Hospital administrators as forgotten partners in rare disease care: a call to action by the international hospital federation’s global rare pediatric disease network

Abstract

Abstract Background The global public health burden of rare diseases has become an increasingly discussed topic, and its societal impact cannot be overstated. While it may seem counterintuitive to discuss broad healthcare and public health impact in the context of rarity, taken together, over 400 million people worldwide are estimated to live with a rare disease. Over half of people living with a rare disease are children. Providing robust and comprehensive services to the rare disease community requires coordinated efforts of numerous experts and partners. Globally, there are many initiatives focused on improving the lives of people living with a rare disease. Most of these networks and organizations are region or country based and have historically centered on three focal areas: research; provision of education, support, and/or information; and direct clinical care. While all these efforts recognize the importance of a coordinated system of partners across a spectrum of disciplines to improve care for the rare disease community, one group has been largely untapped: hospital administrators and leadership. To address this gap, the International Hospital Federation (IHF) convened the Global Rare Pediatric Disease Network (GRPDN), composed of hospital leaders from around the world. To assess how hospital leadership can assist in providing the infrastructure for improving care for patients and families living with a rare disease, the GRPDN created a survey to gather feedback on hospital administrators’ perspectives on needed efforts to improve global rare disease care. Results The survey identified five themes: increased public awareness of rare diseases and support for families, diagnostic management and treatment guidelines, lifelong, multidisciplinary care, data and research, and funding. Conclusions Until recently, hospital leadership has been an untapped partner in addressing challenges faced by rare disease patients, and they are uniquely positioned to bridge existing gaps. The GRPDN will continue to focus on identifying practical strategies that hospital leaders—regardless of resource level—can implement to improve care for children living with a rare disease.

Keywords

• Pediatric rare disease
• Hospital administration
• International