“Giving something back”: A systematic review and ethical enquiry of public opinions on the use of patient data for research in the United Kingdom and the Republic of Ireland

Abstract

Background: Use of 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 opinion and understanding about this work, have lagged behind. We aimed to systematically review the literature on UK and Irish public opinions of medical data use in research, critically analysing such opinions 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 wider 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 EHRs for research for the common good, this very rarely led to unqualified support. The public expressed two generalised concerns through a variety of hypothetical examples. 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 data guardians should address when evaluating proposals for the secondary use of data.