When a social worker in 2014 tapped Glenn Kopelson to serve on the new Patient and Family Advisory Council (PFAC) at the Stewart and Lynda Resnick Neuropsychiatric Hospital at UCLA (RNPH), Kopelson figured he had knowledge aplenty that could help others.
By then, he had spent years sorting through UCLA Health’s options for inpatient and outpatient care for his son, who since early childhood had dealt with an alphabet soup of diagnoses (OCD, ADHD, Tourette syndrome), and his daughter, who had anxiety and depression.
Kopelson became a founding member of that PFAC and has remained an engaged participant. He particularly credits the council’s storytelling program, started in 2017, with helping nurses, medical students, occupational therapists and other medical staff understand how to help patients. He and other PFAC members regularly tell their families’ stories, he said, to help clinicians care for other families dealing with the trauma of mental illness.
“Family members are a critical piece of the care team,” he said. “Resnick is a last stop when you’ve exhausted everything else. When someone gets admitted, typically through the emergency department, things are really bad for the patient and loved ones. That’s when the situation is most dire for family members. The storytelling program was designed to educate caregivers about the experience and to give tips on how to be more effective.”
With patient-centered care a watchword of hospitals across the nation, administrators view PFACs as an important way to improve the health of patients.
“Our PFAC is an important component of our care team,” said Steve Cohen, senior clinical director of RNPH. “It provides a voice to our patients and their families and loved ones. It’s an opportunity to empower them to play an active role in shaping how we provide care.”
The RNPH/Psychiatry PFAC, of which Cohen is a member, is one of nine at UCLA Health. Other councils include those for pediatrics, neurosurgery, technology and Spanish speakers.
UCLA Health has found that these collaborations of patients, families, staff and clinicians are effective when it comes to evaluating strategies and improving outcomes.
The nation’s first PFAC was created in 1982 at Boston Children’s Hospital after parents lobbied for longer visiting hours with, and more psychosocial support for, their hospitalized children, according to a recent report by Barbara Lewis, a UCLA Anderson School of Management MBA and founder of Joan’s Family Bill of Rights, a for-profit consultancy in Los Angeles that works with health care providers to improve the patient experience.
PFACs continued to emerge in the 1990s and 2000s. In 2009, Massachusetts passed a law requiring all hospitals to maintain a PFAC and to report annually on the council’s activities. It remains the only state that mandates the creation of PFACs. Councils are encouraged by the federal Centers for Medicare and Medicaid Services as well as the Joint Commission, the nation’s leading accrediting body for hospitals, said Linda Diaz, project manager with UCLA Health’s Office of the Patient Experience.
According to the American Hospital Association, PFACs are an excellent way to help health care institutions and providers better understand the perspective of patients and families while also helping caregivers better identify patients’ needs.
Since 2018, Lewis’ report said, the AHA’s annual survey of more than 6,200 U.S. hospitals has included a question about PFACs: Does your hospital have an established PFAC that meets regularly to actively engage the perspectives of patients and families? The most recent survey of 2021 data, released in December 2022, indicates that the percentage of hospitals with PFACs is 51.36%, down from the pre-pandemic peak in 2019 of 55.10%. (During the pandemic, many hospitals suspended their PFACs; others used the advisory councils to help craft messages about COVID.)
“Health systems that have fully embraced PFACs, like UCLA and Kaiser Permanente, see that the councils work to improve patient-centered care,” Lewis said in an interview. “Patients are providing feedback. When you look at every other industry, whether you’re flying or buying a car or purchasing on Amazon, they want to hear from you about your experience. Health care has been behind other industries on this. But there has been a movement in the past 10 years: nothing about patients without patients.”
Focus on patient satisfaction, safety
The Resnick Neuropsychiatric Hospital PFAC consists of two dozen participants, of whom eight are patient and family advisers. The others are UCLA clinicians or administrators, including psychiatrists, psychologists, nurses, recreational and occupational therapists and social workers. The group typically meets once a month; before the COVID-19 pandemic, they met in person for about two hours monthly. Since then, they have shifted to meeting for an hour each month via Zoom. In-person meetings are likely to resume soon.
“We talk about initiatives that we have going on and how we can improve the patient-family experience,” Kopelson said. The key topics are patient satisfaction, patient safety and how to navigate the UCLA Health system.
Innovation is a big part of the mission for the Resnick Neuropsychiatric Hospital PFAC, Kopelson said. In addition to creating the storytelling program, the council developed a mobile device app, UCLA Psych, that serves as a guide to the UCLA Health system. It details the admissions process and visiting hours, explains how to secure medical records and lists the clothing and other items that inpatients may bring to the hospital (toiletries in unbreakable bottles only, for example).
The RNPH/Psychiatry PFAC participants are also proud of their most recent project — creating orientation videos that focus on the adult inpatient psychiatry units, the child and adolescent inpatient psychiatry unit, the partial hospitalization and intensive outpatient programs, and electroconvulsive therapy. The videos were designed, edited and coordinated by the RNPH/Psychiatry PFAC and are available in English and Spanish.
NAMI partnership
In February, the PFAC partnered with NAMI Westside LA, an affiliate of the National Alliance on Mental Illness, the nation’s largest grassroots mental health organization, to create a peer support group for RNPH patients. As part of that initiative, NAMI Westside LA trains peers so that they can effectively lead peer support groups.
“These groups are a way for patients to receive peer support during their recovery by sharing their stories and learning from others facing similar challenges, rather than mental health professionals,” said Elizabeth Stephens, program director at NAMI Westside LA. “Our goal is to make this program as sustainable as possible by recruiting past Resnick patients who are interested in being peer support group leaders.”
The hope, she added, is that patients who are introduced to NAMI Westside LA through the peer support program would then be more likely to continue to seek support from the organization after discharge.
For Cohen, the RNPH senior clinical director, patients and family members who participate in the PFAC help to keep the medical professionals and administrators aligned with the needs of the patients and their families. This collaboration and partnership are incredibly valuable to RNPH’s mission of providing the highest-quality and most innovative world-class care.
Martha Groves is the author of this article.
