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Data sharing in cancer research: A qualitative study exploring community members' preferences
Elizabeth A Johnston1,2,3, Xanthia E Bourdaniotis1, Susannah K Ayre1,2
1Cancer Council Queensland, Fortitude Valley, Queensland, Australia.
Cancer Medicine
|August 10, 2024
Summary
Cancer survivors and carers are willing to share health data for research. Key factors influencing consent include potential benefits, researcher transparency, data control, and privacy protections.
Area of Science:
- Oncology
- Health Informatics
- Patient Advocacy
Background:
- Cancer survivorship and treatment advancements depend on research participation and health record access.
- Community engagement is crucial for understanding patient perspectives on data sharing.
Purpose of the Study:
- To explore cancer survivors' and carers' preferences regarding health data access and sharing for research.
- To identify factors influencing willingness to consent to data sharing in cancer research.
Main Methods:
- Conducted 14 workshops with 42 community members, primarily cancer survivors or carers.
- Presented various data access and sharing scenarios for discussion.
- Analyzed participant preferences using descriptive and thematic analysis.
Main Results:
- 86% of participants were willing to share self-report data and current health records for specific research.
- 62% and 44% were willing to share current and future health records, respectively, with other researchers.
- Willingness was influenced by potential medical advancements, researcher transparency, data control, and privacy protocols.
Conclusions:
- Developed practical strategies to optimize data access and sharing in cancer research based on community preferences.
- Emphasized the importance of transparency, control, and privacy in facilitating data sharing for cancer research.
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