From the patient's eyes: The true value of the Renal Patient and Family Advisory Council

Renal PFAC

December 16, 2021

Patients and families play an essential role in continuously improving the patient experience during their medical care. Under a collaborative approach, the London Health Science Centre (LHSC) Regional Renal Care Program has established a Patient and Family Advisory Council (PFAC). This initiative will seek to help drive positive change based on real patient experience and provide strategies to improve the bond between staff, physicians, and administration with patients and family members.

"We identified this crucial piece that is the patient and family's experience. The renal PFAC members provide advice to the renal program so improvements can be made to help other renal patients and their families," says Ashley Papathanassiou, renal PFAC facilitator. "Patients are in an expert position to provide recommendations on improving the planning, delivery and evaluation of renal care services within the framework of patient and family-centred care."

The renal PFAC is made up of renal patients, their family members, or their caregivers. Papathanassiou seeks individuals who are positive and support of patients-centred care and asks for a two-year commitment from those willing to dedicate a small amount of time every month. "Additionally, there are also opportunities for our members to join and advise on various subcommittees within the hospital if they are interested, offering an expansion of the impact they can make."

When Cathy found out she needed to be on dialysis as her kidney disease was irreversible in 2014, the renal PFAC was one way to cope with this difficult situation. "It was a wonderful avenue I could follow. After being interviewed and accepted into the council, I found many people to interact with. It opened many doors as to how it could help me and others involved in the renal world," she says.

Another critical aspect Cathy highlights as a member of the council is that, as a patient advisor, she can be actively involved with the research teams, work on the progress of studies, and communicate with professionals from the patient perspective. "The possibilities to help with the development of projects are endless.  It is exciting to see projects impact myself and other patients positively. We get the chance to make a difference," she says.

Although most efforts currently have been directed toward responding to the effects of COVID-19, the PFAC continued to focus on improving its quality of service. "For the next several years, we plan to focus on making the kidney program a more fun place to be. We recognize that no one plans for their kidneys to fail. Still, if we can help implement small new initiatives like crafts on dialysis or raffles as an example, we can improve the general mood during that treatment visit," says Papathanassiou. "That being said, we will keep our focus on the high-level elements, such as quality policies and initiatives, that provides the voice of the patient as we have in recent years, but we believe that the introduction of positive gestures can be impactful for all."