Yesterday, in an email to our Society’s membership, Regina Holliday announced an amazing event that will happen as summer ends. It arose out of an episode with the “Partnership For Patients” program, whose title many of us felt revealed a too-paternalistic attitude. (“We’re here for you, patients – we over here are partnering for you over there.”)
Regina’s response was to propose that it should be a partnership with patients. In a remarkable story of a cascade of events, she built bridges, communicating powerfully with the powers that be, and now this.
The full story is in her blog post on her own site; here’s the part about the new event. (All details are being worked on – there’s noplace to ask questions, yet, but we’ll keep you informed.) Here it is:
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… I also announced that we were creating our own Partnership With Patients Summit in Kansas City September 21-23, 2012. I spoke with Clay Patterson and Amy Burgess at Cerner and the folks at Cerner have approved hosting us in their continuing education facility on the Riverfront property and former address of Sam’s Town Casino in North Kansas City.
I loved that facility when I visited it one year ago. Think Kaiser Permanente Center for Total Health, but even cooler, with more neon lighting, a town square and some music from Tron. Some of the Cerner team looked at me quizzically when I told them how much I loved the space, they said, “You do know this is just an old failed casino, right?”
But I see with new eyes. I see it with the eyes that saw cinderblocks become bookshelves.
I see what can be without old prejudice. When I look at Cerner I don’t see an old legacy EMR system. I see a future cloud/ legacy composite that could save lives. I see one company among many, many companies willing to collaborate with patients. I see what amazing things we can accomplish if we all work together and shoulder this task. I see a space where we can come together and educate patient speakers about HIT, patient safety and health policy. I see the potential of helping 200 new patients advocates as the next generation of e-Patient Daves, Trisha Torreys and Regina Hollidays.
So here it is the ask: Who will take up their cinderblock and follow me?
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Please do read the entire post about how this all came up. It’s a remarkable story.
This is something I would LOVE to attend, but it coincides with another conference I’ll be at (www.tcoyd.org). :(
Regina is a power of nature! What an example of courage to speak up, take the initiative and acomplish what one has at heart! I will be quoting Regina’s story and all she has acomplished so far, as an example of patient advocacy at the European cancer patients coalition masterclass on Sunday.
Sorry i don’t get it? Why are people so focused on ehr’s? There are already huge national patient advocacy organizations are you working with them? What is the goal?
Bones, this isn’t patient advocacy per se – we have many friends in other organizations, and lots of joint memberships. Our goal is to transform the patient’s *role* in medicine – see http://www.participatorymedicine.org.
We’re so focused on EHRs because, as Regina’s blog (see link above) explains so powerfully (and this site has discussed for years), being engaged with our medical records is a good thing. The record may contain errors (sometimes lethal), or (as in Regina’s husband’s case) orders that were never completed; and in any event, it’s better all around if the patient and family know the status of the case.
Dear Bones,
It is a really long story why individual advocates/ activists take up this kind outreach here you go:
I take on the AHA stance on Meaningful Use, because as an independent change agent I am not worried about losing funding
http://reginaholliday.blogspot.com/2012/05/lives-not-livelihoods-in-meaningful-use.html
Why we cannot depend on large patient advocacy orgs alone: http://reginaholliday.blogspot.com/2012/05/three-years-ago-i-began-to-live-my-life.html
Why I began Partnership with Patients http://reginaholliday.blogspot.com/2012/05/pecking-order.html
thanks, Regina
Awesome! I am over in the US at that time and will try to make it to Kansas(?!?), if you will have me. Ready, happy and able to help out anyway I can :-)
I am so glad to hear you might be able to make it.
Power to the Patients! There are no words to describe just how ground-breaking this Partnership With Patients is going to go! I can’t wait to further be a part of this movement!
Look forward to hear about the preparations and how it will develop! Would love to organize something similar on the other side of the pond!
That would be great Kathi!
Here is the eventbrite link: http://partnershipwithpatients.eventbrite.com/ to register.