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

Abstract

In 2017, the European Commission installed 24 European Referenc e Networks (ERNs) for different categories of rare and complex conditions to facilitat e cross-border health care via virtual case consultations in a secure Clinical Patient Man agement System (CPMS). The ERN for rare endocrine conditions (Endo-ERN) previously reviewe d 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 evalu ation 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 technica l updates and the external factors that may have affected these, including data from a revi ew 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 CP MS by our members both individually and network-wide, by integrating CPMS activities w ith 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 outco mes.

Keywords

• endo-ern
• cpms
• rare diseases
• virtual consultations