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New standard measures to improve care for patients with IBD developed by international collaboration including Oxford AHSN

New standard measures aimed at improving care for thousands of patients living with a long-term condition have been developed by an international collaboration including the Oxford Academic Health Science Network.

Since 2015 the Oxford AHSN has been working with the International Consortium for Health Outcomes Measures (ICHOM) to develop a ‘Standard Set’ of clinical outcomes measures for inflammatory bowel disease (IBD).

IBD includes ulcerative colitis and Crohn’s disease – long-term chronic conditions that involve inflammation of the gut. IBD affects about one person in 250 – approximately 12,000 in the Oxford AHSN region and 250,000 in the UK.

‘Standard Sets’ are standardised collections of measures aimed at improving patient care relating to specific medical conditions by enabling quick and easy comparisons. The Standard Set approach aims to shift clinical practice towards a system based on outcomes rather than simply processes.

ICHOM brings together patient representatives, clinical leaders and registry leaders from all over the world to develop these Standard Sets, of which 21 have been developed since 2012.

The Oxford AHSN commercial team secured grant funding from AbbVie in the United States for $100,000 to support some of the work in developing the IBD Standard Set.

This involved establishing a truly international panel of clinical experts and patient representatives – they were drawn from 12 countries: Australia, Belgium, Brazil, Canada, China, France, Germany, India, the Netherlands, South Korea, the United Kingdom and the United States. The panel was led by Professor Simon Travis, Professor of Clinical Gastroenterology at the University of Oxford.

The panel spent a year generating a series of standardised outcome measures – including patient-reported outcome measures (PROMs) – relating to the things that really matter to people with IBD. The group systematically reviewed existing literature, registry data and practices for assessing outcomes of patients with IBD and their therapies, including surgery.

The final agreed IBD Standard Set was published on 12 December 2016. Details can be found here.

It provides a template for meaningful, comparable, and easy-to-interpret measures that can be implemented in any healthcare setting, anywhere in the world. It includes a simple patient-reported outcome tool that takes, on average, just 30 seconds to complete, as well as data on anaemia, steroid use and other measures, with a timeline for regular completion.

Planning is now underway with ICHOM to disseminate the IBD Standard Set across the Oxford AHSN region. The Oxford AHSN hopes to work with ICHOM on other Standard Sets in the future.