British Society for Rheumatology publishes framework to empower patients to take control of their care.

BSR-2015-250A lack of national data and indicators in the UK makes it difficult for rheumatologists to demonstrate effective care for patients with inflammatory arthritis. This also leaves patients without the information they need to take control of their care. As a result it is difficult for commissioners and those designing services to understand rheumatology and consequently, chronic and complex care of rheumatic diseases has a low priority.

These are the key findings from a British Society for Rheumatology (BSR) visit to the Karolinska Institute in Sweden and subsequent report, published today – ‘Integrated information to support transformation change’ which outlines plans to ensure patients have the information they need to make informed choices about their treatment.

The report explains that the development of a more comprehensive registry system in the UK would benefit patients, clinicians and researchers. Whilst there are a number of similarities between the Swedish and UK healthcare systems, such as the challenge of co-ordinating care across various hospital and community settings, UK rheumatologists are struggling to collect data for reporting and benchmarking of care and commissioning is failing to prioritise patients with chronic and complex rheumatology care.

One of the most impressive aspects of the Swedish Rheumatology Quality registry (SRQ) system is how it places patients at the heart of their care and allows them to provide updates on their condition and monitor the disease course and response to treatments over time. This infrastructure exists in parts of the UK, but the BSR wants to ensure it is adopted on a national basis and intends to pilot a system later this year.

BSR President, Prof. Simon Bowman, noted that ‘ the BSR has a proven track record of successfully running registry systems over the past 15 years and it’s important that we continue to develop them to ensure they provide us with the data we need to drive service improvements. Enhancing patient engagement and outcomes forms a key part of this and we will use what we have learnt from the Karolinska Institute to take this forward.’

The BSR report – ‘Integrated information to support transformation change’ draws on the internationally-renowned Swedish Rheumatology Quality registry system and is based on the findings of a UK delegation which visited the Karolinska Institute in 2015, with a view to introducing their learning into UK practice.

The report is available to download now.

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