I have been following with real interest the notes and discussions about the Health 2.0/Ix conference that took place in Boston last week.

I am not willing to get involved in this discussion because in some ways I think it missed the most important aspect of the conference. I did send a tweet showing my personal displeasure with the intermingling of the commercial presentations with the conversations about what we (we as collaborative) are doing to keep/nourish a highly productive and innovative hive. I think the conference would benefit from separating the two.

But this criticism does not, in any way, take away the fact that for the first time at a major health-related conference the patient voices were clearly at the center of all the conversations. That is a feast I believe will have long-term repercussions. Isn’t ironic that those of us who have attacked in the past the more hierarchical Ix vision (compared to the peer-to-peer communications taking place in social networks) were given the opportunity to use the microphone at every possible opportunity during the Ix conference.

Participatory Medicine was the meme of this conference. That simple fact is another sign of the transformation finally taking place in the mindset of many of the professionals who are driving the institutional or commercial ventures that are changing how the American public gets access to health information & data. So, I think we, the e-patients, should give a BIG Thank You to the conference organizers and their teams.

e-Patient Dave talks about Participatory Medicine

e-Patient Dave talks about Participatory Medicine

The conference allowed many e-patients managing very successful online resources to socialize and to compare opinions about a wide range of topics. In that sense too the conference was very empowering and a big success. You can find many tweets and blog comments confirming this feeling among e-patients.

Many of our conversations focused on the simple fact that the leading e-patients have all faced, either as patients or as caregivers, diagnosis that could result in death. As e-Patient Dave constantly reminds everyone, people become radicalized when it becomes personal. Every one of the vocal e-patients at the conference has become an expert to survive 

  • a diagnosis that sounds like a death sentence (e-Patient Dave was told his life expectancy was 24 weeks, Jamie & Ben Heywood or Carlos Rizo) or,  
  • a chronic disease requiring lifelong evolving treatments and behavior (Amy Tenderich was diagnosed with Diabetes Type I) or 
  • an accident requiring years of treatments (Jen McCabe-Gorman) or, 
  • a rare cancer diagnosis that turned out to be a total misdiagnosis (Trisha Torrey) or, 
  • a cancer diagnosis with the wrong treatment (that is why we, Monica & Gilles Frydman created ACOR)

If you take the combined readership of the websites created by the few individuals referenced above you will be amazed at the impact a few activated, informed and dedicated people can have! We collectively represent the incredible power of the internet, which offers us the possibility to be actors in the transformation of the health care system. Each one of us has become an expert at using the Read-Write capabilities offered to us.

 

Like in Lawrence Lessig presentation, we all constantly use scientific, technical and medical information gathered from the internet and rewrite these resources to deliver the latest information at incredible speed to many people who would have real difficulty finding and filtering all this info on their own.  It turns out we have the same motivations, even if we have very different styles.  

And so, it was highly energizing to see the voices of these radicalized e-patients being finally taken seriously by what appeared to be the majority of the conference attendees. 

Interestingly, after speaking, 2 days after Health 2.0, at a cancer conference attended exclusively by professionals working at major cancer centers, I was told repeatedly:

“Thank You for reminding all of us that this is all about the patients! We seriously need to be reminded of that fact on a regular basis”. 

For sure I should have quoted e-Patient Dave when he said:

Stop talking about patients in the third person!

Thanks again, Indu, Matthew & Josh, for allowing us to have this great e-patients fest!

Update 4/30: see Gilles’s sequel post about minority representation.

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