Background: Engaging people with lived experience in health and medical research improves quality, relevance, and translation, and is increasingly required by funders. Despite this, many rheumatology studies lack meaningful consumer involvement. The sector—including funding agencies, ethics committees, institutions, and publishers—can address this gap by mandating or supporting consumer engagement in grants and providing researchers with practical tools for meaningful collaboration. A consumer-driven approach to health research recognises consumers as key stakeholders whose lived experiences enhance the relevance and impact of research, ensuring outcomes prioritise those at risk of or living with arthritis and related conditions. Guided by evidence-based best practices, including the 2023 updated EULAR recommendations for involving Patient Research Partners, Arthritis Australia, Australia’s peak arthritis body, initiated a project to enhance its National Grants Program and external partnerships (the Program) to advance consumer-driven arthritis research in Australia.

Objectives: Arthritis Australia, in partnership with Research Australia and the Australian Catholic University (ACU), conducted a comprehensive review of its National Research Program. The project aimed to gather stakeholder insights to develop enhanced program guidelines, processes, and consumer-driven approaches, improving the Program’s reach, impact, value and engagement with the Australian arthritis research sector.

Methods: An online survey to gather perspectives on consumer involvement in research, priority areas, and preferred engagement methods of people with lived experience of arthritis (n=52) was distributed to Arthritis Australia consumer groups in August 2024. This was followed by three virtual 120-minute workshops with stakeholder groups: consumers (n=10), clinician researchers (n=20), and governance stakeholders (n=12). Data were analysed to develop actionable recommendations for the Arthritis Australia program.

Results: Survey respondents prioritised valuing and respecting consumer contributions and highlighted priority-setting, research governance, and research translation as key areas for involvement. Tasks such as designing, conducting, and analysing studies were considered less critical but still require consumer input. Consumers emphasised the importance of capacity building, calling for resources to enhance collaboration skills for both researchers and consumers. The need for flexible engagement methods, such as surveys and focus groups emerged as preferred methods. Improving quality of life, public health, and scientific innovation were identified as research priorities. Workshops revealed that researchers supported clear consumer definitions, diverse representation, and capacity-building initiatives but raised concerns about funding constraints for meaningful engagement. Consumers called for long-term relationships with research teams, diverse and accessible opportunities, and training to reduce participation barriers, along with remuneration to recognise their contributions. Governance stakeholders emphasised the importance of early and proportional consumer involvement, streamlined grant processes, and structured researcher-consumer pathways. Across all groups, capacity building, clear communication, and resource allocation were identified as critical to advancing consumer engagement.

Conclusion: Arthritis Australia and other funders are well positioned to lead enhanced consumer-driven research initiatives. Australian arthritis consumers demonstrate strong readiness to engage across all research stages, particularly in shaping research questions, translating findings, and communicating outcomes, and must be recognised appropriately for their contributions. Researchers also show readiness but face challenges such as limited funding and resources for early consumer engagement, with particular types of research, including discovery science, needing specific support to engage consumers earlier and to demonstrate impact. Addressing these barriers and aligning with evidence-informed best practices in Arthritis Australia’s Program and broader partnerships can enhance the value and competitiveness of Australian arthritis research.

REFERENCES: [1] Adams, Claire, Elsa-Lynn Nassar, Julia Nordlund, Cassidy Dal Santo, Danielle B Rice, Vanessa Cook, Jill T Boruff and Brett D Thombs, “Engagement of people with lived experience in studies published in high-impact rheumatology journals: a meta-research review”, Lancet Rheumatology 6, no. 9 (2024): https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(24)00165-6/fulltext?uuid=uuid%3A2f35f8e1-a850-4893-8267-457a830d36bb .

[2] de Wit, M., K. Aouad, M. Elhai, et al. “EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update.” Annals of the Rheumatic Diseases 83 (2024): 1443-1453.

Acknowledgements: The authors would like to thank all the consumers, researchers, and policy makers who generously contributed their time and insights to this work.

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 ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ). Neither EULAR nor the publisher make any representation as to the accuracy of the content. The authors are solely responsible for the content in their abstract including accuracy of the facts, statements, results, conclusion, citing resources etc.