There are stages of any movement, and make no mistake, the shift to participatory medicine is a social movement, a full-bore cultural movement. It’s a change in roles, a change in expectations, a change in beliefs about the validity of a new party’s perspective – in this case, the patient’s.
I’m fond of pointing out milestones, the turning points in our movement. One was the founding of the Society for Participatory Medicine in 2009. Another was when patient voices started to be invited to speak about patient issues in Washington policy meetings. Another was when the Institute of Medicine said in 2012 that a cornerstone of medicine must be “Patient/Clinician Partnerships” with “Engaged, empowered patients.” Then the OpenNotes project, the BMJ editors announcing their Patient Advisory Panel, the founding of the Patient Voice Institute last year … all are signs of the movement maturing and gaining acceptance in the establishment.
Today I’m thrilled to announce a small but significant step in another dimension: NEHI, the Network for Excellence in Health Innovation, has offered me a Fellowship in Patient Engagement – a part time six-month project, advising them about patient perspectives.
Here’s NEHI’s vision map – click it to visit their site. And note what’s at the top of the circle: Evidence, Action, and Policy Impact. My kind of people!
Now the work starts. May this be the start of many such initiatives in many organizations that focus on improving healthcare!
For the record, here’s the 55 minute video of my keynote at NEHI’s 2013 annual meeting … as it says at the outset, this was a new approach: a new beginning and a new ending.
http://vimeo.com/76960537
Thank you, NEHI, for your vision, and let’s do this thing!
Super cool, Dave! Looking forward to more patient-origin evidence, action and impact!
Thanks, Francie!
Congratulations, Dave! NEHI has selected well. Can hardly wait to see what breakthroughs will result from this collaboration.
Hi Dave, watched this great “Oratorial Jazz” speech and wonder who are the organizers of the SDM conf you talked about that had no patients?
Hi Kathi – thanks for asking.
That company was the World Congress conference production company. They are all promotion and no value; they suck things out of other people for free and then sell it to the public, talking about it as if they had the idea.
As you know from reading this blog, I don’t often identify people who exemplify medicine’s problems, but this company is so bad that I’ve mentioned them twice.
In my now-famous >ratty boxers post here’s what I said about them:
There were several tweets about it at the time, including the news that after announcing that nurse & patient @KathyDayRN would be a speaker, they cancelled her session when she asked to have her mileage reimbursed! To me this is a clear sign of either business incompetence (can’t even afford to pay speakers’ mileage) or utter disrespect or both. (Another tweet pointed out that most MDs speaking were executives, not front-line working doctors.)
I mentioned it again in Speaker Academy #13, adding “Then they went and got those people to speak – for free, I’m sure, while advertising that they’d convened a summit on the subject.”
My biggest disappointment about the conference, though, is that its primary sponsor was the Informed Medical Decisions Foundation (formerly FIMDM), which as you know had heavy patient involvement at the Salzburg Seminar where you and I met. Something apparently went far downhill in FIMDM’s final years before they were acquired by Healthwise – either that or FIMDM let its name be used for promotion on a conference that didn’t adhere to its principles.
I forgot to add the link to that event on the FIMDM page – it doesn’t exist anymore on the World Congress site.
Dave, I recall all this story now that you mentioned it… However, I am really surprised FIMDM made such a turn on their values. Times are changing…They do mention though their participation in Salzburg Global Seminar as a “key moment” (http://www.informedmedicaldecisions.org/about-us/foundation-history/).
Healthwise from what I saw on their website sell patient engagement content and solutions to health care providers and other institutions. As for the conf mentioned, its page does not exist any longer but from what I gleaned online World Congress is a business for organizing medical conferences.
Anyway not that close to the essence of Salzburg Global Seminar, at least as we still understand patient-centered care and non-profit on our side of the pond.