On rolling up our sleeves and cracking on

Clinical teams know that the better the local patient information they have, the better the care they can give their patients. But setting up data collection systems in the NHS can be challenging. The IBD Registry team think they have some solutions.

It’s easy to get distracted by current events, and I’m sure I’m not alone in compulsively checking the news feeds constantly over the past week. Of course we need to understand what impact Brexit will have on our businesses, our clients, the NHS and the patients it cares for, but it will take time to unfold. I’ve realised that getting caught up in a worry cycle about stuff that’s beyond our control isn’t doing our mental health any good. I think the best thing we can do is to get on with our day jobs and mine is to make things better for patients.

A big Dovetail focus at the moment is encouraging participation in the IBD Registry, which aims to help hospitals improve their IBD services, support research into both the causes of and new treatments for the condition, and to improve our understanding of how people’s lives are affected.

At the British Society of Gastroenterology conference in Liverpool last week, outgoing BSG president Dr Ian Forgacs called on every IBD team in the UK to join in the Registry.

Part of the ambition is to transform the way IBD teams collect clinical information, moving from an annual audit to continuous data collection for audit and quality improvement at the point of care. This culture change is a challenge in itself; hospital teams are overstretched and there’s not much money around.

But the clinical teams who work every day to improve the lives of people living with IBD know that the better the information they have locally, the better the care they can give. Pooling that information nationally allows for benchmarking and becomes a powerful real-world data resource to make sure people all over the country are getting the best possible care. The amalgamated data will also be hugely valuable to researchers and for safety monitoring. As Dr Fraser Cummings put it, “ In my service in Southampton I can help around 5,000 patients; as clinical lead of the IBD Registry I can potentially help 300,000 or so patients across the UK.”

It’s a bold project, led by good and talented people in a spirit of real cooperation. The main sponsor is the BSG, working closely with other professional bodies with an interest in IBD as well as patient groups Crohn’s and Colitis UK and CICRA – Crohn’s in Childhood.

The latest partner organisation is an Industry Working Group, with the aim of working together to improve patient outcomes by supporting the IBD Registry. People from Tillotts, Takeda, Janssen, Dr Falk and Biogen have volunteered to be part of this group and to represent the whole IBD sector. The group will help the Registry to build on the great support already provided by a number of companies: AbbVie, Hospira, MSD, Napp, Otsuka, Pharmacosmos, Shire, Takeda, Tillotts and Vifor.

There’s a real sense of momentum building, and the Registry has the potential not only to transform and improve outcomes for people with IBD across the UK but also to build a blueprint for the way chronic diseases are managed. It’s a project that can only succeed through effective and purposeful collaboration. And I don’t know about you, but in these turbulent times I really welcome the chance to roll my sleeves up and crack on with something useful!