Policy Preferences Regarding Health Data Sharing Among Patients With Cancer: Public Deliberations.
Minakshi RajKerry A RyanPhilip Sahr AmaraPaige NongKaren CalhounM Grace TrinidadDaniel B ThielKayte Spector-BagdadyRaymond Gene De VriesSharon L R KardiaJodyn E PlattPublished in: JMIR cancer (2023)
Our study suggests the need for increased disclosure of health information sharing practices. Describing health data sharing practices through patient portals or other mechanisms personalized to patient preferences would minimize the concerns expressed by patients about the extent of data sharing that occurs without their knowledge. Future research and policies should identify ways to increase patient control over health data sharing without reducing the societal benefits of data sharing.