Epatients: The Hackers of the Healthcare World

I help build open source software tools that patients can use to have greater control and influence over their own healthcare (like the Direct Project and Your Doctors Advice). As as result, I've become quite familiar with other tools that do the same sorts of things. There is a community of patients who are deeply interested in the ways in which they can become more engaged and how they can specifically use technology to achieve this. This community calls themselves epatients. The epatient community asked me to write a short collection of resources for "becoming an epatient."

The "e" in epatient is intentionally obscure. The initial assumption is that the "e" stands for "electronic," as it does in "email." But in fact, the "e" stands for "engaged" or "empowered." Nonetheless, reference to email is intentional: The epatient community recognizes that leveraging data is a critical part of empowering a person who happens to be sick. Patients must be "electronic" to become fully "engaged." I think of epatients as the healthcare equivalent of makers and hackers. More importantly, they are the people I have in mind when I write software.

Engaged patients get better healthcare. Not just a little bit better. Much better. This is not a thesis I am prepared to defend here, except to drop a link to the Journal of Participatory Medicine, which is a good resource for those seeking a full chronicle of this engaged effect (the benefits of engagement have been documented in the healthcare literature for years)...