Opportunities - Patient and Family Advisory Council: Cuthbert Lab and Oncology Outcomes

Patient and Family Advisory Council: Cuthbert Lab and Oncology Outcomes

University of Calgary

 Background

The goal of developing a patient and family advisory council is to engage with cancer patients and their families to provide input on research to improve the health and health outcomes of cancer patients and their experience in the health care system. Engagement means “the involvement of patients engaged with researchers in activities of governance, priority setting, conduct of research, knowledge translation and evaluation”. Patient engaged research means “collaborative research that is done by, with and for patients to inform health care and health research decisions and questions”. Members of the council will provide input and feedback on research priorities and programs for the Cuthbert Lab and Oncology Outcomes research groups.

We recognize that patients and families have unique experiences and knowledge about their cancer and the cancer care system. We value input from these stakeholders to ultimately drive more meaningful, relevant and patient centered research.

Input from our advisory council will ensure that patient and family centered goals are at the forefront of any outcomes (or evaluations of existing health, health outcomes and care practices) and interventions developed through research studies. This aligns with the Cuthbert Lab and Oncology Outcomes mandates to conduct research that leads to improved patient and family outcomes.

To make the council as diverse as possible, we aim to recruit across all stages and tumor sites. Patients may be anywhere from new diagnosis to living beyond cancer. Most meetings will be held via Zoom to ensure no additional barriers with travel. Representation from diverse tumor sites and demographics will be sought to ensure diverse points of view.

 

Roles and Responsibilities

Members will engage and contribute to the advisory council providing insights and feedback for the research programs at large. Select members may be asked to provide additional insights for specific projects on an ad hoc basis, suited to personal experience and availability.

Members of the advisory council are asked to uphold the patient voice and best interests while engaging with the research teams. Broadly, they will be involved in the council by working with researchers to ensure the patient and family experiences of cancer are consistently understood and considered. For select individual projects, advisory council members may be asked to collaborate with the research team, partnering with researchers throughout the entire project.

 

Time Commitment

The advisory council will accept members for two-year terms with possibility of renewal. We plan to hold the first meeting in June 2021 if the council seats are filled.

The council will hold four meetings per year via Zoom and training and resources will be provided for council members unfamiliar with this video conferencing platform. These quarterly meetings will be 90 minutes however the first meeting will likely be 120 minutes to allow ample time for introductions.

Project specific meetings will be held on an ad-hoc basis. Meeting materials will be provided in advance of all meetings and the advisory council will determine the best format to engage and prepare for meetings, such as through details agendas, blog posts, etc. Project meetings are estimated to be 60 minutes in length.

 

Reimbursement/Compensation

There are no anticipated travel expenses associated with this opportunity at this point as all meetings will be online. Should any out-of-pocket expenses associated with engaging on this project be incurred, they will be reimbursed.

Council members will be compensated at a rate of $50/meeting for quarterly meetings. Engagement in project meetings will be compensated at a rate of $25/hour. Compensation methods will be discussed in advance.

 

Interested in applying or learning more, please contact

Christie Farrer, Program Lead                Dr. Colleen Cuthbert, Principal Investigator

christie.farrer@ucalgary.ca                     cacuthbe@ucalgary.ca