Many small populations have distinctive health and health care needs but have been difficult to study in survey research and other traditional approaches. This project explored the feasibility of using electronic health record (EHR) and other electronic health data for research on small populations. The project identified four small populations to illustrate a range of health and health care needs and considerations for research: Asian subpopulations, lesbian, gay, bisexual, and transgender populations; rural populations, and adolescents for autism spectrum disorders.
Findings for the use of EHRs for health research on small populations included: the need for agreement on standards to protect privacy and confidentiality of EHR data when it is shared electronically for research purposes; development of the infrastructure to share EHR data for research purposes (as opposed to treatment purposes) across multiple institutions; and, the need for formal mechanisms to address technical and legal issues of data extraction from EHRs for research purposes.
Report Title: The Feasibility of Using Electronic Health Records (EHRs) and Other Electronic Health Data for Research on Small Populations
Agency Sponsor: OASPE, Office of the Assistant Secretary for Planning and Evaluation
Federal Contact: Michael Millman, 202-260-6211
Performer: The Urban Institute
Record ID: 10229 (September 30, 2013)