Global Heart Hub Heart Failure Patient Council

Heart failure is a serious chronic condition where the heart cannot pump enough blood to support the needs of other organs in the body. The most common causes of heart failure include coronary heart disease, myocardial infarction (heart attack), congenital heart defects, or damaged heart valves.

Symptoms of heart failure include shortness of breath, extreme tiredness or no energy, dry cough, swelling in the ankles or feet, sudden weight gain and rapid heartbeat or palpitations. However, it is estimated that up to 30% of patients living with Heart Failure have no obvious symptoms.

It is estimated that 60 million people worldwide are affected by heart failure, but with the right medication and lifestyle, it can be managed.

Heart Failure Awareness Month

May 2023 #HighlightHeartFailure and Save Lives

The 2023 Global Heart Hub Heart Failure Awareness Month Campaign aims to educate the public on Heart Failure.
We seek to raise awareness of the signs, symptoms, and risk factors associated with heart failure, as well as the importance of early detection and effective management.

Our Mission: Raising Awareness of Heart Failure

The first patient council to be established by the Global Heart Hub was the Heart Failure Patient Council. This council is an alliance of patient organisations from across the globe, working with heart failure patients and their carers. A priority of the council is to raise awareness of heart failure, promote public and healthcare education and advocate for policy action in an insufficiently recognised and increasingly burdensome disease area.

Our Goals:

The Patient Council is united in the view that heart failure is poorly recognised and not well understood by both the general public and healthcare professionals.

There is global consensus that:

  • The early signs and symptoms of heart failure are often dismissed as normal ageing and thus overlooked as early presentation of the disease.

  • There are significant gaps in access to diagnostics in primary care, which result in inequities and delays in diagnosis. Heart failure diagnoses are frequently made late and often the patient has developed acute disease.

  • There is considerable variation and inequity of access to international best practice and specialist care, including access to heart failure nurse specialists (both in hospital and in the community).

  • Failure to recognise and treat heart failure appropriately is contributing to high hospital admission and re-admission rates, with consequential economic burden on healthcare systems and a huge impact on patients and carers.

Heart Failure Guide cover page

Heart Failure: Your Guide To Your Journey

Heart Failure Patient & Caregiver Charter

Achievements to date:

  • Launched the Heart Failure Guide, based on the European and American guidelines agreed by leading experts in heart failure as well as discussions with representatives of patient groups worldwide. The guide is designed to support individuals who have been newly diagnosed with heart failure, those who are living with the condition, and their caregivers.

  • Supported 4 localizations of the GHH Heart Failure Patient and Caregiver Charter in 2022 for Australian, USA, Brazilian and Lithuanian, which are endorsed by the national clinical societies.

  • Launched the International Heart Failure Patient and Caregiver Charter in June, 2022, which was translated into 15 languages and endorsed by over 30 patient organization affiliates from the Global Heart Hub Heart Failure Patient Council.

  • Activation and execution of the global annual Heart Failure Awareness Campaigns since May 2018. Learn more about the 2023 Heart Failure campaign here

  • Responded to the COVID-19 pandemic by developing information resources for use by patient organisations and participating in a global ‘Patient to Patient’ #JustGo campaign, encouraging those with cardiac symptoms to seek help despite fears of COVID-19 (2020 – 2021). Read more here

  • Hosting of annual patient organisation capacity building academies. The first academy was held in Galway, Ireland in 2015.

  • Global Heart Hub Heart Failure Patient Council Lead is a member of the Steering Committee of the Heart Failure Policy Network and actively engages in the activities around the policy by empowering Patient Advocates and Patient Organization Leaders to become a valuable stakeholder.

  • As part of the collaboration with The Health Policy Partnership, the Heart Failure Council has launched:

    • Handbook of Multidisciplinary and Integrated Heart Failure Care (September 2018).
    • Heart Failure Country Barometers – Europe (April 2018).
    • The European Heart Failure Policy Network Toolkit (September 2015).
    • Early Diagnosis patient education booklet (December 2015).
    • European written declaration on heart failure campaign (December 2015).

Currently, members of the Heart Failure Patient Council include:

ABRAF
American University of Beirut Medical Centre (AUBMC)
HFLeb_logo with a slogan
Sirdies Lithuania
SzivSN Hungary

Join the Council:

Aistė Štaraitė

Chair, Heart Failure Patient Council

For questions on the Global Heart Hub or how you can join, contact: aiste@globalhearthub.org