21 September 2023

A high level of expertise and excellently organized and secured quality of care and safety: this is how the evaluation report on European Reference Networks (ERNs), published this week, assesses the Radboudumc input. Within ERNs, European centers of expertise work closely together in the field of rare diseases, including case discussions. Our umc participates in 18 ERNs. In rare urological and oncological diseases, we coordinate European network activities.

The international, independent audit committee gives Radboudumc a near-maximum score on seven key subtopics. These include patient-centered care, knowledge exchange, research & education and general competence, experience and care outcomes. Quality & safety, human resources (HR) and organizational aspects also receive high ratings. According to the assessment, Radboudumc has excellent cooperation with its European partner hospitals and used appropriate e-health systems to provide remote care. This makes teleconsultation possible, for example, allowing healthcare professionals to discuss cases internationally. 

Kudos also go to the organization and assurance of quality and safety. The audit team further states that the internationally agreed guidelines are well followed and appreciates the high level of expertise of our healthcare professionals.

Areas for improvement

Of course, there is always room for improvement: although the use of digital facilities and online tools receives a good rating, the use of the Clinical Patient Management System (CPMS) could be improved, according to the evaluation report. Through this CPMS, practitioners submit cases to colleagues in the other participating hospitals. "Our rare disease experts are regularly consulted through this platform and vice versa," explains policy advisor for centers of expertise and ERNs Yvonne van Vugt. "But I hear back from healthcare providers that it takes a lot of time and administration and that the CPMS is not perceived as user-friendly. In many cases there is no remuneration in return: a lot of ERN work has to be done in 'your own time'. So then you would like a handy tool. Fortunately, a new, likely much more user-friendly, CPMS is coming next year." 

Another point for improvement concerns services for international, non-Dutch-speaking patients. This point will be taken up further together with the RIPO (Radboud International Patient Office).

Praising words

In general, the audit team is very complimentary about all the efforts made by the Radboudumc for the ERNs. This certainly also applies to GENTURIS and eUROGEN, the two networks coordinated from our umc. Impressive quality of the network, highly specialized and passionate professionals and excellent cooperation with other ERNs, institutions, patient representation, patient organizations and scientific associations, the report states. Special kudos go to the active involvement of patients.

The evaluation shows that not all participating centers are equally advanced: the level difference between countries and individual centers is quite large, say the rapporteurs. 

Good path

European regulations require that ERNs including all participants be evaluated every five years. "For the moment, the evaluation report is proof that we are on the right track," says Yvonne van Vugt. "A nice boost for everyone who is committed to the ERNs."

Radboudumc is involved in 18 of the 24 European reference networks. Four recently started ERN participations were left omitted from the evaluation.

What is in it for patients?

What use does an ERN have for patients? The list below shows what ERN GENTURIS has yielded so far, either directly within healthcare or indirectly through, for example, knowledge sharing. ERN GENTURIS is coordinated by Radboudumc professor and internist-oncogeneticist Nicoline Hoogerbrugge. For other ERNs the numbers will differ, but many themes will be the same. 

  • approximately 9000 patients (annually) seen within the entire ERN 
  • multidisciplinary advising 200 complex European patients (with active input from Radboudumc) 
  • 7 new European guidelines
  • 13 existing guidelines reviewed and adopted ERN-wide
  • description 7 new care pathways to guide physicians 
  • 46 online lectures for healthcare providers, available free of charge as continuing education
  • continuing education courses for clinical geneticists and medical oncologists
  • 8 joint, successful scientific research projects (in rare diseases often only possible through network cooperation). 

About ERNs 

European Reference Networks are virtual networks of hospitals from across Europe focused on rare diseases. Through ERNs, patients can access expert expertise and care more frequently and quickly. The participating centers of expertise join forces in terms of expertise, guideline development, education, training, continuing education and innovation, scientific research, clinical trials and registration.

More information about the Radboudumc-ERNs can be found here.

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