Health-EU Newsletter 223 - Focus

Patients with rare and chronic diseases have a network of specialists at their service – but do they know?

Dr Franz Schaefer of Heidelberg University is the current Chair of the Coordinators of the 24 European Reference Networks (ERNs), a network of experts who help patients with rare or complex diseases who have not been able to get an accurate diagnosis or proper treatment. One of the biggest challenges, says Schaefer, is getting local, regional and national healthcare providers to make ample use of this unique resource.

Can you explain briefly how the ERN works?

Patients can be referred by their doctors to the European Reference Networks for expert advice. The networks are subdivided into areas of specialisation and are made up of international specialists who hold virtual panels on patient cases, exchange information and expertise among themselves and help the doctors in charge of the patient to get an accurate diagnosis or proper care. That’s not because their local healthcare providers are incompetent, but because they are likely dealing with a rare or complex disease that requires specialists who are not likely to be found in their neighbourhood or even in their region, especially if they live in an economically challenged or isolated area.

How does a patient go about asking for your expert help?

The primary or secondary health providers refer their patients to their regional or national network of specialists, or contacts the national ERN contact point on their behalf. That is, however, provided they have a network of regional or national experts they can turn to. Not every Member State does.

The biggest current problem is that countries with the greatest needs are the countries with the least access to the assistance we can provide them. What's more, in many countries there is a lack of health information available to patients in their own language. ERNs are working to change that. Our own network already has a set of info documents available on its website that have been translated into all other EU languages.

You are offering expert advice at the highest level. Why wouldn’t a Member State want to take advantage of that?

Well, one of their big concerns is about the expense. It shouldn't be. The ERNs can actually save them money. They hold consultations online, which saves the patient the expense and burden of travelling,and also saves public resources, and keeps healthcare funds in the home countries. It's also worth mentioning that experts working for the ERNs volunteer their time – we are currently not paid for our services.

Are patient organisations involved in trying to get national networks to use the ERN?

Absolutely. In fact, they were the real force behind setting up the ERNs. The patient organisation EURORDIS was one of the main drivers.

The ERN is only in its second year. Is it too early for success stories?

No, in fact, we’ll be sharing success stories when our experts meet this November. Some of them concern patients with rare forms of epilepsy, which can be difficult to diagnose. We were able to see the patients through virtual consultations and they are now being treated and getting the help they need. That's extremely gratifying.

What plans do you have for the future?

We will be working hard to make ERNs more accessible, and that may involve using digital health technology to greater advantage. We envision using digital to monitor and follow-up patients as well. ERNs are in their infancy. We're proud of what we've accomplished, but we know that there is scope – and need – for growth.

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