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Neil Johnson’s journey in creating a global heart patient network

Neil Johnson’s passion for better heart and stroke care began over 30 years ago, when he took over as Chief Executive of Irish heart and stroke care charity Croi (Gaelic word for heart). Since then, Neil has founded the Ireland National Institute for Prevention & Cardiovascular Health and is executive director of the Global Heart Hub (GHH).

Croi was then a regional foundation established to raise funds to support cardiac care delivery on Ireland’s west coast. “At the time there were significant regional inequalities in cardiac diagnostics and cardiac surgery in Ireland”, said Neil. “My job was to find ways to better resource service delivery on the west coast, but I soon realized that there were larger issues at hand.” Witnessing these inequalities fueled Neil’s determination to make a difference not just in Ireland, but on a global scale.

The Global Heart Hub emerged when Neil realized that the unmet needs of heart patients were universal, transcending geographical boundaries. There was a pressing need for a unified platform that could bring together heart patient organizations worldwide. Together with some of his Irish colleagues, Neil established GHH as the first such entity in 2019.

“I’m most passionate about connecting patients worldwide and building their capacity to create impact in their own health systems”, added Neil. GHH recently launched an Academy which offers a range of programs in organisational development, communications, advocacy and health technology assessment.

GHH is focused on building advocacy, mapping patient experiences in the US, Brazil and Australia, and shared decision-making in valvular heart disease in Amsterdam. Patients play a pivotal role in CVD care and this will be highlighted at the upcoming 2023 Unite Summit in November 2023 in Barcelona. Patients, key opinion leaders, clinicians and policy-makers will discuss common challenges in early access to diagnostics and early detection across different types of CVD, identifying solutions and discussing how to set up health systems to better tackle CVD and invest for the future.

GHH recently welcomed its 100th patient affiliate organization. Building a connected heart patient voice in Asia is one of GHH’s upcoming priorities. “We need a paradigm shift in the public understanding of CVD”, said Neil. “A significant public perception is that heart attacks and strokes are inevitable later life occurences and the result of poor lifestyles. The reality is CVD is not just about lifestyle – it can be genetic or inherited; heart attacks and stroke can and do occur at any age. We need greater focus on prevention through early detection and earlier interventions.”

The Global Heart Hub is an APAC CVD Alliance strategic partner. We welcome other heart patient groups in Asia to partner with us.


Neil Johnson’s journey in creating a global heart patient network

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