At the end of February, I had the privilege of attending the 2017 Patient & Family Centered Care Conference, presented by PFCCpartners. Immediately, I was struck by the growth in attendance and the depth of the presentations highlighting best practices and innovations in patient engagement. I first attended this conference as the sole representative from HealthInsight in 2012, wanting to start the journey of Patient and Family Advisory Councils for HealthInsight Utah. This year, HealthInsight was represented by eight staff and six patient and family advisors from Nevada, Oregon and Utah-it is safe to say that patient engagement is here to stay.
Wendy Nickel, MPH, from the American College of Physician's Center for Quality and Patient Partnership in Healthcare, kicked off the conference by providing an overview of four key principles of patient engagement:
While many of these principles seem simple, they are not consistently applied in the delivery of health care. One of our advisors, with a background in education, compared the patient engagement movement to what education experienced with parent involvement and Title 1 funding in the mid-1990s. Title 1 guidelines state that parent involvement in their children's education and at school is critical for success. The barriers to parent engagement are similar to those of engaging patients, including: lack of professional time, lack of understanding communication styles of parents/patients, professional misperceptions of parents'/patients' abilities, limited family resources, and lack of comfort with the school or health care systems. Education and tools are needed for both professionals and families.
There is a lot to be done, and the conference attendees agreed that one of the most transformational aspects of engagement is being heard, rather than being dismissed, by professionals. Patients should no longer be considered "not compliant" or expected to adhere to physician's orders. Nickel reminded us "patients aren't in prison" so we should not treat them like they are.
PFCCpartners recently announced the release of the National Academy of Medicine's framework for patient and family engaged care. There are also several resources available for beginning the patient engagement journey on the Partnership for Patients website. I look forward to the day when the movement is no longer needed-when the voice and goals of the patient are prioritized above everything else.