Nina S. Vincoff, MD, co-chair of the ACR’s Commission on Patient- and Family-Centered Care (PFCC) Committee on Patient Engagement, noticed that her institution, Northwell Health, lacked a patient experience physician leadership position. Responsibility for patient experience was spread out across the department and there was no one in radiology focused solely on patient-centered care. 

“Patient experience was being addressed by leaders in Quality and Safety, Operations, Informatics, Education and Research,” says Vincoff, who currently serves as medical director and vice president for clinical initiatives and patient experience at the Katz Institute for Women’s Health at Northwell Health. “I felt that Northwell deserved to have a leader who was specifically focused on the patient experience.” 

This led Vincoff to create a radiology vice chair of patient experience role at Northwell — a position that would work with patients to make sure their voices were heard. She went on to hold this position as the first vice chair for patient experience from 2019 to 2022. 

This patient experience vice chair works with a patient and family advisory council comprised of 10 to 12 patient volunteers who meet with the vice chair and other department leaders regularly to discuss issues the council sees and how to improve or fix them. When she created the vice chair position, Vincoff says, she identified the need to not just be reactive to patient needs by waiting for them to bring forth an issue to tackle, but to be proactive and collaborate with the patient and family advisory council on projects Northwell Health was working on. 

Setting a Trend

Other institutions have started to follow suit. Nadja Kadom, MD, Emory Radiology’s interim medical director of quality for Emory Healthcare and an associate professor of radiology and imaging sciences and director of radiology quality and radiology research at Children’s Healthcare of Atlanta, spoke to Vincoff about creating a patient experience chair role with her own medical institution. 

“I’ve worked with patients in the past on some of my projects, and it made me realize how many of my assumptions about what patients were thinking of were wrong, and how much I can learn when I actually hear from patients,” Kadom says. “As physicians, we’re educated to be empathetic and make decisions on the patient’s behalf in the patient’s best interests. And we do that well. But empathy only goes so far. I think we need to acknowledge at some point that we are not the patient, so we just don’t have that full perspective.”

Kadom cited an example of how patient opinion can help influence the construction of new office buildings to make patients feel more comfortable. “Our patient and family advisors at Children’s Healthcare of Atlanta were discussing a construction project in the new mental health building,” she says. “They reviewed the architectural plans and said it would be nice if the patient could exit through a different door and not to the waiting area. Sometimes, when you talk to a mental health professional, you’re distraught afterward, and you may be crying or angry. It might be nice to have a private door where you can exit the facility so you don’t walk through the waiting room and get the other patients anxious.”

I think we need to acknowledge at some point that we are not the patient, so we just don't have that full perspective.

While being proactive in improving the patient experience is important, reacting to issues brought up by patients is also essential. Julie Moretz, assistant vice president and chief experience officer at Augusta University Health, began to get involved in PFCC when her baby was diagnosed with congenital heart disease, consisting of three major heart defects, and was sent to Augusta University Health. There were points during treatment and hospitalizations when she was unable to be with him bedside because of  visiting hours or during physician rounds and nurses’ shift changes. She wanted to know why, which led her to start asking the staff questions. 

“Nobody really had a good answer other than, ‘Oh, we just have always done it that way.’ I continued asking questions and got the right people here at our hospital to listen and to understand the importance of family participating in care,” Moretz says. “We were able to change practices and policies so that families could be involved in their patients’ care, not only in pediatrics, but also in adult healthcare.” 

After Moretz spoke with various Augusta University Health team members, the chief operating officer at the time invited her to serve on quality committees to include the patient voice, which began her involvement in patient- and family-centered care and the patient experience. 

Remembering to Listen

While planning for the future with patients is important, Moretz says, patient experience chairs need to make sure to listen to patients. She recounts the story of Dana Caviness, a healthcare colleague who was diagnosed with cancer at age 42 (read more about Caviness’ firsthand account here). 

When Caviness began radiation treatment, she met a young nurse named Katie, who led her to the radiation room. She went through 28 rounds of radiation treatment, and 21 of those times she needed to be face down. All she could see were the shoes of those working on her. And while she recognized Katie’s shoes, eventually more pairs of shoes joined. There was no introduction as to who these people were and no reason given for why they joined the treatment. The lack of communication bothered Caviness. 

“That is PFCC 101,” Moretz says. “Who are you? What’s your name? What’s your purpose? How are you going to help me? The only thing that doesn't change from birth until death, unless you get married, is your name. And that is the most personal aspect of communicating with someone.”

Moretz believes stories like these make a difference. Something as simple as encouraging introductions between physicians and patients goes a long way. 

She encourages patients who want to be involved to reach out to patient and family advisory councils at medical facilities in their area for more information on getting involved. Vincoff echoes the same message for radiologists. 

“Culture comes from the top,” Vincoff says. “If patient experience is important to the physicians, that message translates all the way down through the entire department. Having a physician at the highest level of leadership in our department as a patient experience vice chair sends the message that in our organization, PFCC is a priority.”