[This Transcript is Unedited]



June 22, 2012

Doubletree Hilton Hotel
8727 Colesville Road
Silver Spring, MD 20910

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


P R O C E E D I N G S (9:00 a.m.)

Agenda Item: Call to Order, Review Agenda

DR. CARR: Welcome to day two of the National Committee on Vital and Health
Statistics. I am Justine Carr, Stewart Health Care System, Chair of the
Committee, no conflicts. To my right?

MS. GREENBERG: Marjorie Greenberg, National Center for Health Statistics,
CDC, and Executive Secretary to the Committee.

DR. SUAREZ: Good morning everyone. Walter Suarez with Kaiser Permanente. A
member of the Committee, co-Chair of the Standards Subcommittee, and member of
the Population Health Subcommittee, and Privacy Subcommittee, and no conflict.

MR. SOONTHORNSIMA: Ob Soonthornsima, Blue Cross, Blue Shield, Louisiana,
co-Chair of the Standards Subcommittee, a member of the full Committee, no

MS. KLOSS: Linda Kloss, Health Information Management consultant, member of
the full Committee, co-Chair of the Privacy, Confidentiality and Security
Subcommittee, and no conflicts.

DR. MAYS: Vickie Mays, University of California, Los Angeles, member of the
full Committee, member of the Subcommittee on Populations and Privacy,
Confidentiality and Security.

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

MS. BERNSTEIN: Maya Bernstein, I work at the Office of the Assistant
Secretary for Planning and Evaluation at the Department, and I am lead staff to
the Privacy, Confidentiality and Security Subcommittee.

MR. BURKE: Jack Burke with Pilgrim Health Care in Boston, a member of the
full Committee, a member of the Population and Privacy Subcommittees, no

DR. COHEN: Bruce Cohen, Massachusetts Department of Public Health, a member
of the full Committee and member of the Population and Quality Subcommittees,
no conflict.

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

MS. MILAM: Sallie Milam, West Virginia Health Care Authority, a member of
the Committee, no conflicts.

MS. SQUIRE: Marietta Squire, NCHS, CDC, staff to the Committee.

MS. JONES: Katherine Jones, NCHS, I am staff to the Committee.

DR. TANG: Paul Tang, Palo Alto Medical Foundation, a member of the
Committee, no conflicts.

MS. KHAN: Hetty Khan, National Center for Health Statistics, CDC, staff to
the Subcommittee on Privacy, Confidentiality and Security.

MS. KANAAN: Susan Kanaan, writer for the Committee.

MS. COOPER: Nicole Cooper, staff to the Committee.

MR. LAZARUS: Steve Lazarus, Boundary Information Group, representing CAQH

MR. QUINN: Matt Quinn, NIST, staff to the Quality Subcommittee.

MS. JACKSON: Debbie Jackson, National Center for Health Statistics,
Committee staff.

MR. CRAVER: James Craver, NCHS, representing Dr. Sondik.

MR. BIZZARO: Tom Bizzaro, First Databank.

MS. BANKS: Tammy Banks, American Medical Association.

MS. THORNTON: Jeanette Thornton, America’s Health Insurance Plans.

MR. ROSENTHAL: Joshua Rosenthal, Co-Founder, Roadmap.

DR. DAVENHALL: Bill Davenhall, Subcommittee on Data Access.

DR. VAUGHAN: Dr. Leah Vaughan, Health Policy Group, no conflicts.

DR. CROWLEY: Kenyon Crowley, University of Maryland, member, Working Group,
Data Access and Use.

MR. DECARLO: Michael DeCarlo, Blue Cross Blue Shield Association.

MR. ZATORSKI: Devin Zatorski, also BCBSA.

MR. WANG: Derek Wang, Social Security Administration.

MS. QUEEN: Susan Queen from ASPE, staff to the Committee.

(Introductions around room)

DR. CARR: I would like to welcome in particular, our four new members of the
new Working Group. You heard them introduce themselves, Kenyon Crowley, Bill
Davenhall, Josh Rosenthal, Leah Vaughan. So we will be actually hearing more
about the Working Group today. Todd Park is going to be here with us briefly at
11:00, and then that work will convene at 3:00 this afternoon.

I have to say that if this morning’s subcommittee discussions were any
indicator of the work that the Workgroup on Data will be doing, there are a lot
of exciting ideas that have already been generated. So we really look forward
to working with you. And as we mentioned yesterday, all members of the
Committee are welcome to join that workgroup this afternoon. So welcome

Today’s agenda then is to follow up on the letters we saw yesterday. We are
going to start with Populations, and Todd should be here around 11:00, then on
to the Quality letter. The data conference we will hear about from Marjorie,
standards, and then other subcommittee reports. And then we will adjourn and
have the workgroup this afternoon. Who is on the phone? Please introduce

DR. FRANCIS: Leslie Francis, I am a member of the full Committee and I have
no conflicts.

DR. CARR: Welcome, Leslie. Anyone else? What is the website for people who
want to get connected?

MS. GREENBERG: Lobby 35.

DR. CARR: Lobby 35 is the name.

MS. GREENBERG: You have to select, have a coupon code, and then put in Lobby
35 and then agree to the terms.

DR. CARR: And did you have an announcement?

MS. GREENBERG: Yes, Nicole has asked that people get their luncheon orders.
(Housekeeping matters)

DR. CARR: Let’s turn it over right away to Populations. Maybe just
summarize, to remind everyone what were the issues that were raised yesterday,
and then what have we done to correct them? We will take a look up on the

Agenda Item: Population Health SES Letter –

MS. MILAM: Sure. As everyone knows, we had some really good discussion
yesterday morning with the full Committee. We took all of your areas of concern
and questions and suggestions back to the Subcommittee and worked through each
of the specific areas. We think the letter that we have for you this morning
addresses all of the issues.

So really at a high level just touching on them, there was a suggestion that
we broaden the background for the letter to include reference, not only to the
ACA but to the general need for guidance around SES measures. We have done
that. We heard a request for inclusion of code sets.

We have done that, making it clearer that where our recommendations are
within the letter, including as a recommendation additional study by the
department. We had a lot of specifics within those recommendations. And a
clearer conclusion for what we want the department to do.

So what I would like to do in working with Susan Queen is to walk through
the letter and show you on the screen where the changes have been made so that
you can see what we have done to change the language around. We will go to the
first page of the letter and go down to that second paragraph. I know I am
going to need it a little bit bigger to be able to see it back here. Susan,
could you read it for us, the additional language, so that we can make sure
that everybody understands?

MS. QUEEN: It starts with the second paragraph, where we have added the
sentence: Along with these initial standards, the importance of socio-economic
status and its relationship to health outcomes has been well established. NCVHS
was asked — and we modified that sentence by simply saying SES data instead of
socio-economic status — on health surveys conducted by HHS, as follow up to
the earlier work on ACA. Later on in the sentence we have inserted just the
phrase HHS, the acronym, in front of health surveys. And that is it for that

MS. MILAM: Then we have a change in the following paragraph to reflect the
inclusion of the code sets. Can you help us with that language?

MS. QUEEN: That is where we said standardization of questions and code sets,
and the consideration of modes of data collection. We wanted to be more
inclusive of adding the code sets to identify those, as well as the type of
data collection that is being used.

MS. MILAM: Let’s scroll down and see what the recommendations look like now.
We have a new heading called Overall Recommendations. Susan, if you can help us
with that. And then move on to our changes. We also have a new section, Initial
Recommendations. I think since these are recommendations, let’s read them in
their entirety.

MS. QUEEN: The Overall Recommendation: We recommend that HHS undertake
additional efforts in exploring the gaps in data collection and analysis for
the measurement of SES on health surveys to improve population health and the
efforts to reduce health disparities.

Additional Recommendations: The Committee has confirmed that the following
areas are the key components necessary for the measurement of SES and its
relationship to health, and on which standardization efforts to focus.

Education. Education is considered a key measure of socio-economic status.
Education should be measured in single years, completed up to five or more
years of college. It should also include collection of information on whether
the individual obtained a high school diploma or equivalent. Surveys should
also collect information on degree attainment.

Income. Income is critical for policy analysis, and is necessary to describe
the economic condition of the population nationwide for geographic areas and
specific subgroups. Income is particularly important for research on
disparities in health care access and utilization. Income should be asked for
the individual survey respondent, and for the respondent’s entire family, as
well as household income.

I think we were probably going to want to try to clarify, when we say entire
family do we mean family as a whole or individual family members? Probably it
would be family as a whole.

The collection of income should include the measurement of total income,
earned and unearned, from specific sources, e.g., wage and salaries, dividends
and interest, social security, unemployment insurance, disability income, et

Occupation. Occupation and industry are core socio-economic variables
collected in all federal health surveys. Relevant distinctions in occupation
are not detected by other indicators of SES. At a minimum, a set of two
standardized questions should be implemented, one question to collect
occupation and one question to collect industry.

The set of four standardized questions used in the ACS to collect additional
information about work tasks and employers should also be considered. Automated
coding of occupation and industry of survey responses should be further

Family size and relationships. Family size and household composition are
required to calculate poverty. And survey measures should collect information
on family size and household composition in compliance with official federal
poverty guidelines as issued and published each year.

MS. MILAM: We had a few changes then in our findings. Susan, do you want to
walk us through those?

MS. QUEEN: Yes. We added under the heading of Interagency Collaboration, the
phrase, and discussion, to the broad representation and discussion that is
required across the statistical entities in the research community.

Under SES dimensions, we added some additional language to the last bullet
about individual measures as well as composite indices. The phrase, that have
proven useful in examining the relationship between health outcomes and SES.

We just added, with greater detail being posted on the NCVHS website here.
And for Concluding Comments, we cut a sentence that has now been moved up
further into the letter and added — the last sentence, we just rephrased to
say, the Committee has a continuing interest in this important issue and would
appreciate reports from the department on progress in this area. NCVHS will
continue to support your efforts to identify standards in this important area.

MS. MILAM: Thank you, Susan. Justine, those represent all of the changes
that the Subcommittee made to reflect the conversation of yesterday morning. Is
there any discussion? I would like to entertain a motion.

DR. GREEN: Move for approval.


MS. MILAM: Further discussion?

MS. QUEEN: Could I make one point? There is one modification I would make,
for occupation. I think the statement, occupation and industry are core
socio-economic variables collected in all federal health surveys. I think it is
most, or the majority of. Not all federal surveys, not every single one. So we
just want to —

DR. CARR: — make that accurate. Walter did you have a question or comment?

DR. SUAREZ: Yes. My comments exactly on that occupation, I suggested
yesterday to make a reference to the use of national standard code sets. And I
didn’t mean to actually reference specifically — and Bruce, I got your note —
I didn’t mean to specifically reference the ones that the IOM report on
occupational health information recommended, which were the SOC and the NIOSH,
were occupation and industry.

But I did suggest that it would be helpful to make a short statement that
references or recommends the use of national standard code sets for occupation
and for industry. And basically, just like we have done in the rest of the
statements, we leave it to the decision makers, I guess, to decide which of the
national code sets that should be used. But at least the insertion of the
reference to national standard code sets would be helpful.

MS. GREENBERG: We had that discussion.

MS. MILAM: Walter, we did add on the first page in the paragraph second from
the bottom — I don’t know, Susan, if you can go there — we had an overarching
statement. See if this works for you. You may not feel it goes far enough, but
it is: Standardization of questions and code sets and the consideration of the
modes of data collection allow more uniform data collection and comparison
across surveys. Does that do it for you? Or do you want something specific in

DR. SUAREZ: That is a good start, standardization. But when national
standard code sets exist then the next step is to identify and adopt them for
use. So that is the first thing. And as a general statement I am agreeing with
that. And in fact, this statement that I am suggesting to insert in the
occupation subsection might be applicable to the other sections as well.

DR. COHEN: Yes, I agree. I think if we changed the language that you just
said from standardization to standardization and use of.

MS. QUEEN: Yes, because when the data are collected in the survey, it is
afterwards that you are applying the code to it.

DR. SUAREZ: Yes, it is sort of — and use of national standard code sets
when available. Whenever they are available they can be adopted and used.

DR. COHEN: So Susan, could you go back to the preamble rather than
specifically an occupation and see.

DR. SUAREZ: And by the way, I know this is an important for Judy as well.
She is not here, I see, but this was another point, that code sets and
vocabulary and terminology are critical elements, and very near to Judy’s
heart. So I am protecting Judy’s heart.

DR. COHEN: So would it work to say standardization and use of questions and
code sets allows more uniform? Is that acceptable?

DR. SUAREZ: Standardization and use of national standard code sets, when
available. And I can’t read what the rest says. The important part is that it
is sort of referencing the use of national standard code sets when available.

MS. QUEEN: Do you want, when available, and also applicable? Do you want to
add when available and applicable?

DR. SUAREZ: When available and applicable? That is fine, yes.

MS. QUEEN: In parentheses, perhaps?

MS. MILAM: Set off by commas.

MS. GREENBERG: There is a little bit of a problem here, in that when you say
standardization of questions, but now when you say standardization of use and
questions and national standard code sets, what questions are you referring to?
It was obvious before that you were talking about standardization of questions
and code sets.

DR. SUAREZ: Maybe what we could do is have the standardization of questions
and code sets is important, and then at the end say, use of national standard
code sets when available and applicable — is also important. I don’t know. Is

MS. GREENBERG: So standardization of questions and code sets and the
consideration of — let’s go back to where we were. This may need two
sentences. Standardization of questions and code sets, and the consideration of
modes of data collection allow more uniform data collection and comparison
across surveys. Use of national code sets, when available and applicable, also
contributes to — whatever. Also contributes to —

DR. COHEN: I would say, not also. Just — is recommended.

MS. GREENBERG: Also is recommended?

DR. COHEN: Yes, is recommended.

MS. GREENBERG: Yes, when available.

DR. COHEN: Use of national code sets, when available and applicable, is

MS. GREENBERG: Except that we are not making a recommendation here. This is
more of an observation. So also contributes to comparability, or something.
Does that work?

DR. SUAREZ: Yes. I am fine with that.

MS. MILAM: Susan, would you mind reading those couple of sentences for

MS. QUEEN: Sure. Standardization of questions and code sets, and the
consideration of modes of data collection allow for more uniform data
collection and comparison across surveys. Use of national code sets, when
available and applicable, also contributes to comparability.

Do we want to say data collection, and repeat it with data collection? We
have consideration of modes of data collection allows more uniform data

MS. GREENBERG: I think that works.

MS. QUEEN: My English major mother would have problems with that.

DR. CARR: If there is a little wordsmithing needed at the end we can just
take a final look at it. We have a motion to approve. We had some discussion,
we had Walter’s concerns address, and I see Bruce, did you have a comment?


DR. CARR: Are there any other comments? We can now put this to a vote. All
in favor? (Aye) Any opposed? None. Any abstentions? None. Very good, great
work, excellent work, thank you.

(Motion carries)


DR. CARR: Setting a high bar here. And 30 minutes ahead of time, even
better. Why don’t we move ahead down to the Quality letter? Are we ready, Paul?

Agenda Item: Quality letter, Consumers’ Decision
Making — ACTION

DR. CARR: I think everyone has a copy of the letter. And Paul, if you can,
what was the goal of the letter briefly, and what were the changes that came
about yesterday and what this looks like today.

DR. TANG: Thank you to the Committee for your constructive feedback
yesterday, and I think we have addressed them. I think it will be up to you to
decide whether we have or not. Let me remind the Committee what the purpose is,
the overall message is, in the letter. And as we go through it, make sure we
have covered those purposes.

So one is, we are trying to help individuals, in this case they are
consumers, make informed decisions about their health. It could be selecting a
health plan, it could be selecting a provider, it could ultimately be
selecting, helping them decide about treatment options. So that is our express

And what we wanted to do is, we took advantage of the opportunity afforded
by the ACA in creating health insurance exchanges. The reason why that is such
a good opportunity is perhaps for the first time for many people, individual
consumers of health insurance, individual purchasers of health insurance would
have the opportunity to look at a wide variety of options. And what we wanted
to do is make those options clear and address the needs that they have in
making those decisions.

DR. CARR: Paul, Todd is here. Would you yield the floor to the Chief
Technology Officer of the United States of America?


MR. PARK: How is everybody? It is a great pleasure to be here. I think I
know virtually everyone. Can you just briefly introduce yourselves? I am Todd,

MS. GREENBERG: Why don’t the new members come to the table. We are already
bonding, and at least one or two others will be here later in the day. Hi,
happy to have you here. I am Marjorie Greenberg, National Center for Health
Statistics, CDC, and Executive Secretary to the Committee.

DR. SUAREZ: I am Walter Suarez with Kaiser Permanente. I am Co-Chair of the
Standards Subcommittee and one of the new members of the Data Access and Use.

MR. SOONTHORNSIMA: Ob Soonthornsima of Blue Cross Blue Shield Louisiana and
co-Chair of the Subcommittee on Standards.

MS. KLOSS: I am Linda Kloss, Health Information Management consultant, and I
am co-Chair of the Privacy Subcommittee and a member of the full Committee.

DR. MAYS: Good morning, I am Vickie Mays. I am at the University of
California, Los Angeles and I am a member of the Populations Subcommittee as
well as on Privacy, Confidentiality and Security.

DR. SCANLON: Bill Scanlon from the National Policy Forum, a member of the
Committee and a member of the Standards Subcommittee.

DR. NICHOLS: Len Nichols from George Mason University. I am Innovation
Advisor to CMMI, and I am on the Population and Quality Subcommittees.

DR. VAUGHAN: I am Leah Vaughan, Health Policy Group, and a member of the new
Working Group on Data Access and Use.

MR. DAVENHALL: I am Bill Davenhall with ESRI from Phoenix, Arizona.

MR. CROWLEY: I am Kenyon Crowley with the University of Maryland, Center for
Health Information Decision Systems, and a member of the Working Group on Data
Access and Use.

DR. ROSENTHAL: Joshua Rosenthal with Roadmap, Data Access Working Group.
Good to see you again.

DR. CRAVER: I am Jim Craver at the National Center for Health Statistics,
representing Dr. Edward Sondik.

MS. KANAAN: Susan Kanaan, writer for the Committee.

MR. QUINN: Matt Quinn from NIST and I am staff for the Quality Subcommittee.

MS. QUEEN: Susan Queen, lead staff for Populations, and I think for the new
Working Group.

MS. BERNSTEIN: I am Maya Bernstein, I work for Susan and for Jim Scanlon and
ASPE and I am lead staff to the Privacy, Confidentiality and Security

DR. BURKE: Hi, I am Jack Burke, Harvard Pilgrim Health Care in Boston, a
member of the full Committee and member of the Population and Privacy

DR. COHEN: I’m Bruce Cohen from Massachusetts Department of Public Health
and I am on the full Committee, on the Population Subcommittee and the Quality
Subcommittee, and I will be on the new Working Group.

DR. TANG: Paul Tang, Palo Alto Medical Foundation, I am a member of the full
Committee, Chair of the Quality Subcommittee and on the Privacy Subcommittee,
and a member of the new Working Group.

MS. MILAM: Hi, I am Sallie Milam. I am West Virginia’s Chief Privacy
Officer, co-Chair of Population Health and a member of the Committee.

DR. CARR: Leslie, do you want to introduce yourself on the phone?

DR. SUAREZ: I don’t think she is but I wanted to make the point here, Leslie
and Linda, who co-chair the Privacy Subcommittee, Leslie Francis from the
University of Utah, was on the call this morning on our Subcommittee, and she
will be on the Data Access and Use. She is calling in from Portugal, I think.

MS. GREENBERG: We have a history of that from all over the world.

Agenda Item: Remarks from U.S. Chief Technology
Officer on Data Access and Use

MR. PARK: Thank you for having me over. It is an enormous pleasure to be
here today, and it is with ridiculous amounts of joy that I am sharing the
moment with you as you create the new workgroup on Data Access and Use. I think
it is a historic moment.

You couldn’t ask for a better group of all-stars and a better committee
overall to advance this cause of using health data to improve the health of the
country. I am absolutely thrilled and just want to connote how incredibly
excited I and so many others are about this. So thank you so much for doing
this. It seems like four seconds ago we even talked about the idea and it is

I am not checking my e-mail. I have my notes on my Blackberry so please
don’t think I am checking my e-mail. There actually are a number of general
updates about the open health data movement that I wanted to pass on, on behalf
of the folks at HHS, the Administration. And then a series of initial asks,
which aren’t comprehensive, but just a series of initial asks for the august
new Workgroup on Data Access and Use to consider as you begin your work.

These are in no particular order but I think they are probably important for
everyone to know. One is that we have just hired a new CTO for HHS, my
successor at HHS, a spectacular person named Bryan Sivak, who is really
passionate about open data and the power of innovation to improve health and
wellbeing. He was previously a private sector entrepreneur, then he was the
visionary CTO of DC.

And he was the visionary CTO of Maryland, working for Governor O’Malley,
very heavily involved in health work. And we poached him from Governor O’Malley
to come to HHS as the new CTO. He is very excited at the prospect of working
with you. He will officially start soon and he has as his top priority to
continue the momentum around open health data, open innovation to improve
health and health care. So he is a good egg, as good as they come.

Secondly, moving into the tech realm, we had talked last time about the new
healthdata.gov, and the new healthdata.gov is now live. It debuted in early
June. It has radically improved search capabilities. It has got radically
improved Q&A and community building capabilities. It has got actually its
own native API, so that other people can auto-extract the entire catalog of
data and all the metadata about the data through healthdata.gov.

There are a whole series of challenges. It is an open source platform. A
challenge had been issued to help extend the platform. It is actually
positioning us to move into the realm of semantic linked data, and it is just

Many congratulations to George Thomas, Dave Forrest and the team that built
the thing in two months, literally. And it is something that HHS is very deeply
committed to expand on an ongoing basis. Additional user enhancements will come
out in September, and on an ongoing basis after that.

It continues to ramp up new data listings to be added to healthdata.gov. One
of the latest, which is actually really the landmark data resource, is the
healthcare.gov insurance finder EPI. So healthcare.gov has an insurance finder
that they debuted a couple of years ago. It has the most comprehensive
repository of health insurance plans in the individual and family market and
the business market in the country, along with actually all available public
insurance programs.

And for the private insurance plans it actually has detailed benefit
information that you can use to compare. It has pricing information, how price
actually varies by plan, by zip code, by birthdates, smoking status, gender,
and family size. It was previously only available on this website.

But actually, in early June we debuted an API to it, so that any developer,
any other organization can actually plug into the API, auto-extract the
information. US News has already declared that they are going to build a new US
News Best Health Plans in America site powered in large part by this data which
is very exciting.

One kind of geekalicious detail but important is that one barrier to getting
more and more detail on healthdata.gov at HHS was that it was actually very
difficult in the old platform to get your data listed in healthdata.gov. Now
remember, healthdata.gov isn’t a site that stores all the data. It is just a
catalog. So it lists what all the datasets are, it lists metadata about the
dataset, provenance, documentation, last updated, who is responsible, et
cetera. And then it links you to the place where data actually lives.

But even to get that metadata listing into the catalog was actually very
cumbersome. You had to fill out an Excel spreadsheet, had to go through
multiple — so one of the really cool things about healthdata.gov 2.0, I think,
is that you can actually, just like most other aspects of your life, if you’re
a data owner at HHS, walk up to it, upload it into the site, have someone
approve it, and then it gets posted.

And if the metadata actually changes, then you can go in and change it.
Which is how you would think it should work. So that will be exciting. And Ed
Sondik estimates that actually as a result of that alone there will be
literally hundreds of new data systems from CDC that actually go into the site
from CDC alone in the next two months. Which is really, really cool.

There is a lot of new energy building at FDA about access to FDA data. Names
you probably know, Vicki Seyfert-Margolis and the new CIO, Eric Prakslis, are
very passionate about this. One heads up about this, FDA has done a lot of
pioneering work to make data publicly available.

Their new tack is actually not making this particular data publicly
available, because you actually can’t. But working with pharma companies to try
to get them to pool their data sitting in FDA’s vaults together, voluntarily,
to be able to team up to solve common problems that will be a rising tide that
lifts all boats, in areas like neuroscience, Alzheimer’s, et cetera.

It is something that for whatever reason pharma companies have been a little
reticent about it over the years. But there is progress being made, and that
could obviously lead to huge breakthroughs. Because there are all kinds of
problems where one plus one plus one equals actually in a binary way the
ability to get to an answer because nobody actually has enough data by
themselves to get to the answer.

Anyway, it will actually be a rising tide that lifts all boats and improves
public health. So that is a very exciting track that has been boiling for some
time. Well, simmering for some time, but it is beginning to actually
potentially approach a boil. And Eric and Vicki are major sources of heat, in a
good way, on that.

The West Wireless Foundation has actually debuted a new health data
innovation fellows program where they are funding health data innovation
fellows to come join HHS, to help liberate data, to help educate the world
about the data and help get feedback about how to improve the data. I am sure
these fellows will become your best friends. They will become instruments of
your will in many ways. They can follow up on stuff that you tee up.

And Pierce Graham-Jones, who is a rock star, is the first fellow, and he
started at HHS. And if he is not here, we will make sure that he gets
introduced to the workgroup very, very soon. Pierce Graham-Jones, who actually
did a bunch of great work at ONC prior to becoming the first West Wireless
Foundation health data innovation fellow.

How many of you actually went to the recent Health Datapalooza? For those of
you who didn’t go, it was a spectacular success (applause) thanks to
extraordinary work by many people in this room and many people outside this
room. I just can’t say on behalf of everyone who cares about health data and
its ability to help people, I can’t say thank you enough. It was just an
unbelievable thing.

Just two and a quarter years ago, the whole health data industry got started
when the Institute of Medicine convened basically 40 people in a room and said
what about this idea of proactively liberating data and making it machine
readable, educate people that it is there and doing stuff with it. Basically
two and a quarter years later, Health Datapalooza 2012 gets thrown in the
Washington Convention Center, because it is the only venue large enough to hold
the awesomeness.

It was sponsored by 20 different organizations led by the Robert Wood
Johnson Foundation, the Institute of Medicine, the California HealthCare
Foundation and others. Sixteen hundred people converging for two days, to talk
about health data and how it could be used for good. It was incredible.
Speakers who include Secretary Sibelius, who gave a fantastic speech about the
innovation gap in health care and how data is critical in closing it.

Senator Bill Frist gave a passionate speech about the power of health data
to improve the care of patients. He spoke as a cardiac surgeon. He is doing
incredible work — he is genetic data — to help actually deliver better care
to folks. Thomas Goetz from Wired Magazine, a visionary tech guru. Jon Bon Jovi
was there, and he was there not as a bandy experience but because he actually,
from a personal experience he had.

He has this outfit in his home town in New Jersey called the Soul Kitchen.
It is a restaurant where you can actually get a hot meal, and pay whatever you
can. So if feel like you can pay five times, you do that, if you can’t pay
anything, you don’t pay anything. It is this wonderful, wonderful experiment,
which is actually going incredibly well. It is actually a testament to the fact
that people are actually fundamentally good. It is actually working really

He had an insight recently where there was a homeless person who couldn’t
afford to pay but wanted to work off his debt. And he noticed this person
worked harder than anybody else and he stayed late into the night washing
dishes and cleaning tables. And he learned that one of the reasons why was that
he didn’t have a place to sleep at night.

It occurred to him that that is a lot harder to find, a place to sleep at
night, than it should be. So he said what if there were an app that used open
data to help folks like Soul Kitchen find, like Open Table, that helps you find
a restaurant, find a warm bed to sleep in at night, find free health care at a
local clinic, find job counseling services.

And so in partnership with the VA he issued a challenge for people to do
that. And there are lots of government datasets that are available to help with
this. For example, we recently made downloadable the directory where all the
federally qualified health centers are. This is a great story. HUD, through its
network of funding and systems, actually makes data available, data
availability, at Home Starters. But it is actually made available very

But as a result of this challenge they decided to actually make it available
three times a day, updated in real time, spurred by this challenge. Which is a
wonderful example of how, if the supplier understands how it is going to be
used, they take action.

And so they weren’t sure what response we are going to get, but five teams
actually passed the threshold almost within nanoseconds to become finalists.
Because basically, the first five teams that passed the threshold of
acceptability by the judges became finalists. And they are all going to go to
Soul Kitchen and do a beta test in a week. And then the winner will be promoted
by Jon Bon Jovi, and the Soul Kitchen, and be available nationally.

So Jon Bon Jovi came. There is this wonderful moment where he starts
speaking from a script. And then he finally said, look, I don’t have to read
this to tell you why I’m here. And he talked about his experience with this
homeless man and his passion for this project. It was fantastic. It was
wonderful to see a guy like that use his fame for a really good purpose, and it
is going to help a lot of people in combination with our open data. So that was
just awesome.

DR. SUAREZ: Where is the next one going to be, at the Washington Mall?

MR. PARK: Fed Ex Field. We’ll see. By the way, 242 different companies and
non-profits competed in an American Idol style process for the right to present
their product or service or program, powered by open data, at this Datapalooza.
Competed. I do a lot of meet-ups and hackathons. So I think I know virtually
everyone who is doing work in this space.

I looked at the list of 242 and I read the dossiers, and I hadn’t heard of
most of them. I said who are you? Where did you come from? I looked at the
founding dates of the organizations. They were like 2012, 2012, 2012, 2011,
2011, 2011.

And one of the best conversations was, we brought in two ER students from
Johns Hopkins who built this thing called Symcat, that basically leverages a
ton of our data to help you assess your symptoms and actually determine whether
you really need to get help urgently, and where to best get that help and even
book an appointment for you ultimately.

The best conversation was between Steve Cohen and these students. Steve
started asking questions I didn’t even understand, about did you adjust for the
yada yada, because of course the underlying bias of the data is X. And the kids
said absolutely, in fact we did this. He said, hmm, very nice.

So I thought that was great. So in a dialog between Steve, the data
supplier, and these brilliant students that actually understood what the heck
he was saying, which I didn’t. I thought that was great, I thought that was
just really terrific. That was very exciting.

And actually we are already planning Palooza Four. We haven’t set the date
yet. We are trying to figure out when Fed Ex Field is available. But long story
short, it is probably going to be the last week of June, 2013. So don’t plan
any vacations that week, unless you are planning a week-long vacation in
Datapalooza Land. But that should be very exciting.

I will send you an e-mail. We all got tons of e-mail after the event, but
people were saying it was the most profound professional experience of their
life, that they actually will have something ready to show for 2013, they are
going to tell all their most talented friends to build something for 2013, and
that they have never been in a place that was so inspiring.

This is a health data meeting. This is what we are talking about. It is
magical. Data can improve lives in lots of ways, and there is a whole community
that is out of control at this point, in a really good way, that is building
stuff that is magical, using data. So thank you for all of your support. And we
are going to ask for your support for 2013.

One sub-phenomenon within the Palooza that I wanted to be sure to highlight
is that the health data movement is metastasizing in a really good way. So just
a couple of examples of this. It used to be the case that HHS was really kind
of the sparker of the hackathons that were happening, these codeathons, where
people get together and work on health data.

Now what is happening is, people are convening these hackathons, and we get
invited. We just show up. We didn’t have anything to do with it, but we are
happy to witness the awesomeness of the other. I just want to talk about two
examples. One is, Paul had this brilliant idea. I think actually Paul and Palo
Alto Medical Foundation are the first medical group to ever hold a hackathon.
So I think they should be in the Guinness Book of World Records or something as
the first medical group hackathon sponsors.

Paul said yes, I am really passionate about the whole idea of having us
sponsor a hackathon and challenge around using data to help folks successfully
age, help with the process of successful aging, because that is a phenomenally
important issue that we are going to have to grapple with as folks responsible
for the health of seniors. I said that sounds fantastic. I was expecting to
show up at a hackathon a couple of minutes later with 10 doctors, maybe 10
nurses, maybe five developers and it would be great.

I show up in this cavernous room with 400 people in it. It was an incredibly
elaborate set of presentations and inspiring calls to action. And then a whole
ideathon over the course of a day and a half, sponsored by the Palo Alto
Medical Foundation within a three-month development challenge. All around
basically building to a Link Ages platform, pun intended, that helps elders
connect with each other and with their doctor, and leverages the power of data
to actually age well at home. Which is just fantastic.

Then another example — did I tell you all last time, had we done the Cajun
Codeathon yet? Did I talk about the Cajun Codeathon? Does that ring a bell?
Another example is, I was in the state of Louisiana at the invitation of the
state government, talking about health data liberation. And I was talking to a
group of people. I wasn’t sure where I was going, exactly.

And then this guy stands up, Ramesh Kolluru. He stands up and says I am very
excited that I am going to convene a health data codeathon in Lafayette,
Louisiana, in four or five months, and I would like you to come. And I said,
that sounds fantastic, I will be there. And I just kind of keep it to myself
for awhile.

I find myself four and a half months later, flying into Baton Rouge, driving
in Louisiana, and Ramesh has convened this unbelievable hackathon. 300 people
flew in from 18 states, including as far away as Germany, to compete in a
codeathon that used open data from the federal government, from the state
government, Louisiana actually had recently made available for precisely the
codeathon and other sources, to help build solutions that could help fight
childhood obesity.

Ramesh told me that when he got the registration from the kid from Germany
he was actually really worried. He actually contacted the kid from Germany and
said, you do realize you have to fly to Lafayette, Louisiana and physically be
here to compete in the codeathon?

And the kid said that, I realize that. I am getting a one-way ticket. My
dream is to come to America, come to your city, win the codeathon, start a
company, and build a business that does good in the United States. And so the
codeathon was amazing. Secretary of State Bruce Greenstein was there, Lucas
Tramontozzi, who came to speak last time, was one of the brains behind the

And not only did they build awesome solutions, six companies, six start-ups,
were started out of the codeathon, including one that has as its newest member
a kid from Germany, who is living the 21st century version of the American
dream. And — at the same time, which is part of the dream.

So it is out of control at this point. We had nothing to do with Paul’s
codeathon. We had nothing to do with the Cajun codeathon. We just showed up.
And actually ONC provided a little bit of funding to Ramesh. It is really out
of control at this point, as manifested in another phenomenon as well, which is
that at the Datapalooza five regional collaboratives — Cincinnati, Louisville,
Massachusetts, Colorado, two other states and cities — announced that they
were starting health data initiative affiliates.

So they were going to organize on behalf of their communities, local health
data jams and datapaloozas on a recurring basis. And so they would bring people
across their communities together, brainstorm about what the issues were in the
healthcare system, brainstorm about what data was available and then build
solutions that would be showcased at a Denver Datapalooza, to help fight those
issues. And they would actually then continue to repeat that cycle of ideation,
problem identification, solution building, et cetera.

And our secret plan is to cross the American Idol dynamic with March
Madness, and have Denver versus Massachusetts and California versus — you can
see it happening, right? And so again, it is metastasizing. The health data
movement is metastasizing, which is a wonderful, wonderful, wonderful thing.

We also actually are making progress on creating a non-profit health data
consortium. So the health data consortium is an alliance of organizations led
by the Robert Wood Johnson Foundation, the Institute of Medicine, and others,
that through the Health Datapalooza. But they have concluded that they need to
create an actual non-profit organization to convene the Paloozas going forward,
and also to systematically promulgate education about open health data, how to
use it, and spur its use for good.

There is a consultant, Forum One, that is working with RWJF and the whole
consortium to actually create a strategy for this new nonprofit. There will be
a search for Executive Director that will start soon, and I am sure that all of
you will be asked for your ideas as to who a phenomenal founding Executive
Director should be.

Greg Daly wanted me to try to summarize the trends that we are seeing in
innovation, which is almost impossible, there is so much going on. So I might
just touch upon a few things, as evidenced by the paloozas.

Markedly improved search and finder tools for health care services, health
resources for consumers, much improved consumer tools, new applications being
built that actually utilize blue button data, the data you can download that is
your own data from the VA, Medicare, increasingly private sector organizations.

The first instances of actually people importing our data into other
platforms for developers to use. So Aetna launched a new platform called
CarePass, a new development platform called CarePass. It is open and available
and developed for free. Basically they ingested a bunch of our data, actually
put out a bunch of their data and commercial data.

In fact, they did a better job than we do ourselves of presenting our own
data in APIs that are usable and are making all this stuff available to
developers to then utilize to build tools and services for consumers. Which is
awesome. We love that, right? We love people to one up us and actually do a
better job presenting our data than we do, because all we care about is the
data being used to do good.

Very interesting mash-ups of EHR and Health Information Exchange data with
other data to power new tools. Continued growth of Cloud computing, Cloud-based
tools, increasingly good analytical software for population health, ACO
enablement, population segmentation. And –(?) 00:54:40 in timing to actually
help people avoid hospitalizations, ERs, et cetera. A very important kind of
analytical and intervention tool to have if you are a medical home, ACO health
home, bundled care team, et cetera.

So those are trends. And I am sure those of you who went to the Palooza
could name 18 others. But those are ones that we thought were notable, among
others. There is so much news. I am sorry for all this news, but I think this
is all an important context for your work.

Also — it has been an eventful time here — literally the same week, or
just before we rolled out the Health Datapalooza, the US CIO, Steven VanRoekel,
who is my partner, and I, rolled out a new Digital Government Strategy for the
US government. And one of the core tenets of the Digital Government Strategy is
that we said the default state of government data going forward in new systems
that are built will be open and machine readable. This is actually a fairly big
shift from where we have been in the past.

So OMB, which if you know the government is the all-powerful apparatus that
runs the government, is going to be issuing guidance soon and specifically
instructs agencies about how to do that, which will then show up in
procurements, it will show up in policies that then actually make this happen.
That will be for new systems development going forward, new development going

All agencies are also actually required to pick in the next 12 months two
high value datasets and to deploy web APIs to them, so super easy ways to
access them. And that is a minimum, and HHS is actually going to go way the
heck beyond that. And then there will a plan to then ultimately retrofit the
legacy infrastructure over time, so that the high value data is all exposed to
web APIs.

And all the new stuff is going to be exposed to web APIs, with metadata tags
and everything that you guys would absolutely endorse and love. But that is a
big, big shift for the US government, a big, big, big shift. And it will take
obviously time to fully wend its way through the vastness of the government. It
is a fantastic start and very, very exciting.

So I think those are the main updates that I had, as context. I just wanted
to tee up a few questions that the team had on which we could use your expert
advice. I am sure there are many other topics as well that you will come up
with, where we need your guidance.

One is, how to bridge the gap from early ideation prototyping to true
production testing or beta testing and scaling, particularly when what is
required is a live public health or health care environment in which to do so.
There is a bunch of stuff that if you are really serious you can’t really move
the ball forward iterating it, unless you actually can test it in an actual
hospital, in a doctor’s office, in an elder’s home, et cetera, in a public
health department.

So how does one address that problem? PAMF, addressed the problem by saying
the prize, I think the most awesome prize that you get if you win the PAMF
successful agent challenge, is you get to work for six months with the docs,
nurses and personnel at PAMF to really kind of get your groove on.

Incubators like Rock Health have established partnerships with Mayo, I think
Cincinnati Children’s, and other organizations, to actually do the same thing.
But is there potentially an idea like build a network, public health
departments, health systems, medical groups, where they don’t have to
contribute any money?

All they have to say is look, I am willing to be a lab. I am willing to have
folks come in here who have been screened, who aren’t just kind of yahoos with
a nutty idea. Well, at least the guys with a nutty idea who have actually built
it so you can actually check it out, a nutty idea like change the world. And
they just need a place to cross-check it, iterate it.

That could be a phenomenal — but other solutions as well. That is one ask,
is how do we bridge that gap between early ideation prototyping and beta
testing when it needs live health care environments.

Second is an extremely hot area, if you are trying to give advice to your
kids about where to go in the professional trajectory — health data analytics.
It is going to be massively, massively, massively, massively, massively hot.
And it is a function of the fact that we have a massive, massive, massive,
massive, massive shortage of it relative to emerging demand.

And so what do we do about that? A growing number of organizations, as you
know, are starting graduate programs in health data analytics. That is a good
start. But how do we scale the acquisition of expertise in health data
analytics, and there, just an idea. Because actually one of the things that we
are doing is, we love the health data initiative so much that as US CTO, with
the excited endorsement, the full endorsement of the President, we have
launched an open data initiatives program.

We are actually going to A, double down on health data initiatives. But B,
we are actually cloning. We have launched an education data initiative, we are
launching an energy data initiative, a safe data initiative where we are
liberating data from the vaults of government and other organizations to spur
entrepreneurship and innovation that improves education, safety, et cetera.

So I have actually begun to learn a lot more about education. And I now have
enormous sympathy for anyone who comes in learning about health care. Because I
now realize, wow, just how much there is to learn about any of these new
fields, going through disruptive change. But there is an enormous amount of
disruptive innovation happening in education.

For example, new, online universities and career training programs that at a
fraction of the cost of a conventional college, can actually teach you at your
own pace, in your own time, how to do stuff. So maybe it is more than just
creating new grad career programs stamped from the same mold, institutions.

Maybe it is those institutions potentially spreading their wings and saying
we are going to offer some kind of certificate program in health data
analytics, in multiple stages. I don’t know what it is. You all are the perfect
people, actually, to answer that question. But that is going to be a big, big
leap, I predict.

I predict, just based on my early empirical experience, the number one rate
limiting step, the number one bottleneck in the application of health data to
improve health is going to be health data analytical expertise. Number one. And
so how do we actually as a country solve that problem? Demand is not going to
be the problem. Supply is actually going to be the problem.

Then, the third question is, where do we need to place our bets in terms of
health data supply improvement? So where are you hearing that we need to
actually make improvements in timeliness, make improvements in granularity,
make improvements in accuracy, so on and so forth? What we want to do is be
very demand driven by that, so we don’t just want to blindly make investments.

But basically look at the social business cases. Where are the most
compelling social business cases? Where will the most social good happen?
Actually make data available, say, with a one-month lag as opposed to a
four-year lag? So we have already begun looking at a lot of feedback about it,
which is great. But getting your expert opinions, that would be incredibly

And one of the receptacles of that input of course is going to be the new
CMS Office of Information Products and Data Analytics. So at the last meeting
you were kind enough to vet that idea for us, and we were greatly heartened by
your yes response.

We took that back to the powers that be, and everyone all the way up through
the US Congress said Go, Bears, Go. And so now actually at Health Datapalooza
we announced the creation of Medicare’s new Office of Information Products and
Data Analytics, led by the incomparable Nile Brennan.

It is the first business unit in the history of CMS that is maniacally
dedicated solely to make data in CMS’s vaults more usable and accessible,
internally and externally, to advance health in America. It is just fantastic.
And the stuff that Nile is talking about doing, and the speed at which he is
talking about doing it — I don’t want to set the bar too high. It is

So he needs input from you. He has got an initial set of bets that he is
making based on a lot of feedback that he has already gotten. But where should
he go beyond that? That would be very, very exciting to get your input on. So I
am sure there are many other axes of value added from the workgroup, but those
are three that were top of mind from team HHS. And so we would love your help
and appreciate it so very much.

DR. CARR: We are absolutely excited. Can’t wait. It changes everything. And
we thank you, because you have changed everything.

MR. PARK: It is a whole group of folks.

DR. CARR: Don’t be modest. Your enthusiasm lights everyone up, and we are
very honored to be a part of this.

MR. PARK: I am so excited to be part of it with you, so excited and honored.
So thank you for everything that you have done, everything that you are going
to do. And you should know that the President of the United States is
personally very passionate about this.

I was at a dinner yesterday where he was explaining to a young developer the
whole notion of open data and how if anybody could pick up the data and turn it
into an application, that would actually help people. So he loves this. He was
very excited about it, and I look forward to keeping him apprised of progress.
Do we have time for questions?

MS. QUEEN: I have a question. Has the new digital government strategy been
released yet?

MR. PARK: It has. It is actually on the web. If you Google White House
digital government strategy you can actually find it and browse it. There are a
whole series of milestone — three, six, nine, 12 milestones. The OMB guidance
is going to come out in six months. But it is telegraphed, what it is going to

Essentially what it is going to say is, look, new systems development going
forward, the default state is going to be that the data needs to be in open
formats, it needs to be machine readable, it needs to basically be exposed
through web APIs, it needs to be appropriately documented with metadata tags.
And there is also a broader presumption of openness, which is actually
established by prior health documents around disclosure.

And then that will be encoded into procurement policy. We are even going to
talk to Congress and say in bills where you actually authorize the building of
new systems and the collection of new data, Congress will — this is what Steve
VanRoekel has been talking to Congress about. The idea is Congress would write
in saying, and you must make it — just in case it is not incredibly obvious
from the OMB guidance alone, you have to actually make this a format, make it
machine readable, expose it to APIs, et cetera.

So we hope it is actually going to be template language, not just in our own
internal Executive Branch stuff, but in bills as well.

DR. NICHOLS: Todd, what have you learned in your sojourn in education data
that might help us think creatively outside our box?

MR. PARK: Oh wow. So my sojourn in education data has been nine seconds
long. I am just a newbie, I am just a preschooler there.

DR. NICHOLS: Rumor has it you are a fast learner.

MR. PARK: I would say, interestingly, I think health care has a lot to teach
education. A lot to teach education. And I think they are actually behind where
health care is in a lot of ways. But the potential is equally large for data to
be able to tell people. I think where the most excitement is in education
around data in these early conversations, is around personalization of

So there are two dimensions kind of broadly to the education data issue we
launched. One is, the federal government is making its data available, machine
readable, and known. So for example, we have got massive databases of college
outcomes, higher institution outcomes, loan repayment rates, graduation rates,
starting salaries, et cetera.

The other axis, though, is something we are calling red button, which is
analogous to blue button except in this case it is not getting your own health
care data, it is actually getting your own student loan data, financial aid
data, student assessment data, transcript data, et cetera.

And what people are brainstorming about is, we did the play again where we
brought 40 people together, half tech, half ed experts, locked them in a room,
didn’t let them out until they actually — and we are going to do that again
more formally very, very soon.

But in the initial jam that we just did, people were very excited about the
idea of personalized learning, that based on your red button data fees and
based on data that is available, A, scholarship search, education, institution
search would be personalized, your whole learning pathway would be
personalized, learning pathways would be adaptive so you wouldn’t actually
force every kid to go through the same pathway.

This actually is a learning. They are thinking very expansively about what
data means. So it is both data about, say, higher education performance
metrics, which is similar to our health care — metrics. It is also actually
the personal data. But they also define an asset called Learning Registry as
part of their data resources.

Learning Registry is not a dataset. It is simply a growing network of online
web portals that have online education content. They have agreed to network
themselves together. And there is a set of standards called the common core
standards that have been promulgated in education.

Apparently it is a big deal to take your online education content and map it
to what these standards are. But it is actually an impossible task for any one
person to actually map all the online content to the core standards. And so
particularly in under-resourced schools, teachers just don’t have time to do

So what is happening is Learning Registry Network essentially enables anyone
to attach a metadata tag to a piece of content. It says this is an Algebra II
content chunk. And then everyone else across the network can choose to use that
metadata tag. And so it crowd sources a cataloguing of the entire smorgasbord
of online content. But it does so in a way that you can choose your own
adventure, you can choose to accept the tag or not.

So it is a kind of interesting data quality check where multiple people
could tag something, and you can choose to trust it or not, if that makes
sense. It is very interesting. But they say the learning registry is just as
important an asset as red button, which is just as important an asset as the
data sitting in the vaults of the government.

And they have also actually added to the education initiative
interoperability of school data, which is very interesting. Actually one open
issue for this workgroup is, we actually have started with community health
data, and then it kind of expanded to provider quality data, and then it kind
of added, added, added. And now I think the newest dataset we need to add is
the data sitting in EHRs.

To have a health data initiative that talks about the innovative use of
liquid open health data without talking about the data EHRs, is leaving value
on the table. And talking about how that data can be used for good while
protecting privacy. So I think that is an interesting issue to grapple with. Ed
is starting there. They are starting with we have to actually have
interoperable school data be part of the raw material that we consider from the
very beginning in the education data initiative.

MS. KLOSS: Is this kind of innovative initiative going on in other

MR. PARK: So part of what happened at Health Datapalooza week was the United
Kingdom sent a delegation led by their equivalent of Secretary Sebelius,
Minister Lansley, to immerse themselves in the Health Datapalooza. They wanted
to learn how to basically import the paloozaness to the UK. And then we had a
discussion about it afterwards and they were very, very excited about it.

They have actually deployed a portal called NHS Choices. It has a lot of
health content in it, and they have a whole series of APIs that they have made
available. They have also actually led the way in a lot of ways of making
provider quality information available.

But their insight was that making data available is a necessary but
insufficient condition. That was their key takeaway. Our key learning was, if
you just make data available but nobody knows it is there, then really not a
lot of excitingness is going to happen.

But if you actually think to yourself, it is not the data liberated that is
the outcome, it is actually beneficial change in the life of the public that is
the outcome, you work backwards from there and you say, well what you really
have to do is catalyze an ecosystem of innovators, an ecosystem of innovation
that uses continually improving data supply, with a continuous conversation
happening between the users and the suppliers to deliver that benefit.

And so they are excited about palooza-ing, and so that was very interesting.
There are others who are actually very interested in learning about this
elsewhere. I think we are actually on the leading edge of this as a country.

DR. SUAREZ: Very exciting stuff. One of the interesting things that came out
of the Datapalooza, and this whole concept of liberating data, is the balance,
particularly — there is data that needs to be liberated, there is data that
has to be liberated, and then there is data that has to be very carefully
considered about being liberated.

MR. PARK: Particularly when it comes to privacy.

DR. SUAREZ: When it comes to privacy of health information and EHRs. And one
of the observations that some of us actually from the Committee had — and I
know Larry is not here but he and I were sitting next to each other at some of
the presentations — was that in the excitement that is generated out of the
idea of liberating data, there is some loose approaches and perceptions of how
critical protecting the information appropriately needs to also be considered.

And some of the people that were even on the stage, were out of excitement
talking about how accessing these electronic health records here and there, it
created the sense that EHRs were to be liberated as well. And having the word
EHR and liberation in the same sentence created a little bit of concern.

Having the CDC data from surveys and government data and all this, and
liberation in the same sentence is actually a requirement in the Constitution.
But having in the same sentence EHR data and liberation creates a little bit of
a —

MR. PARK: I think that it is a fantastic point. And I think that one very
important purpose and mission of the health data initiative and the Health
Datapalooza and this workgroup would be advancing knowledge of how to actually
ensure access to data while protecting privacy. And I think we actually crossed
that Rubicon already when we added blue button to the health data initiative.

What we have actually said, and we I think all reinforce this continuously,
and basically anyone who works in health care, once they get close enough to
start working in a live fire exercise, they get inculcated in it. There is a
big difference between fully open data and controlled access data.

The way that we think about data at HHS is that there is fully open data,
which is data that is completely non-personal, you can’t possibly re-identify
anybody from it. It is like hospital quality metrics, or FDA product recalls,
or the latest asthma management information from National Library of Medicine.

That you can make available to anybody, without constraint. No problem. Then
there is actually the controlled access bucket, which you cannot because that
has privacy implications. But critically you can liberate that data. It just
means something different. It means you can liberate it so that the person
whose data it is can get it.

So the patient data advocacy movement has been taking up the management of
data liberation. What they mean is, not that everyone else in the universe
should get their data but they should be entitled to a copy of their own data.
That is what we mean by controlled access. Blue button data is not available.
You or I can’t go get Mrs. Jones’ data. Mrs. Jones can. And Mrs. Jones should
be able to get her data.

That has been truly the obvious thing to everyone. The space where I think
education is really required is the space in between. I think that frankly EHR
data, everyone will intuitively or will come to understand once they start to
actually try to do stuff, that that is equivalent to blue button data. You can
only get access to it if you are authorized to get access to it in the course
of clinical events.

So I am actually less worried about that. The part that I think is the part
that we need to be very vigilant about is the gray area in between personally
identifiable data, which is obviously under privacy, and the stuff that is
either aggregated or just non-personal in nature. It is stuff that is actually
person level, but that has been de-identified.

And so the position that we have actually taken is that that is not ever
going to be fully open data, because of the mosaic effect, and because of the
problem that basically even if it has actually been de-identified, as this
group well knows, if you have access to other data that is publicly available
on the internet, you could re-identify those people fairly exactly.

So I think it is the responsibility of suppliers like us to say we are not
going to publish a link to de-identified Medicare claims set on healthdata.gov,
for anyone to get. We are only going to make it available to particular parties
who apply for, who are qualified for, and who sign legal agreements that say
that if they violate the terms of the agreement, make public Mrs. Jones’
identity and history of depression over the Internet, they are going to go to

They will pay massive fines, they will never get data from anyone ever again
and face massive penalties. I think it is incumbent upon us as suppliers to
essentially understand that and make the data available on those terms. I think
it speaks to a broader point, which is that I think the Health Datapalooza is a
wonderful opportunity to effectively do continuing data education.

So Josh Rosenthal basically taught a graduate level class on how to turn
data into different information. People said, including people who are very
hard bitten — conference-goers, they said it was the single best session they
had ever attended at any conference. Actually, people started writing us and
saying you should offer continuing medical education for several sessions of
the conference.

So I think that — and we had a privacy track at the conference — but I
think actually making it an opportunity, not just to recruit people in the
ecosystem, but to actually have them all get a one on one level of education.
And then why restrict it to the Datapalooza? Why not actually have on line
courses about it, that you can actually access at healthdata.gov? So anyone
can. We are putting all the sessions that we videoed on line.

Many, many more people are going to witness the power of the Palooza after
the fact that weren’t there in person. We actually easily could have had a lot
more people there. We had to turn them away because of the fire marshals. But
regardless, even more people who just learn about it than you know about.

So I think that is another interesting thing, and that would be an
interesting recommendation — hint, hint — for a committee that cares about
this kind of thing, which has a workgroup that might be interested in this kind
of thing, to recommend. Saying you should create online curricula about issues
like privacy, about issues like how to turn it into information, et cetera. And
make that available for developers and interested innovators to scrub into.

Any other questions? Thanks so much again. I can’t wait to work with you, we
all can’t wait to work with you and we will keep working with you. We will work
with the new workgroup. Words can’t express how thrilled we are so I am going
to stop trying to express it in words. Thank you so much again.

DR. CARR: We will try to express it in actions.

MR. PARK: Fantastic. That is the best way. Thank you everybody.


MS. GREENBERG: I just wanted to share with you all, obviously this
stimulated lots of thoughts. But I am so excited about this emphasis on data
analytics and training, or offering training for people to use the data. This
is something NCHS used to do some of years ago, really when we had the
cooperative health statistics program, which some of you are old enough to

We lost the funding and the support for it, et cetera. It is just so
incredibly important and so needed, and the fact that this open government is
really stimulating the recognition for that and hopefully addressing it, to me
is really, really rewarding.

DR. CARR: The thing that is so striking is the shortening of thought to
action time. We can, in our traditional — not just us but the traditional mode
— deliberate extensively on a letter about privacy or, like Josh, you could
just have an online course and demonstrate to people in this situation I am
talking about this, in that situation not so much.

I think that is the transformative thing, even as I think about the letters
we have been working on this morning. It is sort of changing the paradigm. And
I love what he said, which is the endpoint is the change and enhancement in the
community, and everything else is necessary but not sufficient if we don’t get
to that endpoint. So very, very exciting, speechless.

With that, Paul —

Agenda Item: Quality Letter, Consumers’ Decision
Making – Action (resumed)

DR. TANG: What I am going to say just changed, because I am going to be very
bold in terms of this is a letter in terms of personalizing health choices,
period. And what we are trying to do is to leverage the situation we have right
this moment to start that change with the insurance exchanges as well as the
other things that are in ACA.

It doesn’t depend on ACA, but it is a moment of opportunity. And so it
really dovetails with what Todd said. Our goal in the end is to make available
the open data that allows tools to be built to personalize health choices. If
you don’t get that out of this letter, let me know.

DR. CARR: Can I just add one other thought? I thought what you were going to
say is, the disruptive information that we have gotten today is that as we are
contemplating this, other things are already happening, as we heard this
morning. But I think the integrative concept is, the piloting. That yes, we
have this on line, that on line, all these things we can find on the web. Is it
doing what it is intended to do?

DR. TANG: That is it. We embellished the preamble on page one to say —

DR. CARR: Do we have copies for everyone at the table? Our Workgroup

DR. TANG: Yes. So the change that you see in the first paragraph at the end
is basically to say, the department can take actions to improve the usefulness
of consumer-oriented costs and quality information, period. And that is without
regard to what coverage they have. The reason we are mentioning health
insurance exchanges is because it gives us an immediate opportunity to apply
these recommendations. And that is the sole purpose of that first preamble.

Then on page two there is a whole new paragraph that really encompasses,
incorporates a lot of the feedback we had yesterday. One is to explain the same
thing, which is we focus on the health insurance exchange only because it is an
immediate opportunity, that as we already know, the government is already
rolling out proposed and final regulations related to ACA.

In the proposal are some things related to the insurance exchanges. In the
things that are already final are regulations that cover all insurers, in terms
of what they need to disclose and in what format. We are going to take that a
step further in saying it is not just disclosure about benefit plans, but
really to personalize it to an individual. So that is the main thrust about
what we are saying.

And according to Bill, we see this immediate opportunity, but there are
other opportunities where the federal government does control information such
as the FEHBP. And reinforcing, at the end, it says really the majority of
recommendations apply across the board with or without ACA, with or without
federal involvement in insurance. So that is the set-up.

Then in the recommendations, what we changed was on the bottom of page three
in recommendation set two. We talked more about it is really for consumers, and
how we started out. So the nutrition style labeling, we realized that we
actually couldn’t reduce all of insurance to the soup can, but that we could,
say, for the most common 30 services and procedures. So that there is some
comparability, price it out across all of the options that are offered. That is
recommendation part A.

Part B is to empower consumers, just what Todd was saying, so really we
would have a developer challenge for an app that would personalize, if I am a
woman thinking about getting pregnant, what is my benefit coverage and what is
my out of pocket coverage, the cost to me, so on and so forth. So those are the
two parts of that recommendation, in a sense.

Going on to page four, we acknowledged that even though there are health
insurance, a network of providers, all that matters to me is what is in my
geography. So that is why we added the geographically specific information. We
emphasized in C that we want to already take advantage of what exists.
Providers have to give all kinds of reports to the federal government, in-state
governments, take that and make it usable and palatable to consumers.

In recommendation set three, what we did, I think, is change the order. And
in our final comments we once again tried to emphasize the message that right
now it really goes to the flying blind comment. Right now, regardless of what
information may or may not be available, consumers do not feel they can make
intelligent choices from plan, provider or treatment options.

And we are trying to set out on a path to correct that, and trying to
capitalize on the first opportunity, which is provisions of ACA, whether it has
to do with insurance exchanges or insurance regulations. So that is the end of
the story.

Hopefully we captured the feedback that you gave us yesterday, and totally
open it up. Any other subcommittee members want to add to that recap of our

DR. COHEN: The only thing I want to add is, I really like the last line. The
bottom line is, helping consumers to make meaningful decisions about their
health is essential to improving the health system. And that is the bottom

DR. TANG: That is how we are interpreting the mission of the quality
subcommittee of NCVHS.

DR. CARR: One question I have. I am playing with healthcareinsurance.us,
which is something else, that Todd just mentioned. That is not quite what we
are doing. I am just trying to make sure that we don’t sound irrelevant,
especially where we have the workgroup. Do we want to say anything about that?

DR. TANG: I think that leverages what Jeanette brought to the attention of
the subcommittee, that they are already under — they, the insurance companies,
she represents AHIC — already are operating under final regs that prescribe
what information they have to be publishing across their plan. Presumably this
is the electronic manifestation of that.

So we, the subcommittee, felt this was a necessary and good step in the same
direction of full disclosure. But what patients were asking for, what consumers
and individuals were asking for, was, now tell me in my own terms how it
relates to me and my family. And that missing step is what our letter is trying
to address.

DR. CARR: Just to tell you what this looks like, you go to the page, you put
in your gender, date of birth, height, weight, smoker, student. Then your
spouse, same information, whether you have kids, if you are insured, who you
are insured with, when you want coverage to begin, do you take medications, do
you have pre-existing conditions. And then the next page, you give your
information and I guess someone calls you, or they send you what plans are
available out there.

MS. THORNTON: (off microphone)

DR. CARR: I realize. I am saying we have a growing number of initiatives
ongoing. We heard this morning from Jeanette about one thing, and Todd just
mentioned this app, which we were not aware of when we wrote the letter. So I
want to just take and tie, so that we don’t appear uninformed, particularly
about something that already exists. Does anybody see a need to also reference
this kind of thing?

Because it is directional. I think the point is, we are directionally going
in this direction, we are headed in this direction, but we are taking it one
more step. So I didn’t know if we should acknowledge this.

MS. KANAAN: I would just suggest that if you want to do that, you could
perhaps expand footnote five, where we reference the summary of benefits and
coverage. That would be a place to acknowledge something else too.

DR. TANG: I forgot to mention, this is on the bottom of page three. There is
a footnote. We were debating whether we would put it as a footnote or whether
we would put it in the body of the text. The thinking at the subcommittee is,
we certainly want technology but we don’t want to confuse the readers with the
fact that you wouldn’t want to walk away from this saying oh, we are already
doing this.

The fact is, it is directionally right and we completely support it. We just
think consumers, what we heard is, consumers are asking for more. They didn’t
want another table. They need the information. It is almost like the API. They
need the information in the table, but they have got to get it to where it
applies to them and their families. That is the point of our letter.

DR. CARR: My recommendation would be that we make reference to this as well.

DR. SUAREZ: I think this is great in the context of all the points that Todd
made. I think it is a very good setting. I think on the concluding comments,
the letter points out that there is a lack of available cost and quality
information for consumers. I think there are three things.

There is a lack of information, cost and quality. There is a lack of
understanding of what information consumers really want, in terms of cost and
quality. And whenever there is information — because there is information out
there — there is a lack of understanding of whether the way the information is
presented is useful, and usable by the consumer. I think those are the three
core elements that we are trying to be sure to address in the recommendations.

So perhaps not only add those three, or those other two elements, like we
recognize and we understand, or we see that there is, number one, a lack of
available cost and quality information for consumers. Number two, a lack of
understanding of what consumers really are looking for. And three, when some
information is available there is a lack of the measure of whether the way this
information is presented is usable and useful to the consumer.

I think if we tee it up that way, I think the recommendations follow nicely
then, because we are highlighting the need for addressing those three elements.

DR. TANG: Can you read the second sentence? That is where we tried to
incorporate that. It is not only the presence of the information, the second is
the presentation of the information that makes it usable, meaningful and
actionable. Basically I think it covers your three statements.

DR. SUAREZ: I’m sorry?

DR. TANG: The second. Just read the second sentence.

DR. SUAREZ: Yes. To stimulate the development and presentation of
information, yes. I think the question is whether there is a process for
understanding what is the information that is useful, what is the way, the most
effective way, to present that information to consumers as usable. So while
there is this unique opportunity to stimulate the development and presentation
of information, there is sort of a need for research and understanding.

DR. TANG: That is in our recommendations. We didn’t recapitulate everything
in our, quote, final comments. But that is in our recommendations, literally
all the words you said. So research on the process, user-centered design, and
on understanding what goes into their decision-making process. That is the
ethnography. And then how do you present. So it is all covered in the

DR. SUAREZ: It is all covered, yes. My suggestion was to actually tee it up
before the recommendations, to help frame the way the recommendations are
presented. And in the concluding comments, it can be restated or it can be
summarized, but starting with the recommendations based on these findings.

Basically the idea of highlighting we believe there are three areas where
there are concerns — lack of information, lack of understanding of what is the
information that consumers want, and lack of understanding of whether the
methods that are used when information is available, are usable and useful for
the consumer. So it is setting it up before the recommendations.

DR. TANG: I think we are in agreement, and I think it is also in the letter,
in the exact same places you suggested. It is in the preamble, then it is in
the findings, and then it is in the recommendations.

DR. SUAREZ: So I am not reading the letter, then.

DR. TANG: Perhaps.

DR. SUAREZ: All right, that’s good.

DR. CARR: Motion. Bill?

DR. W. SCANLON: I am not sure this would involve any change to the letter,
but I think we probably want to put on the record that what we are not
advocating is trying to promote information that creates adverse selection.
Your example of the person that is considering becoming pregnant is too
graphic, in the sense of, I am going to opt into this plan for a year and then
I am going to go to the cheaper one next year.

FEHBP actually had a problem like this about 30-some years ago. There was
some differential in benefits with respect to dental care and mental health,
and we did see movement sort of back and forth with people who needed those
services. The plans responded by creating much more uniform benefits over time.
So that is one potential response.

Another, in the context of the exchanges, we are going to have risk
adjustment and some pooling of funds, but that is within the context of the
exchanges. Regardless of those adaptive responses, we don’t want to be in the
position that we are saying. We want to arm the consumer to be able to help
them create some adverse selection for the plans.

DR. CARR: Yes, that is an important point. I think maybe that was not the
best choice. But I think when it comes to tiering of medications, if you have a
higher cost program, you may have more coverage of medications and that adds

DR. W. SCANLON: And those things are potentially much more permanent, and
much less a decision, in terms of a behavioral decision.

DR. TANG: I don’t think there was any implied policy in our recommendations.
We were trying to arm people with as much relevant information as possible. And
then actually what you describe was just the market working. And you ended up
with more of an insurance-like product. But at any rate, there wasn’t any
implied insurance —


MR. SOONTHORNSIMA: Maybe you implied it in the final comment when you talked
about lack of available cost and quality information for consumers, and Pete’s
attempt to yada yada ya. I think this is the right context. Maybe could we
expand a little bit better? Because at the end of the day it is up to
interpretation as well, on the part of the consumer. So we are assuming that by
providing all this data that is more comprehensive perhaps, assuming that they
will really understand it.

I wonder if we kind of — because at the end of the day when the consumer
selects whatever products, it could be because of the price first. And then
when you select the price, they may not fully — and you have talked about that
early on in the document. I wonder if we could just come back and remind in our
conclusion that this is not panacea either.

It is not just about quality. Oftentimes it is about cost, and then they
realize the quality could be impacted because they went for the cheapest. Or
the access could be narrowed because they went for the cheapest. So I am not
sure how you might want to ground that.

DR. TANG: So you are talking about educating the consumer on how —

MR. SOONTHORNSIMA: So it is more than just empowering them with information.
But how do we make sure that we are not neglecting the education?

DR. TANG: That is right. We did have a statement in number two, in the
preamble. We talked about the consumers having the ability to customize the
display to maximize their — and the word we used was value. Which I think is
getting toward what you are saying. Different people have different values, and
they are subjective. And we did talk somewhere else about training.

Actually it is in the one above. It is giving materials, and I think Todd
talked about it too — it is not that just liberating data is going to make
everything in the world better. We have to train consumers and professionals on
how to —

MR. SOONTHORNSIMA: And I wonder if we just recognized that. We don’t have to
solve it, but we are saying this is not a panacea. There is more awareness,
perhaps. It is not really education. It is awareness that there is a
significant difference.

DR. NICHOLS: Paul, if I can jump in. I take your point, and I do think it
was not only implicit, but explicit in the way we made our specific
recommendations. The language in the final comment, the lack of available cost,
we are just saying the absence of the data now is an imposition. And so we are
trying to remedy that.

And I think the reason we link cost and quality is precisely to set up the
potential for a human being deciding a calibration there. But we are of the
opinion that mine will be different than yours, and that is okay. But right
now, there is no data. Not no data but not great data enough for people to even
begin to do the calibration. So making it available, we have got to believe
that is a good thing.

So I guess I want to know what specifically you want to add here, other than
this is necessary but not sufficient.

DR. TANG: It is possible it is just a couple of words. So in conclusion, the
lack of available cost and quality information and the ability for consumers to
understand it, impedes attempts to reform.

DR. NICHOLS: Understand is a little condescending. Lack of easily

DR. TANG: Lack of usable?

MR. QUINN: Or relevant.

DR. TANG: Relevant. Relevant solves the problem.

DR. NICHOLS: I think that is the key word here. There is a large amount of
data that is available. Some of it is very easy to understand, by some people.
A lot of it may not be penetrable by a lot of people, but for each person,
there is something relevant, or not. So I would rather we see a reference to
what is relevant to a particular consumer in helping them understand that.

It says bridging the gap between the data that we have and what each person
is going to find helpful or useful. Acknowledging that a lot of these decisions
are made for people already, in the products that are given to them, not that
they purchase.

DR. TANG: Would it be okay to add usable? So the lack of usable, comma,
relevant cost and quality information? Would that be okay? Because even if it
is relevant, it still has to be usable.


DR. TANG: Susan, did you get that?


DR. TANG: So the lack of usable, comma, relevant cost and quality

DR. NICHOLS: I think this is actually works better — relevant and usable.

DR. TANG: Fine. You can strike available, right?


MS. KANAAN: Yes, It is.

DR. CARR: I have a question about the appendices. The first one is the 2012
hearing agenda and questions for presenters. It makes sense. The second one is
the 2011 letter to the Secretary, with recommendations on quality. But actually
it was not just quality. It was prioritizing and funding, development of
measures that are meaningful to consumers. That wasn’t the title of it, but is
it referenced in the letter? I couldn’t find it?

MS. KANAAN: Yes, it was initially on page one. Maybe it got lost.

DR. CARR: I don’t know that we have to have it as an appendix, the previous

MS. KANAAN: Good point.

DR. TANG: Was that the one where we talked about the national coordinating
body for health?

DR. CARR: No. That was in my tenure, this was in yours. This is measures
that are meaningful to consumers, prioritize measures that are meaningful to

DR. TANG: That is what we held at NCHS, I think, right?

DR. CARR: Fund research and development of approved assessment of value of
health care based on measures that inform costs. Yes.

MS. KANAAN: So we are okay with deleting it?

DR. CARR: I don’t think we customarily attach our previous letters. It could
get cumbersome.

MS. KANAAN: It was initially referenced on page one and we took that out.

DR. CARR: So it is fine to attach the agenda.

DR. TANG: I think her point, Susan, is that we don’t label these as
appendices. These are just references, basically.

DR. CARR: Footnotes, yes. And then we also have an appendix of figure one,
user-centered design from NIST, guide to process approach for improving
usability of electronic health records. And again, why are we calling that out?
On mine, I have appendix three. There is a thing called Appendix Number Three,
Figure One, user centered design. At the end of the letter.

MR. QUINN: It is a footnote?

DR. CARR: It is not a footnote. It is right here under the Appendix.

PARTICIPANT: They are all footnotes.

MS. KANAAN: Footnote four, someone questioned, thought it was a term of art
that needed an explanation. So we added footnote four referencing the figure.
But do you not want to do that?

DR. CARR: No, if you go to the last page, under the signature, do you see
there are appendices? Why is Figure One, the second one — I am fine if you
want to attach the questions asked. But I am not even sure we need to do that.
Then the second thing is Figure One, user-centric. Are we attaching this
picture from NIST?


DR. CARR: Why this? Why?

MS. KANAAN: Because Matt suggested it.

DR. CARR: We heard about a lot of developments that we are not attaching.
And so if we think this is the single most, rises above all of them, we can
attach it. But if it is just —

MS. GREENBERG: Just a reference is probably fine. A URL or something.

DR. CARR: I just want uniformity, that we don’t over-emphasize one thing
over another, that sends a message that one has more importance. We have heard
about two very important developments today, and we have minimal reference to
them at all. So if there is a reason why this NIST figure needs to be part of
that, I am all ears. But if there is not, let’s be balanced.

DR. TANG: There is no reason that we wouldn’t want to emphasize it with the

DR. CARR: Then figure one comes out as an appendix. So now we are down to
one appendix, which are the questions. And we sometimes do that.

DR. TANG: I don’t even know that we need that.

DR. CARR: I don’t think so either. I think this is a letter that has
substance. And I think the appendices distract. So I would say take them all
out. Any other questions? Okay, with those changes, we can entertain a motion
to approve this letter.

MS. MILAM: So moved.


DR. CARR: Any discussion? All in favor, Committee members. (Aye) Anybody
opposed? (None) Anybody abstaining? (None) No opposed, no abstaining, all
passed unanimously

(Motion passed)


DR. CARR: It will be in the mail today, before one more development happens.
(laughter) Miraculously, we are ahead of schedule. Marjorie, would you like to
give the update on the NCHs National Data Conference? We will get that done,
and then when we come back we can focus on our committee report.

Agenda Item: NCVHS a NCHS National Data Conference,
Aug 7-8

MS. GREENBERG: Sure. I think many of you are aware of the fact that the
National Center for Health Statistics has held under different names
conferences, free conferences, for users of NCHS data and health data in

Our own Health Datapalooza, in a very 20th century way, for many, many
years, in which we, because it is free and because there are a lot of people
who really welcome the opportunity to learn about using NCHS data, we usually
have more than 1,000 participants.

Generally, for awhile, sometimes it has been every year and it has now been
every other year, and in light of new guidance in the department and in the
government about holding conferences, and we won’t go there, but I don’t know
when we will have another one. Literally. But we are having one this year in
August, on August 6, 7 and 8.

Because NCHS serves as the Executive Secretariat of this committee, we have,
wherever possible, have had some type of committee session to push out
information about, and share information about the committee’s work. We did
that two years ago and I think it was really around the 60th anniversary and
all of the information that came out of that.

I see some frowns. The dates are not known? August 6, 7 and 8. So of course
you are all invited, and everybody in the room and everybody on the webinar and
everybody on the phone is invited to come to this conference. The way it is
going to be this year is, Monday will be a learning institute, and work is in
progress to allow people as appropriate to get continuing learning credits, or
whatever that is. We have never done that before.

Exactly the details, if you are interested e-mail me, and I will send that
to Virginia Kane. She is working on it. But there will be continuing education
credits or whatever, available under CDC. Exactly how those will apply I am not
sure, but I just wanted to alert you to that.

There is a website. If you go to the NCHS website, all the sessions during
the learning institute, some are hands on. Actually working with, say, health
interview survey data, or national medical, ambulatory care data, whatever.
Others are more lecture style. Some are an hour and a half. Some are three

So it is, I think, really a great opportunity to advance this workforce
agenda, at least for NCHS data, that Todd was talking about. There will be an
hour and a half session on the ICD-10 code sets that Donna Pickett will be

And then the scientific sessions are on Tuesday and Wednesday, and of course
there will be some plenaries as well. And the Committee is going to be doing a
scientific session on Tuesday or Wednesday, whatever you preference was.

DR. CARR: I have a new preference, because if we are going to do our retreat
on the ninth, that would be a preference.

MS. GREENBERG: I think your preference was the seventh, and we may already
be locked in, but we can check that out.

DR. TANG: August seventh?

MS. GREENBERG: August seventh and eighth, and the retreat is August ninth.
So I think we had asked for August seventh, because that was Justine’s
preference. But now that we are having the retreat, which I assume will be in
the Metropolitan area.

This conference will be held at — it is a new hotel. Does anyone remember
where it is being held? It is in the Metropolitan area. It is all on the
website. We can see, if it is not too late to change it to the eighth, if you
prefer that. But it is an hour and a half session.

And what we decided to do was to highlight the community as a learning
system for health, using local data to improve local health. As I think
hopefully all of you know, thanks to the intervention or facilitation of Linda
Kloss, the e-health collaborative hosted a webinar, National E-Health
Collaborative, which is really the follow on to the American Health Information
Community, that was the predecessor to the ONC FACAs.

In any event, they hosted a webinar. I don’t remember the date exactly —
early June I think it was, or maybe it was May —

MS. KLOSS: May 23rd.

MS. GREENBERG: — in which the committee did a webinar on this report, the
community as a learning system for health. Given that it was our first webinar,
I think it was quite successful. And the National E-Health Collaborative is
very open to holding other webinars that present NCVHS information. NCHS, too.
They said anybody else as well that would be of interest to their wide group of

There were some good questions and answers provided. Linda Kloss, Larry
Green, and Susan Kanaan participated. People were very interested in hearing
about just how we had selected the communities and how we had gathered
information from them, and what the findings were, et cetera.

MS. KLOSS: And Justine.

MS. GREENBERG: Of course. Justine gave an overview about the committee, kind
of in general, and then they spoke about the others, as I mentioned, spoke
about the report. So thanks to Linda Kloss and others who commented and
participated. We have a good set of slides from that webinar, so I think we
will work from that.

Debbie Jackson, who facilitated all of this, including getting us a date
that everyone agreed to and participated and did it. It is like herding cats a
little bit, but we did it. And so thank you to Debbie and also working with the
National E-Health Collaborative. So I think that will be a takeoff from those
slides, but we will obviously have to work from that.

It is our understanding that the participants in this session, scientific
session, will be Justine, again, playing probably the same role as you did in
the webinar. Leslie Francis is doing the privacy piece. Linda, I think you
weren’t available and Leslie will be back by then in the country, et cetera.
And Walter. We are all so open and transparent here.

We learned late yesterday that Larry Green might be available, whereas we
thought he was not available. And Walter graciously being on the population
subcommittee and local, had offered to step in. So I think we will just have to
see where this is. I think we just have to take this off-line, because I didn’t
get a chance to talk to Larry and he has had to go over to HRQ now.

But let’s just assume right now, and I think if it has been announced that
is what it is going to be, it would be Justine and Leslie and Walter.

MS. QUEEN: Marjorie, it is going to be held at the Renaissance Hotel in DC.
And by the way, just so people know, SAMHSA is having their data user
conference. They have tagged it onto t he end of the week, the same week as
NCHS is, and the same location. It will be their national survey on drug use
and health and the other national surveys.

MS. GREENBERG: The same location?


MS. GREENBERG: Actually, the division of Health Interview Statistics is
holding a user’s conference on the health interview survey on the ninth at
NCHS. All of these are free. I don’t know about the SAMHSA one.

MS. QUEEN: It is.

MS. GREENBERG: All the NCHS ones are. So I think this is a good opportunity
for the committee to, as always, disseminate and communicate. This is one of
the areas, on the other hand, communication, dissemination, that we are trying
to emphasize this year. Linda has been helpful.

And now that we have our new working group members, I know they are going to
be incredibly helpful with this. This is more old time type of communication,
the conference, et cetera. I don’t think it is going to be online or anything
like that. But I don’t know if you will be able to tweet from it, or what.

MS. CROWLEY: Do you know if they are still looking for content for the

MS. GREENBERG: I think the content is pretty much wrapped up. Although
sometimes there are late breaking sessions that are made available. So let’s
never say it’s over till it’s over. But we are pretty far along now. I don’t
know that there is actually capacity for any additional sessions for plenaries.

There will be exhibits and posters. One of the emphases this year is student
posters. And there will be a competition for the best student posters. And so I
think that probably hasn’t closed yet.

DR. CARR: It is interesting how quickly life is changing. We just heard
about the Datapalooza and all the apps. And now I wonder what will happen to
posters in the future? Will they all turn into apps?

MS. GREENBERG: It could be. I don’t know. As I said, this is more
traditional, I think. But I can’t rule out the fact that we might also enter
the 21st century during this conference. So I don’t want to prejudge because I
haven’t heard of all the plans.

DR. CARR: Maybe we can find a new way to do our presentation. Rock and roll.

MS. GREENBERG: Yes, I do know that the posters, though — and there might
still be an opportunity for presenting posters or exhibits. That is my report.
Does anyone have any questions?

DR. MAYS: I just want to make one more suggestion, since you kind of have it
as a dog and pony show that you can take around. There is going to be the
Summit on Health Disparities, which will be here in DC and the end of October,
that the National Institute of Minority Health and Health Disparities is

They still are open. I think it is through the 29th before the abstracts are
due. But that would be a good group, because you would have a lot of the
community organizations usually attend that. Leslie Cooper, who isn’t here, I
think may be part of the program committee or something. So you may want to
talk with her. But you have kind of like a perfect opportunity to then hear
from the community.

MS. GREENBERG: Thank you. I should say that, please, and people have been
doing this but please continue to do it and do it more. If you are aware of any
kind of meeting where having, I know, copies, hard copies of reports are old
school also. But the fact is that when we put them out people grab them and
they are all gone. It happened at the NADO meeting.

And one of the things we heard at the NADO meeting was, we couldn’t believe
there were people there who would kind of like, oh, the committee is doing
that? People who we think are completely our constituency aren’t necessarily
aware of what we are doing. So if you know of any places where you think our
reports or anything, information about the committee, would be usefully
communicated, let Debbie Jackson know. She has kind of become our lead there.

And of course, as I said, I know the working group is going to offer us all
sorts of new suggestions for ways to communicate. In fact, can we make that
part of your agenda. You are the perfect group so that would be great.

PARTICIPANT: Marjorie, I have a comment I would like to make about that. At
the health data initiative we frankly didn’t have great participation of the
agencies in marketing their data. And I think we just got late to it, to get it
organized and so forth. But in light of your concerns about what is going to
happen in 2013 with your own conference.

MS. GREENBERG: There definitely won’t be one in 2013. The question is
whether there will be one in 2014.

PARTICIPANT: I just wonder if that also spills over to the HDI, whether
there are going to be concerns raised about having a conference every year on
that. What I am suggesting is that we have some conversation of figuring out
how we can have NCHS represented more strongly in our program as we plan it for
2013, and actually begin to have an apps and data fair kind of part of that

For those that were at the HDI, it is a very busy place and there are a lot
of conflicting things to do. But there were plenty of people who would have
been interested in going around and seeing the data products that all the
agencies produce and talking to knowledgeable people about them. And I would
say we are going to start the planning of Forum Four probably next month.

MS. GREENBERG: I do know NCHS exhibits at a lot of other meetings. Jim, did
you want to say anything about that?

DR. CRAVER: Thank you. Maybe we can follow up afterwards, off line. NCHS is
with Dr. Sondik’s leadership very much interested in gathering what CDC and
NCHS has available and is not listed on healthdata.gov. It is a very active
space internally. I will just say that.

And we are really hoping, as Todd referenced, to increase substantially the
amount of data and the amount of datasets and the available data tools that we
have already, to make sure that they are listed and available in an open
fashion in healthdata.gov and data.gov. So perhaps we can follow up offline.

MS. GREENBERG: Leveraging conferences that are existing is certainly a good

DR. CARR: Thank you, Marjorie, for the update. I just want to say we did a
quick query of people’s availability about an Executive Committee one-day
retreat. So that is the co-chairs of the subcommittees, myself, and then lead
staff. So the date that had the greatest availability was August ninth. I
think, Linda, you were the only one not available. Obviously we want to get the

MS. BERNSTEIN: Did you poll the lead staff?

DR. CARR: We are starting with the Committee members and then we are going
to go from there. But at the moment we had a number of dates out there, and
that was one where all but Linda, I think, said they were available. The next
step then, because Maia raises an important point. We have Leslie, I believe we
have Larry. We had not heard from Sally, and we have both Walter and Ob.

MS. BERNSTEIN: I just hadn’t seen it. You are not going to move it for the
lead staff if the members can come, but I just thought maybe I missed something
I was supposed to see.

DR. CARR: Lead staff were on the e-mail. I guess we had only heard back from
one of them.

MS. GREENBERG: The lead staff are definitely invited and welcomed, and the
liaisons, all of the liaisons, too.

DR. SUAREZ: It will be in DC?

MS. GREENBERG: It will be in the Metropolitan area. It is very likely. I
should just tell you, I think I mentioned it to the subcommittee I was meeting
with yesterday, but we will in the future, unless we get some type of
exception, we probably will be meeting in federal space. We are exploring
various — it doesn’t have to be HHS space, and we are exploring different
options and availability and all of that.

We will work with you and try to make sure that there are convenient hotels
and all of that. This is a new requirement in the government, and we will
certainly comply with it.

DR. SUAREZ: I suggest that in preparation for that meeting we do some
homework, both in terms of the agenda, as well as in terms of the expectations
from each of the subcommittees.

DR. CARR: That is why I am bringing it out before lunch, because you can
think about it over lunch. And when we come back this afternoon and we hear the
report outs from the Committee, it will be in part framing and codifying. We
have heard a lot of ideas.

DR. SUAREZ: Besides conceptually the work of the subcommittee or the
subcommittees, I think it is important to also have time to discuss the
Committee as a whole, and the concepts that we have been talking about, finding
improved, better, more effective and efficient ways to communicate, to get
together. To consider really the alternative opens of not just in person
meetings and things like that.

DR. CARR: So we have this afternoon as it turns out, from 1:15 to 2:45, and
we can incorporate a lot of this because it is basically report outs. I think
that gives us ample time.

MS. GREENBERG: Sallie is not able to participate. I think we will have at
least a teleconference.

DR. CARR: Yes, we will, ahead of time. But I would like to leave today with
the input of the other members as well.

MS. GREENBERG: Absolutely. We will try to get as much input from those who
can’t participate, as we can, before that, too.

DR. CARR: It is 12:15 pm. Let’s break for lunch.

(Luncheon recess was taken.)

A F T E R N O O N S E S S I O N (1:25 p.m.)

Agenda Item: Following up From Standards Actions,
Claims Attachment, and Plans for 2013

DR. CARR: Okay, our final stretch, the afternoon session of NCVHS is about
to reconvene. We will begin hearing from Standards, Action Plan.

DR. SUAREZ: Thank you. This is Walter Suarez, one of the co-chairs of the
Standards Subcommittee. We put together a few slides to talk about this. The
first three slides are basically our report on the work plan items, and some of
the next steps that we are taking. I have a few additional slides on claim
attachments. We thought it would be important to bring back this issue and talk
a little bit about what is going to be happening regarding that.

The first slide there is the work plan for this year. What have we
completed, what is in progress and what is coming up in the remainder of this
year. We have completed letters on claim attachments, Section 10109, and
Standards and Operating Rule Maintenance Process after the hearing that we had
late last year. And so those letters were submitted to the Secretary in March.
We also completed between March and now, the process for identifying and
recommending an Authoring Entity of Operating Rules for the remaining

We just held a one day hearing on various topics on Wednesday, and the
topics are listed there. We talked about 5010, D.0, 3.0, how things are going
with the first six months after implementation, the milestones for achieving
success of transition to ICD-10. The status of transitioning to the
implementation of Operating Rules for eligibility and claim status are due to
start January of 2013.

We heard from the DSMO. We also talked about three additional topics. Dental
coding issues, a series of interesting issues related to the development and
maintenance of dental coding. We also heard about Uniform Device Identifiers
and Administrative Transactions. Then we concluded our hearing with a very
important topic, and that is the approaches to the Affordable Care Act
requirement for Health Plan Compliance Certification.

Under the Affordable Care Act, Health Plans are required to certify that
they comply with all the standards and operating rules, starting next year, the
end of next year. So there is a question about what is the process for
certifying that compliance. HHS wanted to have NCVHS provide feedback into that
as they develop regulations regarding that.

We are in the process, and I will update you on the development of the
Strategy Protection 10109, in a minute. And the remaining activities for the
year, we need to complete the letters from the hearing that happened this week.
So we will be completing those letters between June and September, bringing
them back by September to the Full Committee. We are going to be preparing the
11th HIPAA Report to Congress. It is not going to be as comprehensive as the
10th Report, as we did. But we are going to put out an outline.

One of the points that I think that we had during the discussion of the 10th
HIPAA Report to Congress was that this might not be something that is only a
purview, certainly of the Standards Subcommittee, but something that is
engaging, or engages other subcommittees. So we are going to put together an
outline and share it with all the subcommittees for this, and look for a really
NCVHS HIPAA Report to Congress.

Last, we are really going to take advantage of the fact that we don’t have
any hearings or any additional reports, except for the HIPAA Report to Congress
between now and December. We are going to take advantage of that time to really
take a step back and a step up, if you will, to review sort of the larger and
longer term picture and strategy for our subcommittee for 2013 and beyond. So
really try and look at what are some of the mega-trends, if you will, in the
industry, that affect standards and standardization and try and focus on that.

So for 2013, we have a series of activities going on. Our schedule is to
have a hearing in the first part of the year. At this point it looks like it is
February, but we have not yet settled on a date or even a month yet, exactly.
This will be our second hearing on claim attachments at which we will be
hearing about the standards and then deciding on recommending standards for
claim attachments and operating rules, if there are any operating rules to be
evaluated and recommended.

Normally operating rules comes after the standard has been adopted but we
will see if there is some preliminary work done on operating rules,
particularly those related to structure and infrastructure and response times
and things like that. So that is the first item.

The second item is completing in 2013, we need to complete the process for
evaluating and recommending Operating Rules for the remaining transactions
outside of claim attachments. We have Operating Rules coming on health care
claim, enrollment/disenrollment, referrals, authorization, premium payment. And
that will happen in January through June of 2013.

Then we will be holding probably what would be a hearing, as we did this
month. Usually by the middle of the year we have a hearing to review the status
of implementation of all the standards. So we will hear again, how things are
going with 5010, with D.0, with ICD-10 planning, and see how things are

We will also hear about the implementation of the first round of Operating
Rules. By that time we will be in the six month timeframe. Then we will be
hearing on the transition, the preparation for Operating Rules for EFT,
electronic fund transfer, and remittance of EFT/ERA, which are due to start
January of 2014. So there will be six months before that June 2013 hearing.

We also receive our DSMO report that we get every year. We also expect to
prepare the Annual Report to Congress, which will be November of 2013. An
important point is the last bullet there. NCVHS might have a possible role as a
review committee, which is called upon in the Affordable Care Act.

The Affordable Care Act has a provision that says the Department of Health
and Human Services shall establish a review committee that may be NCVHS, to
perform the ongoing review of the implementation of Standards and Operating
Rules. It is certainly something that we have been doing.

HHS is to name that committee by January of 2014. The committee is to
convene hearings by April 2014. So there is a whole schedule of things, and
every other year hold hearings. Actually we are doing it every year, pretty
much, and listening to the industry about how things are going with each of the
transactions. So we are very well positioned to, if the decision is made by HHS
to name NCVHS as that review committee, to continue doing that work.

The key elements and the update from June, from the meeting we just had, not
the hearing but our subcommittee meeting yesterday. The first point is about
the Affordable Care Act, Section 10109. As we reported yesterday to the Full
Committee, the Subcommittee has been discussing what to do about 10109 and how
to proceed.

We thought of maybe convening or planning some target teams around these
topics. Or maybe saying let’s take a step back and look at the larger picture.
So far we have completed, and certainly that was a very valuable component, a
full hearing on each of the topics and prepared very detailed observations and
recommendations and submitted them to the Secretary. So we have done that step.

We also learned that CMS is developing a plan based on the letter and based
on their internal look at this area from the Affordable Care Act. They are
developing a plan and an approach, to how to address those topics and when to
address them, so to create that type of priority from their perspective.

So what we have decided to do, and this is for the committee to hear and
confirm basically, is that we will wait to hear back from CMS. We will consider
what we have done, which is completed this hearing in November, and submitted
this letter in March with detailed observations. We would consider that as
fulfilling at least the vast majority, if not the entire provision of the
Affordable Care Act with respect to this, and our role in providing that

And so we will wait to CMS to see what the plan and the approach will be,
and look for any opportunities that we can provide in terms of assisting the
implementation of that approach. So we are pretty much at this point
considering that we have completed that task on 10109. We are going to wait for

And then after that we are going to work with CMS to see when and where we
can play a role, if any, in the actual progression of the implementation of
10109 topics. So the other major discussion was defining a strategic plan and a
roadmap, and really the priority topics that we would want to focus on. This is
the concept of stepping back and really looking at the larger picture.

We heard yesterday from Rob, from CMS, how even CMS, it is doing exactly the
same thing. They are kind of stepping back and looking at the larger picture
and all these administrative standards, all the clinical standards, all the
quality requirements, all the things. And in the context of the new health
reform initiatives there are a lot of opportunities. So we are looking at
taking that opportunity as well, this time that we have to begin to create more
of a strategic plan.

Some of the topics that we have considered, certainly claim attachments is a
very high priority topic for us because of the upcoming activities. So we
expect that we will spend quite a bit of time not just with the subcommittee,
with also the full Committee in explaining and describing claim attachments. I
will do a few minutes of that next.

Health reform is a major topic, I think, that we wanted to look into, the
insurance exchanges and the ACOs and other forms, and the new paradigm for
administrative transactions, and whether we see that in the future there might
not be claims, or that claims are going to be completely different. And all
these eligibility and enrollment processes are going to be different with this
insurance exchange system. So that is a major, major topic to look into.

Public health data standards is another one. Certainly NCVHS, the National
Committee on Vital and Health Statistics, and the premier committee on public
health standards, we want to take a look at where the standards are with public
health. We wanted to try to do that later this year, but we are wrapping this
topic into the whole discussion of the larger picture.

We were even thinking of having a hearing later this year on public health
data standards. But rather than planning it, we are again going to take this
next six months to do this step back and step up, and look at all this topic.

The other one is bringing up this concept of the convergence of the
administrative and clinical standards, worlds. We are seeing that more and
more. I think with Rob’s comments yesterday from CMS emphasizing that as well,
and even adding quality standards, and trying to look at all the regulations
and laws that call for this — HIPAA, HITECH, the Affordable Care Act, others
— that is going to be another major area, the convergence of these two worlds,
if you will, or three worlds, depending on how you are looking.

And then the last one is this idea that Rob mentioned yesterday, working
with CMS to develop a national strategic plan to move standards forward. And so
those are some major initial topics that we are looking at.

The next step that we are going to be taking, we are going to begin
convening monthly conference calls of the subcommittee in between July and
December, we expect. And we are planning to actually hold a half-day, in person
subcommittee meeting, not a meeting, but actually we are going to spend an
entire half day the day before our September meeting.

A half day in the afternoon, because it happens to coincide with the
Standards Committee, the HIT Standards Committee. I am going to have to be
there first and then come back here or wherever we are going to meet. But we
wanted to have a half-day subcommittee meeting.

And we are going to be considering, out of the suggestions from Rob,
considering working with CMS to sponsor what we refer to as a listening session
regarding this strategic plan and the roadmap that Ob had mentioned, the
importance of really mapping and plotting all these elements and understanding
the timing and the relative significance and value.

Those are some of the next steps. Between now and September the priorities
are primarily completing the letters out of the hearing that we just completed,
and then beginning to get to the discussion around number one, claim
attachments, certainly. And then the larger picture, if you will. I think that
is it before getting to the next slide. I think the next slide is already on
the claim attachments.

So let me stop there, before we get into claim attachments. Ob, do you want
to add anything? Are there any questions or comments? Reactions from the full
committee on this plan?

DR. NAYS: Can you tell me what your focus will be in terms of the public
health data standards?

DR. SUAREZ: A great question, yes. So in the standards world we tend to
think of standards as standards for the message, content and the format, and
the transport, and the security mechanisms and all that, and vocabulary and
terminology standards that I use. And so those are the domains that we are
looking at in terms of public health data standards. What are the message
standards that are being used for submitting birth records and death records
and exchanging electronically those, as well as many other messages.

And then what are the coding standards as well. And more importantly, where
are they in terms of implementation in the industry and see what are some of
the barriers and all that. So that is one area that we are looking at in terms
of public health. Other questions?

DR. NICHOLS: So Walter, I was hoping you could elaborate a little more on
what you expect to get back from CMS that you are waiting on. Is that in
relation to 10109?

DR. SUAREZ: Yes. What we understand is that CMS received our letter in March
that had the observations from the hearing that we had in November about 10109
and all the topics. And they are developing a plan.

DR. NICHOLS: For CMS? Or for the country?

DR. SUAREZ: For CMS to support the possible standardization of some of these
areas, which will affect not just CMS.

DR. NICHOLS: So they are thinking beyond CMS’s boundary?


DR. NICHOLS: That is where I am headed. So you are confident that they share
your sense of urgency to get this done?


MS. DOO: What I am putting forward is what the items are and similar to what
Walter and Ob have been talking about, what was some of the low-hanging fruit
which made sense for CMS to put some effort behind, of getting groups together
to look at. Provider enrollment was one of the examples of what could we do.
But really where could we leverage that across the country, and where did it
make sense to put our resources to do something?

And then they added the claim edits because there was already an initiative
going on in both Medicare and Medicaid that the private sector was very
interested in, and providers in particular were very interested in. So should
we not leverage that?

And then what was the timeframe that we could take that on? So will it
happen in the next quarter or two? No. But what should we be doing, then,
probably in the 2013 period? So I am putting that forward for senior leadership
to consider.

DR. NICHOLS: Okay, great, I just want to make sure that CMS is thinking
beyond the boundaries of Medicare and Medicaid. Rumor has it that does occur
from time to time. Thank you.

DR. SUAREZ: So to emphasize the point that I meant earlier, at this point we
consider pretty much our job done with 10109. We are just going to wait for the
recommendations and the plan from CMS, and then re-engage.

DR. NICHOLS: I would like it if we wouldn’t say our job is done. I would
like it if we would say we had come to rest at this moment while we are

DR. SUAREZ: Give a break point, yes. Thank you. Any other questions?

DR. CARR: Walter, thank you, as always, for all the great work that you do.
I like the structure that you are putting in place to sort of have the standing
meeting for standards so that some of the things that we don’t get to in the
main timeframe, there is time to talk about. I think we saw a lot of engagement
yesterday from CMS. And I think this is going to be very helpful, so that they
will let us know.

DR. SUAREZ: The remaining slides, just to move to the next topic, is about
claim attachments. I really don’t want to spend a lot of time in the
background, because in three or four words one can summarize. Basically this
whole work started in the 1990s.

We actually held hearings in 1998, almost 14 years ago now, on claim
attachments. A lot of work was done in testing and developing the standard in
2001 through 2004. And then the final rule, we actually submitted letters to
the Secretary in March of 2004, 2005. And in September of 2005 the proposed
regulations were published. But then after that, and the next slide after that,
there were no other developments in terms of this regulation. The regulation
was very detailed.

These are some of the elements that the regulation defined as standard for
the administrative information containing a request and response message asking
for attachment information. The actual attachment information, the payload, the
content, the clinical information, the code set for specifying and for
specifically describing the type of attachment information that was being sent.
Code modifiers, too.

There is great detail. Defining the electronic health care claim attachment
transaction, the concept of a claim attachment. Prioritize what are the areas
where attachments and define the standard for those. Those these were the five
that were originally in the proposed rule. Clinical notes, rehab services,
ambulance, emergency department, lab results. Those were the elements in the
original regulation.

There were a number of other very, very critical elements that were defined
in the regulation proposed. One was the standard for transmitting the, as we
call it, the envelope or the vehicle for the transport of this message. And it
was defined in that original regulation as the X12N 277 for the request of a
claim attachment and the X12N 275 for the envelope for the response.

So in this case, for the first time we were bringing together a standard
development organization from the two worlds, if you will, the administrative
and the clinical. So the payload, the data content, the clinical message, was
defined in the HL7 standard, the HL7 message standard. That was the clinical

And then wrapping around was an envelope, as they call it, defined by the
X12N standard development organization, that allowed the routing and the
directing of the request and the response properly. It also defined a code set
at LOINC, a code set to describe and itemize the specific elements in the

It defined something very important, the variance of electronic attachment.
They defined two versions, something called a human decision variant.
Basically, a way to transmit data that is readable to the human. So someone can
open it in a window as a PDF file or a jpg picture, that is not coded
information but a scan element. That is a human decision component of an
attachment. So in many cases the attachment is just simply a wrapper with a
picture of the X-ray image of something.

And the other one was the computer decision variant, which was basically the
actual structure coded using SNOMED message content standards. And that can be
executed by the computer. So the computer can actually receive it. There are
ways to handle that inside a computer. And the computer can interact with that
transaction without human intervention.

There was another very important concept, which was the solicited versus
unsolicited attachment, very critical. What it means basically is that in a
number of cases, the rules of the road between providers and payers established
already that every time I am sending this type of message, this type of claim,
I know that payers always ask me for an attachment. So I had better send it
without having them solicit the attachment. That is the unsolicited submission
of an attachment.

And then the solicited is, I send a claim, the payer started the processing
and they said we need something else here. So they send me a solicitation, a
request for that attachment. And the rule basically said that unsolicited was
okay. Unsolicited was also certainly okay. So those were critical concepts that
are going to come back again once we look at this.

Just to finish up some of the background concepts, separating the
administrative information in the package from the clinical information. It is
very important to include a reassociation element so that the attachment, when
it comes after the fact of the claim, it can be linked to the claim in that
administrative data.

And there were some other things like the difference between electronic
claim data and electronic attachment data, the limitation on health plan
attachment requests. Basically the rule said you can only send one request for
a claim, not send one request and the claim attachment comes back and they say
well I need something else now, and then I need something else, and all those

And they dealt with, of course, the HIPAA privacy and how it applies and the
fact that it is still the minimum necessary applied, so you can only request
what is very basically the minimum needed necessary to do that. And then the
provider can respond only the minimum necessary, and those kinds of things.

So with the Affordable Care Act, the Affordable Care Act said basically that
we have to publish, that HHS has to publish the final regulation. So it
actually said the final rule has to be published, and adopt the standard claim
attachment and operating rules by January 1, 2014. The rules have to be
published by January 1, 2014. The compliance is two years after that, because
this is a new standard. And under HIPAA law from 1996, a new standard, the
industry gets two years to comply with.

NCVHS has been certainly and started to convene and we already convened one
hearing on claim attachments last year and made the initial set of
recommendations. And our timeline, as I explained, this is a quick summary.
This is about the Affordable Care Act calling for the rules to be published by
1/1/2014, and the industry compliance by 1/1/2016.

And then NCVHS roles, as I was explaining, on the timeline basically that we
have laid out, which is by early next year, by some time in quarter one of next
year, we will be receiving and having a hearing on claim attachments, listening
to the industry, the status of the standards, and then making our final
recommendations to HHS so that they can go start work on the development of the
regulations and publish them by January of 2014.

These are the last couple of slides, the critical part to bring up to the
Committee at this point. This is more about being mindful of this, have it in
the back of your minds. We will hopefully bring it to the front of your minds
later on as we begin to get into the details of this.

But really there are a few important considerations. Things like the
standard requirements will apply to all covered entities, including Medicare,
Medicaid, all the payers, all the providers, all the standards of claim

The requirement will apply to all electronic claim attachments, for which an
attachment specification has been created and approved, per the definition to
be adopted in the regulation. So there is a definition of what a claim would

It is important to know that not all attachments are claim attachments.
There are attachments used for other purposes outside of a claim. It is also
true that not all information that is needed in a claim attachment comes from
an EHR. There is other information that comes from other systems in the health
care organization, not just the EHR.

And there is a strong relationship and a need to align the standards for the
attachments with the standards adopted to exchange clinical information between
two providers, which is the same information. When the provider is referring a
patient to a specialist and they send an HL7 message with the summary of the
record, it is the same kind of information that is expected to be going in
these claim attachments.

And then a very important element is to make all the time the thought that
there is a content standard. It is also the standard of how the message gets
packaged, and the content is formatted and all that. And then there is the
transfer mechanism.

And we need to be mindful of separating the two. We don’t want to force by
virtue of adopting some standard a particular transport mechanism in terms of
an HIE way of doing business, or an NwHIN, or a direct or just kind of
different types of transfer mechanism. Those are some elements that we need to

The next one, the other, more business and policy issues to consider, are in
this slide. We are going to have to look at what is the recommendation for the
definitions and the applicability and the priority areas, very important
elements. And there is information in the industry that is gathered through
surveys and analyses of what are the current priorities.

Actually we started to hear that at the hearing last year, and realized that
the priorities back in 2005 when the proposed rule were published, are
different from the priorities now. We will have to deal again with solicited
versus unsolicited, with the human versus computer variance, again, with the
content approach for the submission of the request and the response, the
reassociation mechanism, the minimum necessary.

All these are the same element we are going to have to deal with. But some
newer elements that are going to have to be part of this are, one is the
authentication and digital signature of the content. Now in the package you are
going to be able to send information from several clinicians in the same

And there is some need to make sure that there is attestation or some way of
ensuring that the physicians are signing off each of those pieces of medical
information. There is certification that they are the person they say they are.

There is the transfer versus the content issue. Now it is more important
because of all these variations of transfer mechanism that exist. And then
there is this new thing called operating rules that are very critical to
helping us ensure that the implementation of the transaction is done well. So
we are going to have to look at that as well.

And then the very last slide, the next steps that we are going to be taking.
We are going to ensure that there is plenty of opportunity for the Subcommittee
on Standards to discuss the policy, the business, and the technical issues
associated with claim attachment. So again, as I mentioned, between now and
December we are going to have monthly calls, in some cases maybe even a couple
of calls in the same month.

And we are going to focus certain calls on discussing very specifically the
policy, the business and the technical issues. Because by the time we get
recommendations back, we are going to have to make a very important letter to
the Secretary saying here are the recommendations.

This is the definition we recommend to be adopted for a claim attachment.
And these are some of the priorities of the standard attachment that we think.
So there is a lot of policy. Not just technical decisions we have to decide on
and make recommendations on.

Ensure that the Subcommittee on Standards develops and uses evaluation
criteria to assess and reach consensus on the recommended standards. So as part
of this process we are going to have very deliberate, defined criteria to, once
we get the standard into the quarter one of next year, we can play the standard
against the criteria to see if it met the criteria, and if it can be
recommended as a standard.

And then finally, plan and convene the subcommittee meetings, as I mentioned
already. Several conferences to address these issues, and make sure that we all
have a very good understanding and are very well-positioned to receive this
information from the industry in the hearing in quarter one of next year. And
prepare us for dealing with all that information, and prepare the
recommendations. I will stop there.

DR. CARR: Thank you, Walter. Also I would bring to everyone’s attention the
letter that we sent after the last meeting that very clearly outlines many of
these issues and more, and the findings from the hearing.

What I would like to say about this, and it is the theme that is going
through everything that we are doing, in fact, now more than ever. With Todd’s
articulation of the new world and us trying to finish up work from 1995, it is
a very powerful juxtaposition to think about.

How do we do the work that is assigned to us? But really, how do we add
value in not just reporting this is what the industry says, but really how do
we marry up these, in some cases parallel processes?

I think yesterday actually, at the Standards Subcommittee, we had a lot of
words like convergence, coordination, communication. What were the themes? Five
C’s and three T’s. Here we go: Convergence, communication, collaboration,
complexity and coordination. And then on the T side: Transparency, testing,
timelines, and transition struggles.

And so I just think the role of the committees is to, yes, hear what is the
current state, and yes, meet these expectations. But we have got to be an
integrator in understanding, as we have talked about in the standards series,
the relevance of the various things that are left over to do, and the way we
could add value.

So I specifically thought this would be worth just talking about a little
bit in the committee, because it does have implications for quality, for
populations, for privacy. The claims attachment — an example of a claims
attachment is someone’s entire medical record, or their op note.

So for all the time we spend on parsing out which element in an EHR is
mashed or whatever, this is just the whole thing, sent along. So I think we
need to apply our privacy perspective to this, or at least make note of that.

Similarly, as we said yesterday, one in five PCPs, or physicians, have an
EHR, 50 percent of hospitals have attested to meaningful use. I would say one
in five meaningful use for the docs.

PARTICIPANT: One in five Medicare and Medicaid positions.

DR. CARR: Okay, well that is a lot of them. So one in five Medicare
positions. We are better than we were. So there is a lot of digital data that
comprised the medical record. Among those one in five are ones that are merely
paperless. So are we recapitulating an old universe that is redundant with the
emerging universe?

DR. COHEN: That is a great fundamental question, and it gets back to the
issue of where and how we add value. And really — and I have only been here
for a year, but I can see our niche as translating numbers and data into
actionable decision-making tools for individuals and for communities, and for

So strategic planning is very popular now in many contexts, and strategic
mapping. If we had to step back and define a specific mission and fill it out
with objectives, it would be in that space where we can really assist people to
make better decisions. I think we laid the groundwork with the work we have
done in the last year, in the Standards Committee, in the Quality Committee, in
the Population Committee. And I hear from the Privacy Committee some of the
hearings they have had.

This is a real window of opportunity for us to translate all the information
that is out there, create new information, but make it usable to the audiences
we want to reach, that nobody else, frankly, has focused on.

DR. NICHOLS: Justine, I love your opening to the broad discussion because in
my simple way, rephrasing it, you are telling us to skate where the puck is
going. So Walter, first of all I want your slides because I just learned more
from you about all this stuff than I have in probably two years of banging
around, listening to doctors complaining. So thank you very much. They really
would be helpful.

But I guess what was both exciting was how much I learned and how depressing
it is that the proposed rule was ’05. ACA passed in 2010. And declared that the
final rule be ready by 2014 and compliance 2016, with the proposed rule from
’05. So what I am trying to get to here is, there is a difference in standards
for claims adjustment, standardization of claims adjudication, which is what
the docs want.

So where I am getting to, where the puck is going? Are you free to make
recommendations that would lead to more standardization across claims
adjudication algorithms across companies? Or are we locked into just perfecting
the ’05 reg?

DR. SUAREZ: No, we are not locked at all in following the 2005 regs. We are
free of certainly making recommendations, again, at three levels — policy,
business and technical. Now getting into standardization of adjudication
processes and payment policies is not in many respects, in many cases,

Because each helpline is free to define how they pay claims. Not just how,
but which claims they pay, and which levels they pay it for and which services
they pay. All those things are policy payment decisions that are not what we
are trying to standardize.

What we are trying to standardize is the messaging, the interoperability
between helplines and providers, so that when a helpline says I need an
attachment in order to adjudicate this claim and they have the right to say so,
and the next helpline says well I never used that so I would never do that, and
that is fine.

But whenever someone asks for a claim attachment, we want to make sure that
the standard for that message is there, and that everybody follows the exact
same standard.

DR. NICHOLS: In the spirit of where the puck is going, I am asking the
question, are we not free to also think about reducing the variance, in the way
of a recommendation? Lord knows, ultimately somebody more powerful than us is
going to have to say you have got to do this. But my point is, that is what the
providers want, as I understand it. To minimize variance across —

DR. SUAREZ: Just to finish up what I am saying. Yes, we want to reduce the
variance and we want to reduce the number of instances when a claim attachment
is needed. There is nothing more inefficient, if you will, in the world.

DR. NICHOLS: The goal here is to reduce administrative costs across the
board for plans as well as providers. But I do think we have got to get to that
reducing the variance to accomplish that.

DR. SUAREZ: Absolutely.

DR. NICHOLS: I have seen heads nodding. Maybe I shouldn’t be as worried as I

DR. CARR: A couple of things. I know, Vickie, you are next in line. But it
looked like there were a couple of responses to Len. And then Lorraine, and
then Ob.

MS. DOO: I think you did get the answer. So what the claim attachment did in
2005, and Walter was explaining — so let’s say it was for the Emergency Room,
which I think ended up getting taken off the list. So these are the set of
things you can ask for in an Emergency Room attachment.

And that is the N. So everybody could only ask for those things. It was a
list of those that everyone agreed were the main things that were needed to
adjudicate Emergency Room claims. Same with the medications. Same with the
laboratory and those things. So it was getting to that consistency, if that is
what you were asking for.

DR. NICHOLS: That is part of it. But I think Ob knows there is another step.

MR. SOONTHORNSIMA: I think talking about things that are much broader, the
context is much broader. Because what other administrative nightmare, if you
want to use that, that exists today? And that is part of vetting, I think, that
the Committee has been going through, through all these hearings, even with the
claim attachment. Unfortunately I wasn’t here for that.

But you had different points of view. And I think we have to kind of look
across all these different opportunities. To your point, this is not guided by

DR. NICHOLS: It is pre-Civil War.

MR. SOONTHORNSIMA: But going forward, we want to hear about other
opportunities, administrative or otherwise. And that is a vetting process that
is going to take shape at a higher level, I think, because we cannot tackle
every single problem. So which one is going to pay, give us bigger payback? And
not to say claim attachment isn’t one of them. It certainly is an opportunity
for me to look at.

DR. NICHOLS: Linda is going to talk about what she talked about yesterday, I
hope. How do we get to assessing the accounting of which of these things are
the most important?

DR. CARR: Again, I am still struck by Todd’s presentation today, that there
are things that we deliberate about, make policy about, and now we are just
sort of doing things, sort of taking a step to change it up. We struggle with
all the information we need, and then we suddenly notice we have a whole closet
full of information that actually brings us 80 percent there.

Just that paradigm of, are we going to continue in this laborious way, or
are there things that we can begin to suggest that will get us to the finish
line? Because the measure of this is the finish line. And we have to focus on
the process. So now, let’s see, I have Vickie, and Bill, and Linda.

MS. KLOSS: I think claims attachments offers an opportunity to think perhaps
more broadly to how to explore that issue, to hear what the woe in the current
process are, probably aren’t as productive as looking outside our own box for
how that can happen, how it has happened in other industries.

From the provider perspective, and I certainly was part, through the
association, of the 1998 and the 2005 hearings, I can tell you there is a fair
amount of real terror with the additional administrative burden and complexity
of rules such as this. So I think it is one of these opportunities where we
have to make sure we are not doing more harm, while addressing the core
problem, at the same time that the technology in 2016 is going to be at such a
different level.

And thinking about those hearings as early as February, I think we need to
look at how we do that very differently.

DR. CARR: I think the other thing I know we have talked about is the payer
landscape, bundled payments, and the relevance of this level of detail. So we
know what the needs are today, and there is no denying that. But the amount of
investment made in the fixing of something that will come about in three years
when the need may have diminished, is the other piece that we need to pay
attention to.

DR. MAYS: I want to pick up two different things that were said. I am going
to agree with Len on this one. Your slides were phenomenal. I kept sitting here
seeing all these connections. It is the kind of thing you keep talking about,
and it’s like wow, I can see privacy, and I can see population.

But one of the things it made me think about is, what might be able to be
done in the strategic planning. And this is what you were starting to talk
about. And that is, if we had some kind of framework that when we develop
things we do this kind of environmental scan and say, now, after we do this,
even though we are satisfying the dots, how does this play out in terms of the
consumer? Is there any technology implication?

We should kind of come up with a set of things that we say for each thing we
develop, and either it then gets handed off to another group, or you keep it on
your plate and finish it off. Because I think that is what happens, is that
sometimes we have something and we satisfy a very small niche, and the rest of
the people would be very excited about it. And we just needed one or two more

So if we could have something where it is a scan, and in the strategic
planning it really is something that everybody’s products are subjected to
this. And I think it would just really — I think Justine has really been doing
a great job at getting us to be very coordinated. And I think if it goes in the
strategic planning about what each person does in terms of having a sign-off by
the other group, then I think it would be just fantastic.

DR. CARR: Thanks, Vickie. And I think it gets back to guiding principles.
Coming up on nine years, we go from very high altitude to very granular. It is
really in that 15,000 foot view where we are close enough to be relevant, but
not trying to micromanage. We are going to talk a little bit about our
executive subcommittee retreat, but getting those guiding principles about what
is the environmental scan.

I think that was brought home today. We heard about it in the Populations
Committee yesterday, how they learned a lot of things that they didn’t know
anything about. We heard two things today that we added to our just in time
letter in quality. And had we had an environmental scan, or had the right
inputs, we need to configure ourselves so that our liaisons and staff can
inform us so that we are not working on something that someone else is working

But I agree with that, sort of what is the pre-work that we do? And then
what is the appropriate level for this committee to do? And when do we hand
off? I like that idea. Paul?

DR. TANG: It might be dated, because I was going to react to what Linda was
saying — what is the technology going to be like in 2016? It is not the
technology. It is what is the payment system going to be like in 2016? So if we
— and maybe this leads into your next conversation — just like we did the
three P’s, what if we don’t have to predict what exact thing like ACO?

But what if we were taking care of a population? Then what standards, data,
measures, would we want? Maybe we would just literally leapfrog over there,
almost like the three P’s, the NHII thing we did a long time ago. The vision.
But we can go deeper. Last time we set vision. Well, wouldn’t it be nice if we
had data on people?

Now we could actually say there actually is a roadmap. Before we were
operating without the roadmap. Now, reform and the market has put a roadmap in
front of us. Let’s not only say what it would look like, but let’s go down
below that. That was a vision piece. Let’s go down to what is the new
standards, the new forms, even the new documentation. And what do we have to
codify in what form?

Do we chase it with the updated billing? Which won’t be relevant any more.
Or do we put in place — this goes back to the SNOMEDs. But all these things in
the same way can tie together. In the new world, though.

DR. SUAREZ: It has already been happening in some elements. For example, the
concept of enrollment to an insurance exchange, and the electronic standard to
be used to allow people to enroll in the insurance programs, to communicate
each other enrollment.

So the traditional way using an 834 X12N transaction, an X12N, the standard
development organization already started to discuss. So let’s see how that old
format, or that current — I shouldn’t say old — that current format, how does
that, it needs to be updated, modified, changed to allow for the new forms of
insurance exchange, and the new forms of enrollment processes?

MR. SCANLON: Along those lines, I think the Committee is very good at
pulling the various strings together and kind of making more, really looking at
what the vision could be. And I think periodically when we do that, it really
works out very well. It kind of gives you a way of proceeding, and a way of
deciding where to spend resources and where not to.

And at the same time, the Committee is very good at very detailed kinds of
recommendations that I don’t think any other committee, like the HIPAA
standards, for example, detail the technical complexity that virtually no other
advisory group provides us. But I think probably in the light of what seems to
be on the horizon, this idea of, again, all of these things converging, if we
could do it in a visual way, what are we trying to achieve and what are the

ONC did this a little bit in their strategic plan. What is the trajectory,
what are the elements, to get there? And you do it by ear, so you kind of see
what will come. But as Walter said, even for ACA, there is an interest on the
common application, the streamlined application, where presumably everybody
would use to enroll people in Medicaid and subsidies.

Which again, is not an X12, as far as I can tell, — maybe Lorraine, you
know if it is, but it relates to X12, a standard.

MS. DOO: For the health insurance exchanges we are look at X12. We are not
sure what is going to happen on a state level.

MR. SCANLON: Medicaid. This is like Medicaid and SCHIP and so on. But as you
say, there are a lot of pieces here. And again, everyone is so busy working on
the pieces and certainly we have been at HHS, it is nice to periodically say,
we are anywhere, and how are we getting there. And that is what the Committee,
I think, has always been — it all fits together, all of the subcommittees and
the new workgroup, this all fits together. It is the integrated nature of the

DR. SUAREZ: What we are going to do at the half–day session is a white
boarding exercise, a process of trying to put all those elements in a picture
together and try to map and create somewhat of a roadmap for that.

DR. CARR: I have Linda and Vickie and Marjorie.

MS. KLOSS: I really like the idea of getting high level on this, because it
so complex that I think to do it from the weeds up is complex. At the same
time, I am going to bring back the impassioned plea that we heard from Tammy
and others yesterday that there is real pain day by day that there may be
short-term fixes that we need to drive even more aggressively than we have.

And sending a stronger signal that we absolutely have to get rid of some of
the administrative burden and cost, in order to allow everybody to even move to
that next step. So let’s do that, but let’s understand that there may be some
breakthrough innovations that could really help now.

MS. GREENBERG: Yes, I agree with everyone. It just struck me, what we
started talking about two days ago and it seems to be kind of an underlying
theme of everything we have been talking about since, is this need to think
across the different silos, and particularly when it comes to clinical data,
administrative data, and public health data, and population health data.

And what we seem to be talking about now is sort of figuring out what
functionality is needed, as opposed to what form is needed. And then hopefully
form can follow function. But wherever the data comes from there is going to be
a need to exchange information. Even when we don’t have fee for service, if we
completely abolish fee for service payment and we all agree that is not going
to happen probably even by 2016 —

PARTICIPANT: I think the market will be a majority non fee for service.

MS. GREENBERG: It may be.

MR. NICHOLS: ’16? Have you been to Mississippi? No way. Keep going.

PARTICIPANT: Some states.

PARTICIPANT: We are already there in Massachusetts. I just want to say.

MS. GREENBERG: We can’t all move to Massachusetts and California.
Particularly Massachusetts, it is too small. But I think it is a fair
assumption that we are going to need to exchange information for a number of
purposes. Let me start with one that you won’t disagree with. And subsets of
information from electronic health records and from — or where they don’t
exist and we hope they will broadly, from some kind of medical records or some
type of administrative dataset or something.

Let’s start with public health. Public health will never get, and shouldn’t
get, everybody’s electronic health records. No matter what they think in New
York City sometimes — and even there they don’t, but there are questions,
obviously, about what should go to public health. But there will be a need for
exchange of information between records, clinical systems, however they are set
up, and public health.

And it might be for birth or death registration, it might be for
surveillance. We are going to be registering births and deaths. We are still
going to be doing some type of surveillance. It might be different but whether
it be surveillance by FDA, surveillance by a public health department, you name

So if we get away from this idea of the attachment to the claim, to the
bigger concept of exchanging information, and that is where we want it to be
standardization so that public health isn’t asking for one type of format and
one type of vocabulary or terminology, et cetera.

And health plans or those who are overseeing, if not in the same way through
fee for service but somehow overseeing the quality and otherwise of services
delivered, aren’t asking for it some other way, and across the board. So it
seems if we can think more about functionality and exchange of information.

And I would say that we should do that before we dive deep into public
health standards because we don’t want — and I, of course, am a lifelong
believer in standards for public health. But we don’t want to continue the
siloed approach. We are going to be exchanging information among these
different parties to our health system. And I think that is, in my mind, my
simple mind, it is the lens through which to look at the attachments issue.

DR. TANG: This is going to get out there. I am lucky I get 27 hours in a
day. But most people still are tethered by the 24. So in order to achieve what
you just said, Marjorie, we have got to get rid of the wasteful burden we have
today. The unifying, elegant solution, really the biggest bane of a provider’s
existence, is the documentation.

And it costs us in two ways. One, of course, is the time. But the other is,
so subsequently, the documents we do have no longer have the valuable
information because of the tools that have made — So we have actually
undermined some of the value of a record, and at wasteful cost.

Now if we for the moment just automatically took away that piece, we would
spend much more of our time productively in furthering the goals that we all
enjoy, that would be both for individual and public health. So the leapfrog is
to try to get there sooner than the piling on. Right now, we could pile on and
then sink the boat before we get it to float to a different destination.

I am just trying to think a little bit. It is the opportunity to sort of set
a different vision, and what are the implications of those visions that could
do the substitution rather than the pile on. That truly is the cry from the
front lines, and that we are beyond the reserve now. We have to do something
about that, to get to where we are going to go.

That is a bit of a plea in terms of if we wait and continue to pile on, just
because the old system is still here, we really can’t get to the new system.

DR. CARR: It just occurred to me, even as we think about these two worlds,
we are currently in a world of data that is coded data, by a set of rules. And
although that data is at times insufficiently detailed, it is predictable
because we have the coding guidelines. And we are moving now to very granular

But there are no rules. We don’t have that same kind of structure. And so I
am trying to think about, as we take from what is good, what we need, and we go
out into the new world. Because just today, if you take all the EHR data, it is
very hard. You could take that same data and draw many different conclusions
because you don’t know which docs document, which things, under what

And there is no middle layer of coders that are structuring everything to go
in the right spot. So it is just a plea for saying that just because it is
digital doesn’t mean it is more informative. So that is just one point.

My second point is, as we build toward action steps coming out of this
discussion, I think, going back to the environmental scan, the landscape of
what is going on, we have done a lot of this work in different ways. And
Walter, I know you have done a lot of work about what are all the things
converging at once.

But the HIPAA report on administrative simplification should be our roadmap.
We are responsible for reporting to Congress each year on the progress of
HIPAA, of administrative simplification and privacy. And it is not just what we
do. It is what is happening in the world, what are the opportunities that
remain. So my other point was to say, let’s not wait for the day before the
next meeting.

Let’s begin to collate what we have, to begin to make that big picture and
then work ourselves, our resources, to say what about this, what about that,
and make all those connections. Because we are farther than we think we are.

DR. COHEN: This has been a wonderful conversation and I hope we can continue
its momentum. I agree and disagree with one thing Marjorie said. I certainly
agree that we are talking about information exchange. But for me, the
information exchange is really the transaction. The outcome we are seeking is
better decisions. And we need to keep our eyes on the prize and not lose the

Although Jim is right. There is incredible expertise in this room and in
this committee about solving the technical details. But the prize really is
better decision making, for providers, for policy makers, for people who need
to make decisions.

How do we translate the depth and quantity of information that exists into
making, helping people, providers, consumers, make better decisions? That is
where we can make the contribution, through the synthesis and the understanding
of developing standards, through stepping back and saying what it is going to
look like in two years or four years.

And so, I think now, expanding our world view, we do have new challenges.
Todd gave us new challenges. We are focusing more and more about thinking about
the impact on communities defined in various ways. And I would like to see us
continue down this road. I am thinking several analogies. It is not a roadmap
any more. It is really a GPS system, to begin with.

And also, Paul, you reminded me of when health planning, when comprehensive
health planning, if any of you are old enough to remember that, began, CHPs,
the Comprehensive Health Planning agencies, before that evolved into the
SCHIPs, Comprehensive Health Planning agencies had two goals. One was to help
communities plan, and the other was to regulate through determination of need,
capital equipment, hospital expansion.

The agencies that survived were the ones that focused on long-term planning.
The ones that ultimately failed were the ones that focused on regulation. And
to me, it is a wonderful lesson. For us to really contribute our focus needs to
be on the planning, not on the regulation.

DR. SUAREZ: A very quick comment. To your question we should wait until the
next meeting — we are not. We already started. I mean literally, we already

DR. CARR: We, Standards. But I am including the we, everybody in the room
for sure.

DR. SUAREZ: Just one last comment, and this is very important I think. There
is the price, there is the process, and then there is the message. And the
message in terms of information. The price, we all have the same price. The
concept of keeping an eye on the price. Yes, we all want the same.

But there is going to be not just one way of achieving that. We have one way
of achieving that today called fee for service, and another thing evolving
called capitated. And there are going to be other ways with the insurance
exchange. So there are multiple processes to achieve the same price.

And then the message is the key element, in the sense that to ensure that
those processes achieve the price, we need to look at what is the message, what
is the standard that these processes need in order to achieve the price? And
that is why we need to keep an eye on the price, but we also keep an eye on the
various processes, and not just pool all our eggs in the basket of one process.

We know, and Linda mentioned it, we know that there are pressing needs today
of the current system, that if we can fix it while this system gets like this
in terms of the amount of volume, but still at this time and in the next two or
three years, that will be still a lot of money. We are going to need to work on
multiple timelines and multiple processes.

And that is what I want to make sure we don’t lose. We are going to be
keeping an eye on the process today, and the value and the need for doing
things today, as well as keeping an eye into the future.

DR. CARR: Well said. Let me just outline what we need to do in our remaining
40 minutes. We need to hear from Quality, Populations and Privacy. Twenty
minutes, we are finishing at 3:00. Even more pressing. I do want to hear from
that. And maybe I would ask that you incorporate, if there are some compelling
comments that need to be made to foreshorten our other report outs, that is
fine. Or can we move into the Committee reports?

Let’s hear from Quality then. And what I want to do is just a brief overview
of direction, and then I think we are focusing on the themes that we need to be
thinking about at this executive subcommittee retreat to shape the work that we
will begin anew in September.

So Paul? Where are we with what we are doing in Quality? And thoughts about
where we go from here.

Agenda Item: Other Subcommittee Report Outs

DR. TANG: As you know, we spent most of our time working on the letter. The
big question — and it relates to this last conversation — we have, is where
to go next. We could continue to talk about, quote, measures that matter to
individuals and consumers.

One of the thoughts Bruce raised is, do we try to go figure out how to
provide information for informed decision making by, for example, individuals
versus chasing measures? That would actually be a very different approach. In a
sense it is the spirit of the data initiative.

Can we use data in other ways besides making them a calculation, a
calculated metric to feed the informed decision making of consumers, of
providers? That was one of our thoughts we are going to talk about at our next
call. But I am interested if you think that would be a wrong direction. We have
been married to reporting calculations from data. Should we look at different
ways of using data?

DR. CARR: I think that ties in beautifully with our new data workgroup.
Because as we talked about today, if you are looking for your obstetrician and
you find one that has done 10 deliveries and one that has done 10,000, that is
a very important piece of information. I think that is a great link.

MS. JACKSON: The co-chairs asked me to provide some of the notes from the
very exciting subcommittee breakout. Thanks to the subcommittee and the staff
for the incredible letter, and using Todd’s words, I think that they are
tingling with ridiculous moments and excitement and joy at just how everything
has just turned, this whole meeting, from yesterday’s session based on the
department to Todd’s presentation and the quality.

The main point from their breakout was, they have gone beyond the collection
of data and telling stories. Now we have two simultaneous rivers flowing with
information, the two that we want to continue working on. This would be pretty
soon Populations, the Movie. (laughter) You never know. They are really

With the continued exploration of innovation and SES, or SEP, socio-economic
position, looking at the discussion this morning with the full Committee was
extremely helpful in elevating and pulling out that item that was in the bottom
conclusion and making that a recommendation, seeing that there are gaps in
analysis and data allocation and collection and analysis. They want to continue
with that.

And there is so much in that letter, thanks to Susan Queen and Vickie in
pulling this together, and Jackie Lucas. So they want to continue that
momentum, the convergence and confluence on that as one river.

The second one is our wonderful community health report which continues to
get notoriety and air play in webinars and various sessions. To explain,
exploration of the infrastructure necessary to promote, enable and sustain
communities as learning health systems. So again, there is a lot there to

They are both available, from what I understand, to participate in the
Executive Subcommittee Retreat, looking at that date. So we will look at that.
And Larry has filled out the template. He hasn’t shared it with me. I think he
did it electronically. Maybe he sent it to you. They are already looking at
their projects and the customers, where the projects will be going.

He has got a meeting toward the end of August after the National Committee,
after the statistical conference, where he is already making use of the report.
So the timeline of urgency, as you know — Larry, in his way along with Sally,
realizes the need to get this out and keep the momentum going. So they are
flowing along.

DR. CARR: Okay, bring us home. Privacy.

MS. KLOSS: We are not tingling. (laughter) Treading water a little bit. I
reported yesterday that we were going to consider in person draft three. And we
did. And there will be a substantially revised, I think, draft four to be
worked on.

The issue that we ran into was that our draft framework model wasn’t holding
up so well, that there was redundancy of recommendations under it, that we
found troubling. So I think the conclusion was, let’s look at existing
frameworks instead of creating our own.

So we are going to step back and choose a framework that works for this. The
complexity, again, is that just as we have talked today, we are straddling the
HIPAA mindset of obligations to the individual and their privacy requirements,
and the unique perspective of the community, and straddling those two. But
therein lies the innovation.

And so we have got lots of good suggestions. Had a lot of good discussion.
And we think we know where we go next. We are going to do a conference call,
select a model, and re-craft the letter, if we can find a suitable model.

But our goal remains to be bringing something forward in September. So we
are feeling a sense of urgency, but also realizing that whatever we set in
place here lays the groundwork for a lot of work to come. So it kind of needs
to be right.

We had no time to spend on our planning. But we certainly did look at
needing to work this issue, and talk more about whether out of this comes a
revision and an update of the stewardship, the 2009 stewardship model. And I
think the subcommittee is leaning toward that as a next work effort with the
letter framing the issues, and then going beyond that to update that document.

DR. CARR: One question. When you say you are looking for a framework, is
that a way to configure the letter? A way to think about your findings?

MS. KLOSS: It is the way to think about the stewardship model. Right now we
came up with six kind of pillars. But it is hard to open this in transparency,
what goes there versus accountability.

Agenda Item: Wrap Up

DR. CARR: I always have to conclude with my enormous appreciation for the
abilities, the wisdom, the perseverance, the diligence of this Committee. It is
really an honor to be a part of it. So thank you, everybody. Just remarkable

I think we are at a very exciting time. We are at a little bit of a pause in
the work that we have been doing. I think coming together for a day now, August
9th, to begin to incorporate the many different approaches that we are hearing.

I keep going back to the idea that was raised by everyone of the landscape,
what is out there, where is it headed, and how can we be an accelerator in at
least identifying the steps that need to be taken to get there, and the
strategies. And I think with the addition of the workgroup, that really just
opens our eyes to things that we don’t usually think about.

So I think with that, we will have an Executive Subcommittee call, Debbie.
But I would ask you to reflect the themes that we saw today. I have taken quite
a bit of notes. Maybe we can sort of put them together. I know Susan has as

MS. JACKSON: Just a clarification, it sounds like from the breakouts. We are
looking at three action letters in September, from three of the Subcommittees
— Privacy, Standards.

MS. GREENBERG: What is the third one? And I just want to clarify, so we are
going to have this in person meeting of the Executive Subcommittee, and there
are no other meetings planned except for obviously the September 21, 22 and the
previous half-day of the Standards Subcommittee. There are no other in-person
meetings planned?

(side conversation)

DR. CARR: I thank Walter for putting together the claims attachment thing. I
think it is so important that the whole committee understand what we are
talking about. And when we vote, you are voting because you understand
something and you agree with what is being proposed. I think the onus comes on
the Chairs to do what everyone really has been doing, to tee up what are we
doing, why are we doing it, what gets better, what are the difficult points. So
thank you for educating all of us.

MS. GREENBERG: Just one other point. September will probably be some type of
transition meeting, although this could be November. But I think we are
pointing toward September. Just try to hold, don’t make plans for the first
night of the September meeting because we will be having a dinner.

We talked about it a bit last night. It would be good to have full
participation in that dinner, because some of the former chairs might come
back. I just wanted to tell you that because I know that although you have the
date on the calendar, you may start making plans for that evening. So hold it
free. The meeting is day one, dinner the evening of day one. Thursday night,
the 20th.

DR. COHEN: I think it makes sense to remind all the Committee members who
are no longer here about that as well.

MS. GREENBERG: Yes. I don’t know, the ones who just retired might join us
also. Are there any comments from the floor? If not, the meeting of the
Committee is adjourned.

(Whereupon, at 3:48 p.m., the meeting was adjourned)