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. 2023 Nov 8;22(1):234.
doi: 10.1186/s12939-023-02044-9.

Ensuring Indigenous co-leadership in health research: a Can-SOLVE CKD case example

Cathy Woods  1 , Craig Settee  1 , Mary Beaucage  1   2 , Helen Robinson-Settee  1 , Arlene Desjarlais  1 , Evan Adams  3 , Catherine Turner  1   3 , Malcolm King  1   4   5 , Letitia Pokiak  1 , Mary Wilson  1 , Evelyn Voyageur  1 , Chantel Large  1 , Jonathan McGavock  6 , Joanne Kappel  1   7 , Helen Chiu  8 , Tamara Beardy  1   6   9 , Isabelle Flett  1 , James Scholey  1 , Heather Harris  1 , Jocelyn Jones  10 , Latash Maurice Nahanee  1 , Delhia Nahanee  1 ; Can-SOLVE CKD Indigenous Peoples’ Engagement, Research Council (IPERC)
Collaborators, Affiliations

Ensuring Indigenous co-leadership in health research: a Can-SOLVE CKD case example

Cathy Woods et al. Int J Equity Health. .

Abstract

Background: Indigenous people are insightful and informed about their own health and wellness, yet their visions, strengths and knowledge are rarely incorporated into health research. This can lead to subpar engagement or irrelevant research practices, which exacerbates the existing health inequities Indigenous people experience compared to the non-Indigenous population. Data consistently underscores the importance of Indigenous self-determination in research as a means to address health inequities. However, there are few formal methods to support this goal within the existing research context, which is dominated by Western perspectives.

Main text: Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) is a patient-oriented research network in Canada that recognizes the need to create the space to facilitate Indigenous self-determination in research. Indigenous members of the network therefore created and evolved a unique group, called the Indigenous Peoples' Engagement and Research Council (IPERC). IPERC plays a critical role in informing Can-SOLVE CKD research priorities, as well as creating tools to support Indigenous-specific research and engagement. This approach ensures that Indigenous voices and knowledge are critical threads within the fabric of the network's operations and research projects. Here, we describe the methods taken to create a council such as IPERC, and provide examples of initiatives by the council that aim to increase Indigenous representation, participation and partnership in research. We share lessons learned on what factors contribute to the success of IPERC, which could be valuable for other organizations interested in creating Indigenous-led research councils.

Conclusion: Indigenous self-determination in research is critical for addressing health inequities. Here, we present a unique model, led by a council of diverse Indigenous people, which could help reduce health equities and lead to a better era of research for everyone.

Keywords: Health equity; Indigenous health; Kidney disease; Research; Self-determination.

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Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
IPERC at Can-SOLVE CKD’s annual meeting in 2023
Fig. 2
Fig. 2
The five stages of forming and sustaining IPERC include: building relationships, consulting with Indigenous scholars and Knowledge Keepers, setting priorities and decision-making processes, strengthening relationships and using guiding principles, such as the IPERC terms of reference and Truth and Reconciliation Calls to Action
See this image and copyright information in PMC

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Publication types

Grants and funding