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Patient Communities: Which Way Forward? - SPM Blog
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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 paginemediche.it 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 imedo.de, 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 iWantGreatCare.org 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).


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