eprintid: 10089109 rev_number: 22 eprint_status: archive userid: 608 dir: disk0/10/08/91/09 datestamp: 2020-01-09 12:15:15 lastmod: 2021-12-18 23:43:58 status_changed: 2020-01-09 12:15:15 type: article metadata_visibility: show creators_name: Kalkman, S creators_name: van Delden, J creators_name: Banerjee, A creators_name: Tyl, B creators_name: Mostert, M creators_name: van Thiel, G title: Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence. ispublished: inpress divisions: UCL divisions: B02 divisions: DD4 keywords: Confidentiality/privacy, information technology, patient perspective, scientific research note: This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/. abstract: 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. date: 2019-11-12 date_type: published official_url: https://doi.org/10.1136/medethics-2019-105651 oa_status: green full_text_type: pub language: eng primo: open primo_central: open_green verified: verified_manual elements_id: 1720923 doi: 10.1136/medethics-2019-105651 pii: medethics-2019-105651 lyricists_name: Banerjee, Amitava lyricists_id: ABANE83 actors_name: Flynn, Bernadette actors_id: BFFLY94 actors_role: owner full_text_status: public publication: Journal of Medical Ethics event_location: England citation: Kalkman, S; van Delden, J; Banerjee, A; Tyl, B; Mostert, M; van Thiel, G; (2019) Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence. Journal of Medical Ethics 10.1136/medethics-2019-105651 <https://doi.org/10.1136/medethics-2019-105651>. (In press). Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10089109/1/medethics-2019-105651.full.pdf