Unbelievably, it’s now 3 years since we set up IBD Registry Ltd as an independent not-for-profit organisation, following the original launch by the British Society of Gastroenterology (BSG) in June 2013. A birthday is a good time for reflection.
We’re owned and governed by our three parent organisations: the BSG, the Royal College of Physicians and patient organisation Crohn’s & Colitis UK. This unique set-up means that our work is always relevant to clinicians and always focused on serving people with IBD.
The Registry was launched in 2013; I joined as CEO just at the point it was moving out of being a project contained within the BSG into a full-grown company.
My time at the Registry so far has been a whirlwind, full of fascinating contradictions. We’re effectively a start-up organisation, but grown out of a long-running project, with deep links to long established institutions and IBD healthcare teams across the UK. We’re very small, but we serve the whole UK. As employee #1, I’ve been energised by the opportunity to guide the direction we head in, the challenge of recruiting and building the team, and delighted to have had the pleasure of working with our highly experienced clinical leads, who are full-time NHS gastroenterologists. This is so much more than ‘just a job’ for me, with my personal experience of living with inflammatory bowel disease, and a background in business, data and technology.
One of the most rewarding aspect of my job is collaborating with our wonderful partners, because we can achieve so much through working together with purpose.
Our COVID-19 patient risk tool is a great example.
When shielding was announced, we worked closely (and really quickly!) with the BSG, Crohn’s & Colitis UK and health tech services provider AIMES to develop a secure online tool to help identify IBD patients most at risk from COVID-19. Building on the strengths of each partner, we turned it round in just 8 days from concept to launch. Industry partners supported us with funding.
Our tool has helped over 41,000 patients and 174 Trusts and health boards. By giving patients the means to self-assess their risk from COVID-19, and safely sharing that data with their hospital teams, it meant that patients and their clinical teams had the information they wanted and needed at a worrying time.
The past 3 years have been challenging and satisfying. There’s still much to do to achieve our goal of improving the health of people with IBD by collecting and analysing data. But I’m confident that working in partnership will get us there, and I’m looking forward to the journey to come – with you all.