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Photo of the ESC Patient Forum at the European Heart House in Nice, October 2018.

Involving patients in the activities of the European Society of Cardiology

Donna Fitzsimons and Alina Garyfalia Athanasopoulou from the European Society of Cardiology (ESC) tell us about patient engagement within their organisation


Why involve patients? 

The idea of working for patients is embedded in ESC’s mission: “to reduce the burden of cardiovascular disease”. But the idea of working with patients, involving them actively to a breadth of ESC activities in implementing evidence, supporting patient self-management, improving patient outcomes and reducing health inequities, is a relatively new initiative. A step towards this direction was taken in 2017 when Patient Engagement was identified by the ESC Board as a strategic objective.

Further to this objective, the ESC Patient Forum was established in June 2018 involving patients from 12 different countries around Europe, living with a range of cardiac conditions. Since then, the Forum plays a pivotal role in diverse areas of work within ESC, amongst them our flagship ESC Congresses. Especially in this year’s ESC Congress in Paris in the end of August, patient involvement will be reinforced by participation alongside healthcare professionals on panel discussions in dedicated patient related sessions. “Patients need to have their own voices, and we need to hear them”, as ESC’s Patient Engagement Lead and Board member, Prof. Donna Fitzsimons says. 

Patient engagement: A two-way relationship

From the very beginning the intention of the ESC patient engagement initiative is to have patients as equal partners and co-producers along the journey. Healthcare professionals and patients sometimes, but not always, share similar views, and meaningful patient involvement should involve partnership and a meaningful relationship between the two. Professionals tune in to the patients’ feelings and needs while integrating their scientific knowledge to drive better patient care and achieve optimum health outcomes.  Yet, patients by virtue of their experience can bring to the table invaluable insight that is different, but complementary to that of professionals. This has the potential to influence cardiovascular care in a genuinely transformative way that is far beyond simply providing their views as care recipients. 

ESC & patient engagement: glimpse into the future

Patient Engagement is more and more becoming an integral part of ESC activities from guidelines and advocacy to congresses and educational resources. Worthy of a special mention is the involvement of ESC’s Patient Forum members in the update of the ESC Core Curriculum for the General Cardiologists (2020 Edition). They are also heavily involved in the development of ESC’s Clinical Practice Guidelines - from recording video testimonials based on their own experiences, to the production of patient information cards and in time patient participation in ESC Guidelines’ Task Forces. There are many opportunities and exciting plans afoot regarding this agenda and it has the highest level of managerial approval – one thing is for sure patients in the ESC are here to stay!

 By Donna Fitzsimons, ESC Board Member & Lead for Patient Engagement; Professor, Head of School of Nursing & Midwifery, Queen’s University Belfast. N Ireland and Garyfalia Athanasopoulou, Project Manager - ESC Advocacy Division

 Photo:  The ESC Patient Forum at the European Heart House in Nice, October 2018.