Being a Mozilla Science Fellow
A lot of my current focus revolves around understanding and solving the problem I call the Participation Paradox: Health is highly valued by many, yet very few people actually participate in organized health research. Why?
For years, I’ve been nibbling around the edges of this idea that the world really needs “bioscience producers” in order to reach more people and take human research to the next level. The fellowship gave me some of the time, space and funding to begin to explore this in more depth, and for that I am most grateful!
I believe a bioscience producer is a person who can help solve this riddle by taking the design of research beyond a focus on “good science” and incorporating additional important elements from several categories, including: (2) governance (3) operations – tools, platforms, people (4) engagement and (5) sustainability.
One challenge in designing better research studies is understanding the current state-of-the-art. Lots of great work has been done, but often in a manner that is very opaque. Consent forms are not always available online and protocols almost never are. So, trying to pop-the-hood on an existing study in the search for innovative practices is mostly impossible without personal interactions with the research teams running those studies. Luckily, I co-organize an event called GET Labs that brings together many leading research teams of the open persuasion who are also interested in some of the same issues. Through this community, I got a chance to get feedback and help on a new project that examines sharing patterns in biomedical research studies.
As an advocate for open science, it is important to educate and work with policymakers about what this means and why it is important. Being a fellow helped me find more time to engage than I otherwise would have.
What a critical time to be engaged too! Through the Obama administration’s Precision Medicine Initiative and Cancer Moonshot, there is suddenly a lot more people with interest in thinking through how to design research studies that are able to engage millions of people, to empower experts and citizen scientists from diverse backgrounds to make contributions, and to create shared data resources that, taken all together, fuel discoveries that will power the next generation of health care. These are issues I’ve worked on in several research communities, including DIYbio, Personal Genome Project, Open Humans, and most recently, the Resilience Project.
One of the aspects of the fellowship that really worked for me was exposure to a diverse set of people working outside of my primary domain of biomedical research. Getting fresh perspectives, learning how other people perceive the things I’m close to (at times, too close), and getting regular exposure to how others think and work, the tools they use and the people they interact with. Yay for weekly fellows meetings. Also yay for learning how to use github to advance my work, speaking as someone who doesn’t write code for living. Life is just better when you’ve got a group of people who want to help out and throw you high fives along the way :)