Actions and Detail Panel
The Patient Voice in European Reference Networks - Information Meeting
Fri 7 April 2017, 09:30 – 12:30
GRDO – Rare Diseases Ireland - Patient Information Meeting
The Patient Voice in European Reference Networks (ERNs); the Role for Patients in European Patient Advocacy Groups (ePAGs).
09.30 - Registration pick-up
10.00 - Chair - Opening Remarks
Avril Daly, CEO, Retina International, VP EURORDIS and member of ERN-EYE
10.10 - What is an ERN and why are they critical to the delivery of coordinated care for Rare Diseases
Professor Eileen Treacy, Clinical Lead for National Clinical Programme for Rare Diseases and Irish Representative on the ERN Board of Member States
10.35 - European Patient Advocacy Groups – ePAGs – What to expect and what is expected – the Patient Representative Role
Dr. Avril Kennan, Head of Research, Debra Ireland and member of ERN-SKIN
11.00 - Discussion
11.30 - Networking - Tea & Coffee
What are European Reference Networks?
European Reference Networks (ERNs) are virtual networks involving multi-disciplinary teams of healthcare providers across Europe; they link centres of expertise and professionals in different countries to share knowledge and identify where patients should go when expertise is unavailable in their home country. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment and concentrated knowledge and resources. Twenty-four ERNs, working across a range of disease areas, were launched on March 1st 2017; they involve more than 900 highly-specialised healthcare units from over 300 hospitals in 26 Member States.
What are European Patient Advocacy Groups and Patient Representatives?
Patients and patient organisations are central to the decision making processes and successful delivery of ERNs. To ensure a unified voice is heard European Patient Advocacy Groups (ePAGs) for each ERN disease area have been established. ePAGs bring together elected patient representatives and affiliated patient organisations who will ensure that the patient voice is heard throughout the ERN development process. ePAG patient representatives have a mandate to represent ePAG member organisations. They liaise with these organisations to ensure true and equitable representation of the patient voice by participating in the Board and sub-clinical committees of their respective ERN.
What is the EU doing to support healthcare delivery across Europe?
Health systems in the European Union aim to provide high-quality, cost-effective care. This is particularly difficult with rare or low-prevalence complex diseases or conditions. Between 5,000 and 8,000 rare diseases affect the daily lives of around 30 million people in the EU. To improve the delivery of care to those affected by rare diseases across Europe, European Reference Networks (ERNs) have been established, thereby helping to pool scarce resources that are currently fragmented across individual EU countries. Joint action helps patients and professionals share expertise and information across borders. Specific measures include:
ensuring that rare diseases are adequately coded and traceable in all health information systems
supporting national plans for rare diseases in EU member countries
strengthening European-level cooperation and coordination
creating European reference networks linking centres of expertise and professionals in different countries to share knowledge and identify where patients should go when expertise is unavailable in their home country
encouraging more research into rare diseases
evaluating current screening population practices
supporting rare diseases registries and providing a European Platform for rare diseases registration.
ERNs are designed to provide collaboration that goes beyond treatment
Development of guidelines, training the sharing of knowledge;
Facilitation of large clinical studies to improve understanding of diseases;
Development of new drugs and medical devices by gathering a large pool of patient data;
Development of new care models, eHealth solutions and tools.