Update on European Reference Networks (ERNs)

2016 held the first call for European Reference Networks (ERNs) with the first proposals submitted in June. Under the leadership of Prof. Chris Chapple, Secretary General of the European Association of Urology (EAU) and Consultant Urological Surgeon at Sheffield Teaching Hospitals NHS Foundation Trust, a proposal to set up an ERN for rare and complex urogenital diseases and conditions (eUROGEN) was submitted and has successfully passed the first evaluation stage by the European Commission. Five years since the publication of the Directive on the Application of Patients’ rights in cross-border healthcare (Directive 2011/24/EU), the ERN concept is finally becoming a reality.

ERNs are an exciting new form of cooperation at European level between healthcare providers with specialised expertise with the aim of improving care for patients with rare diseases or complex conditions. eUROGEN aims to improve diagnosis, create more equitable access to high quality treatment and care for patients with rare urogenital diseases and complex conditions needing highly specialised surgery. eUROGEN has worked with the EAU in close partnership with all national European urological societies in the development of the proposal.

eUROGEN is comprised of 3 work streams (WS), each with a leader with expertise in this field. Focusing on diagnosis and treatment and 'ensuring continuity of care from childhood throughout life' the WS are structured with a geographical spread across Member States as follows:

• WS1- rare uro-recto-genital congenital anomalies, led by Prof. Wout Feitz from Radboudumc in the Netherlands;
• WS2 – complex functional urogenital conditions requiring highly specialised surgery, led by Prof. Margit Fisch from Universitätsklinikum Hamburg-Eppendorf, Germany
• WS3 - rare urogenital tumours, led by Mr Vijay Sangar from The Christie NHS Foundation Trust, UK

Continuity of CarePatients have reported a lack of adequate care when transitioning from paediatric to adult urogenital care. The three WS ensure that as many of our patients as possible can receive high quality specialist care from birth through to the end of life. Processes will be put into place to transfer the care of these patients from paediatric to adult specialists and European virtual multidisciplinary team meetings will be used for case discussions and recommendations for on-going care. We have listened to the views of patients who prefer highly specialised urogenital surgery and treatment to take place in a few centres of excellence by highly trained and experienced consultants and surgeons. This centralised approach is cost effective and provides the best possible outcomes, speeding up diagnosis and improving survival and quality of life - this is particularly pertinent for penile and testis cancer and urethral stricture disease.

The role of patient organisations is critical to the successful development of the ERNs and eUROGEN has worked with a number of them to support the structure and the development of the application. Furthermore, EURORDIS initiated the European Patient Advisory Groups (ePAGs) to support meaningful patient participation in ERNs and eUROGEN looks forward to collaborating with the Urogenital ePAG group over the coming months.

Current StatuseUROGEN is joined by another 23 ERNs, which also submitted proposals to the European Commission in other clinical areas. Currently, the ERN proposals are being reviewed and independently assessed according to formal procedures laid down by the European Commission. The successful ERNs should be formally approved by the end of this year.

With the ERN proposals now submitted, implementation of the first ERNs becomes ever closer and several relevant activities are converging:

• The Tender concerning the study on the services to be provided by the ERNs and their members, awarded to PricewaterhouseCoopers, will hold its final workshop on 27 September, and will shortly after deliver its final outputs (including a proposed catalogue of healthcare services to be provided by the future ERNs, along with cost drivers). Michelle Battye (EAU EU Policy Coordinator) attends these workshops on behalf of eUROGEN.
• 19th July was the deadline for ‘Requests to Participate’ in the Tender for the ERNs’ IT platform (formally called ‘the Scalable Software as a Service for a clinical patient management system to support ERNs in the diagnosis and treatment of rare or low prevalence complex diseases or conditions across national borders’. A period of competitive dialogue will now begin.
• The Board of Member States of ERNs will convene next in September and will meet with the ERN Coordinators on 28 September to discuss key issues such as how to involve all Member States & EEA countries in each Network (particularly important for the smaller countries) to ensure meaningful pan-European access.

Finally, eUROGEN is delighted to have been invited, along with 7 other ERN Coordinators, to a meeting with the European Health Commissioner on 27 September to discuss key strategic issues and challenges for the ERNs going forward. This is an excellent opportunity to highlight that our ERN has the potential to create a step-change in harnessing European cooperation and the very best in research and innovation to deliver better care for patients with rare urogenital diseases and complex conditions all over Europe, no matter where the patient lives.

For more information please contact:Michelle BattyeEAU EU Policy CoordinatorTel: +44 114 271 3048m.battye@uroweb.org

Photo: selmaemiliano (Flickr)