Digital technologies will change the future of health care The EAU and European Health: The ERN eUROGEN programme Naside Mangir, FEBU ERN eUROGEN Clinical Data Specialist Sheffield (UK)
Feitz (Radboudumc in Nijmegen, NL), work stream 2 on complex urogenital conditions requiring highly specialised surgery is led by Prof Margit Fisch (Universitätsklinikum Hamburg, DE) and work stream 3 on rare urogenital tumours is led by Prof Vijay Sangar (The Christie NHS Foundation Trust, Manchester, UK). Due to the Brexit developments, the overall ERN eUROGEN coordinatorship by Prof. Chris Chapple was recently transferred to Prof. Wout Feitz of Radboudumc with the approval of our current Members.
With increased longevity and the rising prevalence of chronic conditions, the costs of health and long-term care have grown over recent decades. Additionally, increased public expenditure on health and advancements in medical and surgical sciences have not necessarily translated into good health for ageing people. Therefore, greater effort is needed to build more effective, accessible and sustainable health care systems. The European Commission and our health care The European Commission has been developing strategies to cope with the challenges that lie ahead for health care systems. Digital technologies are increasingly becoming a part of our daily lives and can offer solutions and opportunities to tackle some of the challenges faced by health care systems. The eHealth programme focuses on the deployment of modern and efficient digital cross- border health services throughout Europe. The EU eHealth action plan 2012-2020 is closely linked to the cross-border healthcare directive which gives patients the right to receive medical treatment in another EU country. To facilitate the cross-border movement of health information securely and effectively, digital service infrastructures have been developed. As of now, ePrescription, eDispension and ePatient Summary services have been piloted. With these services, patients can take their summary of medical records to, or acquire medications in, any other EU country.
ERN eUROGEN’s health care providers are connected through a dedicated IT platform called the Clinician Patient Management System (CPMS). Via this web-based platform, patient information can securely and effectively be uploaded and shared among centres. The system pseudonymises patient data (at both the level of the patient/clinician and the researcher) after the case is closed (and when consent has been provided), stores the data in a low accessibility database and provides a mechanism to allow an ERN or the Contracting Authority to collect and export data (e.g. relational database) for potential sharing or future use in clinical decision-making tools, protocols, guidelines, case libraries or research.
“ERN eUROGEN enables health professionals working on urogenital diseases anywhere in Europe to access a ‘virtual’ advisory board of medical specialists using telemedicine tools to review a patient’s condition for diagnosis or treatment.” Effective management system The CPMS is very effective in generating structured general patient information (e.g. name, history, pedigree), viewing digital medical images through Picture Archive and Communication Systems (PACS) in multiple formats, including magnetic resonance imaging (MRI) and computerised tomography (CT). Currently, new add-ons are being integrated that will allow the sharing of histopathological information between centres.
Continuity of care All of these measures, ultimately, aim to ensure continuity of care by establishing interoperability between health systems. Therefore eHealth, telemedicine and other digital technologies such as artificial intelligence and supercomputing, are acknowledged as new tools and strategies to address the current challenges for health care systems in Europe and to transform them into more cost-effective and sustainable systems. Looking at the future, developers are working to allow CPMS to extract data on specific patients by The European Reference Networks (ERNs) are key to interfacing with the electronic patient records of facilitating the cross-border exchange of health data health care providers. Radboudumc and and clinical expertise between member states. The Universitätsklinikum Hamburg-Eppendorf are two of ERNs were endorsed under the EU Directive 2011/24/ ERN eUROGEN’s health care providers who are EU on patients’ rights in cross-border healthcare. currently working intensively with the European ERNs are virtual networks between health care Commission’s IT teams to test this CPMS functionality. providers and centres of expertise across Europe to improve access to diagnosis and the provision of Virtual advisory board high-quality healthcare to all patients with rare or ERN eUROGEN enables health professionals working complex conditions. ERNs currently focus on cases of on urogenital diseases anywhere in Europe to access rare or low prevalence and complex diseases which a ‘virtual’ advisory board of medical specialists using require a particular concentration of resources or telemedicine tools to review a patient’s condition for expertise. The ERNs are also focal points for medical diagnosis or treatment. This allows health training and research, as well as information professionals, who previously would have handled dissemination and evaluation, especially for rare rare and complex cases in isolation, to consult peers diseases. Currently, there are 24 ERNs involving more and seek a second opinion from a colleague. than 900 health care providers and sub-specialty centres from 300 hospitals in 26 EU countries. A central feature of these tools is interoperability. Thanks to technology, geographical distance does not eUROGEN need to be a barrier to work in dispersed teams. In ERN eUROGEN is the European Reference Network some cases, phone or video calls will suffice. On other (ERN) for rare urogenital diseases and complex occasions, networks can use dedicated systems to conditions. Its main aim is to improve diagnosis and share tissue samples or high-resolution images of create more equitable access to high quality treatment complex conditions. These technologies can also be and care for patients with rare urogenital diseases and used as a repository of cases, helping to build a large complex conditions needing highly specialised surgery. bank of cases for further study and education. Currently, ERN eUROGEN comprises of 29 healthcare providers as full members from 11 Member States who Panel case review collaborate to provide diagnoses or recommendations When a clinician is treating a patient who has a rare for the treatment of patients with rare or very complex or complex urogenital condition that cannot easily be urogenital conditions. In close collaboration with managed or treated at national level, and their centre EURORDIS, patient representatives are involved at all is outside of the ERN eUROGEN network, the clinician levels of our organisational structure in order to be can contact ERN eUROGEN and ask for a review of this able to give advice and specialist expertise from the case (after gaining informed consent from the patient patient or parent perspective on rare or highly complex for their data to be shared in CPMS). If agreed, the cases. This adds enormous value and improves the treating clinician can login as a guest to CPMS and overall care for our patients. can upload the relevant medical information with the help of our dedicated small team. ERN eUROGEN can Work streams then hold a panel case review with the appropriate ERN eUROGEN is structured into three work streams, experts from within our network who can give the each with a dedicated lead. Work stream 1 on rare treating clinician advice. All of this can be done congenital urogenital anomalies is led by Prof Wout without the patient having to travel. Monday, 18 March 2019
eUROGEN is one of the 24 European Reference Networks (ERN) that are approved and funded by the European Union (EU). ERNs are a cross-border cooperation at European level between healthcare providers with the aim of improving care for patients with rare diseases or complex conditions.
Continuity of care, from childhood throughout life We are delighted to announce that ERN eUROGEN has so far conducted a number of panel discussions on rare and complex urogenital cases requiring highly specialised care and surgery. Experts from centres across Europe are impressed by CPMS, in particular by the quality of the medical imaging. By using CPMS, we have been able to provide expert advice more quickly, thereby delivering better care to our patients and reducing the need for them to travel. Among the other 23 ERNs, ERN eUROGEN is set up in such a way that it can deliver patient care, diagnosis and treatment, ’ensuring continuity of care from childhood throughout life’. This is of particular importance to patients with rare and complex urogenital diseases as they require health care from childhood, throughout adolescence, into adulthood. This needs to be well organised in order to achieve a successful and satisfactory transition from paediatric care units to adult specialist care units, thereby ensuring the continuity of care. Partnership between EAU and eUROGEN Additionally, ERN eUROGEN has forged a strong partnership with the European Association of Urology (EAU). This puts ERN eUROGEN in a very strong position to increase awareness of the ERN networks amongst health care professionals. The EAU annual congress is a superb opportunity for clinicians involved in the ERN to use the platform of 16,000 urologists gathered together to reach out to clinicians who might wish to seek the expert advice of ERN eUROGEN for patients with a rare urogenital disease or complex conditions that they may not have seen often before. One of the objectives of ERN eUROGEN is to transfer knowledge to countries with fewer resources and less expertise. In 2019, the Member States will be busy appointing health care providers in countries where the ERN has no full member (these are called affiliated partners). Latvia and Austria have already contacted the ERN eUROGEN coordination team and we are delighted that we now have an official route for the referral of their patients. This will enable all of
the ERNs to expand their geographical coverage to all EU and EEA member states. ERN eUROGEN at the Annual EAU Congress This year ERN eUROGEN and our new affiliated partners will be focusing on rolling out the use of CPMS across the whole network, thereby facilitating more discussions and sharing expertise on complex and rare cases. We have plans for this collaboration to intensify and go beyond providing virtual expert clinical advice. ERN eUROGEN will also be working on developing new clinical guidelines where none currently exist, becoming even more research active (driven by the needs of our patients), training, providing education and sharing knowledge, especially in countries with less expertise and fewer resources. At the 34th Annual EAU Congress, Prof. Chris Chapple, Secretary General of the EAU and CPMS Implementation Lead for ERN eUROGEN, will present on ’The EAU and European Health: the ERN eUROGEN programme’ during plenary session 5 on Monday 18 March 2019. The ERN eUROGEN session will update you on the recent largest health care innovation in Europe involving 30 million patients with rare or complex conditions. This programme on urogenital rare diseases and complex conditions involves the whole spectrum from congenital anomalies to lifelong care and complex functional and rare urogenital tumours. There will also be a special session at the Annual EAU Congress on ERN eUROGEN on Saturday 16 March with a presentation by the new coordinator, Prof Wout Feitz and other experts and a patient representative involved. We would be delighted to see you there! Saturday 16 March 10.15-11.45: Specialty Session ERN eUROGEN Monday 18 March 08.00-10.30: Plenary Session 5 Prostate cancer
The eUROGEN team at the strategic board meeting in Noordwijk (2018)
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