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