University practices around data governance often don’t align with Indigenous Peoples’ perspectives on Indigenous data governance principles.
Melissa Shouting (BHSc ’19), a faculty member in the Faculty of Health Sciences, found this misalignment led to Indigenous populations involved in research only gaining access to secondary data sources or being tokenized in the process to “secure” the data for the researcher. The finding came out of the background research conducted for the Sokkinakia’pi Collaborative Project, which is co-led, co-designed and co-managed by the Blood Tribe Department of Health and the University of Lethbridge, and formed the basis of her master’s thesis.
The Sokkinakia’pi Collaborative Project grew out of the health-related Calls to Action from the Truth and Reconciliation Commission. The Blood Tribe Department of Health and ULethbridge partnered to expand health services capacity and delivery on the Blood Reserve.
Shouting began her research with a scoping review of the literature to gain an understanding of how researchers and their respective institutions interpret existing data governance principles when collaborating with Indigenous communities or populations. Typically, when a researcher at a post-secondary institution collects data, the data stays within the institution.
“Within Indigenous data governance in Canada, there are OCAP principles,” says Shouting. “The letters stand for ownership, control, access and possession. I wanted to understand how researchers are implementing these principles within their research projects when working with Indigenous populations or communities.”
The OCAP principles of data governance don’t always line up with policies at post-secondary institutions. So, in practice, Indigenous communities involved in research usually have access to secondary data sources, such as research reports or published articles. In her review, Shouting also looked at research design and found Indigenous communities were typically only involved in the data collection phase.
“There were very few occurrences of including the community from the research planning phase to the dissemination phase; it was mostly just for data collection,” says Shouting. “Even though a lot of researchers are saying that they’re Indigenous led, the reality is that they’re still using Eurocentric methods of data collection and data analysis, which then means the findings don’t truly reflect Indigenous populations.”
With the Sokkinakia’pi Collaborative Project, community members were hired as research assistants to support the project and helped develop data collection tools, such as the focus group discussion prompts and the survey tool, to reflect the community. Community members were involved in the data collection process and will also participate in the data analysis and dissemination process.
“The survey tool is designed to help us understand what the current social determinants of health are for the community,” says Shouting.
She works with a steering committee, which includes community Elders and members, individuals from Blood Tribe Chief and Council and leadership from Blood Tribe Department of Health. As a member of the Kainai Nation herself, Shouting went to the various communities, Moses Lake, Levern, Standoff and Old Agency, to visit with community representatives and helpers who could support the project. From there, she visited each community and hosted community feasts, conducted focus groups and provided information on the survey. This process supported research capacity building within the community to support a community-led framework.
“Within the quantitative data, we’re already identifying what the social determinants of health look like for the community in terms of education, employment, income, social status, social supports, coping skills and healthy behaviours,” she says.
Final reports are due by the end of the year. The project will then focus on understanding the assets within communities that support health. The next step is to identify what’s needed for infrastructure, resources and pathways to education and employment.
In line with OCAP principles, the community maintains full ownership of the research data.
Shouting has completed the requirements for her Master of Science and will convocate next spring.