Aim: Advancements in cancer treatment and survivorship rely on participation in research and access to health records. Yet, little is known about consumers’ preferences for how their data are used in cancer research and how studies could be designed to optimise data collection and sharing. This study explores community members’ preferences for use of their self-report data and health records in cancer research, and reasons underlying these preferences.
Methods: Fourteen workshops were conducted involving 42 community members, most of whom were a cancer survivor or caregiver. Various scenarios for data access and sharing were presented and discussed, with participants’ preferences summarised using descriptive statistics. Reasons underlying these preferences were identified through a thematic analysis of workshop transcripts.
Results: Most participants indicated a willingness for researchers to use their self-reported data and current health records for a specific research project (86%). Many were also willing to consent to their self-reported data and current (62%) or future (44%) heath records to be shared with other researchers for use in other studies if made aware of this. Willingness to consent to data access and sharing in cancer research was influenced by: (i) the potential for data sharing to advance medical knowledge and benefit people impacted by cancer in the future, (ii) transparency around researchers’ credibility and their intentions for data sharing, (iii) level of ownership and control over data sharing (particularly health records), and (iv) data sharing protocols for privacy and confidentiality.
Conclusions: These findings demonstrate community support for improved data access and sharing in cancer research, a priority for advancing cancer control. Incorporating community preferences into the design and conduct of cancer research studies has the potential to optimise community participation and the translation of research findings into practice.