Patient preferences for research access to administrative data in Ontario.

144 Background: Clinical trials collect outcome data until the trial ends. Subsequent health data is often available in government or health care administrative databases, yet this information is often not made available to researchers. We assessed patient preferences of long-term linkage of such administrative databases to clinical trials databases. Methods: A self-reported questionnaire was administered to outpatients in clinics of academic and community cancer centres. Cancer patients were presented with a hypothetical scenario of a clinical trial and asked about their willingness to allow confidential research access to their personal health information contained in administrative databases. Results: Of 524 patients, 54% were females, median age was 60 (range 19–93), 81% were Caucasian, and 61% had post-secondary education. Of cancer sites, 20% had breast cancer, 17% GI, 14% GU, 13% hematology, 12% thoracic, 12% head/neck and 11% gynecologic cancers. One-third (33%) had participated in a clinical tria...