Quantified Self

I believe strongly that data about patients should be patients’ data.” That is why I support the OpenNotes movement and the push to provide patients with access to data from their cardiac implantable electronic devices. Last week, I had the opportunity to spend the day among an eclectic group of pioneers who are taking the principle of patient empowerment through data to its next logical step – patients generating their own data in order to understand their own state of health, and expand the understanding of health and illness in general.

The occasion was a symposium on cardiovascular health, sponsored by the Quantified Self. Quantified Self (QS) is described on its website as a “company” but it is also a movement. A slightly dated but useful description of the movement is available here. Its members are people who are using new tools in new ways to learn more about themselves. Most of these tools are electronic, often wearable, sensors that can easily and continuously track parameters such as heart rate, blood pressure, temperature, activity, etc., but some go way beyond that, to track things like the composition of the gut microbiome. Other participants were creating new technologies to make tracking and data sharing and analysis easier.

Before you dismiss this crowd as a bunch of geeky narcissists obsessing about their bowel movements, consider some of the things I learned from them at the conference:

  • There is a striking circadian rhythm in cholesterol levels (measured every hour), unrelated to food.
  • There is a marked variation in cholesterol (measured daily) over the course of a menstrual cycle.

(Click image to enlarge)

  • Body temperature shows a complex, reproducible variation over the course of the day, with both circadian and shorter cycles.
  • Triggers of atrial fibrillation are now being illuminated through self-tracking of thousands of individuals wearing Apple watches.

I came away amazed at how much human biology is still poorly described and even more poorly understood, excited about the potential of new technology and engaged “citizen-scientists” to advance science and medicine, and energized to have been part of such an intellectually stimulating conversation.

I feel like we are on the threshold of a new and really important era in the evolving history of medicine. What do you think?

9 thoughts on “Quantified Self

  1. Interesting indeed, but a potential hazard for people with health anxiety obsessed with their body functions.

    1. Every technology has the potential for abuse in the hands of the wrong person. But there is SO MUCH greater good that can be generated here. I work as a nurse in research of rare pediatric diseases. Our patients ask us questions based on their anecdotal experiences that we can not can not answer ALL the time, but research dollars never get to these lower priority questions. Why not empower patients to collect real data that might be evaluable? I am not necessarily talking about just n of 1 experiments but n of 5-10.

      1. Yes Yes Yes!
        I believe this is a real untapped opportunity — patients sharing data in order to learn not just about themselves but about health and disease in general. There is a great reservoir of useful information about natural history, response to treatment, connections among conditions, etc. etc. that can never be fully addressed by conventional investigator-driven research. Doctors (good ones!) have always tried to learn from their patients, and this is the new way to do so.

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