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Involving patients in the ESC: Defining the purpose and priorities

ESC Congress News 2018 - Munich, Germany

The ESC has defined patient involvement as a strategic priority – but what does this mean and why should we do it?

According to incoming ESC President Professor Barbara Casadei (British Heart Foundation Professor, University of Oxford, Oxford, UK), “We have much to learn from patients because they are the experts on what it means to experience heart disease and I firmly believe that their input will enrich our Society.” Inga Drossart, a patient from Germany with a long-term heart condition says, “Many patients say that when they see a doctor there is usually insufficient time to voice their needs or ask questions about their condition and treatment, and some feel that they are not well educated enough to engage in a conversation about their health care.” She adds, “Also, lots of patients think that they must comply with whatever the doctor says, and they don’t understand that they can be part of the decision-making process, or perhaps their doctor may not allow this. I think those days are over.”

Professor Donna Fitzsimons (Queen’s University Belfast, Belfast, UK) explains, “There is a clear need for the patient’s voice to be heard and acted upon within cardiovascular care throughout the world and the ESC recognises that all our activities—from advocacy to education—should take greater account of patients’ needs and experience. Only in doing so can we achieve the Society’s mission of decreasing the burden of cardiovascular disease. As health care professionals, we like to think that we are tuned into patients’ needs and can represent them, but it’s important that patients have their own voice in our Society and as professionals, we listen and respond to them directly.” In light of this, the ESC convened a workshop in Brussels in June 2018. Patients from 10 countries who attended this workshop will form the first ESC Patient Forum, which will facilitate patient participation in different areas of ESC activity.

Prof. Casadei adds, “It’s important to stay tuned to patients’ preferences and insights on what it’s like to live with cardiovascular disease. We also need patients to communicate effectively evidence-based cardiology to the public and to advocate for investment in cardiovascular health across Europe.” She stresses that it’s imperative to involve patients in treatment decisions, particularly where there is no strong evidence available and recommendations are based upon a consensus of expert opinions. A key part of partnering with patients is through conveying relevant information in a clear and accessible manner and providing a platform for them to share experiences of the issues that really matter to them. In this regard, the ESC provides a diverse range of opportunities to involve patients.

Inga Drossart goes further and thinks that patient perspectives should be considered during the preparation of clinical practice guidelines for cardiovascular diseases, as well as in educational programmes for health care team members. She believes that the latter could be enhanced through the incorporation of ‘soft skills’, such as how to communicate effectively with patients, how to share scientific information with them and explore ways of encouraging patients to take responsibility and engage in their own care. Luka Vugrač, a patient from Croatia, feels that patients must also know how to ask the right questions in order to enhance the quality of the doctor–patient relationship. That is clearly a win-win for all.

Prof. Fitzsimons adds that, “Today, health care is complex, costly and time consuming, and only through working more closely with patients can we meaningfully understand and respond to the day-to-day challenges faced by clinicians. This is of utmost importance in the increasingly common setting of patients with chronic cardiovascular conditions requiring long-term contact with healthcare teams. We have excellent treatments and technology in cardiology, but all too often this is not put into practice or patient adherence is poor. Working more closely with patients can help us understand why and find better ways of implementing evidence, supporting self management and improving patient outcomes.”

Luka Vugrač adds, “The ESC patient engagement initiative will enable the patient voice to be heard, helping health care teams to see things from a different perspective, which could support improvements in the diagnosis and management of heart conditions. It’s also something that can grow and adapt over time.” Moreover, through the ESC, the patient voice will be heard by up to 95,000 health care professionals throughout Europe.


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Notes to editor

About the European Society of Cardiology

The European Society of Cardiology brings together healthcare professionals from more than 150 countries, working to advance cardiovascular medicine and help people lead longer, healthier lives.

About ESC Congress 2018

ESC Congress is the world’s largest and most influential cardiovascular event contributing to global awareness of the latest clinical trials and breakthrough discoveries. ESC Congress 2018 takes place 25 to 29 August at the Messe München in Munich, Germany. Explore the scientific programme