Triangulating patient and public involvement in clinical research: a cross-cohort qualitative study
Ben Hood, Andy Bojke, Catherine Cooper, Lesley Curtis, William Cruickshank, Stephen Searl, Sue Searl, Rona Bojke, Irene Soulsby, Chris Walker, Jaime Amezaga · 2026
Read Triangulating patient and public involvement in clinical research: a cross-cohort qualitative study by Ben Hood, Andy Bojke, Catherine Cooper, Lesley Curtis, William Cruickshank, Stephen Searl, Sue Searl, Rona Bojke, Irene Soulsby, Chris Walker, Jaime Amezaga (2026) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/pmc-13231631.txt.
Description
Ben Hood and colleagues examine in 2026 how patient and public involvement really works inside United Kingdom clinical research. Involving patients is now an ethical expectation, yet most studies hear from only one kind of participant at a time. Forty interviews covered lay contributors, trial sponsors, involvement leads, and ethics committee members.
Five linked themes emerged across the groups, led by a sense that involvement is valued in words but fragile in structure. People described box-ticking exercises, invisible unpaid labor, and late invitations that limit real influence. Goodwill from a few committed individuals carried much of the system. Stronger infrastructure, earlier involvement, and better proof of impact are proposed so contributors shape research rather than decorate it.
Catalog record
| CREATOR | Ben Hood, Andy Bojke, Catherine Cooper, Lesley Curtis, William Cruickshank, Stephen Searl, Sue Searl, Rona Bojke, Irene Soulsby, Chris Walker, Jaime Amezaga |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 55 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |