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

Gwenda Simons; Rebecca Birch; Joanne Stocks; Elspeth Insch; Rob Rijckborst; Georgiana Neag; Heidi McColm; Leigh Romaniuk; Claire Wright; Bethan E. Phillips; Simon W. Jones; Arthur G. Pratt; Stefan Siebert; Karim Raza; Marie Falahee

doi:10.1186/s41927-023-00359-2

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

Gwenda Simons, Rebecca Birch, Joanne Stocks, Elspeth Insch, Rob Rijckborst, Georgiana Neag, Heidi McColm, Leigh Romaniuk, Claire Wright, Bethan E. Phillips, Simon W. Jones, Arthur G. Pratt, Stefan Siebert, Karim Raza, Marie Falahee^*

^*Corresponding author for this work

Inflammation and Ageing

Research output: Contribution to journal › Article › peer-review

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Abstract

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.

Original language	English
Article number	36
Number of pages	13
Journal	BMC Rheumatology
Volume	7
Issue number	1
DOIs	https://doi.org/10.1186/s41927-023-00359-2
Publication status	Published - 3 Oct 2023

Bibliographical note

Funding:
This work was supported by the Research into Inflammatory Arthritis Centre Versus Arthritis (RACE) (grant number 22072) and the National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre (BRC). KR was supported by the NIHR Birmingham Biomedical Research Centre. Newcastle contributors were was supported by the NIHR Newcastle Biomedical Research Centre. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. GN was supported by a PhD studentship from CMAR funded by the Medical Research Council and Versus Arthritis, grant number MR/K00414X/1. SWJ was supported by the Medical Research Council, grant number MR/W026961/1.

Keywords

Rheumatic and musculoskeletal diseases.
Doctoral students
Patient and public involvement
Discovery science

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SimonsG2023studentFinal published version, 1.11 MBLicence: Creative Commons: Attribution (CC BY)

2 Finished
3 Active

NIHR BRC Theme- Arthritis
Fisher, B. (Co-Investigator), Filer, A. (Co-Investigator), Knight, A. (Co-Investigator), Raza, K. (Principal Investigator), Falahee, M. (Co-Investigator), Croft, A. (Co-Investigator) & Rowe, A. (Co-Investigator)
NIHR
1/12/22 → 30/11/27
Project: Other Government Departments
MICA: Synovial fibroblast pain pathotypes: A roadmap to understanding and targeting the complexity of patient-reported joint pain in osteoarthritis
Jones, S. (Principal Investigator) & Gkoutos, G. (Co-Investigator)
Medical Research Council
1/05/22 → 31/12/25
Project: Research Councils
Rheumatoid Arthritis Centre for Excellence (RACE 2)
Filer, A. (Co-Investigator), Lord, J. (Co-Investigator), Scheel-Toellner, D. (Co-Investigator), Anderson, G. (Co-Investigator), Buckley, C. (Co-Investigator), Clark, A. (Co-Investigator), Falahee, M. (Co-Investigator), Raza, K. (Researcher) & Croft, A. (Principal Investigator)
ARTHRITIS RESEARCH UK
1/04/19 → 30/09/25
Project: Research
MRC - ARUK Centre for Musculoskeletal Ageing Research
Jones, S. (Co-Investigator), Buckley, C. (Co-Investigator), Lord, J. (Principal Investigator), Greig, C. (Co-Investigator) & Raza, K. (Co-Investigator)
Medical Research Council
1/10/17 → 30/06/23
Project: Research Councils
Rheumatoid Arthritis Centre of Excellence (RACE - Towards a Cure)
Anderson, G. (Co-Investigator), Lord, J. (Co-Investigator), Buckley, C. (Co-Investigator) & Raza, K. (Principal Investigator)
ARTHRITIS RESEARCH CAMPAIGN
1/10/13 → 31/03/19
Project: Research

Cite this

Simons, G., Birch, R., Stocks, J., Insch, E., Rijckborst, R., Neag, G., McColm, H., Romaniuk, L., Wright, C., Phillips, B. E., Jones, S. W., Pratt, A. G., Siebert, S., Raza, K., & Falahee, M. (2023). The student patient alliance: development and formative evaluation of an initiative to support collaborations between patient and public involvement partners and doctoral students. BMC Rheumatology, 7(1), Article 36. https://doi.org/10.1186/s41927-023-00359-2

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abstract = "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{\textquoteright}s research and contributing to the student{\textquoteright}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{\textquoteright} PPI and public engagement skills and awareness of patients{\textquoteright} 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.",

keywords = "Rheumatic and musculoskeletal diseases., Doctoral students, Patient and public involvement, Discovery science",

author = "Gwenda Simons and Rebecca Birch and Joanne Stocks and Elspeth Insch and Rob Rijckborst and Georgiana Neag and Heidi McColm and Leigh Romaniuk and Claire Wright and Phillips, {Bethan E.} and Jones, {Simon W.} and Pratt, {Arthur G.} and Stefan Siebert and Karim Raza and Marie Falahee",

note = "Funding: This work was supported by the Research into Inflammatory Arthritis Centre Versus Arthritis (RACE) (grant number 22072) and the National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre (BRC). KR was supported by the NIHR Birmingham Biomedical Research Centre. Newcastle contributors were was supported by the NIHR Newcastle Biomedical Research Centre. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. GN was supported by a PhD studentship from CMAR funded by the Medical Research Council and Versus Arthritis, grant number MR/K00414X/1. SWJ was supported by the Medical Research Council, grant number MR/W026961/1.",

year = "2023",

month = oct,

day = "3",

doi = "10.1186/s41927-023-00359-2",

language = "English",

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Simons, G, Birch, R, Stocks, J, Insch, E, Rijckborst, R, Neag, G, McColm, H, Romaniuk, L, Wright, C, Phillips, BE, Jones, SW, Pratt, AG, Siebert, S, Raza, K & Falahee, M 2023, 'The student patient alliance: development and formative evaluation of an initiative to support collaborations between patient and public involvement partners and doctoral students', BMC Rheumatology, vol. 7, no. 1, 36. https://doi.org/10.1186/s41927-023-00359-2

TY - JOUR

T1 - The student patient alliance

T2 - development and formative evaluation of an initiative to support collaborations between patient and public involvement partners and doctoral students

AU - Simons, Gwenda

AU - Birch, Rebecca

AU - Stocks, Joanne

AU - Insch, Elspeth

AU - Rijckborst, Rob

AU - Neag, Georgiana

AU - McColm, Heidi

AU - Romaniuk, Leigh

AU - Wright, Claire

AU - Phillips, Bethan E.

AU - Jones, Simon W.

AU - Pratt, Arthur G.

AU - Siebert, Stefan

AU - Raza, Karim

AU - Falahee, Marie

N1 - Funding: This work was supported by the Research into Inflammatory Arthritis Centre Versus Arthritis (RACE) (grant number 22072) and the National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre (BRC). KR was supported by the NIHR Birmingham Biomedical Research Centre. Newcastle contributors were was supported by the NIHR Newcastle Biomedical Research Centre. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. GN was supported by a PhD studentship from CMAR funded by the Medical Research Council and Versus Arthritis, grant number MR/K00414X/1. SWJ was supported by the Medical Research Council, grant number MR/W026961/1.

PY - 2023/10/3

Y1 - 2023/10/3

N2 - 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.

AB - 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.

KW - Rheumatic and musculoskeletal diseases.

KW - Doctoral students

KW - Patient and public involvement

KW - Discovery science

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DO - 10.1186/s41927-023-00359-2

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JO - BMC Rheumatology

JF - BMC Rheumatology

IS - 1

M1 - 36

ER -

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

Abstract

Bibliographical note

Keywords

Access to Document

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Projects

NIHR BRC Theme- Arthritis

MICA: Synovial fibroblast pain pathotypes: A roadmap to understanding and targeting the complexity of patient-reported joint pain in osteoarthritis

Rheumatoid Arthritis Centre for Excellence (RACE 2)

MRC - ARUK Centre for Musculoskeletal Ageing Research

Rheumatoid Arthritis Centre of Excellence (RACE - Towards a Cure)

Cite this