At 2:00 a.m. New York time, a conference started in Athens, Greece: the second annual Patients In Power conference, created by powerhouse cancer patient Kathi Apostolidis. I want the U.S. to know what’s happening here, so the usual Twitter stream won’t do: most of it will be over by the time America’s online. So I’m going to live blog parts, so people can read later. Through the day I’ll blog about it occasionally. Here are the basics:

• Live stream on LiveMedia.Gr (with archive)
• The Patients In Power website (in Greek and English)
• Facebook page
• Twitter account: @PiPGr
• The #PiPGr Twitter stream on TChat
• Twitter analytics on Symplur

Later posts here today:

• European Charter of Patient Rights
• Eruption in the session on Cross Border Care

Patients more than Included

The badge at left is the symbol of the Patients Included movement, created by Lucien Engelen, director of the Radboud REshape & Innovation Center at Radboud University Medical Center. Its purpose is to put an end to conferences that propose to be for the benefit of patients, without including said patients in the conference.

The best known “all about the patients” conference is Larry Chu’s Medicine X at Stanford: patients are truly at the center, e-patients are advisors to the conference, and the conference subsidizes participation by patients. This conference in Athens goes even further: the organizing committee consists of forty patients  & advocates, and just one academic. Every single aspect of this conference was conceived, designed, planned and prioritized from the patient point of view.

I took the liberty of modifying Lucien’s badge. If his university’s lawyers yell at me we’ll deal with it. :)

Saturday: e-Patient Boot Camp

For more than a year, Kathi has wanted to bring my “e‑Patient Boot Camp” to Athens. This year she made it happen.

Saturday morning we’ll have a 3.5 hour training based on Let Patients Help, with plenty of interaction. (At both the Friday conference and the Saturday boot camp there’s simultaneous translation.) I anticipate assistance from the incredible Martha Hayward of the Institute for Healthcare Improvement – a cancer patient, accomplished health improvement executive and their guru of what they call “Public and Patient Engagement.” She’s speaking today, and I’ve been learning a ton, spending time with her.

And that requires, of course, having the book in the local language:

Let Patients Help – in Greek:
“Οι Ασθενείς Μπορούν να Βοηθήσουν”

I love that this movement is getting more momentum from individuals than it’s getting from the whole Society for Participatory Medicine – which I co-chair. (Gotta fix that!) In the Netherlands Lucien Engelen has created a Dutch translation of Let Patients Help, and in Budapest Bertalan Mesko created a Hungarian edition.

For this event, Kathi organized a team of volunteers to translate the book into Greek and get it printed – not in a fancy bound “real book” but in a saddle-stitched booklet. When someone translates the book for self-use, I don’t collect a royalty – what they do with it is up to them. (I just require that the message be translated accurately, so the message isn’t spread incorrectly. And if the book is to be sold at retail, we need to talk.)

This is Let Patients Help “on the hoof.” For real.

I have to say, being at this event is a little bit of a cognitive firehose – this is so different from other conferences, which are either managed for commercial purposes (the sponsors get to speak!) or for the benefit of researchers or some other party. For most such events, getting them to engage with patients is like pulling teeth: “Do we HAVE to? And why do they need financial support?? Most of our speaker don’t.”

Well, that issue doesn’t exist here, because this event was created bypatients. Nobody needs to explain to them how to view healthcare from the patient’s point of view.

Congratulations to Kathi and the large network of volunteers and sponsors she has assembled.

 

Major updates made Sunday 10/6.

Today I had a rare privilege and challenge: I spoke to a kind of audience I’d never addressed before – the World Parkinson Congress in Montreal. I was one of four speakers in a two hour session “New Views of Managing Parkinson’s Disease”; we each had 25 minutes plus Q&A. Above is a photo I took from the stage – a big hall at the Palais de Congres, with over 2,000 in the room.

I composed a talk about patient empowerment (in the context of Parkinson’s) based on things I’d learned about the disease community – and, importantly, research issues – from two good friends with the disease, Sara Riggare of Sweden and Perry Cohen of DC. They must have coached me well, because four times I was unexpectedly interrupted by applause. It was webcast, and video of the session should be published in a day or two.

One item I noted in the talk was a brand new, magnificent book [right] that was launched at the conference, conceived, written, edited and produced entirely by patients. In my view this book is the instant exemplar of how patients can define their disease to the world: the experience of getting the diagnosis, exploring treatment options with each other, coping with life with the disease, and much more. It’s a gorgeous, browsable, full color coffee table book – you can jump in anywhere. More on this book later.

Here’s a version of today’s slides, modified to be more understandable without the audio:

There was enough interest that we added an unscheduled breakout session in a side room – thanks to organizer Eli Pollard for her quick response!

The unplanned session truly had no plan – we started talking and taking notes. In a sense this was an example of a point I make frequently: patients know what patients want to know. It was great to see the fire and hope in the eyes of these patients and caregivers who want so much to define the future on their own terms, given the constraints of the future they own. I took notes as we talked (using the room’s projector) and promised to publish them.
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