The Subcommittee on Populations of the National Committee on Vital and Health Statistics was convened on Thursday, May 6 in the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:
The major items on the agenda were reviewing with the authors draft reports on data issues in the insular territories and Medicaid managed care. The Subcommittee met briefly with Deborah Maiese of ODPHP to discuss Healthy People 2010 in the context of the first report. Finally, Dr. Iezzoni outlined her thinking about the forthcoming project on the placeholder for functional status and health status in the Committee's core data element recommendations.
Dr. Iezzoni reviewed the agenda. After Mr. Hitchcock highlighted aspects of the report, members reviewed the latest draft of the report on health data for the insular territories. They moved into discussion after introductions were made.
Dr. Iezzoni explained that in her absence, Ms. Ward would present the Subcommittee's recommendations to the full Committee at its June meeting. Dr. Iezzoni will do some final stylistic editing once substantive revisions are completed.
Members commended Mr. Hitchcock for the quality of the report, and focused on the recommendations. They agreed to acknowledge that some recommendations will require additional resources while stressing the importance of the recommended changes. Dr. Newacheck was asked to draft language on this point. Members also noted that the solutions proposed must be appropriate to the cultural context, public health needs, and capacities in each area. The approaches of the Indian Health Service were cited as a model.
The next principle to be addressed was the need for flexibility in funding requirements, and for creativity in the use of funding. The group then considered how to invoke the principles of inclusion, equity and voice without making a "political" statement in a document on data policy. Dr. Amaro was asked to draft language for this statement. In terms of representation at "the table," it was suggested that representatives of the insular territories should indicate what would make them feel included, and also that there should be a mechanism for getting the issues pertinent to those areas on the table in the Department.
Subcommittee members expressed discomfort with imposing uniformity on the areas, except for the census; but they did express concern about differences in periodicity. The report should recommend clear statements in surveys regarding who is included and who is not. The group discussed sampling issues, looking at the Native American population as an example, as well as the inconsistent practices in translating questionnaires into second languages. They agreed ask a Census representative to check the report for accuracy on these matters.
The group accepted new language drafted by Dr. Newacheck and Dr. Amaro. Dr. Iezzoni thanked Dr. Amaro for initiating this project and Mr. Hitchcock for staffing it and writing the report. Dr. Amaro expressed satisfaction with the outcome as well as hope that NCHVS would "apply the recommendations to itself" in taking these issues into account in the future.
Ms. Maiese joined the meeting briefly to discuss an aspect of the insular territories report concerning Healthy People 2010. Dr. Iezzoni asked her how issues concerning the various insular territories are being addressed in that initiative and document. Ms. Maiese said Dr. Satcher and the Department are encouraging all states and territories to do their own versions of Healthy People 2010. Healthy People 2010 is intended as "a driver for action," and the Department has developed a tool kit to assist in this process. (She noted that Guam has had a "Healthy Guamanians 2000" project.) All the territories are included in the state action contact list.
One principle being promoted is to move beyond assessment to target-setting and action.
Another area deserving of attention, she said, concerns the inclusivity of national data systems. Healthy People 2000 and 2010 baselines do not include objectives for the territories because baseline data do not exist and data systems are deficient. She commended the Subcommittee for calling attention to the need to extend U.S. data to include the territories. The baselines for Healthy People 2010 are expected to undergo a "wholesale revision" in the mid- decade review; perhaps one dimension of that revision can be adding baselines for the populations in the insular territories.
Asked about Guam's experience with its Healthy Guamanians project, she referred the Subcommittee to a Public Health Foundation study of state and local data capacity to develop objectives. She recommending suggesting to territories, states and localities that they draw attention to the lack of data and try to stimulate data collection efforts to close the gaps. Timeliness is another issue with the data.
Ms. Maiese confirmed that to her knowledge, no Healthy People 2010 objectives address any of the islands or territories or include those populations. She speculated about the possibility of linking Hawaii, which has an active Healthy People program, with other Pacific islands to serve as a resource.
Healthy People 2010 will be released on January 25, 2000 with "a big, health-promoting event" in Washington. Asked what Subcommittee recommendation might help get the islands involved in the 2010 campaign, Ms. Maiese suggested recommending a look at the ways the process and products can be replicated at island as well as state levels. Dr. Iezzoni stressed the importance of involving the islanders in any such process. Ms. Maiese noted that the templates for data in OMB race/ethnicity categories will help draw attention to data gaps. Also, the cross- cutting progress reviews can help focus attention on data issues in the insular territories.
Reflecting on this discussion, Subcommittee members agreed that the main points for their report are to encourage people to use Healthy People 2010 to develop local objectives, and to recommend that the Department provide technical assistance to facilitate that process.
Dr. Amaro noted that the applications will differ for the insular areas, on the one hand, and Puerto Rico and the Virgin Islands, on the other, because of the differences in their data systems. Some jurisdictions already have data to use as baselines for objectives, and these might be included in the initial report as subpopulation groups.
Dr. Iezzoni asked Mr. Hitchcock to draft the section on Healthy People 2010 first and circulate it to Subcommittee members.
Mr. Hitchcock was asked to revise the report based on this day's discussion, completing it by May 21 (circulating the Healthy People section in advance). It will be sent to the full Subcommittee, Subcommittee staff, federal agency representatives, and the attendees at the insular areas meeting. Comments received immediately will be incorporated in the draft to be presented to the full Committee on June 22. The Committee will be asked to comment, approve the recommendations, and authorize the Subcommittee to make final revisions once all comments are received. Comments from others will be requested by early July. The revised draft will be sent out for final comment.
Ms. Rimes briefed the Subcommittee on the status of this project and asked them to finalize their recommendations for the report, which will be presented to the full Committee at its June meeting. Members met with Anne Markus, a member of the George Washington University contractor team. She was commended on the initial draft, especially the introductory material.
Ms. Markus reported that the GW team is beginning the vetting process for the draft model contract language. She invited further suggestions for people to contact, in addition to those already suggested.
Dr. Iezzoni raised the question of how prescriptive to be in the recommendations: whether to suggest particular actions or simply suggest that they be considered. Dr. Newacheck spoke in favor of making strong statements. Ms. Ward stated that for core data elements, NCHVS has the greatest chance of effecting change by going directly to HCFA and recommending that they decide what data they want and why, and communicating this to the States. Mr. Handler observed that federal agencies cannot require specific data collection of non-federal entities without OMB approval; it can only encourage it. Dr. Iezzoni asked the GW team to consider the implications of that policy for the draft language.
Mr. Gellman voiced some concerns (raised in a letter sent to the Subcommittee and forwarded to the contractors) relating to both the basic intent and purpose of this exercise and the adequacy of the statements about privacy protection.
On the first point, Dr. Iezzoni said the reason for the project is to find a way to collect consistent information. On the second, she welcomed his past, present and future input and said it would be taken seriously in developing the recommendations and the report. Subcommittee members agreed that the comments on privacy issues should appear at the beginning of the report, in the context section. Ms. Rimes was asked to provide all Subcommittee members with copies of Mr. Gellman's letter. Dr. Iezzoni explained that the material circulated to the Committee at its last meeting was only part of the report, and lacked the contextual material.
Mr. Gellman pursued the question of why NCVHS would actively promote "new institutional mechanisms" for data collection and sharing, given the potential risks to privacy and the absence of privacy laws. He acknowledged the potential value of the data but asserted that this may not outweigh the risks to privacy.
In response, Ms. Coltin explained that Medicaid agencies have traditionally received detailed fee for service claims data and thereby had access to clinical, demographic and other information on beneficiaries. The concern now is that with the shift to managed care, the agency will lose these data and with them the ability to exercise oversight on access to services, quality of care, and so on. Thus, the current effort involves restoring to Medicaid data to which they previously had access.
Dr. Starfield's suggestions for revised section headings were accepted. The group then reviewed the draft recommendations in each category, further refining and developing them. (Highlights and major themes of the discussion are summarized here. The changes adopted by the Subcommittee are reflected in the draft to be presented at the June 23 NCVHS meeting.)
Members in both state public health and managed care sectors joined others in agreeing that rather than recommending that states adopt a set of core elements, HCFA should be advised to adopt a core set of data elements for use by the states. Ms. Coltin noted that a "standardized set of data elements" (the terminology of choice) would allow providers to be more efficient. Standardized code sets also will be recommended.
The group broadened the definition of encounter to include non face-to-face direct contacts between providers and patients, such as telephone consultations. They discussed the distinctions between these encounters and "services to the provider" such as tests.
The chief issues concerning race and ethnicity data were who should collect it, the rationale for collection, whether it should be required for all patients, concerns about merging files, and how to protect patients from discrimination or the fear of discrimination. Dr. Iezzoni noted that importantly, there was a clear recommendation from the field about collecting this information. The Subcommittee affirmed the essential clinical reasons for collecting data on race and ethnicity. Ms. Coltin explained that with commercial payers, enrollment data are supplied by the purchaser; thus it would be consistent to ask States to provide enrollment data for Medicaid enrollees. The group agreed to recommend that these data be collected on everyone, with proper privacy protections. Given that this body of information includes not just race and ethnicity but language and other factors, they agreed to call it "enrollment data."
The Subcommittee agreed to recommend use of the CAHPS (Consumer Assessment of Health Plan Study) in the model contract, to be supplanted if and when new and better instruments become widely used (e.g., for certain subpopulations such as children with disabilities and chronic illness).
It was noted that States have the option of doing their own "satisfaction" surveys rather than requiring MCOs to do them. Dr. Newacheck urged that the Committee clearly recommend that HCFA require Medicaid agencies either to administer the surveys or to require MCOs to administer them. The group favored Ms. Markus' suggestion that the recommendations to HCFA be presented separately from those concerning contracts.
Regarding subcontracted (carve-out) services, discussion focused on whether HCFA would need further OMB clearance to require new reporting. The reasons to recommend sharing of data in these instances were clarified.
The language on privacy protections was moved to the front of the document, where the discussion will be framed in terms of both privacy/confidentiality and security. Dr. Iezzoni asked Ms. Markus to vet the contract language with all members of the Subcommittee on Privacy, and also with Mr. Hitchcock.
Regarding training and staff development, members agreed that the recommendations should stress creative approaches such as partnership with other agencies and academic settings for analytic training. Other resource suggestions included learning collaboratives, evaluation templates, a tool box, fellowship programs, video conferencing, and a Website for analysts. These recommendations will be tied to the one for a standardized set of data elements.
Finally, the group agreed to recommend that reports on plan performance be made public, and that raw data appropriately stripped of identifiable information be made available for legitimate research.
They discussed the general issue of whether the rubric for the report should be shifted from emphasizing contracts, which may be a lightning rod, to emphasizing data issues. Dr. Iezzoni pointed out that the recommendations stand on their own, independent of the contract.
Members expressed satisfaction with the results of the foregoing discussion, which focus the report and make the recommendations more "meaty." Dr. Iezzoni asked Ms. Markus to expedite the vetting process and to work with Ms. Rimes on a revision, which Ms. Coltin will present to the Committee on June 23. The Committee will be asked to approve the recommendations and authorize the Subcommittee to make the final revisions.
Dr. Hendershot joined the discussion at this point. Dr. Iezzoni said that while the Work Group on Quality pursues more on the Medicaid managed care project, the full Subcommittee will begin work on recommendations regarding the placeholder for functional status and health status in the NCVHS core data elements. She predicted that one or more demonstration projects will be recommended to the Department. A contract will be let to Lois Babruk to collect information on current work in these areas.
Dr. Iezzoni noted the magnitude of this subject and the need for a manageable project. She stressed the need to "draw bright lines and parameters" around the project. The group favored focusing on physical functioning and possibly also psychological/ emotional aspects, leaving aside the large area of cognitive functioning. Dr. Starfield suggested asking the contractor to dig into the question of how to do define the parameters.
It was noted that the Interagency Task Subcommittee on Disability Statistics, part of the Interdepartmental Committee on Disability Research sponsored by the National Institute on Disability and Rehabilitation Research of the Department of Education, is an important resource for this project. Eight video sites plus telephone participants, some overseas, are linked together for monthly meetings. This has helped keep the research community aware of new developments in the field. Some 50 agencies have been involved. As the "first foray" into this subject, Dr. Iezzoni asked Dr. Hendershot to look into getting the leading participants in that group to come talk with the Subcommittee about their views on the biggest data gaps on physical functioning.
She said she hopes to hold two hearings. The purpose of one would be conversation with advocacy groups on adult and child disability and chronic disease about willingness to supply data, privacy concerns, and other matters. The other meeting would be for the purpose of hearing from researchers and providers about measurement and assessment issues, professional training, alternative forms of reporting, and so on.
Following these hearings and the contractor's research, the Subcommittee can consider the research agenda and possible demonstration projects.
On administrative matters, Dr. Iezzoni noted the need to pin down staffing for this project, as well as meeting dates for the summer. She asked staff to work on these matters and to notify the contractor about summer meetings.
It was noted that this project overlaps the domain of the Subcommittee on Privacy, among other NCVHS groups.
Dr. Iezzoni then 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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Chair Date