How the European Society of Cardiology (ESC) Patient Forum is contributing to shaping cardiovascular care and clinical guideline development

A recent article, titled “The essential role of patients in advocacy and policy”, published in the European Heart Journal on July 21, 2023, describes the activities of the European Society of Cardiology (ESC) Patient Forum and how it is empowering patients in shaping cardiovascular care.

The European Society of Cardiology established the “ESC Patient Forum” in 2018, recognizing the vital role patients play in shaping cardiovascular practice. Forum members, hailing from various European countries and backgrounds, infuse the European Society of Cardiology’s activities with their diverse experiences. They contribute through participation in task forces, co-authoring publications, and speaking at European Society of Cardiology and subspecialty Congresses. The Patient Forum was integral in crafting the European Society of Cardiology’s Strategic Plan 2023–2028, emphasizing patient-centered care as a key priority. While primarily an internally focused group, members aspire to influence EU healthcare policy and engage in advocacy work, potentially involving caregivers and family members. They seek to collaborate with other European Society of Cardiology members in advocating for meaningful change. Future initiatives will provide the framework for expanded external advocacy, upholding the principle of “nothing about us without us” in healthcare policy-making.

Here are two key examples of the involvement of the “ESC Patient Forum”.

Since 2020, all Guidelines Task Forces have one or two patient representatives as task force members, reviewers or through scoping exercises.

Since 2019 “ESC Patient Forum” members have participated in the European Society of Cardiology Congresses as speakers and co-chairs.

Read more about ESC Forum activities at this link

The Alliance for Pulmonary Hypertension is represented on the ESC Patient Forum by Pisana Ferrari, its Secretary General.


Lis Neubeck, Mary Galbraith, Inga Drossart, Richard Mindham, The essential role of patients in advocacy and policy, European Heart Journal, Volume 44, Issue 28, 21 July 2023, Pages 2506–2507,

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