Health 2.0 meets Ix: The Rise of the Patient Voices

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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23 Responses to “Health 2.0 meets Ix: The Rise of the Patient Voices”

  1. New post about #health2con: “Health 2.0 meets Ix: The Rise of the Patient Voices” http://twurl.nl/tlxxcy

  2. Wow, GREAT post, Gilles. You put into words what I felt. The difference is that you have the long-term perspective.

    It was humbling and joyful to meet ALL of the e-patients you cited, for the first time – all within 24 hours! (Okay, I’d briefly met the Heywoods before, but still.) And then to meet all those marvelous people who are starting to work in the Society for Participatory Medicine and its Journal… what a wonderful couple of days.

    And as you say, it was a very well run event. Thanks indeed to the organizers.

  3. ePatientDave says:

    Phenomenal: RT @gfry: New post about #health2con: “Health 2.0 meets Ix: The Rise of the Patient Voices” http://is.gd/vvbq

  4. Thanks Dave!

    I should have added that it was just as exhilarating to see the growing number of health professionals who just “get it”. It is clear that we are now at an important juncture where we have reached the critical size that will allow much faster transformations than were possible until now.

    It is an exciting time!

  5. I’ve just had my breath taken away – literally. For the first time, I just read Jen McCabe Gorman’s story, embedded in her impassioned declaration I am an e-patient 50 weeks ago.

    Please, everyone, if you haven’t read it, sit down for a few minutes and read, absorb, think. Think what this means for the future of healthcare.

    How DARE anyone take away from us the right – and the ABILITY – to participate in our care in EVERY WAY POSSIBLE. To do so would totally diss Jen’s achievement.

    Forget about me; I was only sick for six (adventurous) months. Jen’s recovery took seven years. Amy’s condition is forever. Gilles’s and Monica’s work took years. Trisha’s work took ages to overcome her totally wrong diagnoses. The Heywoods spent years and millions of dollars fighting for their brother’s life, achieving things no MD had achieved. Carlos developed treatments and devices of his own, which his specialists hadn’t.

    The days of arrogant doctors asking “Who’s got the medical degree here?” are dead. It’s a partnership now. Stop resisting; let’s get on with building the future.

  6. […] and innovative hive. I think the conference would benefit from separating the two.” Article Gilles Frydman, e-patients.net, 29 April […]

  7. RT @ePatientDave: Phenomenal: @gfry New post about #health2con: “Health 2.0 meets Ix: The Rise of the Patient Voices” http://is.gd/vvbq

  8. Thanks for this @gfry #health2con: “Health 2.0 meets Ix: The Rise of the Patient Voices” http://is.gd/vvbq

  9. I get goosebumps reading your account, Gilles, because the experience for those of us who have been beating this drum for so long was just so ALL THAT!

    Thanks for putting into words the HIGH we e-patients felt as we shook the hands of those who were there to, yes, HEAR and EMBRACE our messages, our tireless efforts to make sure that for those who need it, e-patienthood is alive, well and saving lives.

  10. SusannahFox says:

    RT @gfry New post about #health2con: “Health 2.0 meets Ix: The Rise of the Patient Voices” http://twurl.nl/tlxxcy

  11. Gilles,

    Thanks for your spirited and thoughtful comments. It’s great to hear from the e-patients themselves that all the hard work of the IxCenter & H20 teams helped to further our mutual goal of advancing participatory medicine.

    Since I started observing patients in the clinical setting and doing structured interviews with them outside of it nearly 10 years ago, I have been saying (to anyone who would listen) that “we are all patients,” so I completely agree with you & Dave on that account. In fact, my latest “patient” post went up on the IxCenterBlog last night…unfortunately, I wasn’t feeling very “e” as a caregiver last night.

  12. Susannah Fox says:

    Regarding the intermingling of “commercial” presentations and what I’ll call “substantive” conversations: The presenters do not pay for the stage time, which I think is important to note. Also, I think many of the presentations are thought-provoking and keeps Health 2.0 current. I have been to other health care events where the demos are essentially advertorial and, worse, longer than 3.5 minutes!

    The two “substantive” conversations that have stuck with me: Susan Dentzer and Neil Calman; Jamie Heywood and Paul Wallace. I’d read those transcripts or watch those videos with popcorn any day of the week — I found them that enjoyable. I think part of it is the high level of knowledge and insight, but also the format and time they were given.

    I would have loved to see e-patient Dave, for example, given that kind of back-and-forth debate time.

  13. Susannah,

    Thanks for clarifying about the commercial demos. Although Health 2.0 always does demos this way, it was an experiment for us (in the past, we have always specifically set aside the commercial demos from what we had historically deemed the non-commercial educational content of the conference).

    This is one where where I have probably changed my mind because of the way we (following Matthew & Indu’s past process for the most part) went about this process. First, demo-ers are selected through a rigorous and competitive process (everyone from small start-ups to Google has to demo for us). We were grateful to have dozens of fabulous products and services from which to choose.

    Second, we select demos not just for their quality but also for how they demonstrate an approach that fits into the session. For example in Susannah’s Debate (#4), we were trying to show the range of strategies for navigating health information (automated, human-powered, and in-between) and navigating the delivery system.

    To my own anti-commercial instincts, it took a while to get used to, but I think it helped to demonstrate the points we were trying to communicate.

  14. Susannah,

    far from me the idea of removing the “commercial presentations”. I know for a fact that it’s not ACOR who made the conference possible :-)

    I just think it would be beneficial to have the 2 separated. The substantive talk, followed by the presentations. Heck, why not have each substantive talk officially sponsored by a group of commercial presenters (the public TV model).

    I would love to see more debate between 2 sides who clearly do not see eye to eye. Like me and John Halamka talking about PHRs and how we could/should involve real e-patients in the definition/standardization of the CCR :-) Or e-Patient Dave exchanging ideas with a person known as PookieMD on the healthcareblog and who wrote this just yesterday:

    “Slow down, horsie! The purpose of an EMR is to provide an electronic chart for health care workers to use. It is NOT designed as a way for a patient to educate himself on his disease, nor as a way to provide “free quality control.” Physicians use the EMR for several reasons: 1) to demonstrate a thought process 2) as a tool for decision making 3) a tool for communicating with other providers 4) a record of what is going on with the patient’s management. It is absolutely NOT intended as a record for patient use. To require that we, as physicians need to “keep data and information in terms the patient can understand” demonstrates a completely lack of understanding of what health care providers do, and how we make decisions and share information. If you were to read a technical manual on how to fix your car, would you expect it to be in ‘terms you can understand’? No you wouldn’t. This is an extremely misplaced post and demonstrates exactly what an EMR should NOT do.”

    Talk about a total lack of the participative mindset! They still exist and we need to engage them publicly, IMO..

  15. I have been an avid follower of the health 2.0 conversation. And, I am greatly inspired by the stories of transformative experience “epatients” have made. Your post brought up something I had not thought of before but do now, which is this seeming arbitratiry separation between epatitent and other patients. (Maybe because I was not at the conference and so did not get the nuances you all may be familiar with).

    To me (a person with a chronic rare medical condition) the work happens on multiple fronts. What I do on the computer daily to interface with others with my condition and keep up with timely research has to translate into action. That to me is the transformational part. I have to take what I have learned and then apply in a proactive, sometimes in a rankling the system sort of way. That to me is the hard part. When you are staring down the face of the barrel (the system, doctors, disability insurance agents, insurance) and pushing buttons to get something done that may not follow “traditional” processes. The internet is useful in helping develop new tactics, learning more about conditions, finding alternatives, and learning from others. e.g. what codes to use to get a procedure paid for. Then the heavy lifting happens and that is where I think the patient transformation process happens. Then you have to synthesize and put to work what you know in the face of a system that is not used to or comfortable being challenged. One does not have to be an epatient to do that. The internet only makes that information more accessible and digestible. Ultimately one has to be an empowered and proactive

  16. RT @zorgbeheer: DELI Health 2.0 meets Ix: The Rise of the Patient Voices | e-Patients.net http://tinyurl.com/dkq2km

  17. David Harlow says:

    2 views re last wk’s #health2con – http://bit.ly/12sbVV and http://bit.ly/EUMED & fr orgzrs: http://bit.ly/14WQnz and http://bit.ly/5zqI1

  18. Alexandra – I think you are under a misconception — as I originally was — that the “e” in e-patient refers to electronic.

    It turns out, it does not. As you can see on the About e-Patients page , it stands for equipped, enabled, empowered and engaged. That was Tom Ferguson’s moniker and definition.

    And you are certainly that! You are an e-patient and may not have realized it.

  19. http://tinyurl.com/dkq2km note the comments…epatients nail it again

  20. I am having an Aha moment. All this time, given all the posts, and talk about h2.0 almost as the hub of the wheel I married epatient with h2.0 and the electronic world. Glad that it is empowered engaged, and enabled. Thanks!

  21. carlosrizo says:

    RT @SusannahFox: RT @gfry New post about #health2con: “Health 2.0 meets Ix: The Rise of the Patient Voices” http://twurl.nl/tlxxcy

  22. […] Health 2.0 meets Ix: The Rise of the Patient Voices by Gilles Frydman on e-Patients.net, and a follow-up post on Health 2.0/Ix Conference: What About Minority Representation? […]

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