Michelle Battye, eUROGEN Centre Manager

A key purpose of the 24 European Reference Networks (ERNs) is to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, concentrated knowledge and resources.

A recent example of the powerful patient benefit of ERNs in practice is where, in January 2019, a British surgeon, together with Spanish and other European Health Care Providers (HCPs) in eUROGEN (the ERN for patients with rare urogenital diseases and complex conditions) delivered the best available care for two complex patients with acquired female urogenital tract abnormalities, living in Tenerife.

Professor Helen Cross and Michelle Battye

To begin the process, a renowned tertiary centre in Tenerife referred a case to eUROGEN.  Although the centre has considerable expertise in this area, the very significant complexities of the cases (which involved several previous surgical interventions and functional urological problems) made the cases ideal for a ‘virtual’ European panel discussion of experts in order to ensure the best possible treatment outcomes. eUROGEN has 29 HCP Members and 11 Affiliated Partners across 14 Member States, set up to provide precisely this support. The network has three workstreams:

  1. rare congenital uro-recto-genital anomalies;
  2. functional conditions requiring highly specialised surgery;
  3. rare urogenital tumours.

The network uses telemedicine tools in order to review a patient’s diagnosis and treatment.

Using a standard consent form available in all EU Languages, patients gave fully informed consent for their medical information (including histories and imaging studies) to be securely and effectively uploaded to the dedicated IT platform called the Clinical Patient Management System (CPMS) by the primary care provider (PCP) in Tenerife.  The PCP had been trained how to do this by the eUROGEN Lead IT and Data Analyst and the Clinical Data Specialist team.  The informed consent form used by the ERNs has been approved for use by the European Data Protection Supervisor and the security of all patient data fully complies with European and national data protection rules.

The clinical data was jointly reviewed by a panel of experts from four healthcare providers to discuss the optimal surgical approach for the management of these difficult problems. Due to the severity of the cases, it was decided that the best course of action was for a joint operation at the point of care, with Professor Christopher Chapple, the panel lead, travelling from Sheffield, UK, to Tenerife, Spain, to perform the highly complex surgery.

Prof. Chapple said: ‘All of us treat challenging cases and no matter how experienced you are, you will need to discuss your cases with other experts in the area, especially when dealing with such highly complex cases. The advantage of the ERN approach is that you have a purpose-built secure network that allows the confidential transfer of medical records and their subsequent discussion in a European level multi-disciplinary team meeting. The data travels, not the patient.  The real innovation and added value here is being able to effectively review all of the patient’s information using secure and appropriate data protection processes before travelling to operate, thanks to the ERNs and the CPMS. I am sure, as awareness increases about what the ERNs can deliver, we will be able to help more healthcare professionals and patients across Europe.’

Activities such as these also offer new opportunities to train surgeons in order to expand their horizons and improve their understanding of supra-specialised surgical techniques. In this particular case, to maximise the training opportunities, the surgeries were observed (with permission of the patient) by a wider clinical audience, with Professor Chapple giving detailed commentary and explanation of the surgical techniques.

The live procedure was recorded and eUROGEN worked with the European Commission’s CPMS helpdesk to enable the surgical videos to be uploaded to the system and shared with the wider community of ERN healthcare providers for training and educational purposes.

Examples like these represent milestones for all of us who passionately believe in the ERNs and their capacity to produce the best results for the small number of patients with the most complex conditions and rare diseases.  Together, we look forward to maximising collaborations like these as the awareness of ERNs increases.  We know we can contribute even further to improving outcomes for our patients.

More information can be obtained at www.eurogen-ern.eu. Please also support the #ProtectERNs campaign.

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