Table 3 PPI in the development of GRIPP2 using GRIPP 2-SF^a

1: Aim

 Report the aim of the study

To develop international consensus on the key items to report to enhance the quality, transparency, and consistency of the PPI evidence base. To collaboratively involve patients as research partners at all stages in the development of GRIPP2

2: Methods

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

Three patient partners were recruited to the research team to assist at all stages of the development of and consensus process for the GRIPP2 guidelines. They were involved in refining the focus of the research questions, in developing the search strategy, in interpreting results, in discussions identifying the need for development of guidelines, and in selecting the items for the original GRIPP checklist. The patient partners helped recruit participants (n = 60/143) to the Delphi survey through snowballing techniques. They helped pilot the electronic survey for the first phase of the Delphi survey consensus process and helped other patient reps with technical aspects of completing the online survey, hence improving the response rate in each round of the Delphi. They also worked with the researchers to collate comments from each Delphi survey round, to adapt items, and to feed back to the participants for the next Delphi survey round. They checked comprehension of changed items and comments from the lay perspective. The patient partners took part in the consensus workshop, alongside five other patients (n = 8/25 in total) to agree consensus on items not reaching consensus and to adapt wording where items were not clear. The patient partners contributed to edits of the paper and are coauthors.

3: Results

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

PPI contributed to the study in several ways, including:

- Collating initial evidence

- Identifying items for the GRIPP checklist

- Considering the evidence and their wider experience—the patients highlighted the importance of including items referring to the context and processes of PPI, suggesting that this affected the impact that PPI had on research

- The patient partners, along with other patient organisations and charities, recruited nearly half of all participants for the Delphi survey

- The patient partners helped other patients with the technical aspects of completing the online survey, improving the response rate in each Delphi survey round.

- The patient partners checked the comprehension of the changed items and comments from the lay perspective between rounds and were integral to helping the researchers keep to the scheduled time of the Delphi survey

- Throughout the write-up phase for both the results paper and the methods paper the patient partners contributed to the lay sections and contributed to edits of the paper

4: Discussion

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

Patient and public involvement in this study was very effective and influenced important aspects of the study, based on the impacts in section 3. This might have been related to several factors. Firstly the patient partners had received training around research methods in previous studies, and were actively involved in a patient and public involvement group attached to the University of Warwick. In addition, the researchers were experienced at involving patient partners in their research.

The right processes were in place, as the patient partners were involved from the beginning of the study allowing them to help shape the study from the start allowing them to contribute fully to the study. Having the right context, with a collaborative research team, funding to finance their time, and a supportive attitude of their involvement from EQUATOR and other collaborators, also assisted in the positive impact that PPI had on this study. Pre-existing relationships with patient partners and patients who attended the collaborative consensus event provided a vital context for embedded PPI.

However, there were limitations. The methods used to gain consensus had been developed and tested for reliability and validity by EQUATOR in the development of previous guidelines, which limited the possible input from the patient partners in identifying or developing methods to gain consensus on GRIPP2. Furthermore, the time for feedback between Delphi survey rounds was short, and organising times where both researchers and patient partners could meet was difficult. In similar future studies, scheduling of these meetings in advance of the Delphi survey might overcome this limitation.

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 PPI in the study was embedded as far as possible into the methods for developing consensus. While not a formal part of EQUATOR methodology, the aim of active collaboration in an attempt to co-produce knowledge worked well. The key challenge was the timescales required to ensure the Delphi survey was completed with appropriate intervals. If this was repeated, these time scales would require extension. We are aware that this process might have limited the extent to which patient partners were able to identify concepts of importance that sit outside of the traditional research paradigm and so may require further development in the future.