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.