[This Transcript is Unedited]



September 23, 2009

Washington Marriott Hotel
1221 22nd Street, NW
Washington, D.C.

Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030
(703) 266-8402

Table of Contents


Agenda Item: Call to Order, Review Agenda

MR. REYNOLDS: I would like to welcome you to the second day of our NCVHS
full committee meeting. The National Committee is the main public advisory
committee to HHS on national health information policy.

I’m Harry Reynolds. I work at Blue Cross and Blue Shield in North Carolina
and chair the committee.

I want to welcome committee members, HHS staff, and others here in person,
as well as welcome those listening in on the Internet.

I would like to remind everyone to speak clearly and into the microphone.

Let’s now have introductions around the table and then around the room. For
those on the National Committee, I would ask, if you have any conflicts of
interest related to any issues coming before us today, please so publicly
indicate during your introduction.

I have no conflicts. Marjorie?

MS. GREENBERG: Good morning. I’m Marjorie Greenberg, from the National
Center for Health Statistics, CDC, and executive secretary to the committee.

DR. FRANCIS: I’m Leslie Francis, at the University of Utah. I’m a member of
the full committee, and I don’t have any conflicts.

DR. SCANLON: Bill Scanlon, Health Policy R&D, member of the committee.
No conflicts.

DR. STEINWACHS: Don Steinwachs, Johns Hopkins University, member of the
committee. No conflicts.

MS. MILAM: Sallie Milam, West Virginia Health Information Network, member of
the committee. No conflicts.

MR. LAND: Garland Land, National Association for Public Health Statistics
and Information Systems, member of the committee. No conflicts.

DR. LEPKOWSKI: Jim Lepkowski, University of Michigan, the Board of
Scientific Counselors, DHS liaison to the committee.

MR. HOUSTON: John Houston, University of Pittsburgh Medical Center, a member
of the committee. I have no conflicts.

DR. CARR: Justine Carr, Caritas Christi Healthcare, member of the committee.
No conflicts.

DR. SUAREZ: I’m Walter Suarez. I’m with Kaiser Permanente, a member of the
committee. No conflicts.

DR. FITZMAURICE: Michael Fitzmaurice, Agency for Healthcare Research and
Quality, liaison to the committee.

DR. WARREN: Judy Warren, University of Kansas School of Nursing, member of
the committee. No conflicts.

MR. J. SCANLON: Good morning. Jim Scanlon, deputy assistant secretary for
planning and evaluation at HHS, executive staff director for the full

MS. SQUIRE: Marietta Squire, NCHS, staff to the committee.

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

DR. MARIOTTO: Angela Mariotto, National Cancer Institute. I’m representing
Dr. Corio (phonetic), who is our liaison. No conflict.

DR. BICKFORD: Carol Bickford, American Nurses Association.

MS. HORLICK: Gail Horlick, CDC, staff of the Subcommittee on Privacy and

MS. VIOLA: Allison Viola, American Health Information Management

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

MR. BIRNBAUM: Adam Birnbaum, Blue Cross Blue Shield Association.

MS. SIGORDIN-WINN: Marie Sigordin-Winn (phonetic), Office for Civil Rights
at HHS.

MS. DOO: Lorraine Doo, CMS, Office of eHealth Standards and Services.

MR. REYNOLDS: The first thing we are going to do today is the privacy
letter, updates on that, John and Leslie, from the subcommittee yesterday, and
move that along. I may be adjusting the agenda today. I know that Garland and a
few others may have to leave a little bit early. I want to make sure we are
mindful of everybody’s time as they give some updates. I will take the
prerogative to do that.

John and Leslie?

Agenda Item: Privacy PHR Letter

DR. FRANCIS: John has the draft.

MR. HOUSTON: I guess we can just focus on the changes that we made in the
letter that was discussed —

MR. REYNOLDS: Let me ask a question first. The changes that you made were
based on exactly what was covered yesterday and there is no substantive content

MR. HOUSTON: No. We stuck specifically to changes that we discussed. I want
to make sure, from a wording perspective —

MR. REYNOLDS: Then I’m okay with doing it that way. If there were content
changes and substantive changes in the meaning, then I think we would need —

MR. HOUSTON: No. In fact, we specifically avoided — there were a couple of
cases where we thought maybe we could, and then we said, no, we’re not going to
make that change.

MR. REYNOLDS: That’s fine. Again, setting that as the ground rule, please
proceed with the changes.

DR. FRANCIS: There is a clean copy that was passed around. There are a
couple of typos and things that we caught at breakfast this morning.

MR. HOUSTON: Let me just go through the changes. I’m going to preface the
discussion of the first paragraph on the fact that this is a general statement
about NCVHS. It’s up to Harry and Marjorie and Jim to decide whether they want
to make additional changes to it. We just put this in here almost as a
placeholder for you guys to decide on.

With that said, the National Committee on Vital and Health Statistics,
NCVHS, is the Department of Health and Human Services’ statutory public
advisory body on health data, statistics, and on national health information
policy. The NCVHS has historically made recommendations about health
information privacy, confidentiality, and security, and has responsibility
under federal law to make recommendations to HHS on the Health Insurance
Portability and Accountability Act, HIPAA.

MS. GREENBERG: I don’t know if you should say “the administrative
simplification provisions of the” — I’m not sure if that’s what we
usually say or not.

DR. FRANCIS: The goal of this was that the first paragraph was about NCVHS
and the second is responsive to Mark’s point about the benefits of PHRs —
framing it.

MR. HOUSTON: I would leave it up to you guys to make the first paragraph as
you see fit.

The second paragraph: Personal health records, PHRs, are a growing part of
the health information landscape and provide substantial benefits to patients,
caregivers, health-care providers, and society more generally. However, PHRs
also raise important privacy and confidentiality and security concerns. Due to
these concerns, the American Recovery and Reinvestment Act, ARRA, requires that
a report be prepared by HHS, in consultation with the Federal Trade Commission,
FTC, identifying privacy and security requirements for PHRs that are not
operated by HIPAA-covered entities. This letter contains recommendations about
the privacy and security of PHRs for you to consider in creating this report or
considering other policy changes.


DR. HORNBROOK: Just one small thing. Could we, in passing perhaps, elaborate
on the word “benefits” by referring to continuity of care and patient

MR. HOUSTON: Do you want us to say “such as”?



DR. FITZMAURICE: On the second sentence, “However, PHRs raise important
privacy, confidentiality, and security concerns,” might I suggest,
“However, the use of PHR information raises important privacy,
confidentiality, and security concerns.” It’s use of that information.
Then later on we say we need to look at the security requirements for PHRs.

MR. HOUSTON: I’m not sure I would agree with that, Mike, and I’ll tell you
why — because the PHRs themselves have to be secured, so that somebody does
not break into them to steal information. While the information as well is
something to be considered, the actual PHRs and their design and operation, I
think, also raise security concerns.

DR. FITZMAURICE: Okay. We don’t want anybody to steal PHRs, let alone the
information inside of them.

MR. HOUSTON: Exactly.

Next paragraph: A PHR is an electronic record of individually identifiable
health information on an individual that can be drawn from multiple sources and
that is managed, shared, and controlled by or for the individuals. PHRs are
distinguished from electronic health records, EHRs, in that the latter are
created, gathered, managed, and consulted by authorized health-care clinicians
and staff.

DR. FRANCIS: Just so you know what we did there, we took the ARRA definition
and dumped the FTC definition, because people found that confusing. We moved
the ARRA definition up.

MR. HOUSTON: If you don’t like the definition, it is what it is.

Next paragraph: PHRs take many different forms and are rapidly evolving. In
some cases the PHR is a portal view to one or more providers. In other cases,
the PHR is created and operated by a third party which is not regulated or
subject to HIPAA protection.

PHRs may be managed by consumers, who may include patients themselves, their
caregivers, or their appropriately designated personal representatives.

Despite the important benefits of PHRs, consumers might not fully understand
the extent to which their information is protected by law and, consequently,
may inadvertently consent through an “I agree” button to unintended
information sharing and use.

DR. FRANCIS: What we did with that was, we simply put in the references to
additional people, as requested. The deletes are where we moved stuff up
earlier in the text.

MR. HOUSTON: This is just dealing with the use of acronyms. We changed
“values” to “themes.” We took out references that were just
for our own internal use.

There was a question about computer literacy. We changed this section:
Computer literacy varies. Some consumers may have limited familiarity with
interactive Web technologies common in PHRs.

We actually took out the two examples, because, even after putting in the
second sentence, we were concerned that it would still be limiting, and it was
not intended to be limiting in any way, shape, or form. We just generally said
there were concerns about computer literacy for certain populations.

Recommendation I-A: We removed “unless the information has been
separately transferred to a PHR,” at the end. We just felt like this was
extraneous and didn’t really add any meaning to the paragraph.

DR. FRANCIS: And that was, I think, an edit that was specifically done in
the full committee.

MR. HOUSTON: Recommendation II-B: The Secretary should encourage PHR
suppliers to develop their products in a manner that facilitates
interoperability by incorporating national standards for exchange of

DR. FRANCIS: That was the edit that was done in the full committee. Here is
the development of the point about the privacy implications.

MR. HOUSTON: A consumer may invest considerable time establishing a PHR.
Without the ability to electronically transfer information in a standard
format, it may be impossible for the consumer to switch to a different PHR. As
a result, if a PHR supplier changes privacy practices in a manner that is
unacceptable to the consumer, the consumer’s only effective choices may be to
remain with the supplier or to delete the consumer’s entire PHR record. Thus,
portability of PHR information is important in giving the consumers the ability
to select PHR suppliers that meet private, confidentiality, and security
expectations that are acceptable to the consumer.

I think we have a tense issue here.

MR. REYNOLDS: I’ll let you finish that, then I have a —

MR. HOUSTON: Go ahead, Harry. We can change the tense after —

MR. REYNOLDS: Do we need to add another sentence in recommendation II-B that
says the Secretary should encourage, but if at some point there is a
certification process for PHRs established, including this would be important?
So the letter moves forward as processes move forward. Everybody is looking at
certification of systems. Let it be there so that if there were a certification
process, we could actually update this letter and say, remember, we had
recommendation II-B; please include recommendation II-B. Now we are in the
definition of certified systems, if that were the case.

MR. HOUSTON: I have an opinion, probably, more than anything else on this.
One of the concerns we had, being overly prescriptive in this letter, was that
it could stifle innovation. I guess if we were going to propose certification,
we would probably want to say that —

MR. REYNOLDS: I didn’t say that we propose certification. I did not say
that. I said if a certification process occurs, these protections would be
included. That’s what I said. I’m not recommending this process. I’m saying if
there is one, then what would we want pulled into that, knowing that what we
recommended would be there?

MR. HOUSTON: Isn’t that sort of a roundabout way of suggesting a
certification process?

MR. REYNOLDS: The Secretary has already recognized, to HITSP and other
things, numerous certification processes on EHRs and everything else. We are
not recommending a new concept.

DR. FRANCIS: How about adding to the discussion a final sentence that reads
something like this: If any PHR certification processes are developed —

MR. HOUSTON: We want that up here?

DR. FRANCIS: You can put it there. If any PHR certification processes are
developed, they should incorporate the recommendations in this letter.

DR. FITZMAURICE: Or they should incorporate this recommendation, since we
are talking about interoperability.

DR. FRANCIS: They should incorporate this recommendation.

MR. REYNOLDS: That’s all it’s doing — just considering letting our body of
work live on as it looks like some things may occur, but not forcing that they
do occur.

DR. FITZMAURICE: Can we say “incorporate national exchange of


One other thing that I’m embarrassed to raise: I would change
“impossible” to “very difficult” or “practically
impossible,” rather than just “impossible.” Surely they can do
it, but —

MR. HOUSTON: Where is that?

DR. FRANCIS: In the black sentence that we didn’t change: It may be
impossible for the consumer —


DR. FRANCIS: Yes, okay.

MR. REYNOLDS: Okay, John, moving along.

MR. HOUSTON: Recommendation III-A: Disclosures of information from PHRs to
insurers or employers should require explicit consent immediately prior to
disclosure to reduce the risk of unlawful or unfair discrimination.

Recommendation III-C: PHR products should be designed to allow consumers to
identify designated categories of sensitive information. Consumers should then
have the ability to control the use and disclosure of the information in these
sensitive categories, including emergency situations.

This is to Harry’s point. NCVHS previously recommended that when information
in medical records is transferred for the purpose of treatment via the NHIN,
individuals should be able to request sequestering of certain defined
categories of sensitive information.

In our February 20, 2008 letter to Secretary Leavitt, we said the design of
the NHIN should permit individuals to sequester specific sections of their
health record in one or more predefined categories. Examples of such categories
include domestic violence, genetic information, mental health information,
information about reproductive health, and substance abuse. Similar design
functionality should also exist in PHRs, but with the ability vested in the
consumer to determine whether a health-care provider may break the glass to
access categories of sensitive information in emergency situations.

DR. FRANCIS: The only change there was to move the quote up from the
footnote, as Harry requested. Mark has a —

DR. HORNBROOK: This is very common language to avoid mental health stigma.
You leave out the data. And patients, of course, have lots of ideas about what
is stigmatizing besides mental health diagnoses.

I know that in the case of mental illness, drugs prescribed for mental
illness have drug-drug interactions and drug-supplement/folk medicine
interactions that can be important in the case of patients who undergo surgery.
Some SSRIs thin your blood and if you add gingko on top of that or some other
herbs, you get a patient who is a very high risk for surgery. Allowing patients
to hide this from other physicians if they are brought into any kind of
emergency situation is going to be not to their benefit.

I don’t know to what extent this committee should warn people that asserting
their right to privacy can also have deleterious effects on their health and on
their safety.

DR. FRANCIS: We took that up. This is about categories of information, not
necessarily about prescriptions. That is all discussed in the
sensitive-information letter. All we are doing here is tracking exactly what we
said in that letter.

MR. REYNOLDS: Mark, we also in previous letters dealt with the idea — just
because it wouldn’t be transferred, could it, in fact, be used for decision

MR. HOUSTON: This was simply a reference.

MR. REYNOLDS: That’s referencing that letter so that all that body of work
can be brought forward if people want to go back and look at it.

MR. HOUSTON: Roman numeral IV, recommendation IV-A: Consistent with the
other recommendations provided herein and with previous recommendations of
NCVHS regarding EHRs, national privacy, confidentiality, and security standards
should be established in a manner that supports PHR innovation.

I guess I should read this whole paragraph.

A primary benefit of PHRs to consumers is the ability to access their health
information when they are away from home. Consumers should expect the same
level of protections for their information wherever they access it. Presenters
at the hearings voiced considerable concern about the difficulties for PHR
suppliers who operate in multiple states when there are differences and
inconsistencies in privacy laws among the states. Although this letter is
directed specifically to PHRs, NCVHS also heard considerable concern in
testimony about difficulties encountered by providers operating in multiple
states when EHRs are subject to differences and inconsistencies in privacy laws
among the states. As the NHIN develops, the need for national uniformity is
likely to increase.

NCVHS had previously recommended that privacy and confidentiality rules
apply to all individuals and entities that create, compile, store, transmit, or
use personal health information in any form and in any setting, including
employers, insurers, financial institutions, commercial data providers,
application service providers, and schools. Because of the interplay between
PHRs and EHRs, NCVHS believes that there should be common national privacy,
confidentiality, and security standards for both the EHRs and PHRs, and that
these standards will facilitate PHR and EHR integration and use.

DR. FRANCIS: What we did there was taken language directly from the June 22,
2006 letter on the NHIN. The question that people had asked us during the full
committee meeting yesterday was about why we are bringing in EHRs. We hope that
language satisfies that concern.

MR. REYNOLDS: As a point of collaboration, when we finish this and you take
a look back through it, if there are sections of this that you think would be
helpful in ONC’s deliberations, since you testified last time, it might be good
for the co-chairs to decide what that is and then either you guys or me forward
it on, maybe to David’s attention.

MR. HOUSTON: In advance of publication?

MR. REYNOLDS: No, no, no. As soon as it’s ready. Again, we are not going to
stop our process.

DR. FRANCIS: I actually think the whole letter would be —

MR. REYNOLDS: Fine. But I’m saying that I think that’s a collaboration we
can do, rather than just throw it out there and maybe it will get back. If
there are specific things, let’s go ahead and do the collaboration after we
have completed our document.

DR. FRANCIS: Would it make sense to put a cc to 


DR. FRANCIS: No, okay.

MR. REYNOLDS: I’m talking about collaboration.

MR. HOUSTON: The next section, section V, was because of Bill’s concern
regarding who this applied to, whether it was consumers versus suppliers. We
just clarified that it was suppliers.

That really is the body of the letter. Am I allowed to make my own motion to
have it approved?

MR. REYNOLDS: Now that you have gotten to the end of the letter, you can ask
for a motion.

MR. HOUSTON: I ask for a motion for it to be approved.

DR. FRANCIS: I second his request.

MR. REYNOLDS: And you can comfortably be assured that your co-chair won’t be
the one seconding it. We would like a motion.

Don has a motion. Judy seconds. Any comments?

(No response)

All those in favor?

All those opposed?

DR. FRANCIS: Thank you all.

MR. REYNOLDS: I commend the group as an entirety. I think the thing that is
fun — and I know I have referenced it a number of times as I prepare to join
the past chairs — it really is a collaborative group that is willing to have
at it, but in the end, tries to keep the common good in mind. That’s an
exciting thing.


DR. SUAREZ: I do want to commend the leadership of the chairs of our
committee for setting out the drafting of this letter and the process and our
conversations and the dedication they had to address concerns of members of the
subcommittee. I think it was very valuable. I appreciate that.

I do want to mention that this is a very important letter, a very important
document. I think PHR is one space that there are not too many people working
on. Our committee has really a good opportunity. This sets up the stage for
something bigger and better. So I think this is a great topic to focus on.

I made a suggestion during one of our conference calls of the subcommittee,
which is that I think we have a body of information out of the three-day
hearings that we held, and it would be wonderful if we can, with the support
from staff, develop sort of a glossy report that aggregates and documents all
the testimony that we heard. That will be able to actually put the document
that we are about to submit to the Secretary in some context and support and
supplement and sort of set the background stage for that. I mentioned to our
chairs that I would be very happy to help in that.

MR. REYNOLDS: Is this similar to the glossy we just put out last year on

DR. FRANCIS: I think it might be more like the secondary-uses report,
actually, bringing together — I want to just follow up and say that this
letter would not be what it is without the amazing input of all the members of
the subcommittee, too. This is a truly collaborative effort.

I really agree with Walter. The testimony that we heard was genuinely
extraordinary. Putting together a kind of report might be —

MR. REYNOLDS: Let me rephrase my question. There’s a difference between just
putting our testimony out on the street versus having an opinion on the
testimony, versus having a primer. We are going to be talking about a primer
next. All I’m trying to understand is — great idea. Tell us the category so
that we can all — because, depending on what you are going to do, the full
committee may need to sit down and say, okay, are we now expressing opinions
the same or different than our letter? And, oh, by the way, are we then giving
anybody an advantage or a — this is a letter about that. When you go back and
do the individual things, are you moving — the way you write it and the way
you pick it up, if you don’t pick it up in its entirety, then you are judging
who said the most important   all I want to do is make sure that, as
we got the whole committee together, as we progress in this, whatever is
recommended out of the subcommittee we would want at least the executive
subcommittee to have a look at before we just would go do it.

That’s all I’m saying.

MR. HOUSTON: I think what Walter is saying here — when we did the
meaningful-use testimony, we came out with a document that I think summarized
the discussion in a nice way, but it really wasn’t intended to provide
recommendations. I get the sense that’s what Walter is asking for —

MR. REYNOLDS: Fine. But again, I would ask the subcommittee to make sure we
know what we are getting and we know how we are positioning it. Again, those
are the ongoing collaterals that we give the environment.

MS. GREENBERG: I’m a little confused here. We have all the presentations
that you received in those three days. They are all posted on the Web site. I
thought we had someone who did minutes or summaries from the meetings. Did we,
from all three days?


MS. GREENBERG: So what, in addition, are you asking for?

MR. HOUSTON: I think the summaries were edited to some degree, but they
weren’t finished the way that — when we did the meaningful-use letter, I think
the summary was finished more completely, such that if somebody was reading it,
I think they would get a better understanding of the discussion.

MR. REYNOLDS: You see some of our other collateral. Why don’t you take a
look at what you want to do and bring forward a recommendation on what you want
to do.

I think it’s a great point. I think it is a great body of work, as
everything else has been. But let’s just understand what we are doing and how
it’s different and what it means. I think that would be incredibly important.

DR. FRANCIS: We don’t contemplate additional recommendations. I think what
we contemplate is a fact summary, perhaps that might include these
recommendations from the letter.

MS. GREENBERG: I’m still not really following what you are trying to
accomplish here.

DR. SUAREZ: Marjorie, you mentioned last time that it could be actually
something that staff could — just like what we did with subcontracting to help
write a report summarizing the testimony on meaningful use. My suggestion —
and we don’t need to elaborate more; I guess the subcommittee will have a
chance to discuss it — there are presentations, and slides only say something.
There are minutes. There are very detailed three-day meetings. I don’t think
there is a simple 25-page or 20-page document that describes in an organized
way the essence of all the materials that were presented. Just like we have
minutes from the meaningful-use two-day event —

MS. GREENBERG: We have minutes from this also, from these three days.

DR. SUAREZ: I know. That’s what I’m saying. We have minutes from the
meaningful use, we have presentations from the meaningful use, and we then put
together a summary 

MR. REYNOLDS: The chair and Executive Committee are willing to accept a
recommendation from the subcommittee that we will then take under advisement.
If it does change any substance, it will be brought back to the full committee.

MS. GREENBERG: Let me just ask, we had sort of a summary from the meaningful
use and then we had observations. But you are talking more about the former?

MR. HOUSTON: No. My apologies. I’m really probably thinking more of the
latter. I think this is intended to be something for public consumption that
was simply not a bunch of minutes that you really had to pore through to try to
understand, and there wasn’t any attempt to try to consolidate it in a fashion
that was readable.

I agree with Walter. There was an enormous amount of rich, good testimony
and —

MR. REYNOLDS: Whatever it is, you will be bringing forward a recommendation.
Great comment.


DR. FITZMAURICE: We mention in the report that some of these PHRs are not
HIPAA entities. I think there is a lot of consumer ignorance about how these
private companies capture all your clicks when you are negotiating through any
kind of product that they offer. There is something to be warned or something
to be educating the public about asking these companies what they are going to
do with the patient’s data. Even if they aren’t identifying them person by
person, there is a way to aggregate the data up for them to sell products,
because they have customers that give them aggregative information. There is
some sort of disclosure issue that we should highlight to people here, it seems
to me — not in this report, but ultimately there should be something to deal
with the non-HIPAA, non-protection issue. Most of these companies assert that
they have property rights over the electrons that sit inside their servers.

MR. REYNOLDS: Again, that’s good input to the subcommittee as you continue
your deliberations and your next hearings.

With that, let’s talk a little bit about health data stewardship.

A lot of times we thank people afterwards. I’ll thank everybody before this
starts. I think, one, we always enjoy the opportunity to work with Susan
Kanaan, who takes many of our basic words and turns them into a wonderful
story. That’s a good thing.

Then I would like to commend Justine, who has put an awful lot of effort and
time into this. I rode their coattails as the third person of that group. And
that’s what I did. I didn’t do anything more than that.

Justine, do you want to kind of position it? We have sent this out to
everyone. You have seen it. We consider this a final document. We’ll show you a
couple little things. You had your opportunity. You took your opportunity in
many cases. This is to just bring it back through before we actually start
publishing it. If you have something that is really bothering you, let’s talk,
but please make sure that it’s really bothering you, because we have through
this laborious process. I will welcome your comments.


Agenda Item: Health Data Stewardship

DR. CARR: Just to frame it, as you recall, when we were working on the uses
of health data, that broadened our conversation about health data stewardship.
We left those hearings with a plan to do further work on that. However, since
that time, a number of groups came forward  AMIA; around the same time,
the Office of the National Coordinator, Center for Democracy and Technology;
actually, AHIMA also — I have one little change to make — with excellent
documents. So we did not feel that we needed to continue what we — others had
already picked up what we were doing, so we didn’t need to take a leadership

However, we did feel that there would be value in simply putting together a
compendium of what various organizations had put forward. That is the purpose
of this. It is meant to be an overview and a resource to direct people back to
source documents.

We got some excellent feedback from all sectors of the committee. I thank
you very much for taking the time to read it and to relay your very, very
thoughtful attention to the details.

I would just say, in terms of what’s new — should I just do that? We are
not going to read it. We have all read it.

MR. REYNOLDS: It’s what’s new, yes.

DR. CARR: Mainly, we incorporated more closely the white paper from the
Office of the National Coordinator to make sure —

MR. REYNOLDS: And that is on page what of the document?

DR. CARR: It’s sort of background. Let me just do it this way and then I’ll
ask you for your suggestions.

We added figure 1. I think it was Mark who said it’s hard to figure out who
we are talking about. I liberally borrowed from a figure that I had seen in a
Marc Overhage document to just identify data sources, data users, and data
uses, just to focus people. So thanks, Marc, for that.

From there, we just say what it is, why it is important, what the key
principles and practices are. Here we did an aggregate of our own categories of
important areas, including individual rights, responsibilities, security
safeguards, and accountability, enforcement, and remedies. In that we
incorporated all of the different recommendations.

Then we have a little discussion of the major themes and a summary. In
Appendix A, we have a little box on each of these various documents. The one
that I want to also make sure that we just add on is the document that came
from AHIMA. We reference it in the citations, but I think it was an oversight
that we didn’t get it in that box. That came out in 2008.

What remains right now is sort of an interesting philosophical issue that
came forward. As we were putting this together, it seemed all about privacy,
but Leslie pointed out that it didn’t really specifically use the usual
terminology. With that observation, we have made two changes in the key

Susan, do you want to —

MR. REYNOLDS: Those are on the screen right now.

MS. KANAAN: The big point is that this entire document, primer, set of
principles, is grounded in the right to privacy and confidentiality as one of
the fundamental principles. So we added that to the introduction to the
section, where we break out some of the key components. You will see that there
in red.

So that’s one change from what you have in your agenda books.

Then, at Leslie’s suggestion, we also made it a specific activity or
component of the responsibilities of the health data stewardship. Leslie’s
suggested language is “adherence to an appropriately determined set of
privacy and confidentiality principles.”

Those are the only changes to the document that you have in your agenda

MS. GREENBERG: Principles or practices?

DR. FRANCIS: Could be both.

MS. GREENBERG: It says practices and you said principles.

MS. KANAAN: I beg your pardon. Practices. It was a slip.

MR. REYNOLDS: Is it both?

DR. FRANCIS: I would put both, actually.


MR. REYNOLDS: Please continue.

MS. GREENBERG: I guess I have a little bit of a problem with this kind of
blanket statement about the right  there isn’t an absolute right to
privacy or, probably, confidentiality in health information. It’s not an
absolute. In the case of the personal health records we were talking about, I
think people agree that this was created by the person and they should be able
to control its uses. For other health information, whether it be electronic
health records or data in claims or wherever  personally identifiable
data — there isn’t an absolute right to privacy. The HIPAA rule has all sorts
of exceptions.

DR. CARR: So do we even need this phrase?

MS. KANAAN: Maybe we don’t need it. That was the initial effort to kind of
satisfy Leslie’s concerns, but maybe —

MS. GREENBERG: I would be more comfortable if, where it says “can be
grouped into four categories: individual rights” — even if you said
“grounded in principles of privacy and confidentiality best
practices,” or something. But I think this implies — and there is a lot
of confusion about that — that people have an absolute right to privacy of all
their personal health information, and it just isn’t a fact.

MS. KANAAN: Frankly, I think it’s kind of awkward to have to insert that
phrase there anyway, even though it was my idea. Basically, it’s a list
reiterating the components. It would be preferable to have nothing there, which
was your initial suggestion.

DR. FRANCIS: I’m fine with taking that out. My primary concern, which I had
suggested, I guess, earlier on as well, is that I want to make it clear that
actual privacy practices are a responsibility of the data steward, as well as
having it be the case that privacy is an overarching value.

MR. HOUSTON: Where you have it now, I agree, is awkward, especially since
right below it you say individual rights and you outline by bullets what they
are. To Marjorie’s point, in that section below where you say individual
rights, you could have a bullet that describes that patients do have certain
rights to privacy — not meaning that it’s an absolute, but such as ascribed to
in HIPAA. You could make it clear that there are certain statutory rights that
a patient does have. If you put it as a bullet there, I think it might be a
more — and you could describe it more than just a blurb.

MS. KANAAN: Do people recommend that we do that?


MS. KANAAN: Do you want to suggest some language, John? Certain statutory
rights are —

MR. HOUSTON: You could say “certain rights to privacy, as set forth in
both state and federal laws.” There are a variety of them. It’s not just

MR. REYNOLDS: Go to where you added the other change.

MS. GREENBERG: We might want to say “certain rights to privacy of
personal health information, as set forth in state and federal law.”

MS. KANAAN: I’ll write that out later. The other change is —

MR. REYNOLDS: So adding that in there, do we need this also. I’m not voting
yes or no. I’m asking a question. When you go up and change the first one, I
want to make sure that the second one —

DR. FRANCIS: Yes. I think that’s a clear responsibility —


MS. MILAM: I was wondering if we would want to  the information that
you previously removed in the parenthetical could easily be put at the
beginning of that sentence: “The privacy principles and practices outlined
in these documents can be grouped into four categories,” if that is still
important to have up front. That gets rid of the excess verbiage.

MS. KANAAN: Except the principles and practices are — the referent there is
data stewardship principles and practices, not just privacy specifically. It’s
the key principles and practices of health data stewardship, as indicated in
the subhead there.

MR. REYNOLDS: Everybody satisfied with what’s there now? Walter?

DR. SUAREZ: I just don’t understand how the first bullet, the certain rights
to privacy, relates to the next set of bullets.

MS. KANAAN: They are different.

DR. SUAREZ: One of the rights of privacy is bullet number 2. Another one is
bullet number 3.

PARTICIPANT: Those don’t have to do with privacy, really.

DR. SUAREZ: They are defining the privacy —

MS. MILAM: The only one that jumps out to me that is clearly not privacy is
under number 2, the first bullet about good statistical practices. But the rest
are elements of privacy. So it wouldn’t be incorrect, if it would be helpful,
to put that information at the front end.

MS. GREENBERG: I also think you should say “laws and
regulations,” because the major thing is a regulation. It isn’t even a

MR. HOUSTON: That’s true, yes. I think it is important to make it clear that
there are regulatory obligations. You’re right.

MS. GREENBERG: I think that belongs right there, up front.

DR. SUAREZ: Again, bullet number 2 is what is bullet number 1.


DR. SUAREZ: Yes. That is defining the HIPAA rule. Yes, that is a right.

MS. GREENBERG: That’s a right, yes. But it’s not the same as the other one.

DR. SUAREZ: Certain rights to privacy of PHR is bullet number 1. One of them
is bullet number 2.


DR. SCANLON: I’m going to agree with Walter, not about 2, but about bullet
5, individual participation and consent to the use of their data. That’s more
of a privacy right, in my mind. It’s a clear link, even though I would agree
with you that it may be within what they have published as HIPAA. But if I’m
just walking down the street, I recognize the right to control my use of data
as more of a privacy issue.

My suggestion might be, why not take bullet number 1, make it the last
bullet, and say “other rights to privacy, as set forth.”

(Chorus of yeses)

MR. REYNOLDS: Justine, are you saying those were the only changes?

DR. CARR: Then just in the table, we wanted to include the AHIMA 2008
stewardship document that has four recommended actions:

• Establish a mechanism for collaboration among representative groups
to ensure support and utilize the strengths of all organizations.

• Develop a framework for policy development to enable patients and
consumers to meet the informational needs of transparency.

• In concert with all partners, identify and coordinate priorities,
policies, practices that need to be developed and implement harmonized data,
reporting initiatives.

• Develop and implement a data-release framework for policy development
to promote in advance the trusted release of data.

That’s not in the body of it, but just for completeness — that was the only
reference that we didn’t include in the table — I want to make sure it gets in

MR. REYNOLDS: Good. Garland?

MR. LAND: I think figure 1 is helpful. As I look at it more carefully,
though, it could be interpreted to be restrictive. Under public health, for
example, there are many more data uses than just communicable disease
reporting. If we would, where we say figure 1, illustrate some of the sources
and uses of personal health data, then I think —

MR. REYNOLDS: I think that’s good.

DR. CARR: Examples of sources. How about that?

MR. HOUSTON: In your heading, rather than data users and data uses, you
might simply say “examples of,” and that heading on your table.

DR. CARR: At a minimum, let’s change what it says in figure 1. Say
“examples of.” I’m going to try to make it fit on one line, for
spacing reasons. Would people accept “some of,” Garland’s original

MR. REYNOLDS: I don’t think you need the word “range.”

DR. CARR: Right. I think “examples of.”

MR. REYNOLDS: Walter, you had your hand up.

DR. SUAREZ: Not on this. I’m looking at item number 4, key principles and
practices, accountability, enforcement, and remedies. The previous three
describe what data stewardship requires.

MR. REYNOLDS: Where are we looking?

DR. SUAREZ: Page 5, item 4. The previous three items describe what data
stewardship requires. This one changes the statement by saying “policies
are needed.” It’s almost like a recommendation or some sort of direction.
So my suggestion is to also say, “Data stewardship requires policies that
specify proper use and identify clear accountability,” so that it doesn’t

MR. REYNOLDS: That allows the individual entity to decide what those are,
rather than saying that there are policies. I don’t have a problem with that

Any other comments from anybody?

(No response)

Justine and Susan, thanks again. And thanks to everybody. What I’m starting
to see a difference in is, as we send a document out, you are taking the time
ahead of time. I think, hopefully, throughout the committees and other things,
you are seeing that if you give us comments as a group, we will, in fact,
consider them, incorporate them. If, in fact, we can’t necessarily come to use
all them, you will be personally contacted and discussed as to what your
meaning was. That’s really important ahead of time, so that we are not sitting
in here going, let’s make a deal, after a lot of people have made a whole lot
of effort to get somewhere. I think we saw that in the privacy letter, and this
is another great example.

If there is nothing else on that, I would welcome a motion to publish this
and move it forward.

DR. SUAREZ: I move.

DR. FRANCIS: Second.

MR. REYNOLDS: Walter moves, Leslie seconds. Any comment?

(No response)

All those in favor?


Thank you very much.

MS. GREENBERG: Actually, Susan, if you could work with Jeannine and we can
make those few changes, then we would like to take copies to the gathering with
the former members.

MR. REYNOLDS: When I kick it off tomorrow, I’m going to show them some of
the current collateral and kind of show them where we are going. That’s great.

Our next item we are going to adjust a little bit. For timing purposes, we
are going to go ahead and have the NCHS and BSC update.

Bill, I think you are leading that. Jim, thanks for coming, and everybody,
thanks for coming. I know, Garland, you have a difference. So that will make
sure we get that covered in its entirety the right way.

Agenda Item: NCHS/BSC Update

DR. SCANLON: Okay. I can actually be very brief about this. At the end, I
think I want to talk about an aspect of what the BSC is going to do tomorrow.
But since the BSC has not met since we last met, I can’t really describe
activities in detail.

Jim is here. He may want to add more about what has happened in the interim
since you got your last report. Garland was going to talk about what’s
happening with vital statistics.

But I think the one general thing — it was true the last time we heard part
about it, and we heard more about it in terms of Jim’s update yesterday — is
that for a very long period of time, we were talking about the dark clouds that
were over NCHS and all of the changes that were occurring in terms of cutting
back on the various situations. The budget situation has eased. If Ed were here
today — and I think those of us who follow this more intensely would agree
with him — getting back to where we were is not necessarily where we want to
be. The surveys are still short of what we need in the way of information to
better manage the health-care system and to better promote health. So thinking
about that — and that’s part of what our vision discussion was yesterday — we
may be sort of relieved that the budget situation has been improved, but we
shouldn’t become complacent because the budget situation has improved.

Jim, do you want to start, if there is anything you want to add? Then
Garland can talk about vital statistics.

DR. LEPKOWSKI: As you said, the committee has not met since June. We are
only getting reports, a series of reports, reviewing major survey systems. We
are turning to one on fertility and family growth tomorrow. But mainly the
clouds have been parted somewhat in terms of, as was said, moving back to a
point that probably should be where the agency was anyway, with no progress in
terms of development of new surveys and systems.

We will hear, I think, tomorrow about a survey that has managed to, for the
same amount of money, increase the sample size substantially. There are
continuing to be things that are going on within the agency that are good news.
But there are still other issues that affect the vital and health statistics
system in particular that continue to be troubling and of concern to the
interests of the board.

MR. LAND: There have been basically two issues that we have been trying to
understand and resolve. One is the data elements that would be collected under
the Vital Statistics System. There was a proposal to severely restrict the
number of data items to what were called the core data items. The other issue
has been that not all the states are collecting the same data, and not using
the 2003 standard certificate. At the national level that creates problems,
because some states are collecting different data than others.

Let me just talk briefly about each one of those.

On the core data, originally the National Center was proposing to collect
only core data in 2010. The decision has been made to continue collecting what
has been collected in the past in 2010 and not go to the core concept. That
still leaves open what will happen in 2011, but at least there is some
breathing room for us to try to work through that issue.

At the same time, there was supposed to be a new contract in place for 2010,
and it appears, although we haven’t received formal word, that that contract
may be moved back to 2011 because of not going to the core. But there is a
recognition that it’s more than just core items, the data items, that we really
need to be looking at how we improve the system in general through a new
contract, how we improve the completeness of the data and the timeliness of the
data and the quality of the data.

So NVSS has been working closely with the National Center and developing a
strategy for how we can address those. I think we are coming very close to
working out a process whereby we will all come together and develop an approach
that will improve the system, using the contract mechanism to do that. So I
think we have made a lot of progress in terms of getting at where we all want
to be in terms of the system itself in the future.

In terms of trying to get all the states collecting the same data, the
National Center, it appears, will be receiving an increase in funding for the
next fiscal year of around $14 million. That’s both in the House and Senate
versions, so most likely that will prevail. We don’t know if any of that money
will be used for enhancements of the Vital Statistics System, but we would hope
that that might be the case.

At the same time, we are trying to get an additional increase for the
center. This really has come about through the March of Dimes, which is taking
a major leadership role in this issue of trying to get all the data collected
in a common format. Late last week, a sign-on letter was developed for some
major health organizations to go to Congress to get some additional funding,
even beyond the $14 million, to provide funding for the states to collect
common data sets.

So there are major efforts going on among a lot of organizations to support
the National Center and their funding. I have met with OMB, which oversees the
CDC budget, trying to help them understand the issues. We have met with people
in CDC. A lot of effort is being made to educate and inform about the vital
statistics system and what needs to be done for the future.

So we are positive — good things are happening   and hopeful for
the future.

DR. SCANLON: There is one area that I want to add. I talked before about the
fact that the Board of Scientific Counselors has gone through a process where
they have different programs of NCHS reviewed by an outside panel. Tomorrow the
one that is being discussed is about long-term care statistics. I know more
about this because I was a member of that review panel.

But I want to talk about it because I think there is real overlap in terms
of, in some ways, the conclusions of the panel with what we discussed yesterday
in terms of a vision for future health statistics. Long-term care, in some
ways, is one of the less well-understood areas, less well-documented areas.
It’s not just nursing homes. There is this issue of what we know about all the
long-term care that is going on in this country. The answer is often sort of

NCHS has been doing some very valuable surveys over the years. I used to be
a long-term care researcher, and I benefited greatly from the data that NCHS
has collected. At the same time, there is this issue of how we can get a better
grip on the overall provision of long-term care. The panel came to the
conclusion that a part of this is that you can’t just think about having
surveys for everything. We cannot be reliant on sort of a single approach. What
we need to think about is, how do we build the mosaic of information that will
provide us what we need, through some combination of administrative data and
survey data?

I think that’s very much consistent with what we talked about yesterday in
terms of how we bring EHRs, maybe even PHRs, into a world of health statistics
and then complement them, when necessary, with other ways of data collection.
Long-term care is going to be handicapped because EHRs are not going to be a
big part of it, even when they become well established in what you might think
of as the visible providers, like home health or nursing homes or even assisted
living facilities, because a lot of long-term care is still going on in
people’s homes, operating as sort of gray markets, et cetera.

But we do need to think about, for budgetary reasons alone, the strategy
that is efficient to get the information that we need for policy purposes.
That’s going to be the discussion tomorrow. I think it parallels perfectly with
our discussion here in terms of what the vision is for statistics for the
21st century.

MR. REYNOLDS: Questions or comments? Yes, Marjorie.

MS. GREENBERG: Some of us, unfortunately, will miss the next two days’
meetings because we are going down to Charlottesville, which you will be
hearing about later. But I saw the agenda, and there is also going to be a very
interesting discussion — timely and interesting discussion  about
different estimates of the uninsured. There has been a lot of stuff in
Health Affairs and otherwise. Mike O’Grady was a member of the committee
and has certainly met with this group. It had a piece in Health Affairs,
and there have been others as well.

I think that whole area raises a lot of interesting questions about data
stewardship, possibly, data integrity, how you use data for policy, and all of
that. I just refer people to the — if you are able to go to the meeting or to
the minutes afterwards. It relates to, I think, also the work that this
committee has done about data for health reform and modeling and all of that.

MR. REYNOLDS: Again, I thought yesterday’s discussion was very, very helpful
as far as all of us moving forward in new and different ways.

MS. GREENBERG: Can I raise something about the data stewardship?


MS. GREENBERG: I’m a little late on this, I realize —

MR. REYNOLDS: You mean change it?

MS. GREENBERG: No, I don’t want to change the document at all.

MR. REYNOLDS: Because you can’t do that.

MS. GREENBERG: I can’t. It has been approved. It’s done.

But it’s a document right now, and we didn’t talk about what we want to do
with it, how we want to disseminate it. I’m assuming we will just have a short
cover letter from the chair transmitting it to the Secretary, just saying why
we developed — but very brief. The document speaks for itself. We would also
copy, probably, the Data Council co-chairs.

We haven’t had any presentations to the Data Council from the National
Committee recently. We might think of one in the next few months, in which this
could be presented, some of the privacy work, what we are looking for with the
health statistics vision, all of that. There are some, probably, new members on
the Data Council. That probably would involve you, Harry and maybe a chair of
one of the — possibly John. But we can work that out.

But I would suggest that to kind of raise the consciousness of the Data
Council members, who are the key data people, policy people, in the respective
agencies throughout the department.

Then also I think we might want to package this in an attractive format that
people could distribute, send out, what have you. Is there a desire to do that?
I know Judy talked about — you can always refer people to the Web. But this is
a nice little, concise document. It’s a nice little reference, I think.

The question is if you would like us to work on that. Obviously, there is
always a time lag. We won’t to post it and to send it, et cetera.

MR. REYNOLDS: Let’s work on it. If anybody on the committee has any
particular group that they think it would be good to make sure it gets to
personally, rather than just on the Web, that would be great. Then I think,
obviously, we should send it out to everybody whose document we referenced,
since they are part of the actual body. We need to make sure we do that, so
that somebody doesn’t walk up to them and say, “Oh, by the way” —

DR. GREEN: Harry, I think this is a qualitatively different product than
most of our products, by its core nature and by virtue of its messages. What do
you think about an active push dissemination, to particularly health
professional schools and their graduate programs, where we are producing the
next generation of nurses, physicians, pharmacists, dentists, psychologists,
social workers? Doesn’t this need to hit curricula? Don’t we need to stop
graduating health professionals that don’t get this concept?

I’m not an expert here, but I’m willing to bet at least a six-pack of beer
with anyone that we won’t find data stewardship listed in the curricula of the
health professions at very many locations in the country. It should be. It
should be. Now that it’s an understandable document — I don’t think posting it
on the Web and sending it to the usual suspects is a proper —


MR. REYNOLDS: That’s why we are having the discussion.

DR. GREEN: I want to agitate for health-profession educators, that we
somehow or other get this in front of them. I like Marjorie’s suggestion. If
there was one example of it that is an attractive document that then can be
seen and held by a dean and then go to the Web site, then the dissemination
will take care of itself to a large extent after that.

MR. REYNOLDS: I think also we need to look — and maybe that will be us
working with ONC, in a way — you have the stimulus money out there on training
professionals that we talked about yesterday. How it’s made aware that that is
available as those things are occurring — much along your lines. They are
going to kick up a lot of those education programs, not even just in the
standard universities, but you are going to be looking at community colleges
and everything else that is going to be building these things out.


DR. WARREN: You just made me think that the call from ONC on the education
of professionals has not occurred yet. What we might want to do is talk with
Chuck Friedman. This may be a requirement for funding, that data stewardship is
taught in whatever curriculum is there.

I agree with Larry. I don’t think we do a good job with our clinicians,
regardless of which one it is, in teaching about data stewardship. One, most of
the students find it boring, and it’s only the faculty that get excited about
it. But I think it’s a critical thing. They are all busy learning clinical
stuff, all the fun stuff, not data.

MR. REYNOLDS: Since this is your day job, why don’t you take a look at it
and maybe recommend how we could touch base with ONC and what the right kind of
phrasing and wording would be to do that with Chuck. I think that would be

DR. WARREN: Sure. I would like to work with Larry on that.

MR. REYNOLDS: I’m saying, whoever. But I’m saying, if you wouldn’t mind,
since you know best how to reach out to them, since that’s the world you live


DR. BICKFORD: Carol Bickford, American Nurses Association.

Don’t forget the CIS folks, information systems people, and their
administrators — our CIOs, CEOs, our chief nursing officers, administration,
as well as IS.

MR. REYNOLDS: Good. Jim?

MR. SCANLON: Very quickly, there are two — the Recovery Act workforce
areas. There were two things. One was curriculum development. Again, the
announcements haven’t come out for those yet. Certainly these kinds of 
it’s more than just data stewardship, obviously. Secondly is the actual
training for students in informatics and workforce.

Maybe we should work with Chuck to see if that couldn’t be made part of the
reference material.

MS. GREENBERG: And the extension centers, once they are funded. That’s why
I’m thinking it would be nice to have it made into more of a slick document.

MR. REYNOLDS: Your other brother Jim.

DR. LEPKOWSKI: As a statistician, let me add to that that the statistical
community needs to be engaged in this. I would say most statisticians have no
understanding of this at all. It’s very important that it be taught at the
graduate level, especially in public health.

MR. REYNOLDS: Any other comments?

(No response)

Marjorie, did you want to take a few minutes, other than what we have
already discussed, on the anniversary in Charlottesville?

Agenda Item: Planning NCVHS 60th
Anniversary Symposium

MS. GREENBERG: I would say the activities around the 60th
anniversary are in full swing. We have had some preliminary activities, but now
we really have a lot going on, from this meeting really through next summer.

As you know, several of us are caravanning down to Charlottesville,
Virginia, right after this meeting ends. We are convening the former chairs of
the National Committee with whom we are still in contact and who are able to
attend. At this point we are expecting Ron Blankenbaker, who was chair in the
1980s, and all the chairs since Ron: Judy Miller Jones, Don Detmer, John
Lumpkin, Simon Cohn, and, of course, our current chair, Harry Reynolds. We are
very excited about that.

Susan Kanaan, who has — I think it’s really one of the strengths of this
committee that we have these longstanding relationships with former chairs,
former members, and that we have a writer and historian who goes back to —
when did you start working with us?

MS. KANAAN: Nineteen years ago.

MS. GREENBERG: In 1990. So, actually, in 2010, that will be your
20th anniversary. Even when she moved to California, we didn’t let
her get away from us.

That, to me, is very gratifying. Jim and I will both be there for the event.
Susan will be conducting a series of oral histories with each of the chairs,
which we are videotaping. We are working, through the good services of Larry
Green and our colleague Bob Phillips, from the American Academy of Family
Physicians, with the UVA School of Family Medicine. They will be videotaping
those tomorrow morning and Friday morning. Then we are also going to be doing a
roundtable discussion with all of the chairs tomorrow afternoon. That will be
videotaped. Then we will be taking excerpts of this. I’m sure all of you will
want to watch all the hours of videotaping, but there may be other people who
don’t have the time for that — or the stomach or something — so we will be
trying to create some smaller products that can be put on the Web and that we
also would have at our celebration and symposium in June.

It’s June 17, the afternoon of June 17, when we will be at the National
Academy of Sciences. That’s right after the full committee meeting adjourns.

So we are very excited about that. There will be a celebratory dinner
tomorrow night.

That’s what is happening in the next few days. I especially want to thank
Debbie Jackson, who has really — it would never be happening without her. I
have had this vision, but she has done all the work in making it happen 
everything down to how people are getting down there. Of course, Jeannine
Christiani and Catherine and Debbie actually made a site visit down to UVA
about a month or two ago to visit the hotel where we are going to do the
videotaping, the restaurants. This has been a labor of love, I must say, and
I’m deeply grateful to them. If anything doesn’t go well, I’m taking full
responsibility. They have done a terrific job.

We have, of course, as I said, the event in June. Also I have, as you know,
encouraged you all to think in terms of activities you might be doing in the
coming year that you could sort of connect to the 60th. I know that
Leslie has one in full swing. Do you want to say a few words about that?

DR. FRANCIS: The Privacy, Confidentiality, and Security Subcommittee will be
cosponsoring, with the University of Utah law school, as well as the division
of medical ethics, a symposium on, the law meets all kinds of new developments
in health IT. All members of the privacy committee are invited to come. John is
going to be speaking. Maya is going to be speaking. If any of the rest of you
would like to give talks, let me know. I would be delighted to have people do
that. Mark Rothstein is confirmed as a speaker. He will be looking at the
sensitive information question. Nicholas Terry, who has written pieces about
Health 2.0, will be speaking about Health 2.0. He is at St. Louis University
law school.

I’m also working with the chair of our Department of Medical Informatics and
with the people at Intermountain, who are well known for their work in
informatics. What I would like to have, actually, is another panel on
deidentified data, which I don’t have a speaker for yet. But if you have
thoughts about that, let me know.

MS. GREENBERG: The dates are?

DR. FRANCIS: March 4 and 5, Thursday and Friday. We’ll put everybody up at
the U Guest House, which is right on campus and very nice. It’s also the primo
powder time. If you want to come and spend the weekend, we’ll make sure you can

MS. GREENBERG: We will support the attendance by the members of the
subcommittee, but if others want to attend, of course, they are invited. We
can’t travel everybody. I think the whole committee is invited.

MR. HOUSTON: What that really says is that if somebody joins the
subcommittee now —

MS. GREENBERG: This is your opportunity.

MR. HOUSTON: Not that I’m saying that anybody should game this.

MS. GREENBERG: I should have mentioned, in fact, what we are planning to do
at the June 17th symposium. We will have a session that is organized
by the Privacy and Security Subcommittee, which will draw on the work that they
have done, but particularly, I think, this conference will come into play. They
are responsible for organizing that.

We will have a session around — I don’t want to steal Don and Bill’s
thunder — where we are going with the 21st-century vision for
health statistics. I think we are sort of repositioning how we are even going
to refer to that. But having finished phase one — and Don can talk about that
when we have the subcommittee report.

Then we talked about having a session organized by the Standards
Subcommittee related to HIPAA and e-prescribing.

Each of you will have a section. Of course, we will have something from the
events, as I said, in Charlottesville. It’s not at all too early to be thinking
about how you want to handle that, if the chairs want to speak, who is going to
do what. In February, we really have to have very firm plans and have an agenda
and all of that worked out and agreed to.

If you have any issues or you want to discuss that in any way, Harry,
Debbie, and I are available.

Do you want to say anything more about this? Debbie is in charge of all of

MS. JACKSON: Thanks for mentioning the time element. Looking at needing to
have materials printed for the June event, it really starts to butt us up
against having things ready by March, February-March. So we might need a small
cadre of folks to continue to work on this intensively, more than the few
minutes we were able to give in the Executive Subcommittee session. I think I
would feel more comfortable in the fall if we had a little cadre of folks who
were really starting to hammer things out.

I did have a copy of the 50th celebration that we had. You see
the caliber of people that we had from the Secretary’s Office and all. It
really shows the kind of interest that started very early. We are working with
Jim and others to get a solid agenda going.

MS. GREENBERG: Great. Of course, Susan is updating the 50th
history, the 60th anniversary document, that will include input from
both the last few years that we haven’t actually documented in annual reports
and also from our event in Charlottesville. So we have a lot of pieces coming

Are any other members planning to have any kind of event between now and
then that might — I know, Judy, you had thought about it.

DR. WARREN: We are waiting to hear whether or not we are accepted. But
Connie Delaney and Judy Murphy, both of whom serve on ONC’s — Connie is on the
Policy Committee and Judy is on the Standards Committee. We have put together a
panel talking about how each of us is working in those committees in order to
educate nurses and informaticians.

We have a proposal in. We should hear within the next week.

MS. GREENBERG: And that would be where?

DR. WARREN: I believe it’s in Boston. It’s the ANIA CARING Conference, which
is a very well-attended — Carol just asked me if we had considered submitting
this into MEDINFO. MEDINFO is an international conference for health-care
informatics and next year will be in South Africa, I believe, in Cape Town.

MS. GREENBERG: We do have a global origin. As you know, last year I did a
poster at the WHO meeting. We’ll have that around, too, at the symposium.

We are still open to suggestions. The reason I said it would go all the way
through the summer is the exact date of the data users conference — every two
years, the NCHS does a data users conference. One of our most popular speakers
has been none other than Harry Reynolds, even when you were a subcommittee
chair, I think. The last two conferences, Harry has spoken.

We have had one NCVHS speaker in a larger session on standards. We are
planning a whole session on the National Committee, probably to pick up on each
one of these sessions — maybe a speaker on the privacy stuff, a speaker on the
standards stuff, a speaker on the populations, maybe, and then, of course,
quality. I forgot quality. We need something from quality at the symposium as

DR. CARR: Yes, we are planning on it.

MS. GREENBERG: You are planning on that.

DR. CARR: I don’t have the details yet.

MS. GREENBERG: Probably something may be coming out of the hearing.

DR. CARR: That’s what I’m thinking.

MS. GREENBERG: I’m sorry, I didn’t mean to forget quality.

So I’ll be contacting you about the data users conference. I think it’s the
third week in August.

Those are the things we have planned. Did I forget anything? I think it’s a
nice suite of activities. But we are open to additional activities. We hope the
members of the Board of Scientific Counselors — certainly you, Jim, but we
hope as many of you as possible — will come to our symposium. Tomorrow, when
you are meeting, if you have any other suggestions, we are open to them.

DR. FITZMAURICE: Marjorie, do we know where the symposium is going to be
held, the physical location?

MS. GREENBERG: Yes, it’s at the National Academy.

MS. JACKSON: I have it on the agenda. I have been putting it on the full
agenda, on the bottom, so that everyone will have it at the ready. It is the
second day of that June meeting, the 17th. That is

MS. GREENBERG: The data users conference is the week, I believe, of — I’ll
get you the dates.

MR. SCANLON: On the symposium, this will be held at the National Academy of
Sciences headquarters. It’s the new building on 5th Street. It’s not
the old building. So it’s based in Washington. Typically, the Academy likes to
have a speaker, as well, just to welcome everyone and acknowledge and recognize
the committee and the committee’s history. Hopefully, we will have some
luminaries from HHS. I assume we will talk about the NHII work as well.

MS. GREENBERG: Yes. I’m hoping the Standards Committee or — we need to work
out how we are going to do it. The two main things we showcased at the
50th were the NHII report and the 21st-century vision. A
lot has happened, obviously, out of that NHII report. I think we definitely
want to highlight that.

We’ll be working with the Executive Subcommittee on an agenda over the next
few months, so that we will really be able to lock this in by February.

The data users conference is August 16, 17, and 18.

MR. LAND: Is the anniversary on the 17th or the 18th?

MS. GREENBERG: It’s the 17th, I think. The National Committee is
the 16th and 17th. Is that correct? So it will adjourn,
at the latest, at noon. Then it will be, like, 2:00 to 5:00 or something over
at the National Academy.

MR. REYNOLDS: Anything else?

MS. GREENBERG: There is one other thing I just want to mention and call to
your attention. I know that we are really focused — and I assure you, my staff
is — on the implementation of ICD-10-CM. But there is, as we speak a,
quote/unquote, iCamp going on in Geneva at WHO these two weeks to launch the
alpha drafting process for ICD-11. I don’t want this to strike terror in your

MR. REYNOLDS: Those of us that are trying to get 10 done just burst into

MS. GREENBERG: Yes, I know. First of all, I will tell you that ICD-10-CM is
one of the foundations for ICD-11. Donna Pickett, whom I think most of you
know, is attending this iCamp to make sure that continues to be the case. The
goal is to have as seamless a transition from ICD-10-CM to ICD-11, which, I
would say, would not happen until about 2020 in any event.

But what’s really fun this year and this time around — and I think it’s
just such a beautiful example of how things have changed — when we developed
ICD-10, it was basically — a bunch of experts would get into a room and
whoever had the loudest voice would get their codes or whatever. Now this is
completely being done, of course, in the new electronic environment. That’s one
of the purposes of these two weeks, to really get the tooling environment
settled. Eventually this is going to be up on the Web and anybody can
contribute ideas and documentation for changes to the classification.

But also on YouTube, the next two weeks — and if anyone is interested, I
can send you the link — every night they are posting a videotape from the
iCamp to tell people what’s going on. I looked at the one this morning from
yesterday. It started yesterday. It’s really fun. Of course, I knew most of the
people, so it was exciting for me. But for any of you who are interested in
these classification issues and just want to see where we are now in the brave
new age, I think you would enjoy looking at the iCamp YouTubes. If you want the
link, let me know.

MR. REYNOLDS: Anything else?

DR. FRANCIS: We should post what happens down in Charlottesville on YouTube.

MR. REYNOLDS: Moving right along to the next agenda item — I have already
made clear that I’m not a past chair, unless I don’t do good down there, and
then I could be.

Now the readouts from the subcommittees. Let’s go Standards, Population,
Privacy, and Quality.

Agenda Item: Subcommittee Report-Outs

DR. WARREN: Today in Standards, we talked about our hearings in December.
What we are going to be doing is pulling together a set of hearings that is
going to be highlighting best practices for people beginning to implement 5010
and ICD-10, so that we can develop a document of best practices to put out
there for the community to use. We are trying to be a little proactive here.

So we spent a great deal of time talking about who we would want to hear
from. As you can imagine, we probably have four times the number than we have
slots available. We are looking at strategies for that.

We also began to identify the categories of questions that we want the
testifiers to move into. We will be working very hard for that, since that
testimony is probably only about 10 weeks away, which is far too quick.

The next thing we took a look at is, it’s time for us — actually, over time
— to write the HIPAA report that goes to Congress. We realized that we need to
write both the 2008 and 2009. So we have decided to put that into one report.
That will be worked on. We hope to have a draft — Marjorie says the beginning
of December. We are going to be very busy over the next several weeks working
on that.

I defer part of my report to Don. I attended the Population Subcommittee
yesterday. We had a wonderful time together. Population has come up with some
great ideas that really fit in with where Standards has been thinking. So I’ll
let Don talk about that.

DR. STEINWACHS: This is a collaborative effort, because we got Judy to come
to this meeting. We did lose Walter, our link into Privacy and Security. There
seemed to be this letter that you were obsessing about.

We spent most of the meeting talking about the interim report that we got
from Dan and from Gib, which really looked at the prior 21st-century
vision recommendations and, in a sense, boiled them down to three. They are
fairly complicated, but three. Bill gave me optimism. Bill said he thought they
really boiled down to two. I think, in great part, the idea is that as we move
forward, it would be very useful to have fewer but powerful recommendations

We began to talk about the timeframe, the input we needed to get to
something that would be a new report by June. That was sort of thinking in
terms of the 60th anniversary.

What came out of it were several things. One, to do the new report, we
really need to have the input of people from all the subcommittees. So one of
the recommendations that we bring to you is the idea that possibly at our next
meeting, which is in November, of this committee, we could meet as a committee
as a whole on this for the second day, or at least the latter half of the
that — but something that would draw on the expertise — and then even
invite in maybe some specific additional people. We talked some about the
person who is really the chief information officer within HHS — I think Larry
was the one who said that there is the expertise here. In great part, to try to
think about exactly what this report will look like, it seems to me we need to
come together.

One of the things Bill and I talked about was that the Population
Subcommittee, with our new member, Judy, and some others, would try to draft
and share with the Executive Committee and so on an outline of what this report
might be, so we would have something to discuss specifically, and then also use
that in planning what would be done with that second day or part of the second
day that we could get for this purpose.

Some other things came up which, to me, were very useful and exciting. One
was that maybe we ought to no longer talk about this in terms of health
statistics, but talk about the information needed to manage health and the
health system, or something that puts it as a much more user-friendly kind of
document. We decided that not everyone got excited about health statistics.
Everyone in this room does, and we just couldn’t understand why it doesn’t
occur for everyone else in the world.

The other was putting more attention and focus on the uses of health
statistics and then having that drive the discussion about the vision. There is
a lot of excitement certainly in the work that Dan and Gib did — that sense
that health statistics could drive into the clinical encounter; health
statistics can drive into the management and the evaluation of health-system
changes. There are a lot of ways in which we could talk about this that make it
come alive, I think, instead of the idea that here’s data and information, but
not linked closely to action and to outcomes.

Those were the things that I particularly took away. There was discussion,
too, about technology and the idea that technology is moving rapidly, and the
concept of being able to pull together diverse data sets. I think Judy was
talking about maybe private-sector models.

Then we also talked about, within HHS certainly, you doing the same thing.
Some focus on technology and the enabling capacity that exists now and will
exist even more in the future, to think of doing things with large, diverse
data sets, came up for discussion — something that Jim Scanlon had raised
earlier on, a year or so ago, with hearings on data for health reform. Are
there ways to look at private-sector data, other sources, so that you begin to
identify, possibly, emerging trends — this idea that this could be both a
private and public set of data, possibly?

Ed Sondik, who was there, was talking about some of the private data that
has actually been acquired and brought in. It would be great if this was an
area that had some private-public partnership, the idea of the private sector
redoing some things that help support the public good, and at the same time
maintaining their own value in that.

I think all of us got excited. I’ll let Bill add to this, and Judy or
whoever else.

DR. SCANLON: I think you really covered it, so I’m not going to add

MR. REYNOLDS: Any questions?

MS. GREENBERG: I think at the very end of our meeting yesterday, which was
very stimulating and interesting, we did kind of come to this realization that
we have now revisited the 21st-century vision for health statistics
with this phase one. Gib and Dan are going to make a few editorial changes,
whatever, to that, and then we will post that report as part of their
presentation. We are not sending it to anyone, but it will be up as part of the
agenda and minutes from yesterday’s meeting.

Now we are looking forward. We are no longer talking about revisiting. We
revisited it and it is now leading us to a vision for information for health in
the 21st century or something like that. I don’t think we have
settled on the date. We are kind of changing our terminology. I thought that
was a very good decision, so that we can be more forward-thinking. We have
looked at the extent to which some of the priority recommendations — what has
been done, what hasn’t been done — and now we are moving on. So I thought it
was good.

MR. REYNOLDS: Okay. Jim?

MR. SCANLON: I think that’s exactly the way I was hoping we would go. I’m
not even sure I would even link it to the previous report. I think folks
nowadays don’t talk about statistics or evaluation in terms of the type of data
they have. They are looking for information and data. It almost doesn’t matter
where it comes from. The quality is an issue, and availability and timeliness
and so on. So I think the desire to move away from statistics per se into some
broader data or information is probably a fruitful one.

The other thing is I would look at it more as not only uses, but
opportunities and challenges. It’s more than just an agency; it’s really the
health system. What do we see coming? We hope that electronic health records
and quality reporting and so on will bring us some additional capacities in the
future. Claims data — everyone turns their nose down at claims data. Yet it
has probably provided more of the administrative data than electronic health
records now.

So I think there are trends that are available. There are capacities that we
need to look at — it’s not just what the federal government holds; it’s what
other folks hold as well — and then looking at it in terms of opportunities. I
always thought the other report sort of looked backwards and was somewhat of a
1980s solution rather than a 2010 kind of solution. This is exactly where I
would go.

MR. REYNOLDS: Okay, good. John and Leslie, do you have anything to add?

MR. HOUSTON: We did the letter. We are happy about it. We spent so much time
on the letter, though, yesterday, crafting it, that we did not really talk
about next steps. Walter brought up some stuff this morning. We plan on having
a conference call, though, to talk about what we want to do next. We did have
some items that we had shelved in lieu of the letter, but had thought of maybe
doing next steps. We are going to dust that off and recirculate it. Hopefully,
over the next month or so, we will have an idea of what direction we want to
take for our next inquiry.

DR. SUAREZ: May I make a general comment? I’m not sure how many of you are
aware that one of the key steps that is being taken by ONC, by HITSP, by others
with respect to privacy — also security, but privacy particularly — is the
definition of what we are calling now consumer preferences. There is a lot of
development around that. We heard some testimony about it at the HIT Policy
Committee on Friday. There are at least three groups involved in developing
documents related to consumer preferences.

The space we are working on primarily is three things:

• Defining how to capture, collect, codify, and allow the modification
of consumer preferences. One of the consumer preferences is consent, privacy
consent. There are other consumer preferences, including things like advance
directives, DNR, others.

• Then how to package that electronically and transfer that so that it
can be exchanged in an interoperable way.

• The third thing is how to execute that consent or consumer

So there are three groups at least that are working on that. Within HITSPE
there is a group working on it, ONC is developing a white paper on it, and NHIN
is also involved in testing consumer preference codification.

Besides consumer preference, there is another major element that is starting
to come back, which this committee has discussed, related to privacy. That is
what is now being referred to as segmentation of data, which means basically
the classification and ability to manage selected data for consent and for
protection by consumers, including sensitive data, highly sensitive data, more
sensitive — different ways of saying the same thing.

Just to comment, that was one of the suggestions I have made as one of the
areas that —

MR. HOUSTON: We can bring it up when we have the conference call.

DR. SUAREZ: I just wanted to make a general comment here that there is that.
I just came back from HL7 meetings Sunday and Monday, where there are
committees already defining the standard codification for consent directives
and confidentiality codes, things related to this. We want to make sure that
the policy side is lining up correctly with the technical codification side.

MS. GREENBERG: Actually, there might be some issues for the symposium.

MR. REYNOLDS: Okay, Quality.

DR. CARR: We have had a number of calls over the last couple of weeks in
preparation for our hearing, which is called “The Meaningful Measure
Supply Chain: Building Measures that Matter for Our Nation’s Health and
Health-Care Priorities.” The goal of the hearing is to address four

• How do we approach building meaningful measures?

• What is the current process for developing measures? Does it
adequately address measure development for key national priorities and

• How do we introduce new data sources — clinical data from EHR,
user-generated data, et cetera — into the measure-development process?

• How do we maintain and update measures? What are the health IT system

Day 1 is focusing on just the meaningful measure supply chain: what makes a
measure meaningful, current measure development, choosing the right things to
measure, the development process as it is today, and adoptability. On the
second day we focus on national priority measurement. That includes care
coordination, disparities, measures of value and efficiency, and measures of
integration, population health, and health status.

MR. REYNOLDS: That’s an exciting hearing that is coming up, kind of setting
some of the vision as you move out to the 2015 timeframe, which is kind of
going to be the light that a lot of these things can go to. I think that’s
pretty exciting.

With that, that completes everything. I thank everybody for your attention.
I think the fun thing about the agenda this time was that we had a chance to
talk to each other a lot. We covered a lot of broad subjects. We got a lot of
good stuff done. I thank you for that. We’ll see you in November.

(Whereupon, at 11:25 a.m., the meeting was adjourned.)