Patient partnership model in rare and complex rheumatological conditions: research and beyond in European Reference Network ReCONNET.
WHY IT MATTERS
Patients with rare connective tissue diseases can now directly influence research priorities and treatment approaches through structured partnership roles, rather than having decisions made without their input.
A European network for rare connective tissue diseases has created a new model where patients are treated as equal partners in research and care decisions. Instead of doctors alone deciding what to study and how to treat patients, this network includes patients in every step—from identifying problems to writing research papers together. This approach helps address long diagnostic delays and gaps in care that patients with these rare diseases often face.
Patient partnership model in rare and complex rheumatological conditions: research and beyond in European Reference Network ReCONNET. Abstract: In rare and complex connective tissue diseases, patient partnership is essential to address diagnostic delays, fragmented care, unmet needs, and the research agenda. European Reference Network (ERN) ReCONNET, the network dedicated to rare and complex connective tissue diseases, has implemented a structured and transferable model of patient partnership. Patients contribute to every phase of research and care development: from identifying unmet needs to co-authoring scientific publications. Patient input also shapes educational initiatives and strategic planning. By institutionalising partnership through governance structures and shared decision-making processes, ERN ReCONNET shows that involving patients as equal stakeholders enhances the relevance, quality, and effect of activities. This P Authors: Andersen et al. Journal: The Lancet. Rheumatology MeSH: Humans, Europe, Rare Diseases, Patient Participation, Rheumatic Diseases, Connective Tissue Diseases, Patient-Centered Care
ASK YOUR DOCTOR
Ask your rheumatologist if your hospital or clinic participates in ERN ReCONNET or similar patient partnership programs, and whether you can get involved in shaping your own care decisions.