Neil Johnson

Members at Large, Patient Organisations

Ireland

Neil Johnson is a founder and the current Executive Director of the Global Heart Hub (www.globalhearthub.org), the first international alliance of heart patient organisations. The Global Heart Hub aims to provide a voice for those living with or affected by cardiovascular disease. Neil was Chief Executive of the Irish Heart & Stroke non-profit organisation, Croí (www.croi.ie) from 1992–2023 and he initiated and led the establishment of the Irish National Institute for Prevention and Cardiovascular Health – an independent medical research and education institute – (www.nipc.ie) from 2014–2023. NIPC has since spearheaded the development & delivery of a suite of MSc postgraduate courses in CVD Prevention at the University of Galway (Ireland) and is leading a significant program of international epidemiological research projects under the direction of Prof David Wood and Prof Bill McEvoy. Neil has extensive senior management and development experience in the social enterprise sector, over 32 years of which are in the field of cardiovascular health – working across prevention, education, patient engagement, service innovation & implementation and patient advocacy. He is a founder of Ireland’s first Heart & Stroke Centre dedicated to cardiovascular health and wellbeing which has been accredited by the European Society of Cardiology as a European Centre of Excellence in CVD prevention. He holds a first-class honours master’s degree in psychology. He is an Honorary Clinical Fellow of the School of Medicine at the University of Galway, Ireland, and a Fellow of the National Institute for Prevention and Cardiovascular Health. Among awards he has received, in November 2023, the University of Galway awarded him an Honorary Doctorate in Laws (LLD) in recognition of his work in the field of cardiovascular health promotion and patient advocacy. Among his other awards and recognitions are: Marketing Person of the Year Ireland (2007); Galway Person of the Year (2007); NIPC Fellow (2019); World Heart Foundation, Heart Hero (2022); and European Patient Forum, Inaugural ‘Hall of Fame’ award (2023). Throughout his career he has worked closely with individuals and families affected by cardiovascular diseases. In 2019 he established the Global Heart Hub (GHH) as the first umbrella organisation of international heart patient organisations. Currently, GHH has 126 patient organisation affiliates from across 41 countries. In 2023, he was instrumental in establishing Heart & Stroke Voice Ireland, a national alliance of heart patients, stroke survivors and carer’s seeking to represent the unmet needs of this community. He is a strong proponent of patient engagement in all aspects of healthcare. He has a keen interest in patient organisation capacity and capability building and he is a regular patient advocate contributor to international healthcare, industry and research advisory boards.

Motivation

I am honoured to have been recommended by the WHF Nomination Committee as a candidate for election as a patient organisation representative to join Jagat Prakash Singh Narula (President) and Amam Chinyere Mbakwem (Vice President) on the WHF Board 2025-26.

Firstly, I wish to commend the WHF for their decision to include patient organisation representation on the board. This is an important signal to those with lived experience across the world that the organisation recognises the importance and value of the patient voice as a stakeholder in the global cardiovascular community.

Increasingly, patient organisations are playing an active role across the healthcare landscape. They offer a platform for patients to connect and learn from each other’s health journey. Equally they provide a forum to assimilate patient insights and patient experiences which not only contribute to improved self-care but which can also inform healthcare practice and policy.

Over the past 30 years, I have been working in the civil society sector addressing the burden and challenges of cardiovascular disease and supporting those living with or affected by heart disease and stroke. Over this time period, my daily work has involved engaging with patients and their carers. I am a passionate advocate for the inclusion of the patient voice as an equal stakeholder in healthcare and across the care continuum. However, unlike in most other disease areas, the patient voice in cardiovascular disease is underpowered and underdeveloped. As such, the full potential of its impact, especially in advocacy and policy change is yet to be seen.

I have been a member of the World Heart Federation for almost 10 years (formerly as CEO of the Irish Heart & Stroke Foundation and currently as Executive Director of the Global Heart Hub) and I have been a member of the Global Coalition for Circulatory Health for over 2 years. I am a strong advocate for, and supporter of, the vision and mission of the World Heart Federation and I am fully committed to its core values. I believe I have the relevant experience and expertise necessary to make a meaningful contribution as a board member. I would welcome this opportunity to represent the patient and civil society perspective in an objective, informed and balanced way at board level. I offer myself for consideration by the membership for election to the board and if elected I commit to serve with honour, integrity and diligence.

Sincerely,

Neil Johnson

Global Heart Hub

Ireland

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