Clinical Patient Management System for European Reference Networks: A Case Study

mel_quote

Imagine if you are one of the 30 million patients who suffer from a rare disease. What if the best specialists from across Europe could join their efforts to tackle your rare disease and give you the best highly specialised healthcare?

That’s the purpose of the European Reference Networks (ERNs) and it has just become a reality. 23 ERNs across all rare diseases were approved by the European Commission late December 2016, with another to be approved in the next round. Through these networks, over 370 hospitals and nearly 1,000 specialist centres of expertise will be linked, connecting thousands of experts, researchers and doctors, across 25 EU Member States.

The workings of the ERNs will rely on a common IT platform which will be developed and managed exclusively by Dublin-based OpenApp with support from Vitro Software, another Irish healthcare software business.

Teams of multi-disciplinary medical specialists will meet as a virtual clinical board. Connecting through the dedicated IT platform, they will discuss patients’ details to help diagnose and suggest treatment of rare diseases across Europe. The IT infrastructure will support the confidential exchange of patient information as well as storing clinical data and medical images collected by each ERN. This will become the standard tool for the ERNs.

Mel McIntyre, MD of OpenApp commented at the announcement, “The idea that we can contribute to improved diagnosis of patients with rare disorders is very invigorating for us at OpenApp. We have been developing patient centric information systems for a number of years in collaboration with Irish Health Services.

“We now get to use this knowledge and expertise on a European stage to promote shared cross border healthcare. This is very exciting for us, our partners and friends aswell as European citizens who will benefit from this initiative.” McIntyre concluded.

OpenApp chosen for its expertise

OpenApp is no stranger to facilitating the secure and confidential exchange of patient information across borders. Their IT platform is currently used for many rare diseases in both clinical and non-clinical settings helping patients, clinicians and researchers by providing better, more focused information. OpenApp is developing and supporting registries for many diseases including Cystic Fibrosis, Tay Sachs, Alpha One Antitrypsin, Epidermolysis Bullosa, Atopic Dermatitis and Haemophilia.

In order to deliver a project of this scale, OpenApp enlisted the support of healthcare IT company across Europe including Cineca in Italy, Aridia in Scotland, Vu2Vu in Ireland and Osimis in Belgium.

What’s new about ERNs

What’s new about the ERNs is that it establishes a formal connection of experts between Member States, as recognised by the EU. It inaugurates a structured platform which allows clinicians to pool their knowledge in areas where clinical expertise is rare. The EU have pledged support for the next 5 years to ERNs.

There has been much excitement among clinicians and patient groups at the announcement of the common IT platform, a real step toward increasing cross-border healthcare.

“OpenApp is facilitating our goal of utilising information technology to connect fundamental aspects of care provision in a manner that is patient-centric and clinician and researcher engaged. This is a strategy that erodes borders and allows key information to drive better, more inclusive outcomes, securely, safely and as a supportive community.” said Dr Dimitri Wall, eHealth coordinator ERN Skin.

“Seeing this embedded in a pan-European effort to address rare diseases is exciting and will revolutionise equity of access to high-quality care.” continued Professor Alan Irvine, Crumlin Children’s Hospital Ireland.

Yann Le Cam, CEO of EURORDIS–Rare Diseases Europe, a non-profit alliance of over 700 rare disease patient organisations summarised the importance of the ERNs, “We stand at a point in history – by connecting patients, experts and hospitals through ERNs, we will revolutionise rare disease patients’ access to high-quality care and will be able to measure the improvement of patient health outcomes. This will help to break isolation of patients, tackle the silos that experts work in and help to reduce the current inequality in care reported between rare diseases and between Member States.“

He continued, “EURORDIS and OpenApp have a long standing collaboration and exchange of views; OpenApp has recently become a EURORDIS’ corporate partner; we welcome this important new step in our collaboration to bring innovation of value to patients and doctors.”

The contract is worth €5million to OpenApp over the course of 4 years with OpenApp planning to double its workforce over the next few years.

-ENDS-

About OpenApp

Based in Dublin, OpenApp is a software development and support business focused on the healthcare sector. In business since 2002 and with a staff of over 20, OpenApp have made a strong move into the eHealth, Patient Registry and Patient Health Record since about 2012 with deployments for the European Cystic Fibrosis Society Patient Registry, The Irish Skin Foundation, The National Office for Clinical Audit National Orthopaedic Register, an International Haemophilia Study and more.

OpenApp has developed and supported Health Atlas Ireland for the Irish Health Service Executive since 2006, a collection of Quality Assurance, Health Intelligence and Service evaluation applications for hospital and public health use.

www.openapp.ie

About ERNs

Over 30 million people are affected by a rare disease across Europe. It can be a huge challenge to provide highly specialised treatment or care for patients who have complex and rare conditions. Add to that the scattering of small patient populations across the EU, sometimes in isolated locations where expertise is non existent or can’t be accessed.

The ERNs are themed into 23 disease groupings so every rare disease patient will be part of an ERN. Some of the 23 networks that have been approved include lung, ear nose and throat, neuromuscular, eye, neurological, haematological, neuromuscular, heart, musculoskeletal, autoimmune or vascular diseases.

Dimitri_wall_quote

Latest News

OpenApp achieves ISO27001 Certification

23 December 2022

OpenApp are delighted to announce that we have now attained ISO27001 certification through a huge amount of collaborative effort by our team. This has been a goal of the company for many years, we have always strived to provide the most secure systems and services so achieving this accreditation is a massive affirmation of the work the team has been continuously doing over the years……

Read More
Screenshot of dashboard showing Traffic Incident Management System

Custom Traffic Incident Management System (TIMs)

24 November 2022

Egis Road & Tunnel Operations (ERTO) is the operating agent responsible for managing, recording, and reporting all incidents across the over 1,200 kilometres of motorway and dual carriageways in Ireland. They do this at the Motorway Operations Control Centre (MOCC)…

Read More
ISO27001

OpenApp project with the HSE wins Irish Health Awards 2022 for Public Health Initiative

1 November 2022

OpenApp project in collaboration with the HSE wins Public Health Initiative of the year award at the Irish Healthcare Awards 2022   Now in its 21st year, the Irish Medical Times has announced the winners of the 2022 Irish Healthcare Awards. Two projects evolved by OpenApp in collaboration with the…

Read More

ADDRESS

Avoca House,

189-193 Parnell Street,

Ireland.

D01 H578

 

 

EMAIL

PHONE

Irish Number:

+353 (1) 872 9331

US Number:

+1 (914) 455-0216

Great talk from Prof. Edward Gregg @noca_irl discussing the benefits of registries in intervention and effectiveness research #noca2023

An excellent Impact Report presented by NOCA Exec. Director Collette Tully, detailing the QOL of Patients post arthroplasty surgery benchmarked by country and the impact INOR has had on policy #NOCA2923 #NOCAIrl

2

Load More...

Copyright © 2022 OpenApplications All rights reserved.

OpenApplications Consulting Ltd. Registered in Ireland No. 355595