When Colten Brass, Muskoday First Nation, started having Crohn’s disease symptoms in 2018, he had trouble obtaining referrals to specialist care. He eventually had to spend three months in hospital. He realized he would have to advocate for himself. With the vital help of his sister – a nurse – he finally found answers.
Today, while managing his health, Colten also advocates for others and for the medical community to better understand the nature of inflammatory bowel disease (IBD), a group of conditions, of which the two main forms are Crohn's disease and ulcerative colitis. He is one of the Indigenous patient partners involved in the IBD among Indigenous Peoples Research Team co-lead by Dr. Juan-Nicolás Peña-Sánchez at the University of Saskatchewan.
“Our work started after listening to Indigenous patients and family members who shared experiences living with IBD,” says Dr. Peña-Sánchez. “It triggered a question of what evidence there was about this disease specifically among Indigenous groups in Canada and worldwide.”
The answer: very limited information about these individuals and their experiences in the healthcare system. To address this gap, Dr. Peña-Sánchez helped create a team of Indigenous community members and researchers to study barriers to care and the evolution of the number of new diagnoses and the overall number of people living with the diseases–beginning with First Nations groups in Saskatchewan.
Another Indigenous community member is Rhonda Sanderson, James Smith Cree Nation. She says she felt isolated dealing with Crohn’s disease. She did not know any other Indigenous person who experienced what she felt. She too, had to advocate for herself when various treatments caused difficult side effects.
“I joined this study group so that the next Indigenous person diagnosed with Crohn’s doesn’t have to feel alone,” Rhonda says. “They’ll know they have a group of people who can support them.”
Rob and Linda Porter from York Factory First Nation and One Arrow First Nation, have been part of this research group for four years, in memory of their late daughter Lisa who lived with Crohn’s disease. They remember their struggles to navigate the system, finding roadblocks to care.
“We’re passionate about ensuring a better future for patients,” Rob says. “We want to make it easier for others to navigate through this complicated path.”
Dr. Peña-Sánchez put these types of experiences front and centre in decisions around research. It led to a new study comparing the journeys of First Nations members to the general population in Saskatchewan. The key takeaways:
- Indigenous patients have ongoing concerns about access to specialized care.
- They have a higher risk of hospitalizations and fewer medication claims, likely due to barriers to access specialised care.
“We hope this evidence is shared broadly and want to inspire research groups in other provinces to follow our research framework to improve care for Indigenous peoples, and all Canadians, with IBD,” Dr. Peña-Sánchez says.
Next for the team is to design an “Indigenous peer navigator program” – a tool to support patients and help guide their journeys through the system, improving their access to culturally safe and personalized care.
Jessica Osei, a University of Saskatchewan researcher who is also a part of the IBD among Indigenous Peoples Research Team, adds:
“One of our patient partners said she wanted her access to care to become welcoming and effortless. This touched me because when I go to my doctor, I want to be safe and comfortable and have my issue addressed without having to stress or advocate for myself.”
The overall number of Indigenous individuals in Canada with Crohn’s and colitis is increasing by four percent each year compared with a three percent annual increase in the general population.
The 2023 Impact of Inflammatory Bowel Disease in Canada report highlighted the fact that Indigenous peoples face additional barriers to care. The report highlighted that little research has been done for these communities to date and called for more to be done to better meet their needs.