An Indigenous hub for pediatric health research and care in Canada

THE CONTEXT

First Nations, Inuit, and Métis children are at the heart of their communities’ vitality. They carry on resilient cultures, languages, and nations.

However, the hospital care they receive in Canada continues to be marked by significant inequities, which are lingering consequences of medical colonialism and racism toward Indigenous peoples. Age-standardized hospitalization rates are thus 1.3 to 3.8 times higher among Indigenous children than among non-Indigenous children.

Thanks to two grants from the Canadian Institutes of Health Research (CIHR), the team—which includes researchers, clinicians, service providers, Indigenous partners, and an Indigenous parent—studied how Canadian pediatric hospitals welcome and care for Indigenous children and their families. This research was conducted through the Pediatric Inpatient Research Network (PIRN) and the POPCORN network, which brings together all pediatric hospitals and several pediatric research networks across the country.

The findings are clear: a wide variation in the services offered from one facility to another, gaps in data collection and in the recruitment of Indigenous staff, as well as inconsistent practices regarding cultural safety and patient navigation. To address these issues, the team created a community of practice that brought together more than 55 Indigenous and non-Indigenous participants from 12 of Canada’s 16 pediatric hospitals: pediatricians, nurses, patient navigators, social workers, researchers, and managers. Over the course of six meetings, they shared their knowledge on topics such as smudging ceremonies, working with Elders and knowledge keepers, Indigenous perspectives on children’s health, and the Jordan Principle. The members expressed a desire to continue this collaboration.

Another need has emerged. Pediatric research networks are increasing their number of multicenter projects, including those addressing health issues that disproportionately affect Indigenous children, such as bronchiolitis and trauma. Teams must now demonstrate that they are meaningfully engaging Indigenous communities. Over the past year, the team has been invited to contribute to at least two major multi-center CIHR grant applications, one on respiratory syncytial virus (RSV) and the other on pediatric trauma. However, current best practices in research across the various institutions have yet to be systematically documented.

THE PROJECT

This project aims to collaborate with Indigenous partners to create a digital hub dedicated to research, clinical care, and advocacy for First Nations, Inuit, and Métis children in pediatric hospitals across Canada.

Designed for researchers and clinicians at Canada’s 16 pediatric hospitals, the hub will bring together in one place the governance bodies, ethical processes, consent protocols, and best practices specific to research and care for Indigenous children. It will need to adapt to a dual reality: on the one hand, the hundreds of First Nations, Inuit, and Métis communities, each with their own ethical processes and consent requirements; on the other hand, the diversity of research projects, ranging from general pediatric studies involving Indigenous children to studies conducted with specific communities.

The project will unfold in three phases over 24 months. First, the team will conduct 8 to 10 interviews and one or two sharing circles with Indigenous and non-Indigenous researchers to identify what facilitates research, what hinders it, and what is missing: community engagement, governance and data sharing, ethics and consent, and collaborations between institutions. It will also map out relevant structures within each hospital, such as ethics committees, Indigenous health offices, and community liaison officers.

Ensuite, un Cercle consultatif autochtone, composé de chercheurs, de cliniciens, de prestataires de services, d’Aînés et de gardiens du savoir, codéveloppera le carrefour avec l’équipe. La plateforme sera hébergée sur l’infrastructure existante du réseau POPCORN.

Enfin, des cliniciens et des chercheurs de trois à cinq hôpitaux partenaires mettront le carrefour à l’essai, à l’aide d’un questionnaire validé et de tests fondés sur des situations réelles d’utilisation. De nouveaux cercles de partage permettront d’en mesurer les retombées et d’en préparer la suite.

Indigenous principles at the heart of the approach

The project is grounded in frameworks that place governance and Indigenous knowledge at the center: the First Nations’ OCAP® principles (ownership, control, access, and possession), Inuit Qaujimajatuqangit, the Métis’ OCAS principles (ownership, control, access, and stewardship), the Two-Eyed Seeing approach, a distinctions-based approach, and Chapter 9 of the Tri-Council Policy Statement, which provides a framework for research with First Nations, Inuit, and Métis.

THE OBJECTIVES

• Assess the facilitators, gaps, and barriers related to research processes and infrastructure involving Indigenous children in hospital settings;
• In collaboration with an Indigenous Advisory Circle, co-develop and implement a digital hub based on these findings and on knowledge derived from the team’s previous work on care for Indigenous children and families;
• Evaluate the usability, relevance, and impact of the digital hub.

PROJECT ORIGINALITY

This project lays the groundwork for the first national hub for research and knowledge-sharing guided by Indigenous knowledge and perspectives, serving all pediatric hospitals in Canada. It transforms the findings of an environmental scan and a community of practice into a sustainable infrastructure. It will also map research pathways, both for general pediatric studies and for research conducted with First Nations, Inuit, and Métis communities, thereby filling a significant national gap.

POTENTIAL IMPACT ON CHILDREN’S HEALTH

By bringing together governance bodies, ethical processes, consent protocols, and best practices in one place, the hub will reduce delays, prevent duplication of effort, and facilitate the launch of new research and care improvement projects. The relationships forged within the community of practice will evolve into a sustainable network dedicated to ethical and culturally safe research.

In the longer term, the project will foster collaborative and sustainable research programs that benefit First Nations, Inuit, and Métis children and families, and will help address the calls to action of the Truth and Reconciliation Commission of Canada by strengthening cultural safety in pediatric research and care. Finally, it will generate the data, governance model, and partnerships needed to roll out the hub across the country’s 16 pediatric hospitals.

POTENTIAL IMPACT ON STUDENTS TRAINING

A master’s student in public health, epidemiology, or a related field will participate in the first phase of the project. Through the RRPH Trainee Advisory Council, which brings together pediatric residents and fellows from all Canadian pediatric hospitals, two to four trainees will also contribute to the design and dissemination of the hub’s knowledge translation strategies.