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.

医疗保健中的多平台通常将其业务模型集中在标准化针对广泛的慢性疾病的护理上。但是，缺乏围绕平台业务模型的知识，这些模型无法为患有罕见疾病的患者提供个性化的护理协调。本文分析了解决肌萎缩性侧索硬化症（一种严重的神经系统疾病，需要医疗专家，护理和设备提供商的多元化网络的协调）的复杂平台业务模型的开发。纵向案例研究检查了平台的发展，随后重点关注定性和有效的护理协调，护理研究以及患者的积极和直接参与，并建立了两个业务模型，即护理协调和护理研究。我们重构如何配置这些复杂的平台业务模型以改善患者护理和护理研究，从而为患者创造即时价值并为长期护理改善提供见解。正在进行中的平台开发会仔细平衡为不同利益相关者创造的价值和经济的可持续性。