In the context of VASCERN (the European Reference Network for rare multisystemic vascular diseases), the eHealth working group (WG) [1,2] developed a Mobile App to support cross-border healthcare for patients with rare multisystemic vascular diseases, including vascular EDS (vEDS). The app builds on a pilot experience in Italy, during Expo2015, by one of the Centre of Expertise (CE) of VASCERN, chair of the eHealth WG [3]. In its first version, developed during the first year of VASCERN, the App maps all the CEs and Patient Organizations (POs) involved in VASCERN throughout Europe (to date, 37 CEs and 40 POs from across 15 European Countries). More CEs and POs will be mapped in the future. The app provides core information for the patients and caregivers about CEs and POs, according to a standardized dataset. The patient selects the rare disease (RD) of interest among a predefined list and, by using geolocalization, the closest CE and PO are shown on a map. For each structure, the related information is shown. The app will be launched in September 2018 for iOS and Android, and will be available free of charge. Within VASCERN, the eHealth WG together with the Medium Size Artery (MSA) WG are currently investigating the implementation into the Mobile App of Digital Patient Passports (DPPs) for vEDS patients. Future implementation opens for additional functionalities, e.g. contact with preferred healthcare provider (HCP), PO and caregivers; emergency services with geolocalization and alert to the CE and caregivers, prior patient authorization. The pilot experience with the MSA WG is focused on DPPs for patients with vEDS but will serve as a basis for the development of DPPs for all types of EDS patients and several other RDs covered by VASCERN. DPPs can bring along several advantages compared to paper-based ones: increased portability, emergency services, sharable information with GPs, HCP, caregivers; cannot deteriorate with time; can hardly be lost or forgotten; and can include a larger amount of information. Also DPPs can be customized to the patient's needs, profile and context, and they can easily adapt to follow changes that may occur over time. References 1. The European Reference Network in the field of the vascular rare disease. Pini A, Tognola G, N Paglialonga A, Hurard M , Gaetano R, Jondeau G. Aortic Dissection: The true stories. Edi Ermes, 2016. 2. The eHealth Working Group of the European Reference Network for rare multisystemic vascular diseases (VASCERN). Paglialonga A, Gaetano R, Caiani EG, Jondeau G, Pini A. 4th European Congress on eCardiology and eHealth. Nov, 2017 Berlin (Germany) 3. https://play.google.com/store/apps/details?id=it.explorare.app
Development of a Multi-Purpose Mobile App for Patients with EDS
Paglialonga A;
2018
Abstract
In the context of VASCERN (the European Reference Network for rare multisystemic vascular diseases), the eHealth working group (WG) [1,2] developed a Mobile App to support cross-border healthcare for patients with rare multisystemic vascular diseases, including vascular EDS (vEDS). The app builds on a pilot experience in Italy, during Expo2015, by one of the Centre of Expertise (CE) of VASCERN, chair of the eHealth WG [3]. In its first version, developed during the first year of VASCERN, the App maps all the CEs and Patient Organizations (POs) involved in VASCERN throughout Europe (to date, 37 CEs and 40 POs from across 15 European Countries). More CEs and POs will be mapped in the future. The app provides core information for the patients and caregivers about CEs and POs, according to a standardized dataset. The patient selects the rare disease (RD) of interest among a predefined list and, by using geolocalization, the closest CE and PO are shown on a map. For each structure, the related information is shown. The app will be launched in September 2018 for iOS and Android, and will be available free of charge. Within VASCERN, the eHealth WG together with the Medium Size Artery (MSA) WG are currently investigating the implementation into the Mobile App of Digital Patient Passports (DPPs) for vEDS patients. Future implementation opens for additional functionalities, e.g. contact with preferred healthcare provider (HCP), PO and caregivers; emergency services with geolocalization and alert to the CE and caregivers, prior patient authorization. The pilot experience with the MSA WG is focused on DPPs for patients with vEDS but will serve as a basis for the development of DPPs for all types of EDS patients and several other RDs covered by VASCERN. DPPs can bring along several advantages compared to paper-based ones: increased portability, emergency services, sharable information with GPs, HCP, caregivers; cannot deteriorate with time; can hardly be lost or forgotten; and can include a larger amount of information. Also DPPs can be customized to the patient's needs, profile and context, and they can easily adapt to follow changes that may occur over time. References 1. The European Reference Network in the field of the vascular rare disease. Pini A, Tognola G, N Paglialonga A, Hurard M , Gaetano R, Jondeau G. Aortic Dissection: The true stories. Edi Ermes, 2016. 2. The eHealth Working Group of the European Reference Network for rare multisystemic vascular diseases (VASCERN). Paglialonga A, Gaetano R, Caiani EG, Jondeau G, Pini A. 4th European Congress on eCardiology and eHealth. Nov, 2017 Berlin (Germany) 3. https://play.google.com/store/apps/details?id=it.explorare.appI documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.
