Table 1.

Patient Engagement (PE) quality criteria summary and description

PE quality criterion*	Brief description and rationale
1. Shared purpose	Brief description: Shared purpose refers to the importance of all stakeholders agreeing on the project’s aims and outcomes before starting the project
	Rationale: Early involvement is a key factor for the quality of the process and includes the consideration of all perspectives in the early phase of planning
2. Respect and accessibility	Brief description: Respect and accessibility refer to (1) respecting each other and respectful interactions within the project to be established among partners, and (2) openness to and inclusion of individuals and communities (to the project) without discrimination
	Rationale: A key quality aspect is the importance of securing a supportive culture that reflects that all stakeholders acknowledge the patients’ perspective (at any age) as equally important to that of other professional or authoritative stakeholders. Practical steps must be taken to ensure access for all
3. Representativeness of stakeholders	Brief description: Representativeness of stakeholders refers to the mix of people involved, which should reflect the needs of the project and the interests of those who may benefit from project outputs
	Rationale: Ensuring optimal representativeness is demanding but essential for any PE activity and involves careful consideration of the selection of patient representatives. For example, appointed patient representatives in committees may often be particularly resourceful relating to their disease and treatment, and it becomes important to ensure perspectives of less resourceful or vocal patients are considered
4. Roles and responsibilities	Brief description: Roles and responsibilities refer to the documentation of agreed, and ideally co-created, roles and responsibilities, indicating that all aspects of project needs will be established upfront and revisited regularly
	Rationale: Clarity on roles and responsibilities of all partners is essential for the implementation of equitable working practices that ensure PE opinions and expertise are respected and incorporated, where possible, into PE projects. It is understood that not all feedback was given by young people and families can be incorporated into the end product due to legal limitations
5. Capacity and capability for engagement	Brief description: Capacity and capability for engagement refer to (1) capacity as having relevant and dedicated resources from all stakeholders and (2) capabilities for all stakeholders to enable meaningful engagement
	Rationale: It is essential that everyone has sufficient knowledge and skills to contribute effectively. These skills include the professionals having sufficient PE knowledge and skills, as well as patients having sufficient trials knowledge
6. Transparency in communication and documentation	Brief description: Transparency in communication and documentation refers to the establishment of a communications plan and ongoing project documentation that can be shared with stakeholders. Communication among stakeholders must be open, honest, and complete
	Rationale: Transparent communication throughout the project, both internally and externally, is essential to ensure the credibility of the process and findings. Publication of protocols and results of all trials are increasingly recognized as essential for the effective and ethical evaluation of clinical products
7. Continuity and sustainability	Brief description: Continuity and sustainability refers to the smooth progression of the project and efforts to maintain relationships with stakeholders beyond a single project
	Rationale: Involvement of patients throughout the process as much as feasible, including aspects such as evaluation, dissemination, and implementation can be very beneficial for the quality of the process. Additionally, ongoing commitment to PE and the development of long-term relationships will enhance the quality of outputs. Also, the long-standing relationships that iCAN and YPAGs have with their children and young people beyond a specific activity facilitate many aspects of all engagements