Sean Hillier is working hard to prioritize Indigenous voices when it comes to health research

During a recent research trip to the Canadian North, Sean Hillier received a rare honour: he was invited to take part in a whale hunt with members of the local community.

“The hunt is life-sustaining,” says Dr. Hillier, an associate professor in health policy and management. He also holds a research chair in Indigenous health policy and One Health at York University. “It is culture; it is foundational to who folks are. To be invited to take part in that … shows a deep appreciation and respect both ways.”

Dr. Hillier’s friend and colleague, Ruth Green, director of the school of social work and the chair of the Indigenous research ethics board at York, says Dr. Hillier has the unique gift of being able to build relationships across Indigenous nations.

“That’s a big deal in Indigenous research, especially when you’re looking at something like health, where the health of the land and the health of the people are so tied together,” she says.

The invitation speaks to the level of respect Dr. Hillier, a queer Indigenous scholar who is Mi’kmaq on his mother’s side and a member of the Qalipu First Nation in Ktaqmkuk (Newfoundland), earns from the partners in his research.

“To try and make people feel heard and represented, and to do things to try and better the people I work with and the communities I work with – that’s the foundation of what I do,” says Dr. Hillier.

In addition to his role as research chair, Dr. Hillier also serves as interim director of the centre for Indigenous knowledges and languages at York. What’s more, he’s also the associate director of the Connected Minds: Neural and Machine Systems for a Healthy, Just Society program – a federally funded initiative dedicated to thinking through the implications of AI, smart tech and society – which received $105 million from the Canada First Research Excellence Fund (CFREF). The project will ultimately engage more than 50 community partners and research collaborators to bring the overall investment in the project to $318.4 million. The centre for Indigenous knowledges and languages was one of the core research units to support the application, and Connected Minds has a significant Indigenous component.

“To try and make people feel heard and represented, and to do things to try and better the people I work with and the communities I work with – that’s the foundation of what I do.”

“My great interest is thinking through Indigenous health and Indigenous health governance and policy, and I think all of those are tightly intertwined,” Dr. Hillier says. “I’m very interested in the impacts of tech and AI on Indigenous data governance, on Indigenous sovereignty, and on Indigenous colonization via new emerging technologies.”

As a scholar, he clearly has a finger in a lot of pies, and he admits it doesn’t hurt that he naturally has a lot of energy. “The work I do seems sporadic to some folks, but to the people I work with, it’s all about responding to community’s wants and needs,” he says.

Dr. Green laughs and acknowledges that his energy sometimes helps kindle her own. “There are times when I’m like, ‘Oh my God, I don’t want to,’ and then I have a meeting with Sean,” she says. “That energy becomes passion and that passion becomes infectious.”

Central to all of Dr. Hillier’s work is the idea of One Health – a United Nations initiative that takes an integrated approach to balancing the health of people, animals and the environment – which evolved in response to the emergence of new pathogens and the spread of infectious diseases such as COVID-19.

Read more: Making the case for One Health

Dr. Hillier also has a background in HIV and infectious diseases, which grew out of his role years earlier as the chair of Pride Toronto during the international celebration of WorldPride 2014.

“Most of my work is still around HIV,” says Dr. Hillier, “looking at the HIV response for Indigenous Peoples in the province of Ontario.” In late July, Dr. Hillier presented some of his research at the 25th International AIDS Conference in Munich, Germany.

“We presented some really significant findings that came out of the Ontario Cohort Study that looked at clinical frailty amongst people who are living with HIV.” Significantly, when the original study didn’t have any Indigenous data governance attached to it, he and his colleagues met with the community to create an Indigenous data governance process. Out of that, they were able to look at aging and access to care for Indigenous individuals living with HIV.

“We ran some analysis around frailty and saw that Indigenous Peoples are gaining clinical frailty much earlier than others who are living with HIV,” he says. “Indigenous people who are living with HIV are clinically frail around 50. So how do community organizations mobilize to ensure that people are getting the care they need when they need it, and that we’re supporting them in a really good way?”

Dr. Hillier also sits on a Public Health Agency of Canada task force on Avian Influenza A(H5Nx), bringing a One Health lens to that emerging pandemic.

“We’re trying to … ensure that Indigenous voices are included from the very beginning, to start thinking about what a potential response looks like,” says Dr. Hillier. “Indigenous Peoples are the experts that understand the land, that understand our animals and are potentially impacted by emerging infections.”

His drive to improve lives through his research is a quality Dr. Green says is just a part of who Dr. Hillier is.

“He is a beautiful, caring person. Yes, he has the integrity of a good health academic whose mission is to support good Indigenous research, but he’s also a good human being,” she says. “I trust and believe in his ethics and his way of operating.”

“I feel that there’s an indebtedness that I have to give back in all of my research to communities that I’ve benefited from,” says Dr. Hillier. “And similarly, I had some great mentors through my master’s, through my PhD. … So, to come into an institution and be able to give that back to other scholars, to new trainees, I feel is a core responsibility of who we are as Indigenous people.”

It’s a responsibility Dr. Green says he is living up to.

“Sean is his ancestors’ best dreams and all of our descendants’ greatest hope.”