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, that they don’t really use it. We now know this is incorrect. At a population level our learning is being dialed in via digital platforms and social media to create neural communities where learning is “De Facto”.
Our heart failure awareness platform is now the world’s largest active patient-led info page on heart failure and is growing exponentially. This community page enables us to talk about advances in heart failure care and therapy from around the world, which helps people engage with the latest therapies and ways of thinking and managing heart failure outside of the clinical arena. We are the conduit into the heart failure patient community.
Our site data tells us that people are significantly more interested in the advances in therapy.
Therefore this is an excellent platform, which is based in the UK which we could market in Europe as it has enabled us to understand our community and their needs. The symptoms and needs of a heart failure patient and their families are borderless, they are the same – whether you are in Greece or Scotland – you just speak a different language and live in a different culture.
Question: Could you please tell us about your recent involvement in the 69th World Health Assembly in Geneva, what were you trying to achieve, what was the outcome, next steps and so forth?
I was invited to present at an event hosted by World Heart Federation, during the World Health Assembly in Geneva. The topic was access to heart failure services in under-resourced settings. This gave me the chance to discuss solutions to problems, that didn’t involve huge investment, but looked to create systems where the healthcare professional and patient relationship was improved to benefit the patients’ self-care of their condition. It became apparent when speaking at this level that the art of the healthcare professional being the patient’s coach is an undiscovered therapy option.
As somebody managing heart failure myself it is my duty to ensure the patient voice is heard loud and clear, putting the context into heart failure, to ensure and to remind the audience why they do what they do, and they are all an important cog in the patients’ multi-disciplinary team.