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SIIPC

Whaaa??  I am sure most who are reading this are wondering about the title.  This is the title of my most recent conference, the Summer Institute of Informed Consent.  http://siipc.org/program-2014/   It was held at Dartmouth College, and they generously gave me a scholarship to attend.  They understand and value the importance of the Patient’s Voice in the room.  There were doctors, lawyers, reporters, educators,  healthcare executives, nurses (oh, I LOVE nurses), patients and Patient Safety Advocates, just like me.  It was a gathering of about 150 passionate people who want better healthcare, but all focusing on Informed consent and Shared Decision making.

We learned about education tools, and approaches to SDM. We learned the history and saw example of SDM policies.   We shared ideas and concepts, and we networked.  The speakers were some of the most powerful people in healthcare, just plain brilliant people.  What the heck was I doing there?

I had an epiphany this morning.  I don’t talk about money too often, and I don’t generally whine, but although I was granted a scholarship, my husband and I paid to rent a car, get a room and have meals.  This conference cost us around $600.  That is quite a bit for two older folks on a limited retirement income.  My husband (who accompanies me to most of these conferences) and I paid to be part of this conference.  At the conference I was surrounded by some very rich executives and others.   Why do I do this?  Am I crazy?

No, I don’t think I am crazy.  If I don’t go, and the others who speak up as patients and for patients don’t go, the most important and powerful part of any healthcare conference is missing.  Lately,  all of the conferences I attend include patient speakers (often unpaid volunteers), patients on panels with experts, and patient attendees.  Organizers carefully choose strong patient advocate/representatives and donate scholarships, and sometimes expenses for these generous patient advocate volunteers to be part of the conversation.  I contend that our  increasingly large and loud voice is the most important and powerful presence at any of these conferences.

When  healthcare executives and leaders meet in exclusive expensive conferences without patients…..just exactly what are they accomplishing?  We patients often make leaders very uncomfortable, but we keep the conversations real and honest,  and isn’t that exactly why we are there?

Thank you to the SIIPC for  this intense and valuable conference, and for making me part of it.

 

  1. e-Patient Dave
    June 29th, 2014 at 13:55 | #1

    You’re not at all crazy, Kathy – you’re a pioneer.

    Thanks to pioneers like Lucien Engelen, who created the Patients Included badge, some conferences are FINALLY offering scholarships to some patient attendees. But you still have to donate your time, and travel costs – that’s next.

    As a speaker at SIIPC I got my expenses paid, but I too donated my time. (That’s something I rarely do – only once per quarter.) It was clear to me that this event is STRAIGHT up the center of the work we’re doing, and this event is pushing in the right direction. Plus, though I’ve been involved in SDM for 4+ years, I learned a ton that will help my own advocacy.

    Increasingly lately I’ve been thinking about far greater sacrifices some have made in other movements, when they decided things had gone far enough and they were not going to stand by any longer. 51 years ago this month Medgar Evers was assassinated (shot in the back) for his civil rights activism, and 104 years ago two women died, beaten by police, on Black Friday in London … marching for women’s suffrage.

    I’m acutely aware that my sacrifices are small in this work. I salute you for your steadfast participation, and your advocacy on this blog, I salute the conferences that are starting to subsidize patient participation (this conference didn’t break even, Glyn says) … and I see how very far we have to go.

    And it starts with work like this. Thanks for this sharing.

  2. June 29th, 2014 at 15:52 | #2

    Many thanks, Kathy Day for speaking truth to power and for continuing to invest in PREVENTION of medical harm. My experience with FDA/Patient Representative training, Mayo Clinic Social Media Summit, PCORI (Patient Centered Outcomes Research Institute), Stanford MedX- and others – that patient engagement outreach is marketed by healthcare providers but budget/reserve limited financial resources to provide conference costs/travel/per diem to make it happen for the patients that THEY SELECT. Harmed patients are already financially impoverished and rightfully intimidated by the medical credentialing hierarchy of conference organizers that suppresses the patient voice. Certainly these barriers can be lifted if the powers-that-be demand it. Requiring each participant to bring a local case study provided by actual patient advocates/harmed patients would begin the conversation.

  3. July 30th, 2014 at 12:44 | #3

    I read this the day you posted it, and cannot BELIEVE that I didn’t comment!

    LOVE that you bring up the $$ issue from the patient perspective. As the industry starts to recognize that we – experienced/expert patients – have some powerful insights that can help transform the healthcare system, we’re going to have to bring this up continually until those who want our input realize that we don’t live/travel on air.

    I myself literally bet the rent on attending SIIPC this year (didn’t pay the rent, bought gas and a hotel room instead), and came home to a legal Valentine from my landlord. All sorted out, but those are the kinds of decisions those of us on the patient side make constantly in service of our mission. Meanwhile, we’re surrounded by folks who have access to continuing education credit budgets and/or travel expense accounts …

    Onward. Together we’ll make it all work out.

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