Skip to main content

Patient and public involvement (PPI) in UK surgical trials: a survey and focus groups with stakeholders to identify practices, views, and experiences

Crocker, Joanna C., Pratt-Boyden, Keira, Hislop, Jenny, Rees, Sian, Locock, Louise, Olszowski, Sophie, Chant, Alan, Treweek, Shaun, Cook, Jonathan A., Woolfall, Kerry, and others. (2019) Patient and public involvement (PPI) in UK surgical trials: a survey and focus groups with stakeholders to identify practices, views, and experiences. Trials, 20 (119). ISSN 1745-6215. (doi:10.1186/s13063-019-3183-0)

Abstract

Background and aims Historically, patient and public involvement (PPI) in the design and conduct of surgical trials has been absent or minimal, but it is now routinely recommended and even required by some research funders. We aimed to identify and describe current PPI practice in surgical trials in the United Kingdom, and to explore the views and experiences of surgical trial staff and patient or public contributors in relation to these practices. This was part of a larger study to inform development of a robust PPI intervention aimed at improving recruitment and retention in surgical trials. Methods Our study had two stages: 1) an online survey to identify current PPI practice in active UK-led, adult surgical trials; and 2) focus groups and interviews with key stakeholders (surgical trial investigators, administrators, and patient or public contributors) to explore their views and experiences of PPI. Results Of 129 eligible surgical trial teams identified, 71 (55%) took part in the survey. In addition, 54 stakeholders subsequently took part in focus groups or interviews. Sixty-five (92%) survey respondents reported some kind of PPI, most commonly at the design and dissemination stages and in oversight or advisory roles. The single most common PPI activity was developing participant information sheets (72%). Participants reported mixed practice and views on a variety of issues including the involvement of patients versus lay members of the public, recruitment methods, use of role descriptions and payment for the time of PPI contributors. They suggested some solutions, including the use of written role descriptions and databases of potential PPI contributors to aid recruitment. Conclusions UK surgical trials involve patients and members of the public in a variety of different ways, most commonly at the beginning and end of the trial lifecycle and in oversight or advisory roles. These are not without challenges and there remain uncertainties about who best to involve, why, and how. Future research should aim to address these issues.

Item Type: Article
DOI/Identification number: 10.1186/s13063-019-3183-0
Uncontrolled keywords: Patient and public involvement (PPI), Surgery, Survey, Focus group, Clinical trial
Divisions: Faculties > Social Sciences > School of Anthropology and Conservation
Depositing User: K.Z. Pratt-Boyden
Date Deposited: 01 Mar 2019 15:11 UTC
Last Modified: 03 Jun 2019 09:30 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/72817 (The current URI for this page, for reference purposes)
  • Depositors only (login required):

Downloads

Downloads per month over past year