Health data governance by patients, for patients
The challenge
The Looper Community is a global, self-organised network of people living with diabetes. Frustrated by barriers imposed by commercial medical device companies which have historically restricted access to and transparency over patient data, members began connecting their own devices and sharing data directly. What started as a workaround has evolved into a thriving peer support network, where people co-develop and refine tools based on lived experience, reclaiming agency over their own health in the process.
That success, however, creates its own governance challenge. The community generates significant volumes of sensitive health data, and researchers and health systems are increasingly interested in using it. At present, there are no formal structures to govern how that data is used, shared, or protected. Without safeguards, there is a real risk that community-generated knowledge is co-opted without accountability, mirroring the very dynamic the community originally organised to push back against. An additional complexity is that the Looper community is not monolithic: members' motivations, regulatory contexts, and attitudes towards privacy and data sharing vary enormously. These tensions are aggravated by the rapid advancement of AI, which increases the potential for the automated, large-scale extraction of community data for commercial research and development without the community’s informed consent.
Our partner
The Looper Community represents a model of patient-led innovation that is increasingly relevant beyond diabetes, to any community that generates data collectively and wants to ensure it remains in their hands. To enable this work, we’re working closely in collaboration with Dr Mark Coté and Dr Sufyan Hussain whose expertise and deep ties with the looper community make them uniquely positioned to bridge research, clinical practice and drive patient-led data governance innovation.