Understanding the patient perspective on research access to national health records databases for conduct of randomized registry trials. (1st July 2018)

• Record Type: Journal Article
• Authors: Avram, Robert; Marquis-Gravel, Guillaume; Simard, François; Pacheco, Christine; Couture, Étienne; Tremblay-Gravel, Maxime; Desplantie, Olivier; Malhamé, Isabelle; Bibas, Lior; Mansour, Samer; Parent, Marie-Claude; Farand, Paul; Harvey, Luc; Lessard, Marie-Gabrielle; Ly, Hung; Liu, Geoffrey; Hay, Annette E.; Marc Jolicoeur, E.
• Is Part Of: International journal of cardiology. Volume 262(2018)
• Page Start: 110
• Page End: 116
• Publication Date: 2018-07-01
• Subjects: Administrative health databases -- Data linkage -- Randomized registry trials -- Cardiology research -- Trial design -- Survey; Cardiology -- Periodicals; Electronic journals; 616.12
• DOI: 10.1016/j.ijcard.2017.12.074
• Languages: English
• ISSNs: 0167-5273

Abstract

Abstract: Background: Use of health administrative databases is proposed for screening and monitoring of participants in randomized registry trials. However, access to these databases raises privacy concerns. We assessed patient's preferences regarding use of personal information to link their research records with national health databases, as part of a hypothetical randomized registry trial. Methods and results: Cardiology patients were invited to complete an anonymous self-reported survey that ascertained preferences related to the concept of accessing government health databases for research, the type of personal identifiers to be shared and the type of follow-up preferred as participants in a hypothetical trial. A total of 590 responders completed the survey (90% response rate), the majority of which were Caucasians (90.4%), male (70.0%) with a median age of 65 years (interquartile range, 8). The majority responders (80.3%) would grant researchers access to health administrative databases for screening and follow-up. To this end, responders endorsed the recording of their personal identifiers by researchers for future record linkage, including their name (90%), and health insurance number (83.9%), but fewer responders agreed with the recording of their social security number (61.4%, p < 0.05 with date of birth as reference). Prior participation in a trial predicted agreement for granting researchers access to the administrative databases (OR: 1.69, 95% confidence interval: 1.03–2.90; p = 0.04). Conclusion: The majority of Cardiology patients surveyed were supportive of use of their personal identifiers to access administrative health databases and conduct long-term monitoring in the context of a randomized registry trial. Highlights: Use of health administrative databases is proposed for screening and monitoring of participants in randomized registry trials. However, access to these databases raises privacy concerns. Out of 590 cardiology patients surveyed, 478 agreed to always grant access to health administrative databases for screening and follow-up. This indicates the need of a balanced healthcare data access system where data-sharing remains a possibility.