Addressing systemic barriers and colonial legacies in health research

Tibetha Kemble (Stonechild). Photo supplied.

Tibetha Kemble (Stonechild) is a passionate advocate for Indigenous sovereignty and self-determination. Her transformative work continues to make significant advancements in redressing colonial legacies and systemic exclusion in health and education systems.

She recently completed a PhD in educational policy studies at the University of Alberta. Her dissertation is entitled “Mapping the Experiences and Effects of Colonial Material Deprivation in First Nations Early Childhood Education.”

An accomplished Indigenous leader and academic, Kemble (Stonechild) has held several senior positions in post-secondary education and government while also running her small business, With People Inc., and supporting other Indigenous leaders through yahkikiw Executive Coaching. 

Formerly the director of Indigenous health at the U of A Faculty of Medicine & Dentistry, she is now the project lead of the Indigenous clinical trial unit of Accelerating Clinical Trials (ACT) through the faculty’s clinical trials office.

Indigenous Clinical Trial Research

ACT is a Canada-wide consortium of 11 clinical trials units that supports investigators and industry partners with specialized expertise in designing and executing clinical trials. Its goal is also to improve access to clinical trial research by populations typically excluded, such as Indigenous Peoples and communities.

In 2023, ACT established the Indigenous Health Committee with funding from the Canadian Institutes of Health Research (CIHR) to redress the under-representation of Indigenous Peoples from priority-setting within clinical trial research. The committee is co-chaired by Wayne Clark, Inuk health researcher and executive director of the U of A Wâpanachakos Indigenous Health Program, and Wanda Phillips-Beck, First Nations Health & Social Secretariat and Manitoba’s first Indigenous Research Chair in Nursing. They are supported in leadership by surgeon Melanie Morris who heads the Métis component.

A key part of the committee is the Grandmother’s Council. Deeply rooted in distinctions-based Indigenous traditions and values, the Grandmothers provide guidance and wisdom on protocol by integrating Traditional Knowledge and practices into clinical trial research to enhance the health and well-being of Indigenous Peoples in what is now Canada. 

“We’ve received some early support from the Grandmother’s Council and a strategic plan to advance our work is currently being reviewed by leadership in the faculty,” says Kemble (Stonechild).

Kemble (Stonechild) says the Indigenous Health Committee has made important progress in determining health priorities to be included in future Indigenous-led projects. Her role involves overseeing all activities related to engagement, protocol, design and support for the First Nations, Métis and Inuit components of ACT, while working with Indigenous communities across Canada to determine engagement protocols and guidelines that will inform and shape wise and safe research practices in the future. 

Part of the work will be determining data sovereignty, ownership and stewardship. Normally the funding institution owns published research data, but First Nations-specific data belongs to the individual and the community. “That will be a challenging but unique opportunity to rebalance that settler-colonial idea,” says Kemble (Stonechild).

Kemble (Stonechild) is also preparing to launch a first-of-its-kind Indigenous clinical trials unit to serve as a hub of Indigenous expertise for ACT. 

“There is no specific unit designed to meet the unique needs, perspectives and realities of Indigenous Peoples relative to clinical trial research in the country,” she says. “Clinical trials being identified, led, designed and implemented by and for Indigenous people — that’s quite unique and uplifts and strengthens. It’s about sovereignty and self-determination over our health.” 

Pragmatic Trials Training Program

Kemble (Stonechild) has also been named a future trial leader in the Health Data Research Network Canada Pragmatic Trials Training Program. This two-year program is funded by CIHR and coordinated by Western University’s Schulich School of Medicine & Dentistry. 

Her research, entitled “Rendering Visible: Birth Alerts, Disruptive and Anti-Colonial Interventions for Indigenous Women and Children in Alberta,” aims to address the impacts of birth alerts on Indigenous women and children.

A birth alert occurs when a social worker or health professional flags an expectant parent to hospital staff — without the parent’s consent — because they believe the unborn baby is “at risk.” It can result in the child being taken into government care and disproportionately affects Indigenous women. 

“Despite governments banning birth alerts, Indigenous children continue to be over-apprehended in Alberta, and across the country,” says Kemble (Stonechild). “Because of the invisibility of systemic racism, birth alerts continue to happen — they just happen in different ways now.” 

Kemble (Stonechild) intends to work with Indigenous mothers and health-care providers to design a more holistic system of care to support the mother before, during and after delivery to ensure that moms and babies stay together.

A survivor of the Sixties Scoop, Kemble (Stonechild) says she feels called to do this work. 

“To help me understand my own life a little bit better, to help me understand what happened to my birth mother, to help me understand what continues to happen to thousands of other Indigenous women across this country so that we can render visible all of the things that are happening, then shift the gaze back to the system to say, ‘We understand how this happens. And I won’t, we can’t, let it happen anymore.’”

Why this work is important

Kemble (Stonechild)’s work aligns with the Truth and Reconciliation Commission’s Calls to Action — acknowledging and addressing historical harms from government policies, residential schools and racism — and advocates for equitable health research practices. “When we talk about redressing the past, part of our work is about apologizing for the harms — like past experiments, past clinical trials both inside and outside residential schools,” she says.

“Whatever interventions we design and implement will significantly impact the health and well-being of Indigenous Peoples and therefore have significant value,” Kemble (Stonechild) says, adding that well-being encompasses more than biomedical measures.

“It doesn’t have to be all quantifiable — there are many different and equally important ways to measure well-being and health. It could be about a community feeling more at ease accessing health care, which has longitudinal impacts on future generations.”

Kemble (Stonechild) envisions designing a future training program specifically tailored to Indigenous clinical trials. “The training program would include foundational elements about conducting clinical trial research, while also being responsive to identified criteria determined by distinctions-based Indigenous communities, about how to work safely and respectfully with Indigenous Peoples and communities.”

“I am grateful to my mentors, my leaders, my co-resistors in these spaces, for the honour and the opportunity to support and uplift this work. I do it with great care and responsibility.”