Precision oncology is premised on large-scale, annotated 'omics data that improve our understanding of mutations, treatment response, resistance, quality of life and side effects, within an LHS. Associated concerns relate to control over data generation, sharing, and use; who benefits from these; equity of access; as well as concerns of privacy, security, and risk of re-identification. Such concerns may limit patient participation and trust, and slow the implementation of precision oncology initiatives.
To address these concerns, this research activity aims to:
- Engage with cancer patients and survivors to elicit preferences for data governance, patient control of data, and technology develop access to data using a mixed-method approach
- Develop a proof-of-concept SDSP using blockchain technology that protects patients’ interests in ‘omics data, while enabling their participation in LHS