Partners / EULAR – European Alliance of Associations for Rheumatology

EULAR – European Alliance of Associations for Rheumatology

The European Alliance of Associations for Rheumatology, EULAR, is a non-profit organisation that represents people with rheumatic and musculoskeletal diseases (RMDs), health professionals in rheumatology, rheumatologists, researchers and scientific societies in the field of rheumatology of all the European nations. EULAR aims to reduce the impact of RMDs on the individual and society and to improve the treatment, prevention and rehabilitation of RMDs.

What is the role of EULAR in Autopix

Building on its extensive expertise in patient-researcher collaboration, EULAR will form the AutoPiX Patient Advisory Panel, composed of expert Patient Research Partners (PRPs) recruited from the EULAR PARE network based on the specific project requirements and expectations. This panel will be crucial in providing valuable patient insights throughout the project, ensuring that research aligns with patients’ priorities and supports the successful translation of findings into clinical practice. PRPs will actively contribute to strategic decision-making, offering key perspectives to enhance scientific understanding and interpretation of results and guide critical project deliverables, including trial design, optimisation of digital tools, and development of communication and dissemination strategies. EULAR will also play a key role in the project’s dissemination, exploitation, and communication activities, ensuring that approaches are tailored to resonate with patients, patient organisations, and the public, maintaining both relevance and accessibility.

Q&A

In what part of the patient journey will your institution most likely contribute?

EULAR will contribute to the entire patient journey in AutoPiX, ensuring that the perspectives, priorities, and needs of people with RMDs are central throughout the project. EULAR’s involvement will be especially important in areas such as ethical considerations and patient data privacy (WP1-2), optimizing the patient user experience and the adoption of novel companion diagnostics (WP3), optimizing the adoption and reducing patient burden with new imaging techniques (WP6), and disseminating research findings to diverse audiences (WP8). Additionally, EULAR will play a key role in developing an educational strategy for both patients and healthcare professionals (WP8). Through the active participation of Patient Research Partners (PRPs), EULAR will ensure that the research remains aligned with patient needs, enhances health literacy, and drives improvements in patient care from the start to the end of the project.

What long-term impacts do you envision of your contribution?

EULAR’s contribution to AutoPiX is expected to have several long-term impacts, including enhanced patient-centred care, improved health literacy, strengthened ethical standards and patient data privacy, broader adoption of novel diagnostics and imaging, effective dissemination of research findings, and educational advancements for both patients and physicians. As a well-established network that supports the education of patients and healthcare professionals, EULAR’s participation will be crucial in promoting the uptake of AutoPiX outcomes within the rheumatology community. Additionally, through its extensive network of RMD user groups across Europe, EULAR is uniquely positioned to advocate for better quality of life for individuals living with these conditions, forging strong alliances with influential groups, EU bodies, and regulators. Overall, EULAR’s involvement will drive lasting improvements in patient-centred healthcare, innovation adoption, and education in the field of RMDs, ultimately leading to improved health outcomes and a better quality of life for patients.

Why is it so important?

EULAR’s work in the project is important because it ensures that patient perspectives are integrated into every phase of research, from design to dissemination. Patient involvement is critical for improving research methodology and outcomes, as it brings invaluable insights that enhance credibility, relevance, and effectiveness. EULAR, with its expertise in patient-researcher collaboration, is uniquely positioned to facilitate this involvement, ensuring that research aligns with the priorities of those affected by RMDs. By establishing the AutoPiX Patient Advisory Panel, EULAR guarantees that patients’ voices are heard, fostering ethical, patient-centred research that leads to practical benefits in daily life. This approach not only enhances the quality of the research but also improves its cost-efficiency and ensures that the findings have a direct impact on patient care. EULAR’s involvement in dissemination and communication also ensures that the project’s outcomes reach the right audiences - patients, healthcare providers, and the public - in a meaningful and accessible way. In essence, EULAR’s role is essential for ensuring that the research remains relevant, ethical, and ultimately beneficial for patients.