Business model innovation in a research ecosystem: the case of rare diseases

Purpose Complex systems in scientific research require special efforts to develop and evolve in a sustainable way. Business model innovation has become highly relevant to overcome threats to the sustainability of such systems, and understanding it is key to maintaining and creating new value for the community. The European Joint Programme on Rare Diseases sought to create an effective rare disease research ecosystem for the benefit of patients. The aim of this study is to identify the factors that could influence business model innovation in this environment and to assess the overall potential of the ecosystem. Design/methodology/approach A from Strengths, Weaknesses, Opportunities and Threats (SWOT/TOWS) analysis was carried out to identify these dimensions in the rare disease research ecosystem and the relationships between them. To support the analysis, the authors reviewed the literature to conceptualise business model innovation, particularly in the life sciences research area. Findings Actions on marketing strategies, a customer-centric mindset and a sound legal basis for data sharing and access while accelerating the creation of expert groups and branding are among the key steps to ensure the sustainable viability of such an ecosystem. Originality/value The findings provide a framework for adapting business models to the dynamics of the rare diseases research field. Innovation, supported by the community’s trust in the human capital that has worked for years to build this environment, is key to its sustainability.