The CHILD-BRIGHT Network Patient-Oriented Research (POR) Toolkit provides practical guidance for child health researchers on meaningfully engaging partners with lived and living experience (PWLEs)* throughout the research cycle. By bringing together best practices in POR, offering clear explanations and addressing common challenges, this resource equips research teams with the knowledge and tools to foster authentic collaboration with youth, families, and other key partners.

The toolkit uses road signs to guide users through each stage of POR. It begins with an overview of POR (road sign #1), followed by detailed steps on how to involve PWLEs (road sign #2) in research. The toolkit features a collection of curated resources (road sign #3), and frequently asked questions to address common questions (road sign #4).

*At the CHILD-BRIGHT Network, “PWLEs” is an overarching term referring to research partners who are either:

1. A youth or former pediatric patient research partner with lived and living experience with a brain-based disability, or

2. The parent, caregiver, or family member research partner of a child(ren) or youth with lived and living experience with a brain-based developmental disability.

Learn more about CHILD-BRIGHT’s language and terminology use.

The POR Toolkit was developed by the CHILD-BRIGHT Network, which is supported by the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR), and 15 generous funding partners from across Canada.

We thank Passerelle, the National Hub in Capacity Development for Patient-Oriented Research, for their support of the POR Toolkit.

Research leads: Annette Majnemer and Linda Nguyen

Working group: Alix Zerbo, Roberta Cardoso, Yvonne Pelling, Miriam Gonzalez, Marie-Eve Bolduc, Sevinj Asgarova, Hana MacDougall, Mathias Castaldo, Connie Putterman, Jessica Hanson, Julie Scorah, Zachary Boychuck, Corinne Lalonde, Heather Muir, and Jenny Gilbert. Many thanks to all former working group members.

Communications team: Jacqueline Di Bartolomeo, Kate Ortwein and Sunny Yimeng Dong

Website design: Sunny Yimeng Dong and Jenny Gilbert

Acknowledgements: We gratefully acknowledge the many partners with lived/living experience and CHILD-BRIGHT Network members who contributed their insights to co-create this resource. Special thanks to Sharon McCarry for her early work and participation on this project. 

CHILD-BRIGHT Network; Majnemer, A., Nguyen, L., and the POR Toolkit Working Group. (2025). Patient-Oriented Research (POR) Toolkit. www.child-bright.ca/por-toolkit

© 2025 CHILD-BRIGHT Network. All rights reserved.

For permission requests or any questions, please contact engagement@child-bright.ca.