other things is
contained in our HHS strategic plan. We are in the process of revising that
plan. But in front of you is the current draft version of what are the goals
and what are the objectives. You will see it is somewhat different than — I
would say it has just evolved from the earlier version. We are in the process
of consultation now with everyone. Anyone can comment on the objectives, the
goals and so on. Strength in health care, which includes health reform and
other developments as one of the goals. Advanced scientific knowledge and
innovation is the second. Advancing the health, safety, and well-being of the
American people is the third. And the fourth is kind of a catch all, efficient,
transparency, accountability and effectiveness, which includes evaluation and
data and data initiatives and data liberation and so on. Again, that is just as
a backdrop in terms of at that level of the strategic plan.
Under the umbrella of the strategic plan, there are a number of specific
topic area plans in various areas. I mentioned these to you before, but each of
these plans contains an assessment of what the issue is. Tobacco control, for
example. And then there are usually action steps that are recommended that are
aimed at resolving some of the issues or the gaps and so on. Tobacco control,
HIV, hospital-associated infections, reducing those and we are actually making
some progress there. Addressing health disparities and health and health care.
And you are familiar with the National Quality Strategy and the National
Prevention Strategy. There are also initiatives. I am not going to go into
these in global health, early childhood, and Alzheimer’s and disability and
almost any disease you can name. Under the umbrella of HHS, there are usually
probably two dozen initiatives.
We actually have under our office in planning we try to coordinate all of
the strategic plans and we have a system for keeping track of what people
promised they would do and what the goals were and measuring objectives.
The other thing is whenever we create an initiative, we try to have as part
of the group some data experts and evaluation experts. Number one, to see if
somebody hasn’t done this already. And number two, to think of how would you
know you were making progress or not making progress. It is this idea of
objectives, goals, measures, and then we periodically measure. We periodically
drag the initiative team in and have them report on where they are. We try to
align all the objectives as well.
Let me turn to the — in terms of overall data strategy. I have talked about
this before. Under the auspices of our data — we have a couple of themes that
we focused on. One of them is data alignment, which the committee is completely
in agreement with. But here we pulled our executive committee of the data
council together and we developed a theme of alignment and we agreed that we
would focus in terms of our survey and data planning and our pilot projects and
evaluation on these areas. Here just as the committee is thinking about this,
we are thinking of how do we take our population and public health data systems
and surveillance, our administrative data systems and what I still view as the
potential electronic health records. How do we bring those together as we move
forward so that there is a convergence and an alignment of that so that each
reinforces the other? When we make progress in each of those areas, it is based
on and related to the other areas as well.
I think we have reached the stage at least in our thinking where we are done
with the framework part of it and we are now trying to engage in proof of
concepts projects and pilot studies. We have several of these. For example, we
have in terms of the potential of EHRs for public health, for example, we have
a number of projects now where we are trying to take the concept and now make
it look to see. What is it that public health would need? Where does public
health fit? We just finished a nice project along that way. Can we actually
start demonstrating that public health reports and data can now be reported out
of some of the electronic health records?
We have a couple of projects here at NCHS that are looking at the potential
of using EHRs for the provider surveys. We are beginning to use that. This is
nothing new. Surveys and research have always depended on technology.
Initially, it was paper. Then it was facts. Then it was sending visits into
abstract forms. And it was sending batch files. And now we are looking at the
point where can we use standardize electronic health information. EHRs are good
where there is an island or many islands of capability and standardized high
quality data. But it is not yet at the point where you could rely on the
national probability samples. But at any rate, that is part of the strategy.
Another area and this is kind of an interesting area. We have always had
difficulty, as you all know, in hard to reach populations. These are folks who
are hard to reach in surveys. They may be minority groups. They may be other
minority groups. They may be geographically located so that it is difficult to
get them in a research study. There we are trying to see again a pilot to see
to what extent can we use electronic health record networks to study some of
these hard to reach populations. We actually have a study under way. We looked
some racial minority groups. We are looking at LGB populations, and I think the
disabled population as well. In other words, we are looking at the EHR networks
that exist now and can you actually pull them together and do some research on
those populations as well.
On the alignment in there, again, the idea is to begin to move forward,
beyond the framework, and to actually begin to make some progress. I do not
think we have to have completely perfect framework or fully implementation
before we can make progress there. We are moving along those with our research.
On population health, which we have always been interested in, here we are
trying to look at number one can we — there is a particular interest here
around on vulnerable populations as well. We had some success with developing
and adopting data collection standards that would — for certain data items, I
will tell you what those are. I think you know what they are. We have now
adopted and we are in the process of adopting them in all of our surveys. This
is race, ethnicity, disability measures, just a very broad measure, and primary
language and English fluency. We now have all of these being adopted in all of
And we are now looking at administrative data, again, in the concept of
integration. Standards are a good way of promoting integration. We have been
looking at what data items could we standardize or at least recommend as a best
practice for our administrative data systems as well. We got a work group
together. We had some initial — we are looking at things like race, ethnicity,
which will probably be the same item, disability status, which is a little
harder to do on administrative data, primary language and so on.
And then we also recommended some best practices in terms of income and
federal poverty level since it is such an important poverty policy variable.
Insurance status. Here we are hoping to have — most of our surveys get
education. We are close to a standard there. Remember when the committee did a
look at potential standards. The one that was the closest to almost being
standardized was educational level. We are very close there. I think we are
almost like one category off. But that would be I think the next one. We are
thinking about what else we might do.
In the mean time, OMB has developed an initiative on administrative data,
but it is an interesting wrinkle. It is making administrative data more
available to the statistical agencies. It is not administrative data for its
own sake. We are working with OMB on a set of guidelines and principles that
all of the programmatic agencies would work with the statistics agencies on
standards and quality and things like that. The first part of that is just
identifying all of the potential resources and programmatic data as well.
The other area where we were asked to try to make some progress in
vulnerable populations was for sexual minority populations, the LBGT
population. We did a fair amount of work and testing and we now have questions
on sexual orientation and the National Health Interview Survey begin in
January. We will probably have some data relatively small prevalence three and
half percent or so. We think we will have numbers for analysis next summer. We
just have to get all the numbers together.
And then one of the more difficult ones was the transgender side of LGBT.
Clearly, when we looked at it, it was not ready for survey of the populations
just yet. But we did a fair amount of research. We worked with — actually,
Bruce was very helpful with the Massachusetts BRFSS, did a literature review,
have a couple of listening sessions.
We now have a module, two questions basically on sexual orientation, gender
identity that we proposed for the CDC’s Behavioral Risk Factor Surveillance
Survey. We now have — I was telling Bruce. That is an option. The state does
not have to use that. It was not voted as the core. There are just some states
you can imagine that do not want to go there.
We sweetened the pot a little. This is a module. We are giving states some
money to get this started. We now have about 14 states that are using the
module in January as it is. We have another 12 states that are the small tweak.
That will be fine. We will standardize that a little bit later. We have the
categories. And then there are 13 states who said we are not doing that, which
is fine. We will actually have probably 26 states that are actually collecting
this information. Massachusetts led the way. They actually not only collected
the data, but peer reviewed publications as well. You like to see something
come out of the production end as well.
And then I am going to stop in a minute. There is one thing I want to talk
about later if we can. As I said, we started pilot projects on other studies. I
do not want to go through all of them. We have begun a study on the so-called
mosaic effect, which I think many of you have heard of. We are just trying to
get a better sense of what exactly the risk is in a sophisticated way. If there
is a risk, how can the risk be managed or how can we prevent this? It is the
issue that comes up — you protect the data and the data files that you release
and you do a good job of protecting against re-identification, and the next
person does theirs as well, and someone else does theirs as well.
And then you have the voter registration information and the hospital
discharge information and other data sources that are not even federal or
research, but they are all out there and there is the belief yet to be assessed
I think. What is the risk that all of those pieces can be put together? That is
the idea of the mosaic. Every one of its own pieces is not going to reveal
much, but when you put it together, does a pattern emerge where you are
inadvertently re-identifying, you are creating?
We were asked by HHS and the OMB folks as well. Can we look into this more
in depth? The idea of you cannot do that because of the mosaic effect. We
cannot stop, as you know. We are under and so were you under tremendous
pressure to liberate and make the data available. It is kind of useless when we
spent all the taxpayer’s money and now it is not available. It is really a
matter of is there a way to deal with this more systematically.
We are at a contract just at the end of last fiscal year. If there is time
later, Larry, I would like to get some ideas from the committee members who are
experts in this area, is there literature already, and are there folks who have
done this sort of thing. I won’t go through all these other studies.
I will say that — two things I will mention. Now that ACA underway, we have
been asked to look at what is the impact of ACA public health programs. Some of
them are clinical services programs and public health generally. I think public
health is still — there clearly are provisions in ACA that strengthen public
health, but there is an instance of where does public health fit in exactly.
Local public health fit in, state and public health. They can play in
enrollment, in assessment, in other things. It looks from the talks we have
with the public health committee, it looks like that is still a formative and
actually of some concern about how does this all fit in. We are doing a couple
of studies and we have convened some public health stakeholders to see how we
might perceive along those lines and any ideas you have there we would like to
hear as well. I think data is the assessment function and the data function is
always a strong part of the public health contribution that nobody else really
does. Why don’t I stop there?
DR. GREEN: Bruce, do you have a clarifying question?
DR. COHEN: Leslie, you were first. Do you want to go first?
DR. FRANCIS: Just in light of what you said about mosaic and also in light
of what we heard yesterday at the standards and public health hearing about the
importance of actually HHS taking the lead in developing appropriate privacy
and confidentiality practices so that data can be shared. I would really love
to suggest a little change in goal four objective A. That makes it sound like
stewardship is all about the money and not spending it in problematic ways. It
seems to me it makes a great deal of sense to add in there privacy,
confidentiality, and security protections or something that indicates that this
is about — this isn’t just about fraud and abuse.
PARTICIPANT: It is a combination of A and B —
DR. GREEN: We have a request from people on the phone. Make sure you speak
directly into your microphone. They are having a hard time hearing otherwise.
DR. COHEN: A couple of comments. Thanks as always. The work of the data
council seems really very consistent with where we are going. I really would
like us to spend some time with the data council so we cannot repeat each
other’s work and really coordinate and integrate our work. It would be great if
we could set up some time and some meetings with the data council particularly
the population health subcommittee because we are beginning to investigate
getting into this space. I know our presentation was cancelled. We would like
to reschedule an opportunity to present to the data council.
One other quick comment. The public health impact of ACA. Actually, we have
done some work in Massachusetts. I do not know whether you are working with
anybody. I was involved in developing a research agenda to look at the impact
of payment reform in Massachusetts on public health.
DR. SCANLON, J: We had a witness scheduled to brief the data council in
October. We had the shutdown there. We will make arrangements either in
December or January to get back there as well.
DR. MAYS: As usual, thanks for a great report. It is very exciting to hear
all the things that you are really pushing along.
I want to comment on two things. One is the mosaic effect. One of the things
that when we did — I cannot even remember now. Marjorie probably does. What
year we did the report on eliminating health disparities by strengthening data
collection on race, ethnicity, and primary language. When we held our hearings,
the big issue about privacy really had to do with the differing definitions. It
is like HHS.
If you could find a way to offer leadership to states, that would help
enormously because what would happen is the way in which the data may come from
your because you are paying for it, but then the state is responsible for it.
When you are trying to do something, it is like everybody had a different
definition. If there is a way to do a best practice kind of thing or guidance,
I think it would make a big difference for states to have that.
The second thing I wanted to comment about is just a please remember in
terms of the EHRs and that is Bob Kaplan’s group at NIH has really been pushing
to think about what kinds of things in the electronic health record should be
in terms of behavioral and social issues. Mental health type stuff. Bill
probably can say something about this in terms of the IOM committee what they
are looking at. I just want to make sure the whole notion of population health
also includes the behavioral health components in terms of the EHRs.
DR. SCANLON, J: We have just published the final parity rule for mental
health treatment and behavioral health. That should help as well. We are
focusing largely on the demographic data side as a start anyway and standards.
There are probably measures for health and I think Bob’s group was looking at
self-reported measures as well.
The other thing was for the meaningful use stage two or three I guess, there
are — remember, we are talking about alignment among administrative data,
population data and research and electronic health records. At least it was
heading in this direction. Paul, you will remember better than I will. The same
standards that we adopted in terms of race, ethnicity. Disability, I am not
sure because in a clinical record, you need more than the one question we are
using. And language I think. They are heading in that direction as a
recommended standard for the EHR. Again, that is an alignment issue and
standards are one of the best ways to do it. But we will have to look back to
see where the — but that was the way of implementing some of these same
standards for EHRs.
DR. GREEN: Okay. Denise, you are looking ready to go down there. Welcome
back. It is nice to see you.
MS. BUENNING: Thank you so much. Good morning everybody. Just a quick update
from CMS and a number of initiatives that do not involve the marketplace. First
off, the meaningful use EHR incentive payment program. Just some statistics. We
are continuing to monitor progress on this project. I can tell you that over
325,000 Medicare and Medicaid eligible providers have received an EHR incentive
payment through the program. About 83 percent of all eligible hospitals have
received an EHR incentive payment. That means that more than eight out of ten
eligible hospitals have made a financial commitment to an EHR either purchasing
a new EHR system or making enhancements to an existing one in order to
participate in the program. Approximately 56 percent or more than one out of
every two Medicare eligible providers are meaningful users. And approximately
73 percent or nearly three out of every four Medicaid eligible providers have
reserved an EHR incentive payment. The numbers continue to grow the commitment
to EHR use. Utilization is growing. Again, we continue to monitor this as we
approach stage two of the program.
Moving on to administrative simplification, the certification of compliance
regulation now that the industry has been waiting with bated breath for this
one. I guess that the original deadline was supposed to have been the end of
this year, however, to try to align it with the HPID, we have pushed this off a
little bit. I think everybody can expect to see a proposed rule come out by the
end of the year. We had hoped to get it out a little earlier, but we had a
little bit of a vacation back in October. We are delayed, but we are working
very closely with OMB and OSORA to try and get this moved. Of course, there
will be a public comment period associated with that proposed rule and then a
final rule coming out next year. Keep your eyes peeled for that.
HPID, the Health Plan Identifier. The enumeration system that CMS has put in
place, which is called HPOES, no pun intended, is open. Some health plans have
already enumerated in the system. The deadline for large health plans to
enumerate is less than a year away. It is November 5 of next year. We have
gotten some feedback that some of the health plans are struggling trying to
figure out how they are going to enumerate, what their policies are going to
be. We are going to be conducting outreach and education over the next few
months to assist the plans and trying to figure out what their enumeration is
going to look like.
EFT, standards on the EFT and ERA Operating Rule Set. Again, the compliance
date for this is January 1, 2014. We are getting some feedback from industry
that providers especially are probably not ready on this. We have instituted a
communication strategy to outreach to providers about the benefits of getting
their payments electronically through electronic funds transfer and electronic
remittance advices. We will be trying to push that information out to them in
the coming weeks.
As you know, under the Affordable Care Act, there is a requirement that a
review committee be set up in order to take a look at the standards of
operating rules. Their feasibility, their usability, et cetera and we have
begun some internal discussions at CMS regarding the structure and scope of
what this committee should look like. We hope to report back in the next
session as to what progress we have made on that.
ICD-10. Always my favorite. We are obviously still committed — always
committed to transition to ICD-10 together with our industry stakeholders.
Again, the date still is firm. October 1, 2014. We are continuing to work very
closely with our industry stakeholders. We are holding provider/payer
clearinghouse and vendor calls to assess readiness. We are offering free
technical assistance and training especially to small, rural home health and
other safety net providers to help them transition to ICD-10. We are getting
feedback that many large providers, clearinghouses, payers are on track with
implementation. Again, our smaller providers are needing assistance.
We have expanded our free ICD-10 technical assistance and training program
to help small providers. We have gotten very positive feedback about the free
training from the groups. Again, we invite all of you to spread the word that
training for small providers is available.
There is still obviously a lot of interest in ICD-10. We held a national
provider call just recently. We had more than 27,000 providers on the line to
educate them about ICD-10, discuss best practices, and answer their key
implementation questions. The website is featuring new tip sheets, fact sheets,
checklists. We have gotten 98,000 website visits in September alone. The
website has grown. We have over 130,000 Optum participants that receive ICD-10
updates on a weekly basis.
We are helping again, the small providers transition. We have released two
new ICD-10 training videos that help providers with implementation. I believe
that physicians can earn CME credits on this if they view it. We are continuing
developing new implementation educational resources. We are launching a new
private/public partnership called the ICD-10 Industry Support Center. We are
working on WEDI, the Workgroup for Electronic Data Interchange and other
industry partners to offer pre- and post-implementation support. It will offer
free technical assistance and work collaboratively with industry and our
experts to help answer implementation questions.
I think that for those of us who have gone through the version 5010
implementation, it will be very similar in that we will take in questions and
get answers out to the most commonly asked questions and push information out
that way. Again, we have worked with WEDI on this before and it has been very
successful. I think we are following suit on ICD-10.
On a technical standpoint, CMS I understand from our friend Pat Brooks, we
have posted files and links to the ICD-10 website, reimbursement mappings, and
ICD-10 MS-DRG software. It is going to allow the public to continue to evaluate
the conversion of the MS-DRGs from the nine codes to the ten codes. These are
on for not only the diagnosis codes, but also the procedure codes. If you go to
CMS.HHS.gov/Medicare/coding, they are listed on the website for those of you
who are interested.
That is pretty much my CMS update for this session. I welcome your
DR. GREEN: Ob.
MR. SOONTHORNSIMA: Thank you, Denise. Just real quick. Last June, we had a
hearing and we talked to the status of 5010 and lesson learned. We learned also
that the industry or smaller providers are still using crosswalk process for
their 4010 transactions, 5010. I do not think we had any follow up just to see
what the implications would be for those providers who are still using the
crosswalk and how ready they are going to be before the ICD-10 change over.
MS. BUENNING: Yes, we did get some feedback that there still is a population
of providers out there that are still using 4010 and depending on
clearinghouses to make the translation for them. As we are trying to get the
messaging out on this, just raise awareness among the provider community and
the instances of — first of all, ICD-10, 4010 and ICD-10 are not compatible.
You must move to 5010 in order to use ICD-10. We are using that as a backdoor
message in order to get people to be 5010 compliant.
I know that the clearinghouses also are making the point with their clients
who are going this route that that is not going to be acceptable moving forward
and that clearinghouses do not have the ability to make a change especially
with changing codes. On 4010 to 5010, they could do that, but you cannot change
a code for a clearinghouse from a nine to a ten code. They are working very
strongly to get the message out to their clients that they are going to have to
make the transition.
DR. COHEN: Denise, could you comment on your sense of the readiness of the
Medicaid state agencies for ICD-10?
MS. BUENNING: We get reports every other week from CMCS, which is the
Medicaid side of our house. As I think to be expected, we have some states out
there who have a lot of their resources going quite frankly towards the
marketplace implementation and perhaps are either getting a little bit behind
or are indicating that they may have some problems getting to ten.
I know that we are literally working with these states one on one to get
them to find either a contingency plan — no matter what they have to be able
to take ten and they have to make sure that payments are made. I think that is
the bottom line not only for the states, but also for CMS and for all payers is
make sure that payments still flow. I think they are working to look at risk
I can tell you that the number of states that we have gotten feedback from
who we think they may be in some kind of peril is less than we would have
DR. CHANDERRAJ: Denise, I had a question about enrollment for meaningful use
or the incentives. You said 56 percent of the physician practices are enrolled
in that. It is growing you said. Now with the RACs coming in and auditing, they
are saying some other physicians are not eligible. Is there a number and what
percentage of this 56 percent constituted withdrawal from the program?
MS. BUENNING: I think the number that was given to me was 56 percent or more
than one out of every two Medicare eligible providers are meaningful users. In
other words, it appears that they are meeting the criteria. Now, obviously, if
we go into a post-audit world, we may determine that maybe they have not met
the criteria and that is obviously the purpose of the audit to find out exactly
where we stand. I do not have any numbers yet because the initial audits that
we have done are relatively small in number. We are just trying to get a flavor
of what the issues are. From what we are seeing, most providers who have gone
through an audit, the issue seems to be that they did not perform or did not
know they needed to perform a risk assessment and that piece of their
documentation seems to be either missing or inadequately done. Obviously, we
are going to have to take a look at the results in general and redouble our
efforts to make sure that they understand they must meet all the criteria and
have documentation to back it up.
DR. FRANCIS: A quick question about blue button. Do you have any updates on
MS. BUENNING: No, I do not. I am sorry. That has been transferred over to
another group within CMS who is now taking the lead on that. But I will be
happy to find out where we are and get back to you on that.
MS. PHELPS: Ruth-Ann Phelps, VA. Just a question about EFTs. Is there any
chance that the date is going to slip?
MS. BUENNING: Not that I know of.
MS. PHELPS: Thank you. We have a large outreach program to payers. There are
a lot that are telling us they will be ready on the target date. But we have
the impression that some of them are holding off in the hopes that CMS will
give them a break and change the date. Just checking.
MS. BUENNING: I honestly have no indication whatsoever that the date is
going to change. Again, for this particular operating rule, it really is of
such great benefit. They get their payments securely. They get their payments
quickly. They are able to reconcile, which is very important of what they have
claimed and what they are getting back. I would be very reluctant to make any
kind of a move on that date. The date is what it is.
DR. GREEN: Before we go to Laura, one more qualifying question. Could you
tell us what the operating definition is of enumeration in that second or third
thing you were mentioned?
MS. BUENNING: For the health plan identifier.
DR. GREEN: For enumeration. What does the word enumeration mean?
MS. BUENNING: Basically, it means that you “register” your plan
within the system. And the way you would determine how that you are going to
register your plan is and there again definitions within the regulation as to
whether you are a controlling health plan or you are a secondary health plan.
Some plans may choose to go under one umbrella and just use one identifier
under a controlling health plan or they may decide to identify themselves
separately under the subset health plans. And the reason for that is because
the way the law is written it is dependent on systems. It basically says that
if you were to get into a penalty phase, penalties would be assessed according
to the number of covered lives within a given data system. They are trying to
determine are we covered by the parent corporation data or do we have separate
data systems that we need to put out separately. Unfortunately, it is not as
clean a requirement as we would like, but that is what the statute says. We
have tried to work within those parameters.
DR. GREEN: Denise, are you going to be able to stay for the other
MS. BUENNING: Unfortunately, I cannot. I have to go back to Baltimore. I
would be happy to answer any follow-up questions.
DR. GREEN: Maybe we should see if there are any further questions for
DR. CHANDERRAJ: To follow up on Larry’s question. If a plan says, for
instance, Blue Cross has about 60 plans out there, do they register in those
plans or one number is enough for everything?
MS. BUENNING: They can do it either way. Again, I think it depends on are
all those plans covered by the same data system, the same network, or are they
somehow separated out by region or are they so unique that each one needs to be
separated out separately. We would hope that they would go with the former
rather than the latter because the whole idea of a health plan identifier is to
reduce the number of legacy identifiers out there so that providers are not
having to deal with in some cases hundreds of different identifiers for plans.
It also depends on the routing. It really is a business decision from the
plans’ perspective as to how they wish to enumerate. We have given them a lot
of leeway as to how they want to do this.
DR. CHANDERRAJ: The reason is I think because we have so many plans and it
is always difficult for a practice to see the net collection rate from what
these plans are playing. Each plan has its own different copays in terms of
reimbursement. It is very difficult for practices to get a number on that.
MS. BUENNING: Yes, it is. This was a much more complex regulation for us to
write. We got a lot of input. We thought we had a plan going forward. We got
additional feedback. There were some who asked us to enumerate at a very high
level. Others that asked us to enumerate down to the product level, which we
thought might have been too burdensome. We tried to find some kind of an even
DR. SCANLON, W: I actually think it is an unfortunate situation that we are
allowing the plan ID to be a very aggregate identifier because I think it is
easier to deal with a more micro-identifier plan ID that conveys information as
oppose to an aggregated ID, which then says now I need to go to another source
to find out information about what is actually covered, what the rates are
going to be, et cetera. I think we have really missed an opportunity here to
start to have an information flow that would have been very useful.
DR. GREEN: Denise, I would like to ask you another question that is just
slightly tangential. You may tell me it is completely tangential. But when you
were talking about these small providers, many of these are primary care
clinicians, offices. I want to go back to ICD-10 and hook those up and ask a
question about the international classification of primary care that is ICD-10
compatible, mapped ICD-10 back and forth. It works. It is used all over the
world. Can primary care providers use ICPC?
MS. BUENNING: In terms of filing a claim with them?
DR. GREEN: Yes, in terms of filing a claim with it.
MS. BUENNING: I don’t believe so because it has to follow a certain format.
DR. GREEN: It is in the same ICD-10 format. It is just that it does not go
out to so many digits.
MS. BUENNING: I would have to check on that, but my immediate gut reaction
to it is probably not just because I do not know — if a system is loaded with
ICD-10, I do not know that it would necessarily recognize a different code even
if it had the same format. In other words, if an ICD-10 code is for sinusitis
and you have another primary care code for sinusitis, but it is the same —
DR. GREEN: They actually are the same.
MS. BUENNING: Are they the same? Okay. If they are exactly the same, I do
not see why you couldn’t.
DR. GREEN: They stop sooner.
MS. BUENNING: I think that might be problematic if they stop sooner.
DR. GREEN: There is an important conceptual problem here. Half of the
problems those guys see never come to a diagnosis.
MS. BUENNING: However, as we have talked about before, the expectation is
that they would not need to know every single code. Just as a cardiologist
would only be concerned with cardiology codes, primary care would most likely
be concerned with the majority of codes that they see on a day-to-day basis.
DR. GREEN: It seems to be an unsolved problem. It seems to be a problem that
you are working at. I just call to your attention that every problem by
definition and to quote Barbara Starfield by definition exists in these primary
care offices. They do not exclude anything. The cardiologist can usually get by
with about 15 codes or maybe 30 or maybe 45. ENT guys can usually get by with
about 17. These guys cannot. They need to help with simplification for
adoption. We just call out the possibility that there might be help and
assistance that could be made available by taking advantage of some of
Marjorie’s work over decades ago and others that proof of concept is in from
other data systems around the world effectively use it. You can accuse me of
being completely tangential and it could make things worse rather than better.
MS. BUENNING: I am certainly happy to explore that possibility if that is a
way for a primary care provider to accurately code and use that coding and get
paid through the claims process.
DR. GREEN: Reliably reported. Accuracy is probably the correct word to use
there actually. Just don’t expect precision when it is so ambiguous. But
accuracy is achievable with ICPC and demonstrated in multiple countries.
MS. BUENNING: We will pose the question.
DR. CARR: I would just add that I think your comment and also Bill Scanlon’s
reflect back to what Jim was saying that when we go back to measure, when we
did something, what was it that we were trying to achieve and did we get it
right? I agree with Bill’s point very much. It came a lot in the hearings and
you and I talked about primary care issue as well as we think about population
health and some of the big goals.
But it actually would be interesting to know what will be the measures by
which we assess success. What constitutes success? I think it is something we
will have to circle back.
MS. BUENNING: I think that will also be part of the scope of the ACA review
committee to look at what has been adopted, does it work, does it have utility,
does it do what it was intended to do successfully. I think that will also be
part of those discussions as well.
DR. GREEN: Thank you, Denise, very much. Laura, thank you for your patience.
MS. ROSAS: Thank you so much. It is a pleasure to be here this morning. I am
going to provide an update on our offices’ projects and some of our policy
discussions. I am going to touch upon the accounting for disclosures. I know it
is on the agenda for later today, but I will just talk a little bit about that
and I will provide an update on our projects.
On the accounting for disclosures, there have been a number of discussions.
There was a discussion of the tiger team on the 21st. There was another one on
the 5th. The big issues are the importance of transparency and the patient’s
rights to have information that they can understand that is presented in a way
that is actionable, which is understandable given how much information can come
out of EHRs and other systems.
Transparency. One of the issues is that the information presented for those
who are also disabled, who have limited English proficiency, we had a number of
patient representatives speak who testified about patients wanting this
transparency. They also emphasized the importance that patients have about —
knowing what information is in an EHR about them. Those were some of the issues
that came up in terms of the transparency.
It is not clear if patients will be able to understand the information that
is currently in the NPRM — too much of a deluge of information. We know this
is an issue with auto reports. It is too voluminous.
Patients right now do not ask for reports on this. We do not know whether it
is because they do not understand that they have this right or whether they do
not see any value in this. We know that when patients feel that their rights
have been violated and someone has done something, it is episodic in nature
that they will ask how did this happen and then there is an investigation that
usually does go to the audit trail issue. It is still not clear what patients
want basically out of accounting for disclosures.
Everyone seemed to agree that patients have a right to a full investigation.
If there has been inappropriate access, there was some feeling that this might
be more helpful to patients if it was episodic. There were some concerns around
expense of building these systems. There were also some concerns raised about
providing patients with the individual’s names who had access to their
information. There were some concerns raised about stalking, for example, or at
least the security of the actual employees at a hospital. If their names were
on reports, there were some issues raised about that.
I am just basically going to touch on the — disclosures. I know it is on
the agenda for later today and I am happy to answer questions.
Moving onto our projects, September and October were busy months for our
office. We would have had a third project roll out in September. That was
delayed because of the furlough that came out in October and I will discuss
that in a moment.
One of our big projects was meaningful consent. This came out of HIT PC
recommendations that were a couple of years ago based on recommendations for
what a meaningful consent or meaningful for choice for patients would be when
working with an IHE and providing the consent to have a provider either provide
access to an IHE of their own information or access the HIE for the patient’s
We ran a pilot in upstate New York where there are about six practices I
believe that were small to medium-sized practices where patients were provided
tablets that explained what an IHE was, how their information would be shared,
what information was shared and then after providing an education on video on
this tablet, they could make a consent decision that was then transmitted to
the HIE. And the goal was to determine was this something that was workable.
Could you put this into a physician workflow and have that be something that
worked for everybody. Did patients find value in that?
There were a number of tools that came out of this. Some of the tools were
the actual videos, which are customizable. Here you have images of what that
tablet looked like. You had this actor sort of going over this and explaining
it. There were a number of different videos. Patients could choose different
videos. Do I want to learn more about an HIE? Do I want to learn more about the
consent? What is an HIE? What is this HIE? This now is on our website and it is
actually customizable. Other HIEs and other provider practices can actually go
in there and putting in a log in, they can download these tools and make it
customized for their own situation. This has been a pretty exciting project.
As well as those customizable tools, we also have videos for patients and
for providers. They are really for providers, but you can see where it could be
applicable to patients as well explaining what the e-consent project was and
what some of the lessons learned were out of that project. And in the videos on
the second half of that slide, explain how to use those customizable tools and
how to actually build their own videos for use in their practice. That is our
toolkit. This is all on our website, freely available, and free to anyone who
wants to use our tools.
DR. TANG: Could you show that URL again?
MS. ROSAS: I will only touch upon this because I know Rachel is going to be
speaking about this a little more. We also released along with OCR in a
coordinated effort new notice of privacy practices that is also on OCR’s
website. We have a link from our website. The goal was to make these more
understandable of patients. This would also be bringing the HITECH Omnibus
And then finally, we launched our second video game on contingency planning.
That is also on our website. This is the URL. This is a follow up from the game
that we released last year, which were more broad security issues in a typical
small practice. This game really focused on contingency planning, which is part
of the HIPAA security rule. It is also part of the risk assessment. We know
that providers are really struggling understanding the risk assessment and in
particular, really do not understand contingency planning, which includes
disaster planning, backup and recovery. Given the severity of the weather in
the US, obviously it is a very important issue that even small practices need
to be concerned about.
What is fun about this game is that in the last game if — I will give you a
typical question and again you can find this free on our website. We are not
located in a flood plain or where there are a lot of hurricanes. We do not have
to worry about any other kinds of risks, do we? This is the physician asking
the office manager if this is a problem. Here are the choices. No, you only
have to plan a response to natural disasters like tornadoes, floods, and wild
fires. Not if you have insurance. No, why waste your time planning for
something that is not likely to happen? Yes, if you do not plan for threats
like fire, vandalism, or power outages, your information may be vulnerable to
loss or damage.
We have really been trying to get the message out that it is not just about
natural disasters. That the lights go out. That is a problem that you need to
plan for. The system goes down. That is a problem that you need to plan for.
And obviously, those events are a lot more frequent and more common than
natural disasters. It makes the urgency of this activity a lot more relevant I
What is fun about this game is that when the answer is wrong, a large cloud
comes by and there is lightening and there is a flood. You lose part of your
practice. We had really good feedback from the first game. We are hoping this
will really shed some light in an area that is obviously something physicians
really need to know more about and other health care providers. That concludes
my updates and I am happy to take questions.
DR. GREEN: Thank you very much. Bruce and then Sallie.
DR. COHEN: Thanks for that report. You brought up an issue that I guess it
is more of a comment than a question. I would like the committee to put on our
agenda the issue around re-disclosure of HIE data. I do not know that anybody
has been working — I would like to know what is going on there and whether
this is a space that we could be in terms of establishing policy or thinking
about options and guidelines.
MS. MILAM: I have a question about your eConsent Toolkit. Does it also apply
in an opt-out environment? Are there instructions about how to use that in
MS. ROSAS: It is op-in/opt-out neutral. It can work in either.
DR. FRANCIS: This is just a quick go back to the tiger team. One of the
questions I think we will be taking up this afternoon is the whole set of
protections and what the alternatives are. We did not really hear very much in
the virtual hearing to dumps of access information. I think everybody was
pretty well convinced that just getting a list of everybody that has seen data
does not make a difference or is not understandable to patients isn’t what
people want. But whether the alternative to that is simply investigations when
patients ask is going way far over on the other side because — this is
something from this committee actually.
A couple of years ago we heard testimony about access to data through
exchanges actually that raised the stalking question. The stalking worry was
that people who are interested in knowing where someone is could genuinely
threaten them without their knowledge if they can get access to their
information. It was not about employees. It was about patients if people could
get inappropriate access. And people might not know that has happened until it
is too late. Investigation and response to a complaint at least we were told
from I think it was the National Center on — it was a national group about
MS. KLOSS: I have a process question on accounting for disclosures in what
the path forward is now for the tiger team. I think that would help our
committee before we dive into some of the issues. I listened to the audio and
it seemed as though the plan was to offer recommendations to the policy
committee as early as December. Is that your understanding?
MS. ROSAS: I believe though there were more discussions planned. I do not
think they are at a place right now where they are about to put forth
recommendations. I defer to Leslie. I believe that there is some planning for
more discussions to delve into this a little more deeply.
DR. FRANCIS: There is another tiger team call on the 18th. I just got a copy
of the slides. Unless something has changed, the idea was to finalize then.
What Devon anyway told me was that if we wanted to say anything, we were going
to need to say it at this meeting because then that was going to go from the
tiger team to the policy committee. Paul, do you know anything about that?
DR. TANG: I was trying to look it up. I think it is on schedule for
DR. FRANCIS: That is right. And the 18th is the last call before December.
One of the things we could say is we think that it is premature to move that
MS. KLOSS: I do not know what the answer is, but I guess I wanted to just
clarify that right now we are feeling there is a real sense of urgency to come
together with some consensus or input from this committee either at the full
committee level or subcommittee. We will take that issue up. I have not
understood in listening what the heart — what is driving that tight schedule
given where the level of discussion seems to be at now.
DR. GREEN: Any reactions or suggestions?
MS. ROSAS: I think if you have a lot of concerns about the timeline, I think
finding out what exactly is driving it. I think that they want to move this
forward because they are trying to release this and have it be something that
is workable. But if the feeling is that it is not, I think I would just bring
DR. TANG: What is your desired timeline?
MS. ROSAS: I can get back to you on the exact timeline. My understanding was
that there would be more discussions. There has not been a coalescence around
particular recommendations at this time. There are a lot of issues from a lot
of different stakeholders. My understanding was that they were going to
continue to have discussions. I know there is a discussion on the 18th. I am
not sure what in December is the next meeting.
DR. TANG: What is your timeline for getting advice or feedback from the
MS. ROSAS: I am not sure actually.
DR. GREEN: Maybe you can get back to us.
MS. ROSAS: I will.
DR. GREEN: Raj, I think you get the last question here before we move on.
DR. CHANDERRAJ: Thank you, Laura. I just had a thing about the consent. So
many vendors put out consents and practices are using tablets for consents. Is
this ONC thing going to override those consents out to the pilot project?
MS. ROSAS: No. I think what we have done is we put together a set of tools
that are available and they are free that people can use to be able to
customize for their own organization and their own situation.
I do not see that they need to replace it. It is on a mandate. It comes out
of a project that we did. It may not fit for everyone’s situation. We encourage
people to take a look at it and see if it would fit their organization and to
avail themselves of it.
DR. GREEN: Thank you very much. Rachel, nice to see you back. Your slides
look like they just went up.
MS. SEEGER: Nice to see you too. Thank you for having us here. As Laura
mentioned, OCR and ONC have worked collaboratively together on model notices of
privacy practices that are posted to OCR’s website. These are two sets of model
notices, one for the provider community and the other for health plans. I
believe that we presented on it the last time we were here. I did not have a
lot of time. But I did want to mention that ONC and OCR are working now on
translating these into Spanish. By the time we present to you next, they should
be posted and available publicly.
Briefly, I wanted to give you all an update on CLIA. As you may recall, this
is a joint rule making between OCR and ONC that will result a material change
for CLIA and CLIA exempt laboratories in that individuals will now have a new
right to receive a copy of their information directly from these laboratories.
As a result, the laboratories will need to change and update their policies and
procedures and likewise will need to revise their notices of privacy practices
and distribute these.
Given that we are in a bit of a holding period here on CLIA rules, they are
over at OMB for clearance. We have decided to exercise our enforcement
authority and delay the requirement that these covered entities have in place
their updated compliant notice of privacy practices. When we are ready to move
ahead on this, OCR will give at least a 30-day notice to the industry, but
these laboratories will need to have their updated notice of privacy practices
Again, the final rule making for CLIA is over at OMB as is our notice of
proposed rulemaking on NICS. As you recall, we issued back in April an advanced
notice of public rule making. I am trying to collect some information on
whether HIPAA prevents some states from reporting information into the National
Instant Criminal Background Check System, NICS, on whether there are
prohibitors for individuals to purchase a handgun or a firearm rather. We
received over 2000 comments on this. The NPRM is over at OMB and we will have
another 60-day comment period. When the NPRM is published and we will need to
go through all of those comments before a final rule is issued. But working
very closely in collaboration with the Department of Justice on this.
That brings us to HIPAA and mental health disclosures. Our director, Leon
Rodriguez, testified before congressional committee in the House, Energy and
Commerce April 16 on HIPAA and mental health. The committee has come back and
asked us for written guidance. Again, we have, as you may recall, a letter that
we issued to health care providers on duty to warn and to clarify disclosures
to friends and family, but also to clarify that when a provider believes in
good faith that a warning is necessary to prevent or lessen serious or imminent
threat to health or safety patients and others that HIPAA permits a provider to
alert those closest to the patient and others when he or she believes that
again there is an imminent or serious threat to the safety of the health and
well being of that patient and/or others.
I just thought that I would throw in a slide on a new initiative that we
worked on with the HHS Office of the Assistant Secretary for Preparedness and
Response and the FBI. It has flown a little bit under the radar. But I think it
is important. It is a new blue card for law enforcement. This provides a basic
description of the HIPAA Privacy Rule and outlines several disclosure
permissions that allow disclosure for purposes of law enforcement. It is about
this big and fits into the pocket of a law enforcement official. This is an
area that often times there is a lot of confusion around. The little card
should go a long way in providing clarification.
It is just indicative of the work that we have been doing to try to clear up
preconceived or conceived barriers to the sharing of information. I think that
there is a lot more work that we can do. But we have been trying to target some
specific categories of industry such as elder law where there are many
guardians out there and personal representatives of patients who are receiving
a lot of barriers to information sharing access, basic access of information
especially within small providers. We have been trying to clarify, number one,
that there is generally an individual within every covered entity that is
designated as a chief privacy officer.
Getting to that person is a lot more effective than trying to work with the
person who is doing registration at the front desk. Trying to push past, get
yourself to the right person. But then also trying to educate the regulated
industry, especially the small health care providers. Both Denise and Laura
brought up I think a really important point. CMS and their audits have seen —
it is the general lack of having a HIPAA security risk analysis in place. I
believe that ONC has also been trying to develop tools to deal with this.
We developed a training program, a module, through our Medscape platform for
free CME and CE credit on this topic. We are working now jointly with CMS on a
follow up on that to really delve into the steps that covered entities need to
take in order to look at their risk in an ongoing way and how to manage that
risk really encouraging the provider to work with the vendor, to work with
people in their office who are responsible for information technology, putting
a folder together. All of the steps to document what you did in order to look
at your risk and how to manage that process in an ongoing fashion. Really
getting down to the basics of date stamping documents.
When we just recently did our pilot audit, it was the number one consistent
thing that we saw across the board, a lack of having a risk analysis in place
of all different sized covered entities. We had a couple of major enforcement
actions on this most notably with the State of Alaska not having a risk
analysis and risk management process in place. It covers the gamut of all size
and scope of organizations.
HIPAA security rule just I think likely did not get the attention that the
privacy rule did. There are no binders up on the shelf at all. This should have
happened in 2005. Here we are in late 2013. What can we do to stimulate the
industry to move forward on this because it is a requirement in stage two and
meaningful use? That is a question I think for all of you. Certainly, it is
something we would like to hear more from.
These little programs we do on free CME and CE credit. They are great. We
have had a tremendous response, 25,000 providers taking these for credit. But
that is not even the tip of the iceberg of what is out there. How can we work
collaboratively to get the word out on this so that patient information is
protected? But also in the event of even something like lights going out that
that data is — that the integrity of that data that the threats have been
addressed. It is very much on our mind right now.
DR. GREEN: Anything else?
MS. SEEGER: No. Thank you.
DR. GREEN: It looks like they are ready to go here. Paul, you are the last
one up, but I think this is immediate.
DR. TANG: Just on that point of security systems. It actually was in stage
one of meaningful use. My question is it is an all or nothing proposition. When
you audit, do you then actually retract the money?
MS. SEEGER: That is a question for CMS.
DR. TANG: That is true. But you were finding that they essentially did not
comply with stage one meaningful use.
DR. GREEN: Thank you for raising that wonderful issue. I think Ob was up
MR. SOONTHORNSIMA: Thank you, Rachel. This is more of a follow up. Last time
you came and we talked about Omnibus Rule, disclosure, breach disclosure, and
so forth. The question is has there been any more discussion around breach
disclosure and how to handle the situation on the FFM, Federal Facilitated
Marketplace and all the exchanges that are operating right now. By and large,
what these entities are doing are pretty much what coveted entities are
functioning today. That is a follow up.
MS. SEEGER: We did go back and have a discussion staff about whether or not
the exchanges are covered entities under the rule. The guidance that we heard
back from CMS and I wish Denise was still here because she could speak to it is
that the exchanges are covered under the privacy act of 1974 as well as state
law, certain state law, and not covered entities under HIPAA. That also holds
true certainly for healthcare.gov. That is a major area of question that we
have been receiving. Again, this is in CMS’ bailey wick. I think I would defer
to them for an answer on this. But we did go back and have some conversation on
this for follow up to you all.
MR. SOONTHORNSIMA: Just real quickly, are there clear rules or clear rights
of the consumers that has been explained on the website or any of these
entities in terms of what their rights are if there is a breach.
MS. SEEGER: Again, I think that I would need to defer to CMS on this. This
is their program. They have issued the guidance on breach reporting. They are
responsible for the intake of those breaches outside of the scope of OCR.
MS. MILAM: I have a quick follow up to Ob’s question. One of the changes in
the fairly recent regs that were issued added a new category of business
associates, the Health Information Organization. Is it OCR’s position that the
health insurance exchanges are not a type of health information organization as
a new business associate then?
MS. SEEGER: I think that is an excellent question. The health plan in this
case would need to look at the functions that the exchanges are doing if they
are doing a function on their behalf. That covered entity would need to — if
they make a determination that this organization is a business associate, there
would need to be an updated business associate agreement in place. If that
organization is then a business associate, we need to comply with the HIPAA
security rule and certain requirements of the HIPAA privacy rule and to have an
updated business associate agreement in place by September 2014.
MS. KLOSS: My question will take us a little different spot. You shared the
snippet of the date stamping, something rather obvious and simple that you
learned through the audit process. Will those results be shared?
MS. SEEGER: Yes. We are working now on a report from the audit findings. The
audit is wrapped up in December. It has been some time, but it does take a
while to aggregate all this information and then pull it together in a way
where the industry can take something away from it. There will be more to come
on these lessons learned. Really, what we are trying to do is articulate this
in a way that is plain language and action oriented. I think day to day most
small health care providers have so much on their plate, they have not had the
time obviously to get around to this and very much need to do so.
MS. KLOSS: I think this will be very helpful because it is likely that a lot
of very practical types of findings will emerge.
DR. GREEN: Vickie and then we will go to Mike and then we will come back to
Leslie and then to Paul again.
DR. MAYS: I want to comment about the mental health statements that you
made. One of the issues that have come up is that quite often when we are
looking at HIPAA and worrying about this, we are thinking about the statements
from the provider to someone else. In an analysis that was done recently
looking at some of her the violent shootings we have had, you have family,
parents, et cetera who are trying to give information to providers and
providers are saying I cannot because of HIPAA. I cannot listen to you. I
cannot take the information. I am just putting that out there as something to
think about as to how individuals are perceiving the providers of what
information they can take even when there are some serious consequences that
are occurring. I do not know if they do not understand or if there needs to be
an examination of when it is particularly when people are warning that they see
their son or daughter acting in a way in which they think something very
significant is going to happen that the provider then says I cannot take the
information. I cannot talk to you. I cannot take the call. I think this is
coming out now as we are looking at the issue of mental illness and gun
MS. SEEGER: Hopefully, the letter that we issued in January, the duty to
warn letter, is something that a caregiver or a friend, a family member who is
involved in the patient’s care who has some concern is something that is
downloadable that can be taken to the health care provider. But again, I think
the new guidance that will be forthcoming on this will really address friends
and family and permitted disclosures under the rule.
DR. FITZMAURICE: I want to thank you, Rachel, and you, Laura, for your
testimony. It has been fact filled and you have been telling us what you are
doing to help people understand the privacy and the security that is required.
I probably have what I hope is a simple question. If I walk into a doctor’s
office and I get a lab test, can I give the doctor here is a slip of paper with
my address. Would you instruct the lab to send the results directly to me as
well as to you? Can I have the lab test and forget the doctor so I contact the
lab and say would you please send me the lab test results? Will this be true in
all states? Is the intent of the rule that when the rule becomes final if it
should become final that it would permit this?
And thirdly, if I just walk into a lab test and say I would like to know
what my white blood cell count or I want a lab test for this or that, can the
lab test perform it and then give the results to me or does the doctor have to
intervene? There are state laws that say the doctor has to order the lab test.
Does this supersede the state laws in that regard?
MS. SEEGER: For CLIA laboratories, this new rule making will allow the
laboratory to communicate results directly to the patient. It will extend that
right of access directly to the patient.
DR. FITZMAURICE: Suppose the laboratory does not want to do it? Does this
give the patient the right to have the laboratory send it? Does it mandate the
laboratory send it to me if I ask for that?
MS. SEEGER: I can get back to you on that. But I believe that what the rule
making is proposing — again, what we have is a final rule that is over at OMB
for clearance. I cannot get into this —
DR. FITZMAURICE: — in terms of intent rather than saying what does the rule
MS. SEEGER: Yes, but the intent really is to open up — to give the patient
a right of access at the laboratory level, at the CLIA laboratory level.
DR. FITZMAURICE: That is good enough. Thank you, Rachel.
DR. FRANCIS: Two just very quick questions. Where can we get copies of the
mental health letter and the blue card?
MS. SEEGER: Both of those are posted on OCR’s website. I will share the
links with the committee and we will get those out to you.
DR. FRANCIS: A then a little longer question. It goes back to what Linda
asked. One of the things we care a great deal about is we want to make sure
that we are helpful to the needs of HHS and OCR. I heard you almost saying and
I am not quite sure that with this whole problem of providers not understanding
what to do about the security rule. Is there anything we can do to help to try
to figure out what some of the barriers are, what some of the methods might be
to help overcome the barriers? I heard you say something about this is
something that this committee might help with. And also, we are going to be
writing the HIPAA report to congress. We will be talking with OCR on some of
these things. It sounds like this is something that potentially ought to be in
that report too. Your comments on both of those.
MS. SEEGER: I absolutely think that lack of awareness and perhaps negligence
on the part of the industry and conducting the basic risk analysis and the
ongoing risk management is a major issue right now to entities being able to
move forward and comply with meaningful use, entities being able to move
forward on being able to comply with the HIPAA security rule 2005, being able
to comply with meeting the breach notification requirements and whether or not
they considered an encryption in being able to meet safe harbor. I think that
if we went out and audited covered entities, we would see that very few of them
have conducted training for their staff on breach notification. There is
certainly more that we can do than we have been doing.
Anyone who has worked in this space and Denise and I go back for such a long
time. I am trying to roll these rules out to the industry. I think that we are
at a critical point here with the adoption of EHR being able to move forward on
the exchange of information in a meaningful way electronically. It is paramount
to be able to understand what your threats and risks are and to be able to
manage those hazards to your patient’s data.
MS. ROSAS: I want to just really agree. It is really hard to roll this stuff
out and get to the providers who need the information. When we put out a game
or meaningful consent or anything we put out, it goes out on the ONC listserv,
which I think is almost 60,000. It goes out on the CMS listserv now, which is
around 78,000. But that is a drop in the bucket. And to the extent that you may
have relationships with county or state medical societies, I think is a really
great conduit to the small practices. We know that the issue around the risk
assessment is affecting all large organizations and small organizations. But
the smaller practices really have the toughest time as they do not really have
the bandwidth or the understanding or the resources to really understand it and
take the time to wrap their heads around it. If you have contacts at state and
county medical societies and get these issues on the agenda at a meeting, I
think that will be really beneficial.
MS. SEEGER: I hate to steal the mike back from Laura, but I just also want
to parallel on that. I did see some statistics years ago that 30 percent of
small health care providers might affiliate with the state, local, or specialty
association, very few. That is why we have been trying to work through Medscape
to provide this free CME credit. It is a little bit of a carrot to them. At
least take a look at what we are trying to offer.
But there are so many competing areas of interest that they have, areas that
they need to comply with. This is time consuming. It does take investment. It
is not necessarily something you can bring a consultant into to do for you. It
really is a roll up your sleeves activity for the entire practice.
We have worked with to produce these games, worked to produce these videos.
Really the little videos we have done on YouTube that are a minute long really
— I do not want to say it is HIPAA for dummies, but that really is what we are
trying to get out there. They have had about 270,000 clicks on them. I think it
is mostly vendors.
I just think that it would be very helpful hearing especially from the
Subcommittee, some — we have tried to think outside of the box. I think we are
at a point here what more could we be doing. Not only with NCVHS, but with
other entities like WEDI, with HIMSS. It is our problem. It is our collective
problem. What can we do collectively to get past the — the associations aren’t
going to be our route I don’t believe.
MS. ROSAS: One of the things that happens is you just end up preaching to
the choice. You go to anywhere and everyone in the room understands it and gets
it and nods their head. You need to get to the people who are not preaching to
the choir and that is a real challenge.
DR. GREEN: I want to follow up with this in a minute, but, Paul, you are up
DR. TANG: Fortunately there is a big choir to preach to though or a lot of
people not in the choir according to your reports so a number of things. One,
again, it is always refreshing to hear your reports because you do so much to
create the content. I think we are stuck in the — is it visible and available
at the places it needs to be. That is one question. Are all your things on the
CMS — how to do meaningful use websites, not just distributed. The
distribution is nice, but it is not there when you need it. I assume it is in
the right places at the CMS for meaningful use. Those are the kinds of things.
It sounds fabulous content, but I do not know. It has to be there at the place
when you look for it. The distribution is not when you are looking for it. That
maybe still some work to be done.
The other is you talked about the reports from I guess you are saying last
December 2012. It has not been published yet. I do not even know how many
people know about this problem. One thing is to invite you to policy committee
to let us know so that we can even know that in a sense people who have
collected meaningful use dollars or what percent haven’t actually qualified an
audit. Because that was explicitly the reason we did that to raise the bar, to
raise the ante, and we need to have follow up. And part of it can be
dissemination that is even a problem and then the threat of recovering those
monies could just raise the visibility. We just have to do everything possible
to raise the visibility of this issue, which I am surprised not going away. I
guess that is one possibility.
How can you make this information come out more quickly like a year’s delay
so that we could have a bit more to act on? Like I say, this is probably
something a lot of people do not know about. If we knew about it, we could
probably help you with the visibility. Are there ways to get the information
out more quickly? The lack of compliance.
MS. SEEGER: With respect to the audit findings, we will take that back and
see if we can move forward on escalating the release of data.
DR. TANG: How do we act on the lessons learned from — the process of
auditing can be compliant, but the process is also education. We cannot do the
education if we do not have the data to act on.
DR. GREEN: Linda.
MS. KLOSS: This is just a quick follow up to Paul’s comment. Earlier there
was some ambivalence about whether those audit findings would actually be
released. I do not think it is even necessary that they be released in total.
What comes to my mind when I think about the utility of that is what happens
when the Joint Commission releases. Here is what we find on our accreditation
visits. Our industry is very used to sitting up and saying these are the top
ten and taking those to heart. I think that kind of top ten short list, here
are the areas that we are getting into biggest trouble. I think something like
that could be mobilizing and disseminate through the association. I do not
think you need to release all the nuts and bolts, but what are the high-level
lessons learned? I think a lot of people would rally around that.
DR. CHANDERRAJ: I think to follow up on that, I think the RAC audits come
into your office and they do not tell you what they are looking for. Physicians
and practices are at a loss to know what they are looking for. If this
information widely spread that they are looking for risk analysis is the top
factor for not qualifying for meaningful use or whatever it is this, the
transparency is not there. They are asking physicians to be transparent and
posting the charges and everything, but the insurance payers are not disclosing
how much they are going to pay for any code. There is no transparency from the
payers. We do not know what we are being audited for.
MS. SEEGER: OCR did publicly release the audit protocol before the audits
even started. That really is a roadmap for compliance. We have been completely
open. We put all of the cards out on the table. This is what we are looking
for. We have a top-level report from these findings that we have been
presenting on to the usual suspects. Maybe one of the things that we can do
that is quick and easy is to get the PowerPoint, just post those findings up on
the audit website.
MS. KLOSS: I have reviewed the PowerPoint and that is what got me energized
about let’s get this out. I think that would be helpful, but I think it would
be more helpful to put it in a one or two-page checklist.
MS. SEEGER: We will work on doing that. Thank you.
DR. GREEN: The word audit has its origin in a Latin word audire, which
actually means what? To hear. But once the word audit is used where there is
money attached to it, it seems to mean something else. I really warmed just to
these last comments about how important it is to audit to learn and then to
accelerate and escalate the movement and that sort of stuff.
We have another report from ONC. It is in the E book for the meeting. It
starts on page 24. It is a five-slide presentation by Judy Murphy who is
unavailable. I just want to call that to your attention. It has additional
information about what is going on at ONC. It has a nice vinyl slide about the
meaningful use payments and that sort of stuff. We are not going to go further
into that, but I just want to call attention to that.
The comment that I wanted to make with your indulgence here for a moment is
the ACA has a section, I think it is 5204, we have talked about some time here
and there in subcommittee meetings and elsewhere that actually authorized, but
did not appropriate any funding for the most successful innovation strategy
known in the history of humans, which totally transformed the agricultural
industry in the United States over the last century. Wildly successful,
scientifically based, known to work. It is in the law of the land that the
United States needs one of these things to help with health care reform. I
would argue that about half of the comments made and our presentations and
discussion today reveal that there is no mechanism presently in place to drive
this to the ground to the local level, to the small practice, to actually help
people. One thing to post it and another thing to do it.
This is important. This is a very big deal. There is a lot of urgency here.
There are a lot of things that need to be changed and done. This does not get
done in Washington. It does not get done in State Capitols. It gets done down
at the community level where people are just trying to do the right thing, take
care of the folks. We are missing a mechanism to transform the industry other
than regulation, punishment, posting stuff on the website, et cetera.
Everywhere I go and I go a lot of places people want this to work. Patients
want it to work. We are not using just adult learning theory and how people
learn and how people adapt to things. We are not doing it. But my point is not
to be pessimistic, but to point out that there is a way to get this done
locally that is proven that we are seizing and we are not using, but we could.
And to do so generically would help so many of these particulars and these
Thank you for the indulgence. Every now and then I cannot repress myself. We
will reconvene at 5 after 11. I want to thank our presenters today and I want
to thank all of you. This did not feel quite as rushed and it felt like we
really got to some significant issues that are really important to our meeting
today and I want to thank our presenters for helping us the way you did. Thank
you very much. We will start at 5 after 11.
DR. GREEN: We are now going to turn to our committee co-chairs and start
laying the groundwork for our future activities and direction. I personally
think we are off to a good start. If you look at this, do not worry too much
about 10:45, 11:15 and 1 o’clock. We will just morph this all together and
follow the leadership of our co-chairs here for the next stretch of the road
here and we will eat lunch.
I think we are going to start out with privacy and security.
MS. KLOSS: Thank you. I will lead off and then Leslie will pick up. What we
intended to do and have put a few slides together just to get everyone on the
same page with regard to the work of the subcommittee over the last year or so
and at least a beginning straw man as to what our 2014 plan will be. Our
expectation is that we will revise that at this afternoon’s meeting and come
back with something clearer that reflects the discussion from not only our own
subcommittee, but others.
Three tracks we will touch on. First of all, the work from the stewardship
framework for community use of data, the work we have been doing on HIPAA and
related HITECH privacy issues and actually that list appears to be growing by
the moment. We certainly had a lot of interesting discussion at yesterday’s
public health standards subcommittee on privacy issues. Perhaps the way we have
titled this, HIPAA and related HITECH privacy issues, is too narrow, but we
will clean that up as the subcommittee works this afternoon.
And then the next frontiers. We tried to periodically step back and look at
what are the more future focused issues that we should be taking up now so we
are offering some — we have some useful work done when the problem presents
Just quickly to go through the stewardship framework. Many of you will
recall that last December we finalized a letter to the secretary on a
stewardship framework for the use of community health data. That framework had
eight principal areas and discussion around those and these were adapted from a
number of sources, the fair information privacy areas and adapted to the
community data setting.
We participated and we had four recommendations that came out of that to
facilitate the development of models of stewardship, to support the guidance,
case studies and creation of training materials. Those were our four
recommendations in that letter.
We participated in the joint roundtable in April with populations and
standards. We tested those four recommendations to see what the community
representatives felt would be most useful for the subcommittee to work on.
Essentially, the outcomes are listed here. They did believe that it would be
useful to translate the stewardship framework into very practical especially
case study type resources, find out who is doing some of these types of
stewardship well and tee it up as case studies.
We had a lot of discussion on getting past barriers and that is really a
follow on to the discussion we just had before the break that how privacy is
understood, how HIPAA is perceived in the field, how laws are understood
inappropriately interpreting the restriction of data sharing. Breaking down
those barriers and just what we talked about with OCR.
Understanding public health privacy. We have explored that some in
yesterday’s hearing. They reiterated the need for technical assistance in some
specific areas, de-identification, the mosaic effect, working with small
numbers, and distributed queries, and areas that were particularly problematic.
That was our take away from the joint roundtable.
We did do follow up with privacy subgroup that emerged voluntarily out of
the roundtable. We asked them out of the eight principles in the stewardship
letter what would be the priorities. Three priority areas kind of emerged. That
is where we are at.
Now what we have done next is take that work to a research plan outline and
we have made a proposal to Marjorie for funding for a research assistant or
somebody who can work with us under contract to do five things. First of all,
do an environmental scan of prior committee reports, published literature, less
formal materials on stewardship practices and the communities that are
employing them. We have heard from a number of communities, but we need to do a
little more comprehensive environmental scan.
A follow up in a more structured way with the communities that we have
involved and engaged in the community health data work to date and really
trying to draw out from them where there is notable stewardship practices.
Follow up with others who may have useful information, draft write-ups of
promising practices and then final write-ups after we have done some consensus
building with the communities.
We have mapped out a resource request that would and I will show you how
that drops into our work plan for 2014, but that is teeing up some work that
really is certainly beyond the volunteers on our subcommittee to do that level
If there are no questions on that then I will just move to chunk two, which
is the HIPAA and related HITECH privacy. I think at this point I am going to
ask Leslie to tee up where we are at in her role as representing NCVHS on the
tiger committee. We will frame up the accounting for disclosures issue and
discussion, which I am not sure, Larry, when you will want to have that more
detailed discussion, but let us tee it up and see where that leads.
DR. FRANCIS: And I apologize. This is not in the slides, but it has been
moving even through email exchanges during this meeting.
I do want to say one other quick thing about yesterday’s standards hearing,
which is that I think that we heard on a number of fronts about the same kinds
of barriers that in the community health data discussion were affecting a lot
of the public health uses of data and the need. In fact, several people said
that they would like very much to see HHS take the lead in proposing some basic
stewardship guidance particularly with respect to privacy. I think those two
issues really are in tandem with one another.
MS. KLOSS: So the research we would do on the community could be helpful.
DR. FRANCIS: Would also be applicable to the other.
As I understand it, the plan is still for the tiger team to discuss final
recommendations on a conference call on the 18th. That is a public call that
would then go to the ONC policy committee on the accounting for disclosures. It
would be up on the ONC policy committee as Paul said on the agenda in early
DR. TANG: I just checked with Michelle. It was OCR that requested it to be
DR. FRANCIS: OCR wanted it on a fast track. I think it is fair to say that
although recommendations have not been finalized at this point, there appears
to be coalescence on the following views. What was described as an access
report, which is a report to patients of anyone who has access to their data is
unworkable and not useful for patients. I think there is going to be a
recommendation that an access dump is not what serves anybody.
I think a second emerging theme is that there is a distinction between
access internally, where internal is defined as anyone with privileges on the
system and external disclosures. It may be that the recommendation that emerges
has to do only with respect to people not with accounts on the system, which
would be external disclosures.
It is also the case, however, that there is still a lot of fuzziness about
that question of what counts as internal, external particularly for large
systems where anybody with privileges might have access, might have entry into
It is also the case that I think everybody agrees that the technology is
most developed for generating a report through EHRs that that is the sort of
more technological of disclosures made through EHRs.
PARTICIPANT: You mean patient access to their EHR?
DR. FRANCIS: No. I mean that tracking of disclosures made through EHRs
narrowly understood as EHRs. But a lot of the concern involves and this is on
both sides disclosures made from electronic records that are not EHRs and how
to deal with that is an issue. What the tiger team is going to recommend will
be to start with pilots about accounting for disclosures through EHRs, pilot
that because of the huge technological problems and then see where it goes.
That is a possible story that is going to come out of this. But I think there
is some concern about how narrow that should be and whether that it is too
narrow. I am just stating that as an open issue right now at this point.
This will be my own personal reaction, but the reaction of others that I
have heard as well that there is some concern that there was pretty limited
representation on the patient side at the virtual hearing. There were three
representatives. Whether the committee got a full range of the kinds of patient
side concerns I think is something that is at least a bit of a question.
Part of the reason for attention to access is what I am going to call the
snooping problem. That is that somebody within the system might inappropriately
look somebody up: a parent who is concerned about a relative’s condition, a
snoopy neighbor, a potential stalker. We have heard in the past about health
information exchanges and those kinds of problems. Not an access dump, but that
is why there was concern at the congressional level and at the level that the
original access NPRM was issued about internal looking stuff up./P>
Right now, it looks like the proposal is going to be that instead of an
access report attention needs to be directed to better education, audit
capability, investigative capability in response to a complaint instead of an
access dump as a way to handle what I am loosely calling the snooping problem.
Now whether this committee might have something to say about how all that could
be handled I think is again an open question and I am going to turn it back to
Linda on that point.
MS. KLOSS: I listened certainly to the virtual hearing and then the other
meetings. I listened to the dialogue. If I put my provider hat on, I heard
three things that I think are important to the discussion. Number one, right
now there really is no technical path forward on this. That this is so much
divergence in audit log, the way they work, what the contents of them are
across the EHRs that anything that required that that mechanism be used for
disclosure. We are just really so far from needing prime time.
I think that what is interesting about this issue it occurred to me and when
standards present later talking about a roadmap. This is a classic roadmapable
issue. If you wanted to drive toward this to be able to be effective in a
reasonable way five years from now, you should be starting to look at basic
content standards for audit logs. Get those moved into place. Get people
working with them, understanding how to use them, testing them with patients.
And then maybe this is a requirement that is feasible for the industry five
years from now. No technical path forward with regard to audit logs being the
mechanism for doing this. That was one of the perspectives that the patient
representatives brought that this is all doable today. Well, I think the
hearing clearly pointed that that is not the case.
The second thing was testimony on the significance of the cost.
Intermountain Healthcare was one of the testifiers who said that their estimate
was that this could cost them $100 million. Even if it is wrong by 50 percent,
this is a huge cost. I am sure Jack and others would bear that out to begin to
prepare to do this.
And the third was that there are virtually no demands right now. Patients
are not asking for access even though perhaps they could.
It also argues from a roadmap perspective gosh, there are so many other
things that we should be doing. Number one, we should be really perfecting
patient access to their electronic health records and really putting a lot of
effort behind that.
Second, strengthening the investigative processes. If there is snooping,
what is the stewardship obligations, the governance obligations within the
health care organizations and helping people understand the process and how
their information is used more broadly.
I do think that my opinion is that this committee could craft a
recommendation with regard to this. I think it is something that we probably
circle back on when we think about the notion of the interrelationship between
these kinds of proposed or perspective mandates and their implications.
DR. FRANCIS: One thing with respect to the timetable. If what the tiger team
does talk about is only disclosures for TPO outside of an EHR, which is what it
is looking like they are going to talk about, all this other territory is
essentially left open. It will not be foreclosed by whatever the policy
committee does in December.
MS. KLOSS: And health care organizations have formal processes for formal
disclosure and certainly keep track of those kinds of disclosures for their
internal purposes. More narrowly defined that might be a starting point. I
think this is one of those issues where what are we trying to accomplish.
I think the last part of this is the next frontiers. We will hold this 2014
work plan until tomorrow or we can just walk through it.
DR. GREEN: Let’s just walk through it.
MS. KLOSS: This has not been reviewed or approved by the subcommittee. This
is Leslie’s work, my work just to put a straw man up. We think that by quarter
three if we have the research assistant and we do that environmental scan in
the research, we would shoot for a report on stewardship best practices for
community use of health data. We would see that as a September report.
Recommendations to the ONC tiger team on accounting for disclosures, we would
see that coming this year.
We put a placeholder in for a hearing in April on these best practices as
they are emerging so that we would have a hearing and that would allow us to
polish for the September report.
And then we put a placeholder in for one more hearing on a forward-looking
issue. We do not know what that is yet. Patient generated data. There are just
a lot of things that are nipping around the edges of HIPAA that it would be
useful to explore today and do a hearing next year. We would look to the
committee and have a discussion with the subcommittee on what that might be and
I think be better prepared to discuss that with you tomorrow.
DR. GREEN: Terrific. Thank you two. Let’s go to Marjorie and then to Bill
and then Raj.
MS. GREENBERG: Thank you. We received your request and we are generally
positive about the possibility of working together on getting someone to assist
you particularly because you have identified someone who can do it, which is
often a big piece of it. I think wherever we have done this successfully, we
had help from the committee members. These are specialized types of increase.
We will work with you on that offline assuming the subcommittee wants to
proceed with what you have described.
On the recommendations to the ONC tiger team, given that it is unlikely you
would be able to bring something to the committee tomorrow to approve — were
you thinking of doing this through a process we have used in the past where
even the subcommittee could have a very open advertised call, but in any event
whatever is brought to the full committee for approval we would do an out of
session call open to the public, which I think on something this — you really
cannot make any recommendations without there being that process, but
particularly in this case where it is a really very visible and an issue of
concern to broad stakeholders, which I think it probably be best to actually
put something in the Federal Register. I am just saying timing is of the
When is the policy committee meeting?
DR. TANG: I will look at the exact date.
MS. GREENBERG: It is unclear whether this would have to —
DR. TANG: The fourth.
MS. GREENBERG: We definitely have a timing issue here. It is not clear that
this has to be done before the fourth, but we need guidance on this.
DR. FRANCIS: One of the things we could do is we could make as a committee I
think if people wanted to do this, we could make a recommendation to the
secretary that this should be handled through notice and comment rule making.
MS. GREENBERG: There is already rule making out there.
DR. FRANCIS: Well, there is a notice of proposed rule from 2010. What is
going on with respect to the policy committee is the policy committee will make
recommendations to OCR about what a proposed rule maybe ought to look like or
what OCR ought to be considering in terms of rule making.
MS. GREENBERG: Will that include saying don’t take the other one. There is
something out there right now.
DR. FRANCIS: But we could say there is a notice that has been in abeyance
since 2010. But I think this committee could say to the secretary that given
all the complexities of this we think that there should be another rule making
MS. GREENBERG: Something like you could bring tomorrow to the committee if
you can agree on some language. It would have to be obviously very high level.
DR. FRANCIS: Just another NPRM.
DR. STEAD: This last discussion is getting at my question. All of the
comments you have made sound like this is headed in the right direction. I may
be missing something, but it computed from at least my perch.
It seems to me what we really need almost to be have laid before us is the
process going forward so we actually would know as a committee how to usefully
interact with that process. I do not have that picture. In this discussion, I
do not really know that we do. I would just advocate for. I think this really
is an important issue. It sounds like it is not going off track at the moment
the way we thought it might have been at the last meeting.
DR. SCANLON J: My guess is it would ultimately require a proposal. It just
was not ready for the — and other things. I am wondering, Paul, is there just
process wise — at the health IT policy committee, the committee will consider
the recommendations from the tiger team, but there is discussion and
viewpoints. There would be a possibility if NCVHS had formed some principles or
recommendations to bring that up. It would be on the record at least. Right
now, what would you base your recommendations on other than the tiger team’s
discussion? You could say we heard during that — besides, it sounds like the
tiger team may be heading in a direction that we may agree with. I do not know.
There could be a sense of the NCVHS, a set of principles that we would support
this or we would raise this issue. It gets on the record for the policy
committee. It seems like we do not have a whole lot of — there is not time to
do much else. But that would mean that the committee would have to agree to
some sort of statement or principle.
MS. GREENBERG: My concern and maybe I misunderstood you was that first of
all the committee has not seen the tiger team report.
DR. FRANCIS: That is correct. It is not finalized. Members of the tiger team
got a preliminary look at the slides about 12 hours ago.
MS. GREENBERG: But you expressed some concern about issues that it was
DR. SCANLON, J: It will end up being complaint driven.
DR. FRANCIS: If the only way to handle internal misuses is patient complaint
driven that is something that I think — obviously, that is a huge can of
worms. That is not anything that can be settled in the amount of time for this
meeting other than the recognition that it is an open issue. It is particularly
I think an open issue in light of what we learned about that inadequate
security risk assessment kinds of things because after all administrative
security is part of security.
DR. GREEN: I think that the exchange following Bill’s comment really
verifies that he was right. There is some congruent showing up here compared to
where we were last time. What we are really missing is a process map about how
to participate properly.
Raj, I think you were up next. Then we will come back to Vickie. I want to
create a space for Maya to make any comments she wants to as I see her standing
over here. I feel better and then I also feel a little anxious. I want to see
what she is thinking too.
DR. CHANDERRAJ: The whole thing about disclosures from the electronic health
record. I was wondering if de-identifier by the provider providing the
information to the community project is made by the provider all they will get
the information is the county or the zip code and the city they are living in
without the name. But if they want individual contact with the physician — for
the patient, they can ask the individual consent from the provider whether they
can directly talk to the patient and the patient can give a consent at that
point and then the individual analysis and disclosures can be made from that.
If the de-identifier is made at the provider level before they send out
DR. MAYS: I just want to raise something which is for this group as well as
for the pop health group, which is we keep talking about the work we are going
to do for the community, with the community, et cetera. But we do not have the
process I think integrated well enough into our workings. We had talked before
about getting staff that are in some of these agencies where they have the
quick ability to get comments from community groups, to get comments from some
of the patient-driven side. I do not think we have done that. We end up either
needing another hearing or something else. We even started out with some of the
individuals who came to the hearing. I am forgetting his name. We are going to
follow up with the zero divide and all that.
I think it is important that as we do this planning that we do that even if
it means that we get some community agency groups that are here in DC. If we
cannot afford to travel them in, I am sure among us we can find — because they
have their homes often here in DC. But we really need to do that because we are
losing traction hearing their voices. And then when we are on a call, we do not
have this group or that group. I do not quite know what the process is. I know
Susan Queen was starting to deal with HRSA and SAMHSA and others. But I would
like us to put that back into our agenda as part of this planning.
MS. GREENBERG: Actually, the data workgroup is adding — were we talking
about Chris Fulcher? He is joining that if that is the person you were talking
about. He is joining it, but he has had some health issues. Hopefully, by the
first of the year, he will be on board.
You were tying that in with what Leslie said. It was a very strong position
about patients. I listened in on the call too. Patients should have access to
everything and let them figure out if they really need it or want it or
whatever. There wasn’t anything to the right of that.
DR. MAYS: It is a more general issue. We are doing community stuff. The
people we usually have around the table are the federal agencies. But we need
to make sure that we can get to them quickly and that we have, which is through
these federal agencies and then that would increase the staffing that we also
have to help us get this work done.
MS. KLOSS: Which would be of use to populations and all of the subcommittees
DR. FRANCIS: I take it though your point was much more relevant to the
stewardship stuff rather than to the accounting for disclosure.
DR. GREEN: I would like to give Maya the last word for this segment. Is it
acceptable to you if we keep going a little while longer here, and cover the
populations subcommittee stuff before we break for lunch or are you starving
right now? Can we go a little longer? Maya, and then we will make a transition.
MS. BERNSTEIN: I am Maya Bernstein. I work in ASPE and I am the lead staff
to the Privacy and Confidentiality and Security Subcommittee of this committee.
On the question of the relationship between us and the tiger team, what I
heard Leslie and Linda present is that they are likely to resolve part of the
question about accounting for disclosures in a way that maybe acceptable to
this group. But Leslie, I think, is pointing up that there are gaps that they
are not going to address and that those gaps actually are in the center of the
purpose for having the statute in the first place so that the snooping idea and
so forth. The accounting for disclosures is intended to help people who have a
particular problem with a disclosure.
One of the reasons is we do not expect demand for that to be very high
because that would be an indication that lots of things are going really bad.
People only really need an accounting for disclosures when something goes
wrong. We hope that that happens infrequently. But when that happens, it is
very important for them to be able to back track and find out what happened to
their data and what the source of the problem is so that they can fix it. If
that part is not being addressed by the tiger team that points to a possible
opening for us to figure out what the answer to that problem is. I think they
all are going to deal with part of the problem.
Linda talks about a past to a standard, the way we would normally deal with
something like this. It is just the kind of problem. She identified that it
lends itself to having a standard and figuring out what data is necessary, what
the formats are, how do you share it and so forth. That is an area where this
committee does have some expertise. That might be part of the procedure if you
wanted to go down that path.
And then I think Leslie’s suggestion of another NPRM or essentially a way to
extend the rule making process because we have lots of questions that are still
open. It is not clear how it is going to be resolved is a partial answer to
Bill’s question about what is the path. We could actually suggest. The
committee could suggest to the secretary a further process that might be
necessary to get to the answers describing that there are many complications,
that it is quite costly right now and so forth, but laying out some of these
things as a possible path. And the path could be the recommendation rather than
the content of the answer. You could recommend to the secretary that she take a
particular procedure in trying to address this problem as we go forward rather
than trying to come up with the answers. I think the tiger team is only going
to solve part of the problem. I do not know if Jim would think —
DR. SCANLON, J: There are just different avenues here. The broader one is a
letter to the secretary about the issue more broadly. That way ONC and OCR have
to consider it and it would feed in.
My worry is I do not think — it sounds like we need to say why, what issues
have been identified, how. It sounds like we are not quite there yet. I think
the themes are probably what we have heard from other sources. The tiger team
will report to the health IT policy committee. They deliberate and make a
recommendation. It will go into ONC and OHR. That is not the end of the world.
The committee could then recommend that there is a need to open this up again.
MS. BERNSTEIN: When I looked at Linda’s points, I was thinking it is a bit
awkward for this committee that makes recommendations to the secretary to try
to make recommendations to a work group of another advisory committee. It is
not exactly how this committee normally works. We can make recommendations to
the secretary about either problems that still need to be addressed or a
procedure for if you want to slow the process down because you find that there
are problems or there are things to be addressed. You can make a procedural
kind of recommendation rather than a substantive one.
DR. FRANCIS: One of the things we could discuss would be — it is pretty
clear I think that as people were saying some of the largest concerns about the
“access” report, which was the 2010 NPRM. I think there is pretty
good agreement that those issues are going to be met, those concerns in
whatever it is that comes out from the tiger team.
But I also think there is a lot of sense that that is not the end of the
story. Recommendation of — what I want to see us discuss is the whole set of
questions about how to respond to the risk assessment issues that were raised
earlier today in conjunction with how to think through what we might be able to
say to the secretary about inappropriate internal access. That is not a project
we solve today, but it is something that we make it very clear — if this is
what the committee wants to do that we are interested in and whatever it is
that comes out of the policy committee should not be taken as the last word on
that because it is simply not addressing that.
DR. TANG: It sounds to me that where it is headed, the discussions are
headed is coincident with how this committee would have come up with anyway. If
history replayed and the secretary said I would like you to have something by
December, we would probably end up in this very space, not being able to deal
completely with — in a sense, we did deal with the access report. We found it
unmanageable and not useful. They are saying let’s not do that. It is also by
the way expensive. That is a very good today’s recommendation, which does not
close off —
Fortunately, there was an inclusion of NCVHS in the process. NCVHS can add
to that its input by this committee saying we agree with the following things
and yes, this may be open to future deliberations and just support that. I
think we are ending up in the same space as Bill said despite maybe some
concerns. But we are ending up in a place that we could have almost said we
would have ended up if we were given the charge. We can speak in the future if
MS. GREENBERG: I just have one question, kind of a process question. I agree
with you. But we have the good fortune also that you are on the national
committee and also co-chair of the policy committee, which will be getting the
tiger team report. It is something to think about going forward while I am
sitting in my rocking chair. How to deal with this kind of situation in the
future or the committee is well organized or to deal with this situation like
this. We also benefit from the fact that Leslie is on the tiger team. Those are
not things that are in charters or written down anywhere or required or
anything like that. I just put that on the table as something to think about.
It may be we have those positive collaboration or coordination situations and
that may do it for now. It does raise questions. If those things were not the
case, how would this committee deal with some of those issues? I am not looking
for an answer, but I just felt it was important to note that.
DR. GREEN: We are not alone. I think this discussion has done us the
additional service of crystallizing how important it is first, to get the what
clarified so that the map about how to get it done can be understood. I am
having a hard time at the moment getting passed the visual image of Marjorie
and Paul in rocking chairs. I am working at it.
This looks like Bruce is going to lead us off, which keeps being referred to
by some — it was Vickie who has shortened this to pops committee, which
creates other images for me.
DR. COHEN: We have a three-part presentation here. We will start and see how
far we get. I thought a useful place to begin would be with the APHA session
that we participated in because there is a chance to synthesize some of our
thinking with respect to communities as a learning system. I will actually ask
Vickie who did a fantastic job of pulling it together to brief us on that. That
will be number one.
Number two, after that happened, we had a subcommittee call and we have done
some reflection. Bill had done some outstanding work pulling together some
ideas and themes to move us forward in the future. I will turn it over for him
to discuss that.
The third piece, which we may or may not get to is what Nicole just passed
out, which is the framework or matrix that we hope to work on this afternoon
and tomorrow that moves us forward and laying out specifics around our work
Vickie, do you want to give us some highlights about APHA and then I will
quickly go through some of my slides?
DR. MAYS: Sure. I will keep it brief. I also want to say that both Bruce and
Justine were stellar as usual. We were a great team in terms of putting this
together during the APHA. People did come up after – they had missed the
session – they came up and they had heard about it. The community group was
upset that they were not listed as sponsors. I just want you to know that we
had some good feedback that people went and talked to others about the session.
The session was called Supporting Health Data Needs for Community-Driven
Change. What we did was pull together a set of speakers that on the surface
looked very diverse, but in terms of the issues and points we needed to hit,
did it very well.
We started off with a person from the IOM, Claudia Grossman, who again is
— that is the home of where they are actually talking about the learning
health system. She gave an introduction to that.
We had Marc Rodwin who was there in Tufts, who is a J.D./Ph.D. who actually
talked about the issue of the public good of data and who owns it. If you go to
the website, he has several papers in which he actually talks about some of
this in terms of your tax dollars pay for data collection and then your ability
to access it. But he answered a lot of questions. It was very helpful to see
where people’s questions were about what they have access to, how they can
access it, and whom they should be going to in order to do that. I think we
should keep that in mind as we go forth.
We had a person who is from Wooster(?)who also I think made great
contributions to the panel in terms of Claudia Savage, who from the community
agency, talked quite a bit about what it takes in terms of the data. We kind of
— to get the community as involved. We are trying to get data out to people
who are looking at us and saying how many times have we heard this story
before. But it was more the notion and I think Justine. in a later email,
brought this up about we need some engagements. We have to think about as we
push things out. It is almost like what we saw today. You push it out. It is
sitting there. People cannot find it or they are not engaged to the extent that
then makes it really work.
Bruce was a discussant. I think that is where we will turn to in terms of
PARTICIPANT: And Pat.
DR. MAYS: I am sorry. Pat. Pat Remington was there as well. As you know, Pat
does the report card. What he talked about in terms of the report card was ways
in which this report card has actually caused change to come about. I was
standing listening later when I think it was Savage that went up to him and
talked about how they were able to get attention to infant mortality based on
the report card that came out. Again, the issue of us thinking about the format
in which we issue things if we are really trying to engage the community is
also a critical piece of our thinking that we need to also engage them in ways
in which they can use it as opposed to here it is and then they figure it out.
DR. COHEN: Justine, do you want to add any observations before I roll
DR. CARR: I learned a lot from that panel. I think Claudia did a great job
setting the big picture. I think Clara’s comments about you can give all the
data you want to the community and if they are not engaged, it just sits there.
And I think that really resonates with what we have been talking about and
really sort of creates a very compelling story that we should be balancing our
time in terms of thinking about engagement.
I thought Pat Remington’s comment about when they first put the data out. I
think it was low, medium, high, good, pretty good, great. But it was not until
they said you are number one and you are number 50 that they got incredible
action. It seems so simple whether you do a five-star or a numeric where you
stand. They had a little bit of mid-course correction, factors not done. But
his point was get it out there. Get the engagement. Get the feedback. Make it
better. But that being number one mattered a lot and being number 50 mattered a
lot as well.
DR. COHEN: Thanks. I will focus on the slide — I described what NCVHS was.
I will just roll through these quickly and focus on the ones that I think are
most germane to the development to the population subcommittee agenda moving
forward. This is essentially what Vickie and Justine described and I was trying
to think about how the work we do coincided with the comments that were made
during the session.
Another thing that Clara mentioned was the importance of qualitative data.
Again, I do not want to have that slip through the cracks whether it is using
social media to take the pulse of the community, which I think is a perfect
integration with some of the work that Justine is going to lead in the data
work group or thinking about how the federal government can be more active in
providing technical support for collecting and analyzing qualitative data. This
is huge in local communities. We have done very little in this space.
I liberally stole these slides from previous NCVHS. I am happy they were not
copyrighted. This is freeware if anybody likes any of these slides. I talked a
little bit about a learning system. Talked about some of the work we have done
highlighting certainly this report and the joint roundtable report, which I
think brings up another issue. It will be great to get this report out and
widely circulated as well because it has some wonderful stuff in it that I
refer to a lot.
I also talked about the significant role the National Committee has played
and the issues around privacy and confidentiality highlighting this seminal
report and actually the same slides that Linda just presented about the
stewardship framework and recommendations about moving forward with privacy.
Then I really tried to focus on where we as a national committee saw our
place at the table. Again, I think our definition of community is one that
really resonates with the variety of different groups. It did so at the APHA.
A key learning that I wanted to highlight is the role of local data.
Consensus about local priorities emerges when quantitative data are combined
with community members’ insights and preferences. This continues to be a bottom
line. As we move forward and as Bill lays out our framework for moving forward,
I want to just make sure we do not lose sight of this.
This is a convergence of the population health subcommittee message and the
full committee charge. I took the author’s liberty to intertwine what I think
the population health subcommittee should be doing and the lessons we have
learned for the full committee out of our recent hearings and roundtables.
Clearly, the federal government wants to liberate data. Clearly, communities
putting this together.
The emerging themes here for us are coproduction and co-ownership. I do not
want to lose sight of understanding community readiness because of communities
are not in a position to receive information or support or assistance we are
trying to provide. We are wasting our time. That theme was discussed earlier
today with respect to OCR report.
Leveraging a key event is helping community change. The issue of identifying
the key communities is authentic. Using law to solve problems rather than as
impediments. I think this is part of the discussion we had at the roundtable
about how to proactively law and regulation to help support community
Bill will get to number nine and ten more directly when we discuss the
potential aligning clinical and public health data.
This emerged from our last roundtable and subsequent discussions. What role
can the federal government play, and what role can we as a national committee
play, in promoting the modernizing of the federal role?
Certainly, these are some of the ideas that we want to build on as we move
forward serving as the intermediary to connect communities and data. The issue
about what public health really is actually came up yesterday in some of our
discussion at the standards hearing about really we do not serve public health
well if we keep the definitions narrow and siloed. We really need to expand
thinking about education, housing, and other issues that are really public
health issues. If we do not integrate the data that we are providing the
communities with those data sources, nothing will ever change.
A theme for us is trying to figure out how to reinvigorate the federal
workforce to provide support. We just briefly discussed as part of the privacy
and security committee continuing the work around stewardship. Core indicators
came up as well as a theme. I do not know whether there are too many indicators
or not the right indicators or too few indicators. I still do not know. We have
to create some clarity out of the morass of indicator development that has been
spawned over the last ten years. I think we can have a role in providing
recommendations to the department about how best to do that.
Here is where I hope the population health subcommittee will be going and
where the full committee will be going as well. Harmonizing the standard health
indicators that I just mentioned. Having better insight about providing
meaningful support to communities. Working with integrating these different
data streams and developing the integration of population health and clinical
data. Bill will also be talking about evaluating how best to repurpose and
expand existing data and really focused on providing the secretary with some
Marjorie, I think this is your slide.
MS. GREENBERG: I recognize it, but I did not remember the source. I like it.
DR. COHEN: Any questions for me while we load Bill’s slides?
DR. MAYS: I just want to reiterate the point of again you can see why we
need the community with us as well in terms of some of the objectives of where
we want to go. We need those voices at the table with us. Any way that we can
get that from either staff or participants we need.
DR. COHEN: Thanks. I hope you continue to hold our feet to the fire to make
DR. STEAD: We distributed a written version of the latest evolution of the
framework that we are talking about in the agenda book. It is evolving. It now
represents input of several conversations in the population health committee.
We hope that through the engagement in this meeting that we will be augmented
as need be to reflect the perspectives of the privacy and standards group so
that it could be a framework for the committee as a whole as we move forward if
that was what the committee wanted to do.
This PowerPoint is up one level from the text because I thought it actually
might be easier to grasp the concept if I got up above the detail and sort of
talked through how it hooked together. I tried to do that here. I started with
my Marjorie has told me somewhat narrow view of the charge of NCVHS, which was
fully spelled out on Bruce’s prior slide, but this is the particular portion of
that charge that I am focused on. In essence, everybody in whatever space they
are in if it is public health as the conversation about communities involves
the clinical parts of those communities.
Medicine as it is trying to deal with ACCA and moving from episodes to
population management is moving in a convergent direction. The scientific
clarity that has been obtaining that you cannot separate physical and mental
health to a logical basis. The convergence is changing the game.
MS. GREENBERG: I agreed with that.
DR. STEAD: You only commented on my narrow — most people do not comment on
my view being narrow, but my narrow view of the charge. You were more generous.
You said it was the view of the population health subcommittee.
But I really think we have an opportunity to step back and rethink the data
stewardship and measurement holistically. I will come back toward the end. I
think that although people have talked about convergence, they are talking
about the whole enchilada and it is very hard. All the pieces of programs and
disciplines and everything else. If we could actually figure out how to
converge or harmonize the data, it would provide a key enabler in addition to
providing a forcing function to do the other work. Just keep that in mind as we
Talking about convergence from a data measurement perspective. In essence,
it is about thinking about the population at multiple levels and at multiple
axes. It gets complicated. It is not about integrating the data across all
this. Homogenize it. It is not about rolling it up. It is actually about
recognizing how the data captured and used at these different scales relates
and can be linked to narrow what you have actually got to do at any one scale
while giving you really robust analytic capability because you have a view from
multiple scales. That is the key idea. I tried to put the disclaimers at the
bottom. Scale, abstraction sparseness is different at each of these levels. The
approaches to measurement, the standards that are appropriate, what you do to
protect privacy vary at each of these levels. That is the first piece of the
This is a systematic way of putting all this together that we described in
the text the detail, but it builds up from the bottom. If we could come up with
a framework for clarifying the different dimensions of the continuum so that
you could actually see what the tradeoffs are of tracking at various levels.
You could optimize in a systematic disciplined way measurement across levels.
And then you could assess the gap. If we had the framework and we knew what we
had in the framework, we would have a way of detecting the gap between the
current data sources and what we need to have a full complement of the things
we need to drive improvement in health from any number of levels. That would be
Then setting above that you have to have a methods framework. The
stewardship framework is a set of such methods targeted for a particular level
or set of levels in this framework. Could we actually organize the information
and the characteristics of the different types of data sources that exist at
the various levels in the data continuum framework and could we categorize or
assemble the methods, which you could use to repurpose data at various levels?
And then could we see the gaps in the methods? The data continuum framework
let’s use the gap in data sources. This would both make it easy to know which
methods to grab off the toolkit to a particular purpose, but it would also let
us see the gap over time. Again, as I think of NCVHS’ role, it is a newbie. I
think our job is to help the secretary understand the approach that could be
taken to actually tackle this problem at scale and how you could assess where
we were along that trajectory annually or every five years or whatever. That I
think could fit cleanly in our role. We would not actually do all the work. But
if we helped get the framework in place, anybody that did work would actually
be populating something that would land at the right place in the framework or
in the toolkit.
Then set above that the community-focused convergence case studies. The idea
there is that we and other appropriate stakeholders would work with an engaged
community over time, a set of engaged communities to leverage versions 0.0001
of each of these frameworks to in that process either get an example of a
failure or get a success that was a solution set and iterate the framework.
This process would simply — and probably build a component that got dropped
into the framework. You would end up really with a positive spiral, if you
will, that over time would give us the data and methods infrastructure to drive
improvement of health at any level and to understand what you need to do to
coordinate amongst the various levels amongst the people in it.
In our discussion in the population health subcommittee and in the little
bit of reading I have been able to get done as we have worked through this
since the last meeting, I cannot find that anybody has actually made the case
for doing what we just described. I find very useful and helpful reports. The
IOM Primary Care to Public Health Linkage Report that Larry was part of — if
you read through that, each section has a little block on data.
As you look at the IOM Accountability and Measurement Report, it is awesome.
It gets at the need for data to be actionable. It actually does not get at this
idea. Unless somebody knows differently, I think actually the first thing we
would need to do is back up a second and formally make the case, not
necessarily in too much detail, but make the case. I think it would obviously
start with a literature review. If we could find somebody who has done this, we
do not want to do the work. If it has not been done, then I think we have to
make a formal effort to identify the opportunity of the leverage in approaching
measurement with this kind of multi-level and probably access framework. What
are the opportunities?
It is also going to be important. There are in fact distinctions in the
levels and in the disciplines and so forth that have evolved over time that are
terribly important to retain. As we think about how to put this together, it
would be useful to get those out on the table. They are clearly going to be at
least high-level challenges that could guide further works around both data and
methods and then privacy and standards. If we could get something down, then we
would want public comment and then a full report. I would think that would be
one thing we could do.
To be honest with you, this is a 5 to 20-year effort. I said it in the
report. It is three to five. Larry says five and Bruce got it down to a
two-year step. Realistically, we are talking about something that big. On the
other hand, it can have concrete valuable deliverables each year that will in
fact begin to change the trajectory if we go this way. We can actually frame it
as whatever length we want to be engaged in it so we can keep it down to two to
three years if that is what people want to do.
My guess is realistically given our bandwidth if we really wanted to make
sure we got the case made in a way that it was formally done and everybody
viewed that is the anchor going forward that would be the big task for 2014.
In that process, I think we could iterate the framework. I think it would be
— it is in the written thing. If we took something, I put obesity. I do not
care what it is. It needs to be something that is seen as important from each
of the convergence perspectives. It cannot be something that can be viewed as
being primarily in one of those zones. Then you could assemble an initial — I
think it actually might be useful to get one multiple level view and maybe one
other access. If you simply get a data set that dropped into each of those
cells that would let us begin to see what it looked like, this would become
much less abstract. That level of work might be some subset of us could do just
because it is just a straw person to make the thing less abstract. Maybe there
was a work group around the data continuum, another one around the methods.
That would I think get us to where we might have an organizing framework that
would actually help us advance the community example and go ahead with at least
the planning of a community example and maybe get those things done.
My guess is that if we are not blown out of the water in 2015, if we do not
prove to ourselves this is a rabbit hole and we do not want to go down it then
I think you probably have one if we want to do it in one year or two additional
reports around that really flush out the data continuum and flush out the
methods. I think those are distinct reports whether they can be done in one
year or whether it takes two I do not know and you can start additional
community studies and the thing just begins to spiral. That is the high-level
DR. COHEN: Just to finish off, what we tried to do in the work plan table
that is not complete is try to summarize the steps that Bill just laid out. The
first one is actually we need to decide as a population subcommittee there is
stuff left over from 2013 we need to complete. That includes talking with the
data council and it seems that is actually more important now given what Jim
had to say about what their focus is, which seems very similar to what we want
We haven’t really thought about a letter to the secretary summarizing the
roundtable and what we have learned from our initial investigation as a
community, as a learning system. I would actually like to talk to the executive
team to see whether that makes sense at this point in time.
But the items on Bill’s trajectory map into these four streams here. The
first one is the discussion and perhaps the literature review to really make
the case for the convergence at these levels of population health, mental
health, and clinical data. And then try to develop perhaps using obesity as a
use case to play out in less abstract terms what evolved from the framework,
advance the framework, and reiterate. This is what we see. Incredibly ambitious
for one year. After I think today and tomorrow, we will have a better idea of
how much we can really do.
DR. GREEN: Terrific. Let’s take some clarifying comments here. Bill, that
trajectory slide up there reminds me of those bar graphs that just show you the
top edge. They do not show you the left hand scale. This is like you are like
61, 62, and 63 is another way to look at that slide, which sort of calms me
down when I realize that.
MS. MILAM: This is really exciting. When I think about all of your slides
sort of wrapped up into one, it sounds like you are going to have different
axes of data each with different data sets attached to assist you in
understanding whatever the problem is. When I think about the data features
that make up the data set, they fall into probably three pots for me from a
privacy standpoint. One would be direct identifiers like name and address and
social security number. One would be indirect identifiers like any dates and
geographies. It could be date of admission or it could be something beyond
street level, county level. And then I think of your data features that have no
privacy impact at all.
As you look at the different data sets that you need to answer these
questions, it might be helpful to develop some sort of risk category based on
the three different pots of data. But then you also mentioned a need to link
these data sets together and you do that by using direct identifiers. While you
generally do not need your direct identifiers to do a lot of the work that you
will be doing with the data set, you need them for linkage. It is interesting
to see how why you might not ordinarily need to capture that level of
granularity and identifiers to normally address the problem. For linkage, you
will. From a privacy standpoint, we need to think about how do we assess risk
based on the different data needed at these different axes and then what do you
do. What controls and governance is necessary as you move along your risk
DR. COHEN: Can I take a first crack at trying to respond just briefly. I do
not know whether Bill was using linkage in the formal sense of linking
individual records or linking conceptually with the notion of a community. We
could build up from BMIs taken from all the health care providers or we could
do surveys, use the BRFSS survey on perceptions of healthy weight or data from
other sources. I do not know that we are necessarily talking about individual
record linkage as opposed to linkage of the different data sets conceptually to
address a problem.
MS. MILAM: With the mosaic effect, which is a type of linkage even when you
DR. STEAD: Let me make a couple of comments and see if they are useful. One
of my goals is if we can get this into frameworks, then we can actually keep
the various data sets separate. That is a key enabling capability to then in a
targeted way be able to handle all aspects of stewardship. If I have one
access, which is if you will, the complete set of geographic stuff from this is
an address, this is the census track. You roll your way on up. If that is
actually a separate stack that is not in fact retained in a data set that has
other things in it then you have the question. Under what circumstances can I
include the geographic location of an individual in a repurposing thing that
would allow linkage to that stack? The business of decomposing this into a
framework instead of pulling it all together is a key enabling principle.
I think the other thing that is clear is that as you move up levels, you
actually have to make the representation more abstract. The example that I
talked to people that they seem to just get is a weather example. The
population view of weather is a satellite view. It shows you roughly where a
front is and roughly what its nature is. Doppler view is inside the storm
showing you wind patterns and precipitation rates. It is in a way sort of like
a community data set.
If you have a rain gauge that shows you what is happening in a
four-square-inch area that is the individual. Now if I put rain gauges across
the United States every four inches, I actually cannot calculate the satellite
view. It is a different form of abstraction. If the satellite view is empty and
the radar screen is empty and my rain gauge is filling up then I had better
look for a broken water pipe. They relate to one another. If they are not
aligned, then that is a very robust piece of information. And yet the very
process of abstracting it done properly should de-identify it and it should
truly anonymize it.
If one of your methods is that you have the statistical expertise to verify
as a repurpose assembly has been done that it meets whatever re-identification
risk level you want it to meet then you are okay. Now if we are actually going
to solve these problems, we have to get at those kind of methods and get them
out there so people actually can understand when they invoke a need to do it. I
do not know if either of those things helps.
DR. GREEN: We are going to cover everybody who has their tent up now and go
to lunch. I do not have it exactly it right, but I am pretty sure Vickie was up
DR. MAYS: Thank you. I like this notion of having a framework because I
think it helps us to try and pull it together. It is too bad that Jim and Susan
Queen are not here because this is where I think there really has to be before
you even start this discussion with the data council. And the reason is —
MS. GREENBERG: Can I just note that the reason they are not here is because
the data council meeting. We have to make sure we do not do that again.
DR. MAYS: I was asking about Susan Queen. They are having their meeting this
afternoon. But there are several issues in terms of thinking about this from a
systems perspective. The systems perspective as an approach is great. But it
makes assumptions about the quality of the data and the ways in which we can
use the data. As an example, we have to ask the question of who will be
privileged or who will be most represented in this approach and who gets left
As an example, the Office of Women’s Health, I sat on one of their work
groups. They have great difficulty in being able to use federal data to present
data about racial and ethnic minority women. Because what happens in the
federal data sets is when we collect data in the way that we do, the numbers
when you now want to cross race and gender and any other factors gets lost. If
we think about what Jim’s reports have been, it is right now the secretary is
very concerned about who is not there and who is not being represented and the
things that we have to do to make sure that they are into the data sets.
I think what we have to do is then interrogate this. I mean that from a data
point. We are in a federal building so I have to be careful about these words.
That we have to analyze this in a way in which what we attempt to do is to make
sure that both our formulas and our approaches and our models allow us to be
able to make sure that these models will work for everyone equally so that we
have equity in terms of the recommendations. I am going to tell you. That is
not easy. I am trained as a health services researcher.
Sometimes when we do the systems approaches, we have to come back and say do
we have the distribution and the representation to know that the direction that
we are going to meet is going to capture the actual thing we are trying to do,
which people with bad health outcomes, worse health outcomes, et cetera. I
think there is some preliminary work to think about. It is almost like
preparing the data first before you move ahead to see whom it is that your
comments are really going to relate to.
DR. GREEN: I think Michael was up next and then Justine.
DR. FITZMAURICE: I, too, am excited about the framework that Bill presented.
When I think about this, I think about this morning I got up and said do I wear
my leather bottom shoes or my rubber bottom shoes. I pulled out my PDA and 0
percent chance of rain today. All the time schedules. That was an individual
decision I make. Shoe manufacturers will have to decide where the rain is, how
many leather, how many rubber-soled shoes they send so a matter of resource
allocation. They need the higher level to know where in the country are they
most likely to sell most of those kinds of shoes. As you go down from the
individual up to the larger level, you get a lot of different decisions that
have to be made.
For me, this whole framework is based on what decisions do we have to make
at the community level. Behind that, it is what standards for data do. We need
to advocate in these case studies. Then are they based on meaningful use
vocabularies and code sets, claims data, other things that might be NLMs, ULMs.
What are the community public health questions is dominant in my thinking about
this framework? How do we get the answers? What do we need to get the answers?
Then as I look at the trajectory, I see probably in 2017 we need to have
pilots for this. We need to find out what the glitches are working within this
framework and how does it intersect with these market places, with these
accountable care organizations. I think it intersects probably very well with
And then finally when you get up to 2017, who should fund the pilot projects
and who should do the evaluations. If that is putting the cart before the
horse, it is trying to see what is our end game and what do we have to do to
prepare the secretary to understand this framework and to judge whether it is a
good idea or a bad idea.
DR. CARR: I did not notice that the work group was on the agenda. I do not
want to take up time now. There is remarkable convergence about the plan of the
work group on creating the framework.
DR. GREEN: It is unnoticeable, but you are on the agenda. To be blunt, I
thought that we would do really well hear from the three committees because it
is going to trigger a bunch of stuff. We would get to you after lunch.
DR. CORNELIUS: We are having a very wonderful discussion here. I really like
the idea of thinking about a framework. As I hear the conversations, there are
a couple of things I would like to put out. One is just the idea conceptually
about community and really to put forth the idea of — this goes into the
sociology literature. Thinking about a community as a thing of its own kind
that a community however we define it has its own life and the whole issue
about our methodology and measurement is really tied into understanding that as
an issue. In measurement, we do not talk about the problem of ecological
fallacy, that is, being careful not to take individual or payer data or family
data and make the assumptions about community and vice versa. Our first
challenge is really working through. How do we really embrace what that issue
about community is?
The second thing is in my mind as I was playing out the conversation, I
thought about a continuum where on the left side we have our definition of the
community however we are measuring that. We have indicators that really — the
indicators are community indicators. As I was watching the conceptual charts, I
kept saying in this case we have to put the word community inside at the front
of each of these phrases so that we are always thinking about community. And
then on the right side let’s for the moment thinking quantitative. We are
thinking about what are the results. Is it community well being? Let’s just say
community well being as the outcome.
In essence, we are not just thinking about the idea that a community has its
own life. We are thinking what is driving this is what — community
sustainability is another example. What is driving it is some benefit to the
Then one last thing. You noticed I kind of talked this from a quantitative
point of view. But qualitative we are also thinking about when we say
contextual. That is to say that some of these discussions or — photo voice is
a great example that the experience of communities are reflective not just in
these little indicators, but what makes a community a thing that we think about
simply because how the community speaks of it. I think this is really wonderful
stuff we are dealing with. And the framework discussion is going to be
MS. KLOSS: I have to go to lunch and really mull all this over. But a
question, as you are thinking about this, I am sure you are thinking about this
as having potential to rationalize priority setting. It does seem like in the
spirit of convergence. If this were beginning to be framed, it would be the
basis for road mapping standards and other advancements because you would have
identified gaps or opportunities that weren’t now.
I just want to clarify. We are not seeing this in the community health data
use context only I assume. This is truly convergence that then begins to
rationalize the work across the committee as a whole and more broadly. Am I
MS. GREENBERG: I think making that comment, which I think Bill and Bruce
agreed with shows how short sighted I was to say that your view was narrow. I
would agree. There is absolutely nothing narrow about your thinking. It is just
that as the executive secretary for 14 more days or something, I cannot accept
a new mission or charge of the committee, which is that the way you described
it, but being the charge of the committee. If I understood it better, I could
probably. We will have our own little joke about that.
I do want to say what I said on the last call in which we discussed this,
which is I would say this discussion and this potential focus for the
committee, which I do not pretend to completely understand even how it will
play out. I think people have raised some really interesting devil in the
details type things. It is probably more than anything else the one thing that
makes me regret I am retiring. That is how really exciting I think it is and I
am sitting here thinking how it just has the potential to take that information
for health report that this committee did in 2000 or 2001, which started to
make the case, but to really make the case.
My frustration continues in every venue that I find myself it seems that
people love those concentric circles and then they just go for the health care
one. Of course, that is where the money is. I do not in any way diminish the
importance of — I know I have said this many times, but health care. But we do
know that it is actually just looked at by itself is not the main influence on
health. That is why I loved your slide. I do not know which slide it was, but
it is on page 12 when you list all these contextual factors, et cetera,
environmental factors, which in true primary care public health linkage would
be of interest to the clinical environment as well.
I am working on an advisor or comment on a report right now. I won’t say
what it is. But I keep having to bring population health back into it because
it just keeps slipping off the table. But that is because even though we did
those concentric circles and we made the case in that report, we did not go
these next steps, which is really what you were talking about, which I think I
agree. It cannot be done in a year. It cannot be done in five years, but it can
start being done.
I think without doing that in a really rigorous way and through some of what
you have described and again you are very humble, Bill, because you absolutely
are right and yet you are willing to accept that one approach or another might
not be the — you have an open mind obviously, of a researcher — is the only
way we are going to get anywhere because with this convergence thing because
all these other things just keep falling off the table. And even yesterday, we
had a really interesting meeting on public health data standards, which
sometimes we might get a chance to hear about from you other than having you
just advance his slides. But now that I understand your activities are really
part of his too then it is good that you got involved. It is all connected.
Somebody suggested, it was about the public health and population health.
And public health and population health are really different things, but they
converge. That is another discussion. It was about that continuum and the silos
in public health and that maybe you keep integrating the silos until you just
get to public health and then maybe you just integrate public health into
health care. I am going no, but I did not say that. You made that point. What
are the distinctions and why are they important and who should be doing what?
I really feel that this is not only important and exciting and has a lot of
potential and I think the real challenge will be to figure out how to staff it
and support it and resource it because it is ambitious. It is feasible.
But I also think it just completely — you can draw a line probably back to
the 1949, but I will just go back to 2000. The information for health and the
21st century vision for health statistics. Along with Susan Kanaan, the
committee historian, really makes me feel very positive.
MS. JACKSON: Sorry. I just thought it was important that someone who can and
look like staff maybe a staff want to be was at the table to help understand
and interpret and realize the importance of staffing this ambitious endeavor.
No one like Marjorie to connect the dots to 2000 or even beyond. I am getting a
sense from the last meeting and yesterday’s meeting and today that we are
feeling it. We may not be able to in my case really understand especially as
you got to your last trajectory. You had me up to that. I am feeling the sense
of the themes coming together and the work products of the committee doing a
consensus with the convergence. And what Lee was saying about the ecology of a
community and Vickie’s comments about preparing the secretary. So much it is
just happening right here right now. I just put in the importance of bringing
your staff along with you as we prepare in the subcommittee sessions today and
ongoing with the working group material is all really feeding into this. So
far, this has been a great beginning of the strategic session for the full
DR. GREEN: Thank you, Debbie. It may not be apparent to you, but we are
right on schedule. Just look at the published agenda. We are going to start at
1:45, a hard start. We will hear from Charlie then. That is what we will do
first. And then where is says summary comments put standards and work group.
Where it says adjourn plenary, just forget that. What we will do is we will get
to 3 o’clock and we will then adjourn the full committee. We will commence the
subcommittee work with the Subcommittee on Population Health with Drs. Cohen
and Stead at three. And then we will follow the agenda for the rest of the day.
Aim for 1:40 or so so we can really start at 1:45. Forgive me for thinking
like a clinician. It would be a really good time to eat light so that you have
blood in your brain instead of your gut when you come back because we are going
to keep going.
(Whereupon, a luncheon recess was taken.)
A F T E R N O O N S E S S I O N
DR. GREEN: Welcome back. We are fortune again to be able to hear from the
NCHS acting director, Charlie Rothwell, and he is going to give us an update
about the agency.
MR. ROTHWELL: Sorry to get you away from lunch. What can I say? First of
all, we are all going to miss Marjorie. There is no replacing her, not just
with your committee, but a variety of other activities that she has been
involved in, including really leading the ICD activities of the nation both on
morbidity and mortality, her work and her staff’s work on data standards, and
just her work as a senior member of NCHS and not being afraid to give her
opinions. That is really important.
I never realized how important it is until you get into a position where you
realize you really do not know everything. You really do need to be dependent
upon other people to give you counter views to what you think is the truth.
Marjorie is not ashamed to do that. I am better for it.
Donna will be acting in her place during a period of time I hope. Debbie is
going to be acting in her place with the committee here. And then we will be
hopefully filling positions, which has not been an easy process in the last
several months. I am hoping that we will be fully staffed when we are allowed
to be fully staffed. We have the paperwork ready. We just cannot seem to push
I was asked a question before we started that I hear you are going to be
moving. Yes, we are. We do not know exactly where and we are not sure exactly
when, but it will be within the next year. It will be much smaller space. We
will not have a facility like this. We may not have an exercise room. We may
not have a nurse’s quarters. We may not have a variety of things and we will
not have offices for the most part. We are going to be moving into about 60
percent of the space that we have now, maybe 55 percent of the space that we
have now. It is going to be a difficult process with the staff from a morale
From a morale perspective, I think we came out of the furlough very good. I
think people were ready to go back to work. I know I was one of the few that
stayed here during the furlough time. I was really happy to see people coming
back and being able to talk to somebody. You can only clean out your office so
much and water people’s plants and those types of things because after a while
you find out how little you can do as director without the people who really do
I understand that we will know who will be selected for being the director
of NCHS probably this week. I expect an announcement to be made.
Our budget issue. We are just like everybody else. There is no budget. There
is a continuing resolution and in fact, I believe the best thing for NCHS is
that the continuing resolution continues through the remainder of the year and
that would of course mean sequestration. Last year I think I told you all that
we were one of the fortunate ones that were not hit by sequestration just
because of how we are funded. Our evaluation dollars are already sequestered,
if you will, before they come to us. In other words, they were already tapped
before they come to us. They could not tap it twice although they would have
liked to. If that is the case then in fact we will be flat budgeted again,
which is a very good thing.
One of the problems with the furlough is that we had a fairly full slate of
reports that were going to come out. Those had been moved back. It means that
in December we are probably going to come out with maybe 10 to 12 different
reports, many of them from NHANES, some from HIS, some vitals. Not that we are
after press, but it is always nice to have some media attention. When you have
more of these reports coming out, two a day or something of that nature or two
a week or three a week, they have to pick and choose what they are going to
select. We are catching up.
We also had issues with doing work for the states relative to doing cause of
death coding. We are having to catch up there. That has been a problem that we
will overcome on the furlough. It will take a while to get us back.
We are fairly well staffed at the moment. I think we have about 25 FTEs or
so. We have around 520 some FTEs total. We are about 25 down. It is always the
most critical ones or at least that is what I am told. There are some critical
ones that we need to fill including Marjorie’s position and several others.
I believe if people are true to their word, NCHS has not had a deputy
director in many years nor have we had a head of the office of basically plans
and evaluation, our legislative end of things as well. I think those two
positions are now going to be approved to be filled. I am hopeful there. That
is one of the things I realize when I became acting director is that the Office
of Center Director was very thin. It should not be fat, but it should be able
to be responsive and provide leadership to the rest of the center in a variety
of avenues. One person cannot do that. I think that will be a positive thing
I was looking at the agenda. I am sorry I was not here yesterday for the
standards conversation. It got me thinking about — I have been pulled out of
my old job and into this and where NCHS is going and what are the changes that
I see coming to us. I think those changes might be things that you will be
There was always a difference between how we do business and what our
business is within NCHS than with CDC. That is not to say one is better than
the other. They were just different. But all of a sudden, what we are seeing
here in NCHS is that we are doing surveys like HIS where we are doing early
releases. Those surveys now not only have early releases, but they are just not
national surveys. They provide data at the state level at this point. Some
states are sending us vitals within four days of the event. We have changed our
system such that we can use that data on a regular basis instead of just
storing it for a year or a year and a half and then doing annual reports.
All of a sudden, I think our surveys and our register systems are going to
be surveillance systems. I do not think that is a negative thing. We are going
to have to figure out how we do that and how we release such information.
Normally what we do is when we release reports, we also release the data set
associated with it. We will always have to do without the final file, but I am
not sure what we will do relative to these intermediate products that we come
out with. I do not think the way we used to it is reasons for not going ahead
and becoming more responsive to public health surveillance needs whether it is
CDC, whether it is FDA, whomever it might be if the data sets are used. I think
that is extremely important.
The other is that if you take a look at our website, it is not shown very
well. But I think one of the most important things we are doing right now are
data linkages. When you look at the linkage of our national death index with
our surveys and then you take a look at the surveys that are being linked to
CMS data, SSA data, end-stage renal disease data, data linkage in my opinion is
really the statement of the sum is much greater than its parts. Those linkage
data sets I think are going to be more and more important to public health and
to health care. I believe that is the way things are going to be going not just
in NCHS, but elsewhere. There is a push.
I think maybe I mentioned this to you the last time I was here by OMB to
make administrative data systems, data sets more accessible to statistical
agencies like us. This would not just be administrative systems within health
and human services for us, but it would be all administrative systems. We are
going to have to look at how one would use these data, how to use them
appropriately, what the quality of them is, what you can and cannot do with
them and how you might link them together. I think this is going to be a huge
issue for us. It is sort of like the creation of big data. That gets into
standards. How are you going to link things if you do not have appropriate
standards and you do not know what you have? I think standards are going to be
more important than ever for us to be able to utilize this information
I think that NCHS is going to find itself doing more than just analyzing its
data. It is going to be analyzing its data associated with a variety of other
data sets from a variety of other agencies and with all of the pitfalls that
may entail. But that means that we are going to have to collaborate a lot
better. We collaborate now, but we collaborate by getting money from other
organizations. About 30 percent of our budget comes from other organizations in
order to collect the data that they want. And then we go ahead and we publish
that information and provide it back to them. We do joint reports with them.
NHANES is very good at that. I do not think we really plan for it. It is sort
of catch as catch can.
Senior staff had a meeting with the deputy administrator of CMS a couple of
days ago. I really do think that one of the things that came out is that we
need to have not an analytic plan, but an analytic strategy between us. How do
we use these data sets appropriately? It is hard enough to figure out with your
own data sets what to do. I think our staff is going to have to get together at
the beginning instead of after the data sets are created and in figuring out
what they are going to do. Have a plan for what we are going to be doing with
this information. If not, then the worse thing is going to happen is that that
data set is just going to sit, not be utilized, and perhaps some questions that
could have been answered won’t be answered because we did not take the time to
look at them.
I really do think that issues of data linkage of something that even if you
do not want to hear about it will come to your committee at various times and
how one analyzes data that is linked together that are of varying qualities and
what do you make of it and issues of standards. Standards have always been a
difficult thing for me. We have so many different types of committees that are
involved in standards and the standards process is difficult to follow. In the
end, I think sometimes the standards process scares away development of
standards or at least it might cause people to go their own way. Somehow, that
is going to have to change.
I think I may have mentioned this to you the last time I talked with you.
One of my greatest fears with electronic medical record or health record or
whatever you want to call it is with those standards that are supposed to be
within it really be followed up on and will we be getting data that we can
really put together in any meaningful way or are we going to have a cacophony
of different data sets that we are going to scratch our head with over many
years trying to figure out how to paste it together while health care delivery
continues on as it is. I really think that that is to me a real potential red
flag out there and one that you all ought to think about in the future and that
is are we really collecting a core data set out there in the field that could
be used for a variety of purposes for health care as well as public health. We
have all this potential for data access, but it does not do any good if you
cannot piece it together in some sort of cohesive whole to make decisions on.
That is some of my off the cuff thoughts.
DR. GREEN: Did Bill Stead pay you to say that?
MR. ROTHWELL: No.
PARTICIPANT: Were you listening to the session before?
DR. GREEN: That was very nice. Any questions for Charlie?
DR. FITZMAURICE: I have known Charlie for a long time and this was one of
the best reports I have ever heard the acting head of an agency give because
there are a lot of lessons to be learned that Charlie has learned over the
course of years and over the course of the past month or two or three that he
has been acting head. He has always been steady. He has always delivered. I
just want to say thank you, Charlie.
DR. GREEN: I think I can say that for everybody. We feel like you were
terrific and you showed up and you participated and you looked after us and we
are very grateful.
MR. ROTHWELL: Thank you. Government service, I think, should be a calling. I
am not saying that there cannot be callings everywhere in society. But I have
always felt that it is. I think it is a terrific responsibility. I always think
on when I am doing my tax how many people have had to pay out of their salary
to pay for mine. A lot of people had to put money away. What am I doing for
that and what are the rest of us doing for it? It is something to take
seriously. I think this agency what I like about it is that we are a neutral
body trying to inform as we say the debate. I sort of like that.
What I found over the years is that without saying what my political
leanings are that some of the administrations which I probably did not vote for
were actually some of the best ones to work with and vice versa. It has always
been an interesting process in thinking about the next administration is coming
in. What is going to happen and what are these folks going to be like and what
the agenda is going to be and how you take it on? Many times, it is not what
That is another thing, which I find that is in the paper all the time now is
it is them or us. It is us. We just have to decide how us is going to get
along. That is the part of governance. I think our job is to inform the us,
about how they might govern. I just think that is a terrific thing to be
involved in and I think most of my staff do as well.
DR. GREEN: Thank you very much, Charlie. You are welcome to stay as long as
MS. GREENBERG: We have got a lot more than I expected, which was great. In
case you missed it, what Charlie came to tell you was that I just want to be
clear about it because particularly if you were not in the room, it really
might have passed you by. I am the head of an office called the Classifications
and Public Health and Public Health Data Standards Staff. We have three teams:
the National Committee, an informatics team, and the classifications team.
Donna Pickett who is the team leader for classifications and really the US
leader on morbidity classification will be the acting director of that office.
And then they will be recruiting to fill the office. While she is acting
director of the office, she will also be the acting head of the WHO
collaborating center for North America, which she has been one of the lead
Debbie Jackson will be the acting executive secretary until that position is
filled probably as part of one of these positions in the Office of the
Secretary, which he referred — I mean the Office of the Center Director, which
he referred. That is going to be some time.
I personally am very gratified by that. These are people obvious — well, I
guess I hired both of them. Michelle Williamson whom I also hired will continue
as the team leader for informatics and Katherine Jones will continue as the
team leader for the National Committee. I guess I hired all those people. I
obviously think highly of all of them. I think that is leaving you in very good
hands. Debbie says she promised me she will come to the table tomorrow. She is
still absorbing some of this. As I said to her, that is fine. I said I am
executive secretary until 11:59 on November 30. All these positions obviously
are hard to give up. It will be a very smooth transition I think. Debbie and I
and Katherine have worked with all of you. Michelle will continue. Donna will
continue to work with you and others throughout NCHS and throughout the
department. I just wanted to make sure that everybody got that because it was
Charlie, I will say for the record, has been a terrific acting director. He
has been a pleasure to work with. I have learned a lot from him and I have
known him a long time in this new position. I was interested certainly to hear
his — he has been saying for a long time that we are going to hear very soon
about the new director of NCHS, but it sounded like it is going to be even
sooner. I am confident. Jim, who has to be at the data council, knows all this
and supportive of it. We are both confident that the committee will continue to
thrive and will be well supported. I just wanted to get all that on the record.
DR. FRANCIS: Just a quick question. Is there anything we could or should do
about the move? I was very sad to hear him say the concerns about employee
morale in light of the real importance of the recognition of the work people
MS. GREENBERG: This is government-wide. People are going into open space. I
am told there are new and good ways of doing this. Fortunately, I won’t have to
find out and I feel guilty about that. I feel guilty about it, but happy.
I think that they will just have to work out ways. I do not how it will
affect productivity, how it will affect all these conference calls that people
are always having. In addition to putting everybody, taking everybody out of
office except possibly the managers, there will be less space all around to
meet. I do not really know how it is going to work out. They are working on it.
One issue will be if we do not have an auditorium, it will have an impact
actually on NCVHS. It will have an impact on NCHS, but it will have an impact
on NCVHS because you may have noticed we have been meeting here for the last
year or two because we can no longer meet in hotels. Basically, other agencies
for which you are not the executive committee or the federal advisory committee
are not going to give us their space. We have looked into that. We have tried
to rent from other agencies. I have heard conversations that advisory
committees will just meet by phone. I think you have to push back against that
very strongly. I certainly have. There is no rule on the table about that right
now. We do a lot by phone. We know that. But I cannot imagine. The
conversations we had before lunch. Are we going to have that on the phone? No.
I do not think so. Not exclusively. I do not think you can do anything about
the NCHS move. I think the Board of Scientific Counselors probably more
directly will have to see what impact it has on the work. Thank you for caring.
It does concern me.
DR. GREEN: We also cannot have the conversation we had at lunch on the
Onto standards. Ob, I am looking forward to this.
MR. SOONTHORNSIMA: Thank you very much. As I listen to my colleagues talk
about their strategic plan and where they see the subcommittees going, I keep
thinking convergence is alive and well and is definitely accelerating among our
group especially after a day yesterday of listening to various stakeholders
yesterday for those of you who were here, very diverse group. Also, lots of
challenges and opportunities and Linda said it best. Here is another
opportunity for a roadmap.
But with that said, before I begin, I do want to thank our staff. Marjorie,
you brought up we are in good hands. You are absolutely correct. I want to
acknowledge Kamahanahokulani who has been working with our committee now for
six, seven, eight months now. And of course, Michelle Williamson, who is not
here today, but she was very instrumental.
MS. GREENBERG: She is on the phone I think.
MR. SOONTHORNSIMA: She is. Fantastic. Very instrumental in putting together
the roundtable yesterday inviting the various stakeholders to the table
literally as the government was shutting down a few weeks ago, but yet got that
group together and what a meeting we had yesterday and we will talk about that
in a minute.
And of course, Terry Deutsch, who is here today. Terry is helping us
drafting. This is where the committee members no longer have to write these
things ourselves. She is helping us draft the HIPAA report. Thank you to our
staff who has been terrific.
I also want to acknowledge our subcommittee members. We have been prolific
since June. We literally have been meeting weekly on the phone working through
and I will get to the work project in a second. But I just want to acknowledge
how much work our subcommittee and our chair who joins us. And of course,
Marjorie, has been on every phone. The only break I would like to say was
during the furlough, the shutdown. That is the only break we got I think.
With that said, I am not going to take you through all the slides because
the deck is provided to you. But I do want to take us through and I do welcome
my colleagues to chime in at any time. By the way, Walter, as you know, is not
here today. He has been called to an executive meeting in California and could
not be here today. But that is another person we need to thank because Walter
has been championing and putting together a lot of slides that we are about to
go through. He will be on the call tomorrow morning.
I want to summarize by saying there are lots of busy work. However, if you
look at the work product over the past few months, there really are three key
areas that I would like to talk about. One is eHealth vision and roadmap that
we will get to really quickly. And then how that dovetails real well with our
public health hearing yesterday and talk about convergence. There are some
opportunities, certainly common issues that we will go through. And lastly,
there is some technical work that we do and I am not going to walk through that
because you can see it. We are going to have a busy year next year too in terms
of following up on admin simplification, ACA provisions, and so forth, and
letters we have to write. You heard about review committee. Those are tactical,
but very important work. But what we see coming out of eHealth vision roadmap
and public health data standards discussion yesterday is something that can be
much more strategic for us because they will shape our thinking and align a lot
of things that were said today with the data, public health, privacy, security,
and so forth.
With that said, let me jump right to our eHealth vision and roadmap. I am
not going to talk about the purpose of the roundtable. This, you may recall,
was back in June of this year. But I do want to jump right into some of the
common themes. You may recall. We had a room close to 30 people or so. It was
not a testimony. It was really a brainstorming session roundtable discussion.
There were some common themes and pain points that we flushed out of 30 pages
or so of notes. We summarized them in the following areas: patients,
government, provider-payer and actors in the industry, and lastly standards and
Around patients, awareness and ownership of information, ownership of their
rights, access, and navigation challenge. In other words, navigation across the
health care engaging in health care is a major challenge for patients.
For government and the state, legislative, regulatory requirements and the
siloed initiatives clearly were a major issue for every stakeholder at the
table. And then of course at the state level, the rules are applied differently
too. Different set of requirements.
From the provider-payer’s perspective and you kind of heard that throughout
this morning from CMS, size, scale, capacity, complexity, priority, cost. These
are significant issues in terms of implementing all the mandates, implementing
all the initiatives that have been going on for so many years now and more to
Also, there is significant disparity around not only their ability, but
their capacity, not having sufficient means to implement especially for smaller
providers and payers.
Lastly, we all talked about the ROI. How can you gain the benefits of all
these initiatives and operating rules and standards? There have been
significant challenges around adoption as well. We have been implementing a
lot. The industry has not really had much time to leverage those capabilities.
With that, we call through feedback and notes and we came up with the
following themes: patients and consumer focus as a theme. This is not just the
subcommittee. It is the stakeholders around the table. Sound policy and
regulatory harmonization. Flexibility, agility to embrace change with a sense
of urgency. Disparity of means to execute and adopt. Useful data and effective
stewardship. And lastly, effective evolution with perspectives on short and
long-term horizon. Those are the key themes we lifted from multitude of
comments and feedback.
We asked the group to present what are some of the eHealth vision from their
perspective. You can read this on your own. There are a couple of pages here.
This is meant to be a summary because the feedback has been a lot more multiple
pages. But having consolidated view, having consumer centric access to
information, real time, secure. I am not going to go through in details because
I do want to get to the guiding principles.
These are some of the individual comments. Care coordination, effective
quality measurement. When you read through this on your own, you can look at —
these are the visions of the participants. Some of us contribute to this as
well. We have yet to come up with our own version of eHealth for the NCVHS
subcommittee. We have not done that yet. This is just a summary of disparate
visions we heard. You can begin to see that a lot of these things have some
common not themes, but they are aligned quite well to those themes that we
talked about earlier.
Here are the guiding principles. You may recall the six circles: sound
policy, regulatory harmonization, flexibility and agility to embrace, disparity
of means. Here are some of our early guiding principles as a group as a
subcommittee. The first one, eHealth policies facilitate evolutional practical
and pragmatic changes in the industry based on clearly defined concepts,
objectives, and measurable results.
Second, eHealth policies facilitate transformative changes that have clearly
stated visions, goals, clearly defined current and future states, what will be
embraced versus what will be abandoned. Let me pause right there. The first two
points. If Bill Scanlon was here, he would echo this. One of our biggest
challenges is all these changes that the industry is going through are somewhat
evolutionary. You take one step. You implement 5010 and then ICD-10. These are
critical changes, but there are some things we have to think about that may be
much more transformative such as payment reform that we can anticipate. But
when you have a transformative change, let’s try to understand what that vision
really is and clearly define and I do not mean to repeat the words here, but
that is what we meant. What are going to be drastically different? We use words
like abandon. What are the things that are going to be abandoned? What are the
things that will be embraced? That is the distinction there between
transformative and evolutionary changes.
Third, major changes are optimized and aligned to minimize administrative
burden to industry and maximize outcomes. For example, stakeholders and actors
are clearly defined. Impacts are anticipated and articulated. Conflicting and
competing policies identified, reconciled, and resolved. These are principles.
Fourth, eHealth changes clearly define stakeholders. Opportunities and risks
are clearly articulated. eHealth changes deploy practical and pragmatic
approaches and mitigate implementation, adoption risks focusing on
administrative as well as clinical processes to achieve the triple aim.
Lastly, eHealth changes are optimally defined to achieve greater good for
the whole. Forgive me if this is not worded properly. The point here is that we
also have to recognize that not every change may be possible for every entity
or everybody. There may be lots of winners, but there will be some people that
may not be able to make those changes. You cannot make a change that everybody
will embrace and move forward. Those are some of the guiding principles.
These are guiding principles around patient and consumer, effective
evolution, and useful data. eHealth changes facilitate and enable capabilities
that empower consumers with actionable information and engaging health care,
improve provider’s delivery quality and outcomes, optimize cost, reduce waste,
and improve patient safety. eHealth transformation establishes and articulates
a roadmap of short-term, long-term changes, optimize and achieve benefits
The point is we have to recognize that these changes take time. How can you
get some benefits in the short-term or along the way and minimize and avoid
Last point. We also allow some flexibility. We have to think about the
technology advances, anticipate some of the industry advancement such as
payment reform. That is coming down the pike. How do you include some of the
policies’ changes in the industry that may impact our eHealth course roadmap?
eHealth facilitates effective purposeful data exchanges, end users that empower
information health care and informed health care and public health objectives.
Lastly, eHealth uses effective data management and stewardship practices to
gain stakeholders’ confidence and trust.
I am going to pause and get some reaction. These are guiding principles and
this is our early thinking around these six areas. After this, I will ask Linda
to talk about the roadmap. That is another thing we are going to be discussing.
DR. FITZMAURICE: There are an awful lot of principles here. I am used to
seeing principles in terms of eHealth transformation should establish. It is
saying things that people should do. But then when I see bullets underneath
them, it is like can you do all of these things at once. That is why we have
the word optimize because then you can do everything. But what you are doing is
pushing out to a frontier. You still have to make choices along that frontier
when you are optimizing on more than one or two things. I like the principles
and what they say. But I would guess a third to maybe half of them are vision
statements rather than principles. Which ones? That involves a discussion. I am
not sure I could be good enough to do that. I like what I see. I like that you
have pulled together what people are thinking when they do this kind of work.
MR. SOONTHORNSIMA: Excellent point. Your point is vision versus principles.
Separate the two. You are right. Anything else?
If you think about some of the principles that we have here, you can begin
to see how they might be aligned quite well with what you heard earlier in
other subcommittees. Linda, would you take us through the roadmap?
MS. KLOSS: I think as we reported in September, that roundtable conclusion
was just do this roadmap thing. Certainly, the principles tee up where we are
going with this. But we felt the need for some kind of graphical depiction of
this because that was the sense of the group. If we could just see where all
this is heading and look at the interrelationships that would be very helpful.
We took a stab at a graphical depiction and our view is that it needs to help
us sequence and align, take a longer view so that we are not looking at just
the next 24, 36 months. Serve as kind of a shared vision. Try to get it to one
page and communicate priorities and be the basis for some dialogue around this.
We also thought you just cannot put out a standards roadmap or an eHealth
roadmap without building in upfront the evaluation piece. We thought we would
adapt or attempt to adapt something that is known to many people and they use
in their own organizations the balance scorecard, which is a good technique for
looking at goals, objectives, measures, but expanding them beyond the typical
ROI kind of measures to measures that embrace learning and growth process,
improvements, what kind of process do we need to be successful with this.
Really understands and anchors it in the range of stakeholders and tees up
results that we ultimately want. We thought that that would be a technique
actually that could work.
It could be applied at several levels. Each time a new item goes on the
roadmap, it really needs to go through this kind of rigor and thinking upfront.
I think that relates to the discussion we had earlier today about moving
forward with and accounting for disclosures, major change. That seemed to me to
be a roadmapable kind of item where these kinds of issues should be wrestled
And then the next page is just a couple of samples of the — I think we teed
up two varieties. This is just a typical project roadmap, but it does start
putting things on one page. A couple of points that we wanted to bring out.
First of all, if you look at the timeline, we were trying to press this out to
2020. It does not do much good for the industry not to see this out further
than we are perhaps looking at these things now.
We think that a useful roadmap needs to really look at convergence. From
health care administrative simplification, personal health, and population
public health. These dimensions. The four going down the left side. Longer time
frame, multi-dimensional. If you look at the stage up in the upper right, we
need to be looking more holistically at both the development stage, the
effective or implementation stage, and then the evaluation stage. That needs to
be built in up front.
And then the fourth principle here that we were trying to depict was that we
need to be clear on whom all the major stakeholders are and then take a look at
who is being impacted as we tease out the items to be roadmapped. That is one
of the problems we are having now is that the same people are being impacting
by multiple items coming through different streams, but not being looked at
more holistically. This is just a depiction. If we were able to do this
roadmap, we would want to boil it down to one page, but we would want some
process for understanding and evaluating each line on that page. That is as far
we have gotten.
MR. SOONTHORNSIMA: However, one of the things that we also talked about is
continue to update our roadmap because every implementation, every initiative
has a long tail and if we have any delay, there are implications right across
and down to stack. They are all interrelated. We heard about Health Plan ID,
for example. What are the implications of that and how that would be adopted
and so forth? This is one way for us to synthesize all the key changes that are
going on in the industry.
Look at the bottom. I just want to make sure that we call this out.
Population public health. We feel strongly that we have to add that dimension
there as well. This is where convergence, as I was talking about earlier,
across the subcommittee come into play. Perhaps, Bill, this is your framework.
If we can map up some of those initiatives throughout the next three or four
years, maybe this will help synthesize all of our activities, our
recommendations, our advising the secretary and the department.
With that said, I do want to talk very briefly and then I will ask anybody
to chime in for those folks who were participating in yesterday’s public health
forum or roundtable. I would love to get my colleagues’ feedback. This is my
perspective. There are a number of issues and opportunities we heard around
data infrastructure, around resource and funding. That just came up front and
center over and over again, around disparate stakeholders, the jurisdictions.
People use words like silos, but it is really the fragmented nature of public
health. And lastly, adoption and implementation and maintenance of these
whether they are core measures or whether they are use cases and so forth.
Those are just for early thoughts that I heard and I saw. Any other colleagues
like to chime in from yesterday. Those are just four themes so far that we
DR. COHEN: One theme that kind of surprised me was the universal belief that
public health is very far behind the curve in adopting standards compared to
other players and other sectors who have moved forward. I hadn’t really thought
about that context. I still need to consider exactly what that means, but I
thought that was significant.
DR. FRANCIS: I was just going to say I thought one of the themes that came
out very clearly yesterday is exactly what that slide highlights the blanks on
the lower part. As part of a roadmapping question, maybe when we do meaningful
use two and three particularly three, we should be looking at whether there are
a bunch of things we ought to be doing at that same point in time that that
roadmap reveals to us. The question being, for example, whether there should be
any linkages between meaningful three and population or public health. That
came out loud and clear. Just the thought that if we fill in one set of blanks
and ignore the others, we are in trouble.
MS. KLOSS: We did not try to fill this. It was telling because the examples
were not top of at least my mind.
MR. SOONTHORNSIMA: When you go back to some of those themes that we just
talked about or trying to package what we heard yesterday, to your, Leslie,
while this is left blank, it is because we were not sure what to include there
yet. And clearly and this is a quote from Marjorie yesterday. Public health is
bookend. It is really the bookend to the administrative and clinical data
capture. That is close enough. That is why we feel so compelled to make sure
that this is included in here because everything upstream here to your point
feed down here. How can we align our work more effectively and align our
recommendations more effectively to not only take care data, stewardship,
privacy and security, and the data at the community level? Those are themes
that we can do more strategically. Hopefully, a roadmap of this sort could help
facilitate that and provide a visual to the work of the committee.
MS. GREENBERG: One other theme, which is related to the resources theme.
Although there was acknowledged that there are some if not centers of
excellence, people of excellence working in this area and certainly more
involvement than there was 15 years ago. Of course, that is true by many
multiples for the health care side of it, but the workforce needs. And we
talked about that this morning, not even for population health, but just —
frankly, we have them in this room, a lot of the people, and the room was not
even full who are really laboring at the standards development organizations on
standards for population health data and health care data, et cetera, but with
a focus on population health. They were here. They were all great. There are so
few and there are so few opportunities to expand that. And then also most of
them are at the national level or with associations particularly at the local
level and even at the state level, it is really rare for someone to be able to
have the bandwidth or the resources to engage in this work. There is no denying
that. It takes people to do this work and people who have knowledge. That was a
DR. CARR: This very much aligns with how I like to look at things, take the
big picture and put it all together, lump it and split it. Just to be clear,
who is the audience for this exercise and this plan? There are a lot of
obviously many people working in these fields. Is the goal of this exercise to
define what is going on or with the guiding principles? I guess my question is
who is the audience, the customer, and what is the expectation as we execute
these different things, or is it simply to define.
MR. SOONTHORNSIMA: We do have an audience for the vision. Clearly, the
department, HHS, because they are the major stakeholder with lots and lots of
initiatives and mandates that they are required to push out. Clearly, an
audience is us as we shape and inform ourselves, our thinking, and shape our
adjudication, deliberation, and recommendation to the secretary. Clearly, it is
the industry that came together and helped provide this feedback. They are the
ones who are saying we have implementation fatigue. What can we do to do a
better job aligning things? Audience is multi-faceted.
DR. CARR: We will put this forward to the secretary and as work happens, we
will refer to the guiding principles to say here is how we guide ourselves. I
get all the concepts. I am just trying to see how does this all play out.
DR. CHANDERRAJ: I think it is the audience, the providers, or the
communities that are looking for this kind of information to implement their
health care delivery.
MS. GOSS: From a standards subcommittee perspective, Justine, I see this as
a starting point for us to get agreement with our committee members about the
roadmap and our guiding principles that we will use as we move forward and that
this is the first part of the tango so to speak that we need to —
DR. CARR: This is the NCVHS —
MS. GOSS: I think this is a part of the puzzle that we are bringing together
across all the committees.
DR. CARR: There is Minnesota eHealth. There is a national eHealth. There is
a WHO. Many eHealth visions if you just Google that. I am just trying to scope
this. We are talking about this is the work that NCVHS will opine about and
MR. SOONTHORNSIMA: Absolutely. That is one way to frame it. It is not meant
to be all eHealth and all dimensions. These are our agenda.
DR. CARR: Coming to this blinded even being a member of the committee, it is
not as clear. You need a little bit of framing to say we are talking about this
work done by this committee to help inform from the secretary down to the
stakeholders. I think Mike’s point about the guiding principles is good because
some are guiding. Guiding principles should be teed up to guide you at the
decision points and some of it is vision, but I think getting a clearer. We are
putting this forward because the audience is this and we will use it how. It
seems basic, but it would help a little bit in then appreciating the depth and
the richness that is here.
MS. GREENBERG: It isn’t though just to guide the work of the committee, is
it? I understand what you are asking. The industry was not just asking for the
national committee to figure out what it was doing. It is a big task. It is to
work with the department I think and the industry to try to rationalize some of
these and for not what is out there now at least what is going to come later.
Some trains have left the station, but some are still being built. But you two
probably can respond better.
MS. KLOSS: We were fortunate to have seen a draft of the CMS eHealth vision.
That is really why we — and to have had CMS at that meeting and that is why we
adopted that term eHealth. Perhaps that is not as clear. It is certainly a much
But I do think the fundamental goal is to look beyond what the committee is
charged with, which is that administrative simplification cluster and put it up
against the other standards and significant projects that involve and engage
the same group of stakeholders and impact the work of the industry and to look
at that more holistically. I think it is the committee beginning to work on a
more holistic view of the kinds of changes that we need to continue to go
through to make this a seamless system.
DR. CARR: It is the emerging landscape, evolving landscape perhaps that we
are describing. But I am just saying if we are going to give this to the
secretary, there are a lot of other stakeholders under the secretary on
eHealth. It is either a coalition of HHS eHealth stakeholders including ONC and
everybody else who agree on this, which will take a little time as well to get
that agreement, or it is an NCVHS landscape that will be evolving or whatever.
I think it just needs clarity because it could also be off putting to someone
who felt that they should have given input on this. If it is an NCVHS product,
that is fine. If it is thanking all the key stakeholders that were here — that
is fine. I just think you need to seed it somewhere in the continuum.
DR. FITZMAURICE: Don’t you just love working on a committee with Justine.
Justine says I do not understand this at all. I think it is this. I think it is
that. As she goes through her thinking process, it kind of makes us think more
about it and come to the same kind of understanding.
As I looked at this, I looked at the eHealth roadmap balance scorecard,
slide number 36. I am saying, what is it trying to communicate. I do not see
the end result. I see that we are trying to build a vision. We are trying to
satisfy stakeholders. We are trying to have stakeholders participate and then
we are trying to measure the impact of what it is we are doing, but what is it
we are doing? We are building an eHealth vision and strategy.
I go then to the next slide and I thought a lot about this slide since I saw
earlier slides about it. It seems to me that under objectives we have learning
objectives, process, stakeholders, and the results. The results would be did we
identify these objectives correctly for those. Then measures and targets. Do we
measure how much they learned? Do we measure how well the process was adopted?
Did we get all the stakeholders or not that is part of the measure? And then
the results are did we complete the measures and target. Then the final column,
the results column, says did they in fact learn. Did we complete the process
and it is being used? Did we eventually get all the stakeholders or not? I do
not know what the results — cross with the results is. I understand the lights
to tell you how successful we are, but I still do not know what it is we are
trying to achieve.
Then I look at the eHealth roadmap and then I see what we are trying to
achieve is making good cogent recommendations to the secretary on behalf of the
industry, the public, and our best thinking about meaningful use stage two,
meaningful use stage three, et cetera. It becomes clear that this is a study
and a method by which we do our work. If we adopt this as a method by which we
do our work, we will be able to tackle all of these things that are on the
eHealth roadmap. Did I get it right? Am I close? I am asking that as a
MS. GOSS: I think you got it right and I think what we have to do is make
sure we weave it in with Bill Stead’s presentation earlier from population
health and using that four-part methodology or the system to underpinning all
of this and make sure that we address the right governance. We have a very
complex set of domains. We have a diversity of opinions and there is a lot of
stuff we do not know yet as we are trying to gather data, analyze data, and
turn it into knowledge and wisdom. We need a repeatable set of processes and a
roadmap for ourselves to dialogue around, but also then to bring the rest of
the community along.
MR. SOONTHORNSIMA: I do want to continue very briefly to end the
conversation and then open up for more question or comments.
When you think about some of the strategic work that we are trying to align
here, we still have some tactical, but important work such as HIPAA report that
is coming up. What we are thinking and I do not want to go through the detail,
but what we are thinking with the HIPAA report is not only talking about
providing a combination of all activities since the last report around
administrative simplification, but we also want to flesh out some thematic
things of what we have actually been doing over the past couple of years. Some
of these things that were just talked about today like the roadmap, alignment
of issues and opportunities and the crosscutting challenges. For example, it is
up here under health care. ACA. That is a huge set of activities. That is
really what the first one is. Health care reform. There are a lot of
crosscutting issues and opportunities around privacy, security, data framework
that Bill was talking about for public health.
We like the report not only to talk about what we were doing, what we have
been doing around admin simplification, but also what are some new emerging
opportunities that we are seeing and how we can better align across these
areas. That report, I believe — Terry, that is February. That is what we are
It is going to have more of these forward-looking themes in there as well
and a combination of different subcommittee’s input into that beyond just
regular admin simp and challenges and issues.
Are there any other additional comments or inputs? This has been extremely
valuable. Thank you for those comments.
Tomorrow’s activity. We have a subcommittee meeting at 8 o’clock. If you
would like to join us, that is when we are going to focus on the public health
hearing and trying to synthesize what we heard yesterday and try to come up
with some similar reports as we did with the eHealth vision.
DR. GREEN: Thank you, Ob, very much. Let’s keep going here and hear from
Justine about where she thinks the working group is.
DR. CARR: Just to reiterate, the working group has a number of charges in
our specific charge, but three of them. One is review the portfolio of HHS data
resources. And actually, the committee began the work by doing that and
enumerating what are the things and how they could be better. But as we have
evolved, we have looked more at the charges to identify and monitor trends and
capability and traditional and new information dissemination and data access
strategies, developments submitted and technologies including social media and
their application by the data technology innovation community and advise HHS on
opportunities. I will just mention two more. Identify and monitor types of data
and information needed by all participants in the health system with attention
to content, quality, technology, and audience issues. One more. Identify and
study areas of opportunity to improve data access and applications and on
associated privacy, technology and other data policy issues.
We began, as I said, looking at what data already exists and how useful it
is. One question we need to clarify is we have our work group deliberations. We
do not create a work group product. We have representation from HHS and we have
people giving their opinion, but we do not create a report. I will follow up
with you later on whether we should be doing that.
Then also we look at what data does not exist that would be useful. And that
is the work that we are focusing on now.
Just two other areas that we are looking at is what existing data might be
repurposed and what data is minimally required for making community-level
assessments. You may recall that we had talked about looking at how social
media data in a broad definition could enhance the HHS data. Our starting point
was to think about CDC data with flu enhanced by Google, queries about symptoms
of flu. Is that a model? Is that a new kind of way of looking at it getting it
more real term? As we discussed that, we got very energized about the idea of
putting out a request for a solve-a-thon to get others who are undoubtedly
doing this all across the country to come forward with their cool ideas. We
were met with kind of resounding silence. Notably, we did not put this out on
Twitter, which might have been our mistake. We went to some of the communities
that we heard from in the roundtable. And really everyone was as intrigued and
as puzzled as we were.
We have continued to work. I apologize in some way because we have not been
as structured and having calls as standards committee. I think what we are
going to do is set them up. But working around the interruption in the
government, we did have a couple of email exchanges and work.
What we decided was that actually we are not getting any big takers because
there is not a lot of activity. From there, we came to the proposal that you
see outlined here. This was a tremendous input from Josh Rosenthal to create a
framework to gain and share mental model and terminology among the group and
external participants and use the model against which we might plot out
environmental scan of current activities and best practice noting the
opportunities and challenges in the typology. You notice the convergence here
The idea was to create a straw man and agree upon the basics. In other
words, before we asked people to show us what you have done with this, we are
going to have to create the building blocks. Up here is the straw man that we
will work from tomorrow, the framework. The columns are the ways you can use
data. You can use data to profile as we have seen with various heat maps, et
cetera. You can use the data for an intervention or you can generate outcomes
from the data. The rows are HHS data at the top, social media data at the
bottom. I believe intervention data is maybe local data, but I have to clarify
that with Josh.
As we begin to think about it in our work group, we have heard about
examples. For example, Chicago flu work using Twitter as a phone tree to
increase awareness and a channel to Twitter users to an online HHS resources.
That is using social media data as an intervention.
Another example might be the work that we heard about at our last meeting
about in Seattle with EMT looking at mortality from myocardial infarction and
then developing some interventions through EMTs to reduce that mortality.
Another is some work in Louisville where they had some very bad health and
publicized that through social media and begin a conversation to prioritize
Finally, there was a journal article on Facebook hospital likes and looking
how that aligned with performance.
There are these tantalizing little snippets around things. And actually,
datapalooza is all about that, taking one interesting map of obesity or fresh
food or whatever and learning from there. But in terms of end to end start with
a concept, use the data, make an intervention, get an outcome, we did not have
anything like that.
What we would like to do is create a framework very much aligning with what
Bill was saying, create the framework, a mental model, define terms from
meaningful exchange within the work group and committee and create an
environmental scan of who is doing what. Basically, what we are going to do
tomorrow is work on those different cells drawing from the experience of the
work group members as well as datapalooza. We have some other examples of
groups. I think I sent along Mark Silberg’s social health insights, how he has
been using Twitter both content and volume of activity. The number of tweets as
well as the number of followers. Introducing basically new ways of thinking
about this kind of information. It is not like our randomized control trials.
It is very different. How has it been shown to enhance?
We would like to tomorrow identify who would be people we would like to have
in a hearing. Then we would like to have a hearing with very structured
questions that get to the issues that we have been talking about today around
standards, around privacy, around data integrity. To bring back to the full
committee these very same themes that I think we have been hearing about and
come to some sort of understanding of where examples, where social media has
made a difference, in what way, what are the pitfalls, the dangers, the things
to watch out for. We felt that that aligned with the charge really trying to go
out there a little bit and to these innovative — I think there is lots of this
social media data. It is out there. It is kind of like the elephant in the
room. But to help get to a point to say is there value. If you begin to think
about what that value is, how do you think about it? It may not be
quantitative. It may be qualitative. It may not be the content of the tweets
let’s say. It may be the volume or the number.
It ties back to what Vickie said. My big insight at our presentation at the
public health meetings. When I heard the person from Wooster say the key thing
about the data is the engagement. I think that actually social media provides
us a tremendous opportunity to measure engagement or to develop and encourage
I will stop there. That is the plan. It resonates exactly. I think it puts
us a little bit out in that we are suddenly doing before we have done a little
bit of the preparatory work. On the other hand, if you met the members of the
work group, you will understand. That is where we are today.
DR. TANG: A question on the focus on social media data. Is it already known
how social media data change over time? Either the people who are on it now
lose interest or there are new people that join. It must change over time. I do
not know. Is it already studied? Is this known?
DR. CARR: I have been so always enamored of the Google CDC flu data except I
found out that when the flu occurs later in the year, that data falls apart and
that whole model did not hold up.
DR. TANG: My understanding is it does not work anymore. It was interesting
for a year and then it turned out not to work.
DR. CARR: If you get flu later in the season, all bets are off. People ask
different questions or whatever. That is really a fundamental question. I think
everybody thinks there is all this great social media data. What is it useful
for? It may be engagement. If only that, who engaged and how much, how often?
DR. FRANCIS: Just in answer to your question, Paul, there is a whole
literature about social media, who uses it. Probably Dana Boyd is one of the
well-known scholars in that. There is a whole group at Columbia working on this
kind of stuff.
DR. TANG: They studied it over time.
DR. FRANCIS: Yes. There are lots more to be done with that. First Monday is
one of the journals. It is an open access journal.
DR. CARR: And actually, Leslie was helpful also. Her students went through
and pulled together the policies from the various social media, things we will
take into account tomorrow.
DR. MAYS: I was just going to also comment on the amount of data. The bigger
issue is also not just that, but when you try and set up an infrastructure, it
is like Twitter is great today and something else is great tomorrow and the
ages. That is what is really changing. We are trying to use something and we
had said we were not going to use it and we are seeing that older women are
actually starting to use it. That is actually the moving target is what is hot
and how long can you build something for a particular social media. That is why
it is really good that we are just using the word social media so that we can
roll in the same way that it does. I think broader groups are starting to come
onto it, but you just have to know which one.
DR. COHEN: Just a general observation. Ob presented and Linda presented
about a roadmap. Bill presented about a framework. And Justine is talking about
a framework as well to do the data work group work. I do not know whether we
need a hierarchy of frameworks or a framework of frameworks. We are all
converging hopefully to think broadly about how to hang the different efforts
that we want to do on a structure moving forward. It would be nice if we could
unify these thoughts. Maybe this is a task for the executive committee or a
full committee discussion so that we are all comfortable understanding how the
different bits of work fit in as we move forward.
DR. CARR: I would just say, as Bill did his presentation, I see what we are
actually coincidentally doing is an application of what he is saying. It may be
a little bit asynchronous. I do not see divergence. I see convergence and sort
of take it to ground. Even if it is premature and we learn nine-tenths of what
we thought was good wasn’t, that is valuable information.
DR. TANG: I am sure you are aware of this, but I just wanted to see if
deliberately you are paying attention to the mosaic that is available in social
media. When you combine what is publicly available — but also publicly
available in your profiles whether it is Facebook or Google Plus, there is a
huge mosaic and would we apply the same rules, principles, and stewardship to
that data because that is what makes it “useful” and informative, but
you are going to run into the same problems.
DR. CARR: One of the take aways at what was a roundtable that we had in the
spring was maybe we need a whole new paradigm, a whole new model on privacy. I
do not mean to be — but that was one of the things that we said that the old
models do not fit. I think having a hearing gives us a safer place to be to
hear what is being done, how it is being done and how these other issues are
thought about so that the deliverable on this would be something that says
watch out for this. Be sure you do not do that or here is whom you inform if
you are planning to do this.
DR. GREEN: Leslie, do you want to go next and then Linda, do you want to
wrap this up?
MS. KLOSS: I was struggling with the same thought that Bruce had about okay
now we are all going to be frame working. But I think there is a way of looking
at the roadmap more narrowly and rationalizing. The bus is moving. We need
greater clarity around the standards work. If we develop that piece of work, it
does drop into the framework at some point. I do not think we can slow down on
that because there is just so much going on. I think it makes sense that we
have the longer-term developmental framework that could really be
transformative. In the mean time, we just really need to move the standards
work forward. I would not worry so much in the short run about is this all
going to tie together because I think it will.
DR. GREEN: I want to thank you for the optimism. That is a good note to end
on. A little meeting management here. Now we are a little bit behind. However,
I think that whether you want to or not, I am going to declare victory on goal
one. Our first goal was to consolidate our understanding of what was going on
across all the subcommittees and the workgroup. I think we made some serious
progress on that. The purpose of achieving that goal and the reason it was
first was so we could go to work on the second, which we are about to do. That
is interpreting the shared understanding into four different perspectives.
Another surprise maneuver for Linda and Bruce sitting there. As I recall at
the last meeting, we were actually going to flip and have the privacy,
security, and confidentiality folks get the first half of this session. Does
anyone object if we do just flip that and have them start it off? We will leave
it just the way it is.
(Whereupon, the Full Committee adjourned.)