“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

Stockdale, Jessica, Cassell, Jackie and Ford, Elizabeth (2019) “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. Wellcome Open Research, 3 (6). pp. 1-24. ISSN 2398-502X

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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 Ireland and examined attitudes, opinions or beliefs about the use of patient data for medical research. Results were synthesised into broad themes using a framework analysis. Results: Out of 13,492 papers and reports screened, 20 papers or reports were eligible. While there was a widespread willingness to share patient data for research for the common good, this very rarely led to unqualified support. The public expressed two generalised concerns about the potential risks to their privacy. The first of these concerns related to a party’s competence in keeping data secure, while the second was associated with the motivation a party might have to use the data.

Conclusions: The public evaluates trustworthiness of research organisations by assessing their competence in data-handling and motivation for accessing the data. Public attitudes around data-sharing exemplified several principles which are also widely accepted in biomedical ethics. This provides a framework for understanding public attitudes, which should be considered in the development in any guidance for regulators and data custodians. We propose four salient questions which decision makers should address when evaluating proposals for the secondary use of data

Item Type: Article
Additional Information: First Published: https://doi.org/10.12688/wellcomeopenres.13531.1
Keywords: Privacy, Patient Data, Electronic Health Records, Governance, Public, Engagement, Ethics
Schools and Departments: Brighton and Sussex Medical School > Brighton and Sussex Medical School
Brighton and Sussex Medical School > Primary Care and Public Health
School of History, Art History and Philosophy > Philosophy
Subjects: B Philosophy. Psychology. Religion > B Philosophy (General)
R Medicine > RA Public aspects of medicine > RA0001 Medicine and the state. Including medical statistics, medical economics, provisions for medical care, medical sociology > RA0418 Medicine and society. Social medicine. Medical sociology
R Medicine > RA Public aspects of medicine > RA0418 Medicine and society. Social medicine. Medical sociology
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Depositing User: Jessica Stockdale
Date Deposited: 30 Jan 2019 11:52
Last Modified: 02 Jul 2019 13:07
URI: http://sro.sussex.ac.uk/id/eprint/81554

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