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Multi-sided platforms in healthcare often focus their business model on standardizing care for wide-spread, chronic diseases. However, there is a lack of knowledge surrounding platform business models enabling individualized care coordination for patients with rare diseases. This paper analyses the development of a complex platform business model addressing Amyotrophic Lateral Sclerosis, a severe neurological disease that requires the coordination of a diverse network of medical specialists, care, and equipment providers. A longitudinal case study examines the platform’s development, focusing subsequently on qualitative and efficient care coordination, care research, and active and direct involvement of patients, as well as establishing two business models, namely, care coordination and care research. We reconstruct how these complex platform business models were configured to improve patient care and care research, thereby creating immediate value for patients and insights for long-term care improvements. The ongoing platform development carefully balances value generation for diverse stakeholders and economic sustainability.

BackgroundEspecially patients older than 65 years undergoing surgery are prone to develop frailty-related complications that may go far beyond the index hospitalization (e.g., cognitive impairment following postoperative delirium). However, aging-relevant information are currently not fully integrated into hospitals’ perioperative processes.MethodsWe introduce a temporal perspective, which focuses on the social construction of time, to better understand existing barriers to the exchange of frailty-related data, targeting complexity research. Our chosen context is perioperative care provided by a tertiary hospital in Germany that has implemented a special track for patients over 65 years old undergoing elective surgery. The research followed a participatory modelling approach between domain and modelling experts with the goal of creating a feedback loop model of the relevant system relationships and dynamics.ResultsThe results of the study show how disparate temporal regimes, understood as frameworks for organizing actions in the light of time constraints, time pressure, and deadlines, across different clinical, ambulant, and geriatric care sectors create disincentives to cooperate in frailty-related data exchanges. Moreover, we find that shifting baselines, meaning continuous increases in cost and time pressure in individual sectors, may unintentionally reinforce – rather than discourage – disparate temporal regimes.ConclusionsTogether, these results may (1) help to increase awareness of the importance of frailty-related data exchanges, and (2) impel efforts aiming to transform treatment processes to go beyond sectoral boundaries, taking into account the potential benefits for frail patients arising from integrated care processes using information technology.