Policy Preferences Regarding Health Data Sharing Among Patients With Cancer: Public Deliberations.

Area of Science:

• Precision Health
• Health Informatics
• Patient Engagement

Background:

• Precision health aims to personalize clinical care through data-driven approaches.
• Current health data sharing infrastructures often neglect patient values and preferences.
• This study addresses the gap in patient engagement in health information governance.

Purpose of the Study:

• To understand patient policy preferences on health information sharing in exchange and commercial contexts.
• To identify values, risks, and benefits influencing patient decisions on data sharing.
• To inform policy development for patient-centered health data governance.

Main Methods:

• Conducted two public deliberations with 61 cancer patients (current and former).
• Utilized pre- and post-deliberation surveys to capture policy preferences.
• Facilitated discussions on various data sharing mechanisms like patient portals and opt-out options.

Main Results:

• Patient portals were ranked as the most preferred policy for health information sharing.
• Patients expressed significant concerns regarding lack of transparency, awareness, and control over data use.
• The status quo was the least preferred option due to insufficient patient oversight.

Conclusions:

• Increased disclosure of health information sharing practices is crucial.
• Personalized mechanisms, such as patient portals, can enhance transparency and patient control.
• Future policies should balance patient autonomy with the societal benefits of data sharing.