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I am Executive Director and President of Open Humans Foundation and co-founder of Open Humans.
My work focuses on enabling people to access, use, and share their health and personal data toadvance individual understanding, collective empowerment, and research. This work primarily occurs through Open Humans and the associated nonprofit, Open Humans Foundation. Open Humans combines technology and community to advance an open and participant-centric approach to human subjects research. By working with the individuals who are contributing toresearch, we can enable new ways to share data and new approaches to doing science. My work also extends to related areas in N-of-1 and participant-led research, open science, and advocacy.
More about me:
- Current resume
- From Personal Data to Collective Power (talk & transcript)
- About me and my vision (written when I became Executive Director)
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Open Humans is a nonprofit project that combines technology and community to advance an open and participant-centric approach to human subjects research. By working with the individuals who are contributing to research, we can enable new ways to share data and new approaches to doing science.
Open Humans is a program of the Open Humans Foundation, a 501(c)(3) nonprofit organization dedicated to making a wide spectrum of data about humans accessible to increase biological literacy and improve human health.
Open Humans enables diverse new approaches to research and more, including:
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where individuals join multiple studies, and can share data between them. - Giving data to participants
so they can explore their own data – and choose when to share with others. - External data sources
enabling volunteers to initiate new data streams. - Citizen-led projects
that work with members and their data, e.g. data commons, data exploration, and citizen science.