Investigating the Extent to Which Patients Should Control Access to Patient Records for Research: A Deliberative...

Area of Science:

• Public Health
• Bioethics
• Health Policy

Background:

• Secondary use of health data for research presents significant privacy and governance challenges.
• Traditional opinion polling is inadequate for addressing complex issues like health data usage.
• Deliberative processes are crucial for informed citizen engagement on health data governance.

Purpose of the Study:

• To understand informed citizen preferences for control over health records used in research.
• To extend knowledge on public views following a deliberative process using citizens' juries.
• To explore the balance between individual privacy and public benefit in health data sharing.

Main Methods:

• Convened two 3-day citizens' juries (17 participants each) reflecting UK demographics.
• Jurors engaged with expert witnesses and deliberated on patient control over secondary health data use.
• Utilized questionnaires and voting to capture juror opinions before and after deliberation.

Main Results:

• 33 out of 34 jurors supported secondary use of health data for research.
• A majority (24/34) favored an opt-out consent model, while others preferred opt-in or no consent.
• Deliberation led to increased willingness among jurors to support wider health data sharing for public benefit.

Conclusions:

• Informed citizens prioritize public benefit from research over absolute privacy, provided risks and opportunities are understood.
• Citizens advocate for notification and the right to opt out of health data sharing schemes.
• Increased information significantly influences public opinion on health data sharing, reducing skepticism.