Robert Avram1, Guillaume Marquis-Gravel1, François Simard1, Christine Pacheco1, Étienne Couture2, Maxime Tremblay-Gravel1, Olivier Desplantie1, Isabelle Malhamé3, Lior Bibas4, Samer Mansour5, Marie-Claude Parent1, Paul Farand2, Luc Harvey6, Marie-Gabrielle Lessard6, Hung Ly1, Geoffrey Liu7, Annette E Hay8, E Marc Jolicoeur9. 1. Montreal Heart Institute, Cardiology, Montréal, Québec, Canada; Université de Montréal, Cardiology, Montréal, Québec, Canada. 2. Centre Hospitalier Universitaire de Sherbrooke, Cardiology, Sherbrooke, Quebec, Canada; Université de Sherbrooke, Cardiology, Sherbrooke, Québec, Canada. 3. McGill University, Internal Medicine, Montreal, Québec, Canada. 4. McGill University, Cardiology, Montreal, Québec, Canada. 5. Centre Hospitalier Universitaire de Montréal - Hôtel Dieu Hospital, Montreal, Québec, Canada. 6. Montreal Heart Institute, Cardiology, Montréal, Québec, Canada. 7. University Hospital Network, Toronto, Ontario, Canada. 8. Queen's University, Canadian Cancer Trials Group, Kingston, Ontario, Canada; Queen's University, Department of Medicine, Kingston, Ontario, Canada. 9. Université de Montréal, Cardiology, Montréal, Québec, Canada. Electronic address: marc.jolicoeur@icm-mhi.org.
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 65years (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.
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 65years (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.
Authors: Jeffrey Olgin; Naveen Pereira; Robert Avram; Derek So; Erin Iturriaga; Julia Byrne; Ryan Lennon; Vishakantha Murthy; Nancy Geller; Shaun Goodman; Charanjit Rihal; Yves Rosenberg; Kent Bailey; Michael Farkouh; Malcolm Bell; Charles Cagin; Ivan Chavez; Mohammad El-Hajjar; Wilson Ginete; Amir Lerman; Justin Levisay; Kevin Marzo; Tamim Nazif Journal: JMIR Form Res Date: 2022-06-13
Authors: Annette E Hay; Nicole Mittmann; Michael Crump; Matthew C Cheung; Jessica Sleeth; Judy Needham; Mike Broekhoven; Marina Djurfeldt; Lois E Shepherd; Ralph M Meyer; Bingshu E Chen; Joseph L Pater Journal: Curr Oncol Date: 2021-03-08 Impact factor: 3.677