Highlighting the RKC Indigenous Community Engagement Team and its Navigator
Image of members of Pewaseskwan and Indigenous Community Guiding Circle Knowledge Holders
Since RareKids-CAN launched in 2024, the Equity, Diversity, Inclusivity, and Indigeneity (EDI+I) sub-platform has been working to build meaningful relationships, both within RareKids-CAN and with other rare disease organizations, to improve access to clinical trials and treatments for pediatric rare diseases. Their dedication to shaping research in ways that honour community voices and experiences is evident throughout the work of the Indigenous Community Engagement team. Supported by its indigenous Navigator, Michelle Paquette, the team works together under Pewaseskwan, the Indigenous Wellness Research Group, based out of the University of Saskatchewan and led by Drs. Alexandra King and Malcolm King.
Gathering to Work Together
Recently, the Indigenous Community Engagement team has been focused on creating the National Indigenous Community Guiding Circle (NICGC) gathering, Miyo Wâpan – Going Forward in a Good Way. This gathering intends to help inform about the work that they do, such as work in gender equity, with this guiding circle being formed by Knowledge Holders, Elders, and people with lived and living experiences. This hybrid event took place earlier this month and welcomed members of Pewaseskwan, RareKids-CAN, CANTRAIN, and PASSERELLE to come together and honour the beginning of this important, collaborative work with two ceremonies, followed by an opportunity to share priorities and vision for the NICGC to help guide these collaborations and ensure that these priorities reflect community needs and voices.
Strengthening Connections Across the Network
Throughout their work, the Indigenous Community Engagement team has been committed to building and strengthening relationships within their own sub-platform and across the RKC network to align efforts and collaborate effectively. The team emphasizes that their work is never done in isolation but is woven throughout the network and rooted in principles of community. This reflects how they envisioned their work and the emphasis that they bring to the network, ensuring that Indigenous perspectives are embedded throughout all aspects of research and patient engagement.
Looking Ahead: Indigenous Data Sovereignty and Clinical Trials
As the network continues to grow and evolve, the Indigenous Community Engagement team looks forward to aligning their work with the RKC strategic plan in the following areas.
Development of Resources: The team will champion initiatives to improve access to clinical trials and treatments for Indigenous children, adolescents, and their families. Their work includes developing a curated directory of Indigenous-led service providers—such as hospital navigators, graphic designers, and translators—to ensure the culturally appropriate creation of clinical trial materials and enhance engagement with Indigenous communities in pediatric rare disease clinical trials (PRDCTs). They are also working towards creating culturally safe and relevant training resources to guide non-Indigenous clinicians and researchers in engaging meaningfully with Indigenous patients, families, and extended kinship networks. Beyond these initiatives, the team continues to advocate for proper resources to ensure all patients and families—particularly those in remote or distant communities—can access care and treatment in culturally safe spaces. Recognizing that many clinical trials and therapies in the rare disease space may be concentrated in large institutions, the team underscores the importance of innovative, decentralized trial models that allow Indigenous families to receive care closer to home.
Raising Awareness: They are dedicated to exploring the systemic barriers and stigma that delay diagnoses and treatments for Indigenous rare disease patients in an already lengthy process. Through raising awareness and reshaping engagement strategies, the team hopes to continue to change this landscape and improve care and treatment for all Indigenous rare disease patients
Indigenous Data Sovereignty and Governance: In partnership with CANTRAIN and through conducting an environmental scan, the team plans to identify best practices for protecting Indigenous data rights to respect both individual and collective rights around data within clinical research. They will explore how Indigenous data sovereignty leads to trust-building and confidence in the clinicians and researchers conducting clinical trial within Indigenous communities. They’re interested to see how exploring this connection will translate into the clinical trial landscape and position the team as leaders in ethical, community-driven research
Training and Mentorship: The inclusion of Indigenous scholars, children, youth, and family partners remains a core focus at RKC. The team is supporting network initiatives by helping identify Indigenous scholars for our Expertise Database to contribute to protocol optimization and site/investigator identification. A dedicated salary award is also reserved through the Increasing Capacity for Maternal and Paediatric Clinical Trials-IMPaCT training program for an investigator from an underserved community, and the team will play a key role in recruitment. In addition, through the guidance from the NICGC and other team members, they will review network materials to ensure they are culturally safe, inclusive, and appropriate for Indigenous patients, families, communities, and the clinicians and researchers leading clinical trials.
A Collective and Collaborative Future
The Indigenous Community Engagement team looks forward to continuing to work collaboratively across the RareKids-CAN network, to strengthen and build their relationships throughout the network and beyond, and to improve access to clinical trials and treatment for Indigenous rare disease patients through their dedication to inclusivity, cultural safety and accessibility. By focusing on deliverable outcomes that directly improve health and wellness, they are committed to changing the rare disease and clinical trial landscape for Indigenous patients and communities through reducing fear and stigma while strengthening trust and ensuring that all patients and families have equitable access to diagnoses, treatments, and participation in research.
Thank You!
We would like to thank Michelle Paquette, Indigenous Community Navigator with RareKids-CAN and Project Coordinator for Pewaseskwan’s Stamsh Slhanay Llawat II (Women Warrior Healing) research project; Carrielynn Lund, Pewaseskwan Project Coordinator; and Anum Nooruddin, Navigator and Pewaseskwan Research Assistant, for their participation and insights for this article.