Stakeholders' perceptions of personal health data sharing: A scoping review.

Abstract

The rapid advancement of digital health technologies has heightened demand for health data for secondary uses, highlighting the importance of understanding global perspectives on personal information sharing. This article examines stakeholder perceptions and attitudes toward the use of personal health data to improve personalized treatments, interventions, and research. It also identifies barriers and facilitators in health data sharing and pinpoints gaps in current research, aiming to inform ethical practices in healthcare settings that utilize digital technologies. We conducted a scoping review of peer reviewed empirical studies based on data pertaining to perceptions and attitudes towards sharing personal health data. The authors searched three electronic databases-Embase, MEDLINE, and Web of Science-for articles published (2015-2023), using terms relating to health data and perceptions. Thirty-nine articles met the inclusion criteria with sample size ranging from 14 to 29,275. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines for the design and analysis of this study. We synthesized the included articles using narrative analysis. The review captured multiple stakeholder perspectives with an up-to-date range of diverse barriers and facilitators that impact data-sharing behavior. The included studies were primarily cross-sectional and geographically concentrated in high-income settings; often overlooking diverse demographics and broader global health challenges. Most of the included studies were based within North America and Western Europe, with the United States (n = 8) and the United Kingdom (n = 7) representing the most studied countries. Many reviewed studies were published in 2022 (n = 11) and used quantitative methods (n = 23). Twenty-nine studies examined the perspectives of patients and the public while six looked at healthcare professionals, researchers, and experts. Many of the studies we reviewed reported overall positive attitudes about data sharing with variations around sociodemographic factors, motivations for sharing data, type and recipient of data being shared, consent preference, and trust.