In Canada, approximately 7,600 adolescents and young adults (AYAs) aged 15 to 39 are diagnosed with cancer each year, representing 4 percent of annual cancer diagnoses. Currently, cancer care systems have limited capacity to meet the complex needs of AYAs and survival outcomes for AYAs are often worse when compared to children and adults over 40.
This research program will use the principles of participatory action research (PAR) and patient-oriented research (POR) to meaningfully engage AYAs and cancer care allies (healthcare professionals, decision makers, researchers, and community organizations) to better understand AYA cancer care and explore how cancer care systems can respond to the unique, complex needs of AYAs with cancer. Led by a researcher with lived experience of cancer as an AYA and 15 years of experience conducting PAR, the work seeks to inform AYA cancer care research, policy, and practice in BC and beyond. Initial research funding from the Vancouver Foundation, MSFHR, and British Academy is in place, as are collaborators from Royal Roads University, BC Cancer, BC Ministry of Health, Young Adult Cancer Canada, the BC SUPPORT Unit, Callanish Society, InspireHealth, Innovation Support Unit, and AYAs with cancer.
- Cheryl Heykoop
Royal Roads University
Research user co-lead:
- Catherine Clelland
BC Cancer Agency
- Jennifer Cartwright
BC SUPPORT Unit
- Karine Chalifour
Young Adult Cancer Canada
- Nicol MacPherson
- Lisa McCune
BC Support Unit
- Nicolette McGuire
Research and Innovation – Ministry of Health
- Morgan Price
University of British Columbia, Innovation Support Unit
- Danielle Schroeder
- Genevieve Stonebridge
In Canada, approximately 8000 young adults (aged 18 to 39) are diagnosed with cancer each year, representing 4% of cancer diagnoses annually. Currently, cancer care systems have limited capacity to meet the complex needs of young adults with cancer and young adult cancer care is generally underrepresented in cancer education and research. However, research indicates that young adults with cancer have a clear understanding of how their care could be improved and want to play an active role in doing so.
This C2 grant would support 20 young adults with cancer and 20 cancer care allies (health care professionals, decision-makers, researchers, and community organizations) in BC to come together for a two-day meeting to share experiences of young adult cancer care and to identify key research and practice priorities to improve young adult cancer care in BC.
Key outcomes include:
- strengthened relationships and partnerships between young adults and cancer care allies;
- identification of key research and practice priorities to improve young adult cancer care in BC; and
- the co-creation of a high-quality report and two knowledge products to share learnings and priorities widely.
Research user co-leads:
- Alisa Harrison
(Victoria Division of Family Practice)
- William Cunningham
- Bryn Meadows
- Cindy Trytten
The proposed activity is to develop, host and facilitate a two-day workshop with key system partners, and physicians, to identify practice and policy priorities, and strategize next steps. Physician engagement represents the next step in the broader research agenda — to support implementation and practice change. The expected outputs of the workshop include:
- The development of a plan to implement the research evidence through transforming how primary care is delivered to people who use substances.
- A strategy for collaborating with primary care physicians, with a long-term goal of improving access to and quality of primary care for people who use substances.
This workshop will be co-facilitated with peer research associates who are trained in recovery and have lived experience with substance use. It will focus on looking at how the evidence from the concept mapping (currently underway) with people who use substances can enhance primary care services for people who use substances. This will be integrated with substantial data from the Victoria Division of Family Practice on what physicians need to support this population. One output is developing guidelines for physicians who work with substance users across the full spectrum, from youngsters experimenting with substance use, to recreational drinkers and drug users, to those using illicit substances and experiencing serious health and social impacts.
The content produced as part of the workshop will leverage evidence from an ongoing patient-oriented research project that this team is conducting, funded by a Strategy for Patient Oriented Research Collaboration grant, led by team members at the Centre for Addictions Research of BC at the University of Victoria, the Centre for Health Leadership and Research at Royal Roads University, and patient partners from two non-profit peer support organizations, the Society of Living Illicit Drug Users and the Umbrella Society (which support people who use substances). In both projects, the team will collaborate with people who use substances to better understand how to reduce stigma and increase accessible, appropriate primary care services for them.
The purpose of this initiative is to develop leadership capacity in the Canadian health care system. This will be done by identifying and addressing gaps in applied research and practical knowledge within and between the researcher and decision-maker communities. These individuals will be brought together as networks so they can better understand and learn from each other. The networks (one national and five regional nodes) will carry out research on how to identify and apply the qualities of effective leadership in regional settings across Canada and how to adapt the knowledge learned into professional development and degree programs offered in those regions.
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