We recommend FAIR principles be followed for sharing individuals' COVID-19 and health data. Many aspects of the principles could and should be followed immediately to support efforts to control the pandemic. FAIR principles can be supported by patient charters. However, changes to privacy regulation and oversight are required to robustly support a shift in responsibility for risk and trust to support good data practice among data custodians, individuals and organizations that receive patient data.
For too long we have let data remain in silos of individual data custodians, with unrealized benefits to the individual and society. Current data sharing approaches emphasize the responsibility of data custodians to protect individuals' data. Data custodians and application developers need to allow patients to access their own data and delegate access to their data, according to FAIR principles. Individuals should have the right to share their data with whom they wish.