Public attitudes to the use in research of personal health information from general practitioners' records: a survey of the Irish general public

• Published in: Journal of medical ethics Vol. 37; no. 1; pp. 50 - 55
• Main Authors: Buckley, Brian S, Murphy, Andrew W, MacFarlane, Anne E
• Format: Journal Article
• Language: English
• Published: England BMJ Publishing Group Ltd and Institute of Medical Ethics 01.01.2011; BMJ Publishing Group; BMJ Publishing Group Ltd; BMJ Publishing Group LTD
• Subjects: Access control; Access to Information - legislation & jurisprudence; Access to Information - psychology; Adolescent; Adult; Aged; Aged, 80 and over; Bioethics; Biomedical Research; Chi-Square Distribution; Confidentiality - legislation & jurisprudence; Confidentiality - psychology; Female; General Practice; Health attitudes; Health care industry; Health Knowledge, Attitudes, Practice; Humans; Information sharing; informed consent; Informed Consent - legislation & jurisprudence; Informed Consent - psychology; Ireland; Male; Medical Records; Medical research; Medicine, Experimental; Middle Aged; Observational research; Personal health; Personal information; Practice Patterns, Physicians; Privacy; Protected health information; Public Opinion; Questionnaires; Research ethics; Scientific research; Studies; Surveys and Questionnaires; Young Adult; Ireland
• DOI: 10.1136/jme.2010.037903
• ISSN: 0306-6800

Introduction Understanding the views of the public is essential if generally acceptable policies are to be devised that balance research access to general practice patient records with protection of patients' privacy. However, few large studies have been conducted about public attitudes to research access to personal health information. Methods A mixed methods study was performed. Informed by focus groups and literature review, a questionnaire was designed which assessed attitudes to research access to personal health information and factors that influence these. A postal survey was conducted of an electoral roll-based sample of the adult population of Ireland. Results Completed questionnaires were returned by 1575 (40.6%). Among the respondents, 67.5% were unwilling to allow GPs to decide when researchers could access identifiable personal health information. However, 89.5% said they would agree to ongoing consent arrangements, allowing the sharing by GPs of anonymous personal health information with researchers without the need for consent on a study-by-study basis. Increasing age (by each 10-year increment), being retired and primary level education only were significantly associated with an increased likelihood of agreeing that any personal health information could be shared on an ongoing basis: OR 1.39 (95% CI 1.18 to 1.63), 2.00 (95% CI 1.22 to 3.29) and 3.91 (95% CI 1.95 to 7.85), respectively. Conclusions Although survey data can be prone to response biases, this study suggests that prior consent agreements allowing the supply by GPs of anonymous personal health information to researchers may be widely supported, and that populations willing to opt in to such arrangements may be sufficiently representative to facilitate valid and robust consent-dependent observational research.