In selecting our example small populations, we targeted those that would illustrate a broad range of health and health care questions, as well as challenges encountered in conducting research to answer them, with existing federal data sources and potential with electronic sources generated in medical care.
Small populations that need study share characteristics with what are typically considered underserved populations: “poor; uninsured; have limited English language proficiency and/or lack familiarity with the health care delivery system; or live in locations where providers are not readily available to meet their needs.”15 To focus our study, we consulted with government officials at the Agency for Healthcare Research & Quality (AHRQ), the Center for Disease Control’s (CDC’s) National Center for Health Statistics (NCHS), and the Health Resources and Services Administration (HRSA) about populations about which information requests have been received that could not be answered from existing federal data sources. We have also reviewed some related National Institutes of Health (NIH) projects, like the Health Care System Research Collaboratory program.
Once the four study populations were selected, we reviewed past federal surveys regarding the extent to which they could be identified in available data sources, and we examined existing literature for information about their characteristics, health and health care issues, as well as reasons why they have been difficult to study in existing federal surveys and with other sources of data.
In addition, we conducted tailored interviews with 16 expert informants whose work has focused on one of our small populations (see Table I.1). Topics in the interview guide were based on issues and concerns raised in available literature and by organizations that serve the populations in question. An initial purposive sample of experts was identified from published sources, advice from the governmental sources mentioned above, and the research team’s knowledge of the field, followed by some snowballing based on suggestions by the experts we were interviewing. Each person gave permission to have the interview recorded, and the interviews were summarized thematically. Particular attention was paid to areas of convergence and divergence among interviews, as well as between interviews and the literature.