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