The Patient and Family Advisory Council has influenced countless improvements at Karmanos since 1998
The Patient and Family Advisory Council (PFAC) is in its 25th year of making a difference for Karmanos Cancer Institute patients. The council at Karmanos was the second National Cancer Institute-Designated Comprehensive Cancer Center group to form, just after Dana Farber Cancer Institute. This hospital-based advocacy group represents the specific needs of cancer patients and their families, providing leadership with feedback to serve patients better.
How it Started
In 1998, Karen Goldman, then vice president of Cancer Patient Care Services and chief nursing officer at Karmanos, saw the value in hearing from patients and families to strengthen the care that Karmanos provides. She tasked two employees to form PFAC: Valerie Fred, operations support specialist (currently the ambulatory business operations analyst), and Marcia Mattiello, the lead social worker at the time.
"When Marcia and I were approached to look into forming PFAC, I realized at that time the importance of having the patients' and caregivers’ voices help us drive decisions for our operations and care,” said Fred. “We learned that Dana Farber had formed a similar group to help them address some areas of concern. You could have the most dedicated nurses and leaders sitting around a table coming up with standards, educators creating a patient brochure, or an architect or designer working on new treatment center builds, but without the end user’s input, all the professional knowledge could be off the mark.”
After coming up with expectations, goals, purpose, objectives, and vision of the member makeup, physicians and practitioners began nominating potential members who they felt had valuable ideas to help create the best cancer center in Michigan. A diverse membership was necessary, including a mix of genders, ages, races, diagnoses, length of survivorship, and experience with different cancer treatments.
The first meeting with the initial group of 15 patients and caregivers occurred that December. The group hit the ground running, addressing operational issues and circling back at their next meeting with presentations on the changes that would be meaningful to patients.
“The council is a sincere and candid group. Karmanos management takes their feedback seriously and works at implementing their ideas,” Fred added.
“They ask us about issues around patient care, and we're able to give feedback and input and hopefully make things better for everybody,” added Howard Katz, PFAC co-chair. “That's the goal. They listen and act on some of the things we say, which is encouraging.”
The PFAC Evolution
As time went on, the existence of PFAC evolved. Not only was the group seeing new members come in and more experienced members transition out, but PFAC also began to dig into more areas around Karmanos, not just patient care. More and more departments within Karmanos were utilizing the council’s feedback, from reviewing a brochure or stat sheet to giving their experiences at recent appointments, taste testing future in-patient menu items, testing out new patient furniture, advising website changes, and choosing photos to be displayed throughout the hospital. As Karmanos began seeing more patients from across the state, PFAC members had the idea to select images from different sites throughout Michigan. The imagery often gets rave comments from inpatients traveling from other areas for care as they come across scenery from their hometowns. PFAC members also provided input for the design and feel of the newly expanded and renovated Weisberg Cancer Center in Farmington Hills.
Giving Back and Supporting Patients Through Input
Katz is a stage IV pancreatic cancer survivor who was treated at Karmanos and has been in remission for several years. He expressed that he was looking for signs of hope while undergoing treatment.
“It was a rough go, but I was treated here. I pulled through, and with all the care and support I had here, it felt right to give something back, which is why I got involved with PFAC,” said Katz.
After four years in PFAC, Katz continues to be involved and has significantly contributed to positive change in cancer care.
Fred, who has co-facilitated PFAC since forming the group, has fond memories of many members. That includes a Ford executive who was an engineer by trade. This survivor was skeptical of Reiki therapy. One day, a nurse practitioner decided to demonstrate the therapy, and this survivor volunteered.
Pictured from left to right: Robert Brooks, PFAC co-chair; Valerie Fred, PFAC co-facilitator; and Howard Katz, PFAC co-chair
“He walked up to the front of the room, removed his shoes, climbed on the table,” she described. “When he was done, he walked back to his seat, seemingly super relaxed. Only after he took his seat did he realize he had walked barefoot, leaving his shoes at the table. He was sold! The group became a huge advocate for complementary therapy.”
Reiki therapy is offered at Karmanos, with the continued support of PFAC, along with other integrative therapies and services. This same survivor passed sometime after this experience. Karmanos presented a white coat to his family at his funeral, making him an honorary Karmanos physician.
“He always had suggestions to provide, always working to make it better for the next patient,” Fred shared.
Multiple myeloma survivor Robert Brooks has only been part of PFAC for a year, but he’s already stepped up in a leadership role. Brooks serves as co-chair alongside Katz. Though he’s just starting, his leadership sparks a bright future for PFAC.
“I was encouraged to join, but I always wanted a voice to give back to the care that I received at Karmanos,” he expressed. “I thought my care was superior, but there were always things that could be better, and I wanted people to have the same kind of care I had.”
“What I found in being a voice on this advisory team is that it's a true team that looks at the patient care that we’ve received, looks at how our families and others that we know are receiving care, whether it be at Karmanos or other places, and we contrast that care so that the care at Karmanos is better and sets the bar.”
In 2024, the drive and passion for improving Karmanos for current and future patients still lives on. During the 25th Anniversary celebration on December 5, 2023, a plaque was revealed that honors all past and present PFAC members. That plaque hangs in the Thomas Angott Board Room at Karmanos.
The Patient and Family Advisory Council welcomes new members. If you’re looking for ways to give back to Karmanos and impact cancer patients’ lives, contact Valerie Fred at 313-576-8676 or [email protected]. Learn more about PFAC here.