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 on, so, first, thank you.

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

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: 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:  Questions? Comments? Complaints?


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24 Responses to “Participatory medicine and health data rights on NPR”

  1. SusannahFox says:

    Re the NPR story: My thank-you note to, @tedeytan (and a request for comments)

  2. RT @SusannahFox: Re the NPR story: My thank-you note to, @tedeytan (and a request for comments)

  3. David Harlow says:

    Participatory Medicine hits @NPRhealth @SusannahFox continues the convo at

  4. John Sharp says:

    RT @healthblawg Participatory Medicine hits @NPRhealth @SusannahFox continues the convo

  5. ehealthgr says:

    RT @JohnSharp RT @healthblawg Participatory Medicine hit @NPRhealth @SusannahFox continues the convo

  6. RT @SusannahFox: Re the NPR story: My thank-you note to, @tedeytan (and a request for comments)

  7. Mark asks a lot of interesting questions.
    He could find some answers to many here:, an old ACOR project funded by RWJF, about efficient online communities.

    For active contributors, the Pareto rule is imperfect and misleading. In fact less than 20% are vocal but a much bigger percentage participates, by reading and learning from others. We certainly do not have enough understanding at this point to be able to accurately judge the effect of vocalization vs silent participation.

  8. Mary Madden says:

    RT @SusannahFox Re the NPR story: My thank-you note to, @tedeytan (and a request for comments)

  9. Deborah says:

    I caught the interview on NPR this morning – your 15 minutes of fame have expanded marvelously.

    Seriously, the interview was excellent.

  10. SusannahFox says:

    @andrewjcohen Thanks, it was a fun interview. Please add your thoughts if you have time:

  11. Susannah Fox says:

    Ha! I guess 15 minutes scales differently online. At least I know I’m among friends here when people feel free to mock.

    Honestly, I think this story is just one of hundreds that could be told about participatory medicine + health data rights. Here’s another one:

    How to Make Health Care Remarkable – the @ePatientDave Interview

    And hey, here’s a whole *journal* of stories :)

  12. I just wanna say, I’m chomping on my headset waiting to get on the wifi commuter bus tonight to listen to this segment!!

  13. Harpraxis says:

    More tales of e-patients: the Pernicious Anaemia Society ( is doing great things for a little-researched disease. Many, perhaps even most, people with pernicious anemia (inability to absorb B12 because of a lack of intrinsic factor, which can have various causes) do well on the standard treatment regime of one injection of B12 every 1-3 months. Quite a lot of people don’t, and the forum is full of incredibly useful information and discussion on why this might be the case, how to deal with the symptoms and how to treat, how to talk to doctors to get more B12 injections, and so on. The Society has produced a report on the segment of the PA-affected population that requires higher levels of B12 and has, I believe, just begun to participate in a clinical study to try to find out why some people need more frequent B12 injections.

    It’s good news for people with PA, as very little research has been done on this condition since B12 was first discovered and synthesised over 50 years ago. The internet and the collaboration and communication it enables is helping people with PA regain their lives.

  14. Alan Greene says:

    RT @s4pm Participatory medicine and health data rights on NPR |

  15. Harpraxis story is great! One more example of the truly unique power of the Internet for anyone dealing with an unusual problem.

    It is high time to escape the tyranny of the majority, since in health and sickness, YOU are constantly in a N-of-1 trial. Those suffering from orphan diseases understand naturally this simple fact and become much more engaged in their care and equal members in their care team. It will take a while for all others patients to understand they are in a similar predicament.

  16. Robert says:

    Basing something on real-life facts and real-world opinions from Americans? What a silly idea for a health care reform bill that may actually WORK :)

  17. Susannah Fox says:

    Check out the comments associated with the NPR story – not one but two people posted about how they use the internet to take care of their pets (and one said his vet’s records are far superior to his human doctors’).

    It reminded me of Josh Seidman’s post, Canine-Centered Care.

    The irony of this thread is not lost on any of us.

  18. SusannahFox says:

    @jslev Thanks for the RTs! Please join the conversation on

  19. SusannahFox says:

    @swisshealth20 I love that you can listen to NPR from afar! Join the conversation about the show if you have time:

  20. SusannahFox says:

    @BernardF Thanks for the RT on the NPR show – join us:

  21. Andrew Cohen says:

    Susannah, thank you for your terrific contributions to the NPR story. It always seemed to me that a good first step would be for doctors to start giving meaningful, written documentation and instructions when you leave their office. We’re quite far away from universal electronic record-keeping and patient sharing when, in my experience, many medical visits still end with the patience being handed nothing more than an insurance form with a diagnostic code on it. I get more detailed written information when I pick up my car from the repair shop!

    Also, improved service provider data needs to be substantially improved as well. It’s difficult to find out accurate hours, locations, insurance accepted, etc. I wrote a blog post about my frustrations. (Caveat, I’m not an e-health researcher, so my prescriptions may be someone what half-baked. unoriginal). I suspect that my obsevations aren’t all that original. Here’s my blog post, for your interest:

  22. Susannah Fox says:

    Thanks Andrew, we can now add the car-repair shop to our list of places you can get an informative after-visit summary (in addition to the vet).

    Nobody has a lock on the solutions here and opinions from all sides are welcome. Personally, I love the name of Forum One’s series: “Shovel-ready online civic projects.”

  23. […] 2009: Susannah Fox was on NPR’s Morning Edition: Participatory medicine and health data rights on NPR […]

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