Topic Archives: Uncategorized

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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Make Advanced Self-Measurement More Accessible by Bob Evans

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From the Quantified Self Public Health Symposium

Why can’t everybody use advanced analytics to understand themselves? Bob Evans is the lead developer of PACO, an open source tool for supporting both individual discovery and large scale participatory research. Bob originally designed PACO as a personal project to get a better handle on how he felt at work by querying himself at random times during the day, a method known as “experience sampling.” PACO has grown and developed over time into a platform for experimentation used in over one thousand projects designed by researchers, companies, and individuals. Here, Bob shares some of his lessons about how and where the individual quest for self-discovery connects with large scale research. “The goal is to make it easier for researchers and individuals to experience their own lives, be scientists, and make their own experiments at will. The long tail of questions that people want to ask is very, very long.”

Watch Bob’s video on Medium.

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The Patient Voice by Heidi Dohse

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From the Quantified Self Public Health Symposium

Heidi Dohse has been a heart patient since 1983. As someone living with a pacemaker, “one of the best quantified self devices,” she’s deeply interested in understanding how patient-generated data can play a role in improving the treatment and diagnosis of heart conditions. And as a member of the steering committee of the Health eHeart Alliance, she’s intimately involved with bringing not only patient data but the patient voice into the research environment through the Health eHeart Study. Currently, there are over 20,000 patients signed up to share their data with the study. “It’s not quite a million yet, but we’re going to get there.”

Watch Heidi’s video on Medium.

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Friends in High Places

Can’t resist just posting this photo from our friend Dana Lewis, taken today at the White House. She’s holding up her DIY artificial pancreas system as her fellow #wearenotwaiting activist Howard Look talks data access with – yes, that’s him – President Barack Obama.

 

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For more on Dana, Howard, and the movement to build a new ecosystem for diabetes care, see the links below:

Diabetes Data for All: Interview with Howard Look

DIY Diabetes: Interview with Dana Lewis and Scott Leibrand

Explaining Nightscout by Lane Desborough

 

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Participants at the Center by Michael Kellen

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From the Public Health Symposium

The promise of Apple’s Research Kit is that everybody can contribute to medical research. But what does this really mean? Michael Kellen is the Director of Technology at Sage Bionetworks, and was closely involved in the development of two of the four research apps that launched with Research Kit: The Parkinson Disease mPower app and Share the Journey, a breast cancer survivors research app. We asked Michael to give us early word about what was involved in opening up a platform for large-scale research participation.

Watch Michael’s talk on Medium.

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