Patient and Public Involvement (PPI) in outcome selection in breast cancer and nephrology trials

Ciara Buckley, Shaun Treweek, Lynn Laidlaw, Frances Shiely* (Corresponding Author)

*Corresponding author for this work

Research output: Contribution to journalLetterpeer-review

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We recently reported that according to patients and healthcare professionals in breast cancer and nephrology trials, teams conducting the trials got their choice of primary outcome wrong (72% of the time) more often than they got it right (28% of the time). A Patient and Public Involvement (PPI) representative, co-author of this letter, asked (on Twitter) whether PPI contributors had been involved in the design of the original trials and by extension the outcome selection. The purpose of this study was to answer this question.

Original languageEnglish
Article number93
Number of pages5
Issue number1
Early online date7 Feb 2023
Publication statusPublished - 7 Feb 2023

Bibliographical note

We would like to acknowledge our PPI colleagues on Twitter who read and commented on our work, helping bring the importance of PPI in clinical trials to the fore.

There was no direct funding received for this research. The HRB CRF-C at UCC facilitated the placement of an undergraduate BSc Public Health Sciences student, CB, who led this study under supervision. The HRB Clinical Research Facility receives core funding from the Health Research Board, Ireland, and matched funding from University College Cork. The Health Services Research Unit, University of Aberdeen, receives core funding from the Chief Scientist Office of the Scottish Government Health Directorates.


  • Trial methodology
  • methodology
  • Clinical trials
  • Patient and Public Involvement/PPI


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