ESC Patient Forum: What we do

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).

Since 2021, the ESC publishes patient versions of the ESC Guidelines that summarise in lay language the most important recommendations from the Guidelines. 

Listen to ESC Patient Forum members Axel Verstrael and Richard Stephens sharing their experiences in guidelines development:

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, Think Tanks and Task Forces

ESC Patient Forum members are active on a number of ESC Committees such as the Clinical Practice Guidelines Committee, the Education Committee, the Digital Health Committee, the Advocacy Committee, the Ethics & Oversight Committee, the DOI Committee and the Communication Committee. 

They also contribute to the Think Tank on Innovation and the Gender Task Force. 

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

The Forum can establish internal workstreams to develop and implement projects on topics which have been identified as common interest and priority. In the past, the following workstreams were created:

• CVD in women
• Emotional well-being
• Digital health

Publications from these workstreams:

• 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

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