In January, the collaborative work of the healthcare providers in Workstream 2 of ERN eUROGEN led to the delivery of the best available care for two complex cases of acquired female uro-recto-genital tract abnormalities. The patients were referred by a renowned tertiary centre in Tenerife. Although the referring centre has considerable expertise in the area, the very significant complexities of the cases with several previous surgical interventions and functional urological problems, made the cases ideal for a European panel discussion of experts to ensure the best possible treatment outcomes for the patients concerned.
After taking full informed consent from the patients, their medical information (including histories and imaging studies) was securely and effectively uploaded to the CPMS by the primary care provider in Tenerife. The eUROGEN team worked intensively with the team in Tenerife to train them on how to use the system. The clinical data was then jointly reviewed by a panel of experts from four healthcare providers within Workstream 2 (functional uro-recto-genital problems requiring highly specialised surgery) to discuss the optimal surgical approach for the management of these complex problems.
The panel members were: Sheffield Teaching Hospitals NHS Foundation Trust, UK (Prof. Christopher Chapple, panel lead); Universitätsklinikum Hamburg-Eppendorf, Germany; Katholieke Universiteit Leuven, Belgium; and University Hospital of the Canary Islands, Santa Cruz de Tenerife, Spain (the clinicians treating the patients, Prof. David Castro-Diaz and two of his trainees). Due to clinical commitments and time zone differences, the meeting was held in the evening, thanks to the dedication of our network members. Because the high complexity of these cases, a joint operation at the point of care was arranged, with Prof. Chapple, the panel lead, travelling to Tenerife to perform the highly complex surgeries.
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 which allows the confidential transfer of medical records and their subsequent discussion in a European level multi-disciplinary team meeting. The data travels and not the patient! The real innovation and added value here is being able to effectively review all of the patients’ information without data protection concerns 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 offer rare opportunities to train surgeons in order to expand their horizons and improve their understanding of supra-specialised surgical techniques. In this case, to maximise the training opportunities, the surgeries were observed by a wider audience at the host healthcare provider, with Prof. Chapple giving a detailed commentary on an explanation of the surgical techniques. This live surgical event was recorded by colleagues working in the host institution, and eUROGEN has worked with the European Commission’s CPMS helpdesk to enable the surgical videos to be uploaded to the CPMS and shared with the wider community of ERN healthcare providers for training and educational purposes. We have plans to upload further highly specialised surgical videos to help train the next generation of supra-specialised surgeons.
This experience represents a milestone for all of us who passionately believe in the ERNs and their capacity to produce the best results for our patients with the most complex diseases and conditions. Together, we look forward to maximising our fantastic collaborationas as we welcome Affiliated Partners into our network and as the awareness of ERNs increases in the upcoming years, and know we can contribute even more to improving outcomes for our patients.
Photo above, from left to right:
First row: Dr Naside Mangir (eUROGEN Clinical Data Specialist); Dr Tim Ludwig (Hamburg); Darren Silhan (eUROGEN Lead Data Analyst)
Second row: Prof Chris Chapple and Michelle Battye, eUROGEN manager (Sheffield); Prof David Castro Diaz, Dr David Hernandez and Dr Barbara Padilla (Tenerife); Dr Frank Van der Aa (Leuven).
