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Towards values‐based healthcare for inherited metabolic disorders: An overview of current practices for persons with liver glycogen storage disease and fatty acid oxidation disorders

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...

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Detalles Bibliográficos
Autores principales: Venema, Annieke, Peeks, Fabian, Rossi, Alessandro, Jager, Emmalie A., Derks, Terry G. J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley & Sons, Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9828459/
https://www.ncbi.nlm.nih.gov/pubmed/36088581
http://dx.doi.org/10.1002/jimd.12555
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author Venema, Annieke
Peeks, Fabian
Rossi, Alessandro
Jager, Emmalie A.
Derks, Terry G. J.
author_facet Venema, Annieke
Peeks, Fabian
Rossi, Alessandro
Jager, Emmalie A.
Derks, Terry G. J.
author_sort Venema, Annieke
collection PubMed
description 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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spelling pubmed-98284592023-01-10 Towards values‐based healthcare for inherited metabolic disorders: An overview of current practices for persons with liver glycogen storage disease and fatty acid oxidation disorders Venema, Annieke Peeks, Fabian Rossi, Alessandro Jager, Emmalie A. Derks, Terry G. J. J Inherit Metab Dis Iciem 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. John Wiley & Sons, Inc. 2022-09-30 2022-11 /pmc/articles/PMC9828459/ /pubmed/36088581 http://dx.doi.org/10.1002/jimd.12555 Text en © 2022 The Authors. Journal of Inherited Metabolic Disease published by John Wiley & Sons Ltd on behalf of SSIEM. https://creativecommons.org/licenses/by/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Iciem
Venema, Annieke
Peeks, Fabian
Rossi, Alessandro
Jager, Emmalie A.
Derks, Terry G. J.
Towards values‐based healthcare for inherited metabolic disorders: An overview of current practices for persons with liver glycogen storage disease and fatty acid oxidation disorders
title Towards values‐based healthcare for inherited metabolic disorders: An overview of current practices for persons with liver glycogen storage disease and fatty acid oxidation disorders
title_full Towards values‐based healthcare for inherited metabolic disorders: An overview of current practices for persons with liver glycogen storage disease and fatty acid oxidation disorders
title_fullStr Towards values‐based healthcare for inherited metabolic disorders: An overview of current practices for persons with liver glycogen storage disease and fatty acid oxidation disorders
title_full_unstemmed Towards values‐based healthcare for inherited metabolic disorders: An overview of current practices for persons with liver glycogen storage disease and fatty acid oxidation disorders
title_short Towards values‐based healthcare for inherited metabolic disorders: An overview of current practices for persons with liver glycogen storage disease and fatty acid oxidation disorders
title_sort towards values‐based healthcare for inherited metabolic disorders: an overview of current practices for persons with liver glycogen storage disease and fatty acid oxidation disorders
topic Iciem
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9828459/
https://www.ncbi.nlm.nih.gov/pubmed/36088581
http://dx.doi.org/10.1002/jimd.12555
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