ESC Patient Engagement
Focusing on what matters to patients
Our vision
The vision is to have professionals and patients working together to make a meaningful contribution to all objectives of the ESC, from congresses and educational resources to ESC Guidelines and advocacy. We want to develop and enhance patient engagement so that it is embedded like a golden thread through all ESC activities.
The ESC sees patient engagement as a partnership between patients and healthcare professionals that actively supports our mission of reducing the burden of cardiovascular disease. Our aim is to listen and learn from patients on how to:
- find better ways of implementing evidence
- support patient self-management
- improve patient outcomes
- reduce health inequities
The ESC Patient Forum
Established in 2018, the ESC Patient Forum, led by Lis Neubeck, brings together people with lived experience of cardiovascular conditions from across Europe. It provides a platform to engage in ESC activities and share perspectives.
The Forum raises awareness of what matters to people living with cardiovascular disease, promotes communication between patients and healthcare professionals, and supports patient-centred cardiovascular science.
Since 2018, the Forum has grown from around 20 members to over 60 in 2026, with expanding involvement across ESC activities. Members now contribute to Clinical Practice Guidelines, ESC Board and Association committees, ESC Congress, subspecialty congresses, education and advocacy.
In the ESC Strategic Plan 2023–2028, person-centred healthcare is a core priority. This is implemented by embedding the patient perspective in research, education and guidelines. The ESC Patient Forum plays a central role in advancing this goal and strengthening the ESC’s position as a global leader in patient-centred cardiovascular care.
Built on the shoulders of giants
While the ESC Patient Forum is steadily growing and welcoming new members, it also mourns and remembers those who are no longer with the group. The Forum would not be where it is today without their passion, dedication and excellent contributions.
Jim Ainslie (1947 - 2025)
Jim’s warm, welcoming, engaging personality made him an important foundational influence on the Patient Forum and on its subsequent development. Jim was always positive and saw the best in many situations. He was immensely grateful to the medical profession for what it had done for him personally and wanted to give back in any way that he could. In so many of our meetings over the years he was the one who asked the questions most relevant to the patient with a wisdom grounded in the common sense of the real patient. Jim was a great colleague and friend to all who knew him in the Patient Forum. His fortitude and example have influenced the development of the Patient Forum from a small group to a much-respected part of the ESC. Jim and his contributions to the Patient Forum will be remembered fondly by all of us who knew him and we will miss him greatly.
(Written by ESC Patient Forum member Hywel Jones)
Dan Foldager (1949 - 2023)
Dan, the Dane – as he would always introduce himself – was an ESC Patient Forum member from day 1. When we were still finding our feet and experimenting with different governance forms, he was ready to step up, take on responsibility for the group, and he got elected as Patient Forum Nucleus Chair. During the pandemic, when we could not meet and ESC activities were reduced, Dan always had ideas how to keep us busy and connected. Dan was passionate about patient engagement and always keen to contribute – whether it was in Guidelines, the myrhythmdevice.org website, or congresses. When he passed away, he left a big hole in the Forum. We miss this Dane and remember him as one of the giants on whose shoulders the Forum was built.
(Written by ESC Patient Forum member Inga Drossart)
Noémi de Stoutz (1958 - 2022)
When I first met Noemi in her home country, Switzerland, she was a true advocate for patients with a congenital heart disorder. She engaged with much voluntarism in patient organizations and the ESC Patient Forum. Until the very end of her life, she helped opening doors for patients being able to attend meetings with peer people living with a heart condition in all four corners of the world. Her wisdom helped seeking to ensure the well-being of every patient. For most, I remember Noemi as a very warm personality, always open to listening and talking to friends and fellow patients.
(Written by ESC Patient Forum member Benoit Mores)
More about the Patient Forum
Read what the Patient Forum does.
Read how you can apply and become part of our patient's community.
To join the Patient Forum or for any questions related to ESC Patient Engagement, please contact us.
ESC patient materials and support
Heart Failure Patient Website
The heartfailurematters.org website highlights how, with simple changes in lifestyle, a better understanding of heart failure and appropriate treatment, many people live full and active lives. It is time for us to help them take charge of their health. Visit heartfailurematters.org
Atrial Fibrillation Patient Website
An educational website designed by health professionals and patients for people suffering from atrial fibrillation. It is also a valuable resource for families and caregivers. Visit afibmatters.org
Cardiac Device Patient website
Get access to the information you need to make informed decisions when discussing the implant of a cardiac device with your physician, caregivers and family. Visit myrhythymdevice.org
Preventive Cardiology Patient Website
Cardiovascular disease is a common condition, accounting for four million deaths per year in Europe. Find reliable information and practical advice to prevent cardiovascular disease, manage your health more effectively and live longer, more active lives. Visit healthy-heart.org
EACVI Patient Information
Imaging procedures can be confusing and intimidating for patients. To help navigating them, the EACVI has developed webpages with leaflets and videos that provide clear explanations about what you can expect and how to prepare. Visit escardio.org
Patient versions of ESC Guidelines
According to the ESC Clinical Practice Guidelines, these documents outline diagnosis and treatment recommendations derived from medical and scientific evidence provided by healthcare professionals. They aim to help you better understand your condition, empowering you with the knowledge and confidence to engage in shared decision-making with your healthcare providers. Additionally, they offer advice on self-care strategies, which are crucial for effectively managing your condition. Visit escardio.org