Patients – at the heart of ESC Congress 2025
29 Aug 2025
ESC Patient Forum representatives at ESC Congress 2024 “The patient voice is incredibly valuable, enriching every discussion we have and reminding us that there is a person at the centre of everything we do,” says ESC Patient Forum Chair, Professor Lis Neubeck (Edinburgh Napier University - Edinburgh, UK). “By creating meaningful dialogue between healthcare professionals, researchers and patients, we aim to ensure that care is both evidence-based and truly responsive to patients’ needs.”
Established in June 2018, the ESC Patient Forum now brings together 50 patients with a variety of heart conditions from 22 European countries. Its status was strengthened by the formal embedding of person-centred healthcare in the 2023–2028 ESC Strategic Plan, with a focus on patients not only on as beneficiaries of care but also as partners in shaping the future of cardiovascular health. The patient perspective is regarded as key across all ESC activities, including membership of Clinical Practice Guidelines Task Forces and ESC Committees, co-authoring of scientific papers, speaking at ESC Cardiovascular Round Table meetings and ESC subspeciality congresses, and supporting ESC Advocacy work with powerful testimonials.
This year will see the largest involvement of patients in an ESC Congress to date. Altogether, 20 ESC Patient Forum members will be on-site in Madrid sharing their experiences in 20 sessions in the ‘Includes a Patient Perspective’ track and 9 ESC TV Stage sessions.
ESC Patient Forum member, Mr. Benoit Mores, is attending ESC Congress for the very first time and is excited on several fronts: “I am really looking forward to learning about new advancements, with a particular interest in innovative care models that encourage self-management and the impact of digitalisation. It will also be great to meet fellow patients face-to-face to share our experiences, explore ideas for new projects and discuss ways to promote the forum.” By attending in Madrid, Mr. Mores hopes to provide insights into what living with a cardiovascular disease is like for healthcare professionals to take forward into their research and clinical roles. “Emphasising what matters to patients – for instance, our quality of life and mental and social aspects – is important to consider across the board, from endpoints in trials to improved shared decision-making process in the clinic.” He also hopes that publicity around the congress will help raise awareness that people with cardiovascular disease can make a full contribution to society and that there is no place for discrimination.
As a result of the tremendous success achieved by the ESC Patient Forum so far, the demand for patient engagement in additional ESC activities has soared beyond what current members can fulfil, observes Prof. Neubeck. “We get many requests for participation – we are even receiving requests for research involvement now too – but we can’t place an undue burden on our dedicated team,” she explains. “We want to increase the capacity and scope of the ESC Patient Forum, while also ensuring that we truly represent patients with cardiovascular disease across different countries and cultures. There are challenges, not least the current need to communicate in English. Other obstacles are cultural, which in some countries can deter people from challenging the decisions of healthcare professionals.” Potential solutions include live translation tools, working with National Cardiac Societies to represent the views of more non-English-speaking patients and closer relationships with patient-facing organisations. “Please also highlight the value of participation in the ESC Patient Forum to your patients to encourage them to join,” Prof. Neubeck requests.
ESC Patient Forum members are heavily involved in the development of patient versions of ESC Guidelines. These documents are intended to contribute to patients' understanding of their condition and to give them the knowledge and confidence to be involved in discussions with their healthcare providers. To coincide with the publication of the 2025 ESC Clinical Practice Guidelines for the Management of Myocarditis and Pericarditis, a patient version has been launched to add to the seven guides already available on escardio.org.
- Explore the sessions in the ‘Includes a Patient Perspective’ Track
- Spread the word about the ESC Patient Forum and encourage your patients to join
- Read patient versions of the ESC Guidelines
