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© 2023. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.

Abstract

Introduction

Patient and public involvement (PPI) in research emphasizes the importance of doing research with, rather than for people with lived health/illness experience(s). The purpose of this scoping review is to investigate the breadth and depth of scientific literature on PPI in cancer research and to identify how is PPI applied and reported in cancer research.

Methods

We searched MEDLINE, Embase, CINAHL, and PsycInfo up to March 2022. All titles/abstracts and full-text results were screened by two reviewers. Data were analyzed and are presented in both narrative and tabular format.

Results

We screened 22,009 titles/abstract, reviewed 375 full-text articles, of which 101 studies were included in this review. 66 papers applied PPI; 35 used co-design methodologies. PPI in cancer research in published research has increased steadily since 2015 and often includes those with a past diagnosis of cancer or relatives/informal caregivers. The most common applied methods were workshops or interviews. PPI was generally used at the level of consultation/advisor and occurred mainly in early stages of research. Costs related to PPI were mentioned in 25 papers and four papers described training provided for PPI.

Conclusions

Results of our review demonstrate the nature and extent of PPI expansion in cancer research. Researchers and research organizations entering the fray of PPI should consider planning and reporting elements such as the stage, level, and role type of PPI, as well as methods and strategies put in place to assure diversity. Furthermore, a thorough evaluation of whether all these elements meet the stated PPI purpose will help to grasp its impact on research outcomes.

Patient or Public Contribution

Two patients participated in the stakeholder consultation as part of the scoping review methodology, contributed to the discussion on refining the results, and critically reviewed the manuscript. Both are co-authors of this manuscript.

Details

Title
Patient and public involvement in cancer research: A scoping review
Author
Colomer-Lahiguera, Sara 1   VIAFID ORCID Logo  ; Steimer, Matthieu 2 ; Ellis, Ursula 3   VIAFID ORCID Logo  ; Eicher, Manuela 1   VIAFID ORCID Logo  ; Tompson, Margaret 4 ; Corbière, Tourane 1 ; Haase, Kristen R 5   VIAFID ORCID Logo 

 Institute of Higher Education and Research in Healthcare (IUFRS), Faculty of Biology and Medicine, University of Lausanne (UNIL), Lausanne University Hospital (CHUV), Lausanne, Switzerland 
 Master of Advanced Studies in Public Health student, Institute of Global Health, Geneva University, Geneva, Switzerland 
 Woodward Library, University of British Columbia, Vancouver, Canada 
 Saskatchewan, Canada 
 School of Nursing, University of British Columbia, Vancouver, Canada 
Pages
15530-15543
Section
REVIEW
Publication year
2023
Publication date
Jul 2023
Publisher
John Wiley & Sons, Inc.
e-ISSN
20457634
Source type
Scholarly Journal
Language of publication
English
ProQuest document ID
2848864900
Copyright
© 2023. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.