by Chris McGivern & SF Team, 1 November 2019
Mad Price Ball’s fellowship focussed on Open Humans: a community-driven project enabling individuals to share their personal data with scientific studies and become active participants in research for the benefit of their own lives and communities. Over two years, they took an idea that enjoyed popularity but was struggling to survive and shaped it into an organisation with a bright and sustainable future. This is Mad’s fellowship story...
The opaque issues around privacy and security dominate the conversations we have around personal data today. In a world where faceless private interests and organisations collect vast swathes of information about your life, thoughts and desires - sometimes used to judge and discriminate - it’s no surprise there is a growing feeling of unease and a clamour for tighter regulation. Those who desire a safe and secure environment built around personal data may do so for noble reasons. But there are unintended consequences.
Locked up in walled gardens, health data beneficial to scientific research is only available to those who have access or those who can afford to buy it. Society misses out on an opportunity to advance knowledge, accelerate medical discoveries and change the world for the better. And the construction of barriers ignores the growing number of people who want their data to contribute to something bigger.
“Of course, there’s a lot of concern around privacy,” explains Mad. “But what’s interesting is that we are starting to think about our personal data as something of value, vacuumed up by all these companies. If it’s so valuable to them, why can’t we give our data to good actors? Or to a researcher that will advance science?
“There is an increasing altruistic component at work, here. I think people are just as interested in donating as they are with making five cents from their data, and there’s huge potential and a growing interest in seeing that data benefit society.”
Mad’s educational background is in biotechnology, with a specific interest in genetics. After achieving a Ph.D. in Biophysics from Harvard, they became a postdoc researcher at the George Church Laboratory in the university’s Medical School. It was here that an exciting opportunity arose to work at the Personal Genome Project (PGP), a global coalition of researchers and projects focussed on encouraging and empowering individuals to donate genomic data, traits and cells.
“George had this radical vision,” explains Mad. “Everyone could release genome and other health information to the public domain as research; essentially, open sourcing themselves. It challenged people to think about sharing data to benefit research.”
“It wasn’t for everyone - people typically consider personal information private. So I came out of that project determined to enable personal data sharing for the greater good in a format that would be more acceptable to more people.”
This more inclusive thinking formed the basis of Open Humans, which Mad created in 2015 alongside cofounder Jason Bobe. The big vision was inspired by the PGP approach of enabling individuals and communities to use their collective data and become active participants in research. Where it differed was offering privacy, choice and a broader perspective. Unconfined to collecting simply genetic and phenotypic data, Open Humans gave citizens granular choices to opt in or out of health and education research projects as they saw fit, in a private-by-default ecosystem. Imagine GDPR-like privacy settings developed for citizen science participants and you’ll be in the right ballpark.
It proved a popular concept. With press interest from the likes of Forbes, Newsweek and Scientific American, and significant grants from the Knight Foundation and Robert Johnson Foundation, Open Humans quickly built up a community of members - both contributors and researchers - numbering in the thousands. Initially, participants could join studies such as the American Gut project to investigate links between gut bacteria and disease, or GoViral to help plot the circulation of viruses during flu season. They could also share their data with the Harvard Genome Project to contribute to research linking DNA variants and health.
However, popularity does not equate to sustainability and while this is not an immediate issue when funds are available, problems become very real once the money dries up.
“It was headed for the rocks in a bad way,” recalls Mad. “It really sucked, because there were thousands in the community and a lot of potential for it in the long-term. You see this happening a lot. Someone builds a great pilot, doesn’t get funding, and the whole thing collapses.
“Because we were struggling to keep the project going, I was looking at getting a job outside of the nonprofit. Then - very randomly - someone retweeted a Shuttleworth Foundation link to me and said it would be up my alley.
“Open was already bouncing through my head and it already existed in what I was trying to create with Open Humans. It was very easy to drop in how open was involved with what I was trying to do - the Foundation seemed like a great fit.”
Mad became a Shuttleworth Fellow in March, 2017. The concept of an open approach to data gathering and human subjects research was still in its embryonic, experimental stages, but there was potential for Open Humans to shake up the traditional research pipeline and power structures. The promise to grant citizens with more control to use their data individually, share it with communities or offer it to researchers was relevant, timely and could provide a powerful benefit to society. Most importantly, after years working full-time in the background of the project, Mad had potential to take more of a leadership role and ensure its long-term survival.
“I cofounded Open Humans but wasn’t a decision maker or allowed to manage anyone,” says Mad. “It took the fellowship to convince the board I could lead and that, alone, was extremely valuable.”
“It was overwhelming at first. Everyone had left and I was trying to recruit and hire new people, which I’d never done before. There was a lot of learning all at once, especially because the project was already running and I was juggling everything. It felt like treading water - I think sometimes it can be harder to continue something than work with a brand new idea.”
“One of the best decisions I made was to find someone working in this space: Bastian Greshake Tzovaras. I had to set aside some fears to really reach out to someone and convince them to join as co-leader.”
While organisational issues slowed progress in the first year, Bastian’s arrival provided a valuable extra pair of hands and new insight, helping Mad grow the platform to support a broad range of different projects. Type 1 Diabetes patients from the Nightscout and Open Artificial Pancreas Data Commons communities could gather their data together and choose to share it with researchers seeking to improve and save lives. Open Humans also provided support to academic research related to connectivity at New York and Wellesley universities: the community shared genomic data that was previously unaffordable.
“Some research questions don’t warrant high spending on genetic data,” explains Mad. “But once you have it, you can ask new research questions. We had some projects that were created recently released by non academics - they are just citizen scientists who love playing with data - and one of them is called Amputation. It takes your data you might get from consumer services like 23Me, and it fills in the gaps of your genetics not revealed within the original test.
“Another idea was an open source family comparison tool. People can compare their genome against other family members genome and see which parts they share. Members can share stuff with each other without sharing identity so it provides more security - it just processes the data. I love these two especially because they are hobby projects written by citizens in the community.”
The Open Humans community has grown further over Mad’s fellowship, and that sense of community is a key aspect of its popularity: “We make it possible for everyone to connect and engage with each other in chat rooms. I just love watching people talk about a research project they are involved with and it’s not something that’s happened before: when you run a research project you never meet the other participants.
“It’s similar to the unusual way the Shuttleworth Foundation connects its fundees as a network. The same dynamic is possible because of the trust the Foundation places in us. We can talk to each other and it’s powerful because we learn from each other.
“The fellows are wonderful - a new set of people bringing the same sort of thinking and wanting to change the world in open ways. The Foundation provides an environment to make those friends and connections that I wouldn’t have made otherwise.
“It helps to get the support, affirmation and encouragement of the team on top of the funding itself - that belief I can take on an organisation and lead, and the help for me be the person who can do this. It’s the key difference between the Shuttleworth Foundation and other funders, who might say ‘here’s the money, but I’m skeptical so I’ll look over your shoulder and I want reports on xyz by abc.’ They don’t try to help you succeed in running the project because they expect you to do that already - it’s just ‘do it.’
During Mad’s two years as a fellow, they have changed the direction of the original Open Humans idea. Where the project struggled with commitment to a specific vision pre-fellowship, the opposite is true today. It has a real purpose, shifting thinking around what we measure as humans and how we can use those things in order to improve our everyday lives, while continuing to raise important questions around what individuals can do with ownership of - and access to - their own data. The financial outlook for the foreseeable future is also secure thanks to Bastian securing a three-year fellowship in Europe.
“There’s a sense this has grown beyond myself,” says Mad. “This could actually survive on its own, which is wonderful. Because we provide ways of research that can’t be done otherwise, we get a little something from operating research studies. It’s a growing component and although not enough to sustain all of our resource costs it’s good to finally have a long runway. It gives us a chance to get more attention and growth for the next few years and the hope is for Open Humans to reach critical mass. Our worst-case scenario is pretty damn good.”
The Foundation’s investment in the individual has also delivered a positive outcome. Not only is the project looking sustainable and strategically well-placed now, but Mad’s profile has grown, too. They have recently joined the board of a Finnish organisation called MyData, which looks at personal data rights in a similar vein to Open Humans.
“They have a global vision,” explains Mad. “They aren’t just talking about privacy - they are talking about portability and access, which are important values for us. It’s just one of the ways my work with Open Humans has translated and expanded.
“I will always see myself working towards the greater good in open data and health, and advancing these open approaches. And I hope to continue my relationship with the Shuttleworth Foundation - it’s so valuable to be a part of the fellowship community.”