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The year of doing: How participatory medicine movement went from discussion to action at MedX

Stanford’s Medicine X is a catalyst for new ideas about the future of medicine and health care. This new series, called The Engaged Patient, provides a forum for some of the patients who have participated in or are affiliated with the program. The third installment in our series comes from Medicine X advisor Nick Dawson.

Dawson MedX imageSomebody has to do something, and it’s just incredibly pathetic that it has to be us - Jerry Garcia

There’s a danger in comparing moments. Each is unique and has its own players and own goals. But, as counterculture movements go, what’s not to love about the hippies of the 1960s?

In our current age, ePatients are the collective leaders of the counterculture movement around patient empowerment. ePatients are to health care what the protesters, artists and freedom fighters of the Sixties were to the establishment, man. For the last few years, ePatients - empowered, engaged, activated hackers of health care - have made their demands known. We want to be in the rooms… nothing about me without me…. There is even ePatient activist art, like Regina Holliday’s Walking Gallery.

And, like any good movement, the ePatients are chipping away at the status quo. Today, we are moving past the sit-ins, and the protests, and the fiery speeches. The art is evolving. And - gasp - we’re building bridges.

Medicine X, the annual anchor event for the comprehensive patient-designed academic health care conference for everyone, has become the convening for people who are like-minded about this movement. This year, at MedX, it was clear we’ve moved into age of doing. The protests are over. Now the movement is focused on people who are making, hacking, building and creating new things.

One of my favorite examples from MedX 2014 happened about two hours after the conference officially ended. A group began to amass around a poolside table at the nearby hotel. Reflecting on the event, Rachael, a student, pipped up: “I just feel excited to fix things, to make things better.” Sitting next to her, Jon, a designer, responded: “Ok, then let’s make something. Right now.” Amy, a pharmacist, was ready: “I’ve got this problem. I do Skype consults with patients, but I can never read their pill bottles.” A few patients broke off from their conversations. Heads popped up. Chatter quieted. Ideas were hatched.

Dawson MedX image2Five minutes later, a group was in a rental car speeding towards the closest Target store. Thirty minutes later, the group was back and our poolside table was covered with kids toys, modeling clay, super glue and various trappings from the dollar isle. Boxes were ripped opened. Hands were moving. There was a flurry of cardboard, clay and a motor ripped from a Cinderella jewelry box.

A few minutes later, the group had a working prototype. A pill bottle, made out of children’s bubbles, sat rotating atop a platform made of a bubble gum container and children’s jewelry box. Six inches away, a phone in a cradle was propped facing the pill bottle. Across the pool Amy, the pharmacist, held her phone and shouted, “I can read the label on the pill bottle!”

Never, during any of that making and building, did anyone stop and say, "Oh, you can’t help build this. You're a patient." No one said, "Well, since I’m the one with the PhD here, I should lead the design."

The impromptu design session began with the energy of an ePatient. It grew and spread to encompass multiple people from within and outside of healthcare. Credentials didn’t matter because the movement has gone beyond the arguing stage. We are in the year of doing. Patients and other professionals are working alongside one another to create the next stage of the movement; and that’s a pretty revolutionary thing.

Nick Dawson, MHA, is a proponent of human-centered design in healthcare. He leads the Johns-Hopkins Sibley Innovation Hub as Executive Director of Innovation. His past roles include hospital leadership of departments including strategy, finance and operations. Nick is an advisor to Stanford Medicine X and is the president of the Society for Participatory Medicine. He skis in the winter, runs most days and is forever restoring his antique Land Rover. His Twitter handle is @nickdawson.

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