A systematic literature review of researchers’ and healthcare professionals’ attitudes towards the secondary use and sharing of health administrative and clinical trial data

Abstract

Abstract A systematic literature review of researchers and healthcare professionals’ attitudes towards the secondary use and sharing of health administrative and clinical trial data was conducted using electronic data searching. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design, or disease setting. Two authors were involved in all stages of the review process; conflicts were resolved by consensus. Data was extracted independently using a pre-piloted data extraction template. Quality and bias were assessed using the QualSyst criteria for qualitative studies. Eighteen eligible articles were identified, and articles were categorised into four key themes: barriers, facilitators, access, and ownership; 14 subthemes were identified. While respondents were generally supportive of data sharing, concerns were expressed about access to data, data storage infrastructure, and consent. Perceptions of data ownership and acknowledgement, trust, and policy frameworks influenced sharing practice, as did age, discipline, professional focus, and world region. Young researchers were less willing to share data; they were willing to share in circumstances where they were acknowledged. While there is a general consensus that increased data sharing in health is beneficial to the wider scientific community, substantial barriers remain. Systematic review registration PROSPERO CRD42018110559