Table 4 Report of patient involvement in this systematic review and recommendations project (GRIPP2 Short Form)

1: Aim

Report the aim of PPI in the study

• To collaborate with patients as authors on a systematic review and, based on that review, propose evidence-based recommendations to help other authors (patient and non-patient authors) work together on publications.

• To develop a tool, which could be shared with others, to help patient and non-patient authors evaluate their experiences of working together on publications.

2: Methods

Provide a clear description of the methods used for PPI in the study

• Three patient partners were invited to join the research team at the study concept stage. They contributed to the development of the protocol for the systematic review, participated in author meetings, provided feedback on presentations (slide and poster presentations made to European and North American conferences) and manuscript drafts, co-created the plain language summary of the publication and contributed to the development of the Patient Authorship Experience tool.

3: Study results

Outcomes—Report the results of PPI in the study, including both positive and negative outcomes

• Positive: The patient partners validated that this project would address an important and unmet need, which justified the initiation of the project. Their early and ongoing contributions provided ‘real world’ insights on the value of patient author involvement (e.g. they raised important points that non-patient authors did not). They provided candid comments and constructive criticism, both of which guided and strengthened the project, and they responded to requests for input, even under tight timelines and during holiday periods. Non-patient authors gained personal confidence and professional satisfaction that they were working on a project that would help other teams involve patient authors, ethically and effectively. They also obtained new knowledge and understanding about the complexities of academic publishing.

• Negative: Additional time was required to develop new tools (e.g. plain language authorship guidelines, authorship agreements, Patient Authorship Experience tool) to ensure patient authors knew their rights and responsibilities, and to help ensure all team members could share their views and learn from this experience.

4: Discussion and conclusions

Outcomes—Comment on the extent to which PPI influenced the study overall. Describe positive and negative effects

• Our patient partners had a critical influence on this project – if they did not see the need for it, then it would not have started. Their passionate belief that patients can and should be authors of publications, not ‘just’ contributors or readers, inspired the whole team. At the outset of the project, however, we had minimal guidance that was specifically relevant to working with patients as authors. We relied on general ‘PPI’ guidance documents, which were helpful, but not as specific as we would have liked.

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

• One early issue research teams must address when wanting to involve patients is knowing which patients to invite and then establishing a culture that facilitates early and ongoing contributions. It is clear that if patients are to become authors, not all of them will already possess the skills set needed. For this project, we were in a fortunate position in that we knew patients who were keen to join the project early. Further, these patients were confident and passionate, and they understood that their expertise was valued. These elements contributed to a culture of openness, inclusiveness and efficiency.

• There is recognition among our patient colleagues that if patients wish to become authors, then they will need to meet authorship criteria, that is, play a more substantial role than sense-checking or proofreading (important though these processes are). Inexperience with authorship may create grey areas early on for some patient (co-)authors.

• On reflection, we did make some assumptions (e.g. logistical/technical assumptions about the ‘ease’ of joining WebEx calls; awareness of publication timelines/processes) that were unwarranted and we have learned how to address these. As we embarked on this project without the benefit of the 21 evidence-based recommendations that we have now proposed, we envisage that future projects will be enhanced by our ability to follow these recommendations.