Table 1 Guidance for reporting involvement of patients and the public (GRIPP)2-short form

1. Aim: Report the aim of PPI* in the study

This project was unique in that the patient and public partner (PPP) co-lead was the person who initiated the study. This was achieved through a PPP submission to the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance^** in response to an identified gap in writing lay summaries by researchers and PPPs. In addition to the PPP co-lead, we had three other patient partners as full research team members. The aim for integrating these PPPs into the study was to shape the scoping review, support the collection of data that was meaningful to PPPs, provide opportunities for learning about the conduct of knowledge syntheses, integrate PPP perspectives in the completion of a consultation exercise as part of the scoping review, and to ensure the outputs and resources created met the needs and preferences of PPPs

2. Methods: Provide a clear description of the methods used for PPI in the study

We used an integrated Knowledge Translation (iKT) approach to ensure PPPs had the opportunity to participate in all study processes. The iKT approach stresses the equitable involvement of stakeholders in research and ensures the engagement of the primary knowledge users (i.e., PPPs) across all steps of this project, as per their interest. This approach included PPP involvement in identifying the research questions, supporting the writing of the protocol, collecting data, interpreting findings, and developing the final outputs. Key principles were co-created for how our team would collaborate to ensure clear communication, maximize contributions, and provide a safe space for all team members, including PPPs. An infographic, which was regularly discussed at team meetings, was created for each project step to facilitate understanding of the review steps. Monthly team meetings occurred to review project progress and receive feedback. Additional regular meetings took place between the PP and researcher co-lead. To contextualize the scoping review findings, a consultation exercise was conducted in which all PPPs engaged in planning and analysis and one PPP took on a co-lead role during the exercise

3. Study results: Report the results of PPI in the study, including both positive and negative outcomes

PPPs provided valuable feedback on the study protocol including responses to journal reviewers, drafts of the proposal submitted to the research ethics board, the data extraction guide, the detailed plans for the consultation exercise, the scoping review manuscript, and the study lay summary. This was achieved through both written and verbal feedback

Researchers provided training to PPPs to use Covidence (literature review screening software) and were engaged in screening peer-reviewed resources. PPPs were also provided with some samples of grey literature to become familiar with various types of literature and specific processes of screening for each type. One PPP was the second screener and extractor for the review, completing this work for the peer-reviewed and grey literature. All four PPPs were involved in the discussion of scoping review results during team meetings and were directly involved in the analysis phase for the consultation exercise. Subsequently, they discussed the potential impact of the findings on different stakeholders, researchers, and the public. They also suggested different platforms to disseminate the results. PPPs reviewed and edited abstracts submitted to scientific conferences and participated in creating posters and presentations. PPPs provided feedback on the final manuscript

4. Discussion and conclusions: Comment on the extent to which PPI influenced the study overall. Describe positive and negative effects

The PPPs contributed to identifying patient experiences, needs, priorities, and values and conceptualizing the research problem from PPPs’ perspectives. Their involvement added credibility, meaning, and insight to the study and its findings. Their critical perspectives were particularly constructive in discussing the results of the consultation exercise. The PPP co-lead ensured that the research team remained centred on the project purpose and were aware of critical PPP perspectives as they related to lay summaries. PPPs co-designed the consultation exercise and directly engaged in analyses of the sessions

Project progress was at times slowed by the training and informational needs of the PPPs. Having a PPP co-lead was a beneficial aspect of the project and resulted in a thoughtful approach but also required more time in discussion and collaboration. Engaging in a fulsome co-leadership model was at times challenging given the differences in perspectives and the funding model of reimbursing a PPP as an honorarium. This limited time available for true co-leadership and likely reduced its potential impact. Greater effort should have been spent initially to better establish the co-leadership model from the PPP co-lead perspective

5. Reflections/critical perspective: Comment critically on the study, reflecting on the things that went well and those that did not, so others can learn from this experience

The project was a learning experience for all team members. It provided an excellent opportunity for PPPs and researchers to engage in collaborative communication, the development of safe spaces for everyone and learning more about the positive nature of PPP initiated and co-led research

PPPs were able to further their understanding of the research process and researchers were able to further their understanding of PPP perspectives and approaches to PPP engagement, particularly for PPP co-led projects. All team members reported that team processes allowed for reflection on assumptions related to lay summaries

Areas for improvement included having the researcher co-lead be less eager to get the project started and spend more time initially on framing the project together with the PPP co-lead and having more robust engagement of the PPP co-lead for initial steps including search strategy review and protocol development. Efforts were made to include PPP training on every aspect of the review but in the interests of time and review progress, it might have been better to have PPPs prioritize review steps of greatest interest. This could have enhanced these experiences for PPPs. Due to budget limitations, only one PPP had the full experience of study screening and extraction. Different budget considerations might have allowed for additional PPP involvement. A significant learning was to prioritize time initially on expectations of the PPP co-lead model including desired approaches to communication and collaboration