Not that long ago, a colleague said to me, “Ted, we can’t find a patient to be present at upcoming event x.”
I thought, “Out of 307,006,550 possible people in the United States, you couldn’t find anyone?”
I’m being hyperbolic; that’s not what they meant. They meant, a patient who’s available, interested, passionate, a good fit for an audience, can leave their job and family responsibilities, etc etc.
So really, the question wasn’t “does a patient exist in the world?” The question was, “Can we enter into a respectful relationship with another person who will teach us about their experience,” which we can now answer, “yes.”
Regina reminded me that my question about this was recorded by Dave deBronkart in 2009 (see: A Call for a Patients Speakers Bureau)
So now SpeakerLink exists, and it’s in full operation now. It has an engine to review potential speakers’ capabilities, requirements, and stories and enter into a respectful relationship where their contribution of time and passion is valued. In my initial complaint to Dave, I said that everyone at the meetings was getting paid to be there – except the patient.
SpeakerLink will reduce the friction of finding “the patient.” It will also broaden the field of patient speaking. All the rockstars I know are there, Regina, Sorrel King, Sue Sheridan, Dave, Trisha , as well rockstars-in-training like Kait .
What we could also see is any patient getting the chance to describe what’s needed for them to take time away from other responsibilities to share their experience. It could be a day off work and a taxi-ride (or in DC, Capital Bikeshare ). There hasn’t been a place to put these requirements together before so no matches could be made beyond the patients/people who are the most dedicated to being heard.
The network of speakers on SpeakerLink is actually patients AND professional caregivers and healthcare leaders – Regina’s gone through all of the design decisions in detail on her blog here. The site is not profit generating, and when registration fees are instituted in April, 2012, the proceeds will go to help other speakers get started. I believe all of this, because I was there in that room with all of the cameras rolling talking about it (see pic: http://flic.kr/p/9RGpBw ). Those were big cameras :).
As Regina describes it to me, there are literally hundreds of details that impact a patient/person’s access to the podium that a health professional, with an advanced degree working in a marquee organization, takes for granted. This is also what SpeakerLink is managing behind and in front of the scenes.
Speaking of which, my next assignment is to write a letter of reference for Regina’s past work with my organization. It apparently has to be an actual letter because some health care organizations are unable/afraid to click through to hyperlinked content. I have an image in my head of a paper letter being part of the ramp onto that bridge that Regina talks about….