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 Personal View was co-written with the direct partnership of authors with lived experience of rare and complex connective tissue diseases and reports a model that can be adapted to other rare diseases and rheumatological settings, promoting a culture of patient-centred innovation in health-care systems.