Nick Hartshorne-Evans

As a successful entrepreneur and business owner for more than 11 years Nick was diagnosed with Heart Failure in January 2010. His experience as a patient stimulated him into developing the only dedicated Heart Failure patient group in the UK led by patients – The Pumping Marvellous Foundation. Nick is also President of iHHub, which has attracted significant attention from international partners where it advocates for the global patient voice.

After significant learning about not only the condition but also the health economy Nick narrowed his focus to developing and evolving a charity that delivered patient led solutions created by the patients themselves. The charities knowledge and value comes from the beneficiaries and is a valuable resource to health economies and has attracted international exposure. Recruiting driven and innovative beneficiaries is a key driver for the foundation.  The Pumping Marvellous Foundation is seen as a global reference group for the heart failure patient community.

Nick regularly engages and involves himself in International, European, UK and regional patient advocacy along with delivering patient led collaborative solutions. He is a patient expert with NICE, a steering committee member on the NICE Chronic HF guidelines, patient lead for the European Heart Failure Policy Network, a member of the NHS England CRG for invasive cardiology, stakeholder and mentor in NHS England’s clinical entrepreneur programme and a Honorary Research Fellow at the University of Liverpool’s Management School. His peers and partners across the health channels see him as a “Global Patient Opinion Leader” and an “Over the Horizon Thinker.”

Question: As an active leader in the heart failure conversation and the instigator of the Heart Failure Aware campaign, could you tell us more on what it’s trying to achieve, target, why is it important, and how you could see it rolled out across Europe? Currently we are facing a number of large unmet challenges in heart failure across Europe. There is no parity in access to care, variations exist across Europe; I say this because we know what we should be doing, but we’re not doing it. 15 million people in Europe have heart failure; it’s a tsunami that will hit the shores of Europe’s health systems, it’s not on the agenda – politically, economically or even amongst the public. It is a poor relation in comparison to other conditions. One of the challenges we face includes a lack of access to innovation across all therapeutic areas in heart failure. Patients when diagnosed aren't generally aware of the therapy options and pathways. Heart failure patients don't know until they have been managing their condition for a long time, of the treatment options potentially available to them such as cardiac devices. Awareness of medtech products and therapies is very low in the heart failure patient community, and it’s even worse around the innovations. The reason I founded the Pumping Marvellous Foundation was because patients and their families were under-served and were in need of knowledge, information and techniques to manage their heart failure – and an essential element to this is knowing what is available, our patient community call this ‘hope’. We developed a heart failure community platform on Facebook because it was free and social media plays a big part in people's lives. Recent studies have suggested, that our assumptions around older persons use of social media is wrong,...