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

Abstract：

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.

journal_name

J Med Ethics

journal_title

Journal of medical ethics

authors

Buckley BS,Murphy AW,MacFarlane AE

doi

10.1136/jme.2010.037903

subject

Has Abstract

pub_date

2011-01-01 00:00:00

pages

50-5

issue

eissn

0306-6800

issn

1473-4257

pii

jme.2010.037903

journal_volume

pub_type

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