Patient and public involvement in numerical aspects of trials (PoINT): exploring patient and public partners experiences and identifying stakeholder priorities

Beatriz Goulao; Hanne Bruhn; Marion Campbell; Craig Ramsay; Katie Gillies

doi:10.1186/s13063-021-05451-x

Patient and public involvement in numerical aspects of trials (PoINT): exploring patient and public partners experiences and identifying stakeholder priorities

Beatriz Goulao^* (Corresponding Author), Hanne Bruhn, Marion Campbell, Craig Ramsay, Katie Gillies

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

10 Citations (Scopus)

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Abstract

Patient and public involvement is increasingly common in trials, but its quality remains variable in a lot of settings. Many key decisions in trials involve numbers, but patients are rarely involved in those discussions. We aimed to understand patient and public partners’ experiences and opinions regarding their involvement in numerical aspects of research and discuss and identify priorities, according to multiple stakeholders, around the most important numerical aspects in trials to involve patients and the public in.

Original language	English
Article number	499
Number of pages	12
Journal	Trials
Volume	22
DOIs	https://doi.org/10.1186/s13063-021-05451-x
Publication status	Published - 28 Jul 2021

Bibliographical note

The first author was supported to develop this research by the Wellcome Trust – Institutional Strategic Support Fund at the University of Aberdeen.

Acknowledgements
We thank our focus group participants and experts attending the online
priority setting meeting for their valuable input. We would like to thank
PoINT’s patient partner, Richard Caie, for his support preparing the materials
used in the priority setting meeting and his input on the design of the
project. We would like to thank Dr Dwayne Boyers for his input on
opportunities for PPI in health economics in trials and Dr Rumana Newlands
for her support in the conduct of one of the focus groups. We would like to
thank Paul Manson for his input in the search strategy used in our
systematic review. The project meetings could not have been conducted
without the support of our external facilitator, Katherine Cowan, and our
administrative support, Caroline Whiting, Beverly Smith and Caroline Burnett.

Authors’ contributions
BG, MC, KG and CR conceptualised the study. BG designed the topic guide
that was reviewed by HB. BG and HB collected and analysed the data. All
authors contributed to the interpretation of results. BG wrote the first draft
of the manuscript. All authors commented on the manuscript and approve
its submitted version.

Availability of data and materials
Data are available upon reasonable request.

Access to Document

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Goulao_etal_BMCTrials_Patient_Public_Involvement_VOR
Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
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Cite this

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title = "Patient and public involvement in numerical aspects of trials (PoINT): exploring patient and public partners experiences and identifying stakeholder priorities",

abstract = "Patient and public involvement is increasingly common in trials, but its quality remains variable in a lot of settings. Many key decisions in trials involve numbers, but patients are rarely involved in those discussions. We aimed to understand patient and public partners{\textquoteright} experiences and opinions regarding their involvement in numerical aspects of research and discuss and identify priorities, according to multiple stakeholders, around the most important numerical aspects in trials to involve patients and the public in.",

author = "Beatriz Goulao and Hanne Bruhn and Marion Campbell and Craig Ramsay and Katie Gillies",

note = "The first author was supported to develop this research by the Wellcome Trust – Institutional Strategic Support Fund at the University of Aberdeen. Acknowledgements We thank our focus group participants and experts attending the online priority setting meeting for their valuable input. We would like to thank PoINT{\textquoteright}s patient partner, Richard Caie, for his support preparing the materials used in the priority setting meeting and his input on the design of the project. We would like to thank Dr Dwayne Boyers for his input on opportunities for PPI in health economics in trials and Dr Rumana Newlands for her support in the conduct of one of the focus groups. We would like to thank Paul Manson for his input in the search strategy used in our systematic review. The project meetings could not have been conducted without the support of our external facilitator, Katherine Cowan, and our administrative support, Caroline Whiting, Beverly Smith and Caroline Burnett. Authors{\textquoteright} contributions BG, MC, KG and CR conceptualised the study. BG designed the topic guide that was reviewed by HB. BG and HB collected and analysed the data. All authors contributed to the interpretation of results. BG wrote the first draft of the manuscript. All authors commented on the manuscript and approve its submitted version. Availability of data and materials Data are available upon reasonable request.",

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AU - Ramsay, Craig

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N1 - The first author was supported to develop this research by the Wellcome Trust – Institutional Strategic Support Fund at the University of Aberdeen. Acknowledgements We thank our focus group participants and experts attending the online priority setting meeting for their valuable input. We would like to thank PoINT’s patient partner, Richard Caie, for his support preparing the materials used in the priority setting meeting and his input on the design of the project. We would like to thank Dr Dwayne Boyers for his input on opportunities for PPI in health economics in trials and Dr Rumana Newlands for her support in the conduct of one of the focus groups. We would like to thank Paul Manson for his input in the search strategy used in our systematic review. The project meetings could not have been conducted without the support of our external facilitator, Katherine Cowan, and our administrative support, Caroline Whiting, Beverly Smith and Caroline Burnett. Authors’ contributions BG, MC, KG and CR conceptualised the study. BG designed the topic guide that was reviewed by HB. BG and HB collected and analysed the data. All authors contributed to the interpretation of results. BG wrote the first draft of the manuscript. All authors commented on the manuscript and approve its submitted version. Availability of data and materials Data are available upon reasonable request.

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AB - Patient and public involvement is increasingly common in trials, but its quality remains variable in a lot of settings. Many key decisions in trials involve numbers, but patients are rarely involved in those discussions. We aimed to understand patient and public partners’ experiences and opinions regarding their involvement in numerical aspects of research and discuss and identify priorities, according to multiple stakeholders, around the most important numerical aspects in trials to involve patients and the public in.

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Patient and public involvement in numerical aspects of trials (PoINT): exploring patient and public partners experiences and identifying stakeholder priorities

Abstract

Bibliographical note

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