Why It Matters
When we engage patients and family members, they really become our partners in the care design process. For six years, I served as the Chief Operating Officer at Dana-Farber Cancer Institute and, during that time, I had the opportunity to learn so much for our patients and family members.
But one day, I finally realized something: Patients were not my partners – they were my teachers.
Before we get to that new label, it’s important to start with the foundation of patients as partners, as collaborators. I’ll let Martie Carnie, one of the founding members of the Patient and Family Advisory Council at Dana Farber, explain it in her words …
Changing a culture to have patients be primary was not an easy task. We all had to learn to listen to each other and trust each other, so that we could make services better for patients and families. It took a long time, but I came to appreciate that the staff and leadership were teaching us about the complexity of delivering quality care. When we explained our experiences and reasons, they listened. They shared their position on the restrictions, codes, and regulations they needed to abide by, and we listened.
Together, we built a patient-, family-, and staff-centric, award-winning cancer center.
So how do we move from that partnership to a relationship where patients are teachers? What does that even mean?
For the last 20 years, we have tried to elevate the patient as a partner so that we now see them as peers in improving care. But For the last 20 years, we have tried to elevate the patient as a partner so that we now see them as peers in improving care. But For the last 20 years, we have tried to elevate the patient as a partner so that we now see them as peers in improving care. But when you view patients as teachers, you actually no longer see them as peers co-designing care; you see them, instead, as authority figures.
Teachers impact wisdom. We view them with respect because we recognize they have far greater knowledge than we have. We are more careful to listen to them and weigh heavily what they say. We see as ourselves as sponges around them trying to soak up great ideas and become enlightened.
What have I learned from the patients I worked with? Scott Viera taught me the importance of fixing the wait time when he said, “I have a full-time job and I have little children. I am too busy to have cancer. Fix the wait time for infusions so I can get my chemo and go home to my family.” Marlene Nusbaum taught me how to design an exam room when she viewed the mock-up and said, “Is this going to be the real flooring? It’s going to be solid? You know patients can get dizzy when they sit up from an exam and you would reduce falls if you put a stripe in the floor to visually orient them?” (Even our expert patient safety consultant hadn’t thought of that one!) And Martie Carnie taught me not to distract the physicians when they write orders by noting, “You’re not really going to have artwork behind the chairs in the exam room, are you? After all that is the physicians’ line of sight from the computer and we shouldn’t have them visually distracted when they are writing chemo orders.”
What happens when your paradigm shifts from the patient as partner to the patient as teacher? Plain and simple, you learn more.
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