Co-creating care: hope in action
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Change takes time, but hope moves faster.
That’s a driving force behind the work Cheryl Heykoop and the team at Anew are doing in partnership with adolescents and young adults (AYAs) with cancer throughout BC.
“We are actively seeing change happen in the system,” says Heykoop, an associate professor in the Master of Arts in Leadership Health Specialization program and a Michael Smith Health Research BC Scholar. “We’ve been working in partnership with BC Cancer, BC Children’s Hospital and other partners, and working together with AYAs to really get a sense of what it is they want and need.”
Every year, nearly 9,200 young adults aged 15-39 are diagnosed with cancer in Canada. That is almost one young person every 57 minutes who receives the news that life is now uncertain during a time when they were focused on building their futures – thinking about independence, their education and careers, starting a family, and perhaps, taking care of aging parents.
The current cancer care system is more tailored to pediatric and older patients, leaving this emerging demographic to navigate a system that wasn’t designed for them, Heykoop says.
It started with a conversation in 2022 when AYAs and care providers met to explore their hopes to improve the cancer care system for AYAs navigating cancer. Fast forward to today, and Anew, a research collaborative based at Royal Roads University, has been working collaboratively with AYAs and care providers to turn many of those ideas into real change.
Turning ideas into action
AYAs wanted a trusted source where they could find available resources so they codeveloped the BC Cancer AYA health info page.
They wanted better access to counselling. A recently completed pilot project saw patients connected to a counsellor within 48 hours of receiving a breast cancer diagnosis, and now the team is looking to expand that program, Heykoop says.
To help people understand what it feels like to have cancer as a young person, AYAs developed an immersive performance for clinicians and other AYAs. It was filmed so that more people could experience it.
Fertility was another common concern. In collaboration with BC Cancer and BC Children’s Hospital, AYAs codesigned a series of resources – a care pathway, brochures, and a tip sheet for clinicians about how to have the conversation. There’s a new referral form to fertility clinics, and they are working on integrating a prompt into the online medical record, Heykoop says.
“Fifty percent of AYAs, when diagnosed, have a conversation about fertility preservation, which, from my perspective, isn’t enough. Everyone should be having that conversation,” she says. “Now there is a suite of resources that we have shared with more than 1,200 care providers across the province.”
Centering younger patient voices in research
The momentum is in response to a growing number of cancer diagnoses in AYAs, and second to that, Heykoop credits the success of the work to the approach of centering the experiences and perspectives of AYAs in everything they do.
“Collectively, it’s changing practice, but it’s also changing how we do research well with patients,” she says, noting they have worked with 150 AYAs to date. “Throughout our work, we are really committed to ensuring patients are at the centre of the research and they are involved in co-creation.”
We are asking, “What is it about your story that is important to share with other young people?” Heykoop explains. Taking care of the people participating is also central to the work. AYAs involved in the projects have access to paid counselling services, supported by grant funding.
“It’s so important,” she says. “If we are actually going to do this work and do it well, we need to make sure the people who are involved are resourced and supported in the ways they need to be.”
As Anew prepares to present its work at the BC Cancer Summit on November 21, the focus is shifting from pilot projects to provincewide implementation. The session, Co-Designing a Cancer Care & Support Program for BC, is an opportunity to celebrate how far they have come while setting goals and actions for the future, she says.
“I think about all of the AYAs that I have met who have been so dedicated to creating change and are no longer here. They have left such an impact,” Heykoop says. “They and all the other AYAs we work with keep us moving forward. It’s our responsibility to do better. We can do better, together.”
To learn more about Anew visit anewreearch.ca. Anew acknowledges the generosity of the Rix Family Foundation for their support. If you wish to support Anew, donations are gratefully accepted through the RRU Foundation website.