November 16, 2009

Participatory medicine and health data rights on NPR

NPR’s Morning Edition story, “Patients Turn to Online Buddies for Help Healing,” combined research and real-life examples, participatory medicine and health data rights.

Much of what I said during my interview with Joseph Shapiro is based on what I’ve written and read here and on e-patients.net, so, first, thank you to the online community.

I’ve already started answering questions on Twitter about some of the assertions in the story, so let’s keep the conversation going.

From @markhawker: What does the “e” stand for in “e-patient”? If only 20% contribute online, then why do the other 80% have an “e”?

Tom Ferguson coined the term e-patients to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. He envisioned health care as an equal partnership between e-patients and health professionals and systems that support them.

The 80/20 split is pretty typical (see: http://bit.ly/10Z9cs). And listening is a form of engagement, wouldn’t you agree?

@markhawker: Yes, the Pareto Principle occurs in most walks of life! I’m interested in how individuals make collective decisions e.g. they may “engage” by listening and then consult a friend, relative or carer offline. Or, the e-patient may not be the actor! Have you looked at how the different mediums (online, offline etc.) interact to inform decisions? Like, the case-mix?

Yes, an early finding (2000) was that half of health searches are on behalf of s.o. else and yes, offline sources still central.  See: The Online Health Care Revolution (2000) and The Social Life of Health Information (2009).  My colleagues at the Pew Research Center’s Internet & American Life Project have looked at decision-making in other sectors. John Horrigan’s 2008 report, The Internet and Consumer Choice, is my favorite.

Anyone have more citations to share with Mark?

Regarding my quote, “They are posting their first-person accounts of treatments and side effects from medications…” illustrating the 20% of e-patients who contribute to the online conversation about health:

PatientsLikeMe is an excellent example of what our research shows, but I was also thinking about the old-school communities (ACOR, Braintalk, Yahoo! groups) as well as other start-ups (CureTogether, Inspire), patient blogs (DiabetesMine) and established websites (WebMD, HealthCentral). Honestly, these are just the sites that come to mind immediately and I hesitate to start a list — it could take up pages and pages.

Regarding my quote, “The patients on the vanguard, who understand what’s at stake, are saying it’s not meaningful if I can’t use it.”

I blatantly stole that line from Ted Eytan whose post, Is it meaningful if patients can’t use it?, chronicles our first meeting with Regina Holliday (who was featured in an NPR story by Joseph Shapiro last week: A Widow Paints a Health Care Protest).

Let’s keep the conversation going on e-patients.net:  Questions? Comments? Complaints?