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

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.

Citation

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

• Journal Article Type: Article
• Acceptance Date: Sep 18, 2023
• Online Publication Date: Oct 3, 2023
• Publication Date: 2023
• Deposit Date: Oct 5, 2023
• Publicly Available Date: Oct 5, 2023
• Journal: BMC Rheumatology
• Electronic ISSN: 2520-1026
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 7
• Issue: 1
• Article Number: 36
• DOI: https://doi.org/10.1186/s41927-023-00359-2
• Keywords: Patient and public involvement, Discovery science, Doctoral students, Rheumatic and musculoskeletal diseases
• Public URL: https://nottingham-repository.worktribe.com/output/25679572
• Publisher URL: https://bmcrheumatol.biomedcentral.com/articles/10.1186/s41927-023-00359-2
• PMID: 37789423