OBJECTIVES: The generation of robust evidence informing cancer prevention and treatment is premised on availability of patient-level data. Canadian policies and infrastructure limit cross-jurisdictional data sharing. Alongside efforts to enable greater access and use of patient data, understanding preferences for participation in such initiatives is critical. This qualitative investigation sought to elicit patient values, expectations, and concerns for enhancing pan-Canadian data sharing for precision oncology research.

METHODS: We conducted virtual focus groups with adults living in Canada, with a diagnosis of cancer. Participants were recruited through online patient and community platforms and oncology clinics. Prior to each session, participants were provided a brief video introducing precision oncology and secured data sharing. De-identified transcripts were analysed using thematic analysis by three qualitative analysts. Following preliminary analysis of each focus group, a member checking survey was circulated to participants for critical feedback.

RESULTS: Participants were recruited between December 2022 and November 2023, with 4 focus groups completed (n=22 participants). Following member checking feedback integration, we identified 3 major themes and 8 sub-themes. Participants were supportive of enhanced data sharing while protecting patient privacy. Patients highlighted data misuse as a primary concern to be mitigated through appropriate data governance, oversight, and transparent consent procedures. The potential for incentivising participation generated highly polarized opinions across focus groups.

CONCLUSIONS: Our work addresses a timely need to determine willingness to contribute to secured data sharing initiatives, such as those under consideration by Canada’s Terry Fox Marathon of Hope Cancer Centres Network. Motivated by community benefit, participants supported efforts to generate better evidence for precision oncology. As part of the Canadian Network for Learning Healthcare Systems and Cost Effective ‘Omics Innovation, results are informing the development of a secured data sharing platform and a pan-Canadian discrete choice experiment to estimate preference-based utility values for cross-jurisdictional data sharing.