期刊
JOURNAL OF INHERITED METABOLIC DISEASE
卷 45, 期 6, 页码 1018-1027出版社
WILEY
DOI: 10.1002/jimd.12555
关键词
fatty acid oxidation; glycogen storage disease; inborn errors of metabolism; value-based healthcare
资金
- Associazione Italiana Glicogenosi [01/2020]
- University of Groningen, University Medical Center Groningen [MDPhD 21-65, MD-PhD 16-24, MD-PhD 18-55]
Value-based healthcare aims to achieve better outcomes for patients, improve quality of care, and reduce costs. Current practices primarily focus on common diseases, but there are challenges when applying these strategies to rare diseases.
Value-based healthcare (VBHC) intends to achieve better outcomes for patients, to improve quality of patient care, with reduced costs. Four dimensions define a model of intimately related value-pillars: personal value, allocative value, technical value, and societal value. VBHC is mostly applied in common diseases, and there are fundamental challenges in applying VBHC strategies to low volume, high complex healthcare situations, such as rare diseases, including inherited metabolic disorders. This article summarizes current practices at various academical domains (i.e., research, healthcare, education, and training) that (aim to) increase values at various value-pillars for persons with liver glycogen storage diseases or fatty acid oxidation disorders and their families. Future perspectives may include facilitating virtual networks to function as integrated practice units, improving measurement of outcomes, and creating information technology platforms to overcome the ethical, legal, societal, and technical challenges of data sharing for healthcare and research purposes.
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