{"id":95854,"date":"2009-11-16T00:00:00","date_gmt":"2009-11-16T05:00:00","guid":{"rendered":"https:\/\/alpha.pewresearch.org\/pewresearch-org\/2009\/11\/16\/participatory-medicine-and-health-data-rights-on-npr\/"},"modified":"2024-04-14T04:17:45","modified_gmt":"2024-04-14T09:17:45","slug":"participatory-medicine-and-health-data-rights-on-npr","status":"publish","type":"post","link":"https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/2009\/11\/16\/participatory-medicine-and-health-data-rights-on-npr\/","title":{"rendered":"Participatory medicine and health data rights on NPR"},"content":{"rendered":"

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

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

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

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”?<\/b> <\/p>\n\n

Tom Ferguson<\/a> coined the term e-patients to describe individuals who are equipped, enabled, empowered and engaged<\/b> 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.<\/p>\n\n

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

@markhawker: Yes, the Pareto Principle<\/a> 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?<\/b> <\/p>\n\n

Yes, an early finding (2000) was that half of health searches are on behalf of s.o. else and yes, offline sources still central.\u00a0 See: The Online Health Care Revolution<\/a> (2000) and The Social Life of Health Information<\/a> (2009).\u00a0 My colleagues at the Pew Research Center’s Internet & American Life Project have looked at decision-making<\/a> in other sectors. John Horrigan’s 2008 report, The Internet and Consumer Choice<\/a>, is my favorite.<\/p>\n\n

Anyone have more citations to share with Mark?<\/p>\n\n

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

PatientsLikeMe<\/a> is an excellent example of what our research shows, but I was also thinking about the old-school communities (ACOR<\/a>, Braintalk<\/a>, Yahoo! groups<\/a>) as well as other start-ups (CureTogether<\/a>, Inspire<\/a>), patient blogs (DiabetesMine<\/a>) and established websites (WebMD<\/a>, HealthCentral<\/a>). 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. <\/p>\n\n

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.”<\/b> <\/p>\n\n

I blatantly stole that line from Ted Eytan whose post, Is it meaningful if patients can’t use it?<\/a>, 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<\/a>).<\/p>\n\n

Let’s keep the conversation going on e-patients.net<\/a>:\u00a0 Questions? Comments? Complaints?<\/b> <\/p>","protected":false},"excerpt":{"rendered":"

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