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 the 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!
I appreciate your main argument that as patient-centered approaches are being innovated, patients themselves are often missing in the process. Given, as you say, the uniqueness of each patient, we have to consider the ways in which meaningful strategies for patient engagement cater to the specific context and needs of the patient or the patient sub-population. This tailored approach seems to be a critical area for collaborating with patient partners within that sub-population. We also need to balance that specificity with the ability to bring patient-centered programs, tools, and strategies to scale, to make them sustainable and translatable to a variety of contexts and patient groups. I suppose there is a delicate balance between the micro-level attention to patient-specific and patient sub-population specific needs and preferences, while also keeping in focus how to be patient-centered at the population level more broadly.