The Subcommittee on Populations of the National Committee on Vital and Health Statistics was convened on February 2 in the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:
The Subcommittee met in break-out session during the February NCVHS meeting to review draft reports on the insular territories and on the Medicaid managed care project. They also briefly discussed a proposed project on SES collection and analysis.
The Subcommittee reviewed a draft report prepared by Mr. Hitchcock and Ms. Turek. It will be revised based on the comments and recommendations offered during this meeting.
A major theme of the discussion was the challenge of having to address a very disparate group of islands and territories in a single report. The report must state the reasons for doing so and the ways in which they are and are not alike -- e.g., the fact that their connection to the U.S. is "a reflection of historical idiosyncracies." Dr. Iezzoni explained that the Department of the Interior suggested whom to invite to the July meeting. The authors were asked to incorporate quotations from hearing participants into the report.
Subcommittee members noted that the territories' problems are not substantively different from those faced within the U.S., especially by people in isolated areas and on Indian reservations; however, they are more serious because of the isolation of the island areas.
Members agreed with Ms. Ward that a central recommendation should be restoration of the special Department of the Interior office that used to help the islands address issues and solve problems. They agreed that the report should be candid about the serious problems raised by the Puerto Rican representative, e.g., about eligibility, which she presented as a data issue. Inevitably, many of the islands' data issues are linked to political issues.
Regarding the diversity among the territories, it was suggested that recommendations be divided into those for the Atlantic and those for the Pacific.
The general view was that the Committee's recommendations should be fairly inexpensive or cost-neutral because of the unlikelihood of additional funding. Two possible recommendations concern greater cooperation among the islands and training for local staff so they can train others, using existing educational resources. In general, the islands need help building infrastructure, which need not be very expensive.
The underlying point is not to promote these areas over the interests of other areas; rather, it is that these areas are part of the U.S. and should not have second-class status. Members were not certain of how conditions for the islands compares to that of Indian reservations. At a minimum, the Subcommittee wants to "put these territories on the radar screen."
Hearing participants asked the Committee to validate the need for health data, giving them support in making that argument to their political leaders. This is a potential form of impact for the report.
The group considered ways to draw distinctions among the needs of the different areas, e.g., between Puerto Rico and the other areas. Staff was asked to review the transcripts for details on specific requests, e.g., by the Puerto Rican representative, and also to look at an earlier report of a group headed by Mr. Van Amburg.
They discussed how to treat basic principles put forward by Dr. Amaro -- specifically, self- determination, inclusion, and social justice and equity. Mr. Hitchcock observed that the principle of inclusion works on a policy level. Members favored approaching these principles in terms of data issues.
The group agreed that the report should include a statement up front about the historical responsibility of the U.S. for these areas and the importance of helping them develop infrastructure in order to be more self-reliant. They then discussed issues relating to HIPAA and the Census.
Mr. Hitchcock was asked to take the lead in revising the draft report on the basis of the foregoing discussion. Dr. Iezzoni thanked him and Ms. Turek for their work on the project thus far. The next draft will be circulated to Subcommittee members and interested government staffers for comments.
Dr. Starfield outlined her concerns about collection and standardization of data on socio- demographic characteristics, an issue that has fallen between the cracks with NCVHS. A particular concern is that race and ethnicity data are not being dealt with in the work on administrative simplification.
Ms. Greenberg explained the complicated situation with the enrollment (834) transaction covered by HIPAA. In short, employers and plan providers are not required to use the 834 in the way the claim (837) transaction is required of providers and payers by HIPAA. Further, neither Medicare nor Medicaid uses the 834. CDC is working on getting congruence with the new OMB Standards on the Classification of Federal Data by Race and Ethnicity. Another issue is getting congruence in the code sets, complicated by the lag time in implementing the standards.
Dr. Starfield linked these issues to the legitimate debate about whether to collect race and ethnicity on the encounter forms or as part of enrollment. An alternative to either approach to getting the data is through geocoding. Some Subcommittee members said this is not "better than nothing" because the data can be very erroneous. The group discussed current uses of geocoding and noted that another major problem with that is confidentiality.
Dr. Starfield mentioned the alternative of starting with the data sets under federal jurisdiction, rather than "taking on HIPAA," as a way of getting core data for various purposes such as looking at quality of care. The group discussed whether the field is yet motivated to use the data for such purposes. Ms. Ward suggested that the Subcommittee try to make a case that can be substantiated for having socio-demographic data.
Following further discussion, Dr. Iezzoni asked Dr. Starfield to head an ad hoc group to develop a proposal for productive Subcommittee action in this area. Dr. Takeuchi and Dr. Mor volunteered, and Dr. Amaro and Dr. Friedman will be recruited as well.
The group reviewed the draft contract purchasing language that Ms. Coltin will present to the full Committee on February 3, asking for comments subsequent to the meeting. The draft under discussion is #4, and Ms. Rosenbaum explained the changes from #3.
The draft was developed by a working group in which Medicaid, HCFA, SAMHSA, and HRSA were represented and in which Ms. Coltin participated. Ms. Rosenbaum said the work group was excellent and the process worked very well. Still, it was a difficult draft to produce because of the focus on data generated from managed care. This involves both the data requirements that belong in the contract and the duties of the managed care organization (MCO) in collecting and reporting the data. The "mess" of various federal and state laws on data further complicate things. The biggest issues are in the area of public health data, where the laws are very outdated. The GW Center will recommend a thorough review of public health laws by CDC, especially in regard to out-of-state laboratory data.
At Dr. Iezzoni's request, Ms. Rosenbaum reviewed the chief issues in regard to racial and ethnic identifier data from her perspective, noting that there is no definition of encounter in the statute on managed Medicaid. She worries about having providers capture racial and ethnic data; nor can the MCO collect the information because it probably will not have it unless it was provided by the State. The issue has three facets: the locus of the information, its transmission, and matching data from different sources.
Dr. Iezzoni remarked that the Subcommittee will have to deal with this issue in the final report, because it was repeatedly raised in the hearings. A sub-issue is the role that identifiers play in linking encounter and enrollment data. Ms. Rosenbaum said the best the Subcommittee can do is to get the instruction right; it can't ensure that the plans carry it out.
Ms. Coltin reviewed her plans for briefing the Committee and preparing them to consider the draft contract purchasing language. She will focus on underlying principles, such as the locus and correct level of accountability. Ms. Rosenbaum stated an important underlying theme: the proper functioning of data in a managed care world depends on the extent to which state legislatures have thought through the implications of their statutes requiring data from MCOs for public health authorities. A problem is that the state needs data for its police powers, to protect the public health; leaving this just to the managed care contract puts public health at risk. She agreed with Dr. Millman that another important principle concerns a menu of what states could require to support their policies.
In consultation with Ms. Rosenbaum, the Subcommittee agreed on the following process: Ms. Coltin will present the contract language (which has not yet been vetted publicly) to the Committee, with copies for everyone present at the meeting. They will be asked to get their comments to Ms. Rimes promptly. Ms. Rosenbaum will convene one or more conference call(s) involving 15-20 representatives of agencies, plans, consumers, and other interested parties, to get their comments. The comments of the associations also will be solicited. Ms. Rosenbaum will then write up all the comments, discuss them with designated Subcommittee representatives, and prepare a final draft that will be posted. The aim is to approve the report at the June NCVHS meeting.
Dr. Iezzoni asked Ms. Jones to schedule a two-day meeting for the Subcommittee in May.
Members then offered their comments on the draft language. Dr. Mor noted that activities on dual enrollment may be relevant. He also called attention to the provision in the draft language stating that the contracting agency owns the data on Medicaid enrollees. The group discussed issues raised by this provision. Ms. Coltin said it would help MCOs to have clear state and federal guidance regarding employer access to individually identifiable health care data.
The Subcommittee moved on to reviewing the draft report produced by the GW contractors. Comments were generally favorable. Members supported Dr. Iezzoni's suggestions for restructuring it and adding background on the motivation for the project. She asked for discussion of possible recommendations.
Dr. Mor observed that recommendations lie in the contract language. A related issue concerns the use of common data elements, which the testifiers said they want along with consistent definitions. These would make possible evaluative and comparative tables. The group discussed how the recommendation should be framed. There was support for having NCVHS formulate language for a common definition of encounter, but brief discussion showed the difficulty of doing so. At a minimum, the report will recommend agreement on definitions and data elements.
Another recommendation concerns the need for race and ethnicity data, plus language. Reason for Medicaid eligibility is another possibility. Also, concern about the lack of trained analytic staff may warrant a recommendation. One possibility is to recommend that HCFA provide states with training such as Applied Statistics Training Institute courses. Noting that there are both money and human resource issues, members suggested recruiting smart, trainable people and offering them fellowships for courses of three to twelve months. Another approach is to assign CDC people to the field.
Dr. Newacheck raised the issues of access to care and satisfaction with care. He recommended the use of Medicaid CAHPS (Consumer Assessment of Health Plan Study), either required or conducted by the states. This would have to be translated.
Another area in need of a recommendation relates to carve-out services in mental health and substance abuse. In such instances, the state should require the same encounter data from those vendors that it does from MCOs, in order to link the information. Ms. Coltin noted the problems for MCOs in the absence of data on their enrollees' mental health care or pharmaceutical use, for example.
Another area: data dissemination and availability, to ensure that data are available in the public domain and that summary data are available to prospective enrollees. The group discussed the impact of MMIS and BBA on these factors.
Dr. Iezzoni recalled the problem recipients described of having to report the same information repeatedly, and she suggested a recommendation that states consolidate their data requests and make them as unintrusive as possible for individuals. This could be tied to a privacy/confidentiality section. She also noted the need for sensitivity to the burden for small safety-net providers in having to develop infrastructure for data collection and reporting. Finally, she recalled Dr. Amaro's remarks about getting encounter data on specialized services such as drug counseling for pregnant women.
In about two weeks, Ms. Markus will supply a new draft to the Subcommittee incorporating the foregoing comments. It will go to the full Committee. The Subcommittee will discuss the report at its May meeting.
Dr. Iezzoni thanked Ms. Markus and 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