The CHILD-BRIGHT Network Patient-Oriented Research (POR) Toolkit is designed to support child health researchers in meaningfully engaging partners with lived and living experience (PWLEs)*, also commonly referred to as patient-partners in other areas, throughout the research process. Grounded in the principles of mutual respect, co-building, support, and inclusivity, the toolkit provides practical guidance on how PWLEs can contribute at different stages of the research cycle. By offering clear explanations and addressing common challenges, this resources equips research teams with the knowledge and tools to foster authentic collaboration with youth, families, and other key partners.

The toolkit is structured using a road sign metaphor to guide users through the key aspects 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 identifying research priorities, co-developing studies, navigating ethics applications, collecting and analyzing data, communicating findings, and evaluating projects. Additionally, the toolkit features a collection of curated resources (road sign #3)–including videos, infographics, and publications–and frequently asked questions (FAQs) to address common questions (road sign #4).

Whether you are new to POR or looking to strengthen your existing approach, this toolkit serves as a practical, easy-to-navigate companion for integrating PWLE engagement into research in a meaningful and effective way.

*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;

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.

See more on CHILD-BRIGHT’s language refresh and terminology use, here.

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

Research leads: Annette Majnemer and Linda Nguyen

POR Toolkit working group: Alix Zerbo, Roberta Cardoso, Yvonne Pelling, Miriam Gonzalez, Marie-Eve Bolduc, Sevinj Askerova, Hana MacDougall, Mathias Castaldo, Connie Putterman, Jessica Hanson, Julie Scorah, and Zachary Boychuck.

Engagement program team: Corinne Lalonde, Heather Muir, and Jenny Gilbert

Communications team: Kate Ortwein and Sunny Yimeng Dong

Website design: Sunny Yimeng Dong

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.

How to cite this toolkit: 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.