Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence

Introduction International sharing of health data opens the door to the study of the so-called 'Big Data', which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a 'social license' is identifying the views patients and the public may hold with regard to data sharing for health research. Methods We performed a narrative review of the empirical evidence addressing patients' and public views and attitudes towards the use of health data for research purposes. The literature databases PubMed (MEDLINE), Embase, Scopus and Google Scholar were searched in April 2019 to identify relevant publications. Patients' and public attitudes were extracted from selected references and thematically categorised. Results Twenty-seven papers were included for review, including both qualitative and quantitative studies and systematic reviews. Results suggest widespread-though conditional-support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. Studies showed agreement on the following conditions: value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility and accountability. Conclusions Our results indicate that a social license for data-intensive health research cannot simply be presumed. To strengthen the social license, identified conditions ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests.

Automated summary

This study conducted a narrative review to investigate patients' and the public's views and attitudes towards the use of health data for research purposes. The results suggest that there is widespread support, albeit conditional, for data sharing for health research among patients and the public. Although participants recognized the actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. The study identified important conditions for data sharing, including value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility, and accountability. To strengthen the social license for data-intensive health research, these conditions should be operationalised in a governance framework that incorporates the diverse patient and public values, needs, and interests.