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The ePatient Revolution

Discussion in 'Phoenix Rising Articles' started by RyanPrior, Oct 30, 2014.

  1. RyanPrior


    RyanPrior submitted a new blog post:

    The ePatient Revolution

    Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ...


    We need more and more ME/CFS patients to integrate into the ePatient (“engaged/empowered patient”) Revolution. Get informed, tell your story, unite with other patients online, and change health care for the better.

    Six weeks ago, I attended the Stanford Medicine X Conference, an annual forum that celebrates “emerging technologies in medicine.”

    The conference, similar to what you might expect from a TED conference, is particularly notable because it so thoroughly celebrates the patient perspective and because it has a massive social media impact.

    I would daresay that it might be the epicenter of a patient-centered revolution that is beginning to shake modern medicine.

    Through four intense days, I attended talks, workshops and other events with doctors, patients, academics, technologists, and people from pharmaceutical companies, all devoted to solving problems in health care with cutting edge techniques and innovative collaboration.

    The highlights were always the “Ignite talks,” 5-minute high-impact patient stories in the style of TED talks. The Ignite talks were a constant reminder of the purpose of health care: to serve patients.

    Perhaps the most moving talks were from doctors or EMTs who became sick or injured themselves, being thrust from the “provider” role into the “patient” role.

    Those who can learn to see both sides of the health care interaction often have the greatest insight into how to solve our most pressing health care problems.

    I am very grateful to be chosen as one of 35 “ePatient Delegates” to the conference, and to have been the first delegate from the ME/CFS patient population.

    As Phoenix Rising readers will know all too well, unfortunately, sending more ME/CFS ePatient Delegates to Medicine X will continue to be a major uphill battle for us. Getting a seat at the table seems nearly impossible when it's such a struggle for most patients to get out of bed or to have increased stimulation.

    Even as someone on the higher functioning end of our patient population, I had to spend a great deal of my time in the conference's “wellness room,” resting and sleeping in silence to muster up some extra energy to go hear another couple hours of inspiring and thought-provoking discussions.

    But these world-changing conversations are something our patient population absolutely needs to be a part of.

    Our patient leaders should make every effort to apply for the ePatient Scholarship program, and all of us can continue to participate from anywhere via Medicine X's Global Access Program.

    The conference is a safe, cosmopolitan forum where informed and passionate patients coexist seamlessly. I learned immensely from being immersed in a patient group composed of patients with cancer, diabetes, rheumatoid arthritis, fibromyalgia, myasthenia gravis, and other diseases.

    My roommate was actually an amputee and a paramedic, “the Prosthetic Medic.” People don't always think about it, but being an amputee is a truly a form of chronic disease as well.

    My key take-away was that the problems our population faces are often exactly the same problems every patient population faces: lack of access to quality care, lack of unity between more/less severe patients, segmentation into various types of patients, etc.

    The problems amputees face in uniting different segments of the amputee community (traumatic injury amputees, disease amputees, and congenital amputees) are remarkably similar to the underlying issues of fragmentation we face.

    The same could be true of the autism community, which deals with an inherent split on whether to address the condition as a curable disease or to embrace the condition as a part of human neurological diversity.

    I would argue that much of the solution to a patient population's problems can be addressed through coalition-building. Simply put, a community is stronger with the voices of many. And communities need all the allies they can get.

    It's not just an issue of ME and CFS (or ME/CFS). It's not just the neuroendocrineimmune diseases (ME/CFS, fibromyalgia, Lyme, Gulf War Syndrome and MCS).

    It's about seeing ourselves reflected in communities as diverse as lupus, rheumatoid arthritis, autism, and yes, even amputees. The key message of Medicine X is that patients of every kind everywhere have a common goal and can have a common voice.

    We know well that ME/CFS suffers from being considered outside the medical mainstream.

    Medicine X is a welcome forum where we can build a conversation toward fixing that.

    Increasingly, some of our boldest advocates are working to build a more diverse cosmopolitan dialogue about ME/CFS being part of a larger global problem of chronic disease more generally. HealClick, for instance, is a community of patients with Lyme, fibromyalgia, ME/CFS, and several other diseases.

    Canary in a Coal Mine director Jennifer Brea began an online talk show called Thrive Show which features guests from a variety of different chronic disease perspectives.

    The film I am directing with Nicole Castillo, Forgotten Plague, will also pivot toward a more universal narrative of the massive problem of chronic disease, which now saps 75% of health care budgets in developed nations.

    To become more mainstream, it's imperative that we latch onto the larger, universal narratives. It's important that we continue to step up and tell our stories in every forum we can through every medium we can.

    The biotech and data-sharing revolutions (“Health 2.0”) are shifting the culture of health care away from an historic paternalistic doctorpatient relationship. Doctors are no longer the fount of all knowledge they used to be. Patients, particularly chronic patients, are the experts in their own diseases, in their own bodies.

    Patients often have decades of expertise as the primary investigator in their own personal n=1 study. We're moving rapidly into an era of patient empowerment. And the more we learn to embrace these new global trends, the more empowered we'll be.

    Join me. Become an empowered patient. Become an ePatient. Let's all work toward changing the world together.

    Ryan Prior At Stanford Medical School (10/09/2014)

    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

    And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

    Continue reading the Original Blog Post
    ahmo, JAM, MeSci and 15 others like this.
  2. snowathlete


    Thanks Ryan, for your article and all the work you're doing.

    "I would argue that much of the solution to a patient population’s problems can be addressed through coalition-­building. Simply put, a community is stronger with the voices of many. And communities need all the allies they can get."

    I totally agree with this. I'm encouraged by the progress made in the ME/CFS community in the last couple of years and think further improvement in this area is essential to accelerating progress.

    I think patient empowerment will lag behind in places like the UK, where I live, because the health care system is different. Progress toward patient empowerment is not rapid here. My brother is a senior manager in the NHS and the system fails badly when it comes to chronic disease and doctors resist change toward patient empowerment, and modernization, thought there are efforts starting to be made to force progression. Probably we should push even harder for progress in the UK by uniting together.
    MeSci, justy, Simon and 1 other person like this.
  3. Simon


    Monmouth, UK
    Thanks, Ryan, for a really interesting perspective, especially how much we have in common with patients with other chronic illnesses. Sometimes it feels like we are a unique group with our own unique problems, and the nature of our illness makes it so hard to meet up with others to see what we share. Maybe we are uniquely isolated, though I doubt it.

    Stanford Medicine X sounds like an incredible experience - I'm glad you were able to go and give us a feel for what it was and what can be possible. And good luck with the film

    I wrote something here on ePatients: Time for a Patient Revolution. The perspective missing was about patients coming together to meet up in the flesh as you did at Stanford.
    MeSci, justy, rosie26 and 5 others like this.
  4. ahimsa

    ahimsa Rarely on PR now

    @RyanPrior, thanks for sharing that video of your presentation! It's inspiring to read about this program.

    Thank you for being an ME/CFS patient activist. I know that even in remission, doing better than many patients, it must be very difficult for you to put forth the energy to attend these kind of conferences, much less to present at one.
    MeSci, justy, Kati and 4 others like this.
  5. Gingergrrl

    Gingergrrl Senior Member

    @RyanPrior Thank you so much for all that you have done, and continue to do, to help fellow patients like me. I met you last Sun at the "End ME/CFS Project" event (where I'm sure you met a million other people!) but wanted to tell you again how proud I am to have someone like you representing us out there in the world when we are often too ill to do it ourselves. And I hope that you are continuing to take care of your own health which is priority #1 so you can continue all of your amazing work.
    MeSci, snowathlete, justy and 4 others like this.
  6. Kati

    Kati Patient in training

    Well done, Ryan! MedX was awesome to watch this year.
  7. Dreambirdie

    Dreambirdie work in progress

    N. California
    "I would argue that much of the solution to a patient population’s problems can be addressed through coalition-­building. Simply put, a community is stronger with the voices of many. And communities need all the allies they can get."


    Thank you Ryan, for all your great work on this.
    ahmo, Gingergrrl and MeSci like this.
  8. OneWaySurvival

    OneWaySurvival Senior Member

    Incredible work, Ryan! This is very encouraging and such a boost to our community.

    I plan to do a web search of Forgotten Plague or Blue Ribbon Foundation to learn more about your movie, but I thought it might be instructive for all of us here if you could tell us:

    How can we see and support your movie, now that it has been released?

    Also, what has the response been here in the first month? I have been looking forward to its release ever since you first wrote about it a couple years ago.
  9. Gingergrrl

    Gingergrrl Senior Member

    @OneWaySurvival Obviously I am not Ryan but saw your post and wanted to let you know that the film does not officially debut until it is released at film festivals in 2015. A working cut of the film was shown at the End ME/CFS Project event a few months ago but it still had revisions and edits to be made before it's release at festivals next year. Then it will be shown in towns across America and the world... :)
    Blue, Revel and Kati like this.
  10. 5150

    5150 Senior Member

    How many times have I said this , too?
    In our case, I remain Dumbfounded by the Lack of PUBLIC SUPPORT from the HIV_AIDS people. How in God's name do they even consider "not strongly supporting us" when They Are Alive because Many of Us Supported Them, way back in the early '80's? This is just plain wrong!


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