{"id":6787,"date":"2010-08-09T11:36:05","date_gmt":"2010-08-09T16:36:05","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=6787"},"modified":"2010-08-09T11:36:05","modified_gmt":"2010-08-09T16:36:05","slug":"patient-communities-which-way-forward","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2010\/08\/patient-communities-which-way-forward.html","title":{"rendered":"Patient Communities: Which Way Forward?"},"content":{"rendered":"

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?<\/p>\n

This isn’t just some health geek SimCity <\/a>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.<\/p>\n

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<\/a>. And now I can:<\/p>\n

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If you don’t want to watch all 70 minutes, you can skip ahead pretty easily once the video starts to load.<\/p>\n

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

Roberto Ascione of paginemediche.it<\/a> tells why his site is a meeting ground for doctors and <\/em>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.”<\/p>\n

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

Gilles Frydman then talks about how ACOR <\/a>is “all about the narratives” of the 650,000 people who have used it.\u00a0 He mentions The Moment<\/a> 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).<\/p>\n

At about minute 21 (if you want to skip ahead), Christian Angele of imedo.de<\/a>, 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.<\/p>\n

Neil Bacon of iWantGreatCare.org<\/a> 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.<\/p>\n

You get the idea (and I haven’t even addressed the excellent demos and Alex Schachinger’s remarks).<\/p>\n

What I want to ask is: Which way forward for patient communities? <\/strong><\/p>\n

For example, can we construct a decision tree<\/a> for an organization starting a community?<\/p>\n