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eUROGEN ERN: Removing barriers in cross-border care and research

“Share. Care. Cure.” This, the mission of the European Reference Networks (ERNs), was emphasized during the eUROGEN Speciality Session at EAU19.

ERNs are the largest healthcare innovation in Europe; virtual cross-border networks involving expert teams, collaborating via the Clinical Patient Management System (CPMS) to share knowledge and treat >30 million patients with >8,000 rare or complex conditions.

eUROGEN is the urological ERN, covering rare conditions and diseases across pediatric, functional and oncological urology.  Currently it involves 29 healthcare providers from 11 EU countries, with additional Affiliated Partners joining now and a call for further full members to follow.

eUROGEN Network Coordinator, Prof. Wout Feitz (NL) co-chaired the special session and emphasized the importance of ERNs for conditions where very few doctors have enough experience to tackle cases alone. “The more information you have available, the better the care delivered,” he said.  He reported that based on early data, the healthcare providers in eUROGEN are expected to have positively impacted >100,000 patients having >60,000 procedures between 2013-2018.

Michelle Battye (GB), eUROGEN Manager and session co-chair, noted that a priority objective of the ERN is to help smaller population countries, and stressed that eUROGEN is not a project; it’s a new and unique form of cooperation in healthcare at European level. “This is the beginning of an iterative process,” she said.

Vijay Sangar (GB), Workstream 3 Lead, noted that another eUROGEN goal is to educate and train existing clinical teams and future clinicians.  He emphasized that collaborative research is essential given the low patient numbers in some countries.  Being part of an ERN removes barriers between Member States, facilitating funding applications, recruitment, and infrastructure change.

Giovanni Mosiello (IT) demonstrated how CPMS has already been used to make suggestions for the treatment of a male infant with severe cloacal exstrophy in order to improve his standard of care and, ultimately, his quality of life.  Serena Bartezzati (IT), European Patient Advisory Group (ePAG) Representative, also presented and encouraged the development of eTraining programmes within ERNs as an innovative method of patient involvement.

Eberhard Schmiedeke (DE) spoke about non-financial conflicts of interest and the centralization of care.  He stressed that the primary interest of the patient should overrule the secondary interests of clinicians.  He said: “A musician wouldn’t perform who hadn’t practiced in months, and a coach wouldn’t include someone in a team who hadn’t trained. But consultants who only see a rare or complex case once a year will still perform surgery.  This doesn’t make common sense.”

He concluded: “As European countries we are unified in our ideals – human rights justice, and democracy.  We will never reach perfection, but every step is in the right direction.”

If you would like to learn more, eUROGEN has a stand at the EAU19 exhibition, within the EAU booth, where you can ask questions and get CPMS demonstrations and training.

We talked with Prof. Wout Feitz (NL) about the aim of eUROGEN. Watch the interview here.