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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.
Bryan took the opportunity to specifically address a challenge to the industry. “The hardware manufacturers have to become more open with their algorithms and tools,” he said. “We’re never going to get to the right place in this universe unless we work together in certain ways, in a competition mode.”
And take note all of you with a data access project: Lori specifically invited you to apply to the foundation for support, saying: “We have an open application process and we want to hear your ideas.”
Please get in touch with us if you’d like to participate in 2016. Space is limited.
Watch Bryan and Lori’s talk on Medium.
“We don’t regard our lead users as hackers or adversaries. Diabetes is our common enemy.”
Nate Heintzman is a member of the research and development team at Dexcom, makers of the leading continuous glucose monitor for people with diabetes. The Nightscout project of DIY liberation of CGM data specifically targets the Dexcom CGM. This could be perceived as a threat. But 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.
Watch Nate’s talk on Medium.
“Patients are doing experimentation every day just to live with their disease.”
Joyce Lee is a pediatric endocrinologist at the University of Michigan and a leader in developing methods of collaborative clinical research with patient communities. Her current focus is on learning from the participants in CGM in the Cloud, an online group that supports participants in a remarkable DIY data project called Nightscout. Nightscout and CGM in the Cloud help people flow their blood glucose data out of their monitors so they can do new things with it, such as set special alarms or share the data remotely with caregivers.
Here, Joyce describes why patients, and patient communities are leading the way in the development of new kinds of science, experimentation, and models of communicating knowledge.
Watch Joyce’s talk on Medium.
“Advocate for yourself. You should get to choose who you share your data with, who gets to see it, and if you want to donate it to research.”
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 in 2011. Like many parents of children with diabetes, Howard went from knowing almost nothing about the disease to having to help manage it every day. Diabetes, he came to realize, had a serious data problem. Most of this crucial, life-saving data was locked on devices that wouldn’t let patients effectively use it. In this talk, Howard describes the role of Tidepool and the larger challenge of opening up diabetes data.
Watch Howard’s talk on Medium.
From the Quantified Self Public Health Symposium
“I didn’t want to wait. I don’t want to die in my sleep. We are patients who are not waiting.”
Dana Lewis became a reluctant self-tracker at the age of 14 when she was diagnosed with type 1 diabetes. Dana 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, she describes the role that access to data plays in the DIY pancreas, with immediate and profoundly positive effects on her life.
Watch Dana’s talk on Medium.
“On the Fitbit, every single minute has a met value attached, every minute has an intensity score— all these different things from these little inexpensive friendly wearables are giving us amazing insights.”
Integrating consumer self-tracking tools into scientific and clinical workflows is harder than it looks. 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. After supporting nearly a hundred different studies, Aaron can talk with unique insight about what it takes to bridge the gap between the companies whose devices are on the wrists and in the pockets of consumers, and the researchers who are looking to make sense of it.
Watch Aaron’s talk on Medium.
“If I am able to take my data out of this place and share it with something that I find useful, I can actually unlock more value from the underlying source.”
Andrei Pop is the co-founder of Human API, whose purpose is to open the world of self-collected data to app developers, so they can build new experiences tied to the health and fitness questions people may have about themselves. Many of these apps built on top of Human API are for health care providers, but there are many other possible uses. In this talk, Andrei argues for “data liquidity” as the key to unlocking value for all stakeholders.
Watch Andrei’s talk on Medium.
How does data flow out of a specific device or app? Can we get a copy? Can we combine it with other data? The difficulty of moving and combining personal data has given rise to an entirely new layer in the health data ecosystem: the QS aggregator. Right now, most of these aggregators are focused on helping healthcare organizations and researchers combine data from various systems, but many questions remain about who controls these data flows and what purposes they can serve. In this short talk Drew Schiller the co-founder and CTO of Validic, a digital health data platform with many enterprise customers, talks about how personal data can be more accessible and useful to the individuals who collect it.
Watch Drew’s talk on Medium.
From the Quantified Self Public Health Symposium
“We are turning the evidence pyramid on its head. We think the single subject trial should be at the top of that pyramid.”
Dawn Lemanne, the founder of Oregon Integrative Oncology, is a pioneering clinician who brings powerful tools of patient involvement and self-assessment to evaluating treatment options. A widely respected researcher, she also organizes the Independent Metabolic Research Group (iMeRG) based in Southern Oregon, a group of over 40 licensed healthcare professionals who meet regularly to discuss their individual single-subject research studies. Here, Dawn describes some of the research her group is conducting, reflecting on what our future concepts of evidence may be when single subject research becomes more commonplace.
Watch Dawn’s talk on Medium.
From The Quantified Self Public Health Symposium
Mark Drangsholt is a clinician scientist with a PhD in epidemiology, but the story he tells in this short talk is about deciphering two different serious medical conditions through tracking and thinking about his own personal data.
“My main story today is not about my professional life. A key event happened here in San Diego about 13 years ago. I was at a research conference, and while sitting in the back of an auditorium just like this my heart rhythm went completely haywire. The thing that was most surprising was that instead of waving my arms and asking for help, I just slumped in my chair and greyed out, thinking this was the end. I thought I was dying.”
In the years since, Mark has developed pioneering methods of self-investigation to solve his own health issues, methods that he describes here with an explanation of how they drive more widespread health discovery.
Watch Mark’s talk on Medium.