As a CF/lung transplant patient turned Patient/Family Advisor (PFA), I have been on the frontlines of the evolution of Patient Experience strategies since 2005. I fell in love with PFACs and have been thrilled to see the ways in which we partner with patients and families grow more sophisticated over time. Today, we have patients and families working directly in clinical quality improvement, sitting at the board level and rounding on patients actively receiving care. It’s both inspiring to see the changes and frustrating to see how far we have to go to achieve genuine partnerships across the continuum of care.
After working as a patient advocate, I became a specialist in Patient and Family Engagement (PFE) “best practices.” Working with healthcare organizations to improve bedside engagement and community engagement proved challenging for multiple reasons. I hunkered down on the best practices, sought out additional strategies and remained steadfast in the belief that the right strategy would improve engagement and, ultimately, experience.
One day, I was on an oncology unit trying to determine how well the clinicians communicated with their patients. I was rounding from room to room, asking patients questions. To me, the questions were both simple and very important to my understanding of the patient experience:
- “When your doctor came in this morning, did you understand everything he told you?”
- "After morning rounds, were you left with any questions that didn’t get answered?”
- “When you call for a nurse, how quickly do they typically come to your room?”
These were simple questions directed at what we care about in improving experience: clear/respectful communication and a timely response to needs. I thought I was doing a great job with my questions but the answers I kept getting were not what I expected, wanted or needed. Instead of telling me about the communication and timeliness of responding to call bells, patients were telling me about the pain in their side that was worrisome. Spouses told me long stories about getting the patient to the ED before being admitted. Universally, my questions were not being answered at all, no matter how many times I asked them or how I was able to rephrase. I wasn’t getting what I came for, but I was seeing what I had become.
In healthcare, there is a need to focus on improvement and standardization. I began to wonder, “Is it possible that I have ‘systematized’ my work in Experience to such a degree that it has become a series of strategies rather than an exploration of the ACTUAL experience?” The answer, for me, was ‘yes.’ My next question; “Am I working on strategies without a clear understanding of what matters most to those living the actual experience?” Again, the answer, for me, was ‘yes.’ I had become so deeply invested in “moving the needle” around improving the patient experience that I was no longer looking at the experience at all. Or, at the very least, I was only allowing myself to see a small sliver of it. It was an embarrassing and deeply important realization. This was a reminder that patients are living the experience of illness and injury—not the operationalizing of PFE best practices—and this internal focus is immediate and unrelenting. For me, this was the beginning of a new way of seeing “the experience of Experience.”
Today, I use Human-Centered Design and Experience Based Co-Design strategies to ensure I am able to uncover the “lived experience” of those providing and receiving medical care. In doing so, I am humbled to have the chance to witness the pain points caused by systems, cultures and perceptions. I am able to quiet my own agenda so those living in the ACTUAL experience have the opportunity to reveal what matters most. I have learned that change happens when an experience can be seen with the 360 degree view: patient, family, professional AND objective observer. Working in this way means I am no longer trying to “push the river,” but, rather, riding its natural flow long enough to gain true insights, understand the priorities and identify the Experience Aim.
“Ethnographic research” or, what we often call “shadowing,” is not revolutionary in itself. What was revolutionary for me was what shadowing taught me about how much I had lost sight of caring about and capturing actual experiences. As this work evolves, so too does our toolbox of ways to improve. What I know now is that, in the face of so many exciting tactics, we must not allow ourselves to forget about the value of eyes and ears on the frontlines of care. The only way to true partnership (and sustainable improvement) is through a relentless pursuit of the truth using a variety of strategies.
Experience is not only an outcome.
Experience is a practice of returning over and over again to the source (patient, families, clinicians and staff) in order to understand how healthcare is being received and delivered.
Only then can we design meaningful improvements.
Vice President, Experience Innovation
The Beryl Institute