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

BMC Rheumatol. 2023 Oct 3;7(1):36. doi: 10.1186/s41927-023-00359-2.

Authors

Gwenda Simons¹, Rebecca Birch², Joanne Stocks^{3

4

5

6}, Elspeth Insch⁷, Rob Rijckborst⁷, Georgiana Neag¹, Heidi McColm⁸, Leigh Romaniuk⁸, Claire Wright^{9

10}, Bethan E Phillips^{11

12}, Simon W Jones¹³, Arthur G Pratt^{8

14

15}, Stefan Siebert^{9

10}, Karim Raza^{1

16

17

18}, Marie Falahee¹⁹

Affiliations

¹ Rheumatology Research Group, Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, B15 2WB, UK.
² Research & Knowledge Transfer Office, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK.
³ National Institute for Health and Care Research (NIHR) Nottingham Biomedical Research Centre, University of Nottingham, Nottingham, UK.
⁴ Centre for Sport Exercise and Osteoarthritis Research Versus Arthritis, University of Nottingham, Nottingham, UK.
⁵ Pain Centre Versus Arthritis, University of Nottingham, Nottingham, UK.
⁶ Injury, Recovery and Inflammation Sciences, School of Medicine, University of Nottingham, Nottingham, UK.
⁷ Rheumatology Research Patient Partnership, University of Birmingham, Birmingham, UK.
⁸ Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle, UK.
⁹ School of Infection and Immunity, University of Glasgow, Glasgow, UK.
¹⁰ Research into Inflammatory Arthritis Centre Versus Arthritis, University of Glasgow, Glasgow, UK.
¹¹ Centre of Metabolism, Ageing & Physiology (COMAP), University of Nottingham, Royal Derby Hospital, Derby, UK.
¹² MRC-Versus Arthritis Centre for Musculoskeletal Ageing Research, University of Nottingham, Royal Derby Hospital, Derby, UK.
¹³ MRC- Versus Arthritis Centre for Musculoskeletal Ageing Research, Institute for Inflammation and Ageing, University of Birmingham, Birmingham, UK.
¹⁴ Research into Inflammatory Arthritis Centre Versus Arthritis, Newcastle University, Newcastle, UK.
¹⁵ Translational and Clinical Research Institute, Newcastle University, Newcastle, UK.
¹⁶ Research into Inflammatory Arthritis Centre Versus Arthritis, University of Birmingham, Birmingham, UK.
¹⁷ Sandwell and West Birmingham NHS Trust, Birmingham, UK.
¹⁸ Birmingham Biomedical Research Centre, National Institute for Health and Care Research (NIHR), Birmingham, UK.
¹⁹ Rheumatology Research Group, Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, B15 2WB, UK. m.falahee@bham.ac.uk.

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.

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

Abstract

Grants and funding