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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 activities.

From how we set up registries and develop clinical practice guidelines, to the content we put in our educational programmes for cardiologists and patient websites, we can do more - we must do more - to integrate key learning from the patient's perspective.

Patients can offer valuable insight that is both different and complementary to that of healthcare professionals.

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

We see 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

Donna Fitzsimons, ESC Patient Engagement Lead, 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.

ESC Patient Forum

Patient Forum at the European Heart House - October 2018

In 2018, the ESC Patient Forum was established, bringing together 25 patients from 11 countries around Europe. Each patient has a personal experience with different cardiac conditions.

The initial workshop took place in June 2018 at the European Heart Agency in Brussels and was an opportunity to share with patients ESC activities and learn more about what the patients' own expectations were about getting involved in this new initiative.

The second Patient Forum meeting took place at the European Heart House France, in October 2018 and has set the ground for active involvement of the group in several ESC activities and areas of work, from education to guidelines and communication.

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’ perspective can enrich 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

What the patients have to say

During their visit to the European Heart House, members of the Patient Forum shared their stories and what they hope to achieve through the initiative.

Recent Publications

  1. Patient Engagement - European Heart Journal, Volume 38, Issue 42, 7 November 2017
  2. Patient Engagement – A strategic objective of the ESC to improve cardiovascular care - European Heart Journal, Volume 38, Issue 42, 7 November 2017
  3. Barbara Casadei, the new ESC president, outlines her vision - European Heart Journal, Volume 39, Issue 41, 1 November 2018
  4. ESC involving patients: purpose & priorities - European Heart Journal, Volume 39, Issue 41, 1 November 2018
  5. Doctor becomes patient - European Heart Journal, Volume 40, Issue 6, 7 February 2019