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, conducting 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 designs 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 and diverse 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 representative as possible, we aim to recruit those with lived experience across all cancer stages and tumor sites. Patients can be anywhere from new diagnosis to living beyond cancer. We are looking for both rural and urban representation as well as individuals of diverse ages and backgrounds. Most meetings will be held via zoom to ensure travel is not a barrier.
Members will engage and contribute to the advisory council providing insights and feedback for the research programs at large. Some members may also be asked to provide additional insights and feedback for specific projects on an ad hoc basis, and relevant to personal experience and availability.
The value added in having patient and family members as part of the advisory council is in ensuring that the patient and family voice is included in research priority and design. The patient and family voice adds relevancy to research and ensures research activities are patient focused, and the results are meaningful, and accessible to those the research is intended to benefit. Members will also have an opportunity to share results of studies within their individual networks (formal or informal) supporting results to be implemented and accessed sooner and in more universal and inclusive formats.
Members of the advisory council are asked to uphold the patient voice and best interests while engaging with research teams. Broadly they will be involved in the council working with researchers to ensure the patient and family experience of cancer are consistently understood and considered. For select individual projects, advisory council members may be asked to collaborate with the research team, partnering throughout all phases of the research project.
This opportunity is to join an existing council. We are hoping members are able to make a commitment for two years.
The advisory council holds meetings on a quarterly (4 times per year) basis. Meetings will be held via Zoom and Zoom training and support can be provided to members unfamiliar with this video conferencing platform. Project specific meetings will be held on an ad hoc basis.
Meeting materials will be provided in advance of meetings, and the advisory council will co-develop a strategy to decide the best formats for sharing agendas, meeting notes, etc.
Quarterly meetings will be 90 minutes. The first meeting will likely be 120 minutes to allow ample time for introductions. Project meetings are estimated to be 60 minutes in length.
Advisory council members will be offered compensation at a rate of $50/meeting for quarterly meetings. Compensation for project meetings will be offered at a rate of $25/hour. We will have individual conversations with each member about methods of compensation.
This opportunity is anticipated to be online only so there are no direct expenses (i.e. travel or parking) associated with engagement.
University of Calgary Foothills Campus
3330 Hospital Dr NW
Calgary, AB T2N 4N1
1702, 8215 112 St NW
Edmonton, AB T6G 2C8
The Alberta SPOR SUPPORT Unit operates on and acknowledges the lands that are the traditional and ancestral territory of many peoples, presently subject to Treaties 6, 7, and 8. Namely: the Blackfoot Confederacy – Kainai, Piikani, and Siksika – the Cree, Dene, Saulteaux, Nakota Sioux, Stoney Nakoda, and the Tsuu T’ina Nation and the Métis People of Alberta. This includes the Métis Settlements and the Métis Nation of Alberta. We acknowledge the many First Nations, Métis and Inuit who have lived in and cared for these lands for generations. We make this acknowledgment as a reaffirmation of our shared commitment towards reconciliation, and as part of AbSPORU’s mandate towards fostering health system transformation.