[This Transcript is Unedited]



September 9, 2005

National Center for Health Statistics
3311 Toledo Road
Hyattsville, Maryland

Proceedings By:
CASET Associates, Ltd.
10201 Lee Highway, Suite 180
Fairfax, Virginia 22030

List of Participants:

  • Simon P. Cohn, M.D., Chair
  • Marjorie S. Greenberg
  • Jeffrey S. Blair, MBA
  • Justine M. Carr, M.D.
  • John P. Houston, J.D.
  • Stanley M. Huff, M.D.
  • A. Russell Localio, Esq., M.A.
  • Harry Reynolds
  • Carol J. McCall, FSA
  • Mark A. Rothstein, J.D.
  • Donald M. Steinwachs, Ph.D
  • C. Eugene Steuerle, Ph.D
  • Kevin C. Vigilante, M.D.
  • Paul Tang, M.D.
  • Judith Warren, Ph.D
  • Virginia Cain, Ph.D
  • Michael Fitzmaurice, Ph.D
  • Maya Bernstein, J.D.
  • Steven Steindel, Ph.D
  • Marietta Squire
  • Donna Pickett
  • Wanda Goban-Jenkins


  • Full Committee Meeting — Plenary Session
  • Draft Letter Report
  • AHRQ — Reports on Health Disparities and Quality – Ernest Moy, M.D.
  • Reports from Subcommittees and Workgroups
    • Subcommittee on Privacy & Confidentiality – Mark A. Rothstein
    • Subcommittee on Standards and Security – Stanley M. Huff, M.D.
    • Workgroup on Quality – Robert W. Hungate
    • Subcommittee on Populations – Donald M. Steinwachs, Ph.D.
    • NHII Workgroup – Simon P. Cohn, M.D.
  • Future Agendas for NCVHS Meetings – Simon P. Cohn, M.D.

P R O C E E D I N G S [10:38 a.m.]

DR. COHN: Good morning. I want to call this meeting to order. This is the second day of meetings of the National Committee on Vital and Health Statistics. The National Committee is the main public advisory committee to the U.S. Department of Health and Human Services on national health information policy.

I am Simon Cohn. I am the associate executive director for health information policy for Kaiser Permanente and chair of the committee. I want to welcome other committee members, HHS staff and others here in person and, of course, welcome those listening in on the Internet. Of course, as always, we want to remind everybody to speak clearly and into the microphone.

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

I want to begin by observing that I have no conflicts of interest.

MR. HITCHCOCK: Good morning. I am Dale Hitchcock, sitting in for Jim Scanlon. I am from the Office of Science and Data Policy at HHS.

DR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention, liaison to the full committee.

DR. HUFF: Stan Huff with Intermountain Health Care in the University of Utah in Salt Lake City, a member of the committee. I have no conflicts with subjects that will come before the committee at this session as far as I know.

MR. HUNGATE: Bob Hungate, Physician Patient Partnerships for Health, a member of the committee. No conflicts.

DR. CARR: Justine Carr, Beth Israel Deaconess Medical Center, member of the committee. No conflicts.

MS. MC CALL: Carol McCall, Humana, member of the committee. No known conflicts.

DR. DEERING: Mary Jo Deering, National Cancer Institute, lead staff to the NCVHS Workgroup on the NHII.

DR. VIGILANTE: Kevin Vigilante, Booz-Allen & Hamilton. No conflict.

DR. STEINWACHS: Don Steinwachs, Johns Hopkins Bloomberg School of Public Health. No conflicts I am aware of.

MR. LOCALIO: Russell Localio, University of Pennsylvania School of Medicine and a member of the committee and I have no conflicts.

DR. TANG: Paul Tang, Palo Alto Medical Foundation, member of the committee. No conflicts I am aware of.

MR. REYNOLDS: Harry Reynolds, Blue Cross Blue Shield of North Carolina, member of the committee. No conflicts.

MR. HOUSTON: John Houston, University of Pittsburgh Medical Center, member of the committee. No conflicts.

MR. ROTHSTEIN: Mark Rothstein, University of Louisville School of Medicine. No conflicts.

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

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

MR. CARROLL: Fred Carroll(?), American Dental Association.

MS. PICKETT: Donna Pickett, National Center for Health Statistics, CDC and staff to the Subcommittee on Standards and Security.

MS. JENKINS: Wanda Govain(?) Jenkins, National Center for Health Statistics, CDC and staff to Standards and Security Subcommittee.

MS. BERNSTEIN: Maya Bernstein. I am from the Office of the Assistant Secretary for Planning and Evaluation. I am lead staff to the Privacy and Confidentiality Subcommittee.

MS. POKER: Anna Poker from AHRQ. I am staff lead to the Quality Subcommittee and staff to NHII.

MR. ROHDE: Dan Rohde(?). I am with the American Health Information Management Association.

MS. BLEDSOE: Marianna Bledsoe. I am with the Office of Science Policy in the Office of the Director, NIH.

MR. DE CARLO: Mark DeCarlo with the Blue Cross Blue Shield Association.

MS. BURWELL: Audrey Burwell from the Office of Public Health and Science and lead staff to the Subcommittee on Populations.

MS. KANAAN: Susan Kanaan(?), writer for the committee.

DR. COHN: Okay. Well, thank you for joining us. We are going to be doing some moving around of the agenda, based on a variety of issues that we won’t get into. As soon as we are done with sort of a quick agenda review, we will get into sort of the action items, which I think makes sense. From there we will be having a presentation by Dr. Ernie Moy on the AHRQ Report on Health Disparities and Quality.

Then after probably what will be an abbreviated lunch break, given I think most people will have lunch being brought in, we are going to start on subcommittee reviews and we will lead off with Mr. Rothstein, putting a — sort of reviewing the privacy work and I think the results of our last couple of hours talking about the privacy letter that may very well be coming forward in November.

Agenda Item: Review of Draft Letter Report

So, hopefully, that works for everybody. Now, there are actually two action items, at least two proposed. I know you have one in front of you. But I wanted to start off by observing, I think, as we mentioned yesterday, that our executive director obviously has had a promotion at HHS and with your leave and approval, we wanted to actually create a letter acknowledging this promotion and, obviously, thanking him for his service, which, of course, will continue, but is that okay with everyone? Do I have a motion to that effect?

[There was a motion for approval made and seconded.]

All in favor?

[There was a chorus of “ayes.”]

Okay. So, we will take care of that.

The next item is really looking through the letter to the Secretary on personal health records. We went over this extensively yesterday with the full committee. I want to thank you for all your input. We then met as the NHII Workgroup and reviewed the modifications.

I think we will walk everyone through them. Hopefully, they will be to everyone’s liking and satisfactory and then we can sort of discuss any additional issues. I guess I am hoping that we can do that in a timely fashion. I suspect that we will be a little late for Dr. Moy’s presentation, but hopefully not significantly so.

MS. GREENBERG: I have checked and he is flexible.

DR. COHN: Okay. Good.

So, let me just walk through. You all have copies in front of you of basically a version showing the changes that we made from yesterday’s version. We will just sort of walk through them. First of all, on page 1, as we commented, we added the word “dimension” in addition to areas to clarify the fact that we are talking about both being the same and we have also included the fact that the areas we are describing, population, personal and provider dimensions or areas are the ones we are describing as equally important. That is essentially wordsmithing.

Page 2 and page 3 actually has no changes, nor does page 4. I would just comment as we move into page 5, we now have titles for the recommendations, which we will review afterwards if there is anybody who has any minor wordsmithing on them, but I think they fundamentally look fine.

The first major change has to do with the key potential benefits of PHRs and PHR systems. On the advice of the committee, we have now collapsed the roles of consumers, patients and their caregivers. We have also, I think, moved around some of the benefits, as well as removed a couple of the benefits that were duplicative.

Now, we have also deleted some of the verbiage related to marketing and instead used terms like “education” and all of that, which I think we had all discussed previously. We have also added a box that says societal population health benefits and describe three bullets in relationship to that.

Now, there is some additional wordsmithing changes. I mean, people stop me if there is a major issue as we sort of go through here, but we have added some additional wordsmithing on page 6 that basically was wordsmithing, talking about members, patients or employers. Now, as we move into privacy, there was some minor wordsmithing, talking about PHR vendors not covered by HIPAA, just to clarify that. And we actually got rid of the word “consequently,” which was certainly long overdue.

We have added a new paragraph introducing the recommendations, which reads, “The recommendations below indicate some initial steps that should be undertaken to address these concerns. However, the Committee believes that these issues are entwined with, though not necessarily identical to the privacy and confidentiality issues that must be addressed within the context of the National Health Information Network. The NCVHS Subcommittee on Privacy and Confidentiality has been conducting hearings on privacy and the NHIN and additional recommendations will be forthcoming.”

We will change that to read “on privacy and confidentiality and the NHIN and additional recommendations will be forthcoming.”

Everybody okay with that? That is sort of the introductory paragraph there. Then we obviously have put labels on each of the recommendations to clarify them. On page 9, I think we have had a variety of just small wordsmithing changes, which I don’t think are worthy of changing “members” to “individuals” and things like that.

Now, on page 10, we have —


DR. COHN: Yes.

DR. STEINWACHS: I am having a compulsive disorder. See “secondary uses” in line 5, I would just — if you would do me the favor of sort of scanning all the use of secondary use and make a decision if it is clear because I was — I told Simon I was kidding in the last meeting I was in, that from my point of view, a secondary use is any use you don’t care about. So, everyone looks at this and reads “secondary use” probably differently, unless, you know, you are very clear about what the secondary use is.

DR. COHN: Okay. And I think we had talked about removing that from Recommendation 5.

DR. STEINWACHS: Just check and see.

MS. MC CALL: I would also say that the immediate sentence following in line — actually preceding in line 4, “This notice should specifically include… —


DR. COHN: We are looking at page 9, Recommendation 6.

MS. MC CALL: I am in 9, Recommendation 6, line 4 and I am in the sentence that begins “This notice should specifically include a full description of…” So, if we remove the use of the term, then that sentence is kind of a hanging chad, as it were.

DR. STEINWACHS: I agree. You either have to replace it or you have to define that any use other than as for patient care or something like that is a secondary use.

MS. GREENBERG: For any purposes?

DR. STEINWACHS: I would leave it to Simon to figure out what is the right now. I think the word “secondary” I found not very helpful and frequently confusing.

DR. DEERING: But can I be clear, all we are doing is deleting the word “secondary.”

MS. GREENBERG: There are two places. One you can just delete it. The other you are going to have to say for any purposes without — or something like that.

DR. DEERING: May not be used without the express consent.

MS. GREENBERG: We could take out “purposes.”

DR. DEERING: I know. And I am taking out “for secondary purposes.”

DR. COHN: So, I think we have handled that.

MR. HOUSTON: There is going to be another round of wordsmithing on this because I noticed I think Word automatically changed EHR to HER.

DR. DEERING: Line 42. I got it.

DR. COHN: He is noticing some spelling — some automated spelling errors because of spell checkers.

DR. STEINWACHS: In many languages, you know, words are either masculine or feminine. So, maybe it —

DR. COHN: And certainly we will proofread, make any — I mean, if there are any misspellings, you know, transpositions, such as you are describing, we will check those. Certainly, even if we pass this, if you look at any of the way these things are described in terms of the titling and you find some major issue with them, just let us know because it will take us a couple of days to obviously review all of that stuff and finalize the letter.

So, are we okay with privacy at this point? Okay. Let me move then onto security. The security Recommendation 4 now reads “PHR systems should include functionality that…” — and it should be “that provides,” not provices

— “that provides a consumer with the ability to control who accesses the consumer’s information within the PHR.” It is probably “who accesses his or her information within the PHR.”

“This would include the ability for the consumer to provide access to specific subsets of…”

DR. STEINWACHS: Simon, where are you? I am sorry.

DR. COHN: I am looking at page 10.

MS. GREENBERG: I think it means to protect access to specific subsets —

DR. COHN: Maybe it is control access? I think it is control access.

“PHR systems should include functionality that provides a consumer with the ability to control who accesses his or her information within the PHR. This would include the ability for the consumer to control access to specific subsets of information within the PHR.” Are you okay with that?

MS. GREENBERG: I wonder if though — that seems redundant. I wonder if — because if they can control access, they can control access. Do you want to say “to restrict access to specific subsets”? Otherwise, it seems like a —

DR. COHN: Yes. John Paul, are you okay with that, restrict access?

MR. HOUSTON: Yes, I think that is better.

MS. GREENBERG: You say they should be able to control access. So, that would include all access. So, it is a redundant sentence, unless you want to emphasize that they could restrict access to specific subsets.

MR. HOUSTON: It sounds good.

DR. COHN: Are we okay with security so far? Okay.

Under “Interoperability,” we have done some moving around of sentences, you know, some underlying sentence at the end of the first paragraph, which reads, “Until PHR systems are capable of widespread exchange of information within EHRs and other sources of personal and other health data, their full potential will not be realized.” It is basically a sentence we had in another paragraph that just didn’t fit there. So, it fits appropriately here.

So, that is not a new paragraph, but something we just put in. Now recommendations —

MS. GREENBERG: Well, that was somewhere and you just moved it.

DR. COHN: Yes, we just basically moved it.

The recommendations, after some discussion yesterday, we decided to basically just wordsmith Recommendations 11 and 12, as opposed to deleting or otherwise trying to consolidate them and we changed them a little bit. Let me just read them. Recommendation 11 now reads, “Consistency of EHR and PHR standards,” and it says “HHS should encourage standards development organizations to adopt standards for the PHR that are used to promote interoperability of EHRs wherever possible.”

That doesn’t quite sound right.

MR. HOUSTON: It should be “with” rather than “of” EHRs.

DR. DEERING: The point that at least I picked up yesterday is, first of all, the point was we are trying to be consistent with EHR standards and then we got into a long discussion about what EHR standards. So, these refer specifically to standards that are discussed about interoperability of EHRs. So, we are just saying where those standards exist or are being developed for EHRs, those are the standards that should be used for PHRs. So, that was the intent of this sentence.

DR. COHN: It just sounds awkward.


DR. COHN: We agree with what you are saying.

MS. GREENBERG: I agree with the statement. It just is awkward. You could either say to encourage standards development organizations, to adopt for PHR those standards that are used to promote interoperability of EHRs wherever possible. Does that sound better? To adopt for PHRs those standards that are used to promote interoperability of EHRs, wherever possible.

DR. STEINWACHS: Simon, are you ready to go on to something — another one?

DR. COHN: I just want to make sure that we are okay on that one. Mary Jo, do you have that?


DR. COHN: Okay. So, 11, we just — I think will parallel that.

DR. STEINWACHS: It shows my ignorance, but there could be other people in that category, who read this. What does non-repudiation mean in this context?

MS. GREENBERG: Where are you?

DR. STEINWACHS: I am in 10.

MR. BLAIR: Non-repudiation means that the individual that receives the document cannot deny that they received the document.

DR. STEINWACHS: If it is important, I would try and find some way to put it into a little more lay language, I think, if that is possible. Maybe it isn’t. Maybe you just have to go with it.

DR. COHN: Maya, did you have a comment on this?

MS. BERNSTEIN: Or that the person who sent the document is actually the author of that document.

MR. BLAIR: That is a different thing than non-repudiation.

MR. HOUSTON: We do use “non-repudiation” in two places in this, as I recollect.

DR. STEINWACHS: Maybe footnote the first time or something.

DR. COHN: John Paul, can you provide us with a —

DR. DEERING: If I could note that on the very last page, line 18 or 19, we added the clause “non-repudiation of the source and recipient of the data.” Line 18 and 19.

MS. GREENBERG: Maybe that needs to go here.

DR. DEERING: So, maybe if that phrase seems to help — page 14.

MR. BLAIR: Non-repudiation deals with the recipient not denying that they received it.

MS. GREENBERG: This is the last page 14, line 18.

MR. HOUSTON: No. Non-repudiation has more meaning than that.

MS. GREENBERG: Maybe we need a footnote.

DR. DEERING: If someone would help me, I understood it was on both ends. So, whatever.

MR. HOUSTON: Non-repudiation also means that the document itself hasn’t been changed and that the person that is sending it can’t deny the fact that not only the document was sent or received, but that contents of the document are in fact as purported to be.

MR. BLAIR: We will go with whatever definition —

MR. HOUSTON: We will find a standard —

DR. STEINWACHS: Simon, it will only take about a half a page footnote to handle this.

DR. COHN: So, Recommendation 12 will — let’s see, “HHS should encourage standards development organizations to identify essential data sets for PHR systems, adopting standards used to promote interoperability of EHRs whenever possible.

DR. DEERING: Simon, a couple of observations grammatically. I would say “adopting standards that are used to promote interoperability of…” Take out the “for.” And then it should be “wherever” instead of “whenever” or at least it has to be parallel.

MS. GREENBERG: What about the data sets? I think you would at least have to say again adopt, also adopting or something to acknowledge that you have just said something like that above.

DR. VIGILANTE: If we can perhaps, as Marjorie said, sort of referring to this notion that adopting standards, as previously noted, that are consistent with EHRs, rather than going into a whole interoperability phrase. It just seems cumbersome to be saying it twice.

DR. DEERING: Do we just put a period after “systems” and strike the whole second half? Because we are talking about data sets not the standards behind them?

DR. VIGILANTE: That is what I would do.

MS. GREENBERG: In fact, I don’t know that if that is what you are talking about is data sets and not the standards or the elements and all that, then it is really not exactly an accurate statement because there really aren’t necessarily essential data sets that have been developed for the EHR.

DR. STEINWACHS: I may be following on Marjorie — it wasn’t clear to me what identifying an essential data set really meant. Marjorie is talking about it as sort of recommendations like for minimal data sets. It would be helpful to make sure that we are all clear about what the committee means by identifying —

DR. COHN: Since I don’t know what a minimum data set means either and I don’t know what core data set means either, so are these all —

DR. STEINWACHS: Are these data sets that people are actually using and, therefore, you want those or —

MS. GREENBERG: Essential is an odd word. I agree.

DR. STEINDEL: Now that I see this in print, we don’t want to say — we want to say data sets for PHR systems that are also used for EHR systems. The standards used to promote interoperability for EHRs really doesn’t fit in the data sets.

MS. GREENBERG: It doesn’t fit there, yes.

DR. STEINDEL: Because we are not really talking about data — the standards themselves. We are talking about the data sets.

DR. COHN: So, we are agreeing that rather than a comma, there should be a period, right?

DR. STEINWACHS: And you need to expand it —

DR. DEERING: Let me read what I think —

DR. STEINDEL: The way it was originally.

DR. DEERING: What Steve would say is “HHS should encourage standards development organizations to identify essential data sets for PHR systems, adopting data sets that are used for EHRs whenever or wherever possible.

DR. STEINDEL: Yes. That sounds good.

DR. DEERING: So, that is Steve’s nomination.

DR. COHN: So, are we okay with that then? The question is essential versus core versus — we use up in the body of the text here, we had talked about core —

MS. GREENBERG: Do we want to take out any adjective if we can’t agree on the adjective? To identify data sets for PHR systems that —

DR. COHN: I think, yes. Since Don and I assume we know what we are talking about now, this would help.


DR. TANG: Steve, I didn’t get what you meant by data — to use data sets that are standard for EHRs.

MS. GREENBERG: Because I don’t know that there are any. I would say that are consistent for standards used or that are —

DR. TANG: No. For example, if problems were coded in SnoMed and meds were coded in RX Norm, you would suggest that you use the same coding or when you —

DR. STEINDEL: No, if we like as an example, there was a data set that was created that was called problem list, that would contain what we would expect to see in a problem list — for the EHR, that would transfer and be used in a PHR as well. That is not exactly the best example because that is probably not a one to — you know, something that would be used in both, nor do I think we could ever develop a data set for a problem list, but that is what I essentially mean.

History might be a good one.

PARTICIPANT: Notable history or medication history.

DR. COHN: Medication history would be a better one actually.

DR. STEINWACHS: It is not an issue of coding.

DR. COHN: It is an issue of what the data elements are.

MR. HITCHCOCK: I sort of got shot down on this yesterday, but I would like to revisit it. The core data set is like a last century sort of term or something. I like system content better myself and I think it allows you for more flexibility and then there is more — I think we are really talking about system content.

MS. GREENBERG: You are talking about system content.

MR. HITCHCOCK: The next recommendation actually talks about standards that adopt data content.

DR. STEINWACHS: Steve, is that the same for you?

MS. GREENBERG: Well, the thing is you have up here agreement on a specific minimum or core data set could help promote interoperability. Are you trying to respond to that or not?


MS. GREENBERG: Or maybe what you want to say is to the extent that standards development organizations identify minimum or core data content, that content should be consistent with that use in EHRs.

DR. DEERING: No. If you think of the full array of potential data in a complete EHR and then the goal here is to say is there somewhat less than that that is necessary here.

MS. GREENBERG: I think of as a core or minimum data set.


MS. GREENBERG: I am back in the old century, but I was born in the previous century. What can I do?

DR. DEERING: I would still nominate that we simply then leave the first half of the sentence and put almost the word “essential” back with or without the word “essential” and that it simply read “HHS should encourage standards development organizations to identify data sets for PHR systems.”

DR. STEINDEL: I want the unanimity to EHR.

MS. GREENBERG: Consistent with the standards used in the EHR.

DR. STEINDEL: Consistent with those developed for EHR —

DR. DEERING: Consistent with those developed for EHR wherever possible.

DR. STEINDEL: That would be fine.

MR. BLAIR: Do you want to give the example of like medication history?


DR. TANG: So, is essential data clearer than data sets?

MS. GREENBERG: No. I mean, essential is in the eyes of the beholder.

DR. TANG: But data versus data sets, I guess I am having a little trouble with this.

DR. STEINDEL: I would prefer in this context to leave out the word “essential” and just say “data sets.”

MS. GREENBERG: What do we have now?

DR. DEERING: It would read then — we could just say “data,” “data fields.”

DR. STEINDEL: No, no, no. It is a collection of data.

DR. DEERING: Okay. HHS should encourage standards development organizations to identify data sets for PHR systems, consistent with those used for EHRs wherever possible.

DR. COHN: Does that make sense?

MS. GREENBERG: I think that is all right. Are you okay with that, Stan?

DR. HUFF: Yes.

DR. COHN: Are we okay at this point?

DR. STEINWACHS: I am willing to go ahead with it. I think you ought to note that I think there are still sitting around the table, who don’t think they really understand when you say those words to them, what Steve means or what the subcommittee means. I think you just have to be prepared that someone is going to probably mean to be able to elaborate.

MS. GREENBERG: Maybe what you are saying is it needs a little more explanation. I don’t know and I don’t know whether a footnote is appropriate, but I think like as Steve was saying, say an EHR has a whole long problem list and you would want maybe an abbreviated problem list in your PHR, but that —

DR. STEINWACHS: I would want my problem list. I wouldn’t draw in the physician’s problem list.

MS. GREENBERG: But you would want that —

DR. COHN: Okay. We will consider whether we need a footnote that says something like, e.g., medication history. Is that something — does that help? A specific limited data set.

DR. STEINWACHS: It needs something to make it come alive. It is a big point actually to make.

DR. VIGILANTE: It strikes me as an —

DR. STEINDEL: It is an extremely important point to make, especially now and what we were trying to avoid with this statement is delicately danced around the question of CCR versus CDA. You know, that is why I am a little leery of putting in —

MS. GREENBERG: That was really clear to some people at the table.

DR. STEINWACHS: I know what continuing care record — CCA is the —

DR. STEINDEL: CDA is the HL7 —

MR. BLAIR: Let’s leave it without the example.

DR. COHN: Realizing, Don, that we are sacrificing clarity, but I think given that we are trying — this is not the purpose of this paper, of this document, to try to resolve this issue. I think it is more saying that there needs to be some work done in this area and we will try to remain agnostic at this point on exactly the tools and approach.

DR. HUFF: Simon, the only thought I had on this since yesterday, I was trying to figure out what the core difference was between what we were saying yesterday, my position and Mary Jo and Margaret. I think we are just thinking of two different things in a sense. The thing that I object to in terms of core data sets are standards that say for every patient you will do X because those things basically mean for almost every patient, you are going to want to chart something in addition to that and that minimum set is actually not applicable across the board.

So, one way or the other, you are always missing the mark. What I agree a hundred percent with creation of are disease and situation specific kinds of data that you want to collect. So, if you want to say, you know, if we are going to do a study on diabetics, we want to know their hemoglobin AIC. We want to know their glucose. We want to know their monofilament line test results.

That is essential if you are going to have comparability of data. So, those focused very content situation specific specifications of what you want to collect, I am a hundred percent in favor of, but basically saying everybody who comes to a nursing home has to have these 50 things done, it always misses the mark one way — it either makes you collect things that you don’t want to collect or it is not sufficient for what this particular patient needs. That is the only instance — that doesn’t help so —

MS. GREENBERG: Can I just ask are you also comfortable with a core demographic set?

DR. HUFF: Sure.

DR. DEERING: Remember, this is for voluntary PHR. This is not for the EHR.

DR. HUFF: I know. So, it is — I just wanted to say it. It is not relevant for changing this paragraph.

DR. COHN: I am not sure exactly what to do with your —

DR. HUFF: Nothing. It was just a comment. I wouldn’t change anything that you said here in terms of wording or anything else.

MR. BLAIR: Can we indicate that — or I certainly would vote for approval of the letter. Can I leave you with that when you vote?

MS. GREENBERG: Yes, I think you can. We are almost through it.

DR. COHN: So, are we okay with Recommendation 12 at this point? We went around and around on this one yesterday. I don’t hear much new wisdom coming out of this one.


So, are we okay with this at this point?

PARTICIPANT: Could we read what you have now, Mary Jo?

DR. DEERING: HHS should encourage standards development organizations to identify data sets for PHR systems, consistent with those used for EHRs wherever possible.

DR. COHN: Okay. So, I think we are done with that under federal roles, other than putting titles in. Actually, as you notice, we removed as was approved yesterday one of the recommendations because it was redundant with Recommendation 18. Then under advanced research and evaluation on PHR systems, we have changed the first title now to read “Consumer Research.” And we tried a variety of other titles, but that one seems to have fit the best.

I think beyond that the only thing we did under “Next Steps” is that we, I think, moved up the role of CMS that we would be looking at around next steps and otherwise left everything else the same.

Now, comments about this, questions? Obviously, if we move to approve, this is subject to wordsmithing changes, correction of spelling, further refinements of titles of recommendations, but nothing substantive would be changed after that.

Now, let me just do a count here just to make sure that we do, indeed — so, we are just doing a quorum count here and we are, indeed, okay. Any questions or otherwise? John Paul, do you have anything on this one?

Okay. That is fine. Privacy infuses all of our recommendations

DR. STEINWACHS: Simon, one little thing. Recommendation 20, line 9, page 14, it talks about in the chronic disease community, that seems to me not a helpful — I think you just drop “community,” “pilot studies of PHR usage in chronic disease to evaluate…”

DR. COHN: So, PHR usage in chronic disease.

DR. STEINWACHS: Yes. I am not sure where the chronic disease community is, but I am sure someday I will join that community and along the way —

DR. DEERING: And it will be a continuing care community.

DR. COHN: Thank you for that. That actually does improve readability and understanding.

Anything else on this letter? Okay. Do we have a motion for acceptance?


DR. COHN: Second?

[The motion was duly seconded.]

All in favor?

[There was a chorus of “ayes.”]


[There was no response.]


[There was no response.]

Okay. The letter is passed. Thank you very much.


I think at the end of the day, we will take a couple of minutes and reflect on processes and see if we can come up with some ways to make the letter — excuse me. I am sorry.

Okay. Well, we have ten people here.

MS. GREENBERG: Fine. Then we have a quorum. Because nine is not a quorum. She feels we should count our vacancies.

DR. COHN: That is fine. We did.

But anyway I think at the end of the day, we will sort of reflect — I mean, my own view is that obviously it is important that we do, you know, extreme due diligence on the letter that comes out of the committee and I think generally the work that we do, I think, improves understanding, as well as I think points out errors and sort of ambiguities that I think sometimes we put in unwittingly. However, I think we do need to come up with ways going forward to make sure that we are surfacing the issues, hopefully, prior to the full meeting so that we can start with as clean a document as possible.

I think the intent was here certainly to have done that, but I am still reflecting on even given that work on wordsmithing there was. We will talk about that sort of at the end.

Mary Jo, I wanted to just take a moment and thank you very much. This has been —


DR. DEERING: Thank you, all.

MS. GREENBERG: Sometimes it has been said that this committee needs dedicated staff and we certainly have it.

DR. COHN: Okay. Well, with that, do we have Dr. Moy in? Is he present? Well, good. Thank you and I apologize for having us run late, but, obviously, our next agenda item is to hear from Dr. Moy and thank you for joining us.

Agenda Item: AHRQ — Reports on Health Disparities and Quality

DR. MOY: My pleasure. I thought I would give you an update of where we are with this year’s quality report and disparities report.

It has been awhile since I spoke to any of the groups, I think, about this. I thought I would give you a couple of slides about a reminder of what these reports are. AHRQ, of course, has a long history of work in the area of quality and disparities. The agency has been tasked by DHHS to lead the quality improvement initiative, but, in addition, we also have this charge from Congress. This is the actual congressional mandate for the production of these two reports. I will point out a couple of issues.

The quality report is supposed to be about national trends and the quality of health care and we take that very literally. You will see in the previous reports as well as the current report that the main things focused on is trends in health care quality. Is it getting better or is it getting worse?

You see the language for the disparities report and, again, I will point out a couple of issues. First, again, I will focus on health care delivery, so it is on health care and not health and the two things we focus on are racial factors and socioeconomic factors, so racial disparities and socioeconomic disparities.

We have always thought of these two reports as paired reports for a number of reasons. One, it is easier to produce them together. Also, we think the two concepts are integrally related. They are snapshot documents, the report, again, a snapshot of quality care, the disparities report a snapshot of disparities in care. The two reports use the same measures of quality of care. So, you should be able to look from one report to the other and see the exact same measures of quality of care.

In the disparities report, we add a second dimension of access because you really can’t talk about disparities without also incorporating the issue of access to health care. Variation in the quality report that we report on is variation in geographic regions, typically states. In the disparities report we, of course, talk about variations in populations, most usually racial and socioeconomic variation.

There is another reason why we try to link disparities and quality together. We think that they are integrally related. I think people are quite familiar with the quality chasm, the gap between actual care and the ideal care we think Americans deserve and the many barriers that exist that create that chasm. In the disparities report, we recognize the different chasm, which is a chasm between actual care received by disadvantaged populations and the actual care received by advantaged populations. We call that the disparities chasm.

We think if we put these two together, you probably get a big opportunity here for improvement, probably the widest chasm that exists, of course. And we think that these are good opportunities for quality improvement activities and together we think that the report should be interpreted as identifying those areas where quality improvement is in greatest need.

These are some of the high level goals of the report. Again, the primary audience is congressional and so we focus on the national level. We provide that snapshot issue, the snapshot of quality and disparities. Because they are annual reports and because of the charge, we think one of the most important elements is the tracking function. How are we doing? How are we changing over time? Are we improving over the original baselines in terms of quality and disparities? And that is a big focus of it.

But another secondary issue we think is very important that we emphasize in the two reports is not just where we have information to provide, but also where we don’t have information to provide. I think maybe this group has some interest in that particular area. So, parts of the report deal with where we have insufficient information to discuss quality or disparities intelligently because of lack of data, because of lack of measures. I will get into that a little bit more after this about things that we are doing now and things that we plan to do in the future.

We, of course, want to emphasize the interdependence of quality and disparities because we think the problems are interrelated. We also think that the solutions are more efficiently done if they are well integrated. I think we see a lot of movement in that direction. Organizations are increasingly trying to tackle these problems together. At least that is one of our observations.

Probably the big thing that we do is we are like the constant nag to society, I think. We are here nagging and saying, well, there are still quality problems. There are still access problems. There are still access problems. There are still disparities problems. We try to raise awareness at the national level.

For state and local providers, we have less. That is just the nature of this report, which again focuses on national trends, but we do think that there is some value here and we make all of the tools and methods that were developed to generate these two reports available on our web sites so that if state and local and provider entities wanted to adopt those modalities of measurement, they could. If they did so, they would then have national benchmarks against which to compare and, again, we have been told by states they use it for generating local awareness, just, again, the quality access and disparities kinds of problems.

The reports are not rocket science. You will see that we cover your kind of typical — your typical topics for a quality and disparities kind of report. We covered the four major domains of quality of care, effectiveness, safety, timeliness, patient centeredness and we kind of cover major domains of access to care, problems getting into the system, navigating the system, perceptions of care and health care use.

We use everything that is available in DHHS and if you look at No. 4 — no, I am only kidding — this is meant to portray that the philosophy of these reports was to try to develop good measures and then go and look for data to then inform those measures. The consequence of that is we have tons and tons of data sets. When we started this, we didn’t want to start with data sets and then present what could be abstracted from those few data sets.

So, we have tons and tons of data sources that flow into this. You see the major categories there. There are surveys of individuals. There are surveys of facilities. There are vital statistics and there are the surveillance systems. I think we literally use everything that is available in DHHS and a couple of additional data sources from outside of DHHS.

So, that is my quick intro. I don’t know if you have any questions about kind of the history of the reports. I will move on to the 2005 reports, which we are currently working on if I don’t have any questions about the history and background.

For the 2005 reports, we have made a number of changes. I am putting up here mostly out of interest — if you have any comments on it, of course, we are happy to receive them. We are continually trying to improve these reports. One of the major issues that we have encountered as we do these reports is that every year people nominate tons and tons of new measures and make new data sources for us. So, every year our data set gets bigger and our measure set gets bigger and it gets more unwieldy for us on the one hand and on the other hand from users we hear it is not useful to have 250, 300 measures to track all this stuff.

So, one of the things we are doing in the 2005 reports is we are picking a narrower measure set, which we are calling the core report measures and the many people here in the audience, who participated in this process because we convened our Interagency Workgroup’s help with this, can testify that this was a daunting task.

We took our 250 measures and our measure set and we just went through rounds and rounds of discussion to narrow it down and we came up with 46 quality measures and 13 access measures that are core report measures and from now on will be the measures that we report on every year in the reports. We will continue to include information about all 250 measures in our appendices and track them over time. But the report itself will focus on these core report measures, which we believe are the ones that are most scientifically sound and have the strongest evidence backing their use. It has made the production of the reports itself easier and we think it will help policymakers understand the information more easily.

But that is one of the decisions and one of the changes you will see in the year 2005 reports. Another is that I don’t know how familiar you are with the reports, but you saw that it was organized by the major categories of effectiveness broken down by condition. So, there is a cancer section, a heart disease section, et cetera. One of the comments we had where people aren’t interested — well, some people are interested in looking at it that way. Other people are interested in categories of care from the patient’s perception. So, preventive services, acute services, chronic disease management.

So, one of the things that we have done — we haven’t reorganized the report in that direction because we received input that the people who are condition oriented would be disappointed from the changing organization. One of the things we have, though, inserted is a crosswalk so that people can look at the front of the report and see, well, if I am interested in preventive services, I can look on these pages and find measures of relevance to me that cut across cancer and heart disease and other kinds of topical areas. That is another change we have made to the 2005 reports. We think it is an improvement.

We added new data into the report, of course. Like I said, every year we add new stuff. This year we are adding CMS’s Hospital Compare, to provide more timely state estimates of the QIO measures. We are adding the — I have to remember what this is — it is the cancer registries. We are moving beyond SEER, which has the 13 SEER cancer registries to the National Cancer Registry collection that has pretty much the cancer registries of all the states, who are providing state estimates.

We are adding a new substance abuse data set, the TEDS, from SAMHSA. We also have developed a number of new measures for the 2005 reports. We have added stuff related to HIV and mental health and substance abuse.

Another way to try to make the reports more understandable to policy maker kinds of users that we received input on was composite measures. The composite measures that we used in previous reports were well-received and we have really received a lot of input that we should continue along that development, to develop composite measures or report on composite measures and then allow the drill down capability to exist behind that.

To do this, this year we convened the technical expert panel and we included federal experts, as well as non-federal experts, statisticians, as well as policy makers, who would use these composite measures. We stuck them in one room and told them they couldn’t leave until they told us how to make composite measures from our huge measure set. And they did. Well, I mean, not letting them out probably helped, too.

They gave us a number of new composite measures that we are adding into this report and we are planning each year to be able to have more and more of the information in the composite form and, again, the goal is to make this information more easily understandable to policy makers. The last thing that the technical expert panel also provided us guidance on was how to summarize across the measure set. How can we summarize what is happening with quality of care across these 250 measures that we track or the 46 core report measures that we track and you will see that in this year’s report, an effort to try to summarize over the entire measure set.

That being said, I will go on and tell you some of the preliminary findings that we have in the 2005 reports. These aren’t set in stone. This is what we are working off of at this time. In the quality report, I think — I don’t think any of this will be terribly shocking. In the quality report, we find that quality continues to improve and, in fact, when we tried to compare those measures that were getting better versus those that were getting worse, for every one measure that was getting worse, ten quality measures are getting better.

So, overwhelmingly, the direction of improvement

— the direction is in the direction of improvement. However, if you try to quantify the rate of improvement, what we find is the overall annual rate of improvement is 2.8 percent. So, probably, you know, depending on your perspective, it could be better. It could be worse. It is a number. We think of our task as trying to make that number higher. Things are going in the right direction, but the reports and perhaps us in society need to accelerate that rate of change if we can.

Another thing that we found was there are differences in the rate of improvement. One of the things that we found was where we are paying attention, those areas seem to improve faster. So, I think we have heard a lot of stuff out there related to patient safety and, lo and behold, you know, we have an overall 2.8 percent improvement, annual rate of improvement, in quality overall. Patient safety measures are improving at about 10 percent annual rate.

We know that CMS has invested a lot of effort in pushing their hospital QIO measures, the acute myocardial infarction, congestive heart failure and pneumonia panel, and again, what we observe is the annual rate of change of about 9 percent compared with 2.8 percent for all measures of effectiveness. So, one of the things we are kind of learning is that where society pays attention and, in particular, where CMS and the Federal Government pays attention, stuff actually seems to be getting better faster than in other areas.

DR. COHN: Ernie, can I — this is just a question. I presume that this is based on everything having the same weight. Is that how this works? I mean, this isn’t a population metric because CSF is so much more common than other diseases.

DR. MOY: No, that is correct. This simply takes all of our patient safety measures and what you see here is the median, annual median change. We calculated the annual change and this is the median for all of our patient safety measures and comparably for each of the other categories of measures.

DR. COHN: Okay. Thank you.

DR. MOY: Some other QR preliminary findings, one, if you actually try to translate some of this stuff into attaining goals, such as the Healthy People 2010 goals. Many of our measures do relate to the Healthy People 2010. You can find that some are pretty far away. So, one of the goals which is presented here is just waiting for renal transplant. We are 70 years at current rates of change from meeting the 2010 goals and, obviously, that will take us a tad past 2010.

Similarly, the reports in general are trying to identify not only where we are doing well, but areas that we are doing poorly in. So, we have a section that tries to look at things that are suboptimal and where we are not seeing any change, where we are not seeing even that 2.8 percent improvement. This is just one of those that we noticed, relatively small change, hospitalized patients with MI getting smoking cessation counseling, suboptimal and really not changing over the last couple of years.

I will show you some of the preliminary disparities report findings now. The first finding, again, I don’t think rocket science here. Disparities are still pervasive. We have shown this for the last two years that you don’t really have to look real hard to find disparities, that if you just take a random set of measures, and we don’t have a random set of measures, good measures, but if you took a random set of measures and looked at them, for an awful lot of them, you would find differences. It is just some of the findings we find, that there are still sizeable proportions of quality measures and of access measures, where different minority groups and different lower socioeconomic groups do much more poorly than whites and higher income individuals.

One of the new findings we are presenting is we are starting — again, we have much better now. We have three plus years of data from almost all of our measures. So, we feel much more comfortable with this tracking function. So, we are starting to track disparities over time, what is happening? Are they getting better or are they getting worse?

One of the interesting observations we have noticed is for racial disparities in quality of care, there are more measures that are going in a direction of smaller disparities, so headed towards reductions that — to areas where we are headed towards a goal of eliminating disparities than are headed in the opposite direction.

So, in general, we think things are getting better for disparities and quality of care and for access to care for the 13 measures that we track, all of them, actually were headed in the right direction. All of them showed declines in the magnitude of disparities between the racial groups. So, that is a new finding that we are presenting this year in the 2005 reports.

Of course, we continue also to show the other side of that. That is, there are many opportunities for improvement and we easily can find some measures that all the groups — that for every group there are — let me start again — for every group we can easily find measures, which they are not doing well, for which they are doing poorly and for all the groups, we are also able to define some measures where there is a disparity and the disparity instead of getting better, it is getting worse.

So, there are certain targeted areas, we think, that are really ripe for a disparities intervention because there are, you know, existing disparities and those disparities are actually getting worse as opposed to getting better.

Another area that we touch on, again, is this whole information gap issue. In the past we have shown that there are a lot of measures for which there is this problem of information to provide estimates of quality and/or access for different kinds of groups. One of the general findings we are finding is that over time, the information gap is getting smaller. Part of it is artifactual and that is simply that in the early reports we are using 2000, 2001 data and many of the data sources hadn’t completed the transition to the 1997 OMB standards. Now we are using 2002 and 2003 and everything is pretty much switched over. So, that in and of itself is filling a lot of the holes that we have had because of the completion of the adoption of the federal standards.

But in addition even the stuff that had already transitioned in the past, we were noticing that for a variety of different reasons, more and more the holes are getting filled. So, I know some of the data sources, like MEPS, have begun intentional sampling of some of the smaller groups and that is filling in some of the holes. Sometimes we just observe that for whatever reason some of the holes are getting filled. I don’t know if it is specifically related to sampling or it is simply related to narrower standard errors on some of the estimates. But our general finding is that more and more of those holes are getting filled, but then that also directs us to those holes that aren’t getting filled as areas of opportunity for intervention.

Another thing I will mention is that one of the things we have always wanted to look at is the influence of language and country of origin on the issue of disparities and quality. In the past we have had limited data to do so, but now with the MEPS information, they added the questions related to those two items. We actually have information to look at that issue explicitly. You will see that in the 2005 reports.

Okay. That is the 2005 reports and if people have questions, I am glad to entertain them. Otherwise, I will move on to what we are doing about future reports, what we are thinking about as we move ahead.

Okay. Moving ahead, we have the major initiative this year to try to improve the inputs into the reports and this includes — we do this every year, but this year we are trying to really try to ramp this up. We will probably do this every couple of years. That is what we think we will do, to have a major initiative to fill identified gaps.

We break this up into three parts. One is filling identified gaps. One is doing a kind of stepping back and making sure that we are covering all the important conditions that we ought to cover. The third is doing an assessment of are we tapping into new and innovative data sources. I will talk about each of those a little bit.

I had mentioned that this activity actually began this current year also. We work to fill in gaps for mental health and substance abuse because there was an identified gap and we worked directly with SAMHSA and NIMH to develop new measures and to fill that gap. And similarly, we identified HIV care as a major gap in the old reports and we worked with CDC to develop measures to fill that gap.

Some of the things we are working on right now is that we have always been concerned about our section that relates to individuals with special health care needs and specifically individuals with disability at the end of life. One of the problems that we have faced is that we use many, many different data sources and each of those different data sources has different questions that could be used to determine who is disabled and who is not disabled.

This creates problems. We didn’t want to have to have, you know, a thousand footnotes after every figure to say by disability for this data set we mean. It would be a lot easier if we had a unified, consolidated single definition of disability. So, with the help of NCHS here, Barbara Altman from NCHS and Fran Cheverly at AHRQ are leading a group that really cuts across the federal sector.

We have many representatives from DHHS, as well as the VA, Census, Department of Defense and they have promised me that by the end of the year, they are going to give me a single unified definition of “disability” that I can use and apply to every data set that I want them to. I have my fingers crossed, but this will, I think, any advice they can give us will advance our ability to talk about quality of care and disparities faced by the disabled population.

Another major gap that we have identified is that we really aren’t doing very much in the area of efficiency and increasingly with the interest of us, as well as our private partners to go into performance and into public reporting and the like, we need to develop better measures of efficiency. So, we currently are in the process of organizing one of our evidence-based practice centers to give us a review of efficiency measures and, hopefully, these will be able to able to roll in in either the 2006 or the 2007 report.

DR. CARR: What would be an example of the efficiency measure?

DR. MOY: Some of the things that we have already in the reports that might be considered efficiency measures are things like avoidable hospitalizations or the inappropriate use of antibiotics for the common cold or for ear infections. We have some currently, which we call quality measures and not efficiency measures, but I think some people will regard that as efficiency measures.

Other things that we have in the past considered as potential efficiency measures might be things like cost per case, you know, things that have that dollar in there someplace, but because we don’t feel comfortable, you know, with what is out there right now, we do want these experts to come and provide us with some recommendations about which efficiency measures are best.

MS. GREENBERG: I just had a question about the previous part, where you are looking at, you said, the standard definition for disability and I wondered if you are considering the International Classification of Functioning Disability and Health, the ICF, which embraces a biopsychosocial model of disability as opposed to a strictly medical model?

DR. MOY: Help. I am relying upon our disability experts to help us. One of the constraints that I have given them is I don’t want this to be for the future. I want this to be for the next report. So, that means measures that we are currently capturing in the NHIS and the MEPS and the Medicare Current Beneficiary Survey. So, I don’t know if what you are asking about is already captured or something, that there needs to be new measure development. If it is something that needs a new measure development, then that is not what we are going to be looking at.

If it is currently captured, I think our group will probably reflect upon that.

MS. GREENBERG: Some of this is captured like in the HIS, but certainly not — you are not looking for them to also recommend data gaps or data that may be designated to be collected in the future?

DR. MOY: I think that will logically flow from this and, in fact, we are kind of doing things backwards. We are taking advantage of a group, as I understand it, that was convened to provide guidance on how the American Community Survey, a future survey, ought to measure disability. Most members of that group are on this group. So, we are focusing on current data, what we can do with current data.

However, I will say, you know, there is debate now about what to incorporate and not to incorporate. Ought we to incorporate very specific questions about visual problems or hearing problems when only some of the surveys kind of support that and others don’t? You know, it will lead to different definitions. It is the whole definition issue, that some surveys can provide a much more robust definition than others. I think we will probably have to compromise at some point for something that many of the surveys can use, even at the suboptimal definition of “disability.”

MS. GREENBERG: Are you planning to take the results of the technical advisory panel to the AHRQ advisory committee?

DR. MOY: Yes, absolutely. Absolutely. Everything we do flows through our interagency work groups. So, you will be seeing this again.

I talked a little bit about the measurement gaps and, you know, related to that is the data gaps. This is an area where I think you all really probably do have some leverage and could potentially help. You know, for the last several years, we have mentioned the data gaps that we have encountered in writing the reports. The small populations, both the racial groups, as well as the other demographic groups that are just numerically small and many were data sources and as a consequence really can’t provide estimates or if you can get an estimate, it is not deemed to be reliable or if it is reliable, well, you can’t really — you really don’t have the power to show differences unless those differences are gigantic.

There are also other groups that we have observed are just simply difficult to identify in specific types of data sources. So, for instance, racial and ethnic information on facility level data is often suspect and questionable and we wonder about what it really means and it is often missing. Similarly, individual socioeconomic status is often missing on facility data. Again, I have already touched the issue of disability, which is not available I would say on most of our data sources. Pretty much only the individual surveys kind of capture that in some way.

The last data gap I will mention because we might have clout here as well is that a number of the data sources that we rely on are not as periodic as we would want them. So, the National Nursing Home Survey and the National Home and Hospice Care Survey have been — have gone off line and I know Nursing Home is coming back on line, but they create very large gaps for us when they go off line for years at a time.

Similarly, on the NHIS, many of the preventive services are not repeated on a regular basis and, again, that creates major gaps for us, for the two reports. I don’t know if I have shown this one to you before. This is just one of our slides that kind of summarizes the gap in the information, the magnitude of the gaps in information. What it does is it just counts up across all of our measures of quality in that lighter color and in access to care in that purplish color, proportion of the measures that we track, where there is enough data to provide a reliable estimate and you see for whites and blacks, we pretty much have complete coverage. We have pretty good data from all of our data sources, but you see attenuation of that for the Hispanics and the Asians and then you get to the American Indians and the multiple race individuals, who really can’t say very much at all about the quality issues and disparities issues that they face.

DR. COHN: Can you clarify the difference between — I am just looking at access, trying to figure out what access was versus — I apologize, between quality and access. I understand what quality of the data, but what is — I mean, you can’t get to it. Is that your point?

DR. MOY: Oh, no. I am sorry. I wasn’t clear on that. The two major portions of the reports of disparity, there is a whole quality section that tracks measures of quality care and there is a whole access section that tracks access to care.

I mentioned another initiative that we are currently working on is just the question, are we covering the right health conditions and for this exercise, we stepped back and tried to make lists based upon the impact of different kinds of health conditions, the cost impact of different conditions, disparities impact. We are looking at the IOM priority conditions list, as well as departmental priorities. In a very cursory review, we have identified a number of areas where there are major effects on the American society, but we are not really covering them fully in the reports.

These are areas we are considering trying to pursue the addition of measures, where they are available, to help us inform these areas. You can see a couple of them there. Stroke and trauma really jumped out of this as areas that we ought to cover but aren’t currently covered.

The last thing I was going to mention was just these new emerging data and this is so emerging, I don’t even have a slide for it. I think we are struggling with this as well. One of the new emerging datas that I think it will be easy for us to incorporate is the patient safety data repositories that are going to be built from the recently passed Patient and Safety Improvement Act. Those are supposedly to flow directly to us for incorporation in the reports.

But more generically, people have asked us, well, how are you planning to incorporate all this wonderful data that is going to come out of these electronic health records? I mean, this is really the data that you want. It is all the clinical stuff that you want. How are you going to incorporate that in? We don’t have a good answer.

What we are thinking about doing is starting with some regional EHR kinds of repositories and piloting out some of the information that we could have from those that could then flow into the report as examples of what we could do when we move to the full, you know, national HIT infrastructure and we have every bit of information that we want, but we seek guidance. I mean, if you have advice for us how we can try to tap into this, how we can support the incorporation of those data into national public reporting, then that would be appreciated.

That is the contact information. If you don’t have a question for me now, you can feel free to contact me later and ask it then.

DR. COHN: I expect there will be some questions for you. Thank you.


MR. LOCALIO: I have a question that I think may be representative of other issues. You mentioned that over one-third of patients hospitalized for heart attacks are not advised to quit smoking. That hasn’t changed. Now, that is based on a medical record review. Is that correct?

DR. MOY: That is correct.

MR. LOCALIO: So, it is not based on asking the patient whether he or she — I know the history of this and it was my understanding that it could very well be that nobody put in — it is the medical record with the stamp that said “advised to stop smoking.” And it could be no one is not advised to quit smoking. They have been advised 12 or 15 times. But there is a problem of where you get your data and how good the reliability of that data source is.

The second question that is related to that, it is my understanding that under the new legislation on the patient safety data reporting, that is going to be voluntary reporting. So, that is also dependent on the reliability of the voluntary reporting.

DR. MOY: Both comments are accurate. I mean, the first one, you know, we have to rely upon what is gathered. We are not gathering any of this data ourselves. So, we have to rely upon what is gathered and try to put an appropriate interpretation on it. That is one of the caveats that we recognize.

Regarding the repositories, there, you know, again, we are very open to receiving input. We aren’t expecting to get data for a couple of years. So, there is time to prepare how to respond to that. One of our assumptions is that none of that will have denominator data. So, all of it will be voluntary events. How can we make that into something that is then meaningful for — maybe the answer it is just not useful. But we are hoping that there is some use for that numerator data.

DR. STEINWACHS: The Populations Subcommittee is trying to figure out its agenda for the near future. So, one of the things we have been considering is trying to see if there are things that we could do that would be helpful in support of the two reports and had some discussion yesterday with NCHS and AHRQ staff there.

Part of what comes up is trying to — among committee members, I think, trying to think about where are the bigger payoffs and whether you consider that low hanging fruit or you see this also as where there is the greatest policy potential significance. I thought I would get you to talk a little bit Ernie about how you see this information as it feeds back into the policy process. I know you mentioned at the state level people are trying to use it to probably push change, but are there things that sort of threaten the utility?

I remember you mentioned SES, for instance, is not maybe as good as you would like it. That continues probably to change and evolve in this country. Certainly populations change in other ways and that probably could effect the way in which you would interpret trends as whether that is a population change where, indeed, it is truly the same person presenting at the same place would look exactly the same.

Just some comments to sort of guide us in thinking about what we might do? You have given us some good concrete suggestions, too, but I guess part of it is, you know, what might have the biggest bang both — and then also are there long term issues that need to be addressed. I think you have picked some of those already.

DR. MOY: I guess there is the wish list, which is we just want better data. We want complete data and enough data to provide access for everybody. But I think your question is important. So, where ought we to focus? Where ought we to start. I think what we need perhaps to do as one of our exercises is kind of go through our observations about what we can tell about disparities and where are these major holes and where we think there are probably disparities, but we just can’t provide that estimate. We might have either a very unreliable estimate for a particular population . We might have no estimate for a population, but, you know, because of the disparities we observed in other populations, it is likely to be a problem there and that might be an area of opportunity so that we then could say, well, you know, if we had better information about Native Hawaiians, you would see that this is probably a major problem area for them and that might add more fuel to do something about that particular problem.

So, I think it is a good question. I think you are raising an exercise that we ought to go through and maybe it will provide more specifics. We have generally gone out there and said we will just get us better info, but we will try to be more vocal about that.

DR. STEINWACHS: Well, we look forward to having more conversations with you about, you know, ways in which we might be able to focus our actions.

DR. COHN: Kevin.

DR. VIGILANTE: Thank you, Ernie, for a great report. I just want to touch on a theme that we spoke yesterday about, the populations report, and we have actually talked a little bit here before. And it is the — you know, when you talk about the two factors, access and quality, and relate them to the chasm in your diagram between disparities, I am not saying you are saying this, but one could infer that the underlying hypothesis is that if we equalized quality and access, that health disparities would go away. Of course, that is not necessarily the case and that there are alternative hypotheses as to what else contributes to disparities and whether it is the level of education achieved or whether it is asset development over time and that it might be — as we think about integrating the operative forces relevant to health disparities that would then have impact on policies subsequently.

It might be beyond the scope of your mission, but on the other hand, I think it is important to start to integrate the other hypothesized causative factors because I think they will help decision-makers prioritize what kind of interventions are going to provide the most bang for the buck in addressing disparities. So, whether it is, you know, looking at experiments in individual development accounts that help people develop assets over time and to see what other secondary effects it has on health status, educational attainment and those sorts of things. I think those might be fruitful areas to be thinking about and areas that we sort of thought about in the Populations group is sort of making recommendations for looking at ways to integrate this data and perhaps further discussions with you as to where you think we could be helpful or where that might be productive might be an area to explore.

DR. MOY: We are very open to new ideas. I mean, as you must know, we try to focus on what we believe to be the core function of the report simply to track where we are going and, hopefully, that is some fuel to people who then push further. We are limited to what we can push on and how much we can push on, but we try to support other people to the extent that we are able to push in different ways.

I think what you raise is a very important issue. We don’t try to say anything about causation, as you probably would observe if you look through the reports. And we fully recognize that many of these — most health disparities are not related to health care. I mean, I think we probably would agree on that.

Yet, because we do have some hold on the providers and because providers, I think, in our observation inherently are interested in improving quality and reducing disparities, we think that we can have an impact at least on that part of the equation. We need others to help us to make an impact on the other parts.

DR. COHN: Justine.

DR. CARR: I am sorry you didn’t have a slide on that mining electronic health record. That is what the quality group has been speaking about. And I was also interested in your attention to efficiency because I think one of the concerns we have is the cost for collecting tobacco cessation documentation or any of these core measures is tremendously resource intensive, labor intensive and high cost sophisticated chart abstractors and yet we are moving forward with our electronic health record, which should be an ideal thing.

So, this is an area that we would want to understand more about and sort of raise in importance because as the measures grow, the cost grows and the sustainability comes into question. Can you say anything more about that in terms of the electronic health worker or thoughts or next steps or who else is working on it?

DR. MOY: I think we are in an early phase for most of us. I know one of the things we are getting a lot of push, not just the report team, but AHRQ in general, is to try to help ONSHT(?) develop those data items related to quality that is important to capture, develop some kind of standards for that so that the capture is automated and low cost presumably, as opposed to intentional and high cost. So, I can’t we have started doing that yet, but I know that that is on our list of activities, you know, developing some kind of standards to drive ONSHT about the quality measures that ought to be captured automatically off of the EMR and that could then presumable flow at one point directly into our reports.

DR. COHN: Bob.

MR. HUNGATE: This is a follow-on question in the same. The question is kind of two part. You refer to policy makers as the target for the report. If I slip and say I want actionable information at an organizational level that can deal with the disparity in its population vis-a-vis the general report, there are two questions that come to me. The first is how does an organization that is interested in self-comparing, how easy is it for them to generate the same data on themselves.

The second relates to what the confidence level is in terms of the validity of the indicators as measures of the function of a condition of measurement, for instance.

DR. MOY: I think that is two very important issues. In terms of what we say to providers who have an interest in applying this measure set to their own data is first of all that we can’t do it for them. I mean, the same data sources that we are using at the national level and the state level, we cannot provide in general the levels at the organizational or very small area levels, which is what they need. I mean, change is local. They have different initiatives. So, we say that is your responsibility and that is some of it.

But they are the ones that have to step up to the plate and be willing to do this. We justify that by saying we think they can do it more efficiently. We think that a central processor of data cannot know their area and their health needs and their communities and their populations well enough to do it without doing everything. That is very inefficient. So, we do think it is better for them to be the ones that drive this process rather than us. We try to make it easy for them by having the methods available for them, as well as the benchmarks so that they can know, you know, if they can do this data, how they are doing.

But let’s say that you are starting to know, though, it would still be pretty hard to do this. On the flip side, most of this stuff that we are doing is Healthy People 2010. It is HEATIS(?). It is stuff that a lot of the major groups are already doing and then for them, I don’t think it is that much of a challenge for many of these measures to do because they are already doing it for somebody.

The second issue related to — oh, can you remind me?

MR. HUNGATE: Oh, the reliability of the use of the indicators as a function of their representation of the larger group, which they represent.

DR. MOY: Right. I know there is variability in terms of the measures in terms of the quality and I think any kind of community has to, you know, weigh it to see how applicable it is to their specific community. We try in the core report measures to flag those that we think are most valuable and most reliable. That is part of the function of the core report measures.

Through the compositing, we kind of think we filter out some of the garbage that kind of flows in. If you take a panel of measures and put them together, for instance, the smoking cessation measure kind of gets lost when you put in all the MI measures together. So, those are some of the strategies that we encourage communities to use to try to get things that are more helpful for them, but I think ultimately each community has to weigh it for themselves and see what is useful there and what is not useful there.

We hope that they will report to us so that we can then share that.

MR. HUNGATE: Thank you.

DR. COHN: Comments?

Well, Dr. Moy, I want to thank you. I think it was a very interesting presentation. I am hoping that we will be able to work collaboratively with you on a number of the issues you bring up. I know, obviously, you look to AHRQ and their national advisory committee for certain input and hopefully we will be able to supplement that with additional perspectives.

DR. MOY: I look forward to that input.

DR. COHN: Yes. Thank you so much..

Why don’t we take about a half hour — I guess I will ask the committee, but I guess we have lunch coming.

MS. GREENBERG: The sandwiches have arrived for those who signed up for them. If you haven’t paid me your $8, please do so. What do we have? Ten? Okay. I think nine people signed up. So, if nobody else wants the tenth, I am willing to take it, but if there is somebody who wanted one —

PARTICIPANT: I will sign up.

MS. GREENBERG: You already signed up.

DR. COHN: Let me ask everybody. We have a couple of options. We can just take an hour’s break and have lunch and start at 1:00. Do you want to take a half an hour and we will get back going at 12:30? 12:30. Okay.

[Whereupon, at 12:05 p.m., the meeting was recessed, to reconvene at 12:40 p.m., the same afternoon, Friday, September 9, 2005.]


A F T E R N O O N S E S S I O N [12:40 p.m.]

DR. COHN: The good news, of course, is that we finished up all of our action items. What we are going to spend the last while doing is hearing reports from subcommittees and workgroups. I am obviously hoping that the chairs of the respective groups will be able to talk some about upcoming deliverables that we should be expecting, sort of a general idea of plans for this upcoming fiscal year.

Then at the end, I want to spend a little while talking about functioning of the committee and various other sort of logistic and other things, just sort of reflecting on sort of what happened yesterday and today, just to see about views about improving function. After that, we will adjourn.

DR. STEINWACHS: But we all know we have no consistent measures of functioning.

DR. COHN: That is right. We know about the metrics issue and we are not going to put together a committee to go and figure that one out. We probably need an essential data set on that.

MS. GREENBERG: And can I just tell people that I am now putting on the table a little dessert.

DR. COHN: I actually want to just take a moment and acknowledge both Marjorie, as well as her staff. They have been — obviously, they have been feeding us on top of everything else, in addition to lunch. And as I understand it, it actually isn’t departmental budget. It is actually their funds. So, we do really want to thank them.


So, thank you very much.

MS. GREENBERG: Yes. I mean, it just goes against my nature to let you guys starve.

DR. STEINWACHS: We think it is part of your genetic code and we are thankful.

MS. GREENBERG: But everybody pitched in.

DR. COHN: We do appreciate it.

Now, what I am going to do is suggest that we start with Privacy and Confidentiality Subcommittee. We had some time earlier that was really meant to be just a discussion of what the deliverables coming forward may be or are likely to be, the current status of them.

I am going to ask Mark to obviously discuss that as well as other activities planned by the subcommittee.

Agenda Item: Subcommittee on Privacy & Confidentiality

MR. ROTHSTEIN: Thank you, Simon.

As you probably know, our No. 1 priority is to develop a letter and report to the Secretary on privacy and confidentiality in the NHIN and we have held four rounds of hearings this year and we are now beginning the discussion and drafting process.

We had our first meeting yesterday and we met again this morning to talk about where we should be going with the draft. There is a working draft or I should say a discussion draft that we are using to help frame the issues for us. I can report that this morning we did a spectacular job of identifying areas of disagreement.

Now, our challenge is to identify areas of agreement. Our schedule calls for one or more conference calls over the next several weeks and then we have a meeting planned, an all-day meeting that will probably be here, October 21st. It was originally scheduled for the Humphrey Building. It is not clear whether we are going to have a product ready for discussion by the full committee at the November meeting.

It has been our intent and our aim to do that, but I think once you see the kinds of issues that we are dealing with, they are so important, so complex and, frankly, so contentious that developing a comfort level in the document is going to be difficult for us. I think we are up to it. We are going to give it our best shot, but it is very difficult.

I think Simon wanted me to just review some of the issues that we need to deal with and when I go through them, you will get a sense of the magnitude of our task. We have to decide whether individuals have an option to be in or out of the network, not to have their records in electronic form, but to be part of the NHIN.

If we say they have that choice, then how is that exercised? Is it an opt in or an opt out? We also have to decide whether individuals either at the local level or the more national level have a right to edit their records; in other words, block certain information or even to remove certain information that they think is highly sensitive and what are the effects on health care and so on of doing that.

DR. VIGILANTE: Of their EHR or —

MR. ROTHSTEIN: Correct, of their EHR, yes.

So, those are some very important information — questions that we have. We also are dealing with the issue of what is sometimes called in contained or closed systems, role-based access criteria so that the dieticians and the billing clerks don’t get the same information as the clinicians —

MS. GREENBERG: Dieticians and clinicians.

MR. ROTHSTEIN: Oh, I am sorry. The food service staff. Is that better? Okay.

So, should the use principles be made more universally applicable throughout the NIHN? What about contextual access criteria so that when there are disclosures pursuant to an authorization for non-medical purposes, let’s say, to a school or for employment or for life insurance or something, is there some way that we have of limiting the amount of information disclosed and not disclosing irrelevant, sensitive information along with the information that is relevant. So, that is a difficult issue that we have to deal with.

We have got the regulatory issues of whether the jurisdiction should be broader, as we talked yesterday, than HIPAA and should extend to anyone who uses, compiles, discloses personal health information. We have to deal with the issue of federal/state relationship and preemption or non-preemption. We have to deal with the issue of federal/state relationship and preemption or non-preemption. We have to deal with fair information practices, audit trails and the right to correct records.

We have to deal with enforcement, how are we going to — what actions are we going to take when individuals or entities, wrongfully disclosed information or negligently allow information to be disclosed. And should individuals have some sort of right to compensation if they are harmed as a result of the disclosure?

Then there is the whole issue of secondary uses, controlling the discriminatory application of this. Then, finally, at least finally in a moment, we may be adding many more things, how do you establish and maintain public trust in such a broad system? That is only finally for discussion purposes, maybe a first order of business.

Those are just a few of the issues that we are dealing with. We are dealing with many others as well and we are getting into not the specifics of security, but in the public’s mind privacy means security; in other words, preventing their information from being accessible to people who are not authorized to see it. So, we need to get those principles in place. It is a very difficult and challenging process and you will get to see the results of our labor at sometime in the future, but we just — I am not sure I can promise it will be November.

DR. STEINWACHS: Mark, you made me think about — I just got back from vacation about — we usually talk about only within the U.S. borders, these things, and when people move outside the U.S. borders get access or have any guarantees about what they would access, is that something in the way far future of this agenda?

MR. ROTHSTEIN: So, you are saying that if you are on vacation in Europe and you are ill, can you access the system?

DR. STEINWACHS: That is right. Then would there be any safeguards in that access? Once it went outside the country, it would be outside the —

MS. BERNSTEIN: Better safeguards for you in Europe than there are for you here.


MS. BERNSTEIN: Likely to be better safeguards for you in Europe than they are here. For example, you know, the Federal Privacy Act doesn’t cover non-citizens, but you are covered if you go to European countries that are part of the EU as a non-citizen in their system.

DR. STEINWACHS: So, we ought to give travel warnings. EU is okay but don’t head to Southeast Asia.

MS. BERNSTEIN: Hong Kong, Japan, Australia, Canada all have, you know, comprehensive privacy systems unlike the ones we have in this country.

MR. ROTHSTEIN: The other overseas issue that we are concerned about is business associates who are not just overseas, but here as well, and what restrictions should apply to them and do we need to go beyond HIPAA in regulating business —

DR. COHN: So, Don, you wanted to add your additional questions on to our list?

DR. STEINWACHS: Well, you know, I have been guided many years in my research agenda by self-interest. So, as I get older, I get more concerned with end of life, long term care. You know, when I was younger, I had less of those concerns. So, I am very happy to add my own personal research agenda in the hope that it will be fixed by the time I need it.

DR. VIGILANTE: I think the answer for you, Don, is just to take less vacations abroad or probably less vacations.

DR. STEINWACHS: That is because we have inadequate measures of functional status.

MS. GREENBERG: What are you going to do when you are done with that?

DR. STEINWACHS: Mark, how long is your appointment on the committee?

MR. ROTHSTEIN: Actually two more years. There may actually be something after this. We do have scheduled to take a look at some of the more problematic areas of HIPAA. In particular, the notice and acknowledgement requirement and trying to see whether there is some way to make that not just sort of a rote exercise and to evaluate how that is working.

We are also concerned with the right to request amendments provision, which I don’t think has worked out the way it was intended, minimum disclosure, accounting for disclosures. I mean there are a whole set of areas under HIPAA and everybody probably has their own pet list of things that maybe could be improved a little or a lot and we want to take a look at those.

DR. STEINWACHS: Mark, could you just say two more words about the right to amendment? I was just curious because I hadn’t —

MR. ROTHSTEIN: Well, the privacy rule says that individuals have a right to request amendment, but that the covered entities don’t have to accede to the request. Our information is from several hearings that there are many covered entities that routinely have the policy of never allowing amendments because they don’t want to open that door. It is too time consuming. It is too problematic and whatever.

So, what happens to your amendment right if it — it is the request something that nobody is going to give you. That is not much of a right and so we want to look at that.

DR. COHN: Well, Mark, sounds good. I think the only thing that I might add to all of this is is that probably some of the issues that you described initially relating to the NHIN maybe issues as they get reflected on further may need even some public discussion or further hearings for the clarification. I don’t know that the letter has to wait for that, but there are some things admittedly as we open the box further, that there may be needs for further conversation.

MR. ROTHSTEIN: Well, I think that is a good point, Simon. There may be some areas where the members of the subcommittee met ultimately and the full committee are very confident in their recommendations and say we need to do this, this and this. There may be other areas where we say we have identified this issue and this is very important. We are continuing to monitor it and we will hold additional hearings and report back to you later.

I think we need to keep those sorts of options open.

DR. COHN: Great. Well, Mark, thank you. I really appreciate your leadership on this. I am just trying to think of some way to say —

MS. GREENBERG: Better you than me.

DR. COHN: No. Well, I was also just thinking along the lines of now you understand what happens with privacy and with standards and security when they have an issue and how much time it takes to go from hearings to an actual letter where people have consensus on that. That is actually what I was thinking, that it takes a lot of time to talk through the issues.


PARTICIPANT: You ain’t seen nothing yet.

DR. COHN: Yes, that is right. Exactly.

Shall we have the Standards and Security report next?

Agenda Item: Subcommittee on Standards and Security

DR. HUFF: Sure. I am standing in for Harry Reynolds and Jeff Blair.

We continue to focus on a balanced portfolio and actually there is this very nice sort or diagram that Harry made up, the staff helped him with, but it sort of — it just shows sort of how, you know, topics interact with having a balanced portfolio and process, et cetera. What we mean by “balanced” particularly is that we want to have a mix of current issues, things that need action or will result in some kind of recommendation or something in two years, something that — other things that are future and may not come to fruition for some time.

Keeping that in mind then, in the September 21st hearing, we are hearing about e-prescribing pilot update, an update on the ki(?) standard status, what has happened with that since we ONKIT(?) now and that group involved and what is happening currently with ki standards activities, talking about claims attachments and return on investment relative to claims attachments.

Then secondary uses of clinical data in the sense of uses of data, other than for the primary care of the patient and then matching patients to their records. So, it is the whole question of how we know that this data pertains to the same patient, as we see that person day after day or time after time.

Then in December, there would be a report from the DEA on what has happened with e-prescribing and many of you who have been involved know that there were issues relative to whether we needed, you know, public key encryption, strong authentication relative to — so, we wanted an update to see how that had evolved and anything new was there. An update on ICD-10, it might be brief, but just wondered — one of those things that we sent a recommendation in and it, you know —

MS. GREENBERG: Two years. It will have been two years in November.

DR. HUFF: So, we just wondered where that — if there is anything to be done or where that is at.

Then HIPAA return on investment and then continuing actions talking about secondary uses of data and matching — secondary uses of data and matching patients to their records will be — actually have some time both in December and in the February meetings, talking about having the National Library of Medicine come and talk about the mappings that they have been working on between ICD-9, SnoMed, LOINK Codes and CPT codes, a bunch of kind of things like that and then issues about the National Provider Identifier implementation issues related to that.

So, we have plenty to do. It is boring in comparison, I think, to Mark’s agenda, but well —

MS. GREENBERG: I was just saying to Mark there are a lot of interesting things you are working on.

DR. HUFF: So, we have plenty to do, but at the same time if there were particular areas that the Secretary or the office, the national office, Dr. Brailer’s(?) office wanted us to pursue, I think we could also fit those into the agenda. So, we want to make sure people know that we are willing to take some direction of issues that are of particular national interest.

That is my brief report.

DR. COHN: Questions or comments? Carol, do you have a comment? You sort of looked like you were —

MS. MC CALL: I suppose that a comment isn’t general and it is how many — the interrelationships between the different agendas and I see more intersection all the time. I am sure that is as much a function of me and my own knowledge as I come up to speed as it is anything else, but I also think there is a sea change here. In particular, around some of the work that you were just talking about and, in particular, some of the standards, they have very real meaning in terms of a clinical context in an EHR, but I think there is also a standard — there is a relationship to what we would like to do to measure quality, how we would like to look at performance metrics, the translation of those metrics into a meaningful benefit on pay for performance, which I am sure we could — if we could write a meaningful recommendation or share findings. People are ready to listen.

So, I just see some very vital intersection points with what you are doing. So, we just need to find a way to integrate some of that.

DR. HUFF: Yes.

DR. COHN: Stan, I was also going to comment and I guess I am wondering whether the co-chairs of your committee mentioned this to you or not, but we were talking in November at the full committee meeting about having a session on secondary uses of data, trying to bring everyone up to speed.

DR. HUFF: Nobody had mentioned that, but that would be great.

PARTICIPANT: Good luck with that.

DR. COHN: It was actually advised last night that I delegate this to the co-chairs to break it to you, but they both left the building. Maybe that is why they left early.

DR. HUFF: I would be happy to do that.

MS. GREENBERG: I had a baseball game last night. I would actually think it should be — the planning of that session should be delegated to the co-chairs of Standards and Security and the Quality Workgroup because it is so much on their agenda as well, unless you just want it to be the Executive Subcommittee.

DR. COHN: Well, no, I think that is — I guess I was looking at the Standards and Security since they had taken the lead on holding hearings on it already to begin to devise something. I think you bring up a very good point that we need to get the input from the Quality Workgroup before finalizing it. I just was sort of thinking that given that they had taken the leadership already in doing it, but, Bob, you may have a different view or —

MR. HUNGATE: In that context, I think that the hearing that you are holding on the 22nd of September gets into that information. Am I right?

DR. HUFF: Yes.

MR. HUNGATE: We have been given the opportunity to tune into that and, hence, participate. I think that would be useful in terms of the next step. So, that is a — is my mike live?

There is a process here of mutual work between the Quality Workgroup and Standards and Security, where I think our listening to the content of that hearing will speed our own understanding of what we would like to contribute —

DR. COHN: Well, Bob, realize this is not the first hearing we have had on the topic. I think what we felt was — and I am speaking, I think, when I was with the Standards and Security Subcommittee, as well as the Executive Committee discussions was that this was an issue of just general interest, not just to quality but also to populations potentially and potentially to privacy.

So, we are trying to elevate the issue, give everybody a reasonable grounding —

MR. HUNGATE: I understand and I am trying to respond to whether we should be involved in the planning of that session. My sense is that I am comfortable with Standards doing it and having two people do it will be easier than four, but I think we should have the freedom to input and suggest as we see fit. Listening to that hearing will help inform our input. So, that is the content that I was trying to introduce to the discussion.

DR. COHN: Sure. No, that sounds fine.

MS. GREENBERG: That makes sense. I think we will need to have a conference call probably of the Executive Subcommittee around the November agenda.

DR. COHN: Well, let’s talk about that after we are done with the subcommittee reports.

MS. GREENBERG: Okay. Then that would be an opportunity for everyone to have input into this top, as well as any others.

DR. COHN: I just want to take this opportunity not to surprise Stan too much with this. Sorry.

Anything else on Standards and Security?

MS. GREENBERG: Is someone missing their cell phone? It seems to have gotten into my bag.


DR. COHN: Okay. Quality Workgroup.

Agenda Item: Workgroup on Quality

MR. HUNGATE: Okay. We are following the lead of the Secretary’s health IT agenda by talking about a vision for health IT. We started with a retreat, which you have all heard a bit about. The content in that focused on three content elements headings for what we are working on, which are vision, knowledge management, quality IT intersection. You have to tie to that the pay for performance initiatives that are going forward. But that becomes the core content for what we see as the, if you will, next evolution of the merger of these two documents, the one that Marjorie so nicely addressed to introduce by having the same color clothes, you recall, in the days we talked about these two reports.

So, we are visioning a small piece of documentation that would begin to bridge these and take the next step in information management as it relates to performance measurement, quality improvement. The way this will evolve is probably in a two step, really multi step, gradually clearer picture, where we would hope to have an initial kind of profile of that within a year’s time frame and then follow that with a more complete version later.

The retreat served to get us started in thinking about what we should contribute. It energized the group. I am a little worried about Mark’s comment about all the disagreement that occurred after the hearings because we have had significant discussions without any hearings. If that is the way things go I am not — our energization is very strong and I think that this is going to save us a little disagreement later on as we try to thrash out what we are really trying to work toward and one of the things we are setting early on the agenda is to get to an agreement on a set of principles that bound the content that we are trying to work on so that we stay on track and, for instance, we are going to assume that the privacy and security issues are settled in another area and that we will not attempt to deal with that, although stay obviously concerned with that content.

We have scheduled a conference call to work on that particular piece, the principles on the 17th and that will also work toward firming up the agenda for our scheduled November 18th hearing. We have tried to pick our hearing dates just after or just before our full committee meeting times so that we minimize the travel. It seems to work better for us. I am not sure whether that will be a long term pattern or not.

We are fortunate to have Susan Kanaan helping us, keeping the documentation as we go along in a manageable form. The addition of a co-chair in Carol is very helpful and Justine’s going on the National Advisory Council for AHRQ will be also very important.

It leads me to a discussion of an issue that we confront that I think is critical to our success. If I can use an allegory, we have got like an eight oar boat and we can keep about four oars staffed and we have rotation in terms of the way we go about doing our work, I think, which is fine. But we need to be able to staff eight oars and we are not well tuned into the other sections of government that relate to the content that we are working on. Our ties with CMS are not strong enough. Our ties into AHRQ are not strong enough.

So, I think we have an issue there that we have to work on and I would appreciate help from others and suggestions as to how to go about that. It has been my observation that successful work products from this group are a composite of the members and the staff from the various parts of HHS that are related to it. We haven’t got that part tied in very well to our work.

So, I would appreciate suggestions on how it evolved historically. Does either of you have addition to make to the content?

MS. MC CALL: I think a couple of additional points regarding additional people, I think one of the things we have talked about in addition to some of the connections is to explicitly kind of choreograph or architect those connections. I think not only across some of the committees and workgroups within the full committee, but also out to various of the important liaisons and so — actually Bob has mentioned a couple, both with Justine, but also the need for a few, whether it is into CMS or just strengthening relationships.

I just want to echo how important I think setting that up well and tapping into those key places that are working on key things and/or places where there is synergy, how vital that is. We are going to be playing a zone for awhile. You know, it is not going to be man to man. We are going to have to cover a lot, but I think if we are able to architect something here that has a lot of synergy across areas within NCVHS and then across to the few key places, that it is not going to take a tremendous amount of resource. So, I don’t want anybody to think that it is a small army, but it is needed. We are agreed.

DR. CARR: I was just going to add in terms of I think part of the support issue will be better defined as we define the agenda and I think what we heard today from Ernie Moy about particularly that issue and when speaking to Paul Tang also about the fact that quality and the electronic health record are not intersecting at the moment in terms of getting data out and sustaining these various pay for performance initiatives. It is something that we have been passionately, energetically, enthusiastically discussing in our group about how to approach hearing that this is something that AHRQ wants to do, as well as the synergies within the committee. I think that is quite energizing and we are going to be following up and sort of work closely with AHRQ. So, looking forward to that.

MS. MC CALL: One other bit of color on what we talked about this morning, we talked about the fact that given that there is, it seems, this missing link and I guess it was talked about this morning while I had to step out, but it was also talked about in our retreat by John Holumka(?), that there is this missing piece. You know, we build all this infrastructure and yet we tend to forget why we are doing it.

As a group what we have talked about is building, for lack of a better term, kind of a case for quality not at the high level. I think everybody understands that there is a case for quality, but we have talked over the last couple of days about finding synergy, about finding sweet spots, of where early work and early games make a lot of sense not only for our own work, but also because of the opportunities with AHIC(?), that find those things where those things where there are early wins.

So, I think it is not about making the case. It is about finding where the case and the light shining on that case is particularly bright and that means finding the synergies between EHRs and quality and NHII and of all the standards that you can create, which are the most important ones to create first because there is an overlap because it is fast, it is easy, it is meaningful. IOM has an opinion on it. It promotes quality and it has a high value.

So, we believe that there is work that we would like to do to try to make that case, not broadly, but specifically so that it can turn into recommendations that are concise and pithy and actionable. So, to the extent that in your work, you find those opportunities where you find the light is bright, let us know because then we will specifically look from a quality and a value perspective to see if the light is also bright there. So, that is really a request.

MR. HUNGATE: Don, do you have any additional comment as the retiring co-chair?

DR. STEINWACHS: I like retiring.

MR. HUNGATE: We are done.

DR. COHN: Thank you.


Agenda Item: Subcommittee on Populations

DR. STEINWACHS: I tried to avoid retirement with the idea I had this phase down strategy. It is like work. I enjoy work, but I would like many times as the years go on to do less of it and be more choosy about what I do.

PARTICIPANT: You are doing a good job of that, Don.

DR. STEINWACHS: And I am doing it very well? Thank you. But someone pointed out to me that in Australia, phasing down means dying. It is end of life. So, it is interesting the terminology that I just took for granted was fine. I was trying to get away from — it took me immediately to where Kevin wants to send me.

The greatest accomplishment in this calendar year for the Population Committee certainly has been to get the committee’s approval and now the Executive Committee’s approval for the report. A mock-up of the report is now available. You know, when the actual comes out of the printing presses and it can’t go to the printer until the new budget comes in after October 1. When it comes out, Marjorie is going to be wearing her gowns that match this report.

PARTICIPANT: That would be fuchsia, would it not?

DR. STEINWACHS: I think so. It looks like a companion to the Health Statistics for the 21st Century Vision. So, it sort of builds in that direction and we are very proud of it. We are in the process of putting together the dissemination list and we are going to share this — Audrey and I get this out to the committee members to see who ought to be added. Simon, maybe it might be useful, at least among the Executive Committee also.

The list right now identifies the government agencies within HHS and within those other federal agencies, private organizations, but I think the success of this report in part is going to be dependent upon trying to get it out to the people who have an interest and can be the ones that can make it actionable since it cuts across not only what the government can do, but also directly what the private sector and other sectors can do. So, your help on that would be appreciated very much.

MS. GREENBERG: I think, Don, in that regard, I think also Bill Scanlon, who couldn’t be with us this week, but is now the liaison to the Board of Scientific Counselors, the NCHS Board of Scientific Counselors, which will be meeting in this room in a week and he will be telling them about the report as well because there is a lot of interchange there.

DR. STEINWACHS: We will have to make sure we add the Board of Scientific Counselors to our mailing list, right?

MS. GREENBERG: They will actually be getting these next week.

DR. STEINWACHS: That then brings us to the point of what our future agenda is and where we are going and we have had some discussions by conference call. We sort of arrived at using, I guess, a couple of parameters to guide it. The idea that we might focus on one of the possible areas was the need to improve the capacity for population quality measures that we just heard about and for disparity measures and so what this committee might do in support of the AHRQ mandate to provide those reports. Our meeting with the meeting here just yesterday, we had the benefit of staff both from AHRQ and NCHS, who have been involved in the reports talking to the committee members about some of the areas that they felt there might be a contribution.

Some of that discussion strengths of the committee, one certainly in the capture of race, ethnicity in a consistent way. As Ernie pointed out, that is improving as at least the federal surveys come up to standards. There are still some issues out there, for instance, in many cases Hispanics don’t recognize that they are also supposed to check off whether they are white, black, you know. So, this is not exactly a crystal clear image of the classification that works across the board for everyone.

Possibly, one of the other issues and we were encouraged by several staff to think about was the problems that are faced in capturing information on SES and so that if you look at both quality measures and disparity measures, as was pointed out by Ernie, the biggest differences are across socioeconomic classes. The next biggest difference is across racial groups. So to the extent that the racial composition and social class composition of America continues to evolve and change — some of the trends of changes you are seeing are really changing by virtue possibly of just the population composition.

So that the ability to try and measure those as accurately as possible helps you at least deal with the trend issue. Possibly more important, which came up in the committee discussions, was if you think about how does this information become useful to policy makers, in part you would think that would be in terms of targeting selected groups, as well as a couple of committee members, Kevin for one, raised when we think about interventions, you know, maybe the interventions that usually come to our mind, which are more in the medical care prevention arena, aren’t the right ones. Maybe they are interventions that one thinks about that alters the educational level, other factors that can in a sense over time more radically improve people’s health and the quality of care they get and well being and possibly medical care.

The discussion that ensued, I think, was very good in terms of pointing to the fact that there is a concern that where we invest our energies ought to be in something that has payoff in terms of the policy arena, in terms of people’s health. These reports are mandated by Congress. At the same time, I don’t think we know a lot about how the information is really getting utilized and are there areas that you might focus on that would have more impact in terms of it being able to improve measurement or be able to extend measurement to groups that, as Ernie pointed out, some of the groups in this country have very little information on the Asian, the Hawaiian Islanders, Pacific Islanders and Native Hawaiians. I will get this correct — and Hopis, as well as American Indian groups have very little data, which is another one of those issues.

The committee also had some discussion about whether we ought to go into other areas and not focus on this one of population quality. The one tension I think that exists is the committee is among members is a majority are also on the Quality Workgroup. So, one of the desirable things about trying to sort of maybe have complementarity, think about population measures against what become much more patient level organizational level measures of quality, as two different kinds of ways to measure quality and to the extent there are disparities between those two, again, help you focus on what are some of the problems facing America.

Some other members, who aren’t as evolved in the Quality Workgroup, I think also would see opportunities for us to move into areas other than that. So, I think this is a long way of saying a short statement that we working in progress. We are going to have some conference calls. We are going to either have a retreat or have in some invited speakers to help try and stimulate us to think about where do we go with this agenda. But at least my charge it would be to try and settle that before the end of the calendar year so that we are moving and not just continue to think about it.

Part of the tension, too, certainly is trying to produce some short term products that are useful to the department and have identified customers for what we are doing, at the same time recognizing that there are some broad conceptual issues here that are important to think through and much as the EHR issue on quality, there is also the EHR issue on population health. So, the things that it would be nice to take on that have that long view, at the same time we need to be responsive and productive.

Other members of the committee may want to add, modify, detract.


MR. HITCHCOCK: I think one of the things that was interesting that we talked about just a little, I don’t think we want to lose sight of, would be data issues, opportunities, what was learned from the hurricane disaster and the activities there that ensued. We talked about nothing really that — not immediately but when things died down, having some of the people come in who actually tried to collect and/or use data during the relief activities.

DR. STEINWACHS: I thought the other interesting thing would be to think about, you know, how do you follow those people in any way over time. Even things like HIS interviews a fair number of people. I don’t know, but if you dislocate enough people out of an area and there is an idea that a lot of those people are never going back, that you have to essentially ask people whether or not they used to live in a certain region of the country and whether or not they left because of —

MS. GREENBERG: I think that in that regard, I think, Kevin, you mentioned that there were quite a few studies done after 9-11, but that — or somebody mentioned that —

DR. VIGILANTE: But I will take credit.

DR. COHN: It was David Lansky.

MS. GREENBERG: Okay. That was where I connected that, but then not that much was done with that and there are lessons learned from that, although it is a different — you know, that was more localized. Interesting area.

DR. STEINWACHS: I think the other comment about September 11th was that there seemed to be very little that actually came out in the published literature that seemed to really be learned from it. So, a flurry of activity and I think that is in part at least what stimulated me to think about the question of how do you have some follow-up over time because if it is just the baseline information that you capture at the time of the event and immediately thereafter, that deals with mortality and sort of acute illness, but it doesn’t talk to longer term impacts that whether that is just traumatic stress syndrome or other exposure or factors, people’s lives that are radically changed and so on.

DR. VIGILANTE: Just from an empirical point of view, just from a preparedness perspective, this is probably the closest thing to a nuclear event that we are going to have —

PARTICIPANT: That we hope we ever have.

DR. VIGILANTE: And we hope we ever have in preparing for one and certainly the lessons learned because unlike most other disasters, you know, nuclear events are going to wipe out your infrastructure and that is what we have here. So, the effect of a population on wiping out your infrastructure and then attending to the needs of that population, which also has direct impact on their health is an imperfect but reasonable paradigm to be looking at for, hopefully, an event that will never happen, but certainly the one we should be looking at.

MS. MC CALL: I think there is another kind of learning in addition to these that we talked about and it is the fact that there is a lot of activity right now and yet it is not terribly coordinated and there is probably a lot of reasons for that, but there is the issue of and there will continue to be issues of the desire and the need to both know that other activities are going on and to know enough about them that you can try to either be informed by them or coordinate with them somehow. So, it is a meta-issue that even outside the specifics of Katrina is going to have a lot of implications for what it means to have aggregated data, what it actually means to have orders of magnitude, multiple orders of magnitude more data that you want to transform and the information that you want to transform into knowledge.

So, the mechanisms and how you do that, I don’t think we do very well today, let alone when we have much, much, much, much, much more to deal with. So, I would also like to use specific examples, like Katrina, to understand what worked, what didn’t work, even from a knowledge transfer and creation and management standpoint. Because I think that that is going to be an emerging issue as we move forward around quality agendas, population health agendas. We need to make some recommendations on how to do that better.

MR. HITCHCOCK: I agree and I think we have talked mostly about the impact on individuals, but there are also

we are, after all, the Population Subcommittee, but there are also issues around manpower and services provided and that sort of thing that would be of interest, I guess, to the larger committee.

DR. COHN: Carol, you certainly bring up the issue that I think many of us have had the experiences of having lots of data, but not quite the right information. That seems to be the ongoing conundrum that we all have. Actually, I understand that Jim Scanlon is spending a significant amount of his time trying to turn all the data into useful actionable information around the hurricane. So, maybe listening to him in November —

DR. STEINWACHS: We were going to invite him to our next — ask him to testify.

DR. COHN: Other comments on Population — I mean, certainly the issue of the hurricane disaster is a very real one that we need to sort of be looking at, I think, probably at the full committee level.

I am sorry. Somebody has their hand up. Do you want to go to a microphone and introduce yourself and make a comment?

DR. GELZER: This is a bit of serendipity here. My name is Dr. Reed Gelzer. I actually gave a presentation next door on data quality and electronic health records. One of the things that I wanted to mention — and I am sorry that this has already been discussed — is that we actually have a number of years of experience with a surveillance system that was built as a surveillance system. It is the military’s CHCS2, that was built specifically as a population surveillance tool as an outcome of all of the desert — you know, the first war in Iraq. So, there is actually some real world experience with trying to build a system that captures structured data on a population-wide basis to follow people over time and do prediction on.

So, we actually have something more concrete readily available to us to analyze these kind of questions. If that hadn’t been brought up before, then great. If so, then beg your pardon.

DR. STEINWACHS: Thank you.

DR. COHN: Thank you. Another source of investigation here.

Anyway, I think we just noted that as I think this is actionable by the subcommittee workgroup and probably a full committee issue to be thinking about as we sort of go forward over the next couple of months.

Agenda Item: NHII Workgroup

Now, I guess my report is from the NHII Workgroup and actually, quite frankly, after the personal health records report, but after a good night’s sleep, we will get back to working again.

I think what will happen there is obviously we have completed the report. It has taken a number of months and actually a couple of years of hearings. We will be meeting, I think, as part of the November full committee meeting and, hopefully, by that time we will have had a chance to begin to think about priorities and next steps and certainly the question will be is what we do independently versus leveraging versus at the request of the Secretary or whatever in terms of next steps, which, of course, is the same conundrum for every subcommittee and workgroup that we have, that there will I would say a variety of things sort of coming down the pike.

Agenda Item: Future Agendas for NCVHS Meetings

Now I wanted to take a minute just to talk for a little bit about the November meeting, now that I have already obviously surprised Stan because I was afraid he might leave thinking he was done after that report, but talk about some of the items that I think we have that we are sort of talking about and then I just wanted to spend a couple of minutes getting some input and talking about sort of how this meeting went and how we can sort of improve future meetings.

I think for the future for the next meeting I think we are talking about a variety of issues coming forward. I mean, one would be if there is an action from the Privacy Subcommittee, we will obviously be bringing that forward and obviously trying to assure that we provide enough time for what may be a very rich conversation if the personal health record conversation is anything as a pilgrim to that.

I think they are also planning on inviting Dan Friedman back to sort of complete his — what I thought was actually a fascinating series of observations and presentations from our — I guess our last meeting, as I remember. So, I think that will be another piece.

There was a discussion we had at the Executive Committee with the Board of Scientific Counselors. I think they are going to be coming, along with NCHS, to give some update on sort of the issues around use and dissemination of vital statistics data from the States because probably there are some HIPAA issues now that are surfacing and I think we will want to get briefed on that after that has been aired a little further and then I have here “Update on International Classifications,” which I think we will do if we have time. If, indeed, Standards and Security is going to talk about ICD-10 in December, you know, we may decide exactly — I mean, it depends on how that all fits together, but we will sort of figure out how we do that.

Obviously, I now have this learning from the hurricane disaster and we actually — I think we have a speaker that we can think about, but we may get additional speakers. Now, obviously, the Executive Subcommittee will be having a conference call to sort of refine this and put it together. Actually, since I already mentioned it, obviously, we are talking about a couple of hour session on secondary uses of data. We were not thinking of this as a single 45 minute, 20 slides and this is it, but something — trying to getting everybody up to speed on exactly what we are talking about on the opportunities and issues. I think Stan has done a great job providing leadership to that. I think it is really a question of trying to balance, not boring people from the Standards and Security Subcommittee with also making sure it is basic enough to sort of bring everybody up to some level of competence about it.

Anyway that is what we have for the meeting — yes, please.

MS. GREENBERG: We had also talked about inviting Dan Friedman to come back.

DR. COHN: Oh, I mentioned that.

MS. GREENBERG: Oh, I didn’t hear that. I am sorry. I was reading. I was actually reading the items for the agenda. I also have on here the scope of work items from CMS on quality.

MR. HUNGATE: I suggested that we ought to know better what they are doing in the scopes of work because I think it is one of the major —


MR. HUNGATE: The QIOs. It is a major impact on the system and we ought to understand it better.

MS. GREENBERG: Do we want that at a full committee level?

MS. MC CALL: No, I think it is just a point of order that it needs to — I am sorry — I understood that to be a point of order that at least it would be integrated into the Quality Workgroup and that is part of — it is one of the oars that is not as manned as it could be now. So, those I think are givens. The question is whether or not it is sufficiently interesting to everybody else that they would also want to be involved, in which case we can elevate it. But I did not understand that to be something that we wanted to be at a full committee level, unless —

MS. GREENBERG: You can work that out okay and let us know if you do.

DR. COHN: Well, I think it is a joint question.

MS. MC CALL: We are going to do it. Do you guys want to hear it, too? If not —

DR. COHN: I would say it depends on how we put all the whole agenda together. So, we will talk about where it goes. I think it is interesting, but it almost leads me to the next issue about how exactly we put together these meetings, which — but I do think it is potentially a very interesting issue. I just don’t want to have you guys hold until February because we didn’t want to do it, that we didn’t have time in November. So, make sure it gets handled in the November time frame one way or another.


MS. GREENBERG: Also this was before Hurricane Katrina.

DR. COHN: Justine had her hand up.

DR. CARR: I wanted to go back to what Stan had mentioned about the way Harry put together what Standards and Security is doing and he nicely outlined and we are trying to copy it, what are the interfaces, what are the areas that they periodically have to get up to speed. What is the balance of initiatives current, near term, long term? I just found it to be a superb way to impose discipline on what we do and I think there are two values. One is that we get agendas that are relevant and that are doable and that we track them, but I think as all of our work is overlapping, it would be extremely helpful to see where folks are going so that we are — we pick up on the synergies or we help each other.

So, just —

MS. GREENBERG: Do you want to recommend that everybody do that?

DR. CARR: Yes, I do.

MS. GREENBERG: Do we know who provided Harry with the technical support?

DR. CARR: His admin, whose number is — no. I mean, it is not a big deal. It is just that anybody could do it on a power point.

DR. COHN: I am trying to think if we have that power point around someplace, some people could just put their stuff into that power point.

DR. CARR: As a matter of fact, I did make some templates that we could put things into. We haven’t gotten to it yet, but I can share that — I will send them around.

MS. GREENBERG: Do you want to send it electronically? Send it to us and we will —

DR. CARR: Sure.

MS. GREENBERG: You could send it, too, but I was thinking if we sent —

DR. CARR: Let me send it around just so folks can get a flavor for what it is. I have taken his categories and it is a little bit of mix and match, but I think the idea is you know who your contact people are and who you need to hear from periodically in your committee. You know what the immediate work is, where your surveillance is and what deliverables you have promised in what time frame.

As I said, I think that here — we will all benefit by knowing what each other is doing in real time.

DR. COHN: I guess I would ask other subcommittee and workgroup chairs is this something that we ought to be thinking about trying — do you want to take a look at it and then we will — I mean, I guess the question I have on this one and it is a little off the point, but we at the back of our books have a work plan that we sort of maintain. I am sure my own prejudice here, but I have never found it to be as helpful as I would like. The question is potentially graphic showing sort of near, mid and long term pieces and all of that, is that a useful supplement?

DR. CARR: Simon, that is a part of it, but the other part is who are you interfacing with? What groups do you know about and are we addressing the same questions and do we have the right point person? Are we all going to the same point person or should we be going to?

The work plan is certainly helpful but the kind of interfaces and surveillance activities I think were also of interest.

MS. GREENBERG: I mean, it seems as if the work plan, which is, you know, it is as much for our internal use to just try to track things, you know, did we get responses to things, you know, have we — where have we held hearings? Are we planning to have future meetings? You know, it is more kind of on the ground. But, I mean it seems to me the most valuable thing was to see if we could make and this process sort of electronic and drill down.

I mean, obviously, this would take some resources to develop it, but — and then, I mean, my goal would be that the — because we just do the work plan ourselves trying to gather the information as the executive secretariat, but if the lead staff would fill in for their

— I am not criticizing lead staff. We haven’t asked them to do this, but — you know, or the chairs or whatever. So, then we have the dynamic thing that everyone could access, people would have — it is sort of like role access. You could update for the chair and the lead staff or the co-chairs and the lead staff could update for quality but they couldn’t update for some other committee, you know. I mean, I don’t think that is pie in the sky, but I don’t currently have the resources to organize it, but it is something to think about and then you could just go and check —

DR. CARR: I think the work is really within the committees to clarify their thoughts, but I thought Harry’s report yesterday and Stan’s today, I can hear it and not having been a part of that work, I can visualize exactly what they are doing and where their efforts are going. So, if each of our report outs even follows that format, you know —

MR. HOUSTON: Does NCVHS do a strategic plan for this vision document that is sort of supposed to guide it for a multi year period or is it really intended to simply to sort of look sort of at the next —

MS. GREENBERG: Well, we have done strategic planning through the Executive Subcommittee. Part of the problem is that we do have a lot of — you know, people go on the committee, people go off the committee. So, I mean, like a five year plan probably wouldn’t make sense in that people’s terms are four years. We developed — the retreat we had up in Cambridge, where we had sort of a strategic document, but I would say we have done pieces of it, but I mean, probably not the level of rigor that you are suggesting. We had a mission statement. We had, you know, things like that. And that is our — which actually I think we have tried to pursue since getting the population focused into everything that we do and short term and long term, you know, products and all of that.

But certainly we can do a more systematic and better job at it. Basically, though, that has been the role of the Executive Subcommittee.

DR. COHN: Yes, and that is one of the things that we try to do at the retreat. However, obviously, this year, given the — it is hard to do much of a long term plan or — and given the fluid nature of the environment right now.

I don’t know if that answers your question.

MR. HOUSTON: I just was wondering. I wasn’t expecting any particular answer.

MS. MC CALL: It is worth, you know, just as the Executive Committee, just thinking about it. Again, the meeting was different than you thought it was going to be last time and, yet, if you think about what happened at that meeting and why it was different, there is probably no better time to have something on a page, kind of like strategy on a page, which is really what these documents are. They are guides.

Can you articulate in one page what your focus is, who you tend to play with, what your, you know, today, tomorrow and after work plan is? So, that is what we are going to do and I think we are going to do it and if we find it valuable, you know, you can do it, too. But it would be wonderful if there was something like that that could emerge over time through the Executive Subcommittee. And it may end up being maybe not a top down approach. Who knows? For now it may end up being a synthesis, kind of a bottom up from what is in Standards and what we hope to do in Quality and you can use that.

MR. HOUSTON: I was reading an article last week about the way that HP and the president of Hewlett Packard

— the Hewlett Packard plant and he says up and figure out where I want to be and I figure out where I want to be and I work backwards. I know it doesn’t completely work in this particular environment but it would be good to sort of say what are the long term goals of NCVHS and maybe if it is only two years, maybe it is three years and sort of say, okay, what do I need to do in reverse to get to the point where I think — and recognizing there is always going to things that we are going to respond to that are at the request of the Secretary or somebody that are sort of thrown in there also, which may be very important and change that focus, but it would be helpful to sort of say where do we want to be and then how do we get there.

MS. GREENBERG: Well, when you get these requests and I think we gained a lot of that actually at the Executive Subcommittee retreat, you look at it and you say, okay, you know, we have been asked to do something and we want to be responsive. How does this fit in with what we were trying to do in any event and with what we see as our mission and what we have seen as our, you know, projects and products, et cetera? Even if you don’t have the option of saying “no” or want to, it allows you to kind of, not just take this on a blank sheet but to look at how it integrates with what you have seen until this person came along with your mission.

DR. COHN: I think you all bring up very good points. I have to say that I consider the process sort of started when we were sort of forced to, I think, articulate and I think maybe you saw the NCVHS fact sheet, sort of our value and the — and what we really bring to the table. If one thinks about it, I mean, the many years I have been around, I have not seen anything that has been so distilled and so focused in terms of all of that. That is sort of the foundation for building in the type of way you are describing.

MS. GREENBERG: I do think, though, we made a concerted — of course, every chair and every new chair always thinks that the world started when they came on, but the executive secretary knows that is not true. I couldn’t resist. But I do think we should pull that report — what year was that that we were in cambridge? Do you remember? We actually hired someone, a facilitator and a — but — it was about four years ago. We probably should pull that out and it was kind of a strategic planning document and see and get it around to everybody.

DR. VIGILANTE: Don’t we have to go back to Cambridge in order to get the feeling for this?

MS. GREENBERG: It wasn’t Cambridge, England. It was only Cambridge — I mean, if you are interested, we can do —

DR. VIGILANTE: I think we should talk about the era before Simon and the era after Simon. I think that is really —

DR. COHN: I have to remember — I am just sort of reflecting on how long that was and that has been four to five years ago at a minimum and maybe even a little longer. What I was trying to say is a statement that I think these things need to be refreshed and Marjorie does have a much longer memory —

MS. GREENBERG: Not really memory, but —

DR. COHN: Now, Marjorie, you wanted to go back — I don’t mean to go back to our sort of agenda for November in terms of the issues, but I think I have heard that we probably should be doing some more strategic planning. Did you have other issues?

MS. GREENBERG: Well, there was an issue down here and that is what I was trying to say that it was not knowing that we were going to have Hurricane Katrina. One of the items that came up, I believe, at the Executive Subcommittee retreat or on a conference call at the Executive Subcommittee was to establish contact with the Department of Homeland Security’s chief medical officer because there is a new chief medical officer, John Ringle, and that Harry, who is not here now, but he knew the person or might be able to make a contact because they had — there had been a period in which there was not a chief medical officer, but the idea was that his responsibility would be more interfacing with, you know, the health agencies and, of course, it is highly timely in light of recent events.

Steve Steindel, I think, had brought this to our attention as well. So, I don’t know whether November, again, is the time or not, but —

PARTICIPANT: It could also be part of the

Katrina —

DR. COHN: He and Jim could be on a panel together.

MS. GREENBERG: November may be too soon. So, maybe February, but in any event if that is — that goes with the discussion of Katrina.

The only other thing I did want to, if you don’t mind, just mention the decision we came to about minutes, subcommittee minutes.

The staff brought a proposal to the Executive Subcommittee, which they embraced and it was most relevant to the chairs and the lead staff of each subcommittee, but at the same time, I thought that everyone should be aware of it. I actually thought it was summarized in here. I am not sure that I see it here. But in any event, we have had a variety of success, variable success, let me say in getting timely minutes from the subcommittees and the workgroups finalized, posted, et cetera. It has been a big burden on chairs, on staff and really reflecting and going back and looking, we have seen that they are not very timely for several areas. We don’t have them in a timely way. By the time we do get them, they may be a little too old.

Then when people do report or really go back and try to assess what happened in a hearing or they look at the presentations, which we post with the agenda on the web site and they also often go back and read the transcript if they are really going to be writing up something.

So, our — for the full committee and the Executive Subcommittee, we have been able to get those out in a very timely way and we will continue with the process, which is a full transcript and minutes, full minutes, but not, again, posting presentations and trying to keep the minutes, you know, to a reasonable size. We had gotten a few years ago completely out of hand with 60, 80 page minutes. So, we have cut back from that to I think about 30 pages, but in any event — but for subcommittees and workgroups, other than the Executive Subcommittee, unless specifically requested by the chairs otherwise, we will transcribe all subcommittee and workgroup meetings, as we have and it is important for our public record and also if you are going to write minutes, because the people who write the minutes aren’t always at the meeting, but we will do very abbreviated minutes for the subcommittees and workgroups.

We will have the participants, any key action items, future plans, meetings, et cetera. Then if you want the detail, you go to the presentations, you can go to the transcript and of course a lot of it comes out in the subsequent report, the findings. It does put a little more of a burden, a different burden on the chairs to — at the end of the meeting, to make sure that you are summarizing just what your action items were and what your future plans are because then we will just pick that up from the transcript or the lead staff will pick it up.

In any event, I think we really want to not have to burden people after the meeting so, other than those that we hire to burden. So, we will pick that up from the transcript and we will go forward. So, this is a change. People seem to be shaking their heads.

DR. VIGILANTE: I think that is good. We don’t want the sort of he said, she said narrative of every minute. It is just not productive and who reads it and who remembers it and I just think the action — I mean, that is really the way to go.

MS. GREENBERG: We will have, as I said, the minutes of the full committee meetings will continue. They get a lot of distribution.

DR. COHN: Certainly, the Executive Subcommittee felt this was a good idea. I am glad that nobody else is providing any complaints.

MS. GREENBERG: I had decided that I earned my keep with that suggestion.

DR. COHN: Yes. Well, thank you.

Now, I just want to make a couple of comments here and ask a couple of questions. This meeting has felt a little different than most of our meetings. Now, certainly one of the pieces is that we are in a different environment, but as I was looking at the agenda, I do want to reflect that we have actually only had two speakers this whole meeting and one of them was really closely tied to an action item yesterday and then, you know, a very good presentation today, which is obviously far fewer than we normally have.

Now, I am not suggesting that we take issues off from the future — from this next November meeting, but I am sort of curious about what your thoughts are about the mixture between, you know, conversation, work versus presentations at meetings and I am just sort of curious.

John Paul and then Paul.

MR. HOUSTON: I don’t know. It seems like a lot of times we get to these meetings and the committees actually have substantive work it needs to get done and, you know, we have an hour or two for subcommittee meetings and often, I think, it would be a better use of our time if we had more focused time on some of the subcommittee work. By the time you get everybody together and, frankly, if there are issues out of the subcommittees that need to be pushed up, even if it is interim, we can push them up during this meeting with the other people participating so that we can get some better guidance and then take that back to the subcommittee.

I think, you know, we are working on this particular letter on the NHIN and privacy. I think, frankly, in November it might be expeditious for us to come up with some short list of issues that we have, bring them forward to the committee, get their perspective, take them back so we can continue to fashion the letter. I just think having more focused time to work on that letter, I just think would be a better use of our — a good use of time. Let’s put it that way.

DR. COHN: Paul.

DR. TANG: I think we are working on very substantive opinions right now and I think the discussion has been very helpful. Probably we spent more time on wordsmithing in full committee than we needed to, but I think it is very healthy to have a discussion and to arrive at a consensus that we can all live with.

Our subcommittees are filled with presentations. I think we even talked about allowing more time for similar discussions in the subcommittees so that we can rehash some of this out beforehand and present the opinion or the options and the rationale to the full committee and sort of digest some of the comments ahead of time.

I think in general we are talking about very meaty substances. We should have good discussions. Perhaps we can use our time a little bit more in the preparation, which is, you know, discussions within subcommittees and better presentation to the full committee.

DR. COHN: Other comments?

DR. STEINWACHS: One of the things I enjoyed about this meeting was it seemed to me that even though we spent time, you know, trying to tear your document apart, Simon. But it really was a chance to have people come together as an entire committee. Part of that was a learning experience because when you look at the subcommittees, they are off in very different areas. So, the only time there is a synergism here is either by individuals who span more than one committee and most people do, but that doesn’t really bring the group along.

So, many times our meetings are such that, you know, I sit here and I vote for things that if you said do I really know in a sense that I — not in detail, but do I really have a good gut feeling for what is going on, I will say not really, you know, and I trust. So, I think one of the benefits, even though, you know, a drawn out process, really getting everyone here focusing on key recommendations and the emerging area was that you brought all of us along and you gave some insight into where are areas that maybe committees that haven’t ben relating much to other committees ought to be thinking about doing so. So, I think trying to find that balance and I think John Paul’s issue, too, of how much time is allowed for subcommittees to meet or is the idea mainly that subcommittees meet outside of the full committee meetings.

DR. COHN: Carol, did you have your hand up?

MS. MC CALL: Yes. Hopefully, I am not repeating too much. I actually thought that the letter and the time that we spent on it was valuable, not because I thought we were wordsmithing it, but because of what was really happening and what was really happening for me because I am not involved in those subcommittees was that I was being not only introduced but really doing a lot of thinking about very important concepts so that I could have a point of view, you know. So, I was coming up to speed very quickly, you know, almost a vertical climb to try to do justice to all of the work that had been done and how difficult the concepts are.

So, I found it very valuable and I found myself wishing that I knew more about it, that I could do more justice to an opinion about it because we all have a responsibility to the letter and what it says, which is why it comes here. So, I found that to be a proxy for what I think, you know, John has said and maybe what you were talking about, Paul and Don, that there is value in us truly discussing and dialoguing. That is why we are here, you know, is — that is why there are subcommittees and why there is a full committee because there is work that needs to get done, but it does need to be synthesized.

So, I rather liked the fact that we — it wasn’t all presentation. I like having a better balance. Now, whether it is — all the balance is achieved say meeting by meeting or within each meeting, you know, we can decide those things, but I think it is important for us to actively and consciously integrate our work and that was one mechanism to do it. There may be other mechanisms.

I would love for us to have to — I would love to be in a position for Bob and I to stand and deliver a deep articulation of what is our strategy on a page, if you will, and give folks a chance to input into that and to dialogue about that and really truly see a link to the work. That is time-consuming stuff. So, I like the fact that it wasn’t all presentations.

DR. COHN: Thank you.


MR. ROTHSTEIN: Simon, I want to add my support for the idea that we spend our time primarily doing our work as a full committee or as subcommittees. I think that sometimes thinking over the past, we have had speakers, who were not directly relevant to what we were doing and the ones who I think are the best and most effective for the full committee are the ones who addressed sort of cross cutting issues or who give big picture talks and allow us to sort of imagine how our own interests and our own subcommittees need to take that and run with it.

For example, and I don’t mean to be too critical, yesterday’s presentation substantively was excellent, but it was six months too late. I mean, we had virtually completed our work on PHR and it would have been much nicer, I think, more appropriate if we had that six months ago. I also think that Carol’s suggestion is a good one and this follows on John’s idea and I hadn’t thought about this, but — and that is traditionally we have kind of worked in our own little world and then dropped the finished product on the table.

Maybe it would be valuable if we did a sort of a joint think through the big issues, not line by line, the way we do at the end, but what we are thinking about and getting input for the various subcommittees that will help them in the drafting stage and linking it to the Privacy and Confidentiality, I mean, we could talk about one or two issues or, oh, as much time as we had on the agenda. That could be very valuable to us.

MR. HOUSTON: The dialogue is going to happen at some point. It is probably more constructive to do it early on. You have the key points we want to put in the letter, make sure we get the input and then fashion the letter around what we have got in terms of consensus so that we aren’t going back and saying, okay, how do we fit this into something that is already pretty much been baked and, you know.

DR. CARR: I second everything that everyone has said. I felt this was a very excellent meeting and the speakers resonated very much with the issues at hand. I would say, too, that when we have the speaker that is followed by another speaker and there is maybe a couple of cute questions and answers, but we don’t have the opportunity to have dialogue about what we have heard, I find it is very hard to remember what they said or why it was important. I think sometimes when we don’t have enough time, there is one or two people who know the field, who will ask an additional question, but the rest of us are witnessing to something that must be important to someone, but we don’t quite know how to engage.

MS. MC CALL: I would echo that. There have been many times — and the presentations are always so excellent. They really — they were, but they came one after the other and it was like a drink out of a fire hose and I never got a chance to just kind of swallow and say, okay, what are the implications for me, what are the implications for us. So, just a pause in between and I think that we would get a lot more value out of every single person that we invite to come here.

DR. COHN: I appreciate your input on all this. Obviously, every meeting is going to be different and there are different issues, but I think it is useful to sort of reflect on sort of what is working and what isn’t, so we can try to make sure that sort of continues.

I think Paul made a comment, well, we spent an awful long time on that letter. You didn’t say it quite that way, but we did spend a long time on the letter, but, you know, we weren’t wordsmithing the body of the text. We were wordsmithing the recommendations. Unfortunately, at the end of the day, the recommendations, they need to be right and we can’t say sort of almost what we meant to say. We need to say what we really mean to say there.

DR. VIGILANTE: I think where they are unclear, it helps us understand that our language — the concepts actually may not even be clear to us and the exercise of making it clear to ourselves illuminates whether these concepts can even be expressed or how they are — so, I think there is, you know, value in —

DR. COHN: Paul.

DR. TANG: So, just as a — and I think we are all saying very similar things — it was helpful in terms of what Carol said, you know, the discussion is so distanced from when the topic is raised, it was helpful for us to get something in the full committee that immediately has time in the subcommittee to work on it. That was helpful and that is what — another thing that worked.

MS. MC CALL: I also would add that actually having the words on the page, I think is valuable because there is something very concrete to react to, not a concept but it is that line, it is that word in that sentence. We are not wordsmithing because I felt that we were playing with very important concepts that we had to go through. It wasn’t about a comma or a rhetorical difference.

The only thing that I would have added was not that that process doesn’t have to happen, but that if we are introduced to those concepts and the ones that are being wrestled with along the way, that process will be better. It will be faster. It will be —

MR. HOUSTON: Our experience on this last letter, we actually as the workgroup, worked on the recommendations. We focused almost solely on the recommendations. I think at the point where we had recommendations in a form that we felt like were fairly solid, I mean, I think those are the types of things that this committee could react to and then we could work on the body, but I think the recommendations, even in this committee, we spent a lot of time really working on the recommendations. So, I think maybe that is the point, where if we have those recommendations in a form we can take forward to the committee, get the substantive impact, go back, finalize those, finalize the body around it.

DR. COHN: Well, you know, I think as we move forward, we are going to be getting more work and need to move a little faster at certain times. So, we, obviously, going to have to play with different processes. I mean, one of the things we will take with the Executive Subcommittee is if there are ways to — you have conversations to at least inform people who are on a specific subcommittee or workgroup about the information prior to it because I think that may actually help both subcommittee members as they listen and look, realize that there may be some issues and help from their thinking up as well as help inform people. But we will be playing with a variety of different methods, I think, as we go forward.

Paul and then I want to begin to —

DR. TANG: Something just struck me about — you know, the NPRM and when they come back after the public comment, they always give background, what our thinking was, what the comment said and how we reacted to it. That is so much — that is where the — is versus the actual rule and it strikes me that we — there was one time we were talking about something for whatever it was, 20 minutes, and then Mark said, well, here is the context and I think it was — go, oh. I wonder, that is what I mean by preparation. We have done the work. We just maybe you need to capture for the rest of the folks, bringing up to speed and then let’s talk about the issue after we have gotten the context.

It just struck me that that is what the register does with the NPRM. It is very, very helpful.

DR. COHN: I appreciate your input. This just helps us design more useful meetings for everybody. On one hand, this meeting feels real different. It was really that we were doing things a little differently this meeting and that is very useful to get some feedback about how this can go forward.

Am I in the wrong city?

MS. GREENBERG: No. I am just wondering, the Executive Subcommittee tends to have its annual retreat where it is somewhere that we don’t normally meet and it is a little more informal and then we all — in my experience and we have been doing this since, oh, I don’t know, 1987 or something, they are always really good, fruitful, rich discussions and I am — well, one is, I mean, you know, if we could, it would be good to have that kind of environment for the entire subcommittee, if not once a year, once every two years maybe where we could really not have any presentations and in a more informal environment. It does generate different kinds of discussions.

But I am also just wondering and maybe it was just because of the agenda and the letter and everything, but we are not — I don’t think we feel as much that we are — and I am not suggesting that we continue to meet here. The lack of food service is quite frustrating — we are not in the spotlight here so much. I mean, I think when we are in the Humphrey Building, it has a very kind of formal, you are in the Humphrey Building. You know, you are right by the Capitol. It is a different flavor and if there was a more

— a little less formal kind of feeling being out here in the hinterlands of Hyattsville.

I just wonder if that was at all a factor. I mean, the Board of Scientific Counselors has bemoaned that they meet here and not down at the Humphrey Building because they say that is where the action is. I think that this committee needs to continue to the extent that we can to meet near the policy makers that we advise, but it is just a thought of maybe an occasional meeting in which we are in a somewhat more informal environment.

DR. COHN: Well, Marjorie, I think maybe to reframe what you are describing, I think what you are describing is we have had retreats of the Executive Subcommittee. Maybe we need from time to time to have a full committee and the committee is not that big. We could certainly have a retreat. Many other groups have one once a year.

I would actually have everybody think about that one because that may actually be a very good idea. Whether or not we have the budget to do it, I think we would have to look, but it might make a lot of sense.

DR. STEINWACHS: Do it early in the budget year.

DR. TANG: It might also help with consensus. The field can be very disciplined and then particularly with a couple of the subcommittees that have got really contentious issues, may actually help.

MS. GREENBERG: Yes, that is what I am thinking.

DR. STEINWACHS: It is also a way when you bring new members on and every year you have new members, to really have a chance to get to know people and know what is going on, which doesn’t happen in a formal meeting.

DR. COHN: This is a very good idea. I am going to apologize to everybody. As you know, I like — even though we are running about an hour and 20 minutes early from the published schedule, I have been trying to tell everybody that we will be done no later than 2:00 and we are running about ten minutes late.

MS. GREENBERG: I just want to thank my staff here at NCHS for all of their —

DR. COHN: The meeting is adjourned.

[Whereupon, at 2:13 p.m., the meeting was concluded.]