Executive director of Open Humans Foundation
Can we empower ourselves collectively – from individuals to communities? Vignettes from Open Humans and reflections on the power of peer production.
Mad Price Ball, PhD, is Executive Director of Open Humans Foundation. Ball combines advocacy and technology to explore new, participant-centered approaches for health and personal data sharing, research, and citizen science.
Open Humans is a nonprofit project that combines technology and community to advance an open and individual-centered approach to human subjects research, citizen science, and personal data. It is an active community being used by patient groups, citizen scientists, and researchers, with an open ecosystem of tools for data access, aggregation, and exploration, and enables members to both collect and contribute personal data to diverse academic and citizen science projects.
Examples of Open Humans in action include: exploration and donation of imported genetic data, aggregation and research of continuous glucose monitor data by type 1 diabetes patient communities, and personal data import and analysis tools for step counts, weight, social media, and GPS data.
Open Humans was co-founded by Ball in 2015, and has been supported by grants from the Robert Wood Johnson Foundation, the John S. and James L. Knight Foundation, and by Ball’s Shuttleworth Foundation Fellowship, which supports their vision for applying free principles to change how we share and study human health and personal data.
Much of personal data is fundamentally social in nature – it is not tied to one individual, but rather to many people. Data is also communication and signaling, it is shared between many. The collective production and use of data create technical and social challenges what may be missed in the discussions if we speak […]