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
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
|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|
- Patient Engagement – A strategic objective of the ESC to improve cardiovascular care - European Heart Journal, Volume 38, Issue 42, 7 November 2017
- Barbara Casadei, the new ESC president, outlines her vision - European Heart Journal, Volume 39, Issue 41, 1 November 2018
- ESC involving patients: purpose & priorities - European Heart Journal, Volume 39, Issue 41, 1 November 2018
- Doctor becomes patient - European Heart Journal, Volume 40, Issue 6, 7 February 2019
- Patient engagement at the heart of all European Society of Cardiology activities - Cardiovascular Research, Volume 115, Issue 10, 1 August 2019