All, if you have a story where you were affected by being involved (or not) in a medical decision, please see my request at “Help Me Represent You” below. Same if you have points you want me to bring to this seminar’s attention.

I feel extremely fortunate to be attending a five-day Salzburg Global Seminar, in Salzburg, Austria. I find myself hesitant to write about it, because on the one hand I’m excited about the few people I know who are on the faculty, but I’m completely ignorant about the others. So anything I say would be an incomplete description. But hey, that’s part of blogging by just plain citizens, right? So here goes – give me your thoughts, in comments, so I can represent participatory medicine.

History and context: Salzburg Global Seminars began in 1947, as an initiative to restore Europe after World War II. They host seminars on many topics. This event is the second of a three-part series on healthcare.

For me this event resonates: it’s a sequel to a pivotal moment in patient-centered care – a 1998 Salzburg Seminar, where 69 people from 24 countries created a vision of what healthcare would be like if there were no constraints. It led to the 2001 paper in Health Expectations, “Healthcare in a Land Called PeoplePower: Nothing About Me Without Me.” I wrote about it on my personal blog last month. The paper is a phenomenal, prescient description of what we’re now calling participatory medicine, except way more pervasive throughout society.

Venue: The location is Schloss Leopoldskron, the 18th century palace of Prince Leopold. It’s the palace where Sound of Music was filmed. I’m there now – it’s beautiful, and I hear there are mountains nearby, if the fog ever clears. (Ahem.)

This event is titled “The Greatest Untapped Resource in Healthcare? Informing and Involving Patients in Decisions about Their Medical Care.” As my post says,

The first phrase alludes to an expression made famous by Charlie Safran MD, of Beth Israel Deaconess, when he testified in 2004 to the House Ways & Means Committee’s subcommittee on health: “the most under-utilized resource in our information systems – the patient.” I recently learned it was first said years earlier by his colleague Warner Slack MD. Both of them were early mentors to Dr. Danny Sands, my primary physician.

Bluntly, these guys have been working for decades on empowering and enabling patients to be engaged in their care, and it’s a thrill to be connecting with them and moving the ball forward.

The event is organized by FIMDM,  about whom I wrote in September, saying “You can’t be well empowered if you hear advice wrong. That’s why, in a participatory relationship, an essential skill is accurate handoff of information.”

This is one of the great big challenges in informed decision-making: If you tell someone something, and they hear it differently, what’s been accomplished? This messes up interpersonal conversations all the time (don’t tell me you don’t know some crazy people), and when it’s a matter of healthcare, the consequences are important.

FIMDM may be the least-known important source of healthcare improvement work. They’ve been doing all kinds of good things for years, almost in “stealth mode,” as we’d call it in high tech: hardly anyone’s heard of them. They’ve been involved in developing patient training/decision aids to help with decision making, and they sponsor Gary Schwitzer’s Health News Review, which we’ve written about numerous times.

Faculty

The seminar’s faculty includes some names I know, and a lot I don’t. This is where I get embarrassed, so I’ll just list the ones I know:

Jack Wennberg of Dartmouth (Wikipedia), one of the pioneering thinkers who first pointed out “practice variation” – the reality that although we think our doctors are all driven by science, there are wide variations in how often things are prescribed. His new book is Tracking Medicine.

Gary Schwitzer (@GarySchwitzer), cited above, of Health News Review (@HealthNewsRevu).

Gerd Gigerenzer, lead author of a terrific e-patient training article on making sense of health statistics. Here’s our post about it from two years ago.

Susan Edgman-Levitan of the Stoeckle Center for Primary Care Innovation at Mass General.

Among participants, I’ve already met Greek Twitter friend (and member of the Society for Participatory Medicine) Kathi Apostolidis (@KGApo and @eHealthGr).

Hairy, complicated issues.

Until I started doing the pre-reading (see the whole list at bottom), I had no idea about these issues:

  1. A lot of work has already been done in shared decision-making (“SDM”). (To listen to us bloggers and most patient advocates, you’d think SDM is nothing but a glimmer in dreamers’ eyes. E-Patients need to spread the word and train each other about this!)
  2. It’s a hairy subject. If you believe (as I do) that patients have a right to know what their options are, including the pros and cons, you quickly bump into questions:
    1. Who gets to say what the pros and cons are? The AMA might have one opinion, but another medical association might feel differently, and patient communities might have another (or several).
    2. How do you convey the pros and cons to everyone at every level of geekiness, and every level of access to technology? I had breakfast today with people from the Philippines and China, whose constituents don’t all have access to resources we take for granted; many don’t even have fundamental education.
    3. If you develop good patient education materials, how do you finance keeping them updated? There’s always new news – that’s where Health News Review comes in: it’s really important that we keep training our science journalists on good critical thinking.

This is real feet-on-the-street work, getting serious about patient participation.

Help me represent you.

Do you have a story about sharing (or not sharing) in a medical decision? Please share it in a comment on this post, so everyone at the seminar can see it. Or email it to me – dave at epatientdave dot com.

My thanks to:

Rob Kolodner MD, who until David Blumenthal came along was the US National Coordinator for Health IT. Rob’s big on patient-centered open source software, and he tipped me off to this event. Rob and I were introduced by awesome DC friend Cindy Throop (@CindyThroop.)

FIMDM for sponsoring my participation with a scholarship.

– A generous donor, Douglas Drane, for travel funds. Among his many achievements in life, he’s the father of TEDMED speaker Alexandra Drane, founder of the Engage With Grace movement.

As always with patients, it’s still costing me (and Kathi) 10-14 days of unpaid time, but we’re all working on changing that: how can policies be truly patient-oriented if ordinary patients have to pay to participate?

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