Professor Shaji Sebastian is a consultant gastroenterologist and inflammatory bowel disease (IBD) service lead clinician at Hull University Teaching Hospitals Trust, and the gastroenterology specialty co-lead for the NIHR local clinical research network for Yorkshire and Humber. Here he outlines how the IBD service has successfully integrated research into clinical care.
The pandemic has brought into sharp focus the vital role of research done at scale to provide solutions and hope to the communities we serve. It has also highlighted the inequalities in research access to patients and the ability of teams across the country to deliver research. We hope our example of developing a fully integrated clinical and research inflammatory bowel disease service will help others seeking to better integrate research into clinical care
Why we prioritised integrating research with care
As a team we have a strong belief that a research-active service will deliver better care and in time will deliver better outcomes for patients with a chronic lifelong illness such as inflammatory bowel disease (IBD) for which currently there is no cure. We knew that the care of IBD patients in our area needed to improve and investing in research and innovation could be the vehicle for this. We also recognised that we have key allies in our patients who were 'research virgins' having not previously had the opportunity to contribute and be actively involved in their own care.
How we did it
We set out with our first of three 5-year strategies in 2008 which placed research at the core of our IBD service. We attracted medical, nursing and administrative staff who shared the same vision and engaged with our local patient panel who also embraced the concept.
The resources for research were hard to come by. In the initial period we therefore worked beyond our remit in our contractual job plans to build up the research profile for the unit nationally and internationally by delivering multicentre studies to time and target. We brought in a wide portfolio of both interventional and non-interventional studies to ensure there were at least one or two studies available at a given time to each IBD patient when in contact with our service.
We developed patient-facing studies in which the patient was indeed a researcher. The entire team were trained in research principles, regulations and were delegated to be active participants at all stages of the studies. Research was not considered as an optional extra but a vehicle to deliver better care, ask questions and develop staff. We 'punched well above our weight' in delivering high-profile studies and put 'IBD Hull on the map'. This attracted commercial and grant funding which allowed us to invest into the team to build a financially sustainable model not impacted by pressures of the apparent conflict in delivering the 'day job'. In addition, support from NIHR allowed some vital time to fund additional clinical research time for clinicians and nurses.
What we have gained
A self-sustainable unit which not only collaborates with national and international colleagues, but also develops and runs multicentre studies to answer clinical questions and challenges.
We have shown that you do not need to be an 'academic centre' to initiate and deliver vital research. The rigor followed in research protocols is followed in our clinical care pathways to ensure quality and safe delivery of care and enabling research questions and hypotheses to be raised in each step of clinical care.
Each team member has been recognised in scientific outputs from our research work, thus continuing to fire their enthusiasm in research. Some have gone on to develop their own ideas for a research career. From the patient perspective, seeing the 'same faces' with a seamless journey from a research protocol to clinical care and vice versa meant they believed in our approach and ensured continued participation.
Currently 73% of our cohort of over 4,200 patients have participated in one or more research studies in the past 2 years. Most importantly, the measurable clinical outcomes for our IBD patients have shown that integration has delivered our objective to achieve the best possible outcomes and this gives us the excitement and motivation to continue with our model. We stand proudly as an internationally recognised IBD service which has delivered a winning formula by fusing clinical care and research – two priorities that can sometimes seem in opposition to each other in the NHS.