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Integrating Patient-Centred Research in the Canadian Cancer Trials Group

The inclusion of patients as partners in research is a key link in the delivery of patient-centred care in healthcare systems. Despite genuine intentions to engage patients in authentic partnerships, efforts can result in tokenism and benefits of engagement are missed. Understanding how patient enga...

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Detalles Bibliográficos
Autores principales: Needham, J., Taylor, J., Nomikos, D.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7924353/
https://www.ncbi.nlm.nih.gov/pubmed/33494312
http://dx.doi.org/10.3390/curroncol28010062
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author Needham, J.
Taylor, J.
Nomikos, D.
author_facet Needham, J.
Taylor, J.
Nomikos, D.
author_sort Needham, J.
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description The inclusion of patients as partners in research is a key link in the delivery of patient-centred care in healthcare systems. Despite genuine intentions to engage patients in authentic partnerships, efforts can result in tokenism and benefits of engagement are missed. Understanding how patient engagement provides value along the research to patient-care continuum and how to best engage patients as partners are key. This document describes the method taken by the Canadian Cancer Trials Group (CCTG) to implement meaningful patient centricity and engagement and the benefits realized. Originally, Patient Representatives were recruited and assigned to CCTG Committees. Lacking guidance, the role was one of a passive meeting attendee. A gap analysis identified a need for clarity in expectations, understanding of the linkage to CCTG strategic objectives, and supporting tools and training. A plan was developed and successfully implemented in three phases, each phase building on the previous, the level of patient engagement simultaneously changing from “Inform” to “Involve” to “Collaborate” on the International Association for Public Participation (IAP2) scale. Results include significant contributions to increased patient accrual in CCTG trials, to increased CCTG grant funding, as well as recognition and adoption of these practices within Canada and internationally.
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spelling pubmed-79243532021-03-03 Integrating Patient-Centred Research in the Canadian Cancer Trials Group Needham, J. Taylor, J. Nomikos, D. Curr Oncol Perspective The inclusion of patients as partners in research is a key link in the delivery of patient-centred care in healthcare systems. Despite genuine intentions to engage patients in authentic partnerships, efforts can result in tokenism and benefits of engagement are missed. Understanding how patient engagement provides value along the research to patient-care continuum and how to best engage patients as partners are key. This document describes the method taken by the Canadian Cancer Trials Group (CCTG) to implement meaningful patient centricity and engagement and the benefits realized. Originally, Patient Representatives were recruited and assigned to CCTG Committees. Lacking guidance, the role was one of a passive meeting attendee. A gap analysis identified a need for clarity in expectations, understanding of the linkage to CCTG strategic objectives, and supporting tools and training. A plan was developed and successfully implemented in three phases, each phase building on the previous, the level of patient engagement simultaneously changing from “Inform” to “Involve” to “Collaborate” on the International Association for Public Participation (IAP2) scale. Results include significant contributions to increased patient accrual in CCTG trials, to increased CCTG grant funding, as well as recognition and adoption of these practices within Canada and internationally. MDPI 2021-01-21 /pmc/articles/PMC7924353/ /pubmed/33494312 http://dx.doi.org/10.3390/curroncol28010062 Text en © 2021 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Perspective
Needham, J.
Taylor, J.
Nomikos, D.
Integrating Patient-Centred Research in the Canadian Cancer Trials Group
title Integrating Patient-Centred Research in the Canadian Cancer Trials Group
title_full Integrating Patient-Centred Research in the Canadian Cancer Trials Group
title_fullStr Integrating Patient-Centred Research in the Canadian Cancer Trials Group
title_full_unstemmed Integrating Patient-Centred Research in the Canadian Cancer Trials Group
title_short Integrating Patient-Centred Research in the Canadian Cancer Trials Group
title_sort integrating patient-centred research in the canadian cancer trials group
topic Perspective
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7924353/
https://www.ncbi.nlm.nih.gov/pubmed/33494312
http://dx.doi.org/10.3390/curroncol28010062
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