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In any movement there’s a stage of maturation, where aspirations get fleshed out with specifics. That time is arriving for participatory medicine.

As patient engagement (aka consumer engagement)  earns attention, the question increasingly arises: “Where do we start? What can we do?” More specifically, “What do we mean when we say ‘patient engagement’?”

CFAH Engagement Behavior Framework

For me, the first big conceptual breakthrough was in May, when Jessie Gruman’s Center for Advancing Health published its Engagement Behavior Framework, as we reported here. (See PDFs at bottom of that post.) Her team methodically identified 43 behaviors – 43 ways every patient or their proxy will sooner or later engage with the system. They grouped them into ten categories:

  1. Find Safe, Decent Care
  2. Communicate with Health Care Professionals
  3. Organize Health Care
  4. Pay for Health Care
  5. Make Good Treatment Decisions
  6. Participate in Treatment
  7. Promote Health
  8. Get Preventive Health Care
  9. Plan for the End of Life
  10. Seek Health Knowledge

What a great list of “how I’ll know one when I see one!” Tangible, concrete, specific. The full list of 43 could even be a syllabus.

But skeptics point out that some patients – some say most patients – don’t want to do anything. I can’t count the times I’ve heard docs say patients are lazy or irresponsible – most recently in the new HealthLeaders magazine: “In our annual Industry Survey, leaders cite patient noncompliance and lack of responsibility as the fifth-greatest driver of costs.” (We all know couch potatoes, but ugh, what a useless thing for executives to say. They act disempowered.)

And yet, there are also e-patients: empowered, engaged, educated, enabled – doing what the CFAH describes. How can we move people from spud to spunky?

Patient Activation Measure (PAM)
 This summer I learned about the Patient Activation Measure (PAM). (I heard of it years ago, but didn’t learn about it.) The PAM is a commercially licensed tool created by Judy Hibbard’s team at the University of Oregon for methodically assessing how activated a patient is – and, importantly, what to do with that information, to improve outcomes.

Addendum 12/26/11: In an email this summer I asked Dr. Hibbard what she’d say if asked to sum up the whole thing. Her reply:

Being patient centered means meeting patients where they are.  The PAM helps providers understand where a patient is starting from. For providers, the PAM is like another “vital sign” telling them essential information they need to effectively work with the patient.

Thirteen questions are asked, and patients are scored as level 1, 2, 3 or 4:

  1. Does not yet believe they have active/important role
  2. Lack confidence and knowledge to take action
  3. Beginning to take action
  4. Maintaining behavior over time

This 45 slide presentation tells more.

In particular:

  • Slide 6: What does it mean to be activated?
  • Slide 8: The 13 questions
  • Slide 12: Activation level predicts behaviors
  • Slide 14: Example: differences in health behaviors among diabetes patients at each level
  • Slide 24: Activation can predict utilization (level of spending) and outcomes two years out
  • Slide 26: Increases in activation are possible. (Note – this is different from “compliance”!)
  • Slides 31-33: Differentially tailoring how patients are coached, based on activation level

The last slide sums up the apparently practical nature of this approach:

  • Start where the patient is
  • Encourage realistic steps – creating opportunities to experience success.
  • Build on strengths
  • Attention to emotions
  • Use measurement to assess and to track progress

Time for Action

It’s time to get to work on connecting the dots between these frameworks and outcomes. We need to develop and disseminate best practices for participatory medicine. You can’t do it without an engaged participatory doc, and you can’t do it without an engaged, participating patient.


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