Patient and public involvement and engagement in methodology research: process, experiences, and recommendations from the SPIRIT- and CONSORT-Surrogate project
Manyara, Anthony Muchai Stewart, Derek Markham, Sarah Worrall, Andrew Harris, Ray Davies, Philippa Weir, Christopher J Young, Amber E Blazeby, Jane Butcher, Nancy J
Manyara, Anthony Muchai
Stewart, Derek
Markham, Sarah
Worrall, Andrew
Harris, Ray
Davies, Philippa
Weir, Christopher J
Young, Amber E
Blazeby, Jane
Butcher, Nancy J
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Other Contributors
Publication date
2025-12-04
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Abstract
This study looked at how patients and the public can be helpfully included in creating guidelines for reporting medical research. In the past, these research guidelines have been created only by scientists; however, involving patients and the general public is increasingly viewed as helpful for everyone in helping to ground guidelines in reality.The researchers created a detailed plan explaining exactly how people would be involved, particularly in the two main activities: a survey to gather opinions and a meeting to discuss the final decisions on the guidelines.To prepare patients and members of the public, researchers held a workshop attended by 19 people, most of whom then participated in the survey. Four of those who participated in the survey joined a meeting to finalise the guidelines, actively contributing patient viewpoints. These partners became co-authors of the final guidelines and helped create an educational video explaining the guidelines’ importance.The involvement of patients and members of the public was successful because of supportive measures like preparatory workshops. Both researchers and patient partners agreed that the involvement was helpful and improved the final guidelines.Based on their experience, the researchers suggest six practices: involve patients from the beginning; create a clear involvement plan; ensure participation is valuable; provide enough support and create a welcoming environment; regularly gather feedback on the process; and budget well to pay for participants’ time fairly.
Citation
Manyara AM, Stewart D, Markham S, Worrall A, Harris R, Davies P, Weir CJ, Young AE, Blazeby J, Butcher NJ, Bujkiewicz S, Chan AW, Dawoud D, Offringa M, Ouwens M, Collins GS, Ross JS, Taylor RS, Ciani O. Patient and public involvement and engagement in methodology research: process, experiences, and recommendations from the SPIRIT- and CONSORT-Surrogate project. Res Involv Engagem. 2025 Dec 4;11(1):144. doi: 10.1186/s40900-025-00807-y.
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Article