CPMS–improving patient care in Europe via virtual case discussions

Abstract

Purpose The core task of European Reference Networks (ERNs) is to reduce health care inequalities throughout Europe for all patients with rare and complex conditions. A secure web-based application for virtual consultations, the Clinical Patient Management System (CPMS), was developed by the EU to provide expert specialized care for all these patients. This review analyses the opportunities and difficulties that the implementation of this virtual network implies for physicians as well as for the patients. Methods European Reference Network on Rare Endocrine Conditions (Endo-ERN) installed an Operational Helpdesk (OH) to support their members in using CPMS. The OH initiated several actions to facilitate and increase the usage of CPMS. Satisfaction with the system and reasons for low participation rates in virtual case discussions were analyzed by different surveys. Results The number of CPMS users increased constantly, but the active usage of the system remains insufficient. Main reasons were technical difficulties, lack of time and insufficient awareness about CPMS in experts and patients throughout Europe. Still, outcomes of the virtual discussions are considered useful by involved experts and the discussions have provided topics for educational webinars and research. Conclusions CPMS is a secure system with many advantages compared to previous ways of consulting experts but also difficulties that need to be overcome with future strategies. By facilitating its use and increasing awareness among all relevant European experts and patients, CPMS can help to make the existing expertise available for all patients with rare (endocrine) conditions throughout Europe as it was intended.

Society for Endocrinology UK Guidance on the initial evaluation of a suspected difference or disorder of sex development (Revised 2021)

“…More recently, European networks such as Endo‐ERN and a urology network (eUROGEN) of reference centres for rare conditions provide a forum to promote best practice for these rare conditions. Some networks such as the Scottish DSD network and Endo‐ERN have ongoing surveillance capability through projects such as the Scottish Audit of Atypical Genitalia (SAAG) 9 and EuRRECa 10 that allow continuous monitoring of clinical activity. Professional scientific societies also play an important role and many such as the BSPED and ESPE have a dedicated special interest group for DSD.…”

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

“…To increase the use of CPMS for expert and complex patient care and to reduce barriers for experts to apply the system, an Endo-ERN specific Operational Helpdesk was installed in 2020 to improve user friendliness and help with technical difficulties and implementing CPMS to more HCPs. After offering support through the operational helpdesk, the number of registered users increased to 274 and the active users to 199 [3]. However, Endo-ERN had the highest number of users per year in 2020 in comparison to all other ERNs, yet not the highest number of patient panels.…”

“…Patients and their respective guardians where necessary need to provide informed consent prior to initiation of any discussion of anonymized data with relevant experts in that specific area. The development of the CPMS until 2020 within Endo-ERN was previously reported by Mönig et al [3]. To increase the use of CPMS for expert and complex patient care and to reduce barriers for experts to apply the system, an Endo-ERN specific Operational Helpdesk was installed in 2020 to improve user friendliness and help with technical difficulties and implementing CPMS to more HCPs.…”

COVID-19 and the Rare Disease Organization Response During Pandemic: The ‘Italian Model’

“…For instance, the NRCD-ISS and UNIAMO organized weekly webinars with national and international experts and patient associations to share information and good practices, including telemedicine and home therapy. Following the experience of the European Reference Networks for RDs, clinicians from major hospitals and regional centers were already acquainted with the teleconsulting systems [ 6 ] during the pandemic. ISS guidelines were promptly established to help clinicians using appropriately these new tools [ 7 ].…”