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The student patient alliance: development and formative evaluation of an initiative to support collaborations between patient and public involvement partners and doctoral students

BACKGROUND: While the integration of patient and public involvement (PPI) in clinical research is now widespread and recommended as standard practice, meaningful PPI in pre-clinical, discovery science research is more difficult to achieve. One potential way to address this is by integrating PPI into...

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Autores principales: Simons, Gwenda, Birch, Rebecca, Stocks, Joanne, Insch, Elspeth, Rijckborst, Rob, Neag, Georgiana, McColm, Heidi, Romaniuk, Leigh, Wright, Claire, Phillips, Bethan E., Jones, Simon W., Pratt, Arthur G., Siebert, Stefan, Raza, Karim, Falahee, Marie
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10548699/
https://www.ncbi.nlm.nih.gov/pubmed/37789423
http://dx.doi.org/10.1186/s41927-023-00359-2
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author Simons, Gwenda
Birch, Rebecca
Stocks, Joanne
Insch, Elspeth
Rijckborst, Rob
Neag, Georgiana
McColm, Heidi
Romaniuk, Leigh
Wright, Claire
Phillips, Bethan E.
Jones, Simon W.
Pratt, Arthur G.
Siebert, Stefan
Raza, Karim
Falahee, Marie
author_facet Simons, Gwenda
Birch, Rebecca
Stocks, Joanne
Insch, Elspeth
Rijckborst, Rob
Neag, Georgiana
McColm, Heidi
Romaniuk, Leigh
Wright, Claire
Phillips, Bethan E.
Jones, Simon W.
Pratt, Arthur G.
Siebert, Stefan
Raza, Karim
Falahee, Marie
author_sort Simons, Gwenda
collection PubMed
description BACKGROUND: While the integration of patient and public involvement (PPI) in clinical research is now widespread and recommended as standard practice, meaningful PPI in pre-clinical, discovery science research is more difficult to achieve. One potential way to address this is by integrating PPI into the training programmes of discovery science postgraduate doctoral students. This paper describes the development and formative evaluation of the Student Patient Alliance (SPA), a programme developed at the University of Birmingham that connects PPI partners with doctoral students. METHODS: Following a successful pilot of the SPA by the Rheumatology Research Group at the University of Birmingham, the scheme was implemented across several collaborating Versus Arthritis / Medical Research Council (MRC) centres of excellence. Doctoral students were partnered with PPI partners, provided with initial information and guidance, and then encouraged to work together on research and public engagement activities. After six months, students, their PPI partners and the PPI coordinators at each centre completed brief surveys about their participation in the SPA. RESULTS: Both doctoral students and their PPI partners felt that taking part in SPA had a positive impact on understanding, motivation and communication skills. Students reported an increased understanding of PPI and patient priorities and reported improved public engagement skills. Their PPI partners reported a positive impact of the collaboration with the students. They enjoyed learning about the student’s research and contributing to the student’s personal development. PPI coordinators also highlighted the benefits of the SPA, but noted some challenges they had experienced, such as difficulties matching students with PPI partners. CONCLUSIONS: The SPA was valued by students and PPI partners, and it is likely that initiatives of this kind would enhance students’ PPI and public engagement skills and awareness of patients’ experiences on a wider scale. However, appropriate resources are needed at an institutional level to support the implementation of effective programmes of this kind on a larger scale. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s41927-023-00359-2.
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spelling pubmed-105486992023-10-05 The student patient alliance: development and formative evaluation of an initiative to support collaborations between patient and public involvement partners and doctoral students Simons, Gwenda Birch, Rebecca Stocks, Joanne Insch, Elspeth Rijckborst, Rob Neag, Georgiana McColm, Heidi Romaniuk, Leigh Wright, Claire Phillips, Bethan E. Jones, Simon W. Pratt, Arthur G. Siebert, Stefan Raza, Karim Falahee, Marie BMC Rheumatol Research BACKGROUND: While the integration of patient and public involvement (PPI) in clinical research is now widespread and recommended as standard practice, meaningful PPI in pre-clinical, discovery science research is more difficult to achieve. One potential way to address this is by integrating PPI into the training programmes of discovery science postgraduate doctoral students. This paper describes the development and formative evaluation of the Student Patient Alliance (SPA), a programme developed at the University of Birmingham that connects PPI partners with doctoral students. METHODS: Following a successful pilot of the SPA by the Rheumatology Research Group at the University of Birmingham, the scheme was implemented across several collaborating Versus Arthritis / Medical Research Council (MRC) centres of excellence. Doctoral students were partnered with PPI partners, provided with initial information and guidance, and then encouraged to work together on research and public engagement activities. After six months, students, their PPI partners and the PPI coordinators at each centre completed brief surveys about their participation in the SPA. RESULTS: Both doctoral students and their PPI partners felt that taking part in SPA had a positive impact on understanding, motivation and communication skills. Students reported an increased understanding of PPI and patient priorities and reported improved public engagement skills. Their PPI partners reported a positive impact of the collaboration with the students. They enjoyed learning about the student’s research and contributing to the student’s personal development. PPI coordinators also highlighted the benefits of the SPA, but noted some challenges they had experienced, such as difficulties matching students with PPI partners. CONCLUSIONS: The SPA was valued by students and PPI partners, and it is likely that initiatives of this kind would enhance students’ PPI and public engagement skills and awareness of patients’ experiences on a wider scale. However, appropriate resources are needed at an institutional level to support the implementation of effective programmes of this kind on a larger scale. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s41927-023-00359-2. BioMed Central 2023-10-03 /pmc/articles/PMC10548699/ /pubmed/37789423 http://dx.doi.org/10.1186/s41927-023-00359-2 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This 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/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://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 Research
Simons, Gwenda
Birch, Rebecca
Stocks, Joanne
Insch, Elspeth
Rijckborst, Rob
Neag, Georgiana
McColm, Heidi
Romaniuk, Leigh
Wright, Claire
Phillips, Bethan E.
Jones, Simon W.
Pratt, Arthur G.
Siebert, Stefan
Raza, Karim
Falahee, Marie
The student patient alliance: development and formative evaluation of an initiative to support collaborations between patient and public involvement partners and doctoral students
title The student patient alliance: development and formative evaluation of an initiative to support collaborations between patient and public involvement partners and doctoral students
title_full The student patient alliance: development and formative evaluation of an initiative to support collaborations between patient and public involvement partners and doctoral students
title_fullStr The student patient alliance: development and formative evaluation of an initiative to support collaborations between patient and public involvement partners and doctoral students
title_full_unstemmed The student patient alliance: development and formative evaluation of an initiative to support collaborations between patient and public involvement partners and doctoral students
title_short The student patient alliance: development and formative evaluation of an initiative to support collaborations between patient and public involvement partners and doctoral students
title_sort student patient alliance: development and formative evaluation of an initiative to support collaborations between patient and public involvement partners and doctoral students
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10548699/
https://www.ncbi.nlm.nih.gov/pubmed/37789423
http://dx.doi.org/10.1186/s41927-023-00359-2
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