The Feasibility of Using Electronic Health Data for Research on Small Populations. Methodology

09/01/2013

We conducted semi-structured telephone interviews with 22 expert informants experienced with use of electronic health data for research—in some cases specifically with our four target populations. Initial interviewees were identified through research team knowledge and literature, followed by a snowball sampling technique where interviewees suggested of other relevant experts. Interviewees came from organized delivery systems, universities, private research institutions, and a supplier of health information technology (HIT) (see Table II.1) and were leaders or participants of a number of well-established research networks that use EHRs for research (see the Appendix to Part II). Topics in the interview guide were based on literature as well as on the specific experience represented by each interviewee. They included the advantages and challenges of using EHR data for research, the types of research for which EHR data has the most potential, issues related to sharing data between organizations, and consent, privacy, data security, and confidentiality.

We also conducted a targeted review of literature review that explored technical, legal, and organizational issues related to EHR-based research. Our informants identified additional published and unpublished materials for us to read and review, including websites, materials from major projects using EHRs, and presentations at conferences or other meetings. Using these materials as a starting point, we identified search terms and utilized PubMed and other databases to find other relevant literature. This search resulted in 118 articles in the peer reviewed and gray literatures. See the References in Part II section for a list of citations.

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