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Professor Jelena Čelutkienė (Vilnius University, Lithuania), member of the HFA Board’s Clinical Section and member of the HFA Committee on Patient Care: Delivery and Management, is a keen advocate of encouraging patient engagement at every opportunity.
She says, “Getting patients’ perspectives is important for many reasons. Although healthcare professionals have a lot of experience in treating patients, there will always be something new or different that patients living with heart failure can contribute. Only a small proportion of recommendations in major cardiovascular society guidelines are actually supported by strong trial evidence and many are based on expert opinion.1
Patients can act as advisers and reviewers of guidelines/position papers to add their own opinion and unique expertise. Furthermore, while healthcare providers work with evidence and recommendations to make patients’ lives better, implementation in real life can be difficult and patient guidance on the best approaches can be very helpful. We know the value of providing dedicated educational materials to patients and, although these are generally written by healthcare professionals, the input of patients is insightful—they can make materials clearer and more user friendly for others going through similar experiences. When talking about advocacy at a national and European level, patients can drive changes with more power than healthcare professionals alone. Patients can also support each other, sometimes in very effective ways, for example, through social media patient forums.”
“ESC and HFA have a strong and long history of patient involvement with a range of initiatives, for example, the highly successful heartfailurematters.org website and awareness day together with the patient input in the development of practical recommendations for self-care management of heart failure,” Prof. Čelutkienė continues. “The recent creation of the ESC Patient Forum is another way to share ESC activities with patients and for them to share their views. A special session is planned at our annual HFA Patient Care Workshop in Dubrovnik in October where several patients from the ESCPatient Forum and patient associations will be invited, and we will discuss clinical cases and recommendations together. We are also planning to include patients in our regular HFA webinars to give their insight into how they deal with heart failure every day as further education for healthcare professionals.”
“Now, more than ever, the ESC and HFA are open and ready to include patient representatives in activities.”
Prof. Čelutkienė concludes, “But there will always be more that we can do. Here at Heart Failure 2019, a symposium on Sunday will look at ways that patient and family engagement can be further improved. Presentations will cover patient involvement in clinical research and ESC guidelines. In addition, the current status and perspectives on patient associations in heart failure will be discussed. The ESC Patient Forum together with ESC Associations will continue to explore opportunities and develop even more activities.”
‘Patient and family engagement: compelling need for improvement’
Sunday, 11:00 – 12:30; Agora 1
Our mission: To reduce the burden of cardiovascular disease.
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