Topic Archives: Uncategorized

Giving You a Choice by Howard Look

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From the Quantified Self Public Health Symposium

“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.

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#WeAreNotWaiting by Dana Lewis

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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.

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Bridging the Gap by Aaron Coleman

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From the Quantified Self Public Health Symposium

“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.

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Sharing Self-Collected Data by Andrei Pop

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From the Quantified Self Public Health Symposium

“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.

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Making Health Data Accessible and Actionable by Drew Schiller

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From the Quantified Self Public Health Symposium

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.

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A New Type of Evidence by Dawn Lemmane

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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.

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Learning from my N of 1 by Mark Drangsholt

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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.

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Asking Myself 10,000 Questions by Brian Levine

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From The Quantified Self Public Health Symposium

How do you study yourself when you’re not looking? Brian Levine is the co-founder of Tap2, the creator of younlocked, a unique self-assessment tool that helps individuals collect self-report data by asking questions during the phone unlocking process. By answering almost 10,000 questions during a six-month period Brian was able to find out: “Why am I so tired, and why can’t I be in a better mood?” By connecting self-assessment to the phone unlocking gesture, which is performed many times a day, Brian created a novel form of self-observation. In this short talk Brian shares some details about his rich self-collected data set that, as well as a method that, if widely adopted, could be the foundation for many new personal and public health discoveries.

Watch Brian’s video on Medium.

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Solving the Right Problem by Susannah Fox and Don Norman

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From the Quantified Self Public Health Symposium

The cognitive scientist Don Norman is one of the world’s most influential design theorists. His best-selling book, The Design of Everyday Things, has been in print for twenty-five years and is widely recognized as a classic. He is currently the director of The Design Lab at University of California, San Diego.

Here he talks with Susannah Fox, who was at the time of their conversation an entrepreneur-in-residence at the Robert Wood Johnson Foundation. (Today Susannah is the CTO at the US Department of Health And Human Services.) Susannah begins by asking Don about his idea that the first job of design is the solve the right problem. How do you know the problem you’ve chosen is the right one?

“In Human-Centered Design,” Don answers, “when we’re asked to solve the problem the rule is no, don’t solve the problem. Ask, why is that the problem? Why do you need this? What is this problem about?”

Watch Susannah and Don’s talk on Medium.

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Opening Up Access by Madeleine Ball

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From the Quantified Self Public Health Symposium

The Open Humans project is one of the most radical data access efforts underway today, both exemplifying new modes of access and also revealing, by contrast with conventional research and data protection systems, how much work remains to be done in our field. Madeleine Ball, co-founder of Open Humans and Director of Research for the Harvard Personal Genomes Project explains that the main premise of Open Humans is centered on the idea that researchers should freely share data from their studies back to the participants; and that participants should be able to use a well-designed, convenient, open platform to donate their data to science without de-identification. Because Open Humans is not premised on anonymized data, it is driving toward a new relationship between participants and scientists in which with both sides have names, and must communicate, negotiate, and share responsibility. “It’s more interesting than simply allowing broad sharing of identifiable data, because it enables ongoing connections around that data so new researchers can work with that person.”

Watch Madeleine’s video on Medium.

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