Jennifer Walker spends her days researching the health of Ontarians. But increasingly, as a core scientist at The Institute for Clinical Evaluative Sciences (ICES), her projects don’t start with a grant proposal. Instead, Walker, who is also the Canada Research Chair in Indigenous Health at Laurentian University, starts by connecting with the First Nations community her project affects.
Recently, that was through a pipe ceremony. “It was a hot summer day, but we’re in this very cool ceremonial lodge, in this beautiful space in Manitoulin Island,” she explains. “We’re sitting around the sacred fire, and experiencing this pipe ceremony. That’s the way we start the thinking about the grant, and that’s so unusual for the kind of work that we normally do as epidemiologists in large organizations.”
Walker, whose grandmother is Haudenosaunee, has become well versed in how to partner with First Nations communities on research projects. “We have to see data as a healing medicine for our communities, because without it, it’s hard to tell our stories,” she says. “Improving our communities’ ability to interpret data, use data and access data is so important.”
Research collaborations between large organizations and First Nations are becoming increasingly common, thanks to organizations increasingly recognizing their role in reconciliation, more First Nations health surveys and increasing First Nations governance of health data. Best practices — which include the OCAP principles — are being promoted by researchers like Walker, while others advocate for better data linkages and the importance of developing a Health Quality Council.
Mike Kirlew, a physician in Sioux Lookout, emphasizes that productive research in this area is crucial. “For me the goal of research is not to generate data, it’s to generate change,” he says. “I’ve found it’s very difficult to advocate effectively without research, without numbers to support these issues. No data equals no problem.”
The OCAP principles
Best practices around First Nations research reflect the principles of community-based participatory research, which encourages researchers to partner with communities in all stages of research projects. At the same time, it has its own unique needs and rights. A starting point for how to collaborate effectively on research, whether that be launching research projects or working with administrative data, can be found in the principles of OCAP: ownership, control, access and possession. (Métis and Inuit groups have similar concerns, but this article focuses on First Nations communities.)
OCAP principles were created by the First Nations Information Governance Centre (FNIGC), a national non-profit organization mandated by the Assembly of First Nations. “OCAP is just about respect for the first nations communities, for the individual and the collective rights of the community,” says Gail McDonald, executive director of the FNIGC.
That begins with the principle of ownership — the idea that a community owns their information in the same way that a person does — and of control. “Frankly, in the past researchers would parachute in, do studies and leave. Communities did not own the data, they did not control the direction of the research,” says Kirlew.
Often, a key issue to the community is the impact the research will have. “What comes out of that research is important,” says Nadine Caron, a surgeon and the co-director of UBC’s Centre for Excellence in Indigenous Health. “When you’re in a relationship that’s more than just getting the research done, you have an innate responsibility to ensure that that research gets put into action, whether it’s program development, or building capacity.”
Control should start at the very beginning of the research process, when the topic to be studied is decided. “What I’d like to see more of in this whole process is communities generating more of the questions, and having connections to support them in getting the answer,” says Kirlew.
The FNICG is working to improve that. In 2015, it asked First Nations and others including federal departments, research agencies and others, to share their priorities for future research. From that, it created 14 priority areas, including the impacts of Indian Residential Schools and mental health. A recent data symposium from the Chiefs of Ontario also looked for research priorities and highlighted suicide rates, disabilities, respiratory diseases and water quality among other issues.
The last two concepts — of access and possession — address the control of data itself. First Nations must have the ability to see data about their communities, and they also must be involved in decisions over who else has access to it and for what purpose. “The researchers really need to enter into a data access or data sharing agreement with the community, so that the community is in control and knows how that data is going to be used, protected, stored and accessed,” explains McDonald.
In practice, this can be tricky when it comes to health data, an issue that came up recently as ICES began working with the Chiefs of Ontario. Since ICES must physically store identifiable health data itself, it went with a stewardship model. “We have a data governance agreement with the Chiefs of Ontario that covers any data identified as First Nations individuals,” explains Walker, adding that ICES has a similar agreement with the Metis Nation of Ontario. In addition, the Chiefs of Ontario’s data analyst has been seconded to ICES, to help that analyst better understand how to use the large administrative data sets.
Ownership represents a fundamental shift in how the research is done, says Walker. “It’s basically participatory research, but with administrative health data,” she says. “You’re more closely connected to the people who are going to use the research: You visit the community, and you present to the chief and council, and you meet the doctor and the community members. It’s very rewarding.”
Some researchers have bristled at the idea of giving up some control to Indigenous groups about how to interpret the data and even when and how to publish. “Control over the story, what we publish, how we publish — that is all a collaborative process,” says Walker. “Some people are concerned about that, but the communities are in turn concerned about the health system’s bias. You have Indigenous perspectives and Western perspectives, and each one comes with its own biases and assumptions. A lot of what I do is about helping people who have a lot of bias and power recognize their own bias and power.”
Gathering First Nations health data
Going beyond the best practices for individual research projects, there are also challenges around accessing and collecting data in the first place. It can be difficult to identify First Nations people in existing data. ICES linked with the Indian Registry System to create its database. In B.C., the First Nations Health Authority created the First Nations Client File, which has a broader scope, including people who live on and off reserve, and anyone with status who is living in B.C., even if they’re originally from another province.
At a national level, the FNIGC runs the First Nations Regional Health Survey (RHS). That data — which has been collected since 2009 and is held at the centre — helps fill the information gap that existed about the health of First Nations people living on reserves and in northern communities.
It ensures that the data they collect is comparable to other national health surveys. It also develops the survey questions to “reflect the reality in First Nation communities,” she says, including a more holistic approach to analysis that includes social determinants of health, and using strength-based questioning. That’s important because while research in health systems delivery is good at identifying gaps and problems, that can contribute to a sense of members within communities that they’re broken and problematic, rather than helping them identify skills and strengths that can improve their health.
Data on First Nations people who live off the reserves is collected by Statistics Canada’s Aboriginal Peoples Survey. Other data across Canada is collected by CIHI. But working with different agencies – especially combining federal data and provincial data — can be challenging, an issue that comes up again and again in Walker’s work “from the smallest question to the biggest question,” she says.
At the same time, other provincial and regional areas across the country are developing their own ways of using data, from B.C.’s First Nations Health Authority to the First Nations Client Linkage Registry in Nova Scotia. “The capacity for data [collection and use] is happening in each region, and what I envision is getting an approach together and providing funding for something that helps to coordinate all those groups and enables national reporting,” says Walker.
Developing a First Nations Health Quality Council
The Truth and Reconciliation Commission of Canada’s report directly addresses the importance of better tracking indicators in the First Nations community. “We call upon the federal government, in consultation with Aboriginal peoples, to establish measurable goals to identify and close the gaps in health outcomes between Aboriginal and non-Aboriginal communities, and to publish annual progress reports and assess long term trends,” it reads.
So what might that look like? A briefing from HealthCareCAN — written by one of the authors of this article, Alika Lafontaine — suggested a few next steps that could be taken. Among them was the idea, introduced by David Naylor’s 2015 report, that a First Nations Health Quality Council should be created and lead this work.
The Naylor report suggests that a First Nations Health Quality Council should be created as a partnership with First Nations representatives and the federal, provincial and territorial governments. It would both report on quality and safety of medical care and collaborate with the Canadian Institute for Health Information (CIHI) to collect data. It also suggested a similar group created with Inuit representatives.
That idea makes sense, says Kirlew. “We’re in the middle of a quality revolution; the provinces and hospitals have been focused on that for decades. But I am very concerned that that same robustness or appreciation for quality might not be there in the federal health care system on reserves. I always say to my patients, you deserve not just good health care, but excellent health care. And I ask if our system is aiming for excellence, or to a minimum set of standards.”