Pioneers of patient engagement

Credit where credit is due.

The Danish Medical Association’s annual meeting is coming up in a few days. For the event’s blog, they requested a post about patient engagement! I wrote about the pioneers at my hospital who for many years have been saying that patients are the most underused resource in healthcare.

The post is here.

The post names the doctors I know of who mentored my own physician, Danny Sands. I know they’re not alone; what other clinicians (doctors, nurses, anyone) should be recognized as participatory pioneers? I’d love to build a list – maybe someday there will be a museum of participatory medicine. :–) Name them in comments please!

(p.s. I often say “Patient is not a third person word. Your time will come.” Indeed, this post came about because of such a moment. On April 11, Dr. Danny Sands and I spoke at a meeting of the Danish patient safety association. In the audience was Dr. Mads Koch Hansen, newly elected chair of the Danish Medical Association. He told us that our story of participatory medicine reminded him about a family episode of his own, when his young daughter was very sick while they were far from home on vacation. He understood why patients want to help in every way they can.)

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Comments

4 Responses to “Pioneers of patient engagement”

  1. Joe McCarthy says:

    Dave: are you looking for doctors with whom prospective commenters have had direct experience, or is this a broader call for names of / links to doctors who we may have heard or read about indirectly?

  2. Joe McCarthy says:

    Here are some pioneers that come to mind:

    Bernie Siegel, MD, a surgeon at Yale New Haven, who wrote Love, Medicine and Miracles (1986), and founded the exceptional cancer patients (ECaP) program in 1978:

    a specific form of individual and group therapy utilizing patients’ drawings, dreams, images and feelings. ECaP is based on “carefrontation,” a safe, loving therapeutic confrontation, which facilitates personal lifestyle changes, personal empowerment and healing of the individual’s life. The physical, spiritual and psychological benefits which followed led to his desire to make everyone aware of his or her healing potential. He realized exceptional behavior is what we are all capable of.

    Arthur Kleinman, MD, a Harvard medical anthropologist, who wrote The Illness Narratives: suffering, healing, and the human condition, (1988), in which he argues:

    the interpretation of narratives of illness … is a core task of doctoring. … Morever, interpretation of the narrative of illness is something that patients, families and practitioners need to undertake together.

    Herbert Benson, MD, a Harvard Medical School professor, who wrote The Relaxation Response (1975), which was my first exposure to the mind-body connection, and the idea that I can be a more active participant in healing myself through consciously counteracting the stress response that often accompanies illness and injury.

    • Interesting, Joe. I hear you identifying the mind/body aspect of engaging the patient, which was the genesis of the impish attitude in my approach to my condition (“laugh, sing, and eat like a pig”), which to me supplemented the medical care I was to get. And before other options developed, my family was going to send me to Bernie Siegel’s Exceptional Cancer Patient workshop.

      As I think you know, mind/body thinking runs all through the book, which was extracted from my journal at the time. (I don’t make much money on the book, so I’m not selling it here, just reflecting on your note.)

      In my post I was specifically talking about inviting docs inviting patients into the medical aspect of the case, too. But this counts, on a different dimension. And it sounds like Kleinman’s narratives aspect is part of what I experience on ACOR: sharing and connectedness with others like me.

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