A systematic literature review of health consumer attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on privacy, trust, and transparency

Abstract

We aimed to synthesise data on issues related to stakeholder perceptions of privacy, trust, and transparency in use of secondary data. A systematic literature review of healthcare consumer attitudes towards the secondary use and sharing of health administrative and clinical trial data was conducted. EMBASE/MEDLINE, Cochrane Library, PubMed, CINAHL, Informit Health Collection, PROSPERO Database of Systematic Reviews, PsycINFO, and ProQuest databases were searched. 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. One author screened articles for eligibility, and two authors were involved in the full text review process. Data was extracted using a pre-piloted data extraction template by one author and checked by another. Conflicts were resolved by consensus. Quality and bias were assessed using the QualSyst criteria for qualitative and quantitative studies. This paper focuses on a subset of 35 articles identified from the wider search which focus on issues of privacy, trust, and transparency. Studies included a total of 56,365 respondents. Results of this systematic literature review indicate that while respondents identified advantages in sharing health data, concerns relating to trust, transparency, and privacy remain. Organisations collecting health data and those who seek to share data or undertake secondary data analysis should continue to develop trust, transparency, and privacy with healthcare consumers through open dialogue and education. Consideration should be given to these issues at all stages of data collection including the conception, design, and implementation phases. While individuals understand the benefits of health data sharing for research purposes, ensuring a balance between public benefit and individual privacy is essential. Researchers and those undertaking secondary data analysis need to be cognisant of these key issues at all stages of their research. Systematic review registration: PROSPERO registration number CRD42018110559 (update June 2020).

A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent

“…The protocol was prospectively registered on PROSPERO ( www.crd.york.ac.uk/PROSPERO , CRD42018110559, updated June 2020). Given the substantial number of articles identified in our larger search, we have focused on specific issues over three articles; results relating to the attitudes of health researchers and issues relating to privacy, trust and transparency have been reported in other publications [ 9 , 10 ].…”

“…Several articles discuss the relationship between trust, transparency, privacy and consent, and quality, and these issues are explored at length in a subsequent publication [ 9 ]. Other influences on consent included health literacy and government insurance status [ 18 ], or requesting a national identity number [ 41 ].…”

Digital health and precision prevention: shifting from disease-centred care to consumer-centred health

“…Consumers understand the benefits of secondary use of health data if a balance between individual privacy and public benefit is maintained. 19 We hypothesise that the COVID-19 pandemic may contribute to slowly dissolving public fear around secondary data usage in coming years. Trust, transparency, open public dialogue, consumer feedback loops and robust policies are crucial.…”

Research integrity in clinical trials: innocent errors and spin versus scientific misconduct

“…The International Committee of Medical Journal Editors (ICMJE) is promoting the ethical obligation to responsibly share data generated by RCTs. Despite the positive consensus among stakeholders that data should be shared, there is no agreement on how much and how data should be shared [58,59 & ,…”