Shared health data can be invaluable to medical research. However, risks around privacy, security and discrimination contribute to maintaining a siloed approach to data gathering. Mad’s work focuses on decentralising control and power over health data to empower contributors whilst advancing research. They are developing an open approach to human subjects research, with a particular focus on genetic research. This approach will enable research participants, individually and as a community, to access and explore their own data. They can manage and share this data, generated by any study, openly with new projects. The right to choose whether and how to share their data turns subjects into active participants.
We support Mad because they ask the right questions and are bravely seeking the answers. At the moment there are many more questions than answers for us in this field. How will this work technically? Can it work socially? What impact will the research findings have on individuals and on society? Most of these questions will not be answered over the next year. Mad will however explore, experiment and in doing so learn enough to help us think of the next steps.
Twice a year we award a number of small grants to a collection of social change agents, no strings attached, in support of their work. We call these Flash Grants and recipients are selected based on nominations from our Fellows. Each award is worth $5,000.
At the heart of our co-investment fellowship model is the principle that Fellows continue to invest in their own ideas. The Foundation amplifies the Fellow’s investment by matching it at least tenfold, along with covering the cost of their time for the year.
The figures you see here do not reflect each Fellow’s fellowship year funding, but rather the funds unlocked within our financial year, as the fellowship years start either March or September and Fellows are not required to spend the available funds proportionately throughout the year.