Investigators searched PubMed (MEDLINE), Embase, Scopus, and Google Scholar from inception through 2019 for publications regarding patients’ and public views on the use of health data for research purposes. Studies conducted in Europe, the United States, Canada, Australia, and New Zealand were eligible for inclusion. Patients’ and public attitudes were extracted from eligible studies and categorized. Themes of interest included willingness to share data for research purposes, motivations to share data, perceived benefits of sharing data, perceived risks of sharing data, perceived barriers to sharing data, factors affecting data sharing, and conditions for sharing.
Overall, 27 papers were selected for review, including 12 quantitative studies, 8 qualitative studies, and 4 systematic reviews. Overall, studies suggested strong willingness to share data by patients and the public. Similar views on data sharing were observed across patient cohorts and the general public, including a desire to contribute to the “common good.” Perceived benefits of data sharing included improved patient care, improved diagnosis and treatment options, innovation and new treatment options, and better use of resources. However, although willingness to share data was high, both patients and the general public expressed concerns about confidentiality and inappropriate commercial use of data (eg, by insurance companies). Additional barriers to data sharing included lack of understanding of the purpose of sharing and lack of transparency on the part of institutions obtaining data. Patients were generally more likely to share if they were older and male. Studies agreed that willingness to share data was based on the following common factors: use by a study which reflected patients’ values, regulations that protect patient privacy, transparency regarding data use, public trust in the institution, and responsibility and accountability from data recipients.
These data suggest that although patients and the general public support data sharing, their willingness is conditional. Strict regulations regarding confidentiality, transparency, and accountability are necessary to maintain public trust in research. Of note, this review was limited to studies conducted in Western countries and countries of high socioeconomic status; further research is necessary to explore data sharing attitudes in other areas of the world. To improve public willingness to share data, investigators wrote, privacy, risk minimization, and data security “ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests.”
Kalkman S, van Delden J, Banerjee A, Tyl B, Mostert M, van Thiel G. Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence [published online November 12, 2019]. J Med Ethics. doi:10.1136/medethics-2019-105651