Solutions for Kids in Pain: Embedding and actioning patient partnership in a national knowledge mobilization network

Patient engagement is now often expected or required by funders for research projects, initiatives, or networks. Solutions for Kids in Pain (SKIP) is a national knowledge mobilization network in Canada that is on a mission to mobilize evidence-based solutions in children’s pain through coordination and collaboration. SKIP began as a Networks of Centres of Excellence-Knowledge Mobilization (NCE-KM) network from 2019 to 2024 and continues as a university-based centre. SKIP was built on a foundation of engaging with patients (children and youth) and caregivers (parents) primarily guided by the Patients Included™ charter. This paper shares SKIP’s leading approach to patient partnership during its time as a NCE-KM network. As required by its NCE funding, SKIP was hosted by an academic institution (Dalhousie University) and co-led by a knowledge user partner (Children’s Healthcare Canada), with six hubs across Canada. Here, we demonstrate how SKIP integrated patient partners through its governance, management, committees, and KM activities. We also discuss patient partnership resources developed by SKIP to support its implementation of quality patient partnership practices. Three case examples show in detail how SKIP tailored and evolved its patient partnership approach to specific projects and context. These examples include SKIP’s Patient and Caregiver Advisory Committee, a national Youth in Pain project, and integrating patient partners in the co-development of Canada’s first national health standard for Pediatric Pain Management. Each case demonstrates foundational principles to SKIP’s patient partnership including providing compensation and efforts to create safe and inclusive spaces. SKIP’s commitment to patient partnership is actioned through integrating patient partners throughout all aspects of its work. We share insights gained from SKIP’s patient partnership activities during its time as an NCE-KM network, including developed resources and practices. We encourage others to adopt and adapt our learnings and resources for their own work. As SKIP’s NCE-KM funding and structure ends and the organization continues as a university-based centre, SKIP remains committed to developing and sharing leading patient partnership practices. Patient engagement is now often expected in research projects, initiatives, or networks. Solutions for Kids in Pain (SKIP) is a network in Canada whose purpose is to mobilize research findings into the hands of people who can use and benefit from it. SKIP’s first five years from 2019 to 2024 were as a Network of Centres of Excellence-Knowledge Mobilization (NCE-KM) network. Although SKIP continues as a university-based centre, we are taking this opportunity as the NCE-KM funding and structure end to share SKIP’s leading approach to patient partnership. We want others involved in research and knowledge mobilization activities, projects, and initiatives to use and benefit from what SKIP has learned. From its start, SKIP engaged with patients (children and youth) and caregivers to develop its mission and vision and build a partnership approach based on the Patients Included™ charter. Patient partners were included throughout SKIP’s governance, management and committees, and in all of its activities. SKIP’s foundational patient partnership principles include providing compensation, covering expenses, and creating a safe space, among others. We share three key examples of patient partnership during SKIP’s time as an NCE-KM that highlight how partnership was tailored, what resources were created, and support structures in place, including: (1) SKIP’s Patient and Caregiver Advisory Committee, (2) the Youth in Pain project, and (3) the national standard for Pediatric Pain Management. Dedicated staff, organizational capacity, and resources are required to integrate quality patient partnerships throughout an organization. Partnerships require ongoing commitments to remain positive, impactful, and sustainable.

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