[This Transcript is Unedited]
Hubert H. Humphrey Bldg.
200 Independence Ave., SW
Washington, D.C.
DR. COHN: Good afternoon. Could everyone please be seated? We are going to get started here momentarily. We are still doing a little housekeeping here.
I want to call this meeting to order. This is the second day of meetings for the National Committee on Vital and Health Statistics. The committee is the main public advisory body to the U.S. Department of Health and Human Services on national health information policy.
I am Simon Cohn. I am actually standing in for John Lumpkin, Chair of the committee, who unavoidably had to be away today. I am the Chair of the Subcommittee on Standards and Security. When I am not here, I am the National Director for Health Information Policy for Kaiser Permanente.
I want to welcome fellow subcommittee members, HHS staff and others here in person. I want to remind everyone, as we do every time we go through these introductions, that this is being broadcast over the Internet, and you need to speak clearly and into the microphone when you talk.
The agenda for this afternoon is a little bit changed. I should make a comment on that before introductions. The consolidated health care informatics initiative which was scheduled for 1:05 is actually not on the agenda. The Subcommittee on Standards and Security met with them for about an hour just now. Instead, we will move directly after introductions to reports and action items, and then talk about future NCVHS agendas. I think the hope is that we would certainly be done by 3 o'clock, and knowing some of you have to leave a little bit earlier, we will try to finish up in a timely fashion.
With that, I would like you all to introduce yourselves. If there are any items which we have coming before us today for which you need to recuse yourself, please so state in your introductions. Jim.
DR. SCANLON: I'm Jim Scanlon from the HHS Office of the Assistant Secretary for Planning and Evaluation, and I am the executive staff director for the full committee.
DR. ROTHSTEIN: I'm Mark Rothstein from the University of Louisville School of Medicine, member of the committee.
MR. LOCALIO: I am Russell Localio from the University of Pennsylvania School of Medicine and a member of the committee.
MS. HANDRICH: I'm Peggy Handrich with the Wisconsin Medicaid Program and Wisconsin Health Information, and I am a member of the committee.
DR. HUFF: I'm Stan Huff with Intermountain Health Care and the University of Utah in Salt Lake City. I am a member of the committee. If we talk about HL-7 or LOINC, hen I need to recuse myself from those discussions.
DR. STEINWACHS: I'm Don Steinwachs, Johns Hopkins University, and member of the committee.
DR. HOUSTON: John Houston from the University of Pittsburgh Medical Center. I am a member of the committee.
DR. LENGERICH: Gene Lengerich from Penn State University College of Medicine and member of the committee.
MR. BLAIR: Jeff Blair, Medical Records Institute, member of the committee.
DR. HARRIS: Richard Harding, University of South Carolina, member of the committee.
DR. BARETTSON: Judy Barettson, Center for Medicaid and Medicare Services, liaison to the committee.
DR. ZUBELDIA: Kepa Zubeldia with Claredi Corporation, member of the committee.
MR. HUNGATE: Bob Hungate, Physician Patient Partnerships for Health, member of the committee.
DR. MAYS: Vickie Mays, University of California-Los Angeles, member of the committee.
DR. CANAAN: Susan Canaan, writer for the committee.
DR. JONES: Catherine Jones, NCHS, CDC.
DR. PAPPLARDO: Joanne Papplardo, Indian Health Service.
DR. JACKSON: Betty Jackson, National Center for Health Statistics, staff to the committee.
(Whereupon, introductions from the audience were performed.)
MR. HITCHCOCK: Dale Hitchcock, HHS, staff to the Subcommittee on Populations.
DR. GREENBERG: Marjorie Greenberg, National Center for Health Statistics, CDC and executive secretary to the committee.
DR. COHN: Before we proceed, is there anyone else calling into this meeting other than Richard Harding? Great.
We will move directly into reports from subcommittees and work groups. This incudes letters and other action items from the work groups.
The first one is the Executive Subcommittee, which I see I am actually assigned to report on. There actually is nothing to report, except that Aida will be a retreat of the Executive Subcommittee in November after the November NCVHS meeting. I'm sure there will be a conference call scheduled between now and November to help finalize the November NCVHS agenda. But beyond that, I have nothing particularly to report.
Any questions from anyone? Marjorie, do you have additional items from the subcommittee?
DR. GREENBERG: The only thing I would say is, if members of the committee who are not on the Executive Subcommittee have issues that they would like the Executive Subcommittee to address, you should let us know, because we will be developing the agenda. There will be another full committee meeting before the Executive Subcommittee.
DR. COHN: Exactly. The second item is the NHII work group. Many of you will remember a letter that we worked on yesterday. Unfortunately, I don't think we have copies of it.
DR. STEINDEL: Simon, it is being worked on right now.
DR. COHN: Okay, so we will defer that report until later. Item there is the Subcommittee on Standards and Security, which I do chair.
There actually is a letter that I wanted to point out to you on your desk, and I will read it over. Jeff, I would certainly ask for your help as Vice Chair, if there is anything else we need to add as we go along here.
The letter, and I will just read it, is, Dear Secretary Thompson. The National Committee on Vital and Health Statistics commends you for your commitment towards government-wide adoption of clinical data standards that you first announced on March 21, 2003. NCVHS recognizes and appreciates that there is a new momentum to adopt clinical data standards that is driven by you and the consolidated health care informatics initiative.
Consequently, NCVHS is now working closely with CHI to study, select and recommend domain-specific patient medical record information terminology standards. We have mutually developed a process that allows NCVHS to discuss in open, interactive sessions CHI recommendations as part of the CHI council acceptance process. Any comments before I move on to the body here?
The NCVHS has the following comments on the attached set of CHI domain-area recommendations. First, the NCVHS concurs with the CHI recommendations for unit domains. Second, the NCVHS concurs with the CHI recommendations for lab result content, as modified in the attached document. The third is, the NCVHS concurs with the CHI recommendations for demographic domain, as modified in the attached document.
We understand that the next stage is formal government adoption which the NCVHS, as noted above, supports. We are excited about the value of this continuing process.
Sincerely, John Lumpkin, Chair.
We all talked about the units and the lab results yesterday. What you see is a very minor modification to the demographics recommendations, which are essentially for HL-7 demographics content, but a stronger worded need for mapping and harmonization with X-12.
John Houston.
DR. HOUSTON: Just one minor point. In the last paragraph, you say, we understand the next stage is formal government adoption, which the NCVHS, as noted above, supports. We really didn't note above that we support it. We are supporting it. We concur with the decisions of CHI. So I'd just say we remove as noted above, because that is our conclusion, that we concur with the recommendations of CHI, and that we do support formal government adoption. So just a minor point, take it or leave it.
DR. COHN: That's fine.
MR. BLAIR: I don't think we need as noted above, either.
DR. COHN: Great.
MR. BLAIR: It is such a short letter.
DR. COHN: And you will see probably from every meeting for the next while letters like this, filled with attachments.
Now, is there any further discussion about this letter? Is there a motion on the floor?
MR. BLAIR: I'll be happy to make a motion that the full committee approves this letter.
DR. COHN: Is there a second?
DR. HOUSTON: Second.
DR. COHN: Discussion? Marjorie.
DR. GREENBERG: This modification to the demographics document, which is the last text page before the matrix, I think it was supposed to say, it is also recommended that a separate group maintain a mapping to X-12, and where appropriate initiate harmonization efforts.
DR. COHN: Thank you. I think that is a friendly amendment.
DR. GREENBERG: Yes.
DR. COHN: Other questions, comments?
DR. HOUSTON: I still second it.
DR. COHN: All in favor?
(Chorus of Ayes.)
DR. COHN: Abstentions, negatives? That piece is passed. Other information on the subcommittee. Our next hearings are scheduled for October 28, 29 and 30. On the 29th, we will start out spending much of the morning and part of the afternoon talking with CHI about more domain recommendations. The latter part of the 28th will be a discussion on HIPAA, and any outstanding issues that may be coming from the October 16 implementation of the administrative and financial transactions regulations.
Day two, which is October 29, will be a hearing on ICD-10. We spent some time today discussing that in the subcommittee. It was an interesting conversation. I think that there are some things that are of value, but obviously we will be reflecting and working on both questions for the hearing as well as potential letters and all of this for the October session.
On October 30, the session will be on the PMRI letter and recommendations. Hopefully there will be three action items for the November meeting.
I also wanted to announce, in December we have hearings also on the 9th and 10th. Security will be a topic, and there are others to be determined. We have also identified hearing dates for the first half of 2004, and they are January 27 and 28, March 30 and 31, and May 25 and 26.
DR. GREENBERG: Would you repeat those again?
DR. COHN: Sure. January 27 and 28, March 30 and 31, and then May 25 and 26. Those are hearing dates for the first half of the year. I think the intent is that we will revert to a two-day hearing schedule as opposed to our more recent three-day hearing schedules.
Jeff, do you have any comments to make regarding PMRI or other items?
MR. BLAIR: Not at this time, thanks.
DR. COHN: Okay. I think that is the report of the Subcommittee on Standards and Security. The next committee is the Subcommittee on Privacy and Confidentiality.
DR. ROTHSTEIN: Thank you, Simon. The subcommittee met this morning to decide on the agenda for the upcoming hearing. I want to give you some information about our next two hearings. The first will be November 19 for a full day, and November 20, a half day, so it will be a total of one and a half days of hearings that we will have. The three topics of those hearings will be public health, research and an open session in which we invite health care industry, trade associations and professional groups as well as consumer groups to talk about issues related to HIPAA implementation of their concern.
Our second hearing will be scheduled on February 3 and 4, 2004. We have identified three of the four topics for that hearing, and we have left the fourth one open for the time being, so that we can decide on that at a later date after our November hearing.
The three topics that we have approved so far are schools, law enforcement, and the problems involved in the payment train and sharing of information in health care reimbursement.
We plan to conclude these hearings in February and then have a letter containing our recommendations available for the March meeting of the full committee. We hope to address these issues at that time, and then perhaps move on to other issues. We never run out of HIPAA issues.
DR. COHN: Any questions for Mark?
DR. HARDING: So the dates were February 3-4?
DR. ROTHSTEIN: Yes, Richard.
DR. HARDING: Thank you.
DR. COHN: The next report is from the Subcommittee on Populations.
DR. MAYS: Thank you. We are coming back with two letters that we have revised, based on comments yesterday, and then I'll talk about the meeting we had this morning in terms of what is on our agenda.
Can I ask you to please pull out the draft letter to the Secretary, recommending special population surveys, 9/24/2003? We will start with that one, and I will just read the paragraph and stop at the end of the paragraph for any comments.
Dear Secretary Thompson. The National Committee on Vital and Health Statistics, NCVHS, through its Subcommittee on Populations, continues to assess the adequacy of federal data to document and monitor the health of racial and ethnic minorities in the United States and its territories. Such data are necessary to monitor the Department's strategic plan to eliminate health disparities. The data can also be used to determine the extent to which Departmental initiatives are contributing to the health needs of specific racial and ethnic minorities.
The single most compelling, our current request that the subcommittee heard in its four recent hearings is for the collection and analysis of health data on subgroups of specific racial and ethnic minorities, especially those concentrated in geographically distinct areas. These data are urgently needed to adequately monitor the health status and health care quality of the diverse U.S. population.
Those who provided testimony, e.g., American Indians and Alaska Natives, Native Hawaiians, Asian Pacific Islanders, indicated that the lack of quantitative data both hampered their planning and delivery of health care in their communities, and put them at a serious disadvantage in their attempts to compete for state and federal funding. Convincing cases were made at the hearings for periodical health surveys that could be used by specific racial and ethnic minorities in their communities.
Based on what the subcommittee learned from these hearings, the NCVHS recommends that HHS should, one, develop a long term data collection, analysis and dissemination plan to insure that the nation's system for monitoring the health status and health care of subgroups of specific racial and ethnic minorities, especially those concentrated in geographically distinct areas, is sufficient in quantity and quality; two, devise sampling frames for national health surveys that would increase sample sizes for racial and ethnic minority groups that would support appropriate analysis and information dissemination; three, conduct targeted surveys to collect detailed, timely and accurate data on specific subgroups of specific racial and ethnic minorities, especially those concentrated in geographically distinct areas.
These surveys should use methods similar to the large national surveys, so the resulting data can be compared with national data. Use of defined target surveys to complement and augment the large national surveys would in effect provide an integrated national data system for a more comprehensive assessment of the health status and health care delivery of the overall populations.
DR. STEINWACHS: Vickie, it says studies here, and you said surveys.
DR. MAYS: Oh, I'm sorry. Should be surveys.
DR. STEINWACHS: Surveys?
DR. MAYS: Yes, sorry. Four, develop methods and procedures to expand access to data while assuring confidentiality to enable monitoring the health status and health care delivery for racial and ethnic minorities. Should be a period at the end of that.
Five, collaborate with states, territories, tribal governments, private foundations and other stakeholders to develop methods, procedures and resources to accurately collect health data that insures that the diversity of the U.S. population is adequately represented.
As a specific example, states need financial and technical assistance to complete the development and adoption of electronic vital registration in a statistics system that will include the implementation of revised U.S. standard certificates of birth and death. Revising the system will insure that higher quality and more timely data are available for the most basic health events, birth and death.
There are many considerations for collection of high quality data on racial and ethnic minorities. In addition to statistical sampling issues, these include cultural proficiency, and in parens it says concepts, methods, outreach, selection and training of interviewers, adequacy and availability of translation, and insuring community involvement in outreach and translation of research into policy and practice. Support for methodological research is essential in order to determine the most effective way to meet these goals.
We recognize that financial resources are limited, but compelling evidence shows that specific racial and ethnic minority populations experience poor health and inadequate health care. Consequently, we urge the Department to request adequate funding to support the above recommendation.
These recommendations are consistent with those made in a recent General Accounting Office report to Congress. The NCVHS believes that these recommendations will make a significant contribution to the important HHS goal of eliminating racial and ethnic disparities in health, as well as disparities based on other factors.
Thank you for your consideration of these recommendations.
DR. COHN: Good letter. Comments, questions? I guess we got through all that yesterday, didn't we? Is there a motion?
MR. BLAIR: So move.
DR. LENGERICH: Second.
DR. COHN: You'll second it? Good. Any discussion? All in favor, say aye.
(Chorus of ayes.)
DR. COHN: Opposed? Abstentions? Okay.
DR. MAYS: Thank you very much. We have our second letter. This is the one on health plans. It should say at the top, draft, September 24, 2003, and it has italicized in the second paragraph, so you will know you are on the right one.
Dear Secretary Thompson. The National Committee on Vital and Health Statistics, NCVHS, commends your initiatives to eliminate racial and ethnic disparities in health care. Disparities in access to and delivery of health care to racial and ethnic minorities have been well documented by the research community as well as by federal agencies. The collection of adequate and comparable data for racial and ethnic populations is also well documented. Your initiatives confirm the need to collect information on the race and ethnicity of individuals in order to manage, monitor and evaluate programs to prevent disease and promote better health outcomes.
DR. GREENBERG: This sentence, the collection of adequate and comparable data, you mean the need for collection of adequate and comparable data?
DR. MAYS: Yes, it is the need for. It is the need for the collection of adequate and comparable data is also well documented.
DR. GREENBERG: Yes, that is what it said before.
DR. MAYS: Yes. One of the nation's important health goals is to eliminate racial and ethnic disparities in our health care system to insure that all Americans receive quality health care. We commend HHS for taking the lead in promoting the collection of racial and ethnic data in the private sector, such as when the Food and Drug Administration issued guidance for industry on the collection of racial and ethnicity data in clinical trials for FDA regulated products. This is an important first step towards obtaining accurate health related data.
Without the collection of standardized racial and ethnic data in health plans, progress towards achieving the national goal of eliminating racial and ethnic disparities cannot be monitored. Medical service provided administrative data are a critical source of information on the race and ethnicity of individuals. However, a uniform data collection infrastructure does not exist. Thus, health plans use a variety of strategies to collect data on race and ethnicity, e.g., administrative data, electronic medical records, enrollee surveys, federal and state enrollment files for Medicare and Medicaid beneficiaries and data linkages.
Most of these efforts have been limited to members representing small subsets of assorted health plans, e.g., new enrollees, patients with particular health conditions, or a random sample of enrollees. Through testimony gathered from private sector health plans, large employers and business coalitions, quality oversight organizations, measurement experts, state and federal health data agency and other interested stakeholders, the NCVHS quality work group has also identified significant data gaps.
The NCVHS recommends that HHS strongly encourage private sector health plans to collect accurate and complete racial and ethnic data in accordance with the revised OMB standard categories. To accomplish this, HHS should -- and here is a series of bullets -- promote racial and ethnic and primary language data collection and reporting by private health plans and provide information and expertise to assist in the accomplishment of this goal.
Inform insurers, health plans, employers, providers, entities and the general public that data collection reporting by race, ethnicity and primary language are legal and often required by law.
Raise awareness that data collection is needed to achieve Healthy People 2010 goals and to comply with Title 6 non-discrimination requirements.
Support research on the best practices for collection and reporting of data by race, ethnicity and primary language.
Facilitate the collection of racial and ethnic data using the Office of Management and Budget's revised standard categories and the collection of primary language and appropriate administrative transactions mandated under HIPAA.
To do so would increase health plans' capacity to provide data for identifying and correcting health disparities and health care delivery, meet e-gov health information standards that are part of the national health information infrastructure and the consolidated health informatics initiatives, study racial and ethnic differences in access to health care, health status and health care delivery, facilitate development of culturally appropriate outreach, prevention and intervention programs.
Thank you for your consideration of these recommendations.
DR. COHN: Marjorie?
DR. GREENBERG: I'm sorry to raise these. I wasn't able to be in both groups. Just one thing. Right before the bullets on the bottom of the first page, where it says, NCVHS recommends that HHS strongly encourage?
DR. MAYS: Yes.
DR. GREENBERG: It had said strongly encourage and provide support to.
DR. MAYS: Oh, yes.
DR. GREENBERG: If I recall, Dr. Lumpkin particularly wanted some additional language there.
DR. MAYS: No, I remember. Let me ask the committee. That may have gotten dropped. I don't think that there was a discussion against it. I think it may have been in the editing, it was dropped.
DR. GREENBERG: Had you decided to limit this to private sector health plans?
DR. MAYS: Well, that discussion came up. I'm going to let Don --
DR. STEINWACHS: I raised in the work group about that. There really are no public health plans that I am aware of. Medicare and Medicaid pay money to health plans, but those are private health plans.
So we got into this discussion, and Peggy echoed it too, that there really are private health plans, even though there may be public dollars going into many of these plans. Some of these plans may serve only public beneficiaries, but they are still private health plans.
DR. GREENBERG: Okay.
MS. BEREK: There are public health plans. New York City Hospital Corporation runs a health plan. I believe L.A. County runs a health plan. So there are in fact publicly run health plans. I don't know whether you have to change the language of the letter, but the fact is, there are places where local government in fact runs health plans.
DR. COHN: Shall we get rid of public or private and just say health plans?
DR. MAYS: No, why don't we say public and private? What we were trying to do was make sure that the public ones know that they are included.
DR. GREENBERG: They wouldn't if you said private.
MS. BEREK: I know the New York City HHC runs a huge health plan for Medicaid beneficiaries predominantly.
DR. COHN: Do we want to say public and private, or do we want to get rid of it and just say health plans?
DR. STEINWACHS: I find just health plans easier to deal with.
DR. COHN: Okay, great.
DR. MAYS: And we will put in, and provide support, too. I didn't see any objections to any of the members of the subcommittee.
DR. FYFFE: Kathleen Fyffe, staff to one of the committees. I really think you should include the words public and private health plans. Otherwise, the public health plans won't know that they are included. I think we need to be more specific about that. I say that after spending nine years with the health insurance industry.
DR. COHN: Vickie, it is your pleasure on this.
DR. MAYS: My bias was initially public and private.
DR. STEINWACHS: So you've got it back again, Vickie.
DR. COHN: You've got it back again.
DR. STEINWACHS: You have a strong support group out there.
DR. COHN: Okay, next issue. Steve?
DR. STEINDEL: Vickie, I'd like some explanation on the second bullet in the area, to do so would increase the health plans' capacity to meet E-gov health information standards. I'm not aware that we have enunciated any health information standards, either under E-gov or CHI in this area. And especially that applies to health plans.
I'm not saying that we shouldn't, but this is in a different section.
DR. MAYS: It was my understanding that in the E-gov that there were ones in the consolidated health informatics initiative.
DR. STEINDEL: But we are not requesting it with respect to health plans.
MS. BURWELL: Taking the broader view and looking at the eventual standardization of data, as I think everyone is working toward, and also looking at recommending data collection by the health plans at a minimum at the OMB category, that is why we put that sentence in there.
DR. COHN: Maybe it is, be consistent with.
DR. STEINDEL: Or, I am thinking about meet emerging health information standards that are developing as part of, or something like that, or be consistent with. The way it is worded now, it implies that they are already there.
DR. MAYS: I thought in terms of race and ethnicity, it is there.
DR. HOUSTON: Why don't we simply say support. The meaning says there is some mandatory criteria that you have to meet. Support says these standards are coming out that include race and ethnicity.
MS. BURWELL: Peggy unfortunately has left.
DR. COHN: I think consistent with is actually --
MS. BURWELL: It is just a little word.
DR. MAYS: How about consistent with E-gov health information standards?
DR. STEINDEL: I would say emerging health information standards, because E-gov is a very specific initiative in CHI. That is really the main thing.
DR. MAYS: You want E-gov. Consistent with emerging health information, and everything else is the same? If you are going to do emerging, you could leave it as meet emerging standards.
DR. STEINWACHS: Vickie, could you read it again?
DR. MAYS: Meet emerging health information standards that are part of the national health information infrastructure and the consolidated health informatics initiative.
DR. STEINDEL: It is health care, actually.
DR. MAYS: I'm sorry, health care needs to be in there.
DR. GREENBERG: Initiative, singular.
DR. COHN: Jim.
DR. SCANLON: First page, last paragraph, what did we have in mind when we recommended that HHS provide support to health plans?
DR. GREENBERG: I think the things that are listed here.
DR. MAYS: I was going to say, my sense is that the bullets are what we are asking them to do, the first set of bullets; promote, inform, raise, support and facilitate. Is that not enough?
DR. SCANLON: No, I thought there was something -- support usually means money.
DR. GREENBERG: Originally the word incentivize had been recommended, and that really sounds like money. So we changed it to support. I think it is the things that are provided here.
DR. HOUSTON: If you are concerned about the thought that there might be a dollar component to this, you could say HHS strongly encourages and supports, and then in parens, as outlined below.
DR. MAYS: Where are you?
DR. HOUSTON: Based on what John said.
DR. STEINDEL: Bottom of the first page.
DR. MAYS: And provide support.
DR. SCANLON: That way, it is clear that the support is actually the recommendations rather than something in addition to those recommendations.
DR. MAYS: Okay. Do you want me to read the sentence again?
DR. COHN: I think this is okay. Go ahead, why don't you read it.
DR. MAYS: The NCVHS recommends that HHS strongly encourage and provide support as outlined below to private sector health plans to --
DR. GREENBERG: To public and private.
DR. MAYS: To public and private, sorry, to public and private sector health plans to collect accurate and complete racial and ethnic data in accordance with the revised OMB standard categories. To accomplish this, HHS should, and then it is the bullets.
DR. COHN: I have one more wordsmithing. I have a wordsmithing in the second paragraph. I would suggest -- where it says, we commend HHS for taking the lead in promoting the collection of racial and ethnic data in the private sector, it should be, such as the issuance of the FDA guidance on. That is just wordsmithing. Other wordsmithing, other changes?
MR. LOCALIO: Vickie, I hate to bring this up at this late hour, but the second bullet on the top of the back page, on what is legal and often required by law, does this adequately cover the implications for pending statewide initiatives on the collection of data by race and ethnicity?
DR. MAYS: How many attorneys are in the room? I think the attorneys should try and answer this. I don't know. But I always thought that federal law tops state law. Our understanding in the state of California is that if it is a federal activity, that it will continue.
The problem would be in the area of vital statistics. Vital statistics are collected by the states on behalf of the federal government, or then given to the federal government. So if it is vital statistics, it actually would come under the state regulations.
DR. SCANLON: I don't think this letter can deal with that issue. I think you probably said it as well as you can. That is a whole other issue, what a state may want to do.
PARTICIPANT: I didn't hear what Jim said.
DR. SCANLON: I just thought an issue like that, the California referendum, is not something this letter should deal with, or particularly is intended to deal with it.
The FDA issuance, that wasn't a first step. Actually, HHS has issued guidances to health plans and others previously on collecting race and ethnicity data. But it is an important step, so I would just eliminate first.
DR. MAYS: Okay. Any other comments?
DR. COHN: Is there a motion to approve?
DR. STEINWACHS: So moved.
DR. COHN: Second?
DR. LENGERICH: Second.
DR. COHN: Any discussion, further comments? More wordsmithing? I'm disappointed. All in favor, say aye.
(Chorus of Ayes.)
DR. COHN: Opposed, nay? Abstentions? Okay, pass.
DR. MAYS: Thank you very much.
DR. COHN: Do you have any other --
DR. MAYS: Yes, we have, and I will try and make these quick.
We met this morning and reviewed a number of items that I want to share with the full committee, because some of these items actually involve presentations at the full committee.
We were talking in the subcommittee about the national childhood longitudinal survey that is going to be conducted by -- that is under discussion to be conducted by NICHD. Our subcommittee actually had a presentation by someone from that study.
This is a study which will be a 20-year longitudinal study of kids from at birth. I don't know what the N is going to be, but the speculation for the N is about 100,000. I think a lot of this has to do with money, but it is speculated to be about 100,000.
The subcommittee thought that it was important for us at this point to comment on this study, so we are in a position of recommending in terms of their approach to the study that it is one that would include a lot of the issues that we have focused on before, such as the collection of data on race and ethnicity, that they broaden the notion of looking at health disparities to insure that it is beyond just race and ethnicity. We also wanted to make sure that the way in which they collected the data will include sufficient numbers of racial and ethnic minorities so that there can be analysis.
They are currently under way in discussions, small studies, et cetera, to define what the methodology for the study will be. So rather than just sending a letter, we thought that the entire full committee might be interested in the study, because there will be issues of privacy and confidentiality, there will be a number of issues that we think the full committee would be interested in.
So it suggested that we might try and see if we can get a presentation for November. The Executive Subcommittee will have to determine if our schedule is open for that.
The other discussion we had was on the CDC futures initiative. CDC under the leadership of its new director, Dr. Gerberding, is doing strategic planning. Part of that strategic planning is asking not only its typical partners, but some of the broader partners to comment on strategic direction within CDC.
Again, we brought this up. When we brought it up, it was something that was thought that it is not just relevant for our subcommittee, but that it might be useful to have a presentation on a strategic plan and see if there were comments that the broader full committee might want to make to the strategic planning process.
So again, I think the way that we will proceed is to ask our esteemed chair to send a letter with an invitation to Dr. Gerberding to join us, and we will see whether that is November, March, June.
The third issue that we raised, and this really will probably be more in our subcommittee, that is, I recently attended a meeting of NHANES, where NHANES is beginning to look at for its next round of the NHANES survey what questions will be in or out. One section of questions that there is a consideration for dropping is that on mental health.
It led us to have a much broader discussion relative to where we are on focusing on mental health statistics. Mental health statistics used to actually be a specific subcommittee within NCVHS, and it has been folded at some point in time into the Subcommittee on Populations.
As we thought about it, there really is this issue of thinking a little bit more about health statistics as including mental health statistics, making sure that mental health statistics are included in some of the large national surveys.
So we are probably going to pick this issue back up again. We are going to start with NHANES, in looking at what recommendations we might want to make to NHANES to maintain mental health statistics, because we think it is very important to physical health that the mental health side also be included. So we have a little subgroup that will follow up on that.
Our last activity is, part of the work that we did on the targeted surveys really led us into the area of privacy and confidentiality. The problem with some of the data analysis when there is a small group of individuals is that you may have data collected, but you have difficulty in being able to analyze the data or in some instances get access to the data unless you come here to the data site.
Part of what we want to do is to begin to look more closely at what the policies and procedures are for making data more available, but still attending to needs for confidentiality and privacy. We want to look at what some of the policies are at NCHS and NIH, and to see whether or not there are any ways that we can problem solve for researchers and community groups to have greater access to data, but at the same time insuring that there is the protection of privacy and confidentiality.
For example, one of the things that we will be talking with Jennifer Manns about is pursuing again whether or not NCHS might be able to share the data centers that are maintained by the Census. That would provide greater access of individuals to the data. So we are going to explore these issues, but again, they will be in the context of our subcommittee.
We have also asked Mark if he will work with us. He has a full plate, and we just made it a little fuller. The thinking is that we might have a one-day hearing on these issues, and bring in people from CDC, NIH and some of the concerned community groups, particularly in terms of CDC's work in the area of community-based participatory research.
We have a hearing on November 13-14 at APHA, which will focus on the collection of data in race and ethnicity, particularly in Asian, Native Hawaiians and other Pacific Islander populations.
PARTICIPANT: When?
DR. MAYS: November 13 and 14 in San Francisco.
DR. STEINWACHS: We wanted to have it in Hawaii, but we just couldn't get the support for that.
DR. MAYS: Now, if you want to make a motion, I'm sure one of us will be happy to second it.
DR. COHN: Jim.
DR. SCANLON: Vickie, there has been a new development as well in terms of statistical confidentiality. That big E-government act that Congress passed just about a year ago includes a provision that authorizes agencies to -- it gives them new authority for statistical confidentiality. It hasn't really been well thought out yet, but it would basically -- some of the agencies that don't have such protection now would now have the authority to protect the information, with fairly sizable fines for violation, $250,000, for example, for a violation of the provisions in this.
It is like what the Census Bureau already has. But OMB is looking at how we might want to interpret it. They are looking at ways that we could -- and we are looking at ways that we could again open up access to some of the research and statistical holdings without breaching any confidentiality. So you might want to include that in the discussion as well. We may want to think about it for the full committee meeting in November, have someone brief the group.
DR. MAYS: Gail mentioned that, so I think it is one of the things that we definitely wanted to learn more about.
DR. COHN: Anything else?
DR. MAYS: No.
DR. GREENBERG: Again, I have to leave, but this is helpful in planning our next agenda. These two letters obviously come out the broader hearings that you all held. I know you are working on a broader report from those hearings, and this hearing you are going to have in November is going to feed into that report also? Or it could be a separate report.
I just wanted to know whether we should be expecting a report from the committee in November or not until March.
DR. MAYS: I think we have to have a conference call with our work group, I am hoping. But I want to make sure we can meet the commitment. Before the Executive Subcommittee, have a discussion about what is on the agenda. I think that we will have had a conference call to determine that.
DR. GREENBERG: Okay. We actually had not planned -- this has come up now a few times -- a call of the Executive Subcommittee to plan the November agenda, but maybe we need to schedule one. It sounds like it.
DR. COHN: Yes. I announced one. I guess I presumed that there was going to be one.
DR. GREENBERG: I don't think so.
DR. COHN: Without any particular knowledge.
DR. GREENBERG: We will schedule one.
DR. COHN: Okay. Well, I'm glad my announcement is correct.
DR. GREENBERG: Yes.
DR. STEINWACHS: Simon is never wrong.
DR. COHN: Bob?
MR. HUNGATE: The Quality Work Group would like to thank the full committee for your active participation yesterday. We felt that we finally got the content on the table, and have -- an outgrowth of that meeting is that we now have a process to get some fuller communication and discussion around a pretty weighty and lengthy list of recommendations, which will evolve to other labels in some cases, but in any event evolve.
To that end, I want to alert you all that around about the 22nd of October, you are going to get a survey, and be asked to complete it by -- excuse me, the 15th of October you will receive a survey and be asked to complete it by the 22nd. We have no penalties in this.
DR. STEINWACHS: Don't we have public humiliation? If we don't complete it, we announce it to the world?
DR. GREENBERG: The names of those who didn't respond will be read aloud.
MR. HUNGATE: We all talk about a national health information infrastructure, and the great digital world that it is going to live in. I am kind of an analog guy on surveys. The requirement is that you put an X on a line, between the left and the right, and the left and the right points are labelled.
We are experimenting a little bit with the technology to see whether we can do the recapping electronically to replicate your X's on the lines, so we get a scattergram of the distribution. That will be done on the axes of importance, timeliness and doability as the three characteristics that we agreed to work on. Any further inputs are welcome. I want to especially also for the committee thank Kepa for the suggestion that Kathy go to X-12. He has gotten 30 minutes.
DR. ZUBELDIA: It took a lot of e-mail back and forth, but she is finally in for about 30 minutes, unless there are some voting items for Monday that have been pushed to Tuesday, in which case her time will be squeezed to about ten minutes. But in principle she is in for 30 minutes on Tuesday morning.
DR. GREENBERG: And you have been back in touch with Kathy?
DR. ZUBELDIA: Yes, I sent her an e-mail, and send both Vickie and Bob a copy of the e-mail, saying this is what it is. Kathy said it was okay for either Monday or Tuesday. The X-12 has been put in the agenda for Tuesday.
MR. HUNGATE: The specific intent is to present the suggestions and get feedback on how that sits.
DR. ZUBELDIA: But the business case, --
MR. HUNGATE: The business case, we will hear what reaction comes back.
DR. GREENBERG: We hope that we can have 30 minutes.
DR. ZUBELDIA: I hope that 30 minutes will be okay.
MR. HUNGATE: It is data taking.
DR. GREENBERG: It will require -- and we appreciate her willingness -- it will require her to go out from Boston to San Diego.
DR. ZUBELDIA: So there are no surprises, I have also volunteered Michelle to supplement with answering any additional questions after 30 minutes.
DR. STEINWACHS: Kepa, can the rest of us volunteer for the trip to San Diego, too?
MR. HUNGATE: I am a little uncertain how much time to ask for discussion at the next meeting, because I don't have a good sense of how much time it will take. Each time we have had a discussion so far of 45 minutes as a full committee, and it has been inadequate.
So I don't know what the other competing items will be, but I suspect it would be helpful for us to have a work group meet the afternoon before and have our discussion time the second day.
DR. COHN: If I can make a suggestion, and maybe Don has one also, but obviously you are going to be getting responses from all of us. I think the question is that there are a whole bunch of recommendations, and you may want to chunk them up, rather than have us try to somehow discuss 35 pages of a report all at once. So you might look for the more obvious items first.
MR. HUNGATE: We will do some prioritizing based on the survey, and you will get the full data of the survey hopefully in the book in preparation for the next meeting, so that is the context in which we would expect to go.
DR. COHN: Are our comments anonymatized?
MR. HUNGATE: All comments are for attribution.
DR. COHN: That is what I figured. Don?
DR. STEINWACHS: I agree with your points, Simon.
DR. COHN: Vickie.
DR. MAYS: One of the things that Kathy is doing in preparation for the meeting is actually making a business case for each of those areas. So you might find that there is going to be a change in terms of how much they are bringing forth, based on the combination of Kathy doing that and then the ratings of things.
I think what she is really trying to do is get some feedback on doability and things like that from those groups. So it might be that there is less, it might be there is more.
MR. HUNGATE: That's it.
DR. COHN: That's it, okay. Thank you. We will look forward to both getting the survey and the response in November.
Now we need to move back to the NHII work group. There is a letter in front of you. Let me just read it, go paragraph by paragraph.
Dear Secretary Thompson. The NCVHS commends your dedicated leadership to enhance the nation's health care delivery system to information technology. Your vision amply emphasizes the need for a comprehensive NHII to assure quality health care to all Americans.
Much progress has been made through initiatives led by your Department, such as the consolidated health informatics initiative, the licensing agreement with the College of American Pathologists for SNOMED, the recently concluded NHII 2003 conference, and the appointment of a senior advisor to the NHII.
Changes; I think it is health care informatics initiative. Other than that?
MR. BLAIR: Do you want to say SNOMED-CT instead of just SNOMED there?
DR. COHN: Thank you, SNOMED-CT. Thank you.
PARTICIPANT: It also looks like CAP. You don't need the acronym CAP there, because it is not used anywhere else.
DR. COHN: Thank you, good point. Other suggested changes for the first paragraph?
PARTICIPANT: In the first sentence, at the very end you say through information technology, shouldn't it be through the application of information technology?
DR. COHN: i'm fine with that.
PARTICIPANT: We couldn't hear what the suggestion was.
DR. COHN: The suggestion was, through the application of information technology, rather than through information technology in the first sentence. Other comments or suggestions in the first paragraph?
Second paragraph. In a hearing before the NCVHS NHII work group on January 27, we heard about Internet technology from several expert testifiers in the private and public health care sectors. We were told in the present Internet, a key technical component of the NHII will reach capacity within a decade. We also learned about several federal research projects under way that are vital to the development of a coordinated, comprehensive NHII.
One such interagency program is the federal networking an information technology, research and development program, a two billion dollar federal program. The HHS participants in this program include NIH and AHRQ. Other agency participants include the DoD, Department of Energy and the National Science Foundation. The program is designed to develop and deploy vital networking technologies in the next generation Internet. These technologies can enable health care applications such as medical consultation at a distance, surgical intervention and simulation in -- I'm sorry, you can tell I haven't read this before -- surgical intervention and simulation and the facilitation of an essential collaboration among physicians and researchers, as well as the migration of care into the home. I think that sentence needs a little bit of work, because I can barely say it. Well, surgical intervention and simulation, and the facilitation -- what?
MR. BLAIR: It is stimulation.
DR. COHN: That sounds like it needs a little bit of wordsmithing, or at least tightening down.
DR. STEINWACHS: Simon, just for the education of some of us, surgical intervention and simulation, is this surgical intervention at a distance, remotely? Is that the idea? I don't understand what surgical simulation is.
DR. COHN: Well, unfortunately Ted Shortliffe isn't here, and John isn't here, so I can't answer that question, what exactly is meant by this. Mary Jo Deering, why don't you come to the table and help us with this sentence?
DR. DEERING: I wasn't the drafter of this, but yes, you are entirely right, that it is -- the intervention refers to remote surgery.
DR. STEINWACHS: Do you think we can say remote surgery or remote surgical intervention or something like that?
DR. DEERING: That might clarify it.
DR. STEINWACHS: It would be nice if a lay reader could walk away with --
DR. ROTHSTEIN: You could also make medical consultation at a distance, telemedicine.
DR. DEERING: I think the issue with telemedicine is that it doesn't require the NGI, that they are doing it with telephone lines. I think what they would like to emphasize here -- I agree with you, but I think the NGI per se is going to facilitate these more advanced activities that are currently possible.
DR. COHN: I'm going to suggest in this sentence that maybe we defer -- assuming we can all reach agreement on the concept, that this sentence needs to be reworked. Assuming that we pass it, it can revised by the Executive Subcommittee and all that. I am sitting here wondering whether John may have meant certain things. It is not very clear. I think we are guessing on what the right terminology is.
DR. STEINWACHS: Some of us just want to make it our own. Simon, just one other thing on the paragraph, just to strengthen something, it is the second sentence, where you talk about, will reach capacity in a decade, how about, will reach capacity constraints within a decade? Sometimes reaching capacity is a positive.
DR. COHN: Okay. Other suggestions here?
DR. HOUSTON: Hearing about Internet technology, Internet technology in and of itself is old hat. Should we say emerging Internet technologies or something? This is in the very first sentence.
DR. GREENBERG: It sounds like we first heard about Internet technology on January 27.
DR. HOUSTON: Exactly. I'm just thinking about whether it be emerging Internet technologies or emerging --
DR. GREENBERG: Advanced?
DR. HOUSTON: Advanced Internet technologies might be a good one.
DR. COHN: Advanced? Okay, thank you.
DR. DEERING: I think any of those would probably do.
DR. COHN: Yes. Vickie.
DR. MAYS: I just want to ask a question. In the second paragraph, fourth sentence, we also learned about several federal research projects under way, blah, blah, blah. Then as you go through the list of everything, are all these really research projects? I have some awareness of things like Internet II, but they are not all research projects.
DR. HOUSTON: They are R&D.
DR. MAYS: They are all research projects?
DR. HOUSTON: Research and development.
DR. MAYS: Maybe we should call it that then, research and development.
DR. COHN: Research and development projects? Okay, why don't we do that? Thank you. Other comments or suggestions? With some surgical technique on the last sentence, that is a long sentence; we will work on that.
The final paragraph is, To insure that the requirements of the health system are adequately represented in this process, the NCVHS recommends the Department increase the participation of HHS agencies in federal interagency IT research and development initiatives that are working to advance an improved national networking information infrastructure.
Such approaches might be productive -- several, thank you, several approaches might be productive, such as establishing a new coordinating officer or designating an existing agency to develop and oversee a coordinating plan.
Regardless of the approach HHS chooses, the committee recommends that you personally indicate your support for this participation in the strongest terms. As other federal agencies have observed, we anticipate this activity will result in optimization of research and development efforts to meet the needs of the NHII and possible system operation savings.
Yes.
DR. HOUSTON: Halfway down through the paragraph, you say several approaches might be productive, such as establishing a new coordinating officer. Wouldn't that either be establishing a new coordinating office or appointing an officer?
DR. COHN: Or naming?
DR. HOUSTON: Naming. Office would seem to be implied there, or designating an existing agency, either an office or an agency. I'm not sure what we really meant there.
DR. DEERING: I think at one point there were several things in there. Initially, the committee decided that it did not want to be proscriptive. I think this was Jim's suggestion. On the other hand, we wanted to indicate a couple of possibilities indicated by the next sentence, of whatever approach we take.
So I don't know that we are necessarily recommending any of those --
DR. HOUSTON: I wasn't sure whether it was office or officer or what.
DR. SCANLON: I think this was meant to be illustrative. I think we are not creating a new office.
DR. GREENBERG: How about focal point? It could be an office, it could be a person.
DR. SCANLON: You want to leave some flexibility. There were a number of specific suggestions earlier, and you can go through each one of them and argue yes or no. That is not really what you want the letter to do. You want the Secretary to use his discretion.
DR. COHN: Don.
DR. STEINWACHS: Simon, in paragraph two, it seems to me you raise the issue that the Internet is going to be up against capacity constraints, or it is going to be potentially in trouble unless things change. Is paragraph three how we are going to make sure the Internet doesn't run out of capacity? For some reason, paragraph three didn't quite grab me as saying this is the answer to concerns you raise, but the things we can do with an expanding Internet, and continue to expand it.
DR. DEERING: I think what happened is that we deleted two paragraphs from the prior letter. We thought that we had perhaps handled it by currently, the first line of the third paragraph, we inserted the words, in this process, adequately represented in this process.
If in fact your interpretation is the one the paragraph gives, then that is incorrect. The whole point of the third paragraph as it is now remaining is to say that HHS needs to be at the table in all of this R&D activity. Not simply in the expansion of Internet capacity, but all of these R&D initiatives, of which NGI is the current foundation.
So if it doesn't say that, if it doesn't come across like that, then we need to go back to it.
DR. COHN: To do a little more wordsmithing.
DR. DEERING: Yes, we need to do that a little bit more.
DR. COHN: I think the other issue which I think John Paul brought up, several approached might be productive, such as establish a new coordinating office, and get rid of the R at the end there.
DR. GREENBERG: I was suggesting focal point, maybe.
DR. COHN: A new coordinating focal point?
MR. BLAIR: Or just a focal point.
DR. GREENBERG: Not new.
DR. COHN: I guess I am feeling a little shy about trying to too extensively wordsmith this at the full committee, even though we did that a lot yesterday afternoon.
DR. STEINWACHS: Some of us remember that.
DR. COHN: Maybe that is why I am making the suggestion. I have already indicated that at least one area needs to go back and be revised. To me, the intent of this letter is relatively obvious, and I guess I would wonder whether anybody would have any objection to what we are talking about, which is increased participation of the HHS agencies in this process. I'm wondering if we should pass it with the idea that it would be wordsmithed and referred to the Executive Committee for final approval.
Gene, comment on that?
DR. LENGERICH: Yes, I do have a comment on that, and a question. The second to last sentence there, one of the recommendations is that you personally indicate your support for this initiative. I guess I am unclear about what personally is and implies, and what we are expecting Secretary Thompson to do in that sense.
DR. COHN: This is, regardless of the approach HHS chooses, the committee recommends that you personally indicate your support for this participation in the strongest terms. You are bringing up the question whether it needs to be personally?
DR. LENGERICH: Yes. I'm trying to think how that would be manifest. It could be very weakly manifest by him saying, I support this, and that fulfills it. In another sense, his personal support is extremely -- may carry an extreme amount of weight. I think the lasting sense of this recommendation is that the Secretary's office supports it, not him personally supporting it.
DR. COHN: Mary Jo.
DR. DEERING: Your point is that personally doesn't really add anything. We agree that support for his office is essential. I was going to say that the Secretary has personally made a phenomenal impact on the field, and it is a very personal impact, so that may be what is intended there. So I think the issue is whether he personally does add anything here or not. I'm open to your suggestion.
MS. BEREK: As an employee of the agency, when the Secretary personally takes something on, it makes a huge difference. So I think leaving personally in is not a bad thing. CMS has been trying to get contracting reform for 12 years, and the Secretary arrived and said, the way you operate is idiotic. You have to have contracting reform. He has put an enormous personal effort in, which has changed the whole approach both inside CMS and action in Congress.
So I think to say personally is not a bad thing. It is different just from his office showing leadership; it is him continuing to walk around and say it is important which makes a very big difference.
DR. COHN: I think we can probably leave this in. I don't think it damages the document. Donald.
DR. STEINWACHS: To help my understanding, the leadoff sentence in the third paragraph that says, to insure that the requirements of the health system are adequately represented in this process, if you asked me to try to interpret that sentence, I wouldn't be quite sure what we are asking, the requirements of the health system. The protection of the public's health? The health system many people view as largely private, and we are asking the Department to -- are there some other words, or is there another way for me to say that, that would help me to understand what you -- or are you leading off and saying that this is needed?
DR. DEERING: It could be the requirements of health care. On the other hand, that leaves out public health. It could be the health sector.
DR. COHN: Maybe it is the health sector.
DR. COHN: Thank you. Other comments about this? Mary Jo.
DR. DEERING: Just so that we can possibly deal with the third paragraph in ways that may retain the intent, but permit us to perhaps move forward, it seems to me that one could in the spirit of minimalism that marked our work with the previous draft strike out the sentence entirely that says several approaches might be productive, and edit the introductory clause of the next sentence that says something to the effect that, regardless of how this participation is to be achieved, or something that conveys that notion.
We all acknowledge that at this point, the prior sentence was only to be illustrative. The sentence seems to be more confusing than helpful. Perhaps it could be acceptable to Ted, who cares a lot about it especially.
DR. COHN: So read that follow-on sentence.
DR. DEERING: it would now say, regardless -- the first sentence would call for increased participation of HHS agencies in the da, da, da, regardless of how this increased participation is accomplished, to be achieved.
DR. COHN: Are others comfortable with that?
DR. GREENBERG: And delete the previous sentence?
DR. DEERING: And delete several approaches, the entire sentence. I do believe Ted would want to review this and have some comments. This would not just go back to the Executive Committee probably.
DR. COHN: Sure. We have a couple of choices here. One is that we can defer this and let Ted Shortliffe and John and the NHII work group re-review this one and further edit it. That is one option. Another would be to approve it, refer it to the executive committee, and have John go through internal Executive Committee processes, which might include review by other committee members, with the idea that there need to be wordsmithing modifications, and not change the meaning of the recommendations, but that we would defer to the Executive Committee for those final wordsmithing changes. What is the desire of the committee?
DR. SCANLON: Let me just throw in one last plug.
DR. COHN: Please.
DR. SCANLON: You now have me on that first sentence of the third paragraph. I like the health sector, but maybe, to insure that the health sector and the public health interests are adequately represented in the process. Maybe we could bring in public health interests, too. Someone else raised that, and I thought that would strengthen why we want HHS agencies.
DR. COHN: Okay, great. It sounds like the second approach is the one that is of interest to the committee. Do we have a motion then to approve with further wordsmithing by the Executive Committee?
DR. SCANLON: So moved.
DR. MAYS: Second.
DR. COHN: Any further discussion? All in favor, aye.
(Chorus of Ayes.)
DR. COHN: Any negatives? Any abstentions? Okay, passed.
I guess our final work is about future agendas. Marjorie, do you have any comments about the November agenda? I guess I will lead off. It is very obvious that there will be further discussions of ICD-10.
I do want to comment, just for those who are part of the subcommittee as well as sitting in on the meeting, that the discussions that occurred at the subcommittee were primarily brainstorming. If you think about it, we are moving from the view of the types of things that we might recommend more to the how and the when and how we can optimize whatever benefits might occur with a transition, as well as minimizing costs. I think the views and thoughts were very introductory related to that.
Clearly, between now and October we will be putting together -- asking people to testify further on these issues, as well as cost of impact of such a transition. We will also be dusting off some of the older letters that we have drafted, and see if we can come to the subcommittee with at least a skeleton of the types of things that might be appropriate for the full committee.
I guess I am cautiously optimistic, underlying cautiously optimistic, that we will have a letter for the full committee in November, with the idea that we can discuss it. Based on what we see between now and then, there will need to be counter discussion. There may be a need for additional testifiers based on what we hear.
So anyway, that will be at least one major item.
DR. GREENBERG: You're saying there may be additional testimony as well?
DR. COHN: I can't rule that out. It is hard to know at this moment. We are going to have to think about that one a little bit. It certainly would not be beyond my imagination if for example CMS might want to come back and testify and describe what they have come to understand over the last while, even though the subcommittee will hear much of the same thing.
DR. GREENBERG: We certainly have that on the agenda as an item and possible action item. Is anything else expected from the NHII at the --
DR. DEERING: I don't believe so. One of the reasons that we are in a little bit of a hold pattern is a very good reason, namely that the Markle Foundation is perhaps going to turn its attention to a lot of the issues that we were --
DR. COHN: You need to get closer.
DR. DEERING: The reason that we were a little bit on hold is because of a very good development, namely, that the Markle Foundation's Connecting for Health initiative may be turning its attention quite substantively to some of the very issues that we thought we needed to pursue.
They have two meetings coming up, one at the steering committee and another national meeting coming up in the month of October, actually next Monday and then in October. So we will know further what they are going to be accomplishing. There are no action items.
DR. COHN: I should comment also, we are expecting a PMRI report as an action item. Also, I'm sure, another one of our letters with attachments from CHI that may even be thicker than the one that you saw today. So I think there is the hope there.
DR. GREENBERG: So possible action items, Populations has the possibility of a report.
DR. MAYS: Yes. Oh, you just want action items?
DR. GREENBERG: Yes.
DR. MAYS: The possibility of a letter and the possibility of a report.
DR. GREENBERG: A letter?
DR. MAYS: Yes. The letter would be the national childhood longitudinal survey. It could turn out that this is the window of opportunity that we talked about.
DR. GREENBERG: And the possibility of a report?
DR. MAYS: Yes.
DR. GREENBERG: Those are the action items. The privacy action item isn't until March.
As for presentations, I think we agreed on the possibility of a few hours for discussion of the quality recommendations. I know that --
DR. STEINWACHS: It is beginning to sound better, up to a few hours now, Bob.
MR. HUNGATE: I think a limit of two would be --
DR. GREENBERG: But probably more than 45 minutes?
MR. HUNGATE: Yes, I think if we can't get the points covered in two hours, we're probably in trouble.
DR. GREENBERG: I wasn't thinking any more than two. We had asked Dr. Sondik to report on a workshop that was held on summary health measures, which is an area that the committee has been following, for this meeting. He wasn't available for this meeting, so we scheduled him for November. I think he also annually makes a report to the committee on NCHS projects or activities.
As you know, the Board of Scientific Counselors is meeting on October 10, and hopefully Dr. Mays will be there as the NCHS liaison, so this would also be an opportunity for him to report back on that first meeting of the Board of Scientific Counselors, and discuss further with the committee how it will -- now that the Board has been established and will have had its first meeting held, will interact with the committee.
DR. COHN: As the acting chair, I do want to thank Dr. Mays for being willing to take on that additional assignment. No further comment.
DR. GREENBERG: We talked about international updates, but I don't know if that is a high priority at this point.
Dr. Mays mentioned the possibility of inviting Dr. Gerberding to talk about the CDC's future initiatives or strategic planning process, and how the committee might feed into that. I guess we will need to decide in that Executive Subcommittee conference call whether that is a priority for November, so that we can get a letter to her.
DR. COHN: There is also the year-end report.
DR. GREENBERG: I wondered about the HIPAA report.
DR. SCANLON: We wanted to include the October 16 experience.
DR. GREENBERG: This is the 2002-2003, the combined report?
DR. SCANLON: (Comments off mike.)
DR. GREENBERG: There might at least be an outline for the November meeting? No.
DR. SCANLON: There is a lot of new material in it. Let's think about that.
DR. GREENBERG: Well, it is a question mark there, as to whether there be any discussion of that. What about the populations presentation or session that was discussed at the Executive Subcommittee meeting after the June meeting, in which Dr. Starfield and Dr. Friedman were going to be invited back to address issues related to how the 21st century for health statistics, and particularly the model of influences on population health might be addressed in the different works of the subcommittees?
DR. MAYS: Dr. Starfield I think can't do November. She had a talk, she thought it might or might not happen, so I wanted to know for sure whether we thought we could do November. Then I need from Jim the private sector person.
So I think that if we get really booked up, we could hold it over to March.
DR. GREENBERG: Okay.
DR. MAYS: One more. That was, we had talked about whether or not you wanted at the full committee somebody from the national childhood longitudinal survey, and that that was a possibility for November.
DR. GREENBERG: Right, that was a possibility. Is there anything else that I don't have on here that any of the subcommittees want to take forward to the full committee agenda or presentations or discussions? So I guess we will draft a tentative agenda and then circulate it to the Executive Subcommittee for a conference call.
DR. COHN: Great, okay. I think we have a full agenda, it sounds like. Any other business from the -- no?
DR. GREENBERG: You all probably see that we have published the 2000-2002 NCHS report.
DR. STEINWACHS: And how can you do a 2002-2003? Unless it would be a 2003 report.
DR. GREENBERG: No, that is a different report.
DR. STEINWACHS: Oh, I see.
DR. GREENBERG: This is the report on the overall committee. Then there is a report every year to Congress on HIPAA.
DR. STEINWACHS: I see, I'm sorry.
DR. GREENBERG: So that one is referenced in here. This used to be an annual report, too, particularly since we have to do the HIPAA annual report. We started doing this as more of a multi-year report. But I wanted to particularly thank Debbie Jackson and of course Susan Canaan, our writer, for their excellent work on this.
DR. STEINWACHS: Hear, hear.
DR. GREENBERG: So I just wanted to commend it to you.
DR. COHN: Marjorie, thank you. I just wanted to take a moment to thank our staff; without them we would not be able to have meetings such as this.
With that, the meeting is adjourned.
(Whereupon, the meeting was adjourned at 2:47 p.m.)