A vast body of research shows important differences among segments of the population on virtually all aspects of health and health care. These segments may be defined by characteristics such as race, ethnicity, sexual orientation, geography, health conditions or other factors. It is important to understand the needs of these populations in order to better provide patient-centered, culturally appropriate care. Being able to customize care to best serve the needs of different segments of the population is a critical step between the management of population health and personalized medicine. Documenting differences among these segments is an essential starting point for a wide array of policies and interventions to improve peoples’ health. Although much of what we know about the health of the U.S. population comes from national surveys conducted by the federal government, there are major limitations on the use of federal survey data, particularly for studying small populations.
The needs of four example populations and the limitations in studying them using federal survey-based research are explored in the first part of the report. These examples include Asian-American subpopulations; the lesbian, gay, bisexual, and transgender (LGBT) population; adolescents with autism spectrum disorders (ASDs); and residents of rural areas. These populations were selected based on conversations with a number of federal agencies to provide a broad range of pressing health and health care questions and challenges in studying small populations. An additional consideration was to explore populations that are not so small that obtaining sufficient information about them would be infeasible now or in the near future. Due to the specific health care needs as well as the limitations in studying these small populations using survey data, there has been much interest in exploring alternate data sources that can be used for research, such as electronic health record (EHR) data and other existing electronic health data, which are explored in the second part of this report. The report is based on published information, interviews with experienced experts and comments from a technical expert panel.