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 Holiday, 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.

Michael L. Millenson is president of Health Quality Advisors LLC in Highland Park, IL; the Mervin Shalowitz, MD Visiting Scholar at the Kellogg School of Management; and a board member of the Society for Participatory Medicine.

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13 Responses for “Will “Partnership” Meeting Propel Mass Movement?”

  1. Michael – Eloquent recap and analysis. In particular two of your points captured exactly how I felt: “The focus was on constructing something new, not just complaining about the old” and “…laughing, crying and hugging are more powerful as emotions rather than as emoticons. It is how the participatory medicine movement will be built.”

    Thank you for the mention above. As I reflect on the weekend I am so grateful we had a chance to be part of it. And I also stand behind my belief that to effect change you have to equip those who want to help you and have the resources to do so with tools, tangible steps, concrete ideas.

    BTW, it’s apt you posted this blog here. When I left PWP I felt that I was a witness to the beginning on the next Health 2.0, only this time Patients 2.0.

  2. This is already a mass movement. You have only to read any family-oriented magazine to know that patients are being told HOW to participate in their own health, not just that they must. Too many tales of poor outcomes and poor communication paired with the internet have democratized access to information previously hidden from us.

    When I explained to a 93-year old friend that my mission was to get more patients to partner fully with their doctors, she said that every letter from her insurer and doctor gives that message. This is beyond the tweeters and the politically connected. And now we must indeed offer solutions.

    There are no single and simple solutions, but many answers to the many questions. All are based in the basic right to our own data, presented so as to educate and empower the patient. From that will come the expectations of treatment , coordinated and communicated between all partners.

  3. Peggy, I think your comment is very important, but I’d add a caveat.

    You’re right, of course, that the new zeitgeist is for patients to partner more fully with their doctors. But, as you know well, when a health insurer and doctor and employer give that message, they may or may not mean the same thing that a patient does. With all the best intent in the world, they may think of partnering as, say, better compliance with the doctor’s orders or being a better shopper.

    Kind of like everyone’s in favor of “freedom,” but some folks have very different definitions of what that entials.

    What is not yet a mass movement is the kind of broad definition of participatory medicine as it is understood by advocates and leaders i this field.

    MM

  4. BobbyG says:

    Lawrence and Lincoln Weed, “Medicine in Denial” pp 224-227

    “The course of a chronic disease depends on numerous variables, none of which the practitioner personally experiences, most of which the practitioner does not control and some of which the practitioner is not aware. In diabetes, for example, blood glucose levels depend on not only insulin levels but also diet, exercise, emotion, medications, infections and co-existing medical problems, among other variables. The patient has more knowledge and control of some of these variables than the provider ever will. Managing chronic conditions demands keeping track of these variables over time and examining them for medically significant patterns and relationships. The provider’s expertise is limited to textbook generalizations and limited personal experience with other patients, neither of which is sufficient to cope with detailed data and arrive at individualized decisions for the patient at hand. Those decisions require expertise that resides only in that patient, feedback that only the patient can recognize and act on, and external tools that the patient has more time and personal incentive to carefully use than most providers. The patient feels the effects “In some delivery systems, patients can view their own test results (including abnormal ones) online without having to wait for the physician to ‘release’ them. Many clinicians have already had a patient notice an important abnormality that they had overlooked in a laboratory of the disease and its treatments, and quickly sees correlations between those subjective symptoms and detailed data on physiological parameters. Without any formal education, the patient is in the best position to observe these correlations. To that extent, information asymmetry exists in favor of the patient, not the expert provider. What the patient needs is not the broad, sophisticated scientific understanding of a physician but rather a basic understanding of principles and data that bear specifically on choosing among individually relevant options. And it is not unusual to see patients who develop more than this basic understanding. For example, diabetics of long-standing whose disease is well-controlled are frequently more knowledgeable about the disease and their personal version of it than their physicians.

    Most of all, the patient is the one who must summon the resolve to make the behavior changes that so often are involved in coping with chronic disease. If the patient does not feel responsible for deciding what has to be done and is not heavily involved in developing the informational basis of that decision, then very often the result is “noncompliance” with doctors’ decisions. Noncompliance may or may not be appropriate, depending on the situation. The point is that if patients are equipped to become decision makers, the problem of noncompliance with their doctors’ decisions is transformed into a problem of personal commitment to their own decisions. Patients will be more committed to their own, informed decisions than to decisions made for them by experts.

    Patient autonomy in this scenario does not mean that patients make difficult medical decisions on their own, without involvement of others. Rather, as in other areas of their lives, patients exercise personal judgment after turning to (or being confronted by) trusted parties (family, friends, co-workers, practitioners) who provide dialogue, guidance, feedback and emotional support. Some patients will still choose to defer heavily to practitioner judgments, especially where the issues are more technical than personal, but that deference should be the patient’s choice.

    Patient autonomy does not mean that patients may choose whatever medical care they wish without regard to cost or medical necessity. Patients, providers, and third party payers should not be able to impose medical or financial decisions on each other unilaterally. Checks and balances are needed, including a system for adjudicating disputes…

    …In short, patients themselves are the greatest untapped resource in the health care system. There is one for every member of the population. And they are the best positioned, in terms of personal knowledge and motivation, to manage chronic disease and make decisions in the face of genuine medical uncertainty. But for the health care system to take full advantage of this resource, the educational system will need to change…’
    e

  5. Kait Roe says:

    FYI, Michael, I think you captured day one brilliantly, though on day 2, we had an opportunity (and took it) to decide the next steps. We talked about what our goals should be, how to define patient, what we expect when we are at the table and what we can do to go forward. The process was not finished, only just begun and Churchill was right it is the end of the beginning. And Bunny nailed it too, this is the birth of Patients 2.0. Many of us have other jobs, or other roles, and we need to make a living doing those things. This is not on the back burner, but the tasks we have in front of us will take collaboration, cooperation and TIME. We have the spark, we have a core of people committed to a process… a small glowing force who will eventually light the way to more patient centered care.

  6. Nicely put, Kait. Thanks for filling in Day 2 (when “conference” turned into Health Camp) and the broader perspective.

  7. Bart Windrum says:

    Michael,

    During our brief conversation in Jari’s car en route from the airport to the hotel you mentioned having read the 7 sins in the original Hebrew, and that the various religions expressed them differently from one another, at the least in a different order.

    We’ve got ourselves at least a seven-limbed creature here (I’m not really counting!), and by that clumsy metaphor I mean to say that we’ve got a big rumbling core and a lot of potential directions to move in.

    I can’t understate the value of coming together in real spacetime. In December 2010 the Institute for Healthcare Improvement convened in Orlando 50 “patient activists” selected from 100 who applied for the scholarship for their Patient Activist Leadership Summit. It was unclear at that time what, if anything, would develop from the gathering and IHI provided no more than the ability and opportunity to convene. I think that Partnership With Patients is likely something that the folks at IHI had in mind: we did it ourselves. Some fraction of PWP formulators, enablers, and attendees were among the IHI PA cohort. So there’s some lineage.

    We are now beginning to take matters into our own hands. Sunday included a session (which I had to forego due to other interests, an impossible choice we were all faced with throughout the weekend) which I caught the tail end of, focusing on next steps such as defining who we are and how to identify, as a group, individuals who might represent PWP well at this or that institutional gathering going forward, including providing the funds to get to and fro.

    And, you missed davecornthwaite.com, who came ashore in the middle of his 1000 mile swim down the Missouri in support of breast cancer awareness to merge his effort with ours—he should be emerging at St. Louis wit a Holliday Jacket on his back! You couldn’t make this stuff up in a million years…

    On a personal note, if you send me your email I’ll send you a copy of the dying terms matrix since we ran outa time before you left to hobnob about it.

  8. I’m at mlmillenson@gmail.com, for anyone who wants to communicate directly.
    And Bart, just to be clear: there are no “7 Sins” in Judaism (though there are 613 commandments, so many opportunities). I was referring to the Ten Commandments, which are not called that in the Torah itself by Moses or by God.
    A whole different discussion.
    Glad to hear the movement is moving!
    Michael

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