Exploring the Development, Evaluation, and Impact of Researcher-Led Patient and Family Advisory Councils in Cancer Research

OBJECTIVES: Patient engagement is essential to establishing patient-centered care, which in turn, positively impacts the patient experience, builds trust between patients and providers, and creates more empowered patients. Patient and family advisory councils (PFACs) are one mechanism to engage with patients, caregivers, and families. Our team at the University of Calgary established a 12-member PFAC in 2021 to garner input on research and quality improvement initiatives. After the first year, we evaluated the initiative.

METHODS: The council was developed in consultation with the Alberta Strategy for Patient-Oriented Research team. Recruitment focused on balanced representation of cancer tumor sites, age, race, sex/gender, and geographic location. Evaluation included an online survey based on The Public and Patient Engagement Evaluation Tool, focusing on communication and supports for participation, sharing views and perspectives, and overall satisfaction.

RESULTS: The response rate for the survey was 50%. All respondents agreed or strongly agreed that the PFAC achieved its objectives, and they are satisfied with the initiative. Most felt that a broad range of perspectives were represented, and they were confident that their input will be used to inform research and be clinically impactful. Strengths included member input being highly valued and the two-way exchange of knowledge. Increased communication between meetings was an area for improvement.

CONCLUSIONS: Recognizing the lack of evidence for the adoption and implementation of guidelines and evaluation of PFACs, we plan to host a one-day symposium with health researchers, healthcare professionals, patients, and their caregivers from across Canada who have experience in forming, leading, or participating in PFACs to share their perspectives. Further work on the recruitment and engagement of minority groups typically underrepresented within PFACs is also underway via a scoping review.