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Background: The involvement of Patient Research Partners in rheumatology research is increasingly recommended, but there is a lack of clear guidance on its implementation in basic laboratory-based rheumatology research. Public and Patient Involvement (PPI) processes are rarely detailed in this type of research. To address this gap, we share the process of embedding PPI from conception and throughout the lifecycle of a laboratory research project investigating the biological role of an enzyme in rheumatoid arthritis.
Objectives: Report the process and impact of PPI in laboratory-based rheumatology research across both pre-award and post-award phases.
Pre-award phase: Generating ideas, developing collaborations, planning, designing and writing funding applications.
Post-award phase: Recruitment of PPI panel, training, PPI management and dissemination of research outputs.
The UCD Centre of Arthritis Research, established in 2016, promotes early involvement of PPI in research. A PPI co-applicant with RA from the centre’s community of people living with rheumatic disease collaborated on developing the research question, co-writing the application and responding to feedback from reviewers. Post award, the Patient Research Advisor Group (RAG) was established via advertisement through various internal and external channels. Thirteen applications were received. After an information session four members were selected with diverse representation in age, sex, regional representation and rheumatic conditions. The RAG had its official launch in December 2022, with regular quarterly meetings with the scientific leads of the project as part of the PPI design for the project and additional group sessions with the more experienced PPI co-applicant. The group had onboarding training with the national PPI Ignite Network, attended a PPI summer school and received abstract/lay summary training. Communication methods were key to the group, with WhatsApp and email being preferred. Members received university-sponsored email addresses. The group adopted PPI Values and Principles, emphasizing respect, openness, reciprocity and flexibility which supported how the group worked together.
Results: While the RAG at the start felt overwhelmed by the complexity of the research language, over time both the RAG and Researchers have become more comfortable communicating with each other and the research team has improved their lay communication and presentation skills.
The RAG initiated the development of a living glossary.
The RAG provided valuable perspectives and identified PPI gaps in Basic Laboratory Research.
To date the RAG members participated in 2 full advisory meetings, 12 RAG meetings, and multiple individual meetings with PPI co-applicants and took part in over 20 hours of training and now engage in other PPI Involvement opportunities in Rheumatology Research.
The RAG co-developed and disseminated a video on basic research; “A discussion Between Patients and Researchers About PPI in Research.”
RAG members gained a better understanding of their disease pathway, the academic research process, forming a support structure and friendships with other people living with RMDs.
RAG members motivated the research team by reminding them why they were undertaking the research as well as improving lay language skills.
There were key challenges such as calendar alignment for meetings, lack of PPI training in laboratory-based research and access to library subscription academic information resources for PPI members.
Conclusion: The project highlights the importance of ongoing regular collaboration, partnership and involvement of embedded lived experience in laboratory research in a meaningful way. There is a need to support PPI skill development for laboratory-based researchers, such as lay communication and presentations skills. Creating open and timely communication throughout the process to ensure an open space for questions and dialogue is essential. Changes incorporated to improve communication with the research team include:
Earlier meeting preparations with PPI members having the right resources, ensuring members of RAG can ask questions and contribute in a meaningful way.
Recording meetings and training sessions for PPI members to review again if required.
REFERENCES: [1] Ní Shé É, et al. Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects. Research Involvement and Engagement. 2020;6(1):46. doi: 10.1186/s40900-020-00220-7.
[2] Wilson AG, et al, Patient and public involvement in biomedical research: training is not a substitute for relationship building. Annals of the Rheumatic Diseases. 2019;78(11):1607-8. doi: 10.1136/annrheumdis-2019-215595.
[3] Maccarthy J et al, Facilitating public and patient involvement in basic and preclinical health research. PLOS ONE. 2019;14(5):e0216600. doi: 10.1371/journal.pone.0216600.
Acknowledgements: This work was supported by a grant from the Health Research Board (ILP-POR-2022-014).
Disclosure of Interests: None declared.
© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (