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.
- 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.
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- 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?