Table 1 Blueprint for meaningful Patient and Public Involvement (PPI) in reporting guideline development

Project launch

1. Include experienced patient partner(s) on the steering committee: Invite the patient partner(s) to design and (co-) lead the PPI component to mitigate power imbalances and ensure relevance of project to the end-users

2. Plan the PPI component: Decide on (a) the number of patient and public members to involve, (b) how to recruit them, (c) when and how to involve them in the project, and (d) how to evaluate the PPI component of the project with both patients and public members, and with the research team

3. Allocate budget for compensation: Compensate patients and public members and the patient partner(s) for their time and contributions to various project stages in accordance with (inter)national guidelines, factoring in preparation time

Delphi study preparation

4. Deliver onboarding session: Review the project objectives and methods, essential concepts, why PPI is important, and be clear on the roles and expectations of patients and public members, and what patients and public members can expect in return. Ask the project team to join the first 10 min to introduce themselves and get to know the patients and public members. Allow time for questions during and after the session

5. Draft documents with reporting item information and/or glossaries: Provide background information for each reporting item and explain important concepts; pilot materials with patient partner(s); include background documents and glossaries in the Delphi survey; update this information after each Delphi round

6. Pilot Delphi survey with patient partner(s): Ask patient partner(s) to test Delphi surveys to ensure clarity on the objectives, methods, instructions, and wording

Delphi study

7. Set a timeframe: Provide an estimate of the time needed to complete the Delphi survey and reassure patients and public members that it is normal if it takes longer or shorter; highlight the possibility of completing the survey progressively in more than one sitting

8. Offer the option not to vote: Include a ‘not my expertise’ option and emphasize in the instructions that it is okay to select this option

9. Present patients and public members’ responses as separate group: Highlight responses of patients and public members if different from those of other stakeholders

Finalization

10. Evaluate with patients and public members: Besides planned evaluation methods, ask patients and public members if they have additional reflections on their involvement, and how they want to share their feedback

11. Identify subsequent activities for patient and public input: Be flexible and offer patients and public members opportunities to engage in subsequent project activities, even if PPI in subsequent stages was not planned for from the start; establish what is needed for meaningful involvement

12. Feedback patients and public members’ impact on deliverables: Report back on how the project deliverables have changed or developed because of their contributions

Throughout the project

13. Share detailed ‘pre-work’ and information: Ensure patient partner(s) co-writes or reviews all information and documents that will be sent to patients and public members

14. Remain flexible in methods and process: Listen to the needs and wishes of patients and public members; remain flexible and willing to adjust methods and process as the project evolves

15. Celebrate the mutual learning experience: Create an atmosphere of reciprocity, encouraging researchers and patients and public members to learn from one another, and offer feedback at each project stage, underscoring that all contributions are valuable

16. Prospectively capture the impact of PPI at each stage: Outline in a separate record the tangible and measurable changes stemming from PPI input during each stage of the project in real-time; disseminate/publish these changes in a knowledge translation piece

Reporting the project

17. Use specific reporting standards to report on PPI: Adhere to the GRIPP2 [12] reporting guideline to transparently and comprehensively account for PPI