Objectives: The aim of this contribution is to outline the development of the eHealth Working Group (WG) of the European Reference Network (ERN) on rare multisystemic vascular diseases (VASCERN). VASCERN is one of the 24 ERNs on Rare Diseases that were launched by the European Commission on March 9, 2017. The ERNs pool highly specialized Healthcare Providers (HCPs) across Europe with expertise on rare or low prevalence complex diseases. VASCERN includes 31 HCPs and is organized in five Rare Diseases WGs (Hereditary Hemorrhagic Telangiectasia, Heritable Thoracic Aortic Diseases, Medium Sized Arteries, Pediatric and Primary Lymphedema, and Vascular Anomalies), a Patient representatives WG, and five thematic WGs on Communication, Ethics, Patient Registries, Training & Education, and eHealth. Methods. The eHealth WG of VASCERN was devised as a necessary element to harmonize the European Policies on eHealth with the various needs of HCPs and to guarantee effective use of eHealth within the ERN. The eHealth WG was developed by a group of HCPs with expertise in the field and was defined in terms of: aims, main themes, prospective actions, and potential impact. Results. The aim of the eHealth WG was defined as "developing guiding principles, technical specifications, cross-border platforms, minimum requirements, as well as strategies for effective use of eHealth in VASCERN". The main themes for eHealth use within the ERN were: patient management/self-management, clinical research, training & education, and communication among HCPs and between patients and HCPs. The WG foresaw several prospective actions including, but not limited to: develop a mobile app that works as a gateway of several services for patients and HCPs; harmonize strategies for shared and effective use of patient management platforms; optimize methods for patient cohorts' definition; coordinate plans for telemedicine and surveillance across the ERN; develop eLearning platforms and resources for training & education for the different target groups (patients, families, physicians, healthcare professionals, and staff). In terms of potential impact, effective use of eHealth within the ERN can translate into: better access to healthcare services (easier, ubiquitous, less time consuming, cheaper, reduced waiting lists); knowledge exchange and spread of expertise across Europe; improved prevention and surveillance and reduced number and cost of emergencies; better patient outcomes and lower burden on caregivers. Conclusions: The eHealth WG can be a powerful enabler of cross border cooperation and effective eHealth use in the context of VASCERN and can leverage the impact of the ERN in terms of improved access to diagnosis, treatment, and high-quality healthcare for patients with rare multisystemic vascular diseases. The eHealth WG of VASCERN has the potential to become a reference framework for ERNs and, in general, a pilot experience for international collaboration on vascular diseases.
The eHealth Working Group of the European Reference Network for rare multisystemic vascular diseases (VASCERN)
Paglialonga A;
2017
Abstract
Objectives: The aim of this contribution is to outline the development of the eHealth Working Group (WG) of the European Reference Network (ERN) on rare multisystemic vascular diseases (VASCERN). VASCERN is one of the 24 ERNs on Rare Diseases that were launched by the European Commission on March 9, 2017. The ERNs pool highly specialized Healthcare Providers (HCPs) across Europe with expertise on rare or low prevalence complex diseases. VASCERN includes 31 HCPs and is organized in five Rare Diseases WGs (Hereditary Hemorrhagic Telangiectasia, Heritable Thoracic Aortic Diseases, Medium Sized Arteries, Pediatric and Primary Lymphedema, and Vascular Anomalies), a Patient representatives WG, and five thematic WGs on Communication, Ethics, Patient Registries, Training & Education, and eHealth. Methods. The eHealth WG of VASCERN was devised as a necessary element to harmonize the European Policies on eHealth with the various needs of HCPs and to guarantee effective use of eHealth within the ERN. The eHealth WG was developed by a group of HCPs with expertise in the field and was defined in terms of: aims, main themes, prospective actions, and potential impact. Results. The aim of the eHealth WG was defined as "developing guiding principles, technical specifications, cross-border platforms, minimum requirements, as well as strategies for effective use of eHealth in VASCERN". The main themes for eHealth use within the ERN were: patient management/self-management, clinical research, training & education, and communication among HCPs and between patients and HCPs. The WG foresaw several prospective actions including, but not limited to: develop a mobile app that works as a gateway of several services for patients and HCPs; harmonize strategies for shared and effective use of patient management platforms; optimize methods for patient cohorts' definition; coordinate plans for telemedicine and surveillance across the ERN; develop eLearning platforms and resources for training & education for the different target groups (patients, families, physicians, healthcare professionals, and staff). In terms of potential impact, effective use of eHealth within the ERN can translate into: better access to healthcare services (easier, ubiquitous, less time consuming, cheaper, reduced waiting lists); knowledge exchange and spread of expertise across Europe; improved prevention and surveillance and reduced number and cost of emergencies; better patient outcomes and lower burden on caregivers. Conclusions: The eHealth WG can be a powerful enabler of cross border cooperation and effective eHealth use in the context of VASCERN and can leverage the impact of the ERN in terms of improved access to diagnosis, treatment, and high-quality healthcare for patients with rare multisystemic vascular diseases. The eHealth WG of VASCERN has the potential to become a reference framework for ERNs and, in general, a pilot experience for international collaboration on vascular diseases.I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.
