Using health data in a way that is useful for clinicians and patients, but also for research, innovation and policy-making. This is the purpose of the European Health Data Space (EHDS) initiative. But the innovative plan is still shrouded in a number of questions and uncertainties, such as what data to actually share and how safe it is for patients. European cardiology experts say a European consensus on these issues is needed.
Negotiations on the EHDS proposal should be completed within the mandate of the current European Parliament by spring 2024, but everything depends on the discussion among EU Member States. Although experts from European cardiology societies and medical organisations agreed at a conference at the IKEM in Prague that shared data can be a significant and also inevitable benefit for cardiology, it is impossible to move forward without uniform rules.
“The most imporant is to have clear goals and to have clear data. We should gather data on the national and international level to identify the risk factors,” said Klaudia Vivien Nagy from Semmelweis University Heart and Vascular Center in Hungary, who shared with those in the room how data works in hospitals there. “In every hospital, on every clinic you can connect to a national server, on which you can as a physician upload your summary, laboratory data and also image data,” Nagy said. Thus, every patient in Hungary has their data from all doctors, including primary care, stored on the server, which was especially appreciated by Donna Fitzsimons, co-chair of the advocacy committee of the European Society of Cardiology, who spoke at the conference about the potential of the EHDS (we wrote here).
In this context, however, the President of the Slovenian Cardiovascular Society, Professor Zlatko Fras, expressed his concerns, saying that a common decision-making consensus needs to be established on what is actually right to share in such large databases. However, he welcomed the possibility of making the data obtained available for scientific purposes, in which the European Cardiology Society (ECS) could play a crucial role because of the mutual trust between doctor and patient.
The coordinator of Spain’s national cardiovascular health strategy, Héctor Bueno, responded. „The problem in Spain is that every hospital has a different electronic system, but we need to take advantage of that data. We have to decide what information is really valuable,“ he said, agreeing with Fras.
Franz Weidinger, President of the European Society of Cardiology, also joined the debate and underlined the importance of harmonised rules across Europe. „To have standardised data sets, the discussion is very important. It’s about data privacy, to avoid misuse,“ he warned.
Slovenia and Slovakia rely on universal screening
Although Slovenia, according to Fras, is ready to develop and then implement its own national cardiovascular plan, the professor of the Slovenian Society of Cardiology himself is somewhat sceptical about it. “Having a separate focused program on cardiovascular disease is a bit bizarre. It’s like having a special program for every disease. It is so overwhelming that people should be dealing with it every moment of their lives,” Fras appealed for preventive behaviour and a healthy lifestyle. While he is an advocate of setting strategies, goals and objectives, he said it is more important to track the outcomes associated with the actual implementation. “That’s the real value of why we are here. Because otherwise it is just another paper on the table,” Fras shrugged.
The universal screening for familial hypercholesterolaemia (FH), which has been operating in Slovenia for 20 years, has so far helped in the early detection of cardiovascular diseases. In the Czech Republic, the method of early detection of FH in newborns was launched from 2018 to 2022 as part of a pilot project aimed at contributing to the priorities of Action Plan 7: Development of health screening programmes in the Czech Republic. In addition to Slovenia, Slovakia is also implementing universal FH screening in Europe.
Photo by Martin Kovář
The Healthcare Daily would like to thank the general partner of the conference, Novartis, and partners Institute of Clinical and Experimental Medicine, General Health Insurance Company, RBP Health Insurance Company, Ministry of the Interior Public Health Insurance Fund and Amgen for their support.