Table 1 Examples of READYorNot™ BBD Project subgroup activities

Technical support

To co-create a series of videos to introduce the MyREADY Transition™ BBD App to RCT participants and to describe how to use features of the App for the Technical support website

Reviewed the video scripts, co-created the storyboards and visuals, and provided narration

Research video series

To co-create a series of short videos as an integrated knowledge translation tool to explain research in youth-friendly language, with the READYorNot™ Brain-Based Disabilities Project as an example of an RCT

Provided feedback for the video scripts, co-created the storyboards and visual, and provided narration

E-learning modules

E-learning modules were developed to train and test fidelity of study procedures among project staff at each project site

Co-developed one of the e-learning modules to explain about the importance of patient and family engagement in research, providing feedback on the content and an audio-recording to incorporate into the module

Co-presentations at conferences

PFAC members were invited to co-present at several conferences [32,33,34]

Brainstormed ideas, provided feedback on abstract submissions, scripted content, provided suggestions for the visuals of the presentation, co-presented live or via pre-recording, answered questions from the audience

Website of resources for youth who were not eligible to participate in the study

A website was developed to:

 Thank youth and families for their interest in the READYorNot™ Brain-Based Disabilities Study;

 Share information about the possible reasons that youth and families were not eligible to participate in the study;

 Provide resources for youth who were not eligible to participate in the study, including resources to other childhood disability research studies, information about the transition from pediatric to adult healthcare, as well as apps and health technology

Reviewed and provided feedback on the language of content and layout of the website, as well as shared potential resources for youth and families

Co-development of an advocacy and policy planning perspective paper

(1) A literature review of existing legislation surrounding the age of transfer in the 4 regions of our trial; (2) Development of patient vignettes to facilitate a dialogue event—with the goal to highlight gaps in the current landscape and to develop recommendations for a future state in terms of transition from pediatric to adult healthcare; and (3) Development of an advocacy and policy planning perspective paper to serve as a stepping stone for improving transition experience for youth with BBD in Canada [30]

Provided significant input in the planning and organization of the dialogue, co-hosted and helped to facilitate breakout room sessions. Shared relevant and real-life examples to help inform the development of a set of patient vignettes and additional prompting questions. Ongoing work to co-author a paper