The Workgroup/Project on Health Statistics for the 21st Century of the National Committee on Vital and Health Statistics was convened on November 12, 1998 in the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:
The NCHVS Workgroup/Project on Health Statistics for the 21st Century met for two hours on November 12, 1998 as a breakout session during the full NCVHS meeting. They were joined by several representatives of the National Academy of Sciences Committee on National Statistics (CNSTAT). The purpose of the meeting was to review plans for the 21st century project, which include commissioned papers, focus/expert groups, and a CNSTAT workshop.
Dr. Sondik described the thinking that led to this project, and CNSTAT representatives presented their plans for the workshop. The group discussed these elements as well as the papers and expert/focus groups. NCVHS members had suggestions about the framing of the project as well as types of people to involve in it. There was agreement that the participants in the workshop should be visionaries rather than advocates. NCVHS members expressed interest in thinking about how the Committee can implement the ideas generated by the project, notably those concerning the Committee's future role in this area.
The CNSTAT representatives asked for comments on workshop plans, including suggestions for participants and panelists. These should be sent to Ms. Durch, the study director -- jdurch@nas.edu.
The group also discussed plans and alternatives for the focus/expert group brainstorming sessions. Suggestions for questions and participants should be sent to Lisa Broitman -- lcm9@cdc.gov. Mr. Bartlett will help plan and facilitate the sessions.
Next steps include redrafting the work plan and objectives, getting an author for the paper on system robustness, and planning the expert/focus groups.
The meeting began, as usual, with introductions. Several representatives of the National Academy of Sciences Committee on National Statistics were present.
Dr. Friedman noted that the meeting agenda includes reviewing the status of the commissioned papers, the focus groups, and the CNSTAT workshop, and talking about next steps.
At his request, Dr. Sondik reviewed the request from him that launched this project about a year ago. It stemmed from his feeling the need for a clearer sense of a "target" and sense of direction for the National Center for Health Statistics, the Data Council, and health statistics in general, taking into account the many impinging forces. These forces include the changing health care system, technology, biological advances, and HIPAA. Amid these forces, it is prudent for NCHS and the field as a whole to think about alternative futures and how to control systems to aim for the most desirable targets. The major parties in this effort are NCVHS, CNSTAT, and the Data Council. Dr. Sondik has enlisted the support of all three, and this is the first time they have met together. The idea is to define a target for health statistics in general, and within that for NCHS.
Dr. Friedman then described the activities since the initial discussions with Dr. Sondik, involving a series of discussions within NCVHS and with NCHS as well as with HCFA staff. The result is a strategy with three steps:
The focus groups and papers were suggested because of a feeling that health statistics as a field lacks definition and a literature -- in contrast, for example, with public health surveillance and health services research. The groups and papers are intended partly to put boundaries around the subject. Organizers are still looking for someone to write a paper on the characteristics of robust health statistics systems and what can be learned from them. CNSTAT may do one of the papers.
Dr. Sondik said he hoped the workshop would produce a set of recommendations, ideally reflecting a consensus of the participants. Dr. Straf said the Academy supports the idea of a workshop, and may also initiate a more lengthy panel study once the issues are out on the table. (He later said that NAS workshops do not produce recommendations, per se.) Mr. Scanlon noted the example of a CNSTAT workshop held for HHS in December 1997 that identified data needs related to welfare and health reform and from which a document was prepared.
Asked about the implications for NCVHS, Dr. Friedman said this had not yet been a focus in this very collaborative planning process. Dr. Newacheck stated his hope that the workshop and other activities would generate a sense of next steps and actions, and he urged that the Committee think about how to implement the ideas generated by the project. Dr. Sondik observed that the Committee's informatics infrastructure is a good frame of reference for future work in this area, one that should be a theme of the Department, as well. He added that building a common conception of health statistics is a good foundation, especially as forces such as HIPAA are moving the field into new areas such as using administrative data. It was noted that the work should tie in with activities underway in states, CDC, and other countries.
Mr. Hunter noted that the metaphor of developing a road map is useful in viewing these efforts. One aspect is clarifying where the greatest need is for ongoing advice, which relates directly to the Committee's role. So the workshop may result in a couple of paths, including an NAS panel study and new advisory relationships.
Dr. Sondik agreed with Dr.Takeuchi that it would be useful to discuss assumptions about what the future will look like -- for example, greater globalization -- and the implications for health statistics. Globalization is already a reality in the fields of research and standards. These factors should be considered by the focus groups. Dr. Sondik added that one idea is for the paper authors to attend focus groups.
Mr. Scanlon pointed out that the intention is to look at the health sector in general, and not just the federal or governmental sector. Thus the trends to be considered will include privatization.
Dr. Straf expressed discomfort with the term "focus group," which comes from market research and focuses on feelings and opinion; he prefers the rubric of a brainstorming session. Mr. Bartlett agreed that this is "not quite a focus group," for which participants would be selected to represent a segment of the population. These participants offer expertise and might be called "expert groups." He outlined his ideas for the process to be used in these sessions and some of the questions that might stimulate and guide the discussion. He encouraged advance work on the questions and on what materials to provide people in advance as well as where the desired outcomes fit into the broader process. As a general framework, he suggested beginning with wide-ranging brainstorming about what the future will look like and then moving to definitional issues, to open people's minds beyond the perspectives they come in with. It is also useful to state the reasons for the entire process.
Mr. Hunter likened the process to a funnel, leading to a more structured workshop discussion of issues and questions around which earlier explorations have coalesced. Mr. Bartlett suggested asking at expert groups how they would operationalize the ideas generated in their discussions. Dr. Friedman noted that as an alternative to the process outlined above by Mr. Bartlett, one expert group could focus on the future and another could focus on definitions. Mr. Bartlett responded that if the definitional issue is to be addressed in a 21st-century context, then the latter should be laid out as the backdrop.
The group discussed the optimal size of these groups, with Mr. Bartlett recommending 9-12 as ideal and 9-15 as "doable." They also discussed the pros and cons of having two days for these meetings, with Dr. Sondik pointing out the merits of sleeping on ideas that seem good at the time but may not hold up upon reflection.
Dr. Sondik expressed his hope that the process would result in a roadmap to guide future decisions about what resources and activities to invest in, an outcome that would be useful to states and the private sector as well as the federal government. The idea is not to have specific recommendations for investments, but a general sense of what is and will be important, to guide planning and decision making by NCHS and other bodies. Mr. Bartlett noted that having clear goals for the workshop would pay dividends in shaping the expert meetings. (He also pointed out the potential for confusion as to which gathering --workshop or expert/focus group-- is being discussed, and the need to be clear about this.)
Dr. Straf then presented plans for the CNSTAT workshop, the goal for which is to assess where health care and health are headed and the implications for the health statistics system. It will begin with presentations of the work commissioned by NCVHS and the Data Council. (Some papers may just be provided as background.) The plan is to divide "health and health care" into three areas: health status and the determinants of health; the organization and financing of health services; and “the changing data policy and technology environment”. Dr. Straf discouraged the notion that the sessions will generate a consensus; they are more likely to identify new ways of thinking about things. He invited comments.
Dr. Sondik said the panel discussions, representing both federal and non-federal perspectives, are "the meat" of the workshop. The links that are most elusive are those to people outside government. Ms. Ward urged that the delivery system be represented more than the initial plans indicate, given the key distinctions between, and ambiguity about, "plans" and "providers." Dr. Newacheck observed that given enough time, missing perspectives can be introduced through the audience discussion. Mr. Hunter noted the difficulty of finding the best way to address privacy issues. In all areas, there is an underlying choice to be made between convening stakeholders with opposing points of view and convening knowledgeable people without polarized views.
Dr. Straf stated that the Academy will not issue a report of recommendations from the workshop; it is viewed as a deliberative effort with as broad a sweep as possible, generating lists of potential next steps. The size will be 40 to 60 people.
In terms of the type of participant, the group favored the idea of convening "big thinkers" with vision and imagination, not advocates of particular agendas who may have difficulty moving beyond their current positions. Dr. Amaro suggested including policy makers, and noted that legislators are users of data. Dr. Friedman supported this suggestion as a way of highlighting issues about the utility of data. Dr. Starfield suggested having someone with vision represent the state and local health department point of view.
As to the timetable, Dr. Straf said CNSTAT is thinking in terms of June, at the earliest, for the workshop, which Ed Perrin will chair. Participants need to be lined up three months ahead. Expert groups might be held in January or February. People expressed concerns about the number of other meetings in June.
Ms. Li noted that one important topic is federally funded health data collection activities and the issues surrounding them. This includes investigator-initiated activities that end up being coopted as government surveys. Others commented on the plethora of foundation-funded surveys and the need to focus on the entire health sector rather than just federal activities. Dr. Sondik noted that the role of foundations should be addressed in one of the papers as well as in the brainstorming sessions. It was suggested that someone from the foundation sector be asked to write the paper on robustness. Mr. Hunter described a relevant Public Policy Association meeting in 1997.
Dr. Straf reiterated that the workshop will take a broad view of health statistics. CNSTAT is thinking about a follow-on workshop specifically focused on NCHS.
The CNSTAT representatives asked for coordinated comments from the NCVHS Work Group, including suggestions for participants and panelists. Ms. Durch is the study director -- jdurch@nas.edu.
The group then discussed possible content and authors for the paper on robust systems. A sophisticated user of multiple kinds of information was identified as the best type of author. It could either be a "senior statesperson" such as Dorothy Rice (who has declined to be the author) or a less experienced but knowledgeable person who could interview people in the former category.
Mr. Handler noted that the Census Bureau is addressing many of the same issues as NCHS et al., and Mr. Scanlon agreed that it would useful to look at their experience and thinking.
Participants then discussed plans for the brainstorming sessions/focus groups/expert groups. Mr. Bartlett outlined the decisions that need to be made and recommended one-day sessions. The group considered the alternatives of having several groups address the same topic versus having different topics for each group. They leaned toward having the first two address the same topics, with a different configuration for the third meeting. Mr. Bartlett advised allowing time after the first two to plan the third. Dr. Friedman asked members to comment on suggested participants. Dr. Sondik suggested including "identifiable experts" in areas that will influence the future -- e.g., informatics, biology. Mr. Bartlett also asked for suggestions of questions for discussion. Everything should be sent to Lisa Broitman -- lcm9@cdc.gov. Dr. Friedman said the next step is to redraft the work plan and objectives.
Dr. Sondik described a profile of expert focus group participants. The elements include someone with familiarity with the health statistics system, a futurist in the area of health care organization and delivery, someone who knows biology and biomedical research, an informatics expert, a data analyst or end-user, and someone versed in privacy/confidentiality issues. Dr. Amaro urged that the group include someone able to address the issues around population distribution and diversity.
Dr. Sondik thanked everyone for giving the process "a great push forward," and Dr. Friedman adjourned the meeting.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
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