Westin Hotel O’Hare
Rosemont, Illinois
The Executive Subcommittee of the National Committee on Vital and Health Statistics was convened August 14, 2001 at the Westin Hotel O’Hare in Rosemont, Illinois. The meeting was open to the public. Present:
The Executive Subcommittee met in Rosemont, Illinois, for a full day retreat on August 14, 2001. The purposes of the meeting were to review the Committee’s work and work plans, to revisit the issues identified at the 2000 retreat, and to assess progress toward the goals set by the Subcommittee at that time.
Some major topics and themes of the discussion were as follows:
Dr. Lumpkin welcomed the group to the Chicago area and reviewed the day’s agenda. He noted that in August 2000, the Executive Subcommittee had spent much of its retreat in Cambridge, MA, looking at the role of the Committee “post-HIPAA.” It identified two major goals:
1) to evaluate and adjust the alignment of NCVHS priorities with the information strategy and direction of the Department; and
2) to re-establish the foundation of the Committee’s work in population health.
In September, 2000, the full Committee approved the following NCVHS mission statement (a slight modification of the one devised by the Executive Subcommittee):
The mission of the National Committee on Vital and Health Statistics is to advise on shaping a national information strategy for improving the population’s health.
The purposes of the present meeting are to review the Committee’s work and work plans and to revisit the issues identified at the previous retreat, especially progress toward the two major goals.
The group began by assessing the impact of HIPAA on the Committee’s traditional population health focus, which Dr. Starfield defined as “covering the whole population.” They agreed that nothing in HIPAA, and nothing about data standards, is incompatible with a population approach. NCVHS was pulled away from traditional activities not because the approaches were incompatible but because its limited member and staff resources were occupied with carrying out the tasks mandated by HIPAA. The population health activities that had been pursued by several Subcommittees had to be consolidated into the workplan of a single one, which then felt the brunt of the shift in priorities and the reduction of personnel for population issues.
Despite these challenges, Mr. Scanlon and Ms. Greenberg affirmed that it was a good decision to have NCVHS serve as the HHS advisory body on HIPAA, because a separate advisory committee convened only for that purpose would probably have lacked the population focus altogether. With NCVHS, that focus has informed the Committee’s work on HIPAA, even as the broad set of responsibilities has sometimes produced tensions and overload.
Dr. Cohn called attention to the schematic developed in 1996 by Dr. Iezzoni and Ms. Coltin, which places the work on data, standards, and statistics in a population health perspective. Dr. Starfield observed that the impact of HIPAA was to pull the Committee away from thinking about what should be done, and to thinking about the details of how it should be done. This has taken energy away from expanding the vision of what should be done.
The discussion turned to the need to integrate all these components, to ensure that data and standards are useful for taking care of the entire population. Accomplishing this requires the presence of individuals who understand and value both the intricacies of standards and broad population health and health statistics issues. NCVHS needs members with these attributes, and HHS needs them in its staff, as do the states. Ms. Greenberg observed that NCVHS leadership is needed in this area, as part of its work on the NHII. Mr. Scanlon identified three perspectives or areas that need to be bridged: 1) standards, security and the NHII; 2) privacy and confidentiality; and 3) population health. He stressed that HIPAA (including the privacy regulations) should be seen as “a platform for the NHII” ¾ a fact that isn’t always understood. Now that this platform is somewhat established, the nation is poised to do more in the population area.
Taking up the question of how the Committee can exercise leadership in building these bridges, Dr. Mays suggested starting a dialogue with professional organizations, with the goal of getting them involved in such an effort. This might be done by inviting key people to a meeting for a discussion of the issues.
Dr. Lumpkin observed that the Committee is returning to a mode of operation that characterized its early years, when it worked with complementary expert panels. It does this now with the SDOs, and is considering doing it on quality issues. He proposed that the Committee’s most important role may be one of integrating what is happening in standards and in other data-related arenas and seeing where the cross-cutting issues are and where connections are needed. Dr. Cohn agreed, but noted that the Committee itself does not always understand how everything integrates, because members get occupied “looking at the parts.” Dr. Starfield identified overarching themes with respect to information systems: we need information on the average health of the population, and we need information on distributions of the health of the population.
Dr. Deering pointed out that the forthcoming NHII report will emphasize cross-cutting and integrating themes. The report asks HHS to move forward energetically in coordinating the collaborative development of the NHII. This implies a role for NCVHS in supporting the Department’s leadership. The Committee has the opportunity, as one of its priorities for the coming year, to help advance the NHII agenda.
It was suggested that the language around standards be reframed to stress their role in enabling people to do what they want to do, rather than in requiring certain actions. An emphasis on requirements can generate resistance, as has happened in relation to functional status coding and the unique identifier for individuals. The “enabling” perspective should be part of the NHII report. As an example, Ms. Greenberg cited the health care service data reporting guide being developed by the Public Health Data Standards Consortium. On another issue of semantics and perception, Dr. Cohn questioned whether the name “NHII” was optimal, given that integration is a major thrust of the initiative.
Dr. Lumpkin suggested that the Committee consider integration issues at a future meeting, along with the possibility of establishing a research agenda. He and Dr. Mays identified areas of possible research related to race/ethnicity data and health disparities. There are mechanisms through which NCVHS could seed research projects. Mr. Scanlon suggested developing these with an eye to the Secretary’s priorities (which he outlined later in the meeting). Mr. Rothstein reported that he is on an NIH committee looking at race/ethnicity. Dr. Lumpkin reported that he made a presentation at the American Statistical Association on NCVHS and minority health statistics. He will send his powerpoint presentation to staff.
The focus here is the need to build a cadre of people who do population health work and also know and appreciate the standards development process. The issue is not so much enlarging the overall workforce as instilling skills and competencies in the existing workforce through continuing education.
The group looked at both general issues and possible specific approaches. It was suggested that effective models for such an effort need to be identified, and that a small group of knowledgeable people try to define what needs to happen. NCVHS might ask each subcommittee and workgroup to look at work force issues with respect to its focal area; or the full Committee might discuss it. Specific tactics that were mentioned included fellowships, dissertation grants, getting onto the agendas of agencies that have money for training (e.g., NLM, AHRQ, CDC), and initiating a dialogue about this with professional associations, including APHA. CDC’s informatics fellowships and commissioning a National Academy of Science analysis were also mentioned.
Dr. Lumpkin noted that the Institute of Medicine is empanelling a group on the public health work force, and if the Committee can develop some recommendations, it might have an impact on the IOM recommendations. He proposed a hearing in the short run to develop recommendations for the Secretary, with the possibility of taking on this issue in another year or so when some NCVHS work groups have been retired. Mr. Scanlon noted that the two NCVHS vision projects provide a context for looking at these issues.
Dr. Lumpkin noted that although in its early days NCVHS worked a great deal on international projects, notably the ICD, it has not done so lately. Ms. Greenberg agreed, and stated that she regards the international dimension as critical. Regarding current activity on international standards, Dr. Cohn said he supported having NCVHS work in this area, but he also urged that it think carefully about its approach and desired impact. Dr. Friedman observed that we can learn from what is happening internationally. Mr. Scanlon commented that HHS is being drawn increasingly into international activities, and he suggested that the Department brief the Committee on current activities. Dr. Friedman endorsed the idea of “structural and process presentations” to NCVHS, for example by Canadians. On the question of whether the Committee’s role is to be involved in international approaches or to advise the Department on its involvement, members felt that the answer would depend on specific circumstances. Dr. Mays noted what could be learned from Canada’s work on inequality. Dr. Starfield noted the basic differences in the health systems of the U.S. and the countries from which it might learn the most, making it necessary to “broaden our thinking” in order to take advantage of their example.
Summarizing the discussion, Dr. Lumpkin suggested that subcommittees and workgroups continue to include an “international scan” as they do their work, and that a member of the Health Systems Working Group of the Data Council be asked to brief the Committee on the international landscape and relevant HHS activities.
Ms. Greenberg reviewed the status of the “substantive themes” identified at the previous year’s retreat: 1) refocusing on population health, 2) aligning health information strategies with health strategies, and 3) enhancing the relationship with HHS, with a sub-point of strengthening the relationship with NCHS. She said the Committee has made progress in refocusing on population health. She asked Mr. Scanlon to comment on the alignment of health information strategies with health strategies, and on enhancing the relationship with HHS. Mr. Scanlon suggested meeting with the Deputy Secretary, Claude Allen, because it is difficult to get time with the Secretary. It was agreed that Dr. Lumpkin would meet with Mr. Allen, and that efforts would continue to set up a meeting with the Secretary.
Regarding the relationship with NCHS, Ms. Greenberg noted that an annual briefing by Dr. Sondik has been instituted. The Board of Scientific Counselors (BSC) discussed last year has been chartered, but there is a freeze on appointments. Nothing has been done on a liaison between the two bodies, such as having one person serve on both NCVHS and the BSC. Members expressed support for the idea of having such an overlap, to promote coordination.
Mr. Scanlon reported that the appointment of new NCVHS members is on hold because of the aforementioned freeze on appointments to advisory committees. There have been good nominations, however, and he is confident that a good slate will be presented. The Secretary will make the appointments, filling four or more vacancies.
The Secretary is very interested in regulatory reform, initially affecting primarily CMS and FDA. There is an effort to identify suggestions for regulatory relief, improvement, and streamlining, while still achieving the goal of the regulations. An effort to harmonize across regulatory agencies may be involved, as well. There will probably be hearings around the country, particularly to hear from industry. NCVHS might consider having some interaction with that process. If there is an advisory committee in this area, it will be important that its duties not overlap with the Committee’s advisory responsibilities on HIPAA regulations. Any recommendations that come out of this process would have to be addressed through the rulemaking process.
Turning to the FY2003 budget, Mr. Scanlon said the Secretary has outlined his priority areas and asked agencies to see how they can pursue them in their FY2003 budgets. He noted that HHS is on a 5-year trajectory to double the NIH budget by 2003. Other agencies can expect to see little or no growth in 2003, especially if they do not get the levels slated for the 2002 budget, on which 2003 will be based. The Secretary’s priorities are as follows:
The Department’s management initiatives will stress e-government initiatives, work force restructuring, planning for the future, outsourcing, and the use of performance measurement linked to the budget process.
Mr. Scanlon noted the widespread frustration over the fact that the Department still does not have most of its political appointees. Most agencies do not have new heads. These gaps have implications for work planning. Asked whether the prevention priority would be carried out through CDC’s prevention programs, he said he expected the biggest focus to be through a public education campaign. There is no evidence in the budget process that the new administration will enhance or promote existing initiatives focused on eliminating disparities.
Finally, the group discussed the possibility of arranging a briefing from the HHS CIO. It was noted that the CIO does not share the Committee’s view of the content-oriented national HHS leadership needed to realize the NCVHS vision for the NHII.
Ms. Trudel joined the Subcommittee by telephone for this portion of the meeting. Dr. Cohn identified the following activities slated for the Subcommittee:
Dr. Cohn said he hoped code sets would be “the big issue for 2002” ¾ a priority that was endorsed by the Executive Subcommittee. Ms. Coltin suggested having a high-level panel at a full Committee meeting to talk about the process for addressing code set issues. Ms. Greenberg said the industry is looking to NCVHS to play a role in this area, and it will have to carefully plan its hearings so everyone feels heard.
On another topic, Dr. Cohn expressed concern about the extraordinary workload of HHS staff with respect to HIPAA implementation, and he wondered if NCVHS could do anything constructive in this area. Ms. Trudel agreed about the workload, adding that the hearings with early implementers had been helpful in identifying what gaps need to be closed.
Dr. Queen joined the Subcommittee by telephone for this portion of the meeting. Dr. Mays said the Subcommittee is reorganizing itself and looking at what can be brought to closure and what new issues to take on. It is considering organizational, personnel, and content issues. Noting the importance of continuing and bringing to appropriate closure the work on quality and patient safety, she recommended that after it hears a forthcoming panel presentation on patient safety, the Committee should produce a report synthesizing what it has learned from all the presentations on quality.
Ms. Coltin said the report would probably include recommendations. Topics addressed will include coding issues, core data elements, administrative data issues, the need for flexibility for states, and survey issues, among others.
Dr. Mays said the Subcommittee would look at how to ensure that its reports “have a life to them.” She noted that it needs additional active staff members, and that training for participants of this and other Subcommittees would be useful.
In response to a query from Dr. Mays about whether the Populations Subcommittee needs to do more work on HIPAA, Dr. Cohn raised the handling of race/ethnicity data on administrative transactions and whether the OMB/Census Bureau approach is constructive. Dr. Lumpkin said the basic issue before the Committee in this respect is why and how to use administrative data to collect information on disparity and inequity in the health care system. A more practical question is whether it is necessary to map race/ethnicity administrative data to Census data.
These questions stimulated a rich discussion among members. Dr. Mays noted that the Subcommittee would be holding hearings to identify what the issues are, starting with talking with people in the Department about how they are implementing the OMB guidelines. Then it will meet with data users. An overarching question is the value of collecting race/ethnicity data as a means of understanding the health of populations and examining the distribution of health in the population. A related issue is the usefulness of administrative data for this purpose. The Subcommittee will consider where NCVHS should try to have an impact. Dr. Cohn commented that he would welcome “fresh thinking” on these questions. Mr. Scanlon noted the relevance of the forthcoming National Academy of Sciences study of the utility of race/ethnicity information in health and human services systems, which is congressionally mandated and will be HHS-funded. Ms. Greenberg suggested that Dr. Mays serve as a liaison between that study and the Committee.
For future consideration by the Populations Subcommittee, Dr. Lumpkin pointed to the granularity of data and the question of whether the unit of measurement should be the community, in contrast to the current effort to derive community data from national data. The nation needs a clear policy on this issue, he said. Dr. Starfield noted the relevance of the modeling process that she and Dr. Friedman are working on.
Mr. Rothstein previewed the hearing planned for the following week, with panels on consent, minimum necessary, research, and marketing. The Subcommittee will then develop recommendations which it hopes to present in September. In its breakout session that month, it will plan its forthcoming agenda. The items that he will propose for consideration include the privacy aspects of these subjects:
Mr. Rothstein said he would like to see the Subcommittee develop closer ties and more synergy with the other subcommittees. He noted that they might work together on issues related to unique identifiers and linking. He also noted the need for additional staff support, and the group discussed ways to address this need, such as asking OCR for staff support. Asked how the Subcommittee hoped to assist in implementation of the privacy regulations, he said OCR appears to want an ongoing relationship, and one is likely for the next couple of years. For example, NCVHS might hold additional hearings and make recommendations.
Dr. Cohn and Mr. Rothstein embraced Ms. Greenberg’s suggestion that future reports to Congress on HIPAA implementation include privacy.
Dr. Lumpkin reported that the Workgroup is circulating its draft recommendations for comment. They were presented to the Data Council in June. The Executive Subcommittee briefly discussed the tenor of responses to the recommendation that HHS create a new office to provide energizing, content-oriented leadership to a collaborative effort to build the NHII. The Workgroup is aiming to present the final NHII report to the Committee at the November meeting.
Dr. Friedman reported that the Workgroup is working on the outline for its report, is soliciting suggestions from all who participated in any of the meetings on the health statistics vision, and hopes to present the final report for review at the February 2002 NCVHS meeting. The group discussed some of the issues the Workgroup is facing, notably the involvement and ownership in the final report of the Committee’s partners in this project, NCHS and the Data Council. The questions particularly concern the aegis for the recommendations and whether they will be only from NCVHS. The Subcommittee also discussed the fact that the National Academy of Sciences/Committee on National Statistics recently released its summary report of the workshop it held in November, 1999. Of particular concern was the fact that no one in the Department or NCVHS was given an opportunity to review the document prior to its publication, or even notified that it was coming.
Subcommittee members offered suggestions for widening the process for receiving comments on the recommendations in the NCVHS health statistics report. Members felt that people other than those who participated in past meetings on the vision should have a chance to participate. Historically, NCVHS has not sought to have consensus with stakeholders about the content of its recommendations; however, members agreed that there could be benefits from offering ample opportunity for input. Dr. Friedman asked for suggestions of groups that should be invited to comment.
A theme of this discussion was how to maximize the potential impact of the report, as a tool of both professional education and policy making. It was noted that some groups might pay more attention to the report if they had been invited to comment on it prior to its final version. Ideas for having the report published and widely disseminated were offered. One possibility, Dr. Friedman said, is to have different products for different audiences. He noted that elements of the report will be adapted for a book. Journal articles were also suggested.
Dr. Cohn observed that in general, the Committee could do a better job of gaining visibility for its products and recommendations. It might learn from the actions of the IOM and the National Academy of Sciences.
Returning to the subject of the aegis for the final report on health statistics for the 21st century, Dr. Friedman said the NCVHS Workgroup has regarded the process as a joint effort among NCVHS, the Data Council, and NCHS; however, at least part of the product, notably the recommendations, may be presented not as a joint product but rather as an NCVHS product.
Dr. Reilly resumed a discussion begun at the last full Committee meeting, about ways for NCVHS to advise AHRQ and the Department on development of the National Quality Report. AHRQ is seeking a vehicle for receiving both input from external stakeholders and advice from technical experts, using existing FACA committees. The Agency sees NCVHS as a “logical candidate” ¾ preferably serving as “the hub” ¾ and the Committee has already expressed interest in playing a role. Other groups that will be involved are the National Quality Forum, a membership organization, and AHRQ’s National Advisory Committee (NAC), a FACA committee. A mechanism of collaboration among these groups needs to be developed. The present discussion aims to clarify the options and possibly decide on next steps.
Ms. Coltin observed that AHRQ needs advice in two areas: the measures to fill out the framework, and the data issues involved in creating those measures. The Committee’s experience and interest is in the latter area, and the Forum’s focus has been on the former, creating a complementary relationship. She noted the following categories: measurement data that are already collected or readily available, measurements that are feasible but not currently collected, and potentially useful measurements for which data are a problem. NCVHS could respond to recommendations for measures with recommendations around data. It could help identify existing mechanisms that could be tapped to address gaps, and address privacy issues. NCVHS has taken a lot of testimony around barriers to collecting information for creating quality measures, and it plans to produce a report in the next year synthesizing the testimony.
Turning to the mechanisms, Ms. Greenberg observed that the National Quality Forum cannot advise AHRQ, and she suggested that NCVHS could review their recommendations and then advise AHRQ on the data implications and implementation of the measures. Questions are whether the AHRQ advisory mechanism needs to “bless” the measures before they are adopted, and whether hearings will be needed after the Forum has already deliberated on the measures.
Dr. Reilly said he saw the National Quality Report and the Forum activities as “overlapping, but not completely overlapping, circles.” Some of the Forum’s recommended measures will be included in the report, but not necessarily all. He added that of the three groups mentioned above, he would like to see NCVHS in a centralized role because this is a Departmental initiative, not just an AHRQ one. NCVHS could be the point through which AHRQ receives input from the Forum, the public, and members of the NAC. The details of the working relationship among the three bodies would need to be worked out. Joint hearings are one possibility. He added that the sister report to the Quality Report is the National Disparities Report. The Quality Report will touch on equity issues and point to the Disparities Report for the full analysis. This process also will need advisory functions and input.
Mr. Scanlon expressed confidence that the procedures can be worked out. He is also confident about the credibility of the process, because its purpose is information dissemination, not regulation.
Dr. Lumpkin returned to the theme of integration, noting the need for consistency between other standards on health information and the “de facto standards” being developed for quality measurement. The Committee has a role to play in advising the Department on closer integration between data collection and analysis in all areas, including this one.
Ms. Greenberg and others stressed the implications of this NCVHS role for its future membership and staffing. It will need additional staff support from AHRQ and members whose expertise includes (but is not limited to) the quality area. Executive Subcommittee members were receptive to moving ahead in this area, provided these membership and staffing requirements can be met.
The Subcommittee returned to the list of issues identified at the 2000 retreat.
Members agreed that efforts should be made to remove inactive staff from the rolls and to recruit staff with expertise and willingness to make the time commitment.
· Ms. Greenberg noted that producing effective recommendations starts with making sure there is an audience for them before embarking on a project. She suggested that the Executive Subcommittee discuss this at a forthcoming meeting.
· After considering various options for nurturing esprit, the group agreed that the best regular mechanism for this is routinely to have dinner together in an inexpensive place, perhaps even the same one, on of the evening when people are in town for NCVHS meetings. Staff will organize this, and Dr. Lumpkin will announce in September that it will happen in November.
These items were mentioned as possibilities or certainties for the full Committee agenda:
Finally, the Subcommittee agreed that the next NCVHS annual report will cover 2000-2002. Dr. Lumpkin then adjourned the meeting.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
John R. Lumpkin, M.D. 2/7/02
\s\
Chair Date