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Quadruple Decision Making for Parkinson’s Disease Patients: Combining Expert Opinion, Patient Preferences, Scientific Evidence, and Big Data Approaches to Reach Precision Medicine

Clinical decision making for Parkinson’s disease patients is supported by a combination of three distinct information resources: best available scientific evidence, professional expertise, and the personal needs and preferences of patients. All three sources have clear value but also share several i...

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Autores principales: van den Heuvel, Lieneke, Dorsey, Ray R., Prainsack, Barbara, Post, Bart, Stiggelbout, Anne M., Meinders, Marjan J., Bloem, Bastiaan R.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: IOS Press 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7029360/
https://www.ncbi.nlm.nih.gov/pubmed/31561387
http://dx.doi.org/10.3233/JPD-191712
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author van den Heuvel, Lieneke
Dorsey, Ray R.
Prainsack, Barbara
Post, Bart
Stiggelbout, Anne M.
Meinders, Marjan J.
Bloem, Bastiaan R.
author_facet van den Heuvel, Lieneke
Dorsey, Ray R.
Prainsack, Barbara
Post, Bart
Stiggelbout, Anne M.
Meinders, Marjan J.
Bloem, Bastiaan R.
author_sort van den Heuvel, Lieneke
collection PubMed
description Clinical decision making for Parkinson’s disease patients is supported by a combination of three distinct information resources: best available scientific evidence, professional expertise, and the personal needs and preferences of patients. All three sources have clear value but also share several important limitations, mainly regarding subjectivity, generalizability and variability. For example, current scientific evidence, especially from controlled clinical trials, is often based on selected study populations, making it difficult to translate the outcome to the care for individual patients in everyday clinical practice. Big data, including data from real-life unselected Parkinson populations, can help to bridge this information gap. Fine-grained patient profiles created from big data have the potential to aid in identifying therapeutic approaches that will be most effective given each patient’s individual characteristics, which is particularly important for a disorder characterized by such tremendous interindividual variability as Parkinson’s disease. In this viewpoint, we argue that big data approaches should be acknowledged and harnessed, not to replace existing information resources, but rather as a fourth and complimentary source of information in clinical decision making, helping to represent the full complexity of individual patients. We introduce the ‘quadruple decision making’ model and illustrate its mode of action by showing how this can be used to pursue precision medicine for persons living with Parkinson’s disease.
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spelling pubmed-70293602020-03-04 Quadruple Decision Making for Parkinson’s Disease Patients: Combining Expert Opinion, Patient Preferences, Scientific Evidence, and Big Data Approaches to Reach Precision Medicine van den Heuvel, Lieneke Dorsey, Ray R. Prainsack, Barbara Post, Bart Stiggelbout, Anne M. Meinders, Marjan J. Bloem, Bastiaan R. J Parkinsons Dis Research Report Clinical decision making for Parkinson’s disease patients is supported by a combination of three distinct information resources: best available scientific evidence, professional expertise, and the personal needs and preferences of patients. All three sources have clear value but also share several important limitations, mainly regarding subjectivity, generalizability and variability. For example, current scientific evidence, especially from controlled clinical trials, is often based on selected study populations, making it difficult to translate the outcome to the care for individual patients in everyday clinical practice. Big data, including data from real-life unselected Parkinson populations, can help to bridge this information gap. Fine-grained patient profiles created from big data have the potential to aid in identifying therapeutic approaches that will be most effective given each patient’s individual characteristics, which is particularly important for a disorder characterized by such tremendous interindividual variability as Parkinson’s disease. In this viewpoint, we argue that big data approaches should be acknowledged and harnessed, not to replace existing information resources, but rather as a fourth and complimentary source of information in clinical decision making, helping to represent the full complexity of individual patients. We introduce the ‘quadruple decision making’ model and illustrate its mode of action by showing how this can be used to pursue precision medicine for persons living with Parkinson’s disease. IOS Press 2020-01-13 /pmc/articles/PMC7029360/ /pubmed/31561387 http://dx.doi.org/10.3233/JPD-191712 Text en © 2020 – IOS Press and the authors. All rights reserved https://creativecommons.org/licenses/by-nc/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial (CC BY-NC 4.0) License (https://creativecommons.org/licenses/by-nc/4.0/) , which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Research Report
van den Heuvel, Lieneke
Dorsey, Ray R.
Prainsack, Barbara
Post, Bart
Stiggelbout, Anne M.
Meinders, Marjan J.
Bloem, Bastiaan R.
Quadruple Decision Making for Parkinson’s Disease Patients: Combining Expert Opinion, Patient Preferences, Scientific Evidence, and Big Data Approaches to Reach Precision Medicine
title Quadruple Decision Making for Parkinson’s Disease Patients: Combining Expert Opinion, Patient Preferences, Scientific Evidence, and Big Data Approaches to Reach Precision Medicine
title_full Quadruple Decision Making for Parkinson’s Disease Patients: Combining Expert Opinion, Patient Preferences, Scientific Evidence, and Big Data Approaches to Reach Precision Medicine
title_fullStr Quadruple Decision Making for Parkinson’s Disease Patients: Combining Expert Opinion, Patient Preferences, Scientific Evidence, and Big Data Approaches to Reach Precision Medicine
title_full_unstemmed Quadruple Decision Making for Parkinson’s Disease Patients: Combining Expert Opinion, Patient Preferences, Scientific Evidence, and Big Data Approaches to Reach Precision Medicine
title_short Quadruple Decision Making for Parkinson’s Disease Patients: Combining Expert Opinion, Patient Preferences, Scientific Evidence, and Big Data Approaches to Reach Precision Medicine
title_sort quadruple decision making for parkinson’s disease patients: combining expert opinion, patient preferences, scientific evidence, and big data approaches to reach precision medicine
topic Research Report
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7029360/
https://www.ncbi.nlm.nih.gov/pubmed/31561387
http://dx.doi.org/10.3233/JPD-191712
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