Quantified Self Podcast

Do wearables and other self-tracking tools lead to better health outcomes? It’s plausible that they would. At a very basic level: when you have a problem, it often helps to think about it. Empirical observation is one of our most powerful tools for thinking. Now that we can measure a wide range of health-related metrics at home, store the records in a convenient way on our computers, and use widely accessible tools to analyze the data, shouldn’t we see some results?

We are now nearly a decade out from a trial run by researchers at Memorial Sloan Kettering that tested the efficacy of supporting cancer patients in self-tracking their own symptoms. The self-trackers lived longer compared to the control group. Eric Topol’s comment on the paper expressed the hope many of us had that the results would open the gates of healthcare support for patients to leverage their own observational and reasoning capacity in collaboration with their clinicians:

Most important, this trial emphasizes the role of engaging patients in tracking their symptoms and of generating their own data. Patients have long been neglected for having a more active role in their care, when in fact, given the appropriate tools, they represent true “blockbuster” potential for improving their outcomes.

But these results did not really hold up over time and across conditions. The most disappointing next beat in the story was the PREEMPT study run by Richard Kravitz at UC Davis, which randomized more than 200 chronic pain patients into a control group and an n-of-1 trial group who were supported in evaluating their treatments. There was no difference between the groups in the primary outcome of “pain interference.”

I’ve read most of the papers I could find comparing self-tracking to normal care, and I won’t go through it all here. But I think any fair reading of the health outcomes research would give the same verdict: Maybe? There’s a genuine lack of clarity despite very serious effort.

In this episode of the Quantified Self Podcast, I discuss this with the Personal Science Research Group. What’s the story of outcomes? We strongly believe, based on our own experience supporting people with complex health challenges, that self-tracking can help clarify a personal situation, reason about treatment options, and come up with new and better ideas about the next thing to do. But shouldn’t the effects show up in outcomes?

Joining me: Sara Riggare, Uppsala University; Thomas Blomseth Christiansen, cofounder of TOTTI Labs; Martijn de Groot, Radboud University Medical Center; and Steven Jonas, editor and information architect at Quantified Self.

Links:

Personal Science Research Group

QS Show & Tell archive

The book

Martijn de Groot has had tics since he was a child. Mostly, he suppressed them and they were rarely noticed. A few years ago, concerned that they might be getting worse, he started tracking them by pressing a small one-button tracker in his pocket that recorded a timestamp when a tic came. The first months of data surprised him. He had many more tics than he thought. After consulting with his primary doctor, who referred him to a specialist, he was diagnosed with Tourette’s syndrome. This came as a shock. In this podcast about a Show & Tell talk which appears in The Quantified Self: Learning to Observe, Martijn discusses some of the most interesting things he learned from making 5,933 observations over 330 days: before, during, and after therapy for Tourette’s syndrome.

Joining me: Martijn de Groot, Radboud University Medical Center; Sara Riggare, Uppsala University; Thomas Blomseth Christiansen, cofounder of TOTTI Labs; and Jakob Eg Larsen, Technical University of Denmark.

You can see Martijn’s data visualizations here: A single-case (N-of-1) study of Tourette syndrome using personal science to support self-care

For more on personal science and the Quantified Self community — including the newsletter this episode came from — subscribe to Quantified Self on Substack.

Links:

Personal Science Research Group

QS Show & Tell archive

The book

In this casually recorded podcast from the Personal Science Research Group, we start with an introduction from Steven Jonas on the essays of Michel de Montaigne, and then move on to a discussion of our paper about “epistemic agency” as a missing dimension in research on citizen science for health. (The paper has since been published.)

Joining me: Sara Riggare, Uppsala University; Steven Jonas; Thomas Blomseth Christiansen, cofounder of TOTTI Labs; and Jakob Eg Larsen, Technical University of Denmark.

A few highlights

Steven Jonas: “By limiting the scope of conveying experience, the power to resonate with people is actually much stronger and wider than if you strove to make your observations apply universally.”

Sara Riggare: “Epistemic agency is the capacity of an individual to act as a producer of knowledge, rather than only a source of data — to pose questions, gather and interpret evidence, reach conclusions, and be recognized by others as a credible knower.”

Jakob Eg Larsen: “We are not talking about people just using these kinds of devices for tracking physical activity, or your step counts. It’s papers where the individual is asking his own question and doing his or her own analysis of the data.”

Thomas Blomseth Christiansen: “Epistemic agency has been an emergent phenomenon. People have just been doing it. It’s not something that was a top-down mandate or an explicit policy.”

For more on personal science and the Quantified Self community, visit the Personal Science Research Group, the QS Show & Tell archive. Also, you can now pre-order the Quantified Self: Learning to Observe. Although the official release date is Oct. 6, pre-orders are super-important for convincing booksellers that this topic matters, so if you think you will want to own a copy, please help us spread the message by ordering early.

Quantified Self Podcast is about the practice of personal science — using your own data to answer your own questions.

In this Quantified Self podcast three university educators who've spent years teaching people how to use their own data to explore their own questions join me, Gary Wolf, for an unrehearsed, half-hour conversation about what it actually takes to teach personal science. Guests: Sara Riggare, Uppsala University; Thomas Blomseth Christiansen, cofounder of TOTTI Labs; and Martijn de Groot, managing director of Health Innovation Labs at Radboud University Medical Center.

A few highlights:

Sara, on what she's actually giving students and patients: "My role is to give them permission. For the community people, permission to think for themselves; in the university course, permission to think of themselves."

Martijn, on the "essence" of personal science: "You make structured observations, and the data that represents those observations shows something to yourself that is valuable for you — not necessarily for the rest of the world."

Thomas, walking through how a vague interest becomes a manageable project: "My area of interest could be my pollen allergies. Within that area, a question could be, 'What are the dynamics of my sneezes during pollen season?' And in there, there's a phenomenon, which is sneezes."

Nine tips for teaching personal science:

Start with concrete examples, not theory.

Give students explicit permission to ask "small" questions.

Workshop each student's question before tracking starts.

Keep the tracking period short — even just a few days.

Use freshly collected data, not existing historical or wearable data.

Cap written reports at a page to a page and a half.

Build in a peer show-and-tell where students explain their project out loud.

Address the epistemological differences between personal science and biomedicine, public health, and other group-oriented research.

Be permissive about the tools students use to turn data into an artifact — pen and paper included.

For more on personal science and the Quantified Self community, including the newsletter this episode came from, subscribe to Quantified Self on Substack.

MORE LINKS

PSRG (Personal Science Research Group)

Sara Riggare

Thomas Blomseth Christiansen / TOTTI Labs

Martijn de Groot

QS Show & Tell archive

The book