Archived livestream footage from the 2016 Quantified Self Public Health Symposium hosted in San Diego, an annual event bringing together toolmakers and public health researchers to support new discoveries about our health and the health of our communities grounded in accurate self-observation.
In this final talk from the QS Public Health Symposium, we asked two leading advocates for a culture of health to help set an agenda for our movement over the next year. Bryan Sivak is the former CTO of the US Department of Health and Human Services, and Lori Melichar is a director at the Robert Wood Johnson Foundation.
Nate Heintzman is a member of the research and development team at Dexcom, makers of the leading continuous glucose monitor for people with diabetes. In this talk, Nate explains why Dexcom has decided to treat its lead users as collaborators, even when their ingenuity, advocacy and inspiring impatience leads them to step beyond regulatory and business frontiers.
Joyce Lee is a pediatric endocrinologist at the University of Michigan and a leader in developing methods of collaborative clinical research with patient communities. In this talk from QSPH15, Joyce describes why patients are leading the way in developing new kinds of science, experimentation, and models of communicating knowledge based on her experience working with CGM in the Cloud, an online group supporting the DIY data project Nightscout.
Howard Look is the founder and CEO of Tidepool.org, a non-profit open source effort to build better software for diabetes. He became a leading advocate for access after his daughter was diagnosed with type 1 diabetes and discovering how crucial data was being locked away in devices for managing the condition. In this talk from QSPH15, Howard describes the role of Tidepool and the larger challenge of opening up diabetes data.
Dana Lewis and her partner Scott Leibrand have been developing a DIY artificial pancreas that is built on top of the data flows from Dana’s continuous glucose monitor. In this talk from QSPH15, Dana describes the role that access to data plays in the DIY pancreas, which has had immediate and profoundly positive effects on her life.
Aaron Coleman has built his entire company, Fitabase, around the needs of researchers to authorize and integrate physical activity data from trackers like the Fitbit. In this talk from QSPH15, Aaron discusses what it takes to bridge the gap between the companies designing the devices generating health data and the researchers looking to make sense of it.
Andrei Pop is the co-founder of Human API, a platform for opening the world of self-collected data to health app developers. In this talk from QSHP15, Andrei argues for “data liquidity,” or democratizing health data sharing, as the key to unlocking value for all stakeholders.
Dawn Lemanne is the founder of Oregon Integrative Oncology and leads the Independent Metabolic Research Group (iMeRG), a collaboration of licensed health professionals researching the effect of inexpensive lifestyle changes on managing chronic disease, using themselves as subjects. In this talk from QSPH15, Dawn discusses how the future of medical research may benefit from these kinds of single-subject trials.
Mark Drangsholt is a clinician scientist with a PhD in epidemiology who began self-tracking to gain insight into the sudden onset of episodes of irregular heartbeat, later diagnosed as atrial fibrillation (AF). In the years since, Mark has developed pioneering methods of self-investigation to solve his own health issues, which he describes in this talk from QSPH15 while explaining how these methods can drive advances in health discovery.
Brian Levine is the co-founder of Tap2, the creator of the app younlocked. This tool helps users collect self-report data by asking questions during the phone unlocking process, a method that led Brian to answering almost 10,000 questions in a six-month period. In this talk from QSPH15, Brian shares details about his rich data set and the collection method that could become the foundation for many new personal and public health discoveries.
In this discussion from QSPH15, Susannah Fox, the CTO of the U.S. Department of Health and Human Services, interviews cognitive scientist Don Norman, the author of the best-selling book The Design of Everyday Things, on how to bring human-centered design into public health.
Madeleine Ball, is the Director of Research for the Harvard Personal Genomes Project and co-founder of Open Humans, a platform and community that enables individuals to connect their personal data with research and citizen science. In this talk from QSPH15, Madeleine discusses the value of creating a new relationship between participants and scientists in which with both sides communicate, negotiate, and share responsibility over data.
Bob Evans is the lead developer of PACO, an open source tool for supporting individual discovery and large scale participatory research. What began as a personal project to gauge his work experience by randomly querying himself throughout the day, PACO has grown into a platform for experimentation used in over one thousand projects designed by researchers, companies, and individuals. In this talk from QSPH15, Bob discusses how the individual quest for self-discovery connects with large scale research.
Heidi Dohse is “professional heart patient,” dedicated to bringing patient voices into the research environment as a member of the steering committee for the Health eHeart Alliance. In this talk from QSPH15, Heidi explains how the Health eHeart Alliance works as a valuable resource for humanizing the research process and tapping knowledge from the lived experience of patients to inform advances in healthcare.
Michael Kellen is the Director of Technology at Sage Bionetworks, who was closely involved in the development of two of the apps that launched with Apple’s Research Kit: The Parkinson Disease mPower app and Share the Journey, a breast cancer survivors research app. In this talk from QSPH15, Michael explains what was involved in opening up a platform for large-scale research participation.
Today the New York Times published a fantastic story by Peter Andrey Smith about the Nightscout and OpenAPS projects: A Do-It-Yourself Revolution in Diabetes Care. People with diabetes and parents of kids with diabetes are self-tracking by necessity, and we’ve learned a lot from their talks about their projects at QS meetings and conferences. Their impact is…
At the Little Device Lab at MIT, Jose Gomez-Marquez and his colleagues focus on bringing the ingenuity of the maker movement to the world of health and healthcare. In this talk from QSPH15, Jose uses specific examples from a new course at MIT to explain the idea of “transparent boxes” — systems and technologies that allow individuals to be creative in their exploration of themselves through data.
Dawn Nafus, is an anthropologist at Intel Labs who has written with great clarity about the Quantified Self movement. In this talk from QSPH15, Dawn explores the concept of data access and literacy in terms of who gets to ask the questions that direct research.
Stephen Downs, Chief Technology and Information Officer at the Robert Wood Johnson Foundation, looks forward to the day when healthy choices are easy choices. That day may not be tomorrow, but identifying the early adopters, innovative thinkers, and technological disruptors can move us closer to that healthier world. In this talk from QSPH15, Stephen explains why the foundation decided to support the Quantified Self movement.
