https://doi.org/10.4081/btvb.2024.125
Patient and public involvement in cancer-associated thrombosis research: necessary or glorified tokenism?
Submitted: 6 February 2024
Accepted: 11 March 2024
Published: 16 May 2024
Accepted: 11 March 2024
Abstract Views: 1086
PDF: 143
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All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.
Authors
The advantages of patient and public involvement (PPI) in research are becoming more widely known, however different research organizations have different rates of adoption. Comparably, some groups provide tokenistic participation in the research process, which is inconsistent with the extent to which PPI partners are truly involved. Recent developments in the field of cancer-associated thrombosis (CAT) research have shown how crucial PPI is to the foundation of the entire research process, from formulating the research question to disseminating the findings. This manuscript aims to present an overview of PPI within the framework of CAT research and demonstrate how, when used appropriately, PPI can improve a project’s overall success, rigor, and relevance.
Jones M, Chilton J, Feather L. Salute to Satchmo. London: I.P.C. Specialist & Professional Press Ltd. 1970:155.
Andrews LM, Allen H, Sheppard ZA, et al. More than just ticking a box… how patient and public involvement improved the research design and funding application for a project to evaluate a cycling intervention for hip osteoarthritis. Res Involv Engagem 2015;1:13.
DOI: https://doi.org/10.1186/s40900-015-0013-8
Supple D, Roberts A, Hudson V, et al. From tokenism to meaningful engagement: best practices in patient involvement in an EU project. Res Involv Engagem 2015;1:5.
DOI: https://doi.org/10.1186/s40900-015-0004-9
Health Research Authority (HRA). Public Involvement. 2022. Available from: https://www.hra.nhs.uk/planning-andimproving-research/best-practice/public-involvement
Engagement NC-oCfP. Introducing Public Engagement. 2023. Available from: https://www.publicengagement.ac.uk/about-engagement/what-public-engagement
Feynman C, Feynman M. The Pleasure of Finding Things Out. 1st ed. United States: Perseus Books 1999:270.
Partnership UPISD. UK Standards for Public Involvement: Better public involvement for better health and social care research. NIHR 2019. Available from: https://sites.google.com/nihr.ac.uk/pi-standards/home
White C, Noble S, Swan F, et al. ‘Hospice inpatient deep vein thrombosis detection (HIDDen) in advanced non malignant diseases’: a longitudinal pilot study. BMJ Support Palliat Care 2022;12:e767-e70.
DOI: https://doi.org/10.1136/bmjspcare-2019-002039
Seddon K, Elliott J, Johnson M, et al. Using the United Kingdom standards for public involvement to evaluate the impact of public involvement in a multinational clinical study. Res Involv Engagem 2021;7:22.
DOI: https://doi.org/10.1186/s40900-021-00264-3
Centre. MCRCatWCR. Public Involvement in Research Impact Toolkit (PIRIT) https://www.cardiff.ac.uk/marie-curieresearch-centre/patient-and-public-involvement/public-involvement-in-research-impact-toolkit-pirit2023
Kitson T, Osborne E, Noble S, et al. HIDDEN2: Study protocol for the hospital deep vein thrombosis detection study in patients with cancer receiving palliative care. BMJ Open 2023;13:e073049.
DOI: https://doi.org/10.1136/bmjopen-2023-073049
Goedegebuur J, Abbel D, Accassat S, et al. Towards optimal use of antithrombotic therapy of people with cancer at the end of life: A research protocol for the development and implementation of the SERENITY shared decision support tool. Thromb Res 2023;228:54-60.
DOI: https://doi.org/10.1016/j.thromres.2023.05.008
How to Cite
Noble, S. (2024). Patient and public involvement in cancer-associated thrombosis research: necessary or glorified tokenism?. Bleeding, Thrombosis and Vascular Biology, 3(s1). https://doi.org/10.4081/btvb.2024.125
Copyright (c) 2024 The Author(s)
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