EuroHeart: Better data for better cardiovascular care
28 Aug 2021
“You cannot change what you cannot measure.” That is a key tenet of the EuroHeart (European Unified Registries for Heart care Evaluation And Randomised Trials) initiative, according to Co-Chairs of its Executive Committee, ESC Past-President, Professor Barbara Casadei (University of Oxford, UK) and Professor Lars Wallentin (Uppsala University, Sweden).
The idea behind EuroHeart is to have continuous online national patient registries where data are recorded in such a way that real-time feedback is provided on the quality of care.1 “At the ESC, we are passionate about improving quality and we know this is also a priority of every member of the ESC National Cardiac Societies (NCS),” said Prof. Casadei. “It’s not about naming and shaming,” she continued, “it’s about creating a culture – an ethos – of wanting to learn more about our performance and getting better where we can, at individual, local, national and Europe-wide levels.”
Prof. Wallentin explained, “An important aspect is that EuroHeart is a collaborative project between national registries, driven by or in conjunction with the NCS.” Each national registry will be independent and responsible for its own infrastructure, its IT systems, its databases, and the annual EuroHeart reports will be based on aggregative data, without any transfer of individual data outside the country. “The data generated can be brought to the attention of health departments and governments, with comparisons of aggregated data between countries where appropriate,” he added.
So what are the roles of the ESC in EuroHeart? The ESC is acting as a central coordinator, helping to develop and progress the initiative, investing in and designing the EuroHeart Registry IT platform, and providing a toolbox for the countries involved. A hugely important role is facilitating the development of standardised data sets and quality indicators for common cardiovascular diseases for use in the national registries. Professor Chris P. Gale (University of Leeds, UK), Chair of EuroHeart’s Data Science Group, described the rationale: “Standardised data definitions are essential for the reliable investigation of quality of care and outcomes. Heterogeneity in definitions impedes benchmarking and leads to inconsistencies that impact interpretation of analyses and implementation of their findings.” Through collaborations with teams of experts, datasets have already been finalised for acute coronary syndrome (ACS), percutaneous coronary intervention (PCI) and heart failure and work has begun on setting data standards in atrial fibrillation and transcatheter aortic valve implantation. “Gaining Europe-wide agreement on the minimal data set that should be recorded for each disease domain is highly valuable for other purposes, not just for EuroHeart,” said Prof. Wallentin.
Professor Aldo Maggioni (Research Center of the Italian Association of Hospital Cardiologists, Florence, Italy) is Chair of EuroHeart’s Quality Registry Coordinating Group. He discussed some of the added value that EuroHeart will bring: “Continuous individual patient data collection using harmonised datasets in a large number of hospitals in different countries provides reliable and representative data for observational research and for long-term safety surveillance, for example, of new devices and treatments.” He added, “EuroHeart also delivers a robust infrastructure to perform registry-based randomised trials, overcoming some of the limitations of the current clinical trials, such as, generalisability and cost.”
The development of EuroHeart was initiated in 2019 and the project is already making important advancements in its pilot phase. In May 2021, the first patient was recorded in the ACS-PCI registry in Estonia, which is the first registry built on the EuroHeart Registry IT platform. Meanwhile, Romania is the second country to join using the same platform. Recently, Hungary and Portugal have joined the project by harmonising their already established registries with the EuroHeart-standardised datasets for continuous monitoring of patients with ACS.
EuroHeart represents the new frontier in patient registries – a giant leap towards improved cardiovascular care across Europe.
Visit escardio.org to find out more about EuroHeart.
References
1. Wallentin L, et al. Eur Heart J. 2019;40:2745–2749.
