Grant: Patient-Oriented Research Collaboration Grants

The Alberta Cancer Foundation is a registered charity that raises funds to invest in cancer prevention, screening, research and care enhancements in Alberta. The Foundation has committed to bringing patients and families more fully into every aspect of our cancer investment cycle: •Identifying gaps in cancer prevention, screening, care and research •Setting investment priorities and themes •Co-developing investment and research opportunities •Assessing proposals from researchers and clinicians •Recommending program investments A cornerstone of this strategy is ready access to a roster of patient advisors who can inform cancer care through their lived experience, and ultimately to advise on topics such as cancer research and system-level enhancements. However, there is currently no roster of cancer patient advisors in Alberta that is accessible to the Foundation. The goal of this project is to cultivate a sustainable and accessible roster of patient advisors that can be meaningfully engaged in informing future investments in cancer. Research suggests critical features and underpinnings of this Patient Advisor FANbase Program include: privacy, ethics and regulatory requirements; database software requirements; and operational protocols regarding advisor recruitment, registration, orientation, training, opportunity matching and placement. Before further developing and implementing the program, comprehensive engagement with patients and family members is required to ensure the program design meets the needs of stakeholders. Consultation approaches will be based on the five levels of engagement from the International Association of Public Participation (IAP2). Once the roster is fully functioning, the Foundation will be able to routinely invite patient advisors to share their cancer experiences with clinicians and researchers; invite advisors to join working groups; and add patient representative positions to advisory and review committees.