A Patient-Centric Definition of Participatory Medicine

Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

This new definition devised by the board of the Society of Participatory Medicine provides clarity for the movement. It is a paradigmatic shift and frames a view of medicine currently embraced only by a minority of patients and physicians. The mission of the SPM will focus entirely on advocacy, information, and tools to lead and accelerate change in the culture of health care to this participatory model.

We are essentially patient centric and all of our ideas are designed to optimize the care received by the patient at any time. Since a majority of care is done through self-help, participatory medicine is deeply involved in understanding, cataloging, and scientifically assessing the parameters of self-help and its impact on the medical system.

Recent posts on this blog have touched on the changing patient-doctor relationship in the care process, and both the posts and comments reflect the tension elicited when the quasi sacrosanct role of the doctor is referenced.  Posters note how difficult it is to change how health professionals see the role of patients. And more than once I have seen conclusions that for most people the Internet does not replace doctors.

I personally never intended to replace my doctors, but for 21 years I’ve lived with the idea that we can be much better patients by becoming informed about our particular health issues. Once a medical problem has been identified, I rely on a combination of inputs from doctors, from high-quality, validated resources, and from the now-essential patient-driven online community.

The repeated reminders that we do not intend to replace doctors seem a bit apologetic, like we are children in need of asking forgiveness for our rambunctious behavior. I see this differently. If the system was not broken in the first place, and if we were not facing serious problems as outlined in the current healthcare debates, we would never have looked for solutions. Over-treatment.  Ever-changing recommendations from the medical gurus.  Pharma-influenced trial results.  We educated networkers have become proactive builders.

Now come Drs. Pamela Hartzband and Jerome Groopman (a highly respected doctor and author of books and articles about the modern practice of medicine, including the remarkable “How Doctors Think”). They just published an opinion piece in NEJM entitled “Untangling the Web — Patients, Doctors, and the Internet.”  In it, they rightly note that “nothing has changed clinical practice more fundamentally than one recent innovation: the Internet. Its profound effects derive from the fact that while previous technologies have been fully under doctors’ control, the Internet is equally in the hands of patients. Such access is redefining the roles of physician and patient.”

With that, Dr. Groopman should immediately embrace the nascent Society for Participatory Medicine (join here). His introduction confirms our definition of PM, as we put networking (in its most robust implementation, the Internet) as the accelerant of medicine toward a more participatory model.

In our definition, participation refers to the active involvement of the patient in all aspects of their care. This transformation of the role of modern patients, and their vastly increased use of social media, is already starting to influence all of medicine, from the patient-doctor relationship to data collection, knowledge building and sharing, and even clinical research. Dr. Groopman is correct. The Internet is shifting control across the spectrum.

However, I was saddened to see that his opinion piece shows one more time that many doctors remain uncomfortable about rebalancing the control to a more transparent system built on mutual respect among all parties.  A litany of horror stories is described, each based on the misuse of  Internet-mediated health resources by uneducated patients, unable to make sense of what is presented to them on the Internet or even worse, suffering from la maladie du petit papier.

Other patients whose diseases have no ready cure are drawn to chat rooms and Web sites that may make unsubstantiated claims —[…] Falsehoods are easily and rapidly propagated on the Internet […]. Material is perceived as factual merely because it is on a computer screen. We sometimes find ourselves in the uncomfortable position of trying to dissuade desperate and vulnerable patients from believing false testimonials. Doctors may be perceived as closed-minded, dismissive, or ignorant of “novel therapies” when they challenge such Internet rumors.

What is remarkable in Dr. Groopman’s paper is that there is no examination of the positive aspects of the growing number of informed, activated, and engaged networked patients.  As the founder of the only really large system of medical online communities dealing with cancer (ACOR), I can testify that his characterization quoted above is naïve and damaging to the cause of improved patient care. Far from seeing unsubstantiated claims and falsehoods easily propagated, I’ve witnessed how educated people can research medical and scientific information, and apply it to their own highly personal affliction(s).

Just as patients must learn to sift through the plethora of content to find what’s meaningful to their well being, so doctors must learn to critically elicit, examine and explore their patients’ knowledge, which will often be unique to their condition and not spelled out in practice guidelines and RTCs.  Without such respectful discourse, the tremendous potential value of the information age combined with social networking will be lost on the practice of medicine.

It is the task of the SPM, in addition to providing evidence that participatory medicine can improve outcomes, to build resources that will educate providers as well as patients on effective models of participation. This transformation of medicine is profound and will take time and training, trial and error. Only a minority of Internet users and patients are educated to the degree that they can be ready and willing partners of health care professionals. And only a minority of physicians really grasp the game-changing potential of educated patients.  It is encouraging that curricula in many medical schools, as well as medical librarians, are already embracing their role as partners in the expansion of the PM movement.

Trying to replace doctors in all clinical encounters would be self-defeating. On the contrary, we are here to augment that interaction which has been subjected to tremendous abuse over the last 30 years. It is time to move on in our conversations.


Posted in: e-pts resources | general | net-friendly docs | patient networks | positive patterns | reforming hc | research issues | trends & principles | Why PM




27 Responses to “A Patient-Centric Definition of Participatory Medicine”

  1. A Patient-Centric Definition of Participatory Medicine http://bit.ly/bVzUBw #WhyPM

  2. RT @gfry: A Patient-Centric Definition of Participatory Medicine http://bit.ly/bVzUBw #WhyPM

  3. Gilles,

    GREAT piece of writing.

    I too was disappointed by the tone of the Hartzband / Groopman piece. I’ve never met either of them but it seemed to carry an implicit assumption that “We know we know the truth, but we’re not so sure about them.” Near the end they say “we believe the core relationship should not change.” I could hardly disagree more. They say “Physicians are in the best position to weigh information and advise patients.” If we could reliably count on that, it would be one thing, but we can’t: there’s an implied arrogance in thinking “We’re doctors so we know what needs to be known.”

    Have they read our white paper? Do they know about the Lethal Lag Time? Do they know about Dr. Lindberg (head of the NLM) citing how impossible it is to keep up with the latest research? Do they know how often ACOR kidney cancer patients tell their local oncologists about treatments Boston has had for 5-10 years?

    Are they aware of the patient-generated research documented in the white paper, and how Gleevec came to be, through patient wisdom?

    They say “information and knowledge do not equal wisdom.” I implore them, then, to use their wisdom to do something about the 100,000 deaths a year from medical error plus the equal number of HAI’s (hospital acquired infection).


    As the leading voice of “this isn’t about overthrowing doctors,” I’d like to respond to you about sounding “apologetic” or “asking forgiveness.” Presuming it’s me you’re talking about, you’re wrong about my intent, and I guess I can’t be responsible for how it “sounds” to you. :-) (Fwiw, nobody else has expressed that to me, so I guess I should apologize for how it sounds to you.)

    You correctly (IMO) point out that the system is broken. But I’ve seen people (I’m not talking about you here) who indict people who work in the system as if they were responsible for its creation. To me that’s like someone hating me for the country I live in, even as I work to change it.

    And I work to change healthcare. My choice is to speak to everyone I meet in a way that’s intended to open new possibilities, just as the e-Patient White Paper opened possibilities in mine.

    I don’t ever, ever want to come across as “You suck because you work in a broken system.” When I worked with 20+ residents in my hospital’s quality-improvement retreat last month, and discussed them, and said “This isn’t about overthrowing doctors, it’s a new kind of partnership,” there wasn’t a trace of apology – it was explanation.

    I do want to come across as “Look what I see – do you see it too?”

    Which is exactly what I want from my clinicians.

    Perhaps our new phrase “providers encourage and value [patients] as full partners” should add “and vice versa.”

    • Dave,

      My post is about a movement driven by networked patients called participatory medicine, not about any single individual.
      What’s important is this:

      Dear Dr. Hartzband & Dr. Groopman: The internet is here to stay. Let’s move on.

      From now on, let’s:

      • spend our energy & limited resources to conduct research and truly understand the role and impact of the informed and activated patient on the healthcare system.
      • build the evidence that this movement is a significant societal change that will help transform how business is conducted in 1/6 of our common economy.
      • help educate the current and next generation of young doctors about the benefit of having a practice that actively supports Participatory Medicine.
      • build a better tomorrow instead of trying to adapt and limit our ideas to fit the deeply flawed current system that won’t be able to survive.

      Gleevec didn’t come to be due to wisdom of the crowd. It came about because 1) 2 amazing scientists (Dr. Buchdunger and Dr. Zimmermann both Ciba-Geigy, then Novartis) saw the potential for activity of a molecule that had been set aside earlier and 2) a couple of fantastic oncologists/scientists (Dr. Brian Druker & George Demitri) agreed with them and put their careers at stake to pursue incredibly innovative clinical trials.

      The networked patients were just fundamental to educate newly (mis)diagnosed patients and accelerate the recruitment process of the clinical trials for the drug that was then called STI-571 (Signal Transduction Inhibitor #571). They also understood that we had entered a new era where being an engaged patient required deep health and scientific literacy. When surviving requires you to understand that your mutation is on exon 9 or not you learn fast that you can no longer be a passive recipient of care. The story of Gleevec is one of the best examples of what real Participatory Medicine can achieve. Great scientists, great doctors, great medical institutions, great patient advocates, great patients and the Internet, all working together for a common cause. What a mix!

      As for adding “and vice versa” to our definition, you are missing the point. Patients are not, by and large, dismissive or disrespectful of doctors. On the contrary, as Susannah’s and Brad Hesse of the NCI shows!

  4. I launch a post-length comment:) http://is.gd/bbKjZ on @GFry's excellent remarks on new #WhyPM def. http://is.gd/bbKmv

  5. Joe Graedon says:

    Thanks Gilles,

    A very thoughtful and powerful response to a physician we all respect. It saddens me when someone with such an enormous intellect and ability to communicate approaches a subject without as much insight as I would have expected.


  6. MsGreene says:

    RT gfry A Patient-Centric Definition of Participatory Medicine http://bit.ly/bVzUBw #WhyPM

  7. Good piece! RT @gfry: A Patient-Centric Definition of Participatory Medicine http://bit.ly/bVzUBw #WhyPM

  8. A Patient-Centric Definition of Participatory Medicine http://is.gd/bbDsq

  9. SusannahFox says:

    Dear Dr. Hartzband & Dr. Groopman: The internet is here to stay. Let's move on. http://bit.ly/bVzUBw

  10. […] Article Gilles Frydman, e-patients.net, 2 April 2010 Article (Hartzband 2010) SHARETHIS.addEntry({ title: "A Patient-Centric Definition of Participatory Medicine", url: "http://articles.icmcc.org/2010/04/03/a-patient-centric-definition-of-participatory-medicine/" }); […]

  11. Amy Romano says:

    Hey birthies, since I'm always proselytizing about Participatory Medicine, here's a definition and a great discussion http://is.gd/bbDsq

  12. @markhawker Please go check the post. It's anything but marketing speak; it was carefully thought out, word by word. http://is.gd/bbKmv

  13. Amy Romano says:

    RT @SusannahFox: Dear Dr. Hartzband & Dr. Groopman: The internet is here to stay. Let's move on. http://bit.ly/bVzUBw

  14. RT @SusannahFox: Dear Dr. Hartzband & Dr. Groopman: The internet is here to stay. Let's move on. http://bit.ly/bVzUBw

  15. Alexandra Albin says:

    I read this a few weeks ago and after your posts I re read the opinion piece by Groopman and Hartzband. My take away is that it is a cautionary tale and an obvious reinforcement of the need for a clinician to help ferret out complexities. (I don’t disagree) The advent of the internet and it’s impact on healthcare is revolutionary and evolutionary. I would be a much deeper hole without it. I like many here have written doctors around the world that I did not know to help understand options for my condition.

    (This might sound elitist but…) I can see their point re: the hypochondriac, the obsessive compulsive, or plain ole not terribly logical/deliberative folks (of which there are more of than you can shake a stick at), those who dive in and come up with all sorts of stuff that they fly at w the doctor. The authors simultaneously recognize that roles are changing and they are defending their field from the undermining of what they see as us interlopers. So be it. Not everyone can be forward thinking or embrace a new paradigm, nor would I entirely expect them to. After all, he is an old school Harvard prof.

    But what is interesting, is that his last personal blog post (april 2007) http://www.jeromegroopman.com/blog/ comments on the state of current medical system.

    1- docts have increasingly less time to do an imperfect science

    2- they (docts) may be deluding themselves on what constitutes good performance.

    Given that, what better model is there other than Participatory Medicine?

    He clearly believes in the art of being a physician, as such, I would not expect him to fully embrace the uninitiated, those of us who did not go to years of medical school, are not apart of the “society”. We are just a bunch of rag tag miscreants trying to rearrange the the walls….Let’s Rock the boat baby, respectfully of course.

  16. Amy Romano says:

    RT @ReginaHolliday: A Patient-Centric Definition of Participatory Medicine http://is.gd/bbDsq

  17. DrV says:

    No need to apologize to anyone, I don’t think. This sense of feeling apologetic needs to slip into history at this point. Let the free market take care of things and the doctor-patient relationship will readjust in its own time.

  18. Reading RT @DUrbaniak: "A Patient-Centric Definition of Participatory Medicine" (via e-patients.net) http://bit.ly/b6Wtcg #yam

  19. carlosrizo says:

    @ShareMyIdea RT @msgreene: RT @cwhogg RT gfry A Patient-Centric Definition of Participatory Medicine http://bit.ly/bVzUBw #WhyPM

  20. Pat Jonas says:

    As a family physician of thirty years and 148,000+ patient encounters, I applaud your organization for freeing and uplifting patients from outdated myths about patient and physician roles. I love the addition of the internet to clinical decision making for the patient and I. It’s always a pleasure if I can validate their theories from a physician perspective and congratulate them on a successful quest. My obligation is to “prove the patient right” and to connect to their humanity above the connection to their patient-ness. Our shared humanity is one mode of protection from the medical-industrial complex that is bankrupting America. If we are human to human first and patient to physician second, we are anchored by a higher reality than “medical” and it’s more meaningful and more fun. Keep up the good work!

    • Hi Dr. Jonas (Pat)!

      I am quite sure you are an exceptional physician, although I know nothing about your clinical expertise. But based on 15 years of experience listening to a very large number of patients and also based on my personal experience, only great doctors understand and manage their practice in the true patient-centric way you described so eloquently:

      My obligation is to “prove the patient right” and to connect to their humanity above the connection to their patient-ness

      This should be added to the Hippocratic oath of 2010!

      Thank you again for enriching our conversation.

  21. Sue Woods says:

    Nice! I wrote a similar piece but not posted until today at http://www.sharedhealthdata.com/
    As a clinician and researcher, I’ll be focusing on evidence and experience on better communication and shared information.

    Our journals and professional societies must step up to the plate, educating a new kind of provider.

  22. […] Instead, it is time to talk about the power of conversations informed by data, the self-experimentation that people engage in, the impact of real-world experience on drug safety, and of course, participatory medicine. […]

  23. Peter Murray says:

    RT @repyke: Thanks to Danny Sands for the link,A Patient-Centric Definition of Participatory Medicine http://is.gd/bbDsq

  24. Hope Leman says:

    RT @jourpm: A Patient-Centric Definition of Participatory Medicine http://is.gd/bbDsq Gilles Frydman and e-Patient Dave duke it out.

  25. […] abuse over the last 30 years. It is time to move on in our conversations. Comment Print  Email This Post Share and […]

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