Can registries drive better outcomes for diabetes patients? (Guest blog)

A roundtable in Stockholm will explore the opportunities and barriers to diabetes registries

If you have diabetes, your outcomes can vary depending on where you live and how your condition is managed. In this data-driven era, this should be an untenable situation. Information is power, yet healthcare is playing catch-up when it comes to collecting and acting on data to improve results. This has real-world implications for citizens with chronic conditions.

For example, the way diabetes care is organised, and your access to the latest therapies and technologies, may influence how well your condition is controlled. This directly affects your risk of complications, ranging from stroke to blindness. People in other European countries – or even in neighbouring regions or towns – might have better diabetes care and suffer fewer complications. Worst of all, from a patient perspective, some health systems have very little openness on diabetes outcomes and how to improve them.

Measuring and understanding variation in health outcomes is essential to delivering the best possible patient care. It helps to identify areas for improvement and to assess the impacts of clinical practice and care pathways. By making sure data generated in regular healthcare practices serves to feed registers and analyses on real-world patient outcomes, policymakers and payers gain insights on how best to use finite resources, while greater transparency can empower patients and inform clinical decision-making.

Outcomes data, from registers and from patient record data can play a key role in informing policy to shape and prioritise health care provision. Given the complex nature of chronic conditions such as diabetes, these insights can catalyse an evidence-based approach to patient care.

However, despite strong evidence suggesting that real-world data can contribute to better outcomes, their use is far from universal in Europe. Some EU Member States have well-developed registries; some have lower-quality registries; others have none.

To gain insights from leaders in the field and explore barriers to greater uptake, the EFPIA Diabetes Platform and LIF Sweden will host a multi-stakeholder roundtable in Stockholm on 14 June. It is no coincidence that Sweden is the venue for this event: Swedish regions have been collecting and comparing patient outcome data for more than a decade, helping drive improvements in heart attack mortality and addressing regional variation in childhood cancers.

Experts from across Europe will share their experience of establishing registries and address the barriers to wider uptake. They will also tackle practical challenges in developing diabetes registries including how to define the right data to collect, how to apply it in clinical practice, and how to use diabetes data to inform public policy. Funding, ownership and other issues are also on the agenda.

The event is part of a wider effort by the EFPIA Diabetes Platform to accelerate the shift towards outcome-based diabetes care. It is the first of three events in the coming months which will inform a policy paper to be published later this year. Given the fundamental role that registry data could play in the future of diabetes, the Stockholm roundtable is a fitting place to start.

Troels Rye-Andersen

Troels Rye-Andersen is Head of Government Affairs and Patient Relations, Europe, for Novo Nordisk, a co-chair of...
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Dag Larsson

Dag Larsson is currently Senior Policy Manager at LIF, the pharmaceutical trade association in Sweden, where he...
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