A critical evaluation of the EU-virtual consultation platform (CPMS) within the European Reference Network on Rare Endocrine Conditions.

CPMS Endo-ERN rare diseases virtual consultations

Journal

Endocrine connections
ISSN: 2049-3614
Titre abrégé: Endocr Connect
Pays: England
ID NLM: 101598413

Informations de publication

Date de publication:
01 Nov 2022
Historique:
received: 13 09 2022
accepted: 16 09 2022
pubmed: 17 9 2022
medline: 17 9 2022
entrez: 16 9 2022
Statut: epublish

Résumé

In 2017, the European Commission installed 24 European Reference Networks (ERNs) for different categories of rare and complex conditions to facilitate cross-border health care via virtual case consultations in a secure Clinical Patient Management System (CPMS). The ERN for rare endocrine conditions (Endo-ERN) previously reviewed the CPMS, in which they detailed the difficulties physicians encountered with the system and proposed solutions to these that should enable the system to be used to a greater extent. This paper will further the endeavor of the first by performing a critical evaluation of the CPMS, assessing how these suggested improvements have been implemented, and if these have affected the usage of the system. The evaluation involves an assessment of CPMS usage statistics since its conception that takes into consideration the technical updates and the external factors that may have affected these, including data from a review survey following a training workshop for our new healthcare providers (HCPs) added in January 2022. It appears that the improvements made to the system since the first review, in particular the implementation of the Operational Helpdesk, have had a positive effect in increasing CPMS membership; however, the regular usage of the system continues to fluctuate. Several suggestions are made on how to further facilitate the use of CPMS by our members both individually and network-wide, by integrating CPMS activities with other network initiatives and further integrating these into national health care systems as well as looking for ways to measure patient satisfaction from the CPMS discussions outcomes.

Identifiants

pubmed: 36112499
doi: 10.1530/EC-22-0281
pii: EC-22-0281
pmc: PMC9641765
doi:
pii:

Types de publication

Journal Article Review

Langues

eng

Références

Endocrine. 2021 Mar;71(3):549-554
pubmed: 33528763
Endocrine. 2021 Mar;71(3):569-577
pubmed: 33544353
Orphanet J Rare Dis. 2020 Apr 25;15(1):103
pubmed: 32334637
Endocrine. 2021 Mar;71(3):555-560
pubmed: 33512655
Endocrine. 2021 Mar;71(3):561-568
pubmed: 33534110

Auteurs

E K White (EK)

Division of Endocrinology and Centre for Endocrine Tumors, Department of Medicine, Leiden University Medical Centre, Leiden, The Netherlands.
Faculty of Medicine Division 2, Internal Medicine Endocrinology, Leiden University Medical Centre, Leiden, The Netherlands.

I V Wagner (IV)

Department of Endocrinology & Metabolism, Amsterdam University Medical Centre, Amsterdam, The Netherlands.

C van Beuzekom (C)

Division of Endocrinology and Centre for Endocrine Tumors, Department of Medicine, Leiden University Medical Centre, Leiden, The Netherlands.
Faculty of Medicine Division 2, Internal Medicine Endocrinology, Leiden University Medical Centre, Leiden, The Netherlands.

V Iotova (V)

Division of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany.

S F Ahmed (SF)

Office for Rare Conditions, University of Glasgow, Glasgow, UK.
Department of Paediatrics, UMHAT 'Sveta Marina' Varna, Medical University of Varna, Varna, Bulgaria.

O Hiort (O)

Department of Endocrinology & Metabolism, Amsterdam University Medical Centre, Amsterdam, The Netherlands.

A M Pereira (AM)

Faculty of Medicine Division 2, Internal Medicine Endocrinology, Leiden University Medical Centre, Leiden, The Netherlands.

Classifications MeSH