Development and evaluation of patient research partner involvement in a multi-disciplinary European translational research project

Background
Patient and public involvement (PPI) enhances research quality and is central to contemporary
health policy. The value of PPI is recognised in rheumatology research, though there are limited
examples of PPI in laboratory/translational science. The EU FP7 funded ‘EuroTEAM’ (Towards Early
biomarkers in Arthritis Management) project developed biomarker-based approaches to predict the
future development of rheumatoid arthritis and incorporated both translational and psychosocial
research with public involvement.
Objectives
To describe the development of PPI in EuroTEAM, assess the impact of PPI from the perspectives of
researchers and patient research partners (PRPs), and formulate recommendations for PPI in future
projects.
Materials and methods
Two mixed-methods surveys (one for PRPs and one for researchers) were developed to assess the
impact of PPI on specific work packages and on the project overall. All researchers and PRPs were
invited to complete a survey towards the end of the project. PRPs contributed to the development
of the surveys, and the interpretation and reporting of the results.
Results
There was consensus about the positive impact of PPI on the research and on the experiences of
those involved. Researchers described adapting their practice in future projects to facilitate PPI.
Spin-off projects and ongoing collaborations between PRPs and researchers reflected the value of
PPI to participants. PPI was integrated more frequently in psychosocial research, though examples of
PPI in laboratory/translational science were also described. PRPs asked for more opportunities to
contribute meaningfully and for more extensive feedback on their contributions.
Conclusions
The findings were used to formulate recommendations for the effective involvement of patients in
future projects, including specific training requirements for PRPs and researchers, the identification
of PRP focused tasks/deliverables at the project planning stage, and supporting access to
involvement for all PRPs. The multidisciplinary approach, incorporating basic science and
psychosocial research, facilitated patient involvement overall.