MSIS, Associate Professor, Icahn School of Medicine at Mount Sinai
Jason Bobe directs the Resilience Project, an effort to learn how some people are able avoid disease despite having significant risk factors. He is primarily concerned with producing research efforts that people actually want to join. He believes we’ll never solve our health challenges unless we figure out how to make research a common cultural activity. So, he works on prototyping collaborative and participatory models of biomedical research and citizen science. With a focus on (a) greatly expanding the rates of participation in organized health research, (b) broadening the types of contributions participants in research are able to make, (c) promoting discovery & engagement through participant-centered research design, and (d) building research networks and communities of practice around emerging technologies. He is Associate Professor and Director of Democratized Health Innovation at the Institute for Next Generation Healthcare (INGH) at the Mount Sinai School of Medicine. He is co-founder of DIYbio.org, OpenHumans.org, and PersonalGenomes.org.
Session Abstract – PMWC 2019 Silicon Valley
Session Synopsis: With the increase of DNA sequencing, we see a rise in data accumulation and a greater need for correlation with clinical information and patient reported outcomes. Unfortunately, most of that data is siloed. Recognizing that individuals should control their data and incentivizing them to contribute it to research requires a new paradigm. This session will focus on different approaches of secure data sharing via new, next generation technologies and trusted systems that also reward individuals to share their data.