The Importance of Relevance: Willingness to Share eHealth Data for Family Medicine Research

Objective: To determine the proportion of family medicine patients unwilling to allow their eHealth data to be used for research purposes, and evaluate how patient characteristics and the relevance of research impact that decision. Design: Cross-sectional questionnaire. Setting: Acute care respiratory clinic or an outpatient family medicine clinic in Montreal, Quebec. Participants: Four hundred seventy-four waiting room patients recruited via convenience sampling. Main Outcome Measures: A self-administered questionnaire collected data on age, gender, employment status, education, mother tongue and perceived health status. The main outcome of was self-reported relevance of three research scenarios and willingness or refusal to share their anonymized data. Responses were compared for family practice vs. specialty care patients. Results: The questionnaire was completed by 229 family medicine respondents and 245 outpatient respondents. Almost a quarter of all respondents felt the research was not relevant. Family medicine patients (15.7%) were unwilling to allow their data to be used for at least one scenario vs. 9.4% in the outpatient clinic. Lack of relevance (OR 11.55; 95% CI 5.12–26.09) and being in family practice (OR 2.13; 95% CI 1.06–4.27) increased the likelihood of refusal to share data for research. Conclusion: Family medicine patients were somewhat less willing to share eHealth data, but the overall refusal rate indicates a need to better engage patients in understanding the significance of full access to eHealth data for the purposes of research. Personal relevance of the research had a strong impact on the responses arguing for better efforts to make research more pertinent to patients.