Health data collected from Indigenous Peoples in Canada has a dark history. One Indigenous company is turning that around

In the 1980s, Nuu-chah-nulth people on Vancouver Island donated more than 800 vials of blood for research on rheumatic diseases prevalent in their communities. Their hope was to help find a cure.

Decades later, however, they learned the samples they supplied had led nowhere and were instead used for unapproved studies in genetic anthropology.

“Just because we’re First Nations doesn’t mean you can do whatever you want with us,” a donor told Indigenous newspaper Ha-Shilth-Sa in 2004.

But cases like this highlight a dark history of medical researchers doing just that: subjecting children in residential schools to experiments involving intentional malnutrition and patients at Indian hospitals to treatments without their consent.

This week, at a ceremony in Victoria, the Canadian Medical Association (CMA) issued a formal apology for its role, and the role of the medical profession, in harms to Indigenous Peoples – including the unethical collection and misuse of health data that has contributed to ongoing mistrust of the health system and avoidance of care.

The CMA states that the apology is a critical first step towards reconciliation and better Indigenous health outcomes. Another, says Mark Sommerfeld, is enabling Indigenous data sovereignty, ensuring that Indigenous Peoples have control over their own health information, from clinical records to data collected for medical research.

Sommerfeld is the CEO of Mustimuhw Information, named for a Coast Salish word for “all of the people” or “all my relations.”

Owned and operated by Cowichan Tribes on Vancouver Island, the software company develops medical records systems that are built on a foundation of Indigenous traditions and values, allowing health providers working in First Nations communities to capture data informed by their cultural practices, ways of communicating and culturally guided care environments.

For example, Sommerfeld says, “A lot of our services in Indigenous communities are offered in a group setting,” rather than one-on-one interactions in a doctor’s office. The group dynamic demonstrates the value of honouring the collective, working together with humility and supporting others.

“Standard software used by physicians isn’t designed for [this],” he says, explaining that Mustimuhw incorporates factors like these into their applications.

The group is key to Indigenous definitions of health, as well, another nuance that can be overlooked by health-care systems or misinterpreted, Sommerfeld says. “When we build our software, we understand that ‘health’ to First Nations is more than health. It’s not only about an individual, but also about wholistically building and supporting a Nation.”

To reflect this, Mustimuhw collaborates closely with clients as data systems are developed. Sommerfeld points to a nursing program offered through the Nuu-chah-nulth Tribal Council, a non-profit health service for 14 Nuu-chah-nulth First Nations. The program is rooted in traditional nursing practices and standards developed by the community, and that lens is applied to the digital tools they use.

Sommerfeld notes that First Nations data systems must ultimately work in two worlds, providing standard health information in commonly used formats while also meeting community needs. “It’s crucial that the data stored using Mustimuhw allows for interoperability within western medical systems as needed,” he says.

But sharing health data effectively does not diminish the strength that comes from Indigenous people stewarding that data. Dr. Ryan Giroux, a Métis general pediatrician in Toronto, sees data sovereignty as “a natural extension of self-determination and self-governance.” This autonomy, he says, “shifts the power imbalance Indigenous people have felt within the health-care system.”

Giroux references the significant difference even subtle changes in patient-physician communications and interactions can make. “Research has proven that when a physician shifts the approach from a place of knowledge and authority to being a ‘curious partner’ in someone’s health experience, the health care received, and patient experience, is greater and more effective.”

Making space for Indigenous data governance, he says, is a tangible step towards the decolonization of health care, for individuals as well as Indigenous communities as a whole.

Dr. Alika Lafontaine, an anesthesiologist in Grande Prairie, Alta., with Métis, Oji-Cree and Pacific Islander ancestry, was the first Indigenous president of the CMA and has been instrumental in the organization’s apology. He says data sovereignty also means that the narrative around information that’s collected is grounded in lived experience.

“There are nuances to data and the fact that you have data doesn’t mean it is always valuable,” he says. “Data without context isn’t valuable.”

In the movement towards Indigenous data sovereignty, the First Nations Information Governance Centre has established a framework for success based on four principles – the ownership, control, access and possession of information, or OCAP.

In stark contrast to the horrific medical experimentation conducted without the consent of Indigenous patients, OCAP puts Indigenous Peoples at the centre of decisions about health data.

“OCAP was first used as a value change in looking at Indigenous health sovereignty,” Lafontaine says. “It’s about establishing an aligned interest and learning what people want to share.”

Information on young Indigenous patients with genetic syndromes, for example, can help with testing, screening and diagnosis, he says.

As the technology used to harness and analyze data continues to advance, Lafontaine says the need for Indigenous leadership, knowledge and innovation will continue to grow. Direct engagement with AI tools, for instance, will be critical to ensure the accuracy of data cited and how it informs health care decision-making.

“For Indigenous data sovereignty, the focus needs to be on the ‘why and what,’ instead of just ‘how,'” he says.

“If First Nations aren’t included, then we will become the product.”

This piece is part of a partnership between the Canadian Medical Association (CMA) and CTV News. For more information on the CMA, visit www.cma.ca.