The Student Patient Alliance: Development and formative evaluation of an initiative to support collaborations between patient and public involvement contributors and doctoral students

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 doctoral training programmes of discovery science postgraduate students. This paper describes the development and formative evaluation of the Student Patient Alliance (SPA), a programme developed at the University of Birmingham that partners PPI contributors 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 collaborating Versus Arthritis / MRC centres of excellence at a number of different collaborating centres. Students were partnered with PPI contributors, 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 students and their PPI partners felt that taking part in SPA had a very positive impact. Students reported an increased understanding of PPI and patient priorities and reported improved public engagement and communication skills. Their PPI partners reported a positive impact of the collaboration with the students. They enjoyed learning about the students research and contributing to the students personal development. PPI coordinators also highlighted the benefits of the SPA, but noted some challenges they had experienced, such as 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.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

KR was supported by the NIHR Birmingham Biomedical Research Centre. AP 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 MRC and Versus Arthritis. SWJ was supported by the Medical Research Council, grant number MR/W026961/1

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

In this paper, we report on the development and implementation of the Student Patient Alliance. Patient Research Partners and students were involved in the design of SPA and its evaluation. All participants were provided with information about the purpose of the evaluation. Participants verbally agreed to the recording of the evaluation meeting of the pilot programme. Completion and return of any of the surveys was voluntary for all and implied consent to participate. This was a service evaluation/PPI assessment exercise and according to the UK Health Research Authority, formal ethical approval is not needed for research of this kind.

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable.

Yes

Data Availability

The datasets generated and analysed during the current study are not publicly available due to the small sample size and the likelihood that individual data could be associated with a specific person. SPA resources are available upon application to the senior author.

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