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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...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
John Wiley & Sons, Inc.
2022
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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. |
format | Online Article Text |
id | pubmed-9828459 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | John Wiley & Sons, Inc. |
record_format | MEDLINE/PubMed |
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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