Advancing Clinical Trial Research by Indigenous Peoples, for Indigenous Peoples.
The ACT Indigenous Health Committee was established in May 2023 to support and advance Objective #10 of the ACT Consortium which seeks to
“Improve the process of involving Indigenous Peoples in trials and establish a process to identify Indigenous Health Priorities and interventions for evaluation.”
To achieve this, the ACT Indigenous Health Committee acknowledges that the under-representation of Indigenous peoples and communities in the present context arises from the complex intersection and ongoing legacies of colonialism that have excluded First Nations, Inuit and Metis peoples from priority-setting within clinical trial research.
The ACT Indigenous Health Committee acknowledges in order to meaningfully advance Objective #10 and improve the process of “involving Indigenous Peoples…(and) establish(ing) a process” requires an intentional approach underscored by a commitment and a responsibility to redress the harm and legacies of scientific racism that have eroded and undermined the foundation of trust in the relationship between Indigenous peoples and communities and researchers and research institutions in what is now Canada.
The imperative of the ACT Indigenous Health Committee, in that regard, extends beyond mere symbolic procedural/process improvements towards substantive efforts that resist the tide of western scientific research in several ways, including but not limited to:
Addressing the conflict pertaining to the rights of Indigenous Peoples vis-à-vis data sovereignty and self-determination within a contemporary western scientific and legal framework.
Moving away from clinical trial interventions that reinvigorate the settler-colonial dynamic within research that have sought, almost exclusively, behavioural change among Indigenous populations as opposed to rehabilitation or drug interventions.
Data collection methods and community engagement methodologies that are incongruent with Indigenous epistemologies and that contradict or undermine Indigenous principles, values, and natural laws.
Limited approaches/methods for engaging with First Nation, Inuit, or Métis peoples and communities about their distinct and diverse health priorities/needs within clinical trial research (i.e. a pan-Indigenous approach).
Understood in this way, the work of the ACT Indigenous Health Committee is responsive to the known implications of the exclusion of Indigenous Peoples to medical science broadly and to the ways in which these dominant approaches continue to undervalue and undermine Indigenous epistemology, worldviews, principles, values and rights more narrowly. As Umaefulam, Kleissen, & Barnabe. (2002) state, the “underrepresentation of Indigenous peoples in clinical trials has serious implications for medical science by limiting validity and generalizability of research findings, contributing to inequity in treatment outcomes, and influencing the allocation of resources for services and research.”
The Grandmother's Council is an important part of the Indigenous Component's work and will advise and guide on the necessary components to consider when conducting clinical trials with Indigenous populations. The Grandmother's Council will also advise on wise practices for developing a standardized approach for engagement.
The Elders Advisory Council will advise the IHC on the necessary components for safe and respectful engagement in conducting clinical trials with Indigenous communities. This important work will form the foundation for the development of a distinctions-based Indigenous Clinical Trial Engagement Framework.
Distinctions-based Indigenous community partners will, alongside the Indigenous Health committee, lead in the determination of health priority areas to be included in clinical trial research now and into the future.
Our work intends to identify principles for data sharing agreements (e.g., OCAP) and other RCT guidelines, as well as culturally-safe engagement methods that support improved access to clinical trials and clinical trial research by Indigenous peoples and communities.
The IHC will work with the EAC and Indigenous community-partners to establish distinctions-based cohorts (First Nation, Inuit, and Metis) who will lead and work alongside Indigenous community partners on determining/defining their key health priorities in clinical trial research.
Please contact Dr. Tibetha Kemble, Project Lead (Indigenous), ACT Canada at kemble@ualberta.ca or by phone at 587-590-2693