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ESC Patient Engagement

Focussing on what matters

Why the ESC is actively involving patients in its scientific activities and how it's getting this exciting new challenge off the ground through its Patient Forum.

Patient Engagement: Not just a buzz word...

Patients take part in ESC Congress 2018 for the first time

The ESC is taking patient engagement seriously because we believe the patient's perspective on how we prevent and manage their disease - and the impact it has on their life - is critical to improving and developing scientific and educational activities.


From how we set up registries and develop clinical practice guidelines, to educational programmes for cardiologists and content for patients, patients can offer invaluable insights.

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 to:

  • find better ways of implementing evidence
  • support patient self-management
  • improve patient outcomes
  • reduce health inequities

“The ESC patient engagement forum will enable the patient voice to be heard, helping healthcare teams to see things from a different perspective’’. Read the full article in Cardiopulse.

Donna Fitzsimons, leading the ESC Patient Engagement, provides an overview of the roots and goals of this initiative, designed to create a shared space for information and support among professionals and patients.

What the patients have to say

Members of the Patient Forum share their stories and what they hope to achieve through the initiative.

ESC Patient Forum

Patient Forum at the European Heart House - October 2018

Established in 2018, the ESC Patient Forum brings together 25 patients from 11 countries around Europe. Each patient has personal experience with cardiovascular conditions.

Initial workshops have been the opportunity to:

  • share ESC activities with patients
  • explore patients' expectations of this new initiative
  • set the ground for the patient forum's active involvement in selected ESC activities.

What we hope to achieve

The aim of the ESC Patient Forum is to provide a structure through which patients can share their views on the science, education and tools the ESC develops to improve the prevention of cardiovascular disease and impact in the diagnosis and management of heart conditions.

‘’We have much to learn from patients’’, says Prof. Barbara Casadei, ESC President. ‘’They are the experts on what it means to experience heart disease’’ and patients’ perspectives can enrich the ESC’s work in many ways, from conveying strong messages through the guidelines to offering accurate and essential information through a dedicated patients’ webpage. Read the full article in Cardiopulse

Presentations from recent events

Presentation Speaker Slides Webcast
Why is it important to empower and engage patients?
Patient involvement in the ESC Barbara Casadei (introduction by Stephan Achenbach) Slides Webcast
ESC perspective Donna Fitzsimons Slides Webcast
New models of collaboration with patients
Educational aspects Paulus Kirchhof Slides Webcast
Role of patients as data owners/providers
Involving patients in research and pragmatic trials: Duke Clinical Research Institute Renee Leverty Slides Webcast
Securing better health outcomes through patient engagement
Patient involvement in Guidelines - German Agency for Quality in Medicine Corinna Schaefer Slides Webcast
Patient-reported Outcomes Measures Tone M Norekvål Slides Webcast



Recent publications