The data dearth hampering heart failure care

Despite affecting 15 million people across the EU, heart failure is poorly understood and many countries have no organised programmes to manage the condition. This is, at least in part, because we are not collecting adequate data.

Collecting accurate and reliable information is essential in improving quality of care and patient outcomes.

Christine Merkel

Why data?

Accurate and comprehensive data on heart failure across Europe are scarce. This should not be the case for a condition that affects 15 million people in the EU. The dearth of data has serious consequences for those living with heart failure, which will continue to be felt for years to come if policies remain unchanged. We know that the management of heart failure is extremely variable, both within and between countries. But in some cases, this is as much as we reliably know. We urgently need accurate and up-to-date data on the numbers of people living with heart failure, what services they have (or don’t have) access to, which health professionals they see and how often. Without understanding these elements, significant and unacceptable variations in care will endure. The limitations of available data may have played a pivotal role in the lack of policies and programmes for heart failure across Europe. For example, only seven of 26 European countries have organised heart failure programmes. This would be unthinkable for some diseases, but progress in heart failure is slow. We know what to do in heart failure, but we are not doing it properly or applying it consistently. Without strong and continued advocacy from all stakeholders, neither data nor policy can be expected to improve.

Why do we lack data in heart failure?

The absence of data stems from many areas, including lack of political oversight and commitment, few processes for data collection and, in some cases, limited understanding of the importance of data collection, evaluation and quality improvement. It will take a major overhaul of both systems and attitudes to establish data collection and evaluation as a central component in heart failure national plans. But it will be an essential step to take. Even in countries where heart failure data are consistently collected – for example, the UK and Sweden – there are still many aspects of care that are unquantified. These include delays to diagnosis, access to a multidisciplinary team, and what follow-up and educational initiatives are available. Despite these gaps, plans and policies in countries with ingrained data collection are, unsurprisingly, light years ahead of those countries without basic data. Plans in these countries are far from perfect, but the data provide opportunities for monitoring and evaluation to make continuous and sustainable improvements in care – benefiting both patients and the healthcare system.

The limitations of available data may have played a pivotal role in the lack of policies and programmes for heart failure across Europe.

State of Play in Heart Failure

Having come up against the issue of scarce or incomplete data time and time again, the Heart Failure Policy Network began research into the State of Play in Heart Failure in 2016. It aimed to understand what is and isn’t working across Europe, including what we do and don’t measure. Without a credible and reliable synthesis of the available data – and understanding of where and why there are gaps – advocacy will continue to move slowly.

The State of Play series looks at three aspects of heart failure care: diagnosis, clinical management and person-centred care and self-management (coming soon). Each is an essential – yet often suboptimal – area of care in heart failure. The three summaries will come together to form a comprehensive State of Play in Heart Failure report, to be launched later this year.

Clearly, generating evidence alone is not sufficient. Tireless work from many stakeholders is required to implement improvements from the data. But without reliable information to begin with, policymakers face an uphill battle to create effective policies to care for the millions of heart failure patients across Europe.

For more about the State of Play and the Heart Failure Policy Network please see www.hfpolicynetwork.eu

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The opinions expressed in this blog are those of the individual authors and do not represent the views of The Health Policy Partnership.