Why is patient and family engagement so important and so challenging to get right?
Cue the 60-second rapid-fire video montage of people laughing, crying, screaming, giving birth, tearing their hair out, sitting dejected in a hospital gown, being ignored, getting bad news, getting great news, feeling lost...
Yeah, the patient experience is a supremely personal, complex, nuanced one. No wonder medical dramas are so darn popular. And yet, let's face it, most of those dramas focus on health care staff.
It's a hard habit to break.
But break it we must. Years ago, when I first started working to shift the way of thinking about patient care, we looked to the UK's "nothing about me without me" model. It seemed like a ridiculously simple concept: involve people in their own care. Ask them what they want and need when changes are in the works.
Certainly we've come leaps and bounds over the years, however, patient engagement remains a tricky business.
Health care is the "cold spaghetti" of industries--tangled, complex, hard to pry apart. And that's just in reference to the processes and systems. We haven't even added people to the mix--the egos, the "secret language," the hierarchy and of course, the vulnerability.
I've been on both sides of these coins--as a person who works in health (though not a clinician) and as a patient and patient advisor. What have I learned over the years about what patients and caregivers want and how they want to be involved? Simple. They want their involvement to be CLEAR. They want to be part of something where...
Curiosity is part of the approach to problem-solving
Lived experiences are honored and recognized for the value they add and perspective they provide
Expectations about what the engagement is hoping to achieve are well-defined
Action items are identified and reported back to the group on
Respect is at the core, including honouring everyone's time, passion and voice
As a patient advisor, this is what I'm always hoping for at every meeting I attend, and as the leader of engagement sessions for patients, caregivers and families, this is what Big Eye Innovation aims for at every turn. It seems simple, but honestly speaking, it takes a lot of work behind the scenes to accomplish.
If you need a team that "gets" both sides of the health care engagement coin, please reach out for an no-obligation chat!