What Is a European Reference Network?
Why Do We Need European Reference Networks?
It can be a challenge to provide highly specialised treatment or care for patients who have complex conditions. This is especially true when the prevalence of such conditions is low, as is the case for rare diseases. The challenge is due to both the scarcity of expertise and to the scattering of small patient populations across the EU, sometimes in isolated locations where expertise does not exist or cannot be accessed.
Collaboration between EU Member States can support the pooling of expertise and help to ensure that knowledge is shared between healthcare professionals across borders. By ensuring doctors have the most recent and expert knowledge possible, they will be better informed to make decisions on how to adapt treatment and care pathways. This in turn contributes to improvements in clinical outcomes and the quality of life of people living with a rare disease.
What Is a European Reference Network?
European Reference Networks (ERNs) create a clear governance structure for knowledge sharing and care coordination across the EU. They are networks of centres of expertise, healthcare providers and laboratories that are organised across borders. A centre of expertise could be a clinical team, a medical centre or a hospital and must be formally accredited by its Member State.
It is unfeasible to create a separate ERN for every one of the over 6000 rare diseases that exist. ERNs should therefore be organised by groups of rare diseases. This grouping of diseases does not prevent a patient from being able to go to a disease-specific centre of expertise, nor from benefiting from the expertise of several ERNs.
Member States remain primarily responsible for the organisation and delivery of their healthcare; national participation in ERNs is therefore voluntary. When a healthcare centre does not have the required level of expertise to be part of an ERN as a centre of expertise it can participate as an associated or collaborative centre.
Due to the low prevalence and complexity of rare diseases, as well as to the nature of small and scattered patient populations, the system of ERNs that is being established can bring real added value to rare disease patients; ERNs aim to provide healthcare professionals with access to expertise that they may not be able to access in their country.
If no centre of expertise exists for a specific disease in their country, patients can still benefit from the knowledge that their doctor can get from centres of expertise in other countries. ERNs provide the structure that facilitates a doctor's ability to access such knowledge across borders.
ERNs promote the sharing and mobility of expertise, rather than the movement of patients themselves across borders. Separately, the Directive on Patients' Rights in Cross-Border Healthcare allows patients to access healthcare services abroad and to be reimbursed by their home country at the level foreseen within the national "basket of benefits".
EURORDIS aims to ensure that every rare disease patient, including the undiagnosed, will be covered by one ERN so that every person living with a rare disease finds a home within the European system of ERNs.
Lene Jensen, patient advocate and Director of Rare Diseases Denmark, commented, "ERNs offer doctors a structure for sharing experiences and knowledge in a much more efficient way. Instead of relying on doctors' personal contacts, ERNs will provide an organised search system so that doctors can find the right information at the right time." She added, "The effectiveness of the system is dependent on EU Member States signing up their centres of expertise to the ERNs. As patients, we must encourage this strongly because it will benefit us hugely".
Dissemination of knowledge through ERNs could also help to establish shared information databases and in turn support the development of best practice protocols. This could contribute to the 'levelling up' of the expertise of healthcare professionals, who can benefit from the experience of their counterparts in other EU Member States. These information databases could also be used to further research in rare diseases.
What Role Can Patient Organisations Play in ERNs?
Patient organisations are not legally required to participate in the governance and evaluation of ERNs but ERNs are required to demonstrate patient-centric care and patient empowerment. Patient involvement in ERNs is yet to be formalised.
The Policy Framework
The EU Directive on Patients' Rights in Cross-Border Healthcare requires the EU Commission to support the development of ERNs throughout Member States. The Delegated Decision sets out the criteria that networks must fulfil to become ERNs and that centres of expertise must fulfil to join an ERN, while the Implementing Decision sets out the criteria for establishing and evaluating ERNs and their Members.
Stay tuned for a second EURORDIS eNews article in early 2015 on the next steps in the implementation of ERNs.
Eva Bearryman, Junior Communications Manager, EURORDIS