Cargando…
Patient and public involvement in cancer research: A scoping review
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 resear...
Autores principales: | , , , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
John Wiley and Sons Inc.
2023
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10417078/ https://www.ncbi.nlm.nih.gov/pubmed/37329180 http://dx.doi.org/10.1002/cam4.6200 |
_version_ | 1785087935427641344 |
---|---|
author | Colomer‐Lahiguera, Sara Steimer, Matthieu Ellis, Ursula Eicher, Manuela Tompson, Margaret Corbière, Tourane Haase, Kristen R. |
author_facet | Colomer‐Lahiguera, Sara Steimer, Matthieu Ellis, Ursula Eicher, Manuela Tompson, Margaret Corbière, Tourane Haase, Kristen R. |
author_sort | Colomer‐Lahiguera, Sara |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-10417078 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | John Wiley and Sons Inc. |
record_format | MEDLINE/PubMed |
spelling | pubmed-104170782023-08-12 Patient and public involvement in cancer research: A scoping review Colomer‐Lahiguera, Sara Steimer, Matthieu Ellis, Ursula Eicher, Manuela Tompson, Margaret Corbière, Tourane Haase, Kristen R. Cancer Med REVIEW 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. John Wiley and Sons Inc. 2023-06-16 /pmc/articles/PMC10417078/ /pubmed/37329180 http://dx.doi.org/10.1002/cam4.6200 Text en © 2023 The Authors. Cancer Medicine published by John Wiley & Sons Ltd. https://creativecommons.org/licenses/by/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | REVIEW Colomer‐Lahiguera, Sara Steimer, Matthieu Ellis, Ursula Eicher, Manuela Tompson, Margaret Corbière, Tourane Haase, Kristen R. Patient and public involvement in cancer research: A scoping review |
title | Patient and public involvement in cancer research: A scoping review |
title_full | Patient and public involvement in cancer research: A scoping review |
title_fullStr | Patient and public involvement in cancer research: A scoping review |
title_full_unstemmed | Patient and public involvement in cancer research: A scoping review |
title_short | Patient and public involvement in cancer research: A scoping review |
title_sort | patient and public involvement in cancer research: a scoping review |
topic | REVIEW |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10417078/ https://www.ncbi.nlm.nih.gov/pubmed/37329180 http://dx.doi.org/10.1002/cam4.6200 |
work_keys_str_mv | AT colomerlahiguerasara patientandpublicinvolvementincancerresearchascopingreview AT steimermatthieu patientandpublicinvolvementincancerresearchascopingreview AT ellisursula patientandpublicinvolvementincancerresearchascopingreview AT eichermanuela patientandpublicinvolvementincancerresearchascopingreview AT tompsonmargaret patientandpublicinvolvementincancerresearchascopingreview AT corbieretourane patientandpublicinvolvementincancerresearchascopingreview AT haasekristenr patientandpublicinvolvementincancerresearchascopingreview |