Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis
Quita Olsen, Amalie Dyda, Leanna Woods, Elton H. Lobo, Rebekah Eden, Michelle Krahe, Bernadette Richards, Nalini Pather, Lesley McGee, Clair Sullivan, Jason D. Pole
Abstract
Healthcare delivery is under strain, and the reusing of routinely collected data promises improved outcomes. Still, concerns remain about the public's willingness to share their health data. This study examines worldwide willingness to share health data for secondary purposes. Five electronic databases were searched for eligible studies published since January 2020. Articles were included if they quantitatively examined the primary outcome; the public's willingness to share health data for secondary use, while secondary outcomes included demographic and perception measures associated with willingness to share. Sixty-five articles reported a wide range (24-100%) of public willingness to share resulting in a pooled estimate of 77% (95% CI: 71-82%) among predominantly high-income countries. Participants remain concerned about privacy, consent, and transparency. Future work should consider public education, assessing diverse populations and developing and deploying a validated tool measuring willingness to share data.