By Michael Millenson

First Posted at The Health Care Blog on 9/27/2012

Michael Millenson, President of Health Quality Advisors

Is participatory medicine poised to become a mass movement? A weekend gathering of patient activists and supporters at a “Partnership with Patients” conference this past weekend offered some important clues about opportunities and obstacles.

The meeting was conceived and created in a matter of weeks by artist and activist Regina Holliday, with a little help from a lot of friends and an offer of a casino-turned-corporate-meeting-center by Cerner Corp. in Kansas City. But this meeting was unusual for reasons other than location. It was not patients protesting the high cost of care or barriers to access or the slow progress of research into their disease. Instead, they were trying to transform the way doctors and others throughout the health care system relate to every patient with every disease.

What was even more unusual, perhaps even unique in the history of medicine, is that they were joined in partnership by health care professionals – doctors, nurses, information technology specialists, medical communicators and others. The focus was on constructing something new, not just complaining about the old.

Most memorably, this meeting reverberated with the power of personal stories. Regina is an artist, and the conference at times resembled the embodiment of stories she has told with her art. It seemed most of the 60-some attendees were part of Regina’s Walking Gallery, wearing jackets she’d hand-painted with scenes emblematic of the wearer’s personal experience: the death of a parent or a spouse, the illness of a child, a fight against medical bureaucracy or the burden of personal disease.

Activists accustomed to being lonely voices crying for change mingled with others who were like-minded, made common cause and laid a foundation, perhaps, for speaking with one voice.

The importance of the personal connection cannot be overstated. Writing in The New Yorker on social activism two years ago, Malcolm Gladwell quoted Stanford sociologist Doug McAdam on a key predictor of which individuals became part of the Freedom Rides in the summer of 1964. The key element “was an applicant’s degree of personal connection to the civil-rights movement.”

Yes, many of this conference’s attendees knew each other from email or Twitter, but laughing, crying and hugging are more powerful as emotions rather than as emoticons. It is how the participatory medicine movement will be built.

A second accomplishment was moving from sharing common sorrows to building common skills. Testimonies by activists were supplemented by tutorials on giving an effective speech, using social media, dealing with journalists and other topics.

Third was a glimpse of what the future might be in health information technology. Cerner provided tours of its Innovation Center and showed how remote monitoring, a personal health record and an interoperable electronic medical record might be tied together to improve care and lower cost while keeping patients and their families at the center. How the dazzling scenario in the company’s headquarters campus will play out in the real world remains to be seen. Still, on the tour I was on, the guide handled a barrage of pointed patient advocate questions with aplomb.

But other than seeing Cerner’s solutions, this conference was weak was on consensus about its own. In one breakout session, Bunny Ellerin, a senior vice president of InTouch Solutions noted, “When patients tell their stories, they need to tell us what to do about it.” At this conference, each presenter typically did have a solution for the problem addressed in that session ¬– for electronic data access or patient safety or better end-of-life care – but those solutions were surfaced briefly and then disappeared.

I’ve asked whether Regina will become health care’s Rosa Parks, in light of her protest against the American Hospital Association’s hostility to quick electronic medical record access by patients. She certainly may. But while Rosa Parks struck a powerful blow for civil rights, she didn’t organize the movement. That organization still awaits, and as an executive committee member of the Society for Participatory Medicine, one of the meeting co-sponsors, I hope we step up to assume that role.

Still, these are cavils more than serious caveats. This was a meeting put together on a shoestring budget with crowdsourced financing by passionate volunteers in a short period of time. Participants, including presenters, gave up their weekend and paid their own way. It was important that it succeed, and it did. After the meeting ended, two quotes struck me about this movement’s purpose and possible near-term future.

The first quote was from tweets on a presentation by Eunita Winkey, a patient activist: “Teach, advocate, save lives.” The second was one that came to mind from Winston Churchill after the Battle of Britain in World War II. “This is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.


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