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Patient and public involvement in research: from tokenistic box ticking to valued team members
BACKGROUND: Patient and public involvement (PPI) in research envisages a relationship built throughout the lifespan of a research project between academics, clinicians and PPI colleagues in order to inform, plan, execute and, in due course, disseminate and translate research. To be meaningful, all s...
Autores principales: | , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2020
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7153227/ https://www.ncbi.nlm.nih.gov/pubmed/32279658 http://dx.doi.org/10.1186/s12916-020-01544-7 |
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author | Jackson, Tracy Pinnock, Hilary Liew, Su May Horne, Elsie Ehrlich, Elisabeth Fulton, Olivia Worth, Allison Sheikh, Aziz De Simoni, Anna |
author_facet | Jackson, Tracy Pinnock, Hilary Liew, Su May Horne, Elsie Ehrlich, Elisabeth Fulton, Olivia Worth, Allison Sheikh, Aziz De Simoni, Anna |
author_sort | Jackson, Tracy |
collection | PubMed |
description | BACKGROUND: Patient and public involvement (PPI) in research envisages a relationship built throughout the lifespan of a research project between academics, clinicians and PPI colleagues in order to inform, plan, execute and, in due course, disseminate and translate research. To be meaningful, all stakeholders need to actively engage in this exchange of expertise. However, despite some funders requiring PPI plans to be included in grant applications, there remains a gap between what is expected and what is delivered. MAIN BODY: As an exemplar, we reflect on how, in the Asthma UK Centre for Applied Research (AUKCAR), we set out to create a supportive, organised environment with the overarching value of ‘keeping patients at the heart of everything we do’. The key has been in planning and creating a suitably funded organisational infrastructure with dedicated PPI researchers along with the development of and expectation to abide by an agreed set of norms and values. Specifically, expecting AUKCAR PhD students and early career researchers to engage with PPI has established a working mode that we hope will last. Regular interactions and proactive Patient Leads increase PPI network cohesion. CONCLUSION: With adaptation, the AUKCAR PPI model can be translated to international contexts. |
format | Online Article Text |
id | pubmed-7153227 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-71532272020-04-19 Patient and public involvement in research: from tokenistic box ticking to valued team members Jackson, Tracy Pinnock, Hilary Liew, Su May Horne, Elsie Ehrlich, Elisabeth Fulton, Olivia Worth, Allison Sheikh, Aziz De Simoni, Anna BMC Med Opinion BACKGROUND: Patient and public involvement (PPI) in research envisages a relationship built throughout the lifespan of a research project between academics, clinicians and PPI colleagues in order to inform, plan, execute and, in due course, disseminate and translate research. To be meaningful, all stakeholders need to actively engage in this exchange of expertise. However, despite some funders requiring PPI plans to be included in grant applications, there remains a gap between what is expected and what is delivered. MAIN BODY: As an exemplar, we reflect on how, in the Asthma UK Centre for Applied Research (AUKCAR), we set out to create a supportive, organised environment with the overarching value of ‘keeping patients at the heart of everything we do’. The key has been in planning and creating a suitably funded organisational infrastructure with dedicated PPI researchers along with the development of and expectation to abide by an agreed set of norms and values. Specifically, expecting AUKCAR PhD students and early career researchers to engage with PPI has established a working mode that we hope will last. Regular interactions and proactive Patient Leads increase PPI network cohesion. CONCLUSION: With adaptation, the AUKCAR PPI model can be translated to international contexts. BioMed Central 2020-04-13 /pmc/articles/PMC7153227/ /pubmed/32279658 http://dx.doi.org/10.1186/s12916-020-01544-7 Text en © The Author(s) 2020 Open AccessThis 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. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. 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. |
spellingShingle | Opinion Jackson, Tracy Pinnock, Hilary Liew, Su May Horne, Elsie Ehrlich, Elisabeth Fulton, Olivia Worth, Allison Sheikh, Aziz De Simoni, Anna Patient and public involvement in research: from tokenistic box ticking to valued team members |
title | Patient and public involvement in research: from tokenistic box ticking to valued team members |
title_full | Patient and public involvement in research: from tokenistic box ticking to valued team members |
title_fullStr | Patient and public involvement in research: from tokenistic box ticking to valued team members |
title_full_unstemmed | Patient and public involvement in research: from tokenistic box ticking to valued team members |
title_short | Patient and public involvement in research: from tokenistic box ticking to valued team members |
title_sort | patient and public involvement in research: from tokenistic box ticking to valued team members |
topic | Opinion |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7153227/ https://www.ncbi.nlm.nih.gov/pubmed/32279658 http://dx.doi.org/10.1186/s12916-020-01544-7 |
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