European Reference Networks (ERNs) face a number of challenges to succeed in the long term, a conference on the virtual networks has heard.
Launched just over a year ago, the ERNs use an information technology platform and telemedicine tools to allow healthcare professionals in 900 healthcare units in 313 hospitals across 26 countries to review patient cases. Since their establishment, more than 250 patients have directly benefited from virtual consultations via the network and this figure is expected to grow.
Despite initial successes, however, the fourth conference on ERNs which took place last week, heard there are several challenges which could impact long-term sustainability of the ERNs including funding, awareness among patients and health professionals, support from hospital managers, and the limited human resources available for ERN-related initiatives. Delegates also discussed the need to develop an interest and expertise in rare diseases among younger health professionals.
Alongside challenges, delegates also discussed the future potential of ERNs including in developing clinical guidelines for rare diseases. Work is underway to map existing guidelines and to explore how ERNs can help to fill gaps where no guidance is available. This is being supported through a new European Commission tender on the development of clinical practice guidelines.