Editor’s Note: This post was originally published on February 5, 2015. Be sure to check out the collection of articles in the March issue and our new blog content for more on the patient voice in medicine.
By: Pat Mastors and Diane Stollenwerk
Pat Mastors is president and co-founder of the Patient Voice Institute, and Diane Stollenwerk is co-founder of the Patient Voice Institute.
“Patient engagement” is a phrase so overused in quality improvement efforts that it risks being rendered meaningless. But it is a very real concept when you’re sitting by the hospital bedside of someone you love, as they battle a life-threatening illness. I experienced this with my father years ago, when he suffered a neck injury in a fall. Last year it was my 26-year-old daughter, struck with a rare and paralyzing nerve disorder.
My father ultimately died in that hospital bed of complications from an infection. My daughter, however, made such a remarkable recovery that a local television station called it a “miracle.” Perhaps it was merely the luck of the draw. But for me, it was validation: a rare opportunity to put to use all I’d learned in the years since my father’s death about the things an engaged patient and family can do to make a difference. Though an outcome can never be certain, I got what every parent would want: the knowledge that I was doing everything humanly possible, in partnership with the medical team, to improve the odds.
For a data-driven field like medicine, my “N of one” story has no statistical value. But here’s the question: what ultimately happened to my family’s anecdotal but hard-won insights about what worked and what didn’t? Was it recorded somewhere for the benefit of others? Sadly, no. As is the case with a vast number of families, our experiences of medical care remain untapped. It’s unfortunate not just for patients, but also for the advancement of science.
That’s one reason we formed the Patient Voice Institute (PVI)—to capture and share this collective wisdom, through a transparent online platform. Another is to train and mentor patients so they can go forth more confidently, consistently, and effectively as improvement partners with their medical teams.
In light of this mission, I am impressed with the University of Montreal Hospital Research Centre’s body of work described in a recent Academic Medicine article entitled: “The Patient-as-Partner (PP) Approach in Health Care.”
First, the designers of the PP model embrace the fact (which some in medicine struggle to accept) that patients are worthy co-creators of good outcomes. Indeed, who knows a patient’s body, experiences, and motivations better than that patient? To facilitate the communicating of patient preferences and insights with the care team efficiently and well, the PVI website feeds into a free “Patient Passport,” a downloadable tool created in 2014 by the National Quality Forum’s Patient/Family Engagement Action Team. Well-aligned with the PP philosophy, this is one means of tapping “patient wisdom” on a systematic level to maximize teamwork, good outcomes, and greater patient satisfaction.
Second, the PP approach involves using patients to actually train physicians. They’ve recruited over 160 “expert-patients” who will be mobilized as a “fruitful addition to the medical school curriculum” and who are developing “a taxonomy of patient competencies.” This too aligns with a founding mission of PVI, which is to train and deploy a self-selecting corps of committed and articulate patients around the Patient Voice Principles of Safety, Dignified Human Interactions, and Access to Information.
Integrating the patient voice authentically and robustly into the design of care offers the real promise of improving our health care system. The PP approach stands with a handful of others to be lauded for fostering this change. The authors rightly see much work ahead, including figuring out what to do in those situations in which patients don’t want a partnership role in their care. They also recognize that a huge culture and power shift will impact the economics and corporate presence in health care in ways yet to be known.
But the shift is underway. As the authors point out, “patients…have health care expertise. It’s high time we made use of it.”
We wish them well.