Community views on the secondary use of general practice data: Findings from a mixed-methods study

Area of Science:

• Health Services Research
• Public Health Policy
• Data Governance

Background:

• General practice data is increasingly utilized for quality assurance, service planning, and research.
• Data linkage combines general practice records with hospital and other health service data.
• Understanding community views is crucial for developing a social license for secondary data use.

Purpose of the Study:

• To explore community perspectives on sharing general practice data for secondary purposes.
• To identify concerns and conditions necessary for public acceptance of data sharing.
• To inform the development of a social license supporting the use of general practice data.

Main Methods:

• A mixed-methods approach was employed, combining focus groups and a cross-sectional survey.
• Focus groups were conducted in November-December 2021.
• A cross-sectional survey was administered in March-April 2022 with 2604 participants.

Main Results:

• Strong public support exists for sharing general practice data for direct patient care (over 90%).
• Lower support was observed for secondary uses like research (36%) and health service planning (45%).
• Concerns include privacy breaches, discrimination, data misuse, and a desire for transparency and consent.

Conclusions:

• Public concern regarding secondary sharing of general practice data may exceed that of other settings.
• Building trust and legitimacy in general practice is essential for broader data sharing.
• Careful attention to patient and public concerns is required to sustain social license for data use.