Patient and public involvement in an international rheumatology translational research project: an evaluation

Savia de Souza; Eva C Johansson; Susanne Karlfeldt; Karim Raza; Ruth Williams

doi:10.1186/s41927-022-00311-w

Patient and public involvement in an international rheumatology translational research project: an evaluation

BMC Rheumatol. 2022 Oct 22;6(1):83. doi: 10.1186/s41927-022-00311-w.

Authors

Savia de Souza¹, Eva C Johansson², Susanne Karlfeldt³, Karim Raza⁴, Ruth Williams⁵

Affiliations

¹ Centre for Rheumatic Diseases, King's College London, London, SE5 9RJ, UK. savia.desouza@outlook.com.
² Swedish Rheumatism Association (Reumatikerförbundet), Box 90337, 120 25, Stockholm, Sweden.
³ Rheumatology Unit, Karolinska Institutet and Academic Specialist Center, Stockholm Health Services, 171 77, Stockholm, Sweden.
⁴ Institute of Inflammation and Ageing, University of Birmingham, Birmingham, B15 2WB, UK.
⁵ Centre for Rheumatic Diseases, King's College London, London, SE5 9RJ, UK.

Abstract

Background: Rheuma Tolerance for Cure (RTCure) is a five-year international collaboration between academia, industry and patients/members of the public. It focuses on developing approaches to predict the onset of rheumatoid arthritis (RA) and designing clinical trials to reduce the risk of disease development through immune-tolerising and other treatments. We conducted a mid-term evaluation of patient and public involvement (PPI) within the project.

Methods: Two surveys on PPI were co-designed by the PPI Coordinator, Patient/Public Research Partners (PRPs) and a researcher. Both anonymous, electronic surveys were distributed to 61 researchers and 9 PRPs. Quantitative survey data were analysed using descriptive statistics and free text responses underwent inductive thematic analysis.

Results: Researcher and Patient response rates were 33% and 78%, respectively. Quantitative Researcher Survey data highlighted that (i) responding researchers represented all seven Work Packages (WPs), (ii) 40% thought PRPs had made a large or extremely large contribution to their own WPs, (iii) 55% thought PPI has had a moderate or large impact on RTCure, (iv) 75% worked with PRPs in RTCure, and (v) 60% said PRPs had affected their research thinking. Quantitative PRP Survey data highlighted that (i) PRPs were most involved in four WPs, (ii) 43% thought they had made a minor contribution to their main WP, (iii) 57% thought PPI has had a small impact on RTCure, and (iv) 57% thought they received too little feedback on the outcome of their contribution to different tasks. Four main themes were identified in both surveys: 'PRP contributions', 'Experiences of PPI', 'Impact of PPI on RTCure', and 'How PPI can be improved'. Two additional themes from the Researcher Survey were 'Impact of PPI on researchers' and 'Influence on Future Projects', and from the PRP Survey were 'Impact of PPI on PRPs' and 'Engagement with PRPs'.

Conclusion: PPI seemed to have a significant impact on RTCure, however, PRPs were less aware. A focus on improving communication between PRPs and researchers (facilitated by the PPI Coordinator), and providing PPI training for researchers is likely to improve involvement. Complex legal agreements for PRPs should be avoided and careful attention paid to appropriate PRP compensation.

Keywords: Clinical trials; Evaluation; Patient and public involvement; Patient engagement; Rheumatoid arthritis; Surveys; Translational research.

Grants and funding

777357/EU/EFPIA Innovative Medicines Initiative 2 Joint Undertaking