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.