Don't forget the patient in patient engagement

Every patient is different. 

And, so it seems, is every definition of patient engagement.

No real revelation there. But it does expose a foundational imperative — where does patient engagement start?

The easy answer, of course, is with the patient. But reality shows us that it often starts with caregivers and health care administrators who channel the needs and desires of "patients" when they design "patient-centered" programs, services and facilities. After all, we are all patients, too!

There is a great deal of innovative thinking being done in the name of patient engagement. We saw a ton of it in the just completed judging for the inaugural John Q. Sherman Award for Excellence in Patient Engagement [the award winners will be announced May 15 at NPSF Patient Safety Congress in Orlando].

This creative thinking is breaking down traditional health care walls by taking care out in to the community, involving new people in caregiver support roles, inventing new ways to push information to patients and creating new social structures that empower dialogue.

The judges were impressed. 

But with every shining example of excellence in patient engagement, one fundamental question lingered — when, exactly, did they involve the patient in this discussion?

Patient engagement is about our patients, but it also needs to be by our patients (and their families!). The strategies that will indeed be sticky — the ones that will be sustainable and cause real change in both personal and population health — will be the ones that start and end with patients. To paraphrase Abraham Lincoln, they must be "of the patients, by the patients and for the patients."

So as you strategize how to improve patient engagement, make sure that discussion begins with the most critical people — your patients. And don't forget families, too!

This post originally appeared on, a blog dedicated to advancing patient and family-centered care. I am a member of the Engaging Patients Advisory Board and write for the blog.