Lessons on Patient Activation

(Originally published by Hospital Impact)

Patient activation measurement is the solution to engaging patients in their own healthcare. Measure the patient’s activation; identify and implement strategies to improve the patient’s activation; and when activation scores increase that is success and we have an activated patient ready to engage in their own healthcare. This is patient-centered care and this is how to go about improving healthcare outcomes.

Yes, the speaker at this conference had that much clarity and apparent belief that patient activation measures were this important, and yes, the silver bullet to improving healthcare outcomes.

If only he had heard another speaker, this one at last year’s NEHI (Network for Excellence in Health Innovation) conference in Boston, discussing a similar subject. This speaker shared a story (paraphrased below) …

There was an amazing physician who truly believed in patient engagement and activation. He was known for ensuring his patients were involved in their own care decisions, they felt heard, received the “why” to treatment recommendations and were partners in their care. He was brilliant and engaging and truly ‘got it.’

Recently, and after many years in practice, this same physician became seriously ill. And of course he expected the same treatment from his physicians as he provided to his own patients.

Well, one would think.

Actually that was not the case. When this physician became seriously ill he did not want to be involved in shared decision-making. He did not want to improve his patient activation (and Lord knows not his activation score). He did not want to be engaged as we in the system would define patient engagement. What he wanted at that time was “God-doctor” to tell him what he needed to do.

I can only imagine this surprised those who knew this physician as both a patient and a clinician. For someone to not only advocate for but also to live every day providing patient-centered care that positions patients to engage in their own care, this just doesn’t make sense … or does it?

Perhaps this physician, even through his own illness journey, continues to teach us all what patient-centered care truly is. In fact, I believe that he is.

Lessons he teaches are:

  • A patient’s activation and engagement will vary over time (and perhaps from visit to visit) based on many factors. One example is the physician becoming seriously ill himself. Another example is a patient who may be 100 percent activated and engaged in their own care at their most recent appointment who has learned just after this visit that their parent is now seriously ill and requiring significant support. The next time you see this patient, the level of activation and engagement may significantly decrease due to such factors as stress, worry, exhaustion, etc. Continuing to assume that the patient is activated at the previous level (based on the most recent visit and data points) will be detrimental to the patient’s health and healthcare outcomes.
  • To truly provide patient-centered care, providers must understand the patient’s whole (and ever-evolving) story. What was true last week may have changed significantly and thus no longer holds true, as well as the patient’s level of activation and engagement.
  • Patient-centered care includes determining what your specific patient needs at that specific time and not assuming, not strictly relying on tools and not focusing exclusively on data points previously inserted into an electronic health record. Patient-centered care requires truly and authentically connecting with the patient at each and every healthcare encounter.
  • Patient-centered care recognizes that each patient is different and so is each patient’s optimal level of activation and engagement. What is true for “most” patients may not be true for the patient sitting in front of you, and it is our responsibility to determine their truth (and also recognizing their truth will change).
  • As healthcare leaders, our responsibility is to develop care models that allow for true patient-centered care, clear understanding of the patients whole and ever-changing story, modify care and engagement approaches informed by these data, and of course position all caregivers to provide this patient-centered care with compassion.

Much gratitude to the physician referenced above for continuing to teach us all as he faced his own healthcare challenges. And lastly, let’s not get so focused on tools and measurements that we lose sight of patients. Let’s harness the power of tools and measurement to enhance patient-centered care provision, not replace it.




  1. Well said, Tom. I suppose that we all have a horse in this race, sooner or later.

    One thought: when we studied health literacy, the patient partners at CHA suggested calling the concept ‘health capacity,’ and making it part of an ongoing assessment (i.e., conversation). They said that we should be looking at each person and asking, ‘what is your capacity to do the work of your health today?’ What resources do you have right now, to listen, ask questions, absorb, retain and then act? What burdens do you have, responsibilities, needs, issues, that would take away from your capacity to do the work of your health?

    It takes work for a provider or staff member to be present during the appointment. The same is true for patients. And if only we flipped that equation more often, supported staff better, we could all be more comfortable when we find ourselves in the other person’s shoes.

    • Love this comment and concept. And especially because the concept was created by patient partners. Really wonderful. I look forward to getting the word out about this approach you all created. Really tremendous. Thank you!

  2. Interesting take on patient activation. Never heard of that interpretation. As you can tell I’m catching up on my reading! Dad

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