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COVID-19 and Heart Patients Q&A

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ESC Patient Engagement

Focussing on what matters to patients

Why is the ESC actively involving patients in its scientific activities and how is it getting this exciting new initiative off the ground through its Patient Forum?

Patient Engagement: Not just a buzz word..

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 how to:

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

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

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.


Members of the Patient Forum share what they hope to achieve through the initiative

Our vision



Patient Forum at the European Heart House - October 2018

The vision is to have professionals and patients working together in order to make a meaningful contribution to all objectives of the ESC, from the 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. 

Our achievements so far ...

Patient Forum members have already contributed to a number of ESC activities, including:

  • Feedback and support in the development of EAPCI’s Patient Reported Experience Measures (PREMs) and Patient Reported Outcome Measures (PROMS) questionnaires
  • Feedback and support for the development of the ESC’s Guidelines Syncope Leaflet
  • Patient Forum member sitting on EHRA & Regulatory Affairs Committee’s Joint Task Force on CIEDs
  • Contribution to the ESC Education Conference, titled: “Educated healthcare professionals + Educated patients = Effective shared care”
  • Two Patient Forum members sitting on the Task Force for ESC Guidelines for Heart Failure

Living with a heart condition

In the light of the launch of five new ESC Clinical Practice Guidelines at ESC Congress 2019, members of the Patient Forum share their experiences of living with chronic coronary syndrome, SVT and pre-diabetes.

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