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Updated 3/12/2014 with new links at bottom.

One of my personal pleasures in the first year of the Society for Participatory Medicine has been discovering people in other parts of the “patient culture” who’ve been doing wonderful, empowering, participatory things for years – and who’ve already been producing valuable results for years. Example: the patient safety movement.

On Paul Levy’s blog I learned about Linda Kenney, founder of MITSS; I met her and wrote about her here. Through her and others I met folks from the National Patient Safety Foundation, and especially its Lucien Leape Institute, which published a major report this month with a solid systemic look at cultural challenges in paternalistic medicine. Even got to be in a small group workshop with Lucien himself last fall. (Didn’t know who he was, but I thought “This guy knows his stuff!” Funny.)

Sometime this winter I got my hands on this magnificent NPSF document. Any of it sound familiar?

The Universal Patient Compact
Principles for Partnership
© 2008 NPSF
As your healthcare partner
we pledge to:
As a patient I pledge to:
Include you as a member of the team Be a responsible and active member of my healthcare team
Treat you with respect, honesty and compassion Treat you with respect, honesty and consideration
Always tell you the truth Always tell you the truth
Include your family or advocate when you would like us to Respect the commitment you have made to healthcare and healing
Hold ourselves to the highest quality and safety standards Give you the information that you need to treat me
Be responsive and timely with our care and information to you Learn all that I can about my condition
Help you to set goals for your healthcare and treatment plans Participate in decisions about my care
Listen to you and answer your questions Understand my care plan to the best of my ability
Provide information to you in a way you can understand Tell you what medications I am taking
Respect your right to your own medical information Ask questions when I do not understand and until I do understand
Respect your privacy and the privacy of your medical information Communicate any problems I have with the plan for my care
Communicate openly about benefits and risks associated with any treatments Tell you if something about my health changes
Provide you with information to help you make informed decisions about your care and treatment options Tell you if I have trouble reading
Work with you, and other partners who treat you, in the coordination of your care Let you know if I have family, friends or an advocate to help me with my healthcare

Compare and contrast: what’s the difference between this and what we’re talking about in participatory medicine?

There’s more to PM than patient safety (avoiding errors), although we expect safety will be one outcome of patient engagement. (The Journal of Participatory Medicine seeks evidence.)

My list of differences so far:

  • Participatory Medicine says patients are partners in their care, not just recipients. (The Compact could be fulfilled in a one-directional care relationship. Some patients want one-way, which is fine; that’s just not participatory.)
  • Participatory Medicine adds patient communities – data oriented communities (e.g. Patients Like Me) and others.
  • Participatory Medicine adds patients seeking and sharing knowledge via social networks and blogs.
  • Participatory Medicine adds patient-driven research.
  • Because of all that, Participatory Medicine adds patients bringing information into the healthcare economy.
  • Participatory medicine requires that patients and caregivers actively participate in their care. Nowhere does the Compact say patients will actuall do anything: they discuss and choose, but then, it seems, they receive the care.

The people I know in patient safety don’t at all consider patients passive, but active participation is one of Participatory Medicine’s fundamental contributions. From the definition on the society’s site:

Participatory Medicine is a cooperative model of health care that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.)

I’d like to see this compact posted on every door in every medical office. (Download a copy here here [2014], and read more about it on their site [2014].  Well done, NPSF.


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