HEQ speaks to Ed Harding, Strategic Adviser to The Heart Failure Policy Network about the organisation’s efforts to bridge the gaps in heart failure care and the importance of raising awareness of cardiovascular diseases, which are a leading cause of death worldwide.
Within healthcare, there are inevitably disparities in the way common conditions such as cardiovascular diseases are supported, from community care through to policy level. Improving public awareness around certain conditions, implementing preventative strategies at the community level, and continually advocating for progression in research and treatments can, undoubtedly, improve patient outcomes and reduce the economic burdens on overstretched healthcare systems.
According to The Heart Failure Policy Network, meaningful improvements across heart failure policy and care are urgently needed. One in five people will be diagnosed with heart failure at some point in their lives, a condition whereby the heart is too weak or stiff to sufficiently pump blood around the body. It is the biggest cause of preventable hospitalisations in the EU. Coupled with the long-term health needs of an ageing population, and patterns in other intrinsically linked conditions, it is not surprising that cases of cardiovascular disease (CVD) are increasing. As a multidisciplinary platform, The Heart Failure Policy Network (HFPN) is committed to shoring up support in heart failure policies and practices in order to improve the lives of patients and reduce the growing burden of CVDs.
To find out more, HEQ spoke to Ed Harding, Strategic Adviser to the HFPN.
How did the Heart Failure Policy Network come to be founded?
The Heart Failure Policy Network was founded in 2014 following a different piece of work we had done in diabetes. We were tasked with bringing together key stakeholders – including clinicians, NGOs, and patients – to look at what was required of diabetes policy and what the potential of effective, comprehensive management of diabetes was, versus the reality of what actually happens. Because this was guided by decision-makers at the time it was well-received by stakeholders who felt it was a very powerful addition to the diabetes policy at work.
In late 2014, and 2015, we began speaking to experts as well as patient advocates and the message came out loud and clear that heart failure was absent at the policy level. Equally, it did not have the foundation of policy messaging, summation of evidence and consensus required to really cut through into public life. We discussed the terms of reference for the group and agreed that we would be independent: nothing we would do would go to sponsors for internal review, nor would sponsors have the right to veto. Novartis was the initiating sponsor, but right from the beginning, it was intended that we would be multi-sponsored and each sponsor, which has included St. Jude Medical, AstraZeneca, Vifor Pharma, Boeringer Ingelheim and Bayer AG, would follow the same terms of reference. Once these terms of reference were drafted, a funding agreement with Novartis as the initiator was established and we wrote our first offering called The Heart Failure Policy Toolkit, which was published in 2015.
Following the launch in the European Parliament, a number of actions then fell to us. Sometimes, we take recommendations directly to policymakers in the case of a European declaration or national work. We continue to explore the research and provide messages about what heart failure is the associated challenges, and the actions governments need to take. For example, during the 2019 MEP elections, we co-produced a campaign with the Global Heart Hub where national advocates targeted MEP candidates to encourage them to sign up for a heart failure pledge.
All of our members provide their time for free, whether they are patient advocates, clinicians, or external experts, and this is really a key indicator of the importance of what we are doing.
What are the key challenges facing the diagnosis, screening, treatment, and support for heart failure?
Healthcare systems often struggle with chronic disease management and heart failure is no exception. The implementation of guideline-recommended care is often rare and heart failure patients face fragmented care along the patient pathway. The greatest challenges and missed opportunities include diagnosis and clinical management, hospital discharge and follow-up as well as patient empowerment and advanced care planning.
There are leading models of multidisciplinary and guideline-based care implemented by teams of specialist nurses within community care that have been shown to reduce hospital readmissions by up to 30%. Some studies go even higher. Yet, we see this common pattern across western societies whereby we do not seem to fully leverage the potential of proven guideline-based care in risk management.
When patients do develop heart failure with the onset of symptoms, the first barrier they typically experience is a lack of awareness around how the condition manifests. Symptoms such as swollen ankles, shortness of breath or extreme fatigue can often be dismissed as a sign of ageing or even misdiagnosed. Because there is not enough awareness around these symptoms, it can take months before patients receive a clear diagnosis. Similarly, once they are referred for tests such as an echocardiogram, it can take a long time for them to be seen. While symptoms can be an initial indicator of heart failure, the echocardiogram gives an imaging of the heart and its structures and allows for a definitive diagnosis of the type of heart failure that a patient has.
It is, unfortunately, not uncommon to hear of patients who arrive at acute settings with decompensated heart failure (DHF). Essentially, their heart failure has progressed to the point where patients can put on a large amount of fluid and have severe breathing difficulties. Even then, in those acute settings, it can be misunderstood that they actually have a heart problem. Once patients are discharged from the hospital, they should receive intensive reablement care, but that is not always the case.
Why do you think there is a lack of awareness around heart failure and other cardiovascular diseases at both patient and policy level?
If you look at studies across Europe, we know that we are not very good at helping people who live with established cardiovascular disease. We need to improve our understanding and map where those high-risk cardiovascular disease patients are and try to progress through more intensive risk-factor management.
If you consider some of the most prevalent conditions that people are familiar with such as COPD and diabetes, the number of admissions that relate to heart failure are just absolutely astronomical, far beyond what we see for other well-known conditions. Of course, those conditions are important, but you have to wonder why, and indeed how, governments do not have a strategy around heart failure. Anyone who has worked in healthcare will know how much of a burden heart failure can be on other organs, and on the rate of hospital admissions which are so critical to reduce. To have any hope of creating a sustainable healthcare system, we have to keep people out of hospital as much as possible, not only because this can be a traumatic experience to go through, but also because it is incredibly expensive. It is also a marker of the seriousness of exacerbation, so a lot of effort should be going into managing people in the community, monitoring them, and keeping them out of hospital. According to the Organisation for Economic Co-operation and Development (OECD), and papers by the World Economic Forum, heart failure is one of the biggest causes of preventable hospital readmission.
Changing policy is hard and takes a long time. There is a very serious barrier in the form of complacency and ignorance about cardiovascular disease and its true role in our healthcare system. There is a study that was sponsored by AstraZeneca and conducted by the World Heart Federation whereby national deputies were interviewed about the level of awareness of heart failure and heart failure symptoms and whether or not they thought it was a cause of hospital admissions. It is quite shocking that so many elected officials appear not to know that heart failure is a leading cause of hospitalisation. It speaks to this much bigger fundamental misunderstanding about the role of CVD and heart failure, for many years it has been viewed as an end-stage condition and something untreatable.
In virtually all western countries, cardiovascular conditions are associated with, or are, one of the leading causes of hospitalisation. It is hard to get your head around why governments would have a strategy around, for instance, oncology, but not CVD. There is a worrying level of unreadiness and lack of preparedness for CVD, and an ageing population with quite serious underlying chronic conditions that can be managed.
In the last two decades, the treatments for heart failure have evolved enormously. Although one in five of us are diagnosed with heart failure at some point in our lives, there are a lot of management and therapeutic options that can be called upon. A lot can be done, but it does not just happen out of nowhere, it requires systems and strategies.
The message I would convey to anyone reading this article is that their government, or their region, should at least have a position, even if it is not a strategy, on heart failure.
The Heart Failure Policy Network recently hosted its inaugural Heart Failure Policy Summit; how did it go?
This summit went really well, and we had a good turnout. I am excited about its potential for the future to bring together, energise and inform the heart failure community and to be able to communicate and explain the case for change to decision-makers in a different way.
The heart failure community is an incredible community with so much passion, knowledge, and determination, something we have observed for many years. There has been a lack of learning and peer exchange between different countries in different sectors, so one of the simplest aims of the summit was to create a place where, once a year, we can bring together patient advocates, healthcare professionals, clinical leaders, policymakers, and other key figures in system transformation. People can learn from key case studies and discuss what works in terms of care delivery but also how to advocate and communicate with decision-makers in their respective countries.
One of the aims of this year’s summit was to look at heart failure alongside active ageing, health inequalities, health system sustainability and resilience, and post-COVID-19 recovery. How is heart failure impacted by these topics and vice versa?
In the context of an ageing society, there has been a belief that cardiovascular disease is a somewhat inherent part of ageing and something that only affects people of retirement age. However, from an economic point of view, the retirement age is creeping up way past 70 across Europe and the western world, so you can expect a large number of those people in work to be living with a cardiac condition or cardiovascular disease, and that will include heart failure.
Prolonging life expectancy is a goal for everyone, it is a fundamental part of the social contract that our societies help us to be healthier and live longer and in return, we do all the things we are supposed to do – we obey laws, we turn up to work etc. Cardiovascular diseases are intrinsically linked to the slowdown in life expectancy across the West, and in some countries, even a decline. Not only is this due to risk factor management – including smoking, blood pressure and obesity – it also goes all the way through to the latest stage treatments and therapies, including those for heart failure. We have to understand the whole of the cardiovascular spectrum, and prevention at every stage, if we are really going to get our heads around what is happening in cardiovascular disease. Up until now, although treatments for cardiovascular disease have greatly evolved, it has been very widely misunderstood.
Prior to the COVID-19 outbreak, heart failure advocates were making great progress and winning concessions. Significant progress was made in Poland, for example, between the Polish Cardiac Society and their minister at the time, where they managed to implement multidisciplinary care teams and invested in specialist heart failure nurses, which was quite revolutionary. Our colleagues in Spain managed to get heart failure included in the country’s new cardiovascular strategy and in 2019 the UK’s NHS Long Term Plan also listed heart failure as a priority area. There was a real sense that governments were listening, but then came the pandemic. This not only completely disrupted ministerial-level focus but destroyed so many local care teams in heart failure which had been carefully and painstakingly built over the years. We are now trying to help colleagues understand how to get back into the policy game and speak to the decision-makers in a world ruled by infectious disease control because heart failure is intrinsically linked to crisis response and COVID-19.
A high level of mortalities have been linked to heart failure because many patients developed the condition through contracting COVID. Some patients may have had heart failure previously or cardiac symptoms, but it is not a separate issue, it is intrinsic to managing hospital admissions. We are helping our colleagues to understand how they can create this connection in the minds of decision-makers who might say they do not have the headspace to deal with heart failure, but in fact, that is a very serious oversight. Above all, you need to keep these patients safe and well and provide their care without exposing them to infectious risks.
For more information about the Heart Failure Policy Network, visit www.hfpolicynetwork.org
This article is from issue 20 of Health Europa Quarterly. Click here to get your free subscription today.