TY - JOUR
T1 - Towards values-based healthcare for inherited metabolic disorders
T2 - An overview of current practices for persons with liver glycogen storage disease and fatty acid oxidation disorders
AU - Venema, Annieke
AU - Peeks, Fabian
AU - Rossi, Alessandro
AU - Jager, Emmalie A.
AU - Derks, Terry G.J.
N1 - Funding Information:
The MD‐PhD scholarships of Annieke Venema (MD‐PhD 21‐65), Fabian Peeks (MD‐PhD 16‐24), and Emmalie A. Jager (MD‐PhD 18‐55), are funded by the Junior Scientific Masterclass from the University of Groningen, University Medical Center Groningen. Alessandro Rossi was funded by Associazione Italiana Glicogenosi (Grant/Award Number: 01/2020).
Publisher Copyright:
© 2022 The Authors. Journal of Inherited Metabolic Disease published by John Wiley & Sons Ltd on behalf of SSIEM.
PY - 2022/11
Y1 - 2022/11
N2 - 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.
AB - 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.
KW - fatty acid oxidation
KW - glycogen storage disease
KW - inborn errors of metabolism
KW - value-based healthcare
U2 - 10.1002/jimd.12555
DO - 10.1002/jimd.12555
M3 - Article
C2 - 36088581
AN - SCOPUS:85139041056
SN - 0141-8955
VL - 45
SP - 1018
EP - 1027
JO - Journal of Inherited Metabolic Disease
JF - Journal of Inherited Metabolic Disease
IS - 6
ER -