Patient Communities: Which Way Forward?

If you were designing a disease treatment system from scratch, bringing together clinicians, patients, researchers, and advocates, what platform would you use to take advantage of the community created by this umbrella group?

This isn’t just some health geek SimCity exercise. I was actually asked that question recently, by people who have lined up the funding and the stakeholders to create a significant new cancer organization in the Netherlands.

As I did my best to serve up relevant insights from my research, I kept wishing I could just replay the Patients and Online Communities panel at Health 2.0 Paris. And now I can:

If you don’t want to watch all 70 minutes, you can skip ahead pretty easily once the video starts to load.

My remarks start about 3 minutes in (here’s my earlier post about what I said) and we begin discussing participatory medicine at about minute 10. The conversation takes off from there.

Roberto Ascione of tells why his site is a meeting ground for doctors and patients. “There is no one recipe to Health 2.0… this is an empowerment of the physician-patient relationship which is the foundation of good health care.”

Jamie Heywood describes why PatientsLikeMe — founded with a goal of drug discovery — is data-driven and why patient communities shouldn’t “lose the narrative, but encode the narrative.”

Gilles Frydman then talks about how ACOR is “all about the narratives” of the 650,000 people who have used it.  He mentions The Moment when a patient realizes that they must participate in their care, when they realize that every cancer patient is “going through a clinical trial with an N of 1.” As he says, “Cancer is the opposite of algorithmic medicine. It is the opposite of having high blood pressure” (and therefore individual stories are so important).

At about minute 21 (if you want to skip ahead), Christian Angele of, talks about how his site provides a forum for people to create a community around their own perspectives and experiences as a patient — personal stories that generate discussion.

Neil Bacon of states that community self-reporting is key to measuring clinical outcomes. In fact, he says, patient satisfaction is as important a measure as “hard” clinical metrics, such as infection rates.

You get the idea (and I haven’t even addressed the excellent demos and Alex Schachinger’s remarks).

What I want to ask is: Which way forward for patient communities?

For example, can we construct a decision tree for an organization starting a community?

  • What are the organization’s goals? Emotional support? Symptom tracking? Drug discovery?
  • What condition or disease are you tackling?
  • What country or region will you recruit from? (Gilles suggested, at one point in the discussion, that patient engagement is more necessary in the U.S. than in Europe because of the significant differences in care delivery. Alex Schachinger suggested that Germans and Americans have different concerns and sensibilities about online communities.)
  • Does the organization have the resources to “go heavy” and create a complex database-driven site, or will it need to “go light” and stick with simple discussion forums?
  • What are the resources of the people you hope to attract to the community? Do they have stable broadband access? Or do they rely on a mobile device for connectivity?

Would the decision tree look different for patients trying to decide which community to join?

  • Is your condition rare or relatively common?
  • Do you want join a local group, to meet people in your area?
  • Do you want to cast your net wide and get international perspectives?
  • Are you a Quantified Self-type symptom-tracker looking for tools?
  • Are you looking for emotional support and personal connections?
  • What kind of personal information are you willing to share online?
  • How tech-savvy are you? Related: What kind of internet connection do you have?

What questions should we add to these lists? What other issues come up when patients gather online, either in small, ad hoc groups or large, organized communities?

Note: If you paused the video, skip ahead to the closing statements from each panelist — they are pretty fantastic (minute 63).


Posted in: patient networks





22 Responses to “Patient Communities: Which Way Forward?”

  1. SusannahFox says:

    My open letter to anyone who wants to start or join a patient community #hcsm #hcsmeu

  2. I particularly like Gilles’ comment on each cancer patient’s experience resembling a clinical trial with n = 1; it’s a thought-provoking idea and meshes with my experiences as a clinical oncologist.

    Indeed, every patient’s tumor is distinct. Even within an individual person, cancer at different sites (such as metastases to the liver, bone or brain) can display varied patterns of gene expression, proteins, responsiveness to drugs and other features.

    The point is – there’s a lot we might learn by following individual patients’ cases very closely. Not all information holds up at the community or population level, but still it may be very relevant to a patient with disease, and true.

    • Susannah Fox says:

      Thank you, Elaine! The N=1 idea rang like a bell in my head the moment Gilles said it and it hasn’t stopped reverberating. Glad to hear it resonates with your experience as a clinician.

  3. All patient care is N=1 in mental health. While we have studies that demonstrate the effectiveness of certain psychotherapy frameworks or techniques, they all must be personalized and meet the individual’s needs at their own level. It’s a powerful concept, and one that Gilles has forcefully and eloquently expressed.

    Having said that, I don’t think any random organization should be trying to run their own patient communities. Having been online now for the past 18 years, I’ve seen more communities that I can count disappear in the blink of an eye due to an organization simply losing interest, focus, or resources to keep their online community going. Vibrant, great online communities cannot just be created by decree. They must be nurtured, like a garden, because they are places where people gather, oftentimes become emotionally naked, and show their vulnerabilities all the while asking for or providing help and information to others.

    Trust is paramount in creating and maintaining such communities. You must be able to trust the people providing the community, like ACOR, is going to be around a year or two from now (much less a decade). Even the best-intentioned people can’t always commit to the resources necessary to not simply “maintain” a vibrant online patient community, but to help it grow along with its members and its members needs.

    So many Health 2.0 people see “community” as just another way of trying to harness population data ala epidemiological studies. I see it as the very definition of what makes people human online — social, special, and full of informal information. The stories aren’t simply “narratives” — they are the stories of people’s lives who are often times struggling with the very questions of life and death. To me, this is the story, the value, and the real strength of online communities.

    • Susannah Fox says:

      John, I called you sage on Twitter and I’ll say it again here: you’re one of the wise men of online communities (and yes, there are wise women too).

      I appreciate your perspective as someone who has seen interest in patient communities crest & fall, crest & fall — how many times? The latest example of a patient community stumble was when Ning announced the end of their free community tools — now hopefully salvaged by WEGO Health:

      Here’s the line that grabs me from your comment:

      “Even the best-intentioned people can’t always commit to the resources necessary to not simply ‘maintain’ a vibrant online patient community, but to help it grow along with its members and its members needs.”

      Because that is what I believe the group from the Netherlands really is: well-intentioned, even earnest. What advice would you give them?

  4. RT @SusannahFox: My open letter to anyone who wants to start or join a patient community #hcsm #hcsmeu

  5. RT @SusannahFox: My open letter to anyone who wants to start or join a patient community #hcsm #hcsmeu

  6. SusannahFox says:

    Every cancer patient is “going through a clinical trial with an N of 1" – @gfry Implications:

  7. RT @SusannahFox: My open letter to anyone who wants to start or join a patient community #hcsm #hcsmeu

  8. RT @AndrewPWilson: RT @SusannahFox: My open letter to anyone who wants to start or join a patient community #hcsm #hcsmeu

  9. Annie Stith (@Gr8fulAnnie) says:

    Hey, Susannah!

    E-patient Annie here again. I appreciate the topics you bring here. They not only inspire discussion but invoke emotion, which I believe is at the heart of patient involvement in their own health care, online or otherwise. And if a patient doesn’t truly care about their own health enough to put in the extra effort, all the tools in the world won’t help.

    I would take N=1 much farther than cancer patients (which I am not) and mental health patients (which I am). I believe every body reacts differently with every treatment, and I wish clinical information were gathered long beyond trials.

    This is one of the most important aspects of online communities for me: learning what successes and/or problems other people have had with specific treatments (mainstream AND alternative), as well as sharing my own experiences in order to help others who have the same conditions as I.

    However, for me, it’s the personal interaction that allows me to share that more freely. The more others become individual characters beyond a UserName, the more willing I am to share my own personal experiences.

    Hearing others’ experiences, as well as (trying) to keep up with the latest news and advances in treatment, serves me in more than one way. It helps me to determine whether or not to try, or continue, with a treatment (this is, after all, my decision in the end, not my doctor’s). It helps me bring questions and suggestions to my doctor (who has much less time than I to keep up with all the latest developments). And sometimes it helps give me hope when I have none.

    I have two conditions that the medical community simply hasn’t had decades and decades to gather much information on and are still being studied (fibromyalgia, and chronic myofascial pain), as well as a known chemical imbalance in my brain which expresses and treats differently with each individual (bipolar disorder). Often I also gain insights into brand new medications in clinical trials or released on the market, ancient treatments for symptoms such as restless legs or anxiety, as well as the standard treatments being used today and the side effects being experienced by others.

    I have joined, and I appreciate the information I can glean from it. I am hoping that I will also gain a sense of community from it. There are other communities I belong to which are less structured and more supportive, but where the treatment information isn’t gathered. They serve different purposes. I’m sure there are other needs met by other groups of which I’m unaware. And I thinks that’s as it should be, because everyone, individuals or health care organizations or governments, all have different needs for setting up community groups.

    I hope this helps.


    • Susannah Fox says:

      Annie, it more than helps. My heart warmed as soon as I saw your name pop up! And, as you did on the post, you delivered real-world, hard-won insights from the front lines of health care.

      You clearly take your health seriously and invest the time to join more than one community, since as you point out, they offer you different things. I’ll be very interested to hear if you continue to find PatientsLikeMe to be the best service for structured treatment information and other places to be the best for what John describes above as the garden you can get naked in (paraphrasing :)

      • Annie Stith (@Gr8fulAnnie) says:


        Thank you. I often wonder if my comments have any meaning beyond giving me an outlet to vent. While that’s a real need for me sometimes, getting a response that shows I’ve been heard is a another, deeper need that often goes unfulfilled. (Or, at least there’s no proof of it.)

        I’ve put your site in my bookmarks as another place to find information, so I’m sure we’ll bump into each other again, here or there.


  10. SusannahFox says:

    @bluetopaz My post on patients & online communities: #health2con

  11. RT @SusannahFox: My open letter to anyone who wants to start or join a patient community #hcsm #hcsmeu

  12. Since there seem to be an agreement with the concept that much of the medical care is N=1, let me ask a simple question:

    In 2010, how do you build the optimal medical online community that promotes the concept above, while still maintaining all the benefits derived from shared rich narratives as well as shared structured medical data?

    • Annie Stith (@Gr8fulAnnie) says:

      Hey, Gilles!

      I’m going to assume that’s an open question for anyone.

      I’m not sure it can be successful. Part of the reason is that I have yet to experience both the information gathering and support community in the same site. It’s part of what I’m hoping is happening at PatientsLikeMe. Part of my hesitation is retraining those of us used to support groups to be so detailed and clinical in the information we share, especially in trying to remember dates of treatments. I’m already faltering inputting at PatientsLikeMe the considerable amount of historical experience I’ve had, and I haven’t made it to the community yet.

      Which brings me to my last point. I think we’re made up of different kinds of personalities. One is the type looking for the emotional exchange in a support community. Another will be happy to provide detailed clinical information. There’s a third type, I’m guessing, which is willing to do both, no matter which way they primarily lean. And then there are those who won’t participate in either.

      My point (I have one) is that with only certain subsection(s) willing to participate, it may very well not grow without a great deal of promotion and I’m not sure how that can be done to cover all the subsets because we’re online in different areas. (Also, the data won’t be representative of all people online with a specific condition, if you’re looking to be that clinical in your results).

      Those are my thoughts, scrambled by narcotics as they may be today.


  13. I am very excited about a slightly similar panel I will be participating at this coming fall in SF at the Health 2.0 conference, titled “The Next Generation of Communities”.

    • Susannah Fox says:

      Manny, that is great news! I can’t wait to hear from this group and am so happy to see this segmentation (truly, it is time to stop lumping all “patient communities” together):

      The Next Generation of Communities

      Moderated by: Indu Subaiya, Co-Founder, Health 2.0

      Online social networks in health are changing rapidly. Less than five years ago the transformation from simple bulletin boards and listservs was just underway. Now online communities are becoming robust tracking tools for longitudinal data that can be mined for clinical insights and therapeutic activity. And the traditional health care system is beginning to take notice and test the integration of online communities in their programs. How will this evolve in the next few years?

      Explore these developments with some of the leaders in online health communities.
      Data mining and discovery platforms:

      * Gilles Frydman, Founder, ACOR
      * Benjamin Heywood, President and Director, PatientsLikeMe
      * Gideon Mantel, Co-Founder and Chairman of the Board, First Life Research

      Integration within the delivery system:

      * Neil Bacon, Managing Director, iWantGreatCare
      * Margaret Rukstalis, Clinician Investigator, Geisinger Health System
      * Howard Steinberg, CEO, dLife

      Everyday life platforms:

      * Manny Hernandez, President, Diabetes Hands Foundation
      * Chris Cartter, General Manager, MeYou Health
      * Kevin Weil, Lead, Analytics, Twitter
      …. and more community leaders (TBA)

      • I agree on the need for segmentation – brilliant thinking by Indu as usual. (Or whoever had the idea!)

        I’m thrilled to see it’s not a short session, too, as is often the case at Health 2.0. The next session starts 100 minutes later – I presume there’s a break in there, but this ought to be substantial.

  14. […] is the question posed by Susannah Fox of the Pew Internet project. She uses the extended discussion session that iWantGreatCare was part […]

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