ESC Patient Forum involvement in ESC activities
Guidelines
The ESC’s ambition is to benefit from patients’ perspectives in Clinical Practice Guidelines development with the aim of improving the relevance, quality and validity of the guidelines. Therefore, one or two ESC Patient Forum members sit on every Guidelines Task Force, and patients are also involved in the review process. To further enhance patient involvement in the development of the guidelines, an ESC Patient Forum member participates in the Clinical Guidelines Committee (CPG).
Listen to ESC Patient Forum members Axel Verstrael and Richard Stephens sharing their experiences in guidelines development:
Axel Verstrael
Richard Stephens
Since 2021, the ESC publishes patient versions of the ESC Guidelines that summarise in lay language the most important recommendations from the guidelines.
Collaborations
Patient Forum members are involved in several Association Committees such as the HFA Heart Failure Matters Committee, the EHRA Patient Committee, the ACNAP Science and Advocacy Committees, and the EAPCI Patient Initiatives Committee. They also function as co-authors in scientific documents initiated by ESC Associations, for example:
- How to use digital devices to detect and manage arrhythmias: an EHRA practical guide
- Culture, ethnicity, and socio-economic status as determinants of the management of patients with advanced heart failure who need palliative care: A clinical consensus statement from the Heart Failure Association (HFA) of the ESC, the ESC Patient Forum, and the European Association of Palliative Care
- Placing patient-reported outcomes at the centre of cardiovascular clinical practice: implications for quality of care and management: A statement of the ESC Association of Cardiovascular Nursing and Allied Professions (ACNAP), the Association for Acute CardioVascular Care (ACVC), European Association of Percutaneous Cardiovascular Interventions (EAPCI), European Association of Preventive Cardiology (EAPC), Heart Failure Association (HFA), European Heart Rhythm Association (EHRA), European Association of Cardiovascular Imaging (EACVI), ESC Regulatory Affairs Committee, ESC Advocacy Committee, ESC Digital Health Committee, ESC Education Committee, and the ESC Patient Forum
Committees
ESC Patient Forum members are active on a number of ESC Committees such as the Clinical Practice Guidelines Committee, the Digital Health Committee, the Advocacy Committee, the Ethics & Oversight Committee, the DOI Committee and the Communication Committee.
Congresses
ESC Patient Forum members regularly participate in the ESC Congress and several subspecialty congresses as speakers and discussants in scientific sessions. Here are some presentations they have given:
- AI chatbots: primary point-of-care contact for healthcare? A patient's perspective. Richard Mindham, ESC Congress 2023
- Remote Monitoring for the good and the bad – A patient’s perspective. Axel Verstrael, EHRA Congress 2023
- Risk perception throughout life: ‘I knew my risk, but I was young and thought I had time’. Julie Harris, ESC Preventive Cardiology 2023
- Patient´s experience: living and exercising with a device. Inga Drossart, ESC Congress 2023
Cardiovascular Round Table (CRT)
The Cardiovascular Round Table is a strategic forum for high-level dialogue between industry (pharmaceuticals, devices and equipment) and ESC leadership to identify and discuss key strategic issues for the future of cardiovascular health in Europe. ESC Patient Forum members regularly participate in these exchanges and share their perspectives on topics such as innovation in medical devices, unmet medical needs, diversity in clinical trials, or cardiometabolic risk reduction.
ESC Patient Forum workstreams
- CVD in women
- Emotional well-being
- Digital health
- Disparity in diagnosis and treatment of cardiovascular disease in women: a call to joint action from the European Society of Cardiology Patient Forum
- How your patient is really feeling: the emotional hinterland of a cardiac diagnosis
Advocacy: every story matters!
Patients are at the heart of the ESC's mission of reducing the burden of cardiovascular disease.
Listening to patients’ stories and experiences and learning from them is crucial for improving patient outcomes and quality of life.
In the testimonials below, ESC Patient Forum members share their challenges, needs, expectations and hopes.
There is a lot to learn from these stories for both the ESC scientific and clinical community and policymakers alike.
Cardiovascular disease in women
Cardiovascular disease is the leading cause of death in women worldwide. Because symptoms of cardiovascular disease in women may differ from those in men, we are confronted with gender differences, with CVD being understudied, underdiagnosed, and undertreated in women. Patients tell their stories.
Read Anežka Gombošová's testimonial >
Read Julie Harris' testimonial >
Read Mary Galbraith's testimonial >
Read Noemi De Stoutz' testimonial >
Changing the perception of cardiovascular disease
There’s a common misperception among the public that cardiovascular disease affects only older people, or people with risk factors and an unhealthy lifestyle. Listen to ESC Patient Forum members Julie Harris and Mattias Van Heetvelde, who shared their stories for World Heart Day 2023 to prove that cardiovascular disease can affect anyone!
Julie Harris
Mattias Van Heetvelde
Patient perspective articles
The European Journal of Cardiovascular Nursing regularly publishes patient perspective articles. ESC Patient Forum members contribute to this section. Please find some examples below:
- One patient's perspective: Who wants to stay in hospital? - Richard Mindham
- One patient’s perspective: The heart valve as the ticking sound of life - Benoit Mores
- Online patient resources: Guidance is helpful; exploring empowers! - Inga Drossart
Our mission: To reduce the burden of cardiovascular disease.