Putting Indigenous Ways of Knowing at the centre of understanding cancer care

When health-care providers come together for Indigenous Cancer Patient Multidisciplinary Rounds, the conversation extends well beyond cancer treatment.

The monthly rounds unite health-care providers, Indigenous patient-navigators, Elders and Knowledge Keepers to consider not only a patient's medical needs, but the social, cultural, spiritual and systemic factors that can affect their health and access to care.

Veronica Big Plume, a research assistant who worked on a study exploring the rounds, says that whole-person approach is central to them.

“Indigenous Cancer Patient Multidisciplinary Rounds are distinct because they are intentionally relational, culturally grounded and focused on the whole person, rather than solely the disease,” says Big Plume.

Since 2020, Cancer Care Alberta (CCA) has operated the rounds in Calgary and Edmonton, allowing providers and support people from across the health system to collaborate. CCA also partnered in the research, which explored the impact of the model and produced resources to help other care teams learn from the approach.

A recently launched website collects the project's findings, short films and practical resources for health-care providers interested in participating in Indigenous Patient Rounds or developing a similar model in their own setting.

Rethinking the research process

The Telling the Stories of Indigenous Cancer Patient Multidisciplinary Rounds project was co-designed by Indigenous and non-Indigenous researchers, clinicians, Elders, Knowledge Keepers and other collaborators. The group spent about a year-and-a-half developing the approach, including how stories would be gathered, interpreted and shared. 

The work was grounded in the First Nations principles of OCAP®, which stands for ownership, control, access and possession.

For Dr. Jessica Simon, MD, a member of the O'Brien Institute for Public Health and the Arnie Charbonneau Cancer Institute at the Cumming School of Medicine (CSM), that meant reconsidering some of the assumptions that can come with conventional academic research.

“It requires a shift in thinking for universities and researchers, being humble and understanding how to partner in a good way,” says Simon, a professor in the Department of Oncology at CSM. That includes reconsidering conventional approaches to who owns, controls and stewards the information generated through research.

Simon and Big Plume completed OCAP® training as part of the project, and the principles they learned through their training informed the work from research ethics through to the stewardship of its outputs.

The resources developed through the project are stewarded by the Alberta First Nations Information Governance Centre (AFNIGC), rather than by UCalgary.

From evaluating impacts to telling stories

The co-design process also shaped the language and concepts the team used. 

“There were a number of times where, because Veronica as an Indigenous researcher and myself as a non-Indigenous researcher were interpreting the data together, we were able to appreciate where our worldviews differed,” Simon says. “By combining our worldviews, but grounding the work in Indigenous Ways of Knowing, we were able to get a full understanding of the impact of rounds.”  

Simon says a conventional approach focused on quantitatively measuring the rounds would have missed much of what mattered.

The research revealed the rounds can help care teams identify ways to work together to overcome barriers such as transportation, housing during treatment and inequities of the health-care system. They can also help providers understand how previous experiences of discrimination or a lack of culturally safe care may shape a patient's interactions with the health system.

Big Plume says that can move the conversation from, “What is the matter with the patient?” to, “What matters to the patient?” with care better reflecting patients' needs, values and connections to family, culture and community.

Impact extends beyond individual patients

The research also found that the rounds can have an impact on the people providing care.

Providers working individually can face the same systemic barriers and complexities their patients are navigating. Coming together gives them an opportunity to learn from one another, build relationships and find new ways to advocate for patients.

“When groups of individuals come together to work with really, really difficult issues, colonial legacy, systemic barriers to care and enduring racism, it's amazing how powerful that is,” Simon says.

One finding that particularly stood out to Simon was the role of spirituality. The rounds begin with an opening prayer, smudging or ceremony. The research team incorporated similar practices into its own meetings.

“It grounded all of us in coming to that work with open hearts and open minds,” says Simon. “One of the surprises for me was how central spirituality is in the outcomes that we then heard from rounds.” 

Braiding the findings together

The interconnected nature of the findings is represented through braided sweetgrass.

Elder Ann Fox helped the research team understand the cultural significance of sweetgrass and how its three strands could represent community coming together to care for someone who is sick. 

The research identified three main themes and nine sub-themes, but Simon says trying to separate them didn't reflect what the team had heard. Relationships between patients, communities and providers, and physical, mental, emotional and spiritual aspects of care, were closely connected.

The new website includes information about the rounds and research, a collection of short films created by Faculty of Nursing researcher Dr. Mike Lang, PhD, and handouts for health-care providers who want to join existing rounds or explore developing rounds in their own setting.

Helping others learn from the model

While the research focused on cancer care, the team hopes the resources will be useful to providers working with Indigenous clients in other areas of the health system. The work also aligns with Cancer Care Alberta's Our North Star to Action, which includes a commitment to fostering safer, welcoming and supportive cancer-care environments.

“Improving care for Indigenous patients requires more than adding a program, it involves shifting how we listen, learn and work together,” says Big Plume.

She hopes the work encourages health-care teams to make cultural safety part of everyday practice and consider how relationship-building, collaboration and Indigenous voices can shape the way care is provided.

The project began with an O'Brien Institute Catalyst Grant. Simon says the funding was critical because it allowed the collaborators to meet in person and spend time building the trust, relationships and mutual understanding needed to develop the project together.

The team later received funding through the College of Physicians and Surgeons of Alberta's Healthier Albertan Grant program to continue the work.