Patient-Generated Data as Indicators of Impact of Multidisciplinary and Multi-stakeholder Health Care Systems, in the Age of Personalised Medicine

Abstract Using the case study of the Multiple Sclerosis Care Unit Initiative launched by the European Charcot Foundation, we discuss the need to evaluate the impact of multidisciplinary and multi-stakeholder healthcare systems on patient-reported experience and outcomes for the programming and monit...

Full description

Saved in:
Bibliographic Details
Main Authors: Paola Zaratin, Per Soelberg Sørensen, Óscar Fernández, Giancarlo Comi
Format: Article
Language:English
Published: Adis, Springer Healthcare 2025-02-01
Series:Neurology and Therapy
Online Access:https://doi.org/10.1007/s40120-024-00706-6
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1849772476357148672
author Paola Zaratin
Per Soelberg Sørensen
Óscar Fernández
Giancarlo Comi
author_facet Paola Zaratin
Per Soelberg Sørensen
Óscar Fernández
Giancarlo Comi
author_sort Paola Zaratin
collection DOAJ
description Abstract Using the case study of the Multiple Sclerosis Care Unit Initiative launched by the European Charcot Foundation, we discuss the need to evaluate the impact of multidisciplinary and multi-stakeholder healthcare systems on patient-reported experience and outcomes for the programming and monitoring of brain and neurodegenerative diseases in Europe and beyond. The multiple sclerosis (MS) case study presented in this paper highlights the role of patient-generated data as indicators of the impact of value-based healthcare (VBHC) for all the different neurological diseases whose prodromal symptoms are the first signs of disease progression and therefore instrumental markers for preventive treatments to preserve brain health. A holistic approach to the treatment of MS plays a crucial role in the inclusion and scientific meaning of the patient’s perspective in terms of patient-reported dimension and patient-generated health data (PGHD).
format Article
id doaj-art-e9644ed6880c4bad8252b8550cc4e138
institution DOAJ
issn 2193-8253
2193-6536
language English
publishDate 2025-02-01
publisher Adis, Springer Healthcare
record_format Article
series Neurology and Therapy
spelling doaj-art-e9644ed6880c4bad8252b8550cc4e1382025-08-20T03:02:19ZengAdis, Springer HealthcareNeurology and Therapy2193-82532193-65362025-02-0114243744610.1007/s40120-024-00706-6Patient-Generated Data as Indicators of Impact of Multidisciplinary and Multi-stakeholder Health Care Systems, in the Age of Personalised MedicinePaola Zaratin0Per Soelberg Sørensen1Óscar Fernández2Giancarlo Comi3Scientific Research Department, Italian Multiple Sclerosis Society FoundationDanish Multiple Sclerosis Center, Department Of Neurology, Copenhagen University HospitalDepartment Of Pharmacology And Pediatry, Faculty Of Medicine, University Of Malaga And Biomedical Research Institute Of Malaga (Ibima)Department of Neurorehabilitation Sciences, Casa di Cura IgeaAbstract Using the case study of the Multiple Sclerosis Care Unit Initiative launched by the European Charcot Foundation, we discuss the need to evaluate the impact of multidisciplinary and multi-stakeholder healthcare systems on patient-reported experience and outcomes for the programming and monitoring of brain and neurodegenerative diseases in Europe and beyond. The multiple sclerosis (MS) case study presented in this paper highlights the role of patient-generated data as indicators of the impact of value-based healthcare (VBHC) for all the different neurological diseases whose prodromal symptoms are the first signs of disease progression and therefore instrumental markers for preventive treatments to preserve brain health. A holistic approach to the treatment of MS plays a crucial role in the inclusion and scientific meaning of the patient’s perspective in terms of patient-reported dimension and patient-generated health data (PGHD).https://doi.org/10.1007/s40120-024-00706-6
spellingShingle Paola Zaratin
Per Soelberg Sørensen
Óscar Fernández
Giancarlo Comi
Patient-Generated Data as Indicators of Impact of Multidisciplinary and Multi-stakeholder Health Care Systems, in the Age of Personalised Medicine
Neurology and Therapy
title Patient-Generated Data as Indicators of Impact of Multidisciplinary and Multi-stakeholder Health Care Systems, in the Age of Personalised Medicine
title_full Patient-Generated Data as Indicators of Impact of Multidisciplinary and Multi-stakeholder Health Care Systems, in the Age of Personalised Medicine
title_fullStr Patient-Generated Data as Indicators of Impact of Multidisciplinary and Multi-stakeholder Health Care Systems, in the Age of Personalised Medicine
title_full_unstemmed Patient-Generated Data as Indicators of Impact of Multidisciplinary and Multi-stakeholder Health Care Systems, in the Age of Personalised Medicine
title_short Patient-Generated Data as Indicators of Impact of Multidisciplinary and Multi-stakeholder Health Care Systems, in the Age of Personalised Medicine
title_sort patient generated data as indicators of impact of multidisciplinary and multi stakeholder health care systems in the age of personalised medicine
url https://doi.org/10.1007/s40120-024-00706-6
work_keys_str_mv AT paolazaratin patientgenerateddataasindicatorsofimpactofmultidisciplinaryandmultistakeholderhealthcaresystemsintheageofpersonalisedmedicine
AT persoelbergsørensen patientgenerateddataasindicatorsofimpactofmultidisciplinaryandmultistakeholderhealthcaresystemsintheageofpersonalisedmedicine
AT oscarfernandez patientgenerateddataasindicatorsofimpactofmultidisciplinaryandmultistakeholderhealthcaresystemsintheageofpersonalisedmedicine
AT giancarlocomi patientgenerateddataasindicatorsofimpactofmultidisciplinaryandmultistakeholderhealthcaresystemsintheageofpersonalisedmedicine