eUROGEN and ESSIC work together against interstitial cystitis News from the 2019 meeting of the International Society for the Study of BPS/IC (ESSIC) Dr. Mariangela Mancini ERN eUROGEN Network Board Member Dept. of Urology University of Padova (IT) mariangela. mancini@unipd.it As a clinician and a member of the ERN eUROGEN Network Board, it is my pleasure to summarise my experience at the last ESSIC Meeting, which was held in Amsterdam, NL, 5-7 December, 2019. This year’s meeting objective, as emphasised by Dick Janssen, ESSIC Meeting Chair, was to focus on the multidisciplinary approach to diagnosing and treating BPS/IC with the aim of giving all attendees the tools and knowledge to be able to provide state-of-the-art treatment for patients. Personalised treatment strategies and patient participation were also extensively explored at the meeting. A novel feature this year was a presentation from ERN eUROGEN, which proposes collaboration with ESSIC to take a more strategic approach to the efforts to improve the diagnosis and treatment of IC for the benefit of patients across the European Union (EU). ERN eUROGEN is led by Prof. Wout Feitz, Consultant Paediatric Urological Surgeon, Radboudumc, the Netherlands and was established and approved, alongside 23 other ERNs covering different medical fields, by the European Commission (EC) in 2017 as a framework for facilitating multidisciplinary teamwork between medical experts across the EU.
Presentation of eUROGEN on December 5
Centres of particular expertise in different countries provide specialised input and share knowledge and advice. ERN eUROGEN began with 29 healthcare provider members from 11 member states and a recent call from the EC for new members means that as many as 31 new applicants could be joining by the end of 2020. This is a very welcome development. The expansion of the geographical coverage of the network will allow more patients to access the collective expert advice of the clinicians involved in the network. ERN eUROGEN discussions involve at least six experts from at least six countries to include most member states; expanding the number of members and states involved will give wider coverage which will be to the benefit of the patients. Members of the ERN are already collaborating to provide expert advice on the diagnosis and management of patients with rare and complex urogenital conditions.
eUROGEN then holds a multidisciplinary panel case consultation with the appropriate experts, and gives advice to the treating clinicians. All this can be done without the patient having to travel. ERN eUROGEN is also working on developing clinical guidelines and research projects on IC/BPS. One of these, with strong support from the patient organisations, is devoted to the establishment of a biobank of urine or tissue samples from IC patients, in order to support research projects and basic science work. A location to establish an international IC biobank is currently being investigated.
ERN eUROGEN is structured into three workstreams: Workstream 1 – rare congenital urogenital anomalies (led by Prof. Wout Feitz); Workstream 2 – complex functional urogenital conditions and pelvic floor disorders requiring highly specialised surgery (led by Prof. Margrit Fisch); and Workstream 3 – are urogenital tumours (led by Prof. Vijay Sangar). Each workstream is subdivided into disease areas, with IC/ BPS being one of these (Workstream 2.5 BPS/IC), and this was the main topic of the ERN eUROGEN presentation at the ESSIC meeting (Fig. 1).
The presentation highlighted the central role of patients in ERN eUROGEN activities, which is also strongly supported by the EC. Patient representatives both present the patient view and represent patients’ voices within ERN eUROGEN. They provide the patients’ point of view and experience, and communicate back to and connect with the patient community. They constantly review the effectiveness of the ERN and evaluate how the ERN acts on feedback received, promoting a patient-centred approach. Finally, they contribute to the definition of research priorities and the ethical standards of the ERN. In ERN eUROGEN, patient representatives regularly participate in and talk at meetings, providing their precious input. With the support of the president of the AICI, Loredana Nasta, IC/BPS was included in eUROGEN, supported by the coordinators of the three workstreams, and together with EURORDIS.
The presentation demonstrated how ERN eUROGEN is working to implement the Clinical Patient Management System (CPMS), the web-based clinical software application provided by the EC, where healthcare providers from across the EU can work together virtually across national borders to diagnose and recommend treatment for patients with IC/BPS within Europe. The system is fully secure and complies with all national and European data protection legislation. Using CPMS for discussions on a particularly complex patient by several experts in different countries represents a step-change in collaboration at European level between healthcare providers. Clinicians treating IC/BPS patients who cannot be easily managed or treated at a national level can contact ERN eUROGEN and ask for cases to be reviewed by the expert teams. The treating clinicians are issued with a guest login to CPMS so they can upload the relevant medical information. ERN
The ERN eUROGEN presentation at the ESSIC Meeting was delivered by myself, as the eUROGEN Disease Area Coordinator (DAC) for IC/BPS, and Serena Bartezzati, ERN eUROGEN ePAG (European Patients Advocacy Group) Representative and Board member of the Italian Association of Interstitial Cystitis (AICI).
Some important quotes from the lecture on the work of the ERN eUROGEN network are: “An important result of patient involvement in research is to balance the scientists’ hypothesis with what is possible, desirable and acceptable to individual patients.” “To fast-transfer the data from bench to bedside, with an interest on clinical application of rough data.” “One of the main advantages of Patients Driven Research (PDR) is its speed”. The first day of the meeting ended with a ceremony chaired in person by the legendary St. Nicholas (Sinterklaas in Dutch), an early Christian Bishop and
Sinterklaas joining the speakers at the end of the day
benefactor of children with the secret habit of gift-giving, who traditionally brings presents to children in Belgium and the Netherlands on the night of December 5! A special moment was dedicated to the memory of this historical religious leader (Fig. 2). May he bring the gift of better treatment opportunities to all IC/BPS patients in Europe! I am sure that everybody enjoyed the spirit and positive atmosphere of the cosmopolitan city of Amsterdam during the three-day congress. The ERN eUROGEN Network Board would like to express their gratitude to ESSIC for their support and for integrating the ERN eUROGEN presentation into this year’s programme. Joints efforts between institutions and groups involved in IC/BPS treatment is highly desirable. The final objective of these efforts is to build new bridges and wider perspectives for our patients’ benefit and assure them of the best clinical care, reaching to the edges of the EU, without borders and beyond single nations. We hope to strengthen and enrich these joint efforts in the near future!
Preparing for Horizon Europe The future of EU research and innovation and EAU priorities By Sarah Collen, EAU Policy Coordinator
The overall aim of this cluster is to demonstrate the EU’s support to the UN’s Sustainable Development Are you active in clinical research with international Goals calling for universal health coverage for all at all partners? Then you must have heard about Horizon ages by 2030 by: Europe, the new 7-year European Union scientific • developing innovative solutions to prevent, research programme by the European Commission. diagnose, monitor, treat and cure diseases; This programme will be the successor of the current • mitigating health risks, protecting populations and EU research and innovation programme- Horizon 2020. promoting good health; • making public health systems more cost-effective, With a proposed budget of 100 billion euro, Horizon equitable and sustainable; Europe aims to strengthen the EU's scientific and • and supporting and enabling patients' technological bases and the European Research Area, participation and self-management. to boost Europe's innovation capacity, competitiveness and jobs and to deliver on citizens' priorities and The Health cluster is divided into several areas of sustain socio-economic model and values. intervention that were defined on the basis of key challenges to public health in the EU: The ambitious initiative proposes to raise EU science • Health throughout the life course spending levels considerably over the years 2021-2027 • Environmental and social health determinants with a planned funding to address public health issues • Non-communicable and rare diseases of 7.7 billion euros. Of course, this offers possibilities • Infectious diseases, including poverty-related and for research and innovation in urology as well. For that neglected diseases reason the EAU hosted a workshop last November on • Tools, technologies and digital solutions for health Horizon Europe together with the Biomed Alliance, a and care, including personalised medicine conglomerate of 32 medical societies that facilitate and • Health care systems improve biomedical research . Gianpietro Van De Goor, who is one of the leaders on the team pulling together A new mission on cancer all the activities of the ‘health cluster’ of Horizon The new 'missions' are a key novelty of Horizon Europe, gave the opening presentation. Europe. Missions will consist of portfolios of research and innovation projects at all Technology Readiness Structure of the programme Levels, with a clear goal that matters for EU citizens. Horizon Europe will consist of three pillars; open The EU political process has defined cancer as the science; global challenges and industrial health mission, which will fall under the health cluster. competitiveness. The second pillar on global The Commission has appointed members to each challenges includes a health cluster, and is of mission board. Mission boards will advise the particular relevance for the EAU. European Commission how to define and implement 30
European Urology Today
each Mission area. The three priority areas identified in this cancer mission are prevention, treatments and survivorship. The new public private partnership (formerly the Innovative Medicines Initiative) The Commission has proposed that the Innovative Medicines Initiative (IMI) should expand its scope to become the Innovative Health Initiative (IHI), broadening the remit from pharmaceuticals to include diagnostics, medical devices, medical imaging and biotech. This would impact not only the research agenda, which is currently decided by the research directors of pharmaceutical companies, but also its composition, since the industry partners’ contribution to IMI is managed by EFPIA (European Federation of Pharmaceutical Industries and Associations). IMI also has an assortment of associated partners including charities, universities, research institutes and small companies.
EU citizens access their electronic health records and prescriptions when abroad in the EU, but will also aim to support the use of data for research purposes. PIONEER can really assist this initiative.
Taking EAU priorities forward with the European Commission As a follow up of the workshop, representatives from the EAU discussed the shared priorities for the themes emerging from Horizon Europe. We agreed that the research on cancer would be an important theme for our research alliances, with a particular focus on prostate cancer. Also, the work on sharing and inputting digital data for research purposes is a critical theme, and leads on from our work on eUROGEN and A network of researchers from the EAU is currently PIONEER. Both will be priorities of our shared work involved in a project funded by the IMI, using ‘big data’ together. The next step will be a meeting with the to better prostate cancer outcomes, called PIONEER. At relevant European Commissioners on these subjects, the earlier mentioned workshop on Horizon Europe, highlighting how the EAU can support them in their Magda Chlebus from EFPIA highlighted the importance aims. of medical societies joining in with these projects, as they ensure the link with translation of research to If you’re interested to play a role in one of these clinic, and to the patients their members care for every initiatives or in case you have a research project at day. The use of ‘big data’ is likely to remain a key national level contributing to urology, please contact priority in the IHI programme, especially as the new Sarah Collen, the new EAU policy coordinator at European Health Commissioner has been asked to EUoffice@uroweb.org. More information on Horizon deliver a European Health Data Space, which will help Europe can be expected in the course of this year. January/February 2020
