I had the opportunity last week to participate in a day-long meeting sponsored by the Heart Rhythm Society. The goal was to help HRS develop recommendations for physicians and industry on providing patients access to information generated by wearable and implantable cardiac electronic devices. The organizers invited me to provide the viewpoint of an educated patient.
I can’t say how HRS will ultimately craft the guidance (and I am not involved in writing it), but the discussion was lively, and I came away with a number of impressions.
First, device manufacturers understand that they must move to afford patient access to the data their products are generating, but they are limited in how quickly they can do so by a number of factors, including the slow pace of technical iteration created by close regulatory oversight, the uncertainty of what data patients want and how to present it, and concerns about getting out ahead of electrophysiologists (their traditional customers) on this issue. Nevertheless, I was impressed that there seemed to be unanimity of opinion among the manufacturers that patients should have access to the same data that doctors see.
Continue reading Getting There
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.
Continue reading Quantified Self