"Giving something back": A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland.

ABSTRACT: Background: Use of patients' medical data for secondary purposes such as health research, audit, and service planning is well established in the UK. However, the governance environment, as well as public understanding about this work, have lagged behind. We aimed to systematically review the literature on UK and Irish public views of patient data used in research, critically analysing such views though an established biomedical ethics framework, to draw out potential strategies for future good practice guidance and inform ethical and privacy debates. Methods: We searched three databases using terms such as patient, public, opinion, and electronic health records. Empirical studies were eligible for inclusion if they surveyed healthcare users, patients or the public in UK and I

SUBMITTER: Stockdale J 

PROVIDER: S-EPMC6402072 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature