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

Ciara Buckley; Shaun Treweek; Lynn Laidlaw; Frances Shiely

doi:10.1186/s13063-022-06980-9

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

Trials. 2023 Feb 7;24(1):93. doi: 10.1186/s13063-022-06980-9.

Authors

Ciara Buckley^{1

2

3}, Shaun Treweek⁴, Lynn Laidlaw⁵, Frances Shiely^{6

7

8}

Affiliations

¹ Trials Research and Methodologies Unit, HRB Clinical Research Facility, University College Cork, Cork, Ireland.
² School of Public Health, University College Cork, Cork, Ireland.
³ HRB Trials Methodology Research Network (TMRN), University College Cork, Cork, Ireland.
⁴ Health Services Research Unit, University of Aberdeen, Aberdeen, UK.
⁵ Patient and Public Contributor, Health Service Research Unit, Aberdeen, UK.
⁶ Trials Research and Methodologies Unit, HRB Clinical Research Facility, University College Cork, Cork, Ireland. f.shiely@ucc.ie.
⁷ School of Public Health, University College Cork, Cork, Ireland. f.shiely@ucc.ie.
⁸ HRB Trials Methodology Research Network (TMRN), University College Cork, Cork, Ireland. f.shiely@ucc.ie.

Abstract

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.

Keywords: Clinical trials; Outcomes; Patient and public involvement/PPI; Trial methodology.

Publication types

Letter

MeSH terms

Breast Neoplasms* / therapy
Female
Health Personnel
Humans
Nephrology*
Patient Participation

Grants and funding

HSRU1/CSO_/Chief Scientist Office/United Kingdom