The IBD Registry is delighted to be one of the partners in IBD UK, which includes 17 professional bodies, royal colleges and patient organisations working together to improve care and treatment for everyone affected by IBD.
IBD UK developed the IBD UK Benchmarking, which first took place in 2019 and is designed to encourage IBD services to recognise what they are doing well and identify where they need to improve. It is comprised of the IBD Patient Survey for people with IBD and the IBD Service Survey for IBD services. The Benchmarking is taking place again in 2023, with both surveys closing on 11 September and reports to follow.
The IBD Registry is proud to be leading on the information governance and data management of the surveys on behalf of IBD UK. We continue to bring together health data from people with IBD across the UK to help improve treatment and care, and support research. More information on how your data is stored safely and securely is available here.
The IBD Patient Survey provides an opportunity for people with IBD to anonymously share their experiences of treatment and care to establish the first accurate picture of IBD care and treatment in the UK since before the COVID-19 pandemic. This, combined with IBD services self-assessing against the IBD Standards, provides a powerful and unique opportunity to raise standards of care for everyone with IBD.
The results of the surveys will be benchmarked against the IBD Standards and compared to results from the last surveys in 2019, which were outlined in the IBD UK report Crohn’s and Colitis Care in the UK: The Hidden Cost and a Vision for Change. Find out more here.