I am a Shuttleworth Fellow, dedicated to applying “open” principles to change how we share and study human health data. I combine advocacy and technology to explore new, participant-centered approaches for health data sharing, research, and citizen science. My work primarily occurs through Open Humans, a project I co-founded.
As part my fellowship, I am also independently funded. I retain an unpaid role as Director of Research of Open Humans Foundation, and am on the Board of Directors.
My work is multifaceted: I collaborate with diverse research teams and citizen scientists, perform outreach through writing and speaking, and continue to lead Open Humans technical development and operations.
Within Open Humans, I am also Principal Investigator of our Public Data Sharing study. In addition, I continue to serve as Director of Research for the Harvard Personal Genome Project and advise other research studies and projects.
About Open Humans
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, including:
- An “open cohort” approach
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.