During a nursing career spanning 40 years, Jackie Gonzalez, D.N.P., APRN, M.B.A., has come to understand the importance of empathy in engaging patients and families. It was, however, her personal experiences that fueled her determination to ensure patients and families are partners in their own care and are critically important in influencing health care’s bigger picture. Dr. Gonzalez has raised a daughter with cerebral palsy and fought pancreatic cancer — a fight that began at Sylvester Comprehensive Cancer Center in 2019 and included a 100-day hospital stay.

Now cancer-free, Dr. Gonzalez volunteers with UHealth’s Patient- and Family-Centered Care (PFCC) program. Her work helps ensure that all University of Miami Health System patients and families are treated with dignity and respect, and that they understand, collaborate with and participate in all aspects of their care. “UHealth has welcomed the active voice of its patients and families, creating engagement, decreasing re-work, and enhancing the environment for both patients and staff,” she said.

For the past six years, UHealth has been building a division focused on incorporating patients’ and families’ input into operational areas. Today’s PFCC program (part of the Office of Patient Experience) has nearly 3,700 patients and families influencing patient communications, how technology is used, ethics, patient safety, research and even the design of new clinical care centers. Goals for the future include working with the Miller School to incorporate patient- and family-centered care into the academic curriculum.

Catherine Hanson, director of patient engagement, was recruited to build the health-system-wide program. She explained that the concept has been around for 30 years, is well studied and is relied on by major health systems around the U.S. and internationally to influence care. “If you look at Google Scholar, you’ll see there are more than 3 million publications about patient- and family-centered care, and the reason there are so many is because it works,” Hanson said.

That makes sense to Bri Neuburger Simon, vice president of operations at UHealth. When she thinks about care models, rolling out new clinical sites and clinical programming, she said, “Who better to advise us on taking care of patients than our patients themselves?”

Andrea M. Cook, M.S., B.S.N., RN, manages health literacy for the PFCC program and the communications and technology committee. This includes revising existing patient-facing materials so that they are within a fifth-to-eighth-grade reading level.

“Health literacy is becoming a focus of national and governmental organizations, which have recognized that if we’re going to achieve health equity, we need to address health literacy,” she said.

Cook, who was recruited to the new position of health literacy manager last year, will hold health literacy training sessions in the future, but for now, she is editing various departments’ marketing and educational materials; when appropriate, she is asking for recommendations from the communications and technology PFAC or from UHealth e-advisors.

E-advisors — a pool of about 3,700 patients and family members who have volunteered to share their opinions — collectively shape all kinds of goings on at the health system.

Deja Kearney, program analyst in PFCC, oversees the patient and family advisory councils and responds to questions from throughout the health system regarding the program. For example, staff from the Bascom Palmer Eye Institute, which has worked with e-advisors for the past three years, recently asked them if patients were aware of the eye center’s virtual eye care clinic. The response led to changes in the language the center used in its advertisements for virtual eye care, improving patients’ understanding of the program.

“What’s special about the e-advisor program is that it asks specific questions about how we are engaging with our patients and what they feel is the right path for us,” Kearney said. “We learn from them as much as they learn from us.”