This report draws on information obtained through a two-staged process we were asked to use. The first stage involved a relatively broad, but general, review of perceived information gaps and their causes across a broad spectrum of groups. In this stage, we interviewed more than 50 individuals by telephone. Interviewees included representatives of major national associations, providers, insurers, health plans, and beneficiaries; state officials; foundation staff; and researchers and policy analysts. We also selectively reviewed relevant literature and Web sites to obtain additional information on needs and existing work. These sources document (1) perceptions of health system change by various stakeholders, (2) current data systems and where they are weak or otherwise limited, and (3) efforts to fill gaps, and other related material.
In the second stage, we developed more comprehensive information on efforts by a diverse group of 11 entities to respond to information gaps they or their funders perceived. These entities were selected in consultation with staff from the office of the Assistant Secretary for Planning and Evaluation (ASPE) and the National Center for Health Statistics (NCHS), using a number of criteria to define three priority groupings. The first was for entities engaged in broad and nationally based efforts that would have an ongoing effect on available health information. The second was for entities engaged in priority national efforts that would not necessarily have an ongoing effect, but were still of interest. The third grouping was entities engaged in efforts that were more geographically limited or not ongoing but were still of interest nationally. In this third group, we often limited our selection among entities engaged in somewhat similar activities, such as states. In all groups, we excluded entities engaged in efforts of interest to a narrower audience and set of concerns, as well as certain federal initiatives that would otherwise have been selected had they not already been well known to HHS. Efforts to collect information on these 11 entities focused on understanding the impetus/motivation, content, and perceived strengths and weaknesses of key efforts underway in response to perceived information-related needs. Our efforts included telephone contact typically with several affiliated staff and review of written material.
This paper is intended to address what we learned about specific issues and questions of concern to ASPE. It is not a summary of discrete data collection activities. That is, it synthesizes our insight across a range of information-collection efforts. We describe the context for the project in an overview of health system change and of how information needs are shaped by the responsibilities of diverse groups (Section II). We describe what we learned about the mismatch between information needs of stakeholders and current data systems (Section III). We review what we learned about current efforts to fill gaps and account for limitations with currently available data (Section IV). Finally, we assess the implications of what we learned for priorities and next steps important for HHS to consider as it addresses these issues (Section V). Supplemental material on individual efforts appears in the appendices. Appendix A includes a list of individuals interviewed, Appendix B includes citations of the most relevant written literature, Appendix C includes a list of the 11 entities and activities studied in more depth, and Appendix D includes a review of previous efforts to identify data gaps.