Table 1 Guidance for reporting involvement of patients and the public (GRIPP2) reporting checklist for lived experience engagement in research [7]
Section and topic | Description |
|---|---|
1: Aim | This knowledge mobilization project aimed to garner the feedback of people with lived experience (PWLE), including family members, by holding events in which PWLE were engaged at all stages. |
2: Methods | Project planning and funding acquisition occurred with a PWLE advisory group, with two PWLE as co-applicants for funding. One PWLE co-facilitated the events. A patient engagement in research coordinator with personal lived experience contributed to the development and facilitation of the event. A family engagement in research coordinator, with expertise in research engagement and family partner experience, further contributed to event development and facilitation. The results were brought back to the PWLE advisory group for discussion and brainstorming about next steps. One person in a PWLE role is co-author of this report, alongside team members with multiple perspectives, including research and lived experience roles. |
3: Study results | The project plan was developed in a manner that resonated with PWLE. The event recruitment and presentation materials were co-developed with PWLE, for clear objectives and presentations. An engaging facilitation style was utilized, through PWLE co-facilitation. PWLE feedback acquired during the events was synthesized together with feedback from people bringing other perspectives. The post-event reflections of PWLE were integrated into the next steps for this line of work. |
4: Discussion and conclusions | PWLE engagement shaped all aspects of the project, from the development of the initial idea and funding acquisition process to the final reporting. This encompassed deliberative and consultative engagement. The results and interpretations represent the perspectives of PWLE, together with those of other relevant partners with whom they work in engagement contexts. |
5: Reflections/critical perspective | This project was guided by lived experience at all levels of planning, execution, and completion, which was pivotal to the project’s success. |