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

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

SUBMITTER: Kalkman S 

PROVIDER: S-EPMC8717474 | biostudies-literature | 2022 Jan

REPOSITORIES: biostudies-literature