Research‐ and health‐related youth advisory groups in Canada: An environmental scan with stakeholder interviews

Abstract

Background Engaging youth throughout the research process improves research quality and outcomes. Youth advisory groups provide one way for youth to express their opinions on relevant issues. Objective This study aimed to identify research‐ and health‐related youth advisory groups (‘groups’) in Canada and understand the best practices of these groups. Methods Google searches and supplementary methods were used to identify relevant groups in Canada. Group information was extracted from websites or through interviews with key informants. Results We identified 40 groups. Groups were commonly part of a hospital/healthcare facility, nonprofit/health organization or research group. The majority focused on a specific content area, most commonly, mental health. Over half the groups advised on health services. Members' ages ranged from 9 to 35 years. The number of members ranged from 5 to 130. Interviews (n = 12) identified seven categories relating to group practices: (a) group purpose/objectives, (b) group development, (c) group operations, (d) group structure, (e) adult involvement, (f) membership and recruitment and (g) group access. Challenges and facilitators to the success of groups were described within the following themes: (a) retaining engagement, (b) creating a safe environment and (c) putting youth in positions of influence. Advice and recommendations were provided regarding the development of a new group. Conclusion This study provides a comprehensive overview of research‐ and health‐related youth advisory groups in Canada. This information can be used to identify groups that stakeholders could access as well as inform the development of a new group. Patient or Public Contribution Youth advisory group representatives were interviewed as part of the study.

Refining a capability development framework for building successful consumer and staff partnerships in healthcare quality improvement: A coproduced eDelphi study

“…The key contribution of consumers in facilitating vital external connections between communities and health services 35 is also consistent with the framework. Additionally, it supports amplifying the voices of consumers through capacity building to cochair and lead partnerships 12,32,38 . This also concurs with a call for health professionals to be allies who support and facilitate consumer leadership rather than speaking on consumers' behalf, or directing how consumers engage 39 .…”

“…Additionally, it supports amplifying the voices of consumers through capacity building to cochair and lead partnerships. 12,32,38 This also concurs with a call for health professionals to be allies who support and facilitate consumer leadership rather than speaking on consumers' behalf, or directing how consumers engage. 39 Similarly, effective CCI is reliant on the capability to create a safe environment where there is motivation to recognize and mitigate power imbalances so that decision making is collaborative.…”

“…Consumer renumeration was highlighted by some panel members and the Research Advisory Group as critical to successful implementation and is supported by some literature 12,32 . However, nonmonetary recognition may be just as important 24,38 …”

“…Furthermore, no people under 27 years of age participated which was an issue given that empowering youth perspectives in QI is essential. 38 Additionally, only participants from high‐income countries were involved. Of interest, World Health Organization guidelines regarding CCI in healthcare QI do not specify different strategies according to country income, 1 making this worthy of further research.…”

“…Further research regarding applicably to indigenous cultures is required as only two people with an Australian Aboriginal heritage were included, one in the Research Advisory Group and one on the panel. Furthermore, no people under 27 years of age participated which was an issue given that empowering youth perspectives in QI is essential 38 . Additionally, only participants from high‐income countries were involved.…”