Patient and public involvement (PPI) in UK surgical trials: a survey and focus groups with stakeholders to identify practices, views, and experiences.
Attitude of Health Personnel
Clinical Trials as Topic
/ methods
Focus Groups
Health Knowledge, Attitudes, Practice
Humans
Patient Selection
Public Opinion
Research Design
Research Personnel
/ psychology
Research Subjects
/ psychology
Sample Size
Stakeholder Participation
/ psychology
Surgical Procedures, Operative
/ adverse effects
Surveys and Questionnaires
Treatment Outcome
United Kingdom
Clinical trial
Focus group
Patient and public involvement (PPI)
Surgery
Survey
Journal
Trials
ISSN: 1745-6215
Titre abrégé: Trials
Pays: England
ID NLM: 101263253
Informations de publication
Date de publication:
11 Feb 2019
11 Feb 2019
Historique:
received:
30
08
2018
accepted:
07
01
2019
entrez:
13
2
2019
pubmed:
13
2
2019
medline:
14
6
2019
Statut:
epublish
Résumé
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. 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. 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. 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.
Sections du résumé
BACKGROUND AND AIMS
OBJECTIVE
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
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
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
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.
Identifiants
pubmed: 30744684
doi: 10.1186/s13063-019-3183-0
pii: 10.1186/s13063-019-3183-0
pmc: PMC6371592
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
119Subventions
Organisme : Medical Research Council
ID : MR/L004933/2
Pays : United Kingdom
Organisme : Chief Scientist Office
ID : HSRU1
Pays : United Kingdom
Organisme : National Institute for Health Research (NIHR) Oxford Biomedical Research Centre (BRC)
ID : NIHR-BRC-1215-20008
Organisme : Medical Research Council (MRC) Network of Hubs for Trials Methodology Research
ID : MR/L004933/1-N66
Organisme : Medical Research Council
ID : MR/L004933/1
Pays : United Kingdom
Organisme : Chief Scientist Office
ID : HSRU2
Pays : United Kingdom
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