Global Heart Hub joins EPF

Global Heart Hub became a Full Member of EPF in April 2021. We sat down with them to discuss their mission and vision and what they will bring to the EPF community!

What is the mission of the Global Heart Hub?

The Global Heart Hub is the first international non-profit organisation established to provide a voice for, and to represent, those living with or affected by heart disease. We are an umbrella organisation of heart patient organisations, created as an alliance to unite patient groups from every country in the world. Our combined mission is to raise awareness of heart disease and the challenges it presents in everyday life. The Global Heart Hub is a platform for heart patient organisations to share their views, learn from each other’s best practice, unite and work together on common advocacy goals, share resources and build a strong and supportive community. We aim to increase awareness and understanding of the many heart conditions that exist, advocate for optimal care pathways to ensure optimal patient outcomes for enhanced quality of life, longevity and healthy aging.

What is the history of the organisation?

The origins of the Global Heart Hub was the establishment of an international alliance of heart patient organisations in 2014 with the specific purpose of addressing the needs of those living with heart failure (a specific heart condition). In 2019, this alliance expanded to all heart conditions and was re-launched as the Global Heart Hub. Currently, 60 heart patient organisations are affiliated to the hub and over half of these are from Europe. Over the past year the Global Heart Hub has been actively building its network of affiliates and the strategy is to build the organisation by bringing patient organisations together around common interests in specific cardiovascular conditions or a number of related conditions. These special interest groups become ‘Patient Councils’ and currently the Global Heart Hub has patient councils in Heart Failure, Valvular Heart Disease, CardioDiabetes and Cardiomyopathy. The short term aim is to develop a further ten patient councils over the coming years. Collectively these patient council create a unique platform to represent the issues and challenges faced by heart patients and their carer’s.

Which achievement are you most proud of in your advocacy work?

Over the past year, among the most significant achievements of the Global Heart Hub has been the development and launch of a ‘patient to patient’ Covid-19 awareness campaign. From the outset of the Covid-19 pandemic, those living with heart disease have been significantly impacted. Not only have pre-existing cardiac conditions contributed to the mortality rate but the fear of contracting the virus paralysed heart patients to the extent that they were reluctant to visit their doctor or hospital even when experiencing symptoms of a cardiac emergency. The Global Heart Hub conducted an international survey of heart patients which confirmed that the fear of contracting Covid-19 was a major concern and this fear was so strong that patients were delaying in seeking medical help and even dying rather than visiting their doctor or hospital. In May 2020, the Global Heart Hub launched the #JustGo Campaign which encouraged patients to put their heart health before their fear of Covid. The campaign messages were translated in 14 languages and generated over 8 million opportunities to see the messages across traditional and social media. Many patient organisations received feedback that these messages were influential in providing the necessary encouragement to patients at times of emergency. In March this year, given that further waves of Covid-19 were affecting different countries, the Global Heart Hub campaign was re-launched with similar and further messages for the heart patient community.

What is the most common misconception regarding your disease area (if not a national coalition)?

Despite the scale and burden of cardiovascular disease globally, it’s surprising that unlike other disease areas, the patient voice in heart disease has been largely disconnected and unheard. The Global Heart Hub is the first effort to create a patient-led community where the focus is on amplifying the patient and carer voice. One of the biggest challenges for 2021 and in the coming years will be to develop capacity and capability in the heart patient community so that patients can advocate to address the many unmet needs in the patient journey from disease awareness through early detection, early diagnosis and equal access to early and optimal treatment and recovery. One of the priorities of the Global Heart Hub is the promotion and development of advocacy training for heart patients. We have already begun by developing a bi-monthly ‘advocacy inspiration’ series where we share, learn from and are inspired by the experiences and achievements of patient advocates across other disease areas. In October this year, we aim to launch and deliver our inaugural annual ‘two-day virtual advocacy bootcamp’ for the heart patient community.  

What will you bring to the EPF Community? What would your organisation like to contribute?

Becoming a member of the EPF has been an important step in our journey to create a representative voice of heart patients. In the past year, the Global Heart Hub has also become a member of the World Heart Federation, the US National Forum for Heart Disease & Stroke Prevention and the Global Coalition for Circulatory Health. Given the needs of heart patients in Europe, the EPF offers us a great opportunity to raise the profile of heart disease and the needs of our patient community. Equally the EPF offers us a huge opportunity to avail of EPF services and programmes which will assist us in our growth and development. As new members of EPF representing a disease area which affects so many Europeans, I hope we can bring new insights from a patient perspective and add value to the wider mission and aims of EPF.

For more information about Global Heart Hub, visit their website.