[This Transcript is Unedited]

Department of Health and Human Services

National Committee on Vital and Health Statistics

June 20, 2013

National Center for Health Statistics
Hyattsville, MD

Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030


P R O C E E D I N G S (10:05 a.m.)

Agenda Item: Welcome and Call to Order

DR. GREEN: Ladies and gentlemen, please take your seats. We are going to
start. We’re going to start with Bruce Cohen in doing our usual routine. We’ll
run the table. Please introduce yourself and declare any conflicts of

DR. COHEN: Hi, I’m Bruce Cohen from Massachusetts Department of Public
Health, member of the full committee, co-chair of the population health
subcommittee, no conflicts.

MS. MILAM: Good morning, Sallie Milam, West Virginia Health Care Authority,
no conflicts.

DR. CARR: Justine Carr, chair of the Working Group, Steward Health Care, no

DR. MAYS: Vicky Mays, University of California, Los Angeles, member of the
Population Subcommittee and Privacy Subcommittee and no conflicts.

MR. BURK: Good morning, Jack Burk, Harvard Pilgrim Health Care, member of
the Full Committee and member of the Subcommittees on Privacy, Confidentiality
and Security and Population Health, no conflicts.

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

DR. STEAD: Bill Stead, Vanderbilt, member of the Full Committee, no

MS. GOSS: Alix Goss, Commonwealth of Pennsylvania as the health information
technology coordinator and program director for the statewide health
information exchange, member of the Standard Subcommittee, member of the Full
Committee, no conflicts.

DR. FRANCIS: Leslie Francis, University of Utah, law and philosophy, member
of the Full Committee and co-chair of Privacy, Confidentiality and Security and
no conflicts. And I should also note that I got here about an hour and a half
late yesterday and should’ve at some point noted for yesterday’s meeting, no
conflicts but didn’t get the opportunity. Thank you.

MS. KLOSS: Linda Kloss, health information management consultant, member of
the Full Committee, co-chair of the Privacy Subcommittee, member of the
Standards Committee and no conflicts.

DR. SUAREZ: Walter Suarez, Kaiser Permanente, member of the Full Committee,
co-chair of the Standards Subcommittee and no conflict.

MR. SOONTHORNSIMA: Ob Soonthornsima, Blue Cross and Blue Shield of
Louisiana, member of the Full Committee, co-chair of Subcommittee on Standards,
no conflict.

MR. SCANLON: Good morning, Jim Scanlon, Deputy Assistant Secretary for
Planning and Evaluation at HHS and executive staff director for the Full

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

MS. GREENBERG: Good morning, Marjorie Greenberg, National Center for Health
Statistics, CDC, and executive secretary to the Committee.

(Introductions around the room.)

DR. GREEN: Thank you very much. I would like to welcome any of the working
group members or staff that are willing to take them, to occupy any empty seats
you see at the table. Do we have anyone on the phone? Apparently not.

You will recall that Jim Scanlon was busy doing important things yesterday
and Susan Queen aptly reported a couple of items from him but we have him with
us today and we’re going to open up with a quick update from Jim.

Agenda Item: Updates from the Department

MR. SCANLON: Okay, thank you Larry. Good morning everyone. So let me just
bring the committee up to date, some of these are updates and some of these are
new developments that we wanted to make the committee aware of.

But I think at the program and policy level I think I mentioned that we were
in the process of revising the HHS strategic plan. This won’t be a major
revision. It’ll be kind of a tweak. We’re required to update the plan every 4
years and I will be happy to brief the committee.

But basically there are just four goals in the plan: Strengthening health
care. There are a number of objectives relating to HHS programs under each of
these goals and each one of them has a strategy and performance measures and so
on. So the first one is strengthening health care. That’s all of the health
reform and all of the other health delivery and health financing activities at

Goal two is advancing scientific knowledge and innovation. This is all of
the research, the technology, the approval and so on, FDA and so on, for
technology and innovation.

On the services and the public health side, goal three is advancing the
health safety and wellbeing of the American people. This is where we have our
public health programs and our human services programs as well and a lot of our
prevention and protection efforts.

And the fourth goal deals with insure the efficiency, transparency,
accountability and effectiveness of HHS programs. We include here our health
data initiative. Our initiative to make HHS data available to communities,
individuals, families, and others to improve health. And again, we have very
specific objectives in each of those but I think you’ll see that data is part
of virtually every one of these. You don’t know where you are or where you’re
going and you can’t carry out a lot of these things unless you have data to
assist and help you.

In terms of continuing, in terms of activities at HHS, obviously a big part
of it is implementing the Affordable Care Act and let me focus on the data
parts of this. So you remember that we wanted to be in a position to be able to
monitor how ACA was implemented and also what it’s impact is.

So October 1st is the date that the marketplaces will turn on the switch.
Seventeen states have elected to do their own state-based marketplace and most
of them say they’ll be ready. They’ve also given specific names to their
marketplaces so they’re all different.

And then for 33 states we have – HHS will be running the
federally-facilitated marketplace. There are about six or seven of those states
that are partnerships. In other words, we’ll be running the website and the
marketplace but they’ll be doing things like outreach and enrollment and other
activities so they’re partnering with HHS on these activities.

So October 1st, this all begins. People will be able to apply for
the market-based – the plans on the exchange. They’ll be able to apply for
subsidies and hopefully this will all work. Everyone says they’re ready.

So we’re looking at what data do we need to be able to see how this all
unfolds and sort of what are the real impacts. So in other words, how does the
coverage of health insurance, how does it change over time, how there are some
public health and population health measures as well. There’s the utilization
of preventive services change with the no copayment for preventive services and
so on.

So what we’ve done here is a couple things. We have, as a strategy we have
taken our major surveys, which many of you are familiar with, and we added
questions and expanded the sample and so on to be able to measure some of these

So for the health interview survey, which many of you are familiar with,
we’ve added questions – there are already questions on health insurance
coverage and income and so on. We’ve added questions on access to care,
difficulty finding specialists, usual source of care, use of preventive
services, a number of things that we’d like to monitor in health reform. And
we’re already using it.

To the NCHS, basically the survey of office-based physicians, the NAMCS,
we’ve added questions on and expanded the sample there so we’ll be able to tell
the extent to which physicians are accepting new patients, accepting Medicare
patients, accepting Medicaid patients and so on, and some idea about waiting
time and referrals to specialists as well, which is always a concern. So we’ll
be monitoring those as well.

And then we’ve added questions to the MEPS, which really is our really gold
standard in terms of health care use and expenditures over time. We’ve added
questions on – we actually do a survey of employers in all 50 states and ask
about health insurance and we’ve added a number of questions there as well in
terms of employer, what the employer plans are, what exactly are they planning
to do, though generally people don’t like to report what their plans are – but
anyway, we’ll be able to monitor to see what the employers do on their side of
the equation.

The Behavioral Risk Factor Surveillance System, which just about every state
operates in cooperation with CDC, we’ve added questions. They are on health
insurance and specific insurance and we’ll be adding some additional questions
I’ll get to in a minute.

So on the survey side, we’ve really put a fair amount of effort into what do
people think we need to measure. I will say that people are interested in
measuring the degree of participation in the state marketplaces that we’ve been
discussing and the extent to which they’re getting subsidized care, coverage
and so on.

And it’s proven very difficult because we worked with the Census Bureau to
see how do you measure this and we focused on Massachusetts because they were
the only state that actually had this kind of an operation with the
marketplace. And it looks like people don’t really – they’re not like us that
know all these details about insurance coverage and so on and – we don’t even
know either – so they don’t really – are not able to report that well in terms
of that they got their insurance through an exchange or which insurance it is
or that it’s subsidized or not.

So we have developed some questions on experimental basis but in the next
few months, we’ll be looking at if there were a better way to get information
on this question. Now again, you’re asking the consumer to report so are there
maybe from the name of the state exchange or the name of the plan is there a
way to tell that this indeed was purchased through the exchange.

Now we’ll have administrative data, and we were mentioning earlier at the
standards group that the exchanges will use the 834, the standard enrollment
form, so – there are probably other standards too that they will do but again
remember the exchanges are where the individual comes. They’ll be navigators
and certified application counselors and so on to help people through this but
the idea is through toll free numbers through the exchanges, through the
websites, to get people to apply.

There’s a standard application which is on the CMS website now. It’s a
simplified sort of one consolidated application that individuals will use to
apply for the plan and to apply for subsidies as well. And I might mention that
those application forms incorporate the data standards that we adopted, the
demographic data standards that we adopted for surveys earlier.

So at any rate, I think everyone’s putting their heads together and we’ll be
testing some of these approaches as well but until the exchanges actually start
operating no one knows. Obviously no one has participated yet so in October
we’ll start testing more of these.

And interestingly along these lines we’ll have to do a fair amount of
testing fairly quickly once the exchange is operating and unfortunately you’ll
remember we reported previously, we put an investment into a web-based survey
that is drawn from the National Health Interview Survey so it’s basically
taking individuals in the NHIS so it’s already a probability sample and then
going to them through the web, and if they don’t have web access we’ll contact
them in some other way, but there we are hoping to do some experimentation in
terms of do these questions work or not, or so on. And so it’s one of the
quicker response mechanisms that we put some investment in to.

And again, just to continue the ACA impact discussion, you’ll remember that
ACA was particularly concerned about disparities in equity in terms of coverage
and access and so on. So earlier we were asked to recommend some demographic
data collection standards for all of our HHS surveys and the Data Council did
this. We found some good standards to use and the Secretary adopted them and
they’re now being used. They are either already implemented or will be
implemented in all of the HHS surveys and they dealt with race and ethnicity
and this was beyond the OMB standard, sex, disability status, English
proficiency and preferred language. So those are now being used.

We’re now turning, and this is kind of where I was derailed yesterday, a lot
of the public health programs, those of you in the public health departments
know about this, or in community health centers, or in other programs that HHS
funds, that provide services or financing, the worry is what exactly will
happen when more people have insurance. In one sense this is a wonderful thing.
This is one of the three aims that public health has always had, this assurance
function that everyone will have access to care.

On the other hand, if your revenue from your grant at your community health
center will be reduced because now folks have insurance and there’s no need to
pay twice obviously, then that’s somewhat of a threat to you and it’s a threat
to public health departments, state health programs, community health centers
or Ryan White programs, and all the others where the federal government – these
are special programs that pay for or deliver care – when everyone has insurance
for these services there’s a question of do we need to pay twice or how is this

So there is consternation, I think Bruce has heard this in the public health
community about – and you’ve heard it as well about what exactly happens to
these programs in the future, to their budgets and so on. So within HHS, we’re
doing a careful look at and very careful, about what we can really reasonably
expect, including the timeline and the implementation line and so on.

But yesterday we had a meeting of all of our own public health agencies just
to see where everyone was, what they were doing in terms of ACA and what sort
of planning they’d done in terms of what this impact will bring. So again, it’s
hard to read the future but on the other hand, if a lot more people who were
previously uninsured or low income will now have access to essential health
benefits that these other providers are offering than at least there would be a
revenue change. So we’re trying to figure out what exactly, how do you analyze
that and how you estimate that.

And again, along those lines, we’re taking two approaches. One is to try to
see if the surveys can get us information on these kinds of providers which
they don’t usually – the surveys don’t usually get down to that level except
for community health centers where we actually include samples of community
health centers in some of our surveys.

The other thing is to help the agencies revise their administrative data and
their program reporting that they send in so the grantees, the community health
center, for example, would send in a quarterly report of aggregate data and so
on in terms of what kind of information would help them plan this a little bit
better. So we’re probably going to offer guidance as the Data Council is doing
this on standardizing certain data categories so that will help them analyze.
So for example, insurance coverage, what kind of coverage is available, or

The other thing is federal poverty level, which are the thresholds for
whether you’re eligible for Medicaid expansion or subsidies so we’re probably
going to offer, we have a draft now, some standard categories for these
programs to use for those things so that if they can get them on their clients
and these centers, they’ll have a better sense of how they will interact with
ACA and be able to plan better so that – anyway, that was yesterday and I think
we made some progress.

Continuing on the vulnerable population’s side, I think I told you
previously, we have after a fair amount of testing, we’ve added questions on
sexual orientation to the national health interview survey. So since January,
the survey’s been in the field. It’s been collecting this data. It seems to be
going well. And we think we need at least the full year’s data but probably by
next spring, we’ll actually have estimates of that population.

Transgender population has been much more challenging. We’ve met with the
community. We did a lot of research. We looked at what might be available, what
might work. The statistics agencies were fairly leery of going here because
there’s a fair amount of measurement error and it’s a very small prevalence and
there’s some question whether the questions would even be approved with such a
small prevalence because the likelihood of getting estimates will really be
quite difficult.

But what we managed to do, and again, thanks to Bruce and CDC, we’ve added
questions now to the behavioral risk factor surveillance survey at CDC. Again,
this is an option for the states. So there will be a question on sexual
orientation which is largely the HIS question and transgender status.

Both of those will be available for states to use, the behavioral risk
factor surveillance survey is beginning in January and I think we’ll be – so
we’re planning to offer some assistance to states who want to do that as well.
So we’ll see how that goes and hopefully those will work as questions that the
other surveys could think about.

So again, Bruce’s office and staff, were very helpful. It turns out
Massachusetts had already been asking these questions successfully for quite a
while and in the cognitive testing and in the other testing, the transgender
question really worked pretty well. I think people either know or they know
they’re not and there’s a way of answering and it was less of a refusal rate
than income, if you can imagine, which is typically the case. So we’re hopeful
a number of states will pick that up and we’ll start to get data on that type
of population as well.

A couple things, and maybe Susan mentioned these yesterday, we have a number
of projects that we’ve begun. I’d like to brief the committee on several of
them and then get your input on another. We’re just finishing up a nice study
on the role of public health in relation to health IT and we had an
expert-based panel. We had a literature review. We talked to states and so on
and had a nice set of findings and possible directions for states to do better
in localities and formal public health to participate in the opportunities
offered by interoperable health IT.

We have a study underway on small area estimation. We had – Susan’s project,
we had a panel of federal experts who pretty much run these programs on
estimating for small areas and so we had nice findings from there and where we
might go. There was a lot more activity there than we thought.

And then we have another one which we are just putting together and it’s to
look at the health context of big data and Health Data Initiative and
Datapalooza and so on, and our work group and all the other things the
committee does, really to look this so-called mosaic effect, which is the idea
that – and of course the national security agency is showing us how to do this,
so clearly people are doing this – but it’s the idea that you can protect the
identity of your respondents in your survey and your administrative data but
when you post it and it’s available in this big data setting, there are all the
precautions you’ve taken may or may not prevent some – this sort of – you see
how NSA did it, right? They didn’t need to identify, they’re looking at
patterns and interactions and so on. But to what extent when you put all that
together does it provide enhanced risk I guess I would call it of possible
identification, re-identification or so on. So it’s not clear how you do this
exactly other than to be careful in your own data system about how you do this
but that may not be enough in this – I mean there are rules that all of our
agencies use, our researchers use, and they pretty much lock it down in terms
of re-identifying but we’ve all heard of stories and there are folks who make a
living trying to show how you can re-identify from two different sources.

So this study really will be looking at what do we know in this area, what
are the current practices, what’s the real threat and what is it that, other
than not release the data, what are the precautions or strategies that the data
producers and suppliers could do. So we’re just starting on this. Don’t know
where it will lead exactly. We know what the agencies already do and they are
fairly good practices but this is sort of beyond that and I think what we might
want to do is ask – we may ask the committee here or a couple of you to help us
on this little expert panel that a contractor will be talking to and then I
think we might want to see if the committee – if it’s the sort of an idea where
there’s enough research and thinking and maybe have a session of the committee
but I don’t know yet that there’s enough there.

I will end with budgets. We’re now working on the federal fiscal year 2015
budget. The 2014 budget is on the Hill awaiting action and we’re finishing out
the fiscal year 13 and with respect to population data and data, we have
managed, even in these relatively austere times with sequestration and other
reductions, we’ve managed to protect the basic core statistical surveys and
monitoring systems in HHS, at least hold them steady and in some places get
somewhat of an increase.

Again, I think everyone values and understands the need to be able to
monitor health status and health systems performance and so on, particularly
when they are recessionary times and austerity. It’s even more important than –
just like the economic indicators that’s not the time to cut back on them,
that’s the time to strengthen them and probably improve them.

So let me stop there.

DR. GREEN: Thank you, Jim. Terrific report. I’m going to lean on your
understanding. Jim’s going to be here for the morning. I know you have
questions and clarifications you want to ask and he will be available. But we
are going to manage to a very hard deadline which is at 11:30 we’re going to be
done with everything on the agenda up to that point, one way or another.

So we’re now going to move to the Standards Letter and remember we announced
yesterday, there’s also going to be a second brief letter and you guys are
ready to go. I am anticipating that this is going to go amazingly smoothly.

Agenda item: Standards Letter – ACTION

DR. SUAREZ: So yesterday we presented attachments letter and we reviewed
first the regional letter as we sent it to you all. And we had some discussion
about it. Then we presented a few additions made after the letter was sent to
you based on feedback from the industry and we all reached consensus I guess on

And so after that we added some, from the committee feedback, additional
changes and so I’m going to present basically the final changes to the letter.
Again, the letter goes through common themes and observations. We didn’t have
any comments or points or changes on that. And we really concentrated on the
recommendations so that’s where I’m going to focus on.

The first change is on recommendation number one. Bill suggested yesterday
the importance of introducing in this concept of conducting this overarching
review, a placeholder, if you will, for conceptually the need to think how
changes in the standards and across a long period of time various standards are
going to be in existence and so those changes need to be accounted for and be
able to be mapped back and forth in terms of being able to go back to the
standard that were done and used in some earlier times or earlier periods and
map those with the current standards and with future standards are going to be

So we introduced this statement that says furthermore the complexity, pace
and scope of changes require us to rethink how the standards are evolving and
applied, taking into account the industries diversity, agility and flexibility
to promptly adopt them. So with just a placeholder more than anything with
respect to this conducting and overarching review. At a later point when this
overarching review is conducted and more information is put together and
presented back to the community then we’ll expand at that point. Any comments
on that? Okay.

We made a small modification – this statement that you see in the
recommendation two that started with this includes – we did a couple of minor
things. This includes naming an initial attachment transaction type to comply
with by January 1, 2016 as specified by Affordable Care Act, that’s the
deadline specified in the Affordable Care Act, and then for example for claims
– so the adoption of an initial attachment for example for claims. That’s the
only change we made.

The other underline you see there we presented yesterday. Any comments on
that? All right.

This recommendation three that we see here, we didn’t change anything from
yesterday. The change that we discussed yesterday was moving it from
recommendation 14 to up here, but we didn’t change any of the text though.

Recommendation four, we inserted in the definition of an attachment,
supplemental documentation needed about a patient and then put in parentheses
patients because there are instances in which an attachment for certain
business purposes carry information about more than just one patient.

Recommendation number five, the only change we did was deleted the word
medical, because sometimes supplemental information might be of non-medical
nature. So some of the attachments might carry non-medical information and so
we didn’t want to limit the content of the attachment to medical information.

Okay, for recommendation seven, the recommendation seven is the one, as I
described yesterday, that lists basically the standards that are being
recommended by the committee to the Secretary to be adopted. So we made a
slight addition to the introductory paragraph and so I read it. The following
standards for attachment-related transactions are proposed for adoption. The
standards are a composite of the standards that were recommended by industry
and should be included in an NPRM.

So what we are saying here is basically this is our best understanding as a
committee of what the standards that are applicable to attachments should be,
and the ones that should be adopted by the Secretary and so we’re recommending
that. And to include in an NPRM so that there’s more feedback from the industry
with respect to those standards. Any comments on that? Okay.

This change I think we discussed yesterday, splitting this X12 275,
Additional Information to Support Health Care Claim and 275 – this I think we
discussed yesterday. The change that we talked about during the committee
discussions yesterday was adding that pharmacy prior authorization. We
originally had only NCPDP script as the standard, but upon feedback from the
industry we expanded that to say, pharmacist-initiated prior authorization for
drugs or biologics the standard should be NCPDP, the telecommunications
standard that is being currently used.

And then prescriber-initiated prior authorization for drugs and biologics,
the standard then is NCPDP script along with X12 278. That’s the current
practice. If a pharmacist initiates the prior authorization then the
transaction that is used by the pharmacist is the NCPDP telecommunication
standard. And if it’s the prescriber, the physician that prescribes, the one
that initiates the prior authorization transaction, then the NCPDP script, the
one that is used for e-prescribing is the one that is used – along with the
278. So that was just a note of clarification.

Now a very important point that was made yesterday is one of the recommended
standards that we are including is for routing an envelope this X12 275
standards. But a point was made yesterday that in some instances an entity, a
provider, decides to send an attachment directly using the content standard HL7
message, without any envelope because it’s not needed.

And so we needed to clarify that the envelope part is not a required
standard to be used all the time for all the transactions. So we added this
footnote that says the routing protocol included in recommendation seven is not
– well, we should actually probably delete that, just say, the routing protocol
noted above – so this is recommendation seven – is not required when trading
partners agree to use other routing envelope mechanisms.

So what we’re saying is if they decide to use the standard X12 than they
have to use the X12 275 routing envelope. But if they decide to not use an X12
routing envelope because they are sending directly an HL7 message without any
envelope needed, than they are not forced to, on top of it, wrap around the
message with an X12. That’s what we wanted to clarify there. Any questions or
comments about that? Okay.

Recommendation eight is basically the same recommendation 12, we just
brought it up here because recommendation eight is the one that talks about
regulations not defining the specific standard for methods of transport. So we
didn’t change any of the language in here. We just moved it up from below to
tie it close to the list of standards that we’re recommending. So no wording
changes were made.

And then all these other things that you see are just the numbering.

And then recommendation 11 – this is the recommendation that talks about
minimum necessary to further clarify – we’re doing three important things in
this recommendation. Number one, we’re asking the Secretary to include in the
regulations on attachments a note about minimum necessary and the fact that it
applies to this attachment transactions.

Number two, we’re asking the Secretary to, through the Office for Civil
Rights, define guidance or include in the guidance on minimum necessary, a
notation about how the minimum necessary applies to the attachment transaction.

And then number three, we’re actually even going further in clarifying that
with this new statement that reads “in other words, requestors of
information should not ask for and senders should not send more than what is
minimally needed.” That is a simple, short clarification of what the
intent and the applicability of minimum necessary is to this and pretty much
all the other transactions. Any questions about that? Okay.

And recommendation 13 we discussed yesterday. This was inserted so we talked
about it. This is the change attachment but creating an exception of the
ability to do additional attachments.

Recommendation 14 is moved up. This is the one that we moved up. And this
other one actually we also moved up. So these are the two that we moved.

Oh, recommendation 18, we just simply – this was presented yesterday as well
during the committee meeting – we modified a little the language to be more
straightforward about the fact that for pharmacy industry attachments, the only
attachment that applies to really prior authorization is the only one that they
do. They don’t do claim attachments and so we clarified that in this

And that is all the changes so I think we’re ready to finalize the letter.

DR. GREEN: I’d entertain a motion to approve this letter subject to minor
editing before entering the typical process for transmittance to the Secretary.

DR. MAYS: Second that.

DR. GREEN: Any discussion, clarification, are any of you upset in any way?
Are you ready to vote? All in favor? All opposed? All abstaining?

(Letter approved)

I wish to express personal appreciation to Ob and Walter, on whom not only
myself, all of us rely to a great extent because of their expertise. Quite
frankly, most of the committee members don’t really have in-depth knowledge of
these rules and standards. I’ve come to have so much respect for you two as you
lead this subcommittee. And sitting in on the committee’s deliberations and
being part of the Standards carpool for the week, it is quite amazing what a
contribution these people make to these issues. And we’re very, very fortunate
to have you here. We trust you and rely on you and our ability to unanimously
support this letter has underline in our confidence in you and I just wanted to
express appreciation for that.

You have a second letter.


DR. SUAREZ: Yes, we do have. Thank you. And I have to say, on behalf of Ob
and myself and Lorraine, the staff, I think the subcommittee worked hours over
the last several months, particularly the last three or four months, on
reviewing, analyzing, and discussing this. I think this is truly a reflection
of the very insightful input that we received throughout. And then also thank
the industry and the testifiers and the many people that were involved in this.
I think this really is an amazing effort.

DR. GREEN: You know, we can learn too, and I think one of the things the
committee learned out of this letter was the value of posting a week in advance
the letter because we got some of our most useful input right there near the
end with the process. When we’d done the homework, pretty well had the letter
figured out, but then we had that additional opportunity. So maybe we can keep
trying to get that done in that manner.

This next letter is – just to orient the committee again – this is something
of a minor detail that we need to pay attention to.

DR. SUAREZ: So during our regular report that we receive in June from the
DSMO, the Designated Standard Maintenance Organization, they brought up all the
various changes, change requests that have been made in the last year from the
industry and there is a copy, a one page back to back copy of this letter that
we’re talking.

So we receive a report from the DSMO about the changes. In this case, well
pretty much, all the changes that are proffered by the DSMO are changes that
apply to the next version, in the future transaction that the standards
organizations are working on. So people are implementing to the 850 10 and they
are experiencing things and they are providing feedback to improve the
transaction for the next version and that’s the change request process that has
been established and has been working for the last 10 years or so.

But this year we had one enhancement to an existing standard on a standard
that is already in place and being used. It was an important enhancement that
came about because of actually a report that was produced by the departments
Office of the Inspector General where there were some challenges to document
the actual quantity prescribed in the pharmacy transaction, the electronic
pharmacy transaction that is used to submit claims. There were some challenges
to document and to really audit and evaluate the actual quantity prescribed,
and in some cases potentially existing in appropriate fields in excess of the
quantity prescribed in a pharmacy transaction.

The reason for that existed is because in the transaction itself one of the
data elements called quantity prescribed was defined as not use and so by
defining it not use, no pharmacy was using it in submitting those pharmacy

So the change that needed to happen in this current standard was to turn
that data element from not use to conditional use and so this went through
NCPDP standard development organization process. It was reviewed. It was voted
on, balloted and voted on. It was presented to the DSMO as one of the change
requests. It was approved by the DSMO.

And then a letter from NCPDP was sent to NCVHS late last year informing us
about their recommendation to change this existing current standard to modify
that data element. And they communicated that as well to CMS, directly to the
Office of E Standards and Services. CMS, in a subsequent letter in March of
this year, approved that change but they requested that NCVHS look at this and
endorse that modification, that enhancement.

And so this letter is exactly doing that. Basically, the first part of the
letter is just introductory background information and if you turn to the back
of the letter, that is where we state basically we want to take this
opportunity to inform the Secretary that NCVHS is in agreement with the
recommended correction to the adopted standard for pharmacy claims and the
action plan as recommended by NCPDP and supports CMS decision to approve this

So with this we’re expressing to the Secretary both that we agree with this
NCPDP recommended change and with the approval of that change by CMS.

I do want to just make one minor – in the reference line in the front page
of the letter where we say correction – it’s not a correction, it’s an
enhancement. So we’re going to change the word correction to enhancement to the
NCPDP. That’s the only change from the language that you see here.

MS. GOSS: I make a motion to approve.


DR. GREEN: Discussion. I have a brief comment. I realize that the word data
in the United States by common usage has become a singular noun. But it is not.
It comes from the Latin and it’s a plural word and I would like for us to not
send letters that have this grammatical error in it and this one does.

In the second paragraph where it says, this data will be available, let’s
just change the word to “these” data, and I would ask for staff’s
help in all of our letters to watch for this recurring common error.

DR. SUAREZ: We’ll make that correction. Thank you for that.

DR. GREEN: Any other comments? Are you ready to vote? All in favor? All
opposed? Any abstaining? Thank you very much.


DR. GREEN: We’re going to move right along to Dr. Tang. My setup for Dr.
Tang goes like this. He personifies quality. And he’s been committed to it for
a few years. He’s a quality guy. And to just again frame this, we are now well
past thinking about doing it, we are increasingly functioning as a committee of
the whole because of the nature of the issues we’re dealing with. We are as
interested in quality as ever – maybe even a little more so but we’re not
operating an active subcommittee on quality.

Instead, we have decided that we expect to call out, recognize and
incorporate important policy issues and details in our work that inform and
relate to measuring and improving quality in health and health care. We have
asked Paul to remind us of this in any way he wants to and that’s what we’re
going to do next.

Agenda Item: Convergence of Quality Measures –
“True North”

DR. TANG: Thank you, Larry. And Justine reminds me that she taught me
everything I know about quality.


DR. TANG: We had a very interesting introductory discussion yesterday when
we talked about convergence and are we converging for the sake of convergence
or is there some greater cause. And I think that’s a way of introducing this
topic that Larry asked me talk about, which is what do we want to converge
around, particularly with respect to quality or even aside from quality, our
end goal. Is it going to be around what we know? Or around where we should be

That’s a bit rhetorical but I’m reminded by an example having to do with
quality measures so we had this real fast track need in HITECH in the ERH
incentive program to have quality measures because that was actually called out
in the statute. And the only thing you could do since it takes a matter of
three years to develop and approve quality measures or endorse quality measures
is to retool the old one, what we had.

That turned out to be not a really good experience for almost anybody, which
might be very emblematic about if you just retool what you already thought you
knew, we might not get to where we want to go. So maybe we should be more
deliberate and systematic about looking about where we want to go overall for
this committee in the work with data and information.

So I think there’s a bit of risk. We’re right now in the perverse fee for
service world where we measure and get rewarded for doing things to people. We
try to measure what we do to people, not so much about what we shouldn’t do to
people but do to people.

If we switch all the way over to population management, which seems new
although public health’s been doing population assessment for a long time, we
might be pointing our compass at another thing that might not be exactly where
we want to go. So if we manage to population averages, of which there aren’t
any real human beings that are at that average, than are we really – is that
really our True North?

So the former Quality Committee, even in the days that Justine roamed the
earth, we started focusing on measures that matter and we rapidly went into the
community themes in the past year, year and a half. And I think it’s been a
really good True North in terms of the concept. But I think our discussion
yesterday said, well, how do you grab on to that concept? How do make that
concept concrete? What are the new measures that we’d be looking towards?

Because if we jump to just population, managing population means we might
not get to where we want to go and this country works really well when we have
really good metrics on where we want to go.

So what I mean by that — so some examples of quality measures if you take
it from different perspectives, from the individual, from the provider who has
to execute these things or from a community’s point of view, we’ve been
learning a lot but maybe it’s worth putting into words. So from the
individual’s point of view and I’m still struck by one – Powell gave us a
testimony way back when we started this on measures that matter talking about
how individuals actually can’t relate to means so even if we have public
reporting and all transparency about what’s this doctor’s mean X – I don’t know
what it means to me is the claim.

So in fact, ironically instead of risk adjusting everything so that we have
something that represents nobody, maybe we should keep them stratified so we
can figure out – actually I’m one of those brittle diabetics or I’m doing
really quite well – how do you do for people like me? That was pretty good and
I think we still haven’t actually – we mentioned it in our letters but we
haven’t said, what should we do about that and maybe we should change. We have
the marvelous opportunity we’ve said in our last letter with the insurance

There’s prescribed measures so people can compare. Let’s help them out and
say, here’s how this kind of patients do or people do and here’s how – and then
you fit yourself in and maybe we actually have a calculator. So figure out how
do these data and these reports apply to me. That would be really, really very
interesting I think.

You could also stratify it by disparity variables because I understand where
I am on that spectrum, too, and that would be very revealing, unlike this mean
that we have now.

The other is how would I choose a provider? Well, if I understood how it
applies to people like me, groups like me, I might also see, well, how does
having this person as my provider change people like me. So that’s the
so-called delta measures. Instead of saying, what’s the population average now,
what’s the population average at the end of the year, I still have no idea how
it applies to me.

So what if I do my stratification and I had these delta measures like, for
people like me what percent actually improved? Maybe not go all the way to
control, which we can’t all the time, but how many people improved? Wow, I
would know as an individual a lot more and be able to – that information would
help me make choices.

Now let me switch over to providers because interestingly enough that same
kind of information would help providers. So providers get measured again under
the population mean and sometimes it’s a yes/no. I either meet such and such a
threshold for under control or I don’t. You don’t credit necessarily for
saying, gosh, I improved the – whatever it is – blood pressure or A1C for 70
percent of my people with that condition, I as a provider can feel good about
myself and what I’ve done and the patients can understand that too. And it’s
wonderful when that same measure can help two people in a very personalized

The other thing is like connection – on the provider’s side who is sort of
the effector arm like to know that they’re making a true difference. And so
they understand the guidelines and they say, well, these are guidelines that
are based on evidence and I’d like to kind of work towards those. If we get
measures, let’s say, diabetes again, A1C greater than nine when the goal is
less than seven, then you’re being told how bad you are and your goal is to be
not as bad today than yesterday. It doesn’t stimulate the same center in the
hypothalamus that gets you up in the morning and say here’s what I’m going to
do today.

Because with that figure, neither the patient nor the doc knows how good
that person is. And so if we match the quality measures with the guidelines you
activate the limbic system so that the doc knows how am I doing every day? And
in fact you can turn this once a year, one that’s an every 18 months report in
to an in your face every day report with the help of EHR and know how am I
doing with my panel today.

Those are things that without actually necessarily even adding money or
incentive people want to do. When you tap into the intrinsic reward system it’s
really good.

Another piece about credibility, which is how you get buy-in on these
measures — so the studies and the series of studies that link A1C and the
morbidity and mortality that comes from not controlling that, or the same with
blood pressure, really a chain of studies that provides good evidence.

We don’t have that same chain that says what percent when you have heart
failure discharge instructions makes a difference and then you know that the
gaming way is people just print the discharge instructions for heart failure on
the reverse of the discharge form and all of sudden they’re 100 percent. But
the doc internally knows they haven’t made any difference.

So again that’s an example of things that are there, things that are
measured, things that are part of some very important payment systems aren’t
making a difference and that sort of undermines the overall value of these
quality measures.

And the final part about providers is they like to know they can control
something. So if you can control improving a major portion of your panel, they
get like that and they like that reward. And if you don’t have that then you
just distance yourself. You don’t have to stand by it.

And the final group then is communities and we’ve talked a lot about
communities and what makes a difference to them. We’ve talked about the famous
rats but the rats then lead to other things that are more underpinning of the
entire community’s health. That’s a marvelous engagement tool.

So if we could get help understanding the framework – we talked about
framework, stewardship, et cetera – what’s the framework for developing
measures, some that we, the federal government can contribute towards and some
advice on how communities can develop their own measures on things are
important to the community’s health and our actionable.

And these are sort of all things that we’ve sort of talked about but we’ve
not codified into what’s the how-to guide. And that’s sort of what they’re
asking for and then we talked yesterday, one of the effector arms of that is
the up and running RECs for the HITECH program that’s basically funding’s run
out yet they’re already in the field and yet they already know data, et cetera.

So it’s the convergence discussion we started yesterday about what’s the
True North, what’s the goal for use of health to support, use of information to
support health, and what are these effector arms and one of them are quality
measures, measures that matter that can help guide both the efforts and the
measurement and surveillance of our nation’s health.

So that’s sort of just teeing up discussion of how do we get the True North
goals and how do we get the True North tools like quality measures, to get us

DR. GREEEN: Beautiful. Reactions and comments?

DR. KAPLAN: There are examples where people are using measures to really
improve quality and other people who are using the same measures and not making
progress. So a really good example in your own backyard is if you look at blood
pressure control, if you look at Kaiser in Northern California, year after year
they seem to get better every year even though organizations they are competing
with are using the same measures and treading water. So what can we learn from

DR. TANG: Just pure speculation of course, but I think looking at how – I
get to observe docs and how they react to things – if they have the credibility
– if the data and the data’s intent are credible to the folks who affect the
change, like doctors, it really works pretty well.

One of the ways we handle variation reduction, everybody has variation and
you try to – is to walk in to a department and basically be the data slave and
essentially – here’s some data we’ve looked at, what do you think? And then
invariably there’s going to be ways – hey, you didn’t consider this or whatever
it is – and you fix that. And then you get rapidly to a point where people
believe the data. Then all of a sudden the limbic system is activated and they
start working to improve their score, their individual score and how they
relate to their peers.

So this whole peer system and grading system, when people believe in it I
think that’s – with the same measure you can have – and as we all know, it’s
not just the definition data, it’s how you get the thing out and is it the
right data – but once you get the credibility I think you cross that activation
energy and things work really pretty well. That’s just an observation. I hope
that shed some light.

DR. CARR: I have a clarifying data integrity piece to that as well and it
speaks to how much better we’re going to be as we move into meaningful use
stage two – that Paul taught me all about – in terms of having a problem list
and having things like that because the data on blood pressure control relies
upon the fact that there was a claim that said you had hypertension. And what
has been found is that if you have a person who’s on an antihypertensive for
stable hypertension and they’re not coming in for hypertension visit, you’re
not capturing the healthy in-control people, you’re only capturing the ones
that are coming in because they need control. So that’s a great example of data
integrity and the underpinnings but I would also say the problem list solves
that obviously in one way because we capture that data but in another way
because we have that in front of us every day, that oh, yes, how’s hypertension
doing today, let me comment on that.

DR. TANG: Can I just take it back on that a little bit – the same example of
problem list. It has been an accreditation criteria for decades and the way we
fill it out is you just fill out this pink sheet on the front and that’s it.
Because it just has to be there with some words on it. But when you reuse it,
if you reuse it to drive decision support that helps the doc improve his or her
own score every time they see a patient and then that score you believe in,
everything just works. So what in meaningful use what we’re trying to do one,
so there’s a requirement that you have a problem list, one or none. But the
most important thing is what’s coming in which says – and in the EHR you build
in tools to help improve the accuracy of that. It’s through that reuse of that
data, just like we always talked about, it’s reuse and that data will have the
physician support that will help your report and that closes the loop and all
of a sudden people will understand and appreciate that. That one effort to do
it one time – get the problem list, get that problem entered on the problem
list, pays you back over and over, including in your prescription renewals, for

DR. KAPLAN: Just one quick follow-up comment. So we were thinking, and in
Kaiser, there success is because they’ve gone beyond just the physicians so
they look at it as Kaiser’s problem as opposed to that clinician’s problem and
in fact, they’ve redesigned – they appear to have redesigned their care so that
the patient is cared for by the system – which actually uses the physician much
less but uses other providers.

DR. TANG: It doesn’t matter how it’s done, it’s if the system is programmed,
if you have the system in place, both electronic but also the people system –
which Kaiser does very well.

DR. GREEN: If we’re judicious we can run the table – Leslie.

DR. FRANCIS: So I think this is really important and I think it importantly
links to what Jim was talking about earlier which is the whole set of questions
about what ACA is going to do. I think having really good data to see whether
ACA results in or is correlated with in any way improvements in quality or
could be deprovements in quality – we really need to know that. So the more we
can think about this and having good data, the happier a camper I am.

I want to add one thing though to the discussion and to what you said which
is that quality measures, most of the examples that we’ve been using are
examples that are relevant to primary care. They are the diabetic, the
hypertensive, and I just don’t know what we’re doing or looking at with respect
to questions like the percentage of people who don’t get evidence-based
recommendations for cancer care, let’s say.

I mean, that’s a shockingly low percentage in the United States today. Or
surgery complication rates, I mean, you can get pretty interesting data about
surgery re-admissions floating around but you still can’t get data about a lot
of things. So given that so much of the sick care rather than the well care in
the US is delivered at the specialist level, I just want to put on the table
the question whether we’re doing anything about – and just really to ask you to
enlighten me a little bit about whether the kinds of quality measures that
you’ve – the meaningful measures and so on – how they even play in to the whole
specialist area.

DR. TANG: Well, just a quick comment. That’s been a high priority objective
for HHS but we’ve certainly seen that in meaningful use because CQM is part of
the meaningful use program and as you point out, most of the measures that are
endorsed and available are in the primary care area.

It’s a bit of tautology because a lot of the activity has been driven by
primary care and the complement is also true – there hasn’t been as much work
in developing quality measures and testing them and getting them endorsed in
the specialty area.

That’s something the government’s trying to motivate but it’s – for example,
NQF receives measures which it may or may not endorse but it doesn’t create
them. The government can contract to have certain measures – and they are, of
course, CMS is, but again, I think this is the fact that it advises HHS about
data and about information and it could have a role in saying what are the
attributes of quality measures as applied in your case to specialists, what
should it look like, and then find ways to make it, motivate it to happen.

MS. KLOSS: Thank you for this discussion. I guess I just wanted to bring to
the table more of the data view and that is that we’re really at a really
interesting moment in time as what I’m observing and working with organizations
that are developing the analytic tools is that we’re on a rapid course of
learning how to use data and learning how to improve the quality of data in
health care organizations. And doing it often without the background training
or skills or support systems.

But we’ve been looking for the flex point to improve data quality and
improve sophistication in data use and the analytics is what’s triggering that
and it is really a remarkable moment in time and there’s some learning that
should be going on now, collective learning and ways that perhaps the committee
can encourage this learning.

DR. SUAREZ: Thanks, I have two comments. The first one will be from Kaiser,
I should probably make a couple comments about the points that were made. The
critical part that I think we work on is really what we call health IT
enhanced, evidence-based practice. So trying to utilize health IT tools,
advanced health IT tools to support practice.

But at the end of the day, it’s all about creating the appropriate workflow
modifications in the practice that are reflective of the need to adjust because
of the findings of a particular metric that’s not showing improvement. But then
also providing the appropriate support through advanced clinical decision
support tools and really utilizing kind of a new generation of CDS or clinical
decision support to support the practice.

So I think, and certainly Kaiser as a large organization is not perfect and
we’re always striving to find ways to improve that. But my point, my comment I
guess about quality measurement is in some respects we have been for the last
many years using a set of very limited number of metrics and measures to
evaluate a particular condition.

So we have diabetes, we have five measures, three measures and what we
haven’t in some respects done is take a more comprehensive view of diabetes –
and not just diabetes but a patient with diabetes with all the factors
including things that Leslie mentioned, sort of for cancer as an example that
she gave.

But pull out what are the 50 not five, but 50 or more measures that
comprehensively create a true picture of the quality of care provided to a
patient on any condition, chronic condition is an example here. To me I think
that is one of the futures I see of quality measurement, is really stepping
back and looking at a much larger picture of a condition and all the many
indicators that show a true quality of care. And forming some sort of a
composite approach of the measurement.

So I think that’s an opportunity that I see that we have. We still depend on
again this five or six measures of a particular condition, or three or four, or
something, one or two, and that’s truly very limiting. We’re scratching the
surface in terms of quality of care for a particular condition.

DR. GREEN: Okay, I apologize to Ob and Vickie but we’re going to stop. We’re
going to keep going because we’re going to be starting our 11:30 presentation
at 11:30. I need to do quick housekeeping things. Other people that have joined
since we introduced ourselves that need to introduce yourselves and declare

DR. NICHOLS: Len Nichols, member of the committee, no conflicts.

DR. TANG: Paul Tang, Palo Alto Medical Foundation, member of committee, no

DR. GREEN: I want to thank Paul for that and I want to ask a privilege here
to the people who prepare our minutes, I would like to ask you to create a
record as close as possible from the transcript about Paul’s presentation. We
want to hold on to that and have it in minutes.

That gives me an opportunity to do another housekeeping thing. Did any of
you spot anything in our minutes from the last meeting that you cannot live
with? Okay.

We’re going to move right on to the report outs from the subcommittee work
groups. I don’t think the standards committee has had enough time today so
we’re going to start with them.

Agenda Item: Report Outs from Subcommittees and Working

DR. SUAREZ: So with the completion of the work that we just did on the
attachment, really we have sort of a window of opportunity to concentrate on a
couple of other priorities. We have some responsibility still, of course, under
the Affordable Care Act, but the next round of things don’t happen until some
time next year.

So very briefly those include the review of the operating rules for all the
remaining transactions including claims and claim attachments actually
operating rules. But there aren’t any of those yet in place or developed and so
we need to let the industry develop those and this takes months. So we’re
looking at some time next year when we will be receiving from the authoring
entity of operating rules those operating rules for the remaining transactions.
So we don’t have any other really priority.

There are either two or three major aspects of administration publication
that are still going. One is the health plan certification regulation. We heard
yesterday in the update from CMS that there is a MPRM on the way in clearance
now in CMS and it will take a few months but we might see a proposed rule on
the health plan certification by the fall of this year. And this is the health
plan certification requirement in the Affordable Care Act where health plans
have to certify that they are in compliance with, and meeting all the
requirements of the standards, the operating rules and all those things, so
major, major thing for health plans. So we are going to wait for that and see
when it comes up, we’ll certainly have a discussion with the subcommittee on

The other one is the health plan ID. The health plan ID is still in process
underway to be put in place. Health plans must start or must obtain their
number by October of next year so they still have just a few months to develop
their strategy for enumeration as a health plan and then obtain a number by
next year and then the compliance of beginning to use that number in the
transaction doesn’t happen until later on.

And then the third item of course is the big ICD-10 transition and so we
have to continue monitoring the progress on that.

So that gives us a window of opportunity to really focus on a new set of
important priorities. The very first one I think that we discussed as a
subcommittee is the road map. So we talked about in many times here in the full
committee and then in the subcommittee and during the last few days about a
roadmap, the need for a roadmap. We keep emphasizing that and as Marjorie I
think said yesterday we should move from talking and move to doing and that’s
what the subcommittee wants to do. So we’re going to over the next several
weeks regroup as a subcommittee and begin to outline this roadmap and bring
back a presentation, a review of our conceptual perspectives on the roadmap to
the full committee in September. So that’s our plan for that.

There are a couple of other priorities that we talked about. One is on
looking at public health standards. We heard the importance of standards in
public health transactions such as vital statistics transactions and there are
many other public health transactions, public health reports. A number of them
are being adopted under meaningful use or required from the provider
perspective to have an EHR that’s capable of communicating transactions with
public health.

So we want to ask the National Committee on Vital Health Statistics and the
Standards Subcommittee, we want to take a look at standards related to public
health transactions and where they are. So that’s another priority area we’re
going to be looking at.

The third one is on the impact of health reform as we begin to implement in
October along the way of the next several months and market the marketplaces,
all the various components to the marketplaces and insurance exchanges and all
that, the impact that standards are having and the need for enhanced standards
or changes or whatever. So we’re going to be monitoring that and some time next
year we expect to be able to convene some sort of a session about where are
things with respect to the applicability of the standards.

I think those three I know of, and I don’t know if you have another –

DR. GREEN: Will there be a HIPAA report?


DR. SUAREZ: We didn’t talk about that during the meeting this morning but we
will get back to that on our next call of the subcommittee.

DR. GREEN: I think you’ve got enough on your table.

MS. GREENBERG: Because we use this discussion, update the work plan but also
to plan but also to plan for future meetings and it’s my understanding that the
Standards Subcommittee may have a presentation on, kind of a high-level
presentation on the whole roadmap area for discussion by the full committee in

DR. SUAREZ: Yes, that is correct.

DR. GREEN: Let’s jump to Leslie and Linda.

DR. FRANCIS: We continued our discussion with very helpful about proceeding
to think about how to make the stewardship framework more practical so people
can visualize and use it and we will be following up with that, seeing what
information we have, what more we might need. If we do need more there may be a
need for some kind of a hearing in the fall.

The other set of issues with respect to our more traditional HIPAA
responsibilities questions that were left unaddressed in the omnibus
rulemaking, in particular minimum necessary and accounting for disclosures and
Mia was actually going to talk to you, I think, and just let us know whether
there’s anything that the department thinks we could usefully say on those
issues within what you know as the kind of timeframe that we work within. And
if there is, that also might call for some kind of input. So that’s where we

DR. GREEN: Linda, anything else? Sallie and Bruce.

DR. COHEN: I want to build on Paul’s theme about frameworks for community
measures and how-to guide. I think yesterday we had a very productive
generative conversation but we need to do a little bit more strategic planning
and the focus is where can we as a national committee, make a difference. So we
want to build and we hope to have these conversations with the other co-chairs.

So we want to build on the community as a learning health system in several
ways. We want to expand in the priority area of how the federal government can
promote technical assistance and building on Paul’s thought, what are the new
innovative potential models to sort of reinvigorate the federal role, not only
as a direct provider of technical assistance and working with communities but
also with this whole group of current data providers who are already working
with communities and foundations with whom we traditionally haven’t partnered
but who are doing enormously productive community work.

So that’s the general space we want to be in and the ways we’re thinking of
being in that space are considering a letter to the Secretary to sort of
reiterate the importance and commitment of the department around community
issues. We want to continue our review of current technical assistance and
resources provided by HHS. And we either want to expand the community as a
learning system report to incorporate the themes in the roundtable or develop
an independent report sort of based on Susan Kanaan’s initial summary.

For next steps we’re thinking after all that’s done and we have a better lay
of the land, we might want to consider a workshop next year in the spring that
really focuses on bringing the feds who are in this space, data intermediaries,
the Beacon Nation and foundations together. And the general area would be – the
goal would be to develop guidance for the Secretary of how the federal
government can facilitate getting data to communities and how to protect these
data and how to really improve the quality of the exchange. And we could
include the discussion of use cases, guidelines.

I’d like to work with Walter and Ob around standards for some of the
variable definitions and datasets as well as stewardship.

And an area that we haven’t focused on as much is improving our
dissemination strategies. It was eye opening yesterday to see what OCR is doing
and we should really be moving the ball down the court in that direction.

DR. GREEN: Sallie.

DR. MILAM: I have nothing to add.

DR. GREEN: Marjorie.

MS. GREENBERG: From a process point of view, I just wanted to mention to Jim
that the subcommittee was talking yesterday about the summary that’s been
prepared on the meeting, the roundtable that took place. Sending that to the
Data Council with the request that somebody from one of the co-chairs make a
presentation and solicit involvement from some of the other agencies that
haven’t been – that we haven’t really reached out to so much, SAMHSA, HRSA,
other parts of CDC, other groups.

DR. SCANLON: That’s right and I think we could have a – even schedule a
discussion at the Data Council. The other thing I was thinking is I realize
that besides the health programs of HHS, our human services programs actually
have a fairly significant presence at the community level, often more than the
health area to be honest because the health area deals either with the health
care system or with non-governmental organizations or with health departments.
Our human services agencies actually have community action agencies and other
things at the community level so that’s a great idea and I’d like to follow up
on that.

DR. GREEN: Justine, what are your plans.

DR. CARR: A couple of things, the working group as a reactor body, this
afternoon we have two speakers. One is Richard Dale from Optum Labs in
Cambridge Mass and he’ll be presenting to us on the work that they have
planned. Optum has both medical software analytics platform which will
facilitate analysis of the large amount of data that Optum has, both from EHR
and claims and will be giving some feedback on that and the potential of it,
obstacles, et cetera.

Secondly, Dwayne Spradlin who will speak with us momentarily, head of the
Health Data Consortium and overseer of Datapalooza, will be talking about the
road ahead for the Health Data Consortium and again, our reactor role to that.

But I’d like to get back to things that – we’ve been talking about the
community data initiative and Larry pointed out, and I validated, that what we
said in the first report is a lot of what we were saying in the second report.
And I think a key question is, how do we land the plane? We’ve been talking and
planning and hearing and more hearing but I’d like to put forward to the
working group today what are the kinds of things that we could throw out, at
least as ideas to the work group in terms of these things about collecting
data, expanding access to data, using the fed data, expanding technical
assistance. So I’ll bring that up this afternoon.

Secondly, Lilly has put together a nice summary and building on work of
members of the committee on socializing HHS data and we’ve gotten some guidance
from Bryan Sivak on how we might get more tactical on that.

And then finally, as I introduced yesterday, I think that one of the
challenges in the world of big data is getting a structure around all the
moving parts and to sort of take a high-level view and say what does it take to
make these initiatives successful and sustainable. And so we’ll vet my little
model or my borrowed model, I would say, from Harvard Business School.

DR. GREEN: Fantastic. While we go for comments could we get Dwayne
Spradlin’s presentation up on the screen please? Len.

DR. NICHOLS: I was going to ask, and I apologize for having to miss
yesterday afternoon, but I was going to ask Jim, is it clear what we’re asking
for in terms of an inventory/set of case studies of existing relationships
between pieces of HHS and the community so we could figure out who can pull
that list together for us? I know there was some back and forth about we’d like
you to suggest names but you all know the department, we don’t.

MR. SCANLON: We could probably pull certainly, at least, a starting list
together. It depends on what we define as a community obviously. If we
literally mean community sort of grants, for example, at the community level,
than we could probably put that together.

MS. QUEEN: Jim, I have something from SAMHSA and HRSA, a description of some
of the major community program activities that I didn’t send out in time for
the meeting but we’ve got that. I can send it by tomorrow.

MR. SCANLON: I think it’d be a rolling – there are clearly some initiatives
that our community – CDC has the community transformation grants, we have
others that are – the answer is yes, to start and then we’ll refine.

DR. NICHOLS: I’m just trying to make sure the ball is not resting in our
court and somebody’s waiting for a request. Because I think we have made the
request. We’re trying to figure out how to make it happen.

MS. QUEEN: We have a list of the agencies to start with of the major
programmatic community activities.

DR. GREEN: We are going to use this as our official request to see that.
Yes, Vickie, you have the last word here.

DR. MAYS: I’ll try and do this quick because it really is directed towards
standards. I just wanted to get a sense yesterday – because kind of the mental
health issue got introduced in terms of a lot of the coding issues – whether or
not that’s something that there’s going to be some uptake on. I’m glad Bob’s
here today.

DR. GREEN: The mental health coding issues?

DR. MAYS: Because I know we have a presentation, I’m okay if I can – I’ll
just talk to him offline so that we can actually get started a little closer to

DR. GREEN: We are fortunate to have Dwayne Spradlin here. We welcome you and
appreciate your making the time to do this and it looks to me like you are just
about ready to go. Please go ahead and explain to us a little bit more about
who you are and why you’re here.

Agenda Item: Health Data Consortium under Academy

MR. SPRADLIN: So my name is Dwayne Spradlin. I’m the CEO of the Health Data
Consortium. Thank you very much for the opportunity to be here today. It’s kind
of interesting. I didn’t know how many people I would know or don’t know, but
there are a number of people in the room that I either know directly or
indirectly, including Justine and Mo who are part of the planning committee for
Datapalooza, Greg Downing, Damon Davis, Lilly Bradley and others, Bill
Davenhall. So quite a few people that I think we sort of share that we all have
this common vision for open health data having a fundamentally transformative
impact on health and health care in America.

I was kind of smiling in the corner, I came about an hour early and I was
listening to some of the committee reports and then I heard somebody say that
there might be a few folks that aren’t as deep into that material. But I was
smiling because you caught the one thing that for me actually very directly
connected. Between ’91 and ’93, I actually designed the system for CareMart
which was at the time a division of Baxter Health Care and that system was the
real-time claims adjudication engine that they used for about the next 15
years. So I knew the NCPDP and the NDC and those file formats I could say them
in my sleep and so when I saw you up there I was like, okay, all right, these
are my own right here.

So the Health Data Consortium, by way of a little bit of background, as you
all know, it came, it really was sort of begotten by the Health Data Initiative
and ultimately spun out to become a public-private partnership. And we’ve just
held the Health Datapalooza this year. How many of you maybe were in attendance
at the Health Datapalooza? Good, that’s a pretty good rate.

So this was the fourth year. But in a lot of ways, I think the right way to
think about it is sort of Davos in the World Economic Forum in a sense. We
created this wonderful event that’s gotten more and more notoriety, really
allowed people to focus on the issues of health data, inspire people around
health data, but the last 2 years we’ve really been focused on putting the
organization behind it. So if you will putting the World Economic Forum behind

And so about two years ago I was invited to join the executive committee for
the Health Data Consortium and we spent a lot of time over the last two years
really envisioning and strategy what role it can play and that’s really kicked
into gear over the last 12 months. The group asked me to actually run with the
charge full time starting back in February so I’ve been at this I guess four or
five months now. And it’s been exciting.

The elevator pitch, what is the Health Data Consortium. Our goal is to
transform health and health care in America using health data. And we feel like
we’ve got a very unique role as a neutral player, bringing together public,
private, government and other stakeholders across the system to help do just

We think liberating health data is key to igniting innovation and fostering
collaboration. But we know that there are actually a number of things that need
to be done and where we may be in a unique role to do that. So in a lot of ways
I think about our charge as how do we clear the decks. How do we take the
friction out of the system for the use of health data and putting it to work to
actually improve health and health care.

We’re a 501c3, or I guess technically we’re just about to be. We’re
operating right now under the auspices of an organization called Academy
Health. We’re based in Washington, DC. If you wanted to sort of put a label on
us, we’re on an advocacy and membership organization but I think we’re going to
play a number of roles.

Our goal is to actually bring together not just organizations which would
include foundations, businesses, government, but also other parts of the
economy as well. We want to inspire the start-ups. We want to inspire the data
scientists. I think they were the ones that Wired said that would be the
sexiest job title of the 21st century. There’s a whole economy of folks that
have a role to play here and we want to bring all of those together.

Our key asset really has been the Datapalooza to date but I think that we’re
just about to find that taking that magic and that inspiration and really
making that a 365 by 24 effort. To really have that kind of an impact is a big
charge indeed. So I think the Datapalooza will always be sort of that flagship
public event but you’re going to start to see activity throughout the year
here. And that’s already begun.

You see here where I mention the key assets, I talk about the Datapalooza in
a way that makes me smile. I really see it as again a pretty magical event.
It’s sort of in my words, the south by southwest TED and Davos of open health
data. What do I mean by that? I mean by south by southwest, it’s creative and
it’s innovative and there’s an energy and there’s CodaPaloozas. But there’s a
role for TED too here, right.

So these are having the speakers on stage who are really challenging us to
do more and what’s the world of the possible. And it’s sort of the Davos in
that we see the role of kind of policy makers and business leaders as well.
It’s going to take all of those to really make this happen so I think that
that’s actually a pretty unique event.

But we also have enthusiastic leadership and support from around the
ecosystem here. Our founders were HHS, the Institute of Medicine and Robert
Wood Johnson Foundation but as I’ll share with you here in a few minutes, that
has now expanded to other organizations as well. So we’re very excited about
now really beginning to build momentum out there in the ecosystem.

I won’t take you through sort of the context and the backdrop for the Health
Data Consortium. I think these are all things that you know very, very well.
But I will say that I think that largely this is the right time for us. So when
I look at the Affordable Care Act, when I look at meaningful use, when I look
at health care reform, real change very often requires a forcing function.

And I think in a lot of ways what’s happened in the last two years has
created the right kind of tailwind to actually make an effort like this come to
life. So I think we’ve got sort of the tailwind. I think we’ve got the call to
action. I think we’ve got the right groups now coming together that we can
actually play a really vital role here in accelerating the kind of impact I
think this can have to the health and health care system here in the US.

What I want to do here is – and I’ll make sure that you have all of these
slides – but what I’d like to do is I’d like to share a brand new piece of
media that we’ve created to kind of tell our story in 2 minutes or less. That
was our charge. And so those of you that were at the Datapalooza have probably
seen the video. It’s now available on our website but I’m going to see if I’m
still a technology expert here and can actually make this come up on the
screen. So let’s see. This is our story in two minutes.

(Pause for video)

MR. SPRADLIN: I can assure on the website that that right side there you’ll
actually see it but you can hear a voice here. We’ve tried to establish a voice
for the organization which really puts the Consortium in Health Data
Consortium. How do we bring together groups to really deliver on the mission

So just switching back. So I want to share with you a number of programs
that are already underway. The first one I’d like to share is a piece of work
called the Health Data Bill of Rights that we’ve been working on. There are no
less than I think 20 people and organizations so far that have provided direct
comments already in the currently version of this.

Our goal is to create essentially a document that would bind a diverse set
of organizations needs and sort of the roles of the individual in an open
health data system that really recognizes the role of all of the different
players. So the Bill of Rights, actually it had nine. Thomas Getz reviewed this
and had an excellent suggestion which is every good bill of rights should have
10 so we split one into two.

But these are really very thoughtful. We’ve spent a lot of time trying to
make sure that this creates a balance. And one would find if they went through
the Bill of Rights draft as it exists today, you would find that we recognize
what we see as a right of the individual to sort of have ownership and maintain
the access to their personal medical information.

But we also see that they have a privilege to share that when it can be good
for the public good and when they’re comfortable doing so. But we also see a
role for for-profit organizations and state and local governments and all the
different players. And it’s okay for a for-profit to make a profit. But when
there are opportunities to do things for the public good and it’s not
competitive and it doesn’t diminish the company then they have sort of an
obligation to do that. And we’re going to ask different organizations to find
ways to sort of come onboard in this sort of common framework.

So this is right now in draft form. It’s available on the website. I’m also
happy to send it to you but I’d love to get your input and thoughts on the Bill
of Rights. We think it will provide, as a set of principles, kind of a common
fabric for us to all engage.

We have a number of programs slated or already underway. I wanted to mention
a few of those right now to kind of give you a sense of where we’re applying
our resources right now. Promoting open health data. We’ve already begun sort
of presenting at conferences, working with different groups around the country
to evangelize, to inspire around the data and what it can do. We see a massive
opportunity here to really sort of make it a grassroots movement, calling out
for access to this data as well as for the entrepreneurial community, venture
capitalists, larger companies that are innovative and want to sort of put this
data to work to try new things, to really bring them into the mission.

Industry health data roundtables and councils. Beginning in the fall of this
year we’ll start convening different organizations and groups that should have
a very loud voice in where we focus our efforts. Where there are policy
adjustments or clarifications that we can help advocate that will make this
move more quickly.

And where we can identify priorities that will help these organizations sort
of interoperate, work together more effectively in the sharing of data.

Open health data best practices and score cards – I’ll mention that here in
a moment. As well as the health data atlas in the next couple of slides but
I’ll finish here by also talking about HDC University and Resource Hub. We want
to be a resource for organizations to learn about open health data, the
principles, where the opportunities are, but also to sort of take that one
level further.

So imagine innovators. We’ve interviewed innovators from all over as part of
putting this strategy together. And there was a very common theme. Quite
frankly, we’re a little frightened about sort of doing startups in health care.
We don’t understand what the privacy requirements are. The VCs don’t
necessarily understand. We need an environment to sort of test what we do.
Often a clinical environment we don’t know how to find partners.

So the ability to help educate the different players around what this is
demystify it to some degree but also to provide a set of resources so they
connect what they do to the real world in a way that will let them apply their
craft, innovation, and applying capitol and building new businesses and
creating new products we think is incredibly important. So we’re going to spend
a lot of time building those kinds of resources that we think again act as a
powerful catalyst.

I wanted to highlight a couple of things here. We have a brand new, online
presence. And so we’ve created a platform now, the HealthDataConsortium.org
website which is designed in no small part to actually give us the ability to
start bringing on things like resources and education centers, et cetera.
That’s where you’ll find things like the Bill of Rights and some of the things
I’m about to show you here in a moment. But we’d love to have you come to the
website and put your name on the newsletter. We’d love to share information
with you but have a look at that if you like.

The next one is we just brought up something called the Health Data All
Stars and the Health Data All Stars was really funded by the California Health
Care Foundation and it’s built and now housed under the Health Data Consortium,
it’s now a Health Data Consortium asset and we’ll build and evolve this over
time. But in its first incarnation launch just before the Health Datapalooza,
lists 50 of the more prominent health data sets from around the country and how
to get to them.

We have no interest in actually housing data. We want to just sort of take
the friction out of the system to make it easier for data consumers to find
data and vice versa. And we’re working with Bryan Sivak and the folks at HHS in
the CTO’s Department to find ways that we can do some very complimentary things
with the healthdata.gov mission and all the exciting things that they have
planned but we think there’s a role we can play which will make this
information even more available and again, really inspire innovators and others
to sort of use this data and put it to work in really inspiring ways.

The Health Data Open Health Data Scorecard – so we’re about to begin a
program which will ultimately create an open health data practices scorecard.
So imagine states and municipalities being able to assess themselves against a
set of factors to say how are you against – how are you applying open health
data practices. It turns out that the top 20 in states all have a directorate
that’s assigned the responsibility for open health data practices and
establishing a mission for the states. And can we do that for large health care
organizations and can we do that for companies that manage data.

So can we create open health data scorecards and then take that a step
further, benchmark those against others and sort of their sort of related
cohort and then actually identify what some of the best practices are.

And then ultimately we’d like to take a page from sort of what
sustainability has done in corporate responsibility. And that is even allow
organizations in some cases to self-assess formally or even have audited
results to say we are applying open health data practices to our organization
and year over year we’ve gone up the list or improved our scorecard, we’ve
improved our C to a B minute to a B plus and we think that that will create a
very positive and constructive energy out there for organizations to begin
really adopting these kinds of principles.

But I can’t say enough how important it is that we keep the Health
Datapalooza and the mission moving forward. So I had a little bit of fun. I
took some pictures that I don’t even know are sort of out there yet from this
year’s Health Datapalooza and put them up there. But I wanted to really sort of
underscore how important the event is as a lens to crystallize the message and
project it out.

So we’re already thinking about Health Datapalooza V. We don’t know yet
whether we’re going to use the Roman numerals or the years because at some
point that’s going to be Health Datapalooza XIVXX we think so we need to find
out the right nomenclature but next year’s event will be actually held June 1st
through 3rd, mark your calendars and it will be at the Marriott Wardman Park in
DC. We plan to have just as an outstanding of a cast and a program put together
as we did this year.

And our real hope is that we can announce also at Health Datapalooza V some
real advances made by the Health Data Consortium this year in pushing the
concepts out and building membership and building collaborations and
connections between the groups and inspiring the innovator community.

I just wanted to give you a sense of kind of how our membership is building
and what that looks like. So we’ve gone from three to five to now even more.
And we’ve got a whole pipeline building of organizations that either coming
into the Datapalooza or at the Datapalooza said what’s going on over there,
we’re hear you’re doing something.

So now we’ve got, in fact, at the Datapalooza we announced our three newest
sort of founding sponsors. That includes Sanofi US. It includes Athenahealth,
and it includes GE Healthymagination. So those three came onboard officially in
the last two months and we’re very proud to announce those as supporting
members. And again we’ve got a whole sort of cast coming up.

One of the areas that, truth be known, we’ve got to spend a lot of time on
here is how do you actually engage 10,000 or 100,000 people across the country.
In a lot of ways some of the bigger players, the membership organizations that
you see here will play a very prominent role because they’ve got the resources
to help make some of these things happen.

And of course funding – any organization like this needs funding to actually
deliver on the goals. But in a very big way this also needs to be a grassroots
movement so we’re working through what some of the programs are right now that
allow very small organizations and individuals to participate in meaningful

And we’ve also really begun building on what we call the Health Data
Consortium Affiliates Network. It’s one thing to sort of have a national
agenda. It’s another to actually put that agenda to work in ways that make
sense and actually touch people and communities.

So we already have a network of seven affiliate members from across the
country. And those sort of span the gamut, if you will, like the New York
eHealth Collaborative which is really pushing pretty hard these concepts
already. We’re very pleased to have them as part of the affiliate network. To
others like Louisiana which had a Cajun Codefest this year and really put
people to work taking health data and creating new applications and it was
pretty inspiring. But we’ve got the gamut from small organizations to larger

But what’s the goal here. The goal here is to actually connect what’s
happening at the national level to a real local agenda, connecting with
innovators, connecting with local organizations, getting education programs
pushed out on the grout and so forth. So our goal here is to have we hope no
less than four times this number 12 months from now and a much bigger number
later. In fact, we’re having all of the affiliates come together for a strategy
planning day here in about a month and that will be the beginning of sort of
the affiliate’s network version two as we begin the expansion.

There are a number of areas right now where we’re really trying to
understand where we can play the best role. And so I’m not putting these up
here to say that we’re taking any of these on per se but to give you an example
of the kinds of things that are under consideration for us to be real focus
areas in the next 12 to 24 months.

So I broke some of these down into kind of themes and policy standard areas.
In terms of themes, patient information and privacy is an important one where
we can be an advocate and help find a balance across the system using things
like the Health Data Bill of Rights.

Elimination of health disparities in care through health data – it’s a very
powerful message and it’s one that I think has a top-down and bottoms-up
resonance. So we think we can help educate that and use that as a way to really
get people excited about what the potential is here.

Catalyzing a revolution through innovation – these are the Hackathons and
the Codathons and those kinds of programs.

Pricing and cost transparency really seems to have grabbed, particularly
through the Steven Brill article, the Bitter Pill and so forth, seems to really
grab people’s imagination and I think it’s a powerful sort of vector to grab on

And I will say equal participation for the private sector. I did not less
than three dozen interviews, I think between February and April, and a number
of folks like Damon Davis were involved in those interviews as well. But when
we talked to organizations in the private sector it was very clear. In some
ways they feel left behind. They feel like they’ve got a role to play here but
the rules, the regulation, the language doesn’t necessarily allow them to
participate the same way other organizations, nonprofits, foundations,
governments can.

So there may be an opportunity here to sort of bring them in and help be a
voice for them where we’re really talking about having a consortium around the
table, shoulder to shoulder, all working together, recognizing the role of the
different types of organizations around the table but that doesn’t mean we all
can’t do something phenomenal and brilliant for America.

On the policy and standard side, some of the things that have come up really
to the forefront I would say are things like de-identification standards.
There’s a tremendous need and belief I think to both clarify and educate and in
some cases maybe even to offer some guidance from the broader whole around how
we can use these things and turn them into an actual catalyst. What I call
safer harbor for open data practices. There’s a real lack of understanding.

When I talked to one of the – sort of a real leader in this area from one of
the largest universities in the country, he basically said to me, you know,
Dwayne, I work for you, this was an area in Harvard. He said I work for
Harvard. There are all kinds of things we can do. There’s all kinds of data we
can share. But quite frankly the lawyers tell me it doesn’t matter what they
say, right, the risk that we take by moving any data, even presenting some of
this data at a conference is huge, can it be managed – maybe. Is it hindering
our ability to participate and do work for the public good – probably. So can
we help sort of clarify and educate around what I call safer harbor, if you

Comments templates for data licensing and sharing – are there basic toolsets
and sort of business forms that we can put to work that will actually help
organizations do this more easily. Many organizations aren’t set up to even
think about data licensing as an example. Or data sharing or what that looks
like. So we think we can play a role there.

And I’ll say in general robust, secure and reliable health information
exchange across the system is something that we can help advocate. I don’t
think we play a role like you do there but I think we can play a role in
education and advocacy. So those are examples of the kinds of things that we’re
thinking about right now.

And then just lastly again to thank you all for having us here today and for
all of the direct and indirect support there has been for the Health Data
Consortium. But also to say I’m excited about the possibility of sort of
learning today how there might be ways that we can work together. So can we
coordinate messages? Are there projects we should work on together? Can we
engage and educate together?

But what I want you to know is we’re all on the same team here as far as I’m
concerned so you can count us and our resources in and I hope to find some
exciting ways to bring all of this life, so thank you for your time and letting
me speak to you today. I’m happy to take a few questions if it’s helpful or I’m
also going to be here a bit in the afternoon –

DR. GREEN: We know you’re on a tight timeline but let’s see if we can take
one or two. Vickie’s got one.

DR. MAYS: I’m just trying to understand – the presentation is great. It’s
exciting in terms of all the things you’re going to do. In terms of membership
groups that come in, can you give me just a better sense, because it sounds
like it’s big, it’s little. I’m trying to understand how they come in and is
there a cost?

MR. SPRADLIN: That was what I was getting at a few minutes ago. My
background is kind of in business and startups and scaling businesses. And
almost to a fault I have to think through first, how do we fund it? And then
how do we scale it? And that funding initially is important. So we have focused
initially on building the group of initial funders that can give us the
resources we need to actually put some of these pieces in place.

So you’ll notice those are pretty big names up there and the pipeline that
we’re focused on over the next couple months are equally big names. They are
coming in at sort of 25, 50, $100,000 a year. And of course they’re coming in
with very good intent but they’re going to wait and see and say are you
delivering that kind of value to us?

But as I had mentioned, this also needs to be a bottoms-up effort. So what
we’re envisioning right now, and we’re hoping to actually work these programs
out over the next couple of months, is that smaller organizations, startups,
nonprofits, maybe many of them have no cost to participate. Maybe what they get
is they get the newsletters, they get opportunities, invitations to events,
webinars but they’re not necessarily at the national meetings and some of that
sort of thing.

So we’re trying to figure out – I call it the top half and the bottom half
and that’s not for any other reason than to say there’s two halves. But this
sort of grassroots movement, the bottom half, we’re working that out over the
next couple of months.

And then I think there’s the individuals, right. We are getting constant
flow right now of data scientists and students saying, how do I participate. I
want to learn from you. I want to be a part of it. I want to be the first one
to know when you put up your education center. And so we’re trying to think
through what those programs look like.

So our goal is basically to have a few larger organizations do the vast
majority of the funding and then to reach as many organizations and individuals
as we can. But we’ve got a lot of work to do the next several months and couple
of quarters.

DR. NICHOLS: So picking up on that theme and let me just say I’m excited by
what you did. So I was struck at the themes if I recall and there was one on
transparency in price and cost and the next one was equal participation by the
private sector, and Lord knows I’m in favor of finding sweet spots in that
world. But there’s obviously inherent conflict. Can you say a few words about
governance? Who gets to be on the board? What does it take to get on the board?
Are there criteria by which you have to make sure, if you will, the public
voice is always 51 percent?

MR. SPRADLIN: That’s great. So what we are doing right now is we actually
haven’t convened the first membership meeting yet. That’ll happen I think in
the fall. And right now the membership is all driven by the original kind of
founding fathers of the movement. So it’s Robert Wood Johnson Foundation. It’s
IOM. It’s California Health Care Foundation. It is HHS and so forth. So I think
we’ve got a lot of sort of the original purity of vision at this point.

We’re going to begin the process over the next couple of months of kind of
rebuilding the governance structure for the future. And what we’re talking
about right now is should there be a permanent consumer voice – and by that I
mean patients, et cetera. Should there be a permanent affiliate voice
representing sort of the different affiliates and the movements out there
actually talking to people in local communities? And then how do we make sure
that we’ve got a balance.

So again, we’re really sort of as an organization, spiritually four years
old, and I think on paper two years old and in reality about four months old.
But I think that by the fall we’ll have a lot of this really worked out.

Our goal again is to represent sort of the cross-section of America, all of
which is going to benefit and be benefited by the system. So I think we’ll
probably have more satisfying answers for you in the fall. But I think they’ll
be satisfying. I think we’ll have the right mix.

Now one thing I can tell you is that a lot of the organizations, large
organizations doing the funding are going to judge us both on character and
integrity. Are we doing what we said we would do? And they’re also going to
judge us by whether or not we’ve got a relevance to the business and the role
that they play. So we do have to find that delicate balance but I think we can.

MS. KLOSS: Thank you for a great presentation and congratulations on the
Datapalooza. That was my first and it was eye opening and exciting. Our
Privacy, Confidentiality and Security Subcommittee co-chairs just had a brief
confab here and we certainly will be providing a review of the Bill of Rights.
And I think we are really happy to see these kinds of themes leading off when
there’s such a full array of work to be done but you can be sure you’ll hear
from us on that.

And I think to the population and the community initiatives that we’ve been
doing here, I see this as some channels for dissemination that don’t now exist.
A lot of what the committee does in a generative and programmatic way, we’re
looking for new channels of communication so this is great for the whole

DR. GREEN: Dwayne, I want to thank you from all of us. That was terrific.
I’m not going to say what I was going to say because Linda Kloss just said it.
And I just call out to the populations folks, they are almost for sure going to
want to hone in on a community scorecard. So we had sort of an inconclusive
discussion over the last two days about what constitutes convergence. We’re
still not quite sure what it means but I’m pretty sure we just saw it. I think
it’s fair to say your last three words there, count us in and part of our
follow-up needs to be with you, let’s connect.

DR. CARR: Dwayne will be with us through the afternoon, through 5:00 so
there’s going to be a lot of opportunity for dialogue.

Agenda Item: Remarks by the Chair and feedback from the
membership of NCVHS Strategic Implementation

DR. GREEN: I want to give you a quick warning here. Whoever is in charge of
our concluding video, I wish you would get it set up and ready to go. We’re
going to wrap up here running the table. I think I’ll start with Bill over
here. We’ll start with Bill and end with Len. And we’ll just come around the U
here. I’m going to ask each of you to, within three words or less, did you hear
that – three words or less – if you can articulate your own personal summary of
your feedback for the meeting. One to three words, what is it that you would
say would summarize your reactions to the meeting.

I want to express appreciation to the staff for another really rewarding and
terrific four days of NCVHS. Bless their hearts. They’ve had a week of us. And
they still seem to be okay. That seems good.

I want to thank all of you for the preparation and the robust participation
and I don’t feel any need for us to summarize our directions. I think the
co-chairs did a really excellent job and Linda’s last comment about the
importance of dissemination. We have to keep elevating this dissemination
strategy issue up on our agenda.

So before we see a concluding video to send us home, let’s just run the
table quickly. Bill.

DR. SCANLON: I need five. Exceptional Department update, minimal

DR. STEAD: Productive and informative.

MS. GOSS: Simplifying to achieve improvements.

DR, FRANCIS: Importance of stewardship framework.

MR. SOONTHORNSIMA: Collaborate and avoid confusion.

MR. SCANLON: Thank you all, help.

MS. GREENBERG: Energizing.

DR. COHEN: Facilitating community connections.

MS. MILAM: I’ve got more than three. Staying the course on communities and
continuing to focus on communities.

DR. TANG: Find our True North.

DR. CARR: Convergence emergence.

DR. MAYS: Inspiring, occasionally clarifying.

MR. BURKE: Community data rock.

DR. GREEN: Linda, have your words come to you?

MS. KLOSS: No, that’s fine.

DR. GREEN: I want to wish you all safe travels.

(Whereupon, the meeting adjourned at 12:14 p.m.)