---
title: "Participatory medicine and health data rights on NPR"
description: "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."
date: "2009-11-16"
authors:
  - name: "Susannah Fox"
    job_title: "Former Researcher"
    link: "https://www.pewresearch.org/staff/susannah-fox/"
url: "https://www.pewresearch.org/internet/2009/11/16/participatory-medicine-and-health-data-rights-on-npr/"
categories:
  - "Health Policy"
  - "Healthcare Online"
  - "Medicine & Health"
  - "Online Privacy & Security"
  - "Online Search"
  - "Privacy Rights"
  - "Social Media"
---

# Participatory medicine and health data rights on NPR

NPR's Morning Edition story, "[Patients Turn to Online Buddies for Help Healing](http://www.npr.org/templates/story/story.php?storyId=120381580)," combined [research ](https://www.pewresearch.org/internet/topics/Health.aspx)and [real-life examples](http://www.patientslikeme.com/), [participatory medicine](http://participatorymedicine.org/) and [health data rights](http://www.healthdatarights.org/).

Much of what I said during my interview with [Joseph Shapiro](http://www.npr.org/templates/story/story.php?storyId=2101159) 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](http://www.doctom.com/) 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](http://bit.ly/10Z9cs)). And listening is a form of engagement, wouldn't you agree?

**@markhawker: Yes, the [Pareto Principle](http://en.wikipedia.org/wiki/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](https://www.pewresearch.org/internet/Reports/2000/The-Online-Health-Care-Revolution.aspx) (2000) and [The Social Life of Health Information](https://www.pewresearch.org/internet/Reports/2009/8-The-Social-Life-of-Health-Information.aspx) (2009). My colleagues at the Pew Research Center's Internet & American Life Project have looked at [decision-making](https://www.pewresearch.org/internet/topics/Decision-Making.aspx) in other sectors. John Horrigan's 2008 report, [The Internet and Consumer Choice](https://www.pewresearch.org/internet/Reports/2008/The-Internet-and-Consumer-Choice.aspx), 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](https://www.pewresearch.org/internet/Reports/2009/8-The-Social-Life-of-Health-Information/03-Social-Media-and-Health/1-Many-seek-a-justintime-someonelikeme-but-few-post-their-own-stories.aspx?r=1) who contribute to the online conversation about health:**

[PatientsLikeMe](http://www.patientslikeme.com/) is an excellent example of what our research shows, but I was also thinking about the old-school communities ([ACOR](http://www.acor.org/), [Braintalk](http://brain.hastypastry.net/forums/), [Yahoo! groups](http://groups.yahoo.com/)) as well as other start-ups ([CureTogether](http://www.curetogether.com/), [Inspire](http://www.inspire.com/)), patient blogs ([DiabetesMine](http://www.diabetesmine.com/)) and established websites ([WebMD](http://www.webmd.com/), [HealthCentral](http://www.healthcentral.com/)). 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?](http://www.tedeytan.com/2009/05/28/3086), 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](http://www.npr.org/templates/story/story.php?storyId=120028213)).

**Let's keep the conversation going on [e-patients.net](http://e-patients.net/archives/2009/11/participatory-medicine-and-health-data-rights-on-npr.html): Questions? Comments? Complaints?**