Mad Ball

Opening human health data


Mad Ball

Project: Open Humans

The goal of this project is to enable individuals to access and share health data with researchers and citizen scientists.

“What 'open' means to me...'open source' was first called 'free software' - free as in freedom, with a legal tool to protect it. It was about empowering individuals and communities around what they create. Our data should empower us.”

The Big Idea


Shared health data is invaluable to medical research. However, risks around privacy, security and discrimination motivate a siloed approach to data gathering. Mad’s work focuses on decentralising control and power over health data to empower contributors whilst advancing research.

The Open Humans Project is 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.

Why We Funded


We support Mad because Open Humans 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 learn enough to help us think of the next steps.

Mad’s work focuses on:

  • Advancing research by empowering contributors
  • Developing open approaches to human subjects research
  • Enabling contributors, individuals and communities to access, explore and study their own data

Funding Breakdown


People
Marketing
Software
Travel
Infrastructure
Training
Office space
Legal

2017

Fellow contribution: $7,625.00
Our contribution: $161,250.00
Total funds: $168,875.00

2018

Fellow contribution: $4,897.73
Our contribution: $92,727.27
Total funds: $97,625.00
Total funding to date:
$266,500.00

Flash Grants


Female
Egle Marija Ramanauskaite
crowd2map.wordpress.com/a...
Female
Dana Lewis
openaps.org/