SCPOR trainee José Diego Marques Santos works for the SPROUT Grant award-winning team lead by Dr. Juan-Nicolás Peña-Sánchez. This project is called “Understanding and advocating for Miyo-Mācihowin (good health and well-being) among Indigenous Peoples living with Inflammatory Bowel Disease”
-By Farha Akhtar
Coming from nursing background, José Diego Marques Santos was already keenly aware of the burden a disease can place on a patient, and their loved ones. So when the SCPOR trainee joined a patient-oriented research project that focuses on Indigenous people living with IBD - or Inflammatory Bowel Disease - he was fully prepared to hear stories of loss, struggle, and survival.
What he was not expecting were the close friendships he would develop with the patient partners who are part of this research project. Their dedication to the research team, and their willingness to share their lived experiences has proven to be an inspiration for the young researcher.
“We don’t always talk about research,” explains José.
“We also talk about life. We laugh a lot when we are together. It has helped us build trust and a relationship with one another.”
As José points out, there is a tremendous amount of vulnerability required to be both a patient engaged in research, and to be a researcher engaged in patient-oriented research. José says his foray into patient-oriented research under the supervision of Dr. Juan-Nicolás Peña-Sánchez of the University of Saskatchewan, has taught him a lot about the importance of approaching research with humility.
“We have people with different training in health: professors, epidemiologists. We have Indigenous professors, an IBD gastroenterologist, Indigenous patient family advocates and students.”
“What I like about my team is that we are very diverse. We like to really engage our patients in all the decisions of the project. When we have our meetings we want the patients to feel included and special.”
That inclusive approach was a draw for Rhonda Sanderson, one of the patient partners in the IBD research team. Rhonda has worked closely with José and only has favorable things to say about his approach to research.
“I love his sense of humor. He is so welcoming and so open to everything. I really had to put my trust in him, he was a stranger.”
“I took a big risk. It was an adventure! The adventure of us not knowing things and discovering them together.”
“His interest in my indigenous identity – he was so open and so encouraging.”
“With Jose, he is so respectful, he doesn’t go barging into a situation. He learns, he has an open mind and a kind heart. He just sits and listens. It is such a beautiful experience.”
José says the culture of openness among team members has created very positive synergy between patient partners and researchers.
“Sometimes in academia people are ashamed to share their opinion, but in our research we are encouraged to share what we think. We value every response and feedback. We want our team to not feel intimidated. I believe we have been successful in this. We are humble and we are really trying to take off our titles and put our patients first.”
Creating awareness, Creating Critical Change
José says the crux of the study is to help address the gap in knowledge about IBD among Indigenous peoples. He points out that Canada has one of the highest rates of IBD around the world, yet very little is known about what impact this has among Indigenous populations.
“There is no data on this,” he explains, “When you look at studies of IBD they don’t have specific reports or epidemiological data among Indigenous people. How many people are sick? What are the factors that contribute to it? How is health care access for Indigenous People with IBD? This is what we are trying to explore.”
That lack of understanding is something Rhonda can attest to having witnessed. She says there is a general misconception among Indigenous peoples that they cannot have IBD, and that surprisingly, she has even heard this misconception perpetuated by some medical professionals.
“I would like the medical community to be aware and know we are human – we are not an anomaly,” she says.
“I hope I raise enough awareness the doors will be that much more open for others.”
Together José and Rhonda are hoping their team’s research team will contribute to change that will improve care and outcomes for Indigenous IBD patients.
“It is nice now that they have recognized there are gaps and going about research in a really empowering way,” says Rhonda.
“For myself it is very encouraging. We are given a say and people can finally hear us.”
José adds giving voice to patients has been very rewarding and has only enhanced his research.
“When you are sick, you need your voice to be heard. We support them getting their voices heard in the health field and that is very powerful.”