Abstract
Plain English summaryPatient and public involvement (PPI) improves the quality of health research and ensures that research is relevant to patients’ needs. Though PPI is increasingly evident in clinical and health services research, there are few examples in the research literature of effective PPI in translational and laboratory-based research. In this paper, we describe the development and evaluation of PPI in a multi-centre European project (EuroTEAM – Towards Early biomarkers in Arthritis Management) that included both translational and laboratory-based and psychosocial research. We found that although most PPI in EuroTEAM was centred around the psychosocial research, there were examples of PPI in the laboratory studies. As the project evolved, researchers became better at accommodating PPI and identifying PPI opportunities. It was generally agreed that PPI had a positive impact on the project overall, particularly on public engagement with the research. We concluded that the inclusion of both psychosocial and laboratory-based research in the same project facilitated PPI across all aspects of the research. In future projects, we would try to specify individual PPI activities in more detail at the project-planning stage, and better accommodate patient partners who are not native speakers of English.BackgroundPatient and public involvement (PPI) enhances research quality and relevance and is central to contemporary health policy. The value of PPI has been recognised in rheumatology research, though there are limited examples of PPI in basic and translational science. The EU FP7 funded ‘EuroTEAM’ (Towards Early biomarkers in Arthritis Management) project was established to develop biomarker-based approaches to predict the future development of rheumatoid arthritis and incorporated psychosocial research to investigate the perceptions of ‘at risk’ individuals about predictive testing, and to develop informational resources about rheumatoid arthritis (RA) risk. Patient involvement was central to EuroTEAM from the inception of the project. The objective of this paper is to describe the development of PPI in EuroTEAM, formatively assess the impact of PPI from the perspectives of researchers and patient research partners (PRPs), reflect on successes and lessons learned, and formulate recommendations to guide future projects.MethodsTwo mixed-methods surveys (for PRPs and researchers) and a teleconference were undertaken to assess the impact of PPI on individual work packages and on EuroTEAM overall.ResultsThere was consensus about the positive impact of PPI on the research and on the experiences of those involved. In particular, the positive impact of PPI on the personal development of researchers, and on effective public engagement with EuroTEAM research were highlighted. 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 more frequently integrated in psychosocial research, though examples of PPI in laboratory/translational science were also described. PRPs asked for more opportunities to contribute meaningfully to basic scientific research and for more extensive feedback on their contributions.ConclusionsThe findings were used to formulate recommendations to guide effective involvement of patients in future similar projects, including identifying 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. Importantly, the distinctive multidisciplinary approach of EuroTEAM, incorporating both basic science and psychosocial research, facilitated patient involvement in the project overall.
Highlights
Patient and public involvement (PPI) enhances research quality and relevance and is central to contemporary health policy
For me a new door has opened, and currently I am in contact with Patient research partner (PRP) to discuss my future research proposal.”. These findings demonstrate the positive impact of patient and public involvement (PPI) on a multi-centre, multidisciplinary European translational research project that incorporated both laboratory/translational science and psychosocial research
There was agreement between all respondents that the PRPs were able to make significant positive contributions to the psychosocial research and dissemination activities associated with WP4, but several reported that PRPs were less able to make a meaningful contribution to the laboratory-based research undertaken in WPs1–3
Summary
Patient and public involvement (PPI) enhances research quality and relevance and is central to contemporary health policy. PPI has been defined as research being carried out “‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them” [2] It is a central theme of the National Institute for Health Research (NIHR) in the United Kingdom, and evidence of active engagement with PPI is a requirement for many funding bodies, including the European Union’s Horizon 2020 (H2020) funding stream. PPI enhances research quality, efficiency, and transparency, and helps ensure that public benefit is the key focus of the work undertaken Consultation with those affected by research outcomes has augmented research relevance and validity, and facilitated wider dissemination and engagement with research from patients / members of the public. Patients’ experience of living with a disease has brought additional and unique perspectives [5]
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
