Shellie Radford: Senior Research Fellow, Faculty of Medicine & Health Sciences, University of Nottingham School of Medicine, UK
Citation: EMJ Gastroenterol. 2026; https://doi.org/10.33590/emjgastroenterol/U7YA0NR3
You will be speaking at United European Gastroenterology (UEG) Week about the use of routinely collected data in healthcare research. Why is this an increasingly important area of research, and what makes routinely collected healthcare data particularly valuable?
Routinely collected healthcare data offer an important opportunity to understand how diseases are managed and experienced in real-world clinical settings. Unlike many traditional research datasets, they can capture large and diverse populations over extended periods of time, providing insights into patterns of disease, treatment, healthcare utilisation, and outcomes that may not be possible to capture within individual clinical research studies.
For me, one of the greatest strengths of routinely collected data is its potential to gather real-world data about living with a particular health condition, which we can use to complement evidence generated through clinical trials. Trials are essential for establishing efficacy and safety under controlled conditions, but routinely collected data can help us understand what happens when treatments are used across broader patient populations in everyday practice.
In inflammatory bowel disease (IBD), this is particularly valuable because Crohn’s disease and ulcerative colitis are highly variable conditions, and patients’ experiences and healthcare needs can change over time. Routinely collected data can allow us to explore these longer-term and broader patterns at a larger scale.
However, the value of these data lies not simply in their volume. We need to understand how the data were generated, what is captured, and what may be missing. My talk this year focuses on how the nurses and wider multidisciplinary team can contribute to making sure that the data we collect and store is of a high quality and as complete as possible, and how these data can be used in clinical research to improve the outcomes and experiences for patients.
Routinely collected data can provide valuable opportunities for healthcare research. What are some of the key considerations when collecting and using this type of data?
A key consideration is recognising that routinely collected healthcare data are everywhere, often generated for clinical, administrative, or operational purposes rather than specifically for research. Data quality and source are particularly important. A large dataset can create an impression of precision, but the size of a dataset does not necessarily overcome problems with measurement, missingness, misclassification, or changes in clinical practice over time.
Researchers therefore need to understand how information has been recorded and coded, how consistently variables have been captured, and what factors might influence whether data are missing or incomplete. This also means that it is important that the HCPs working in everyday practice where these data are captured are aware of how important it is to gather accurate and complete records, but also the potential these everyday actions have in contributing to massive pieces of research, which have the potential to improve care internationally.
There are also important considerations around data linkage. Bringing together different sources can provide a much more comprehensive picture of patients and their healthcare, so it’s important that we know all of the places where these data are and how we can best bring these together. This needs to be undertaken using robust methods and appropriate governance.
Finally, there are important ethical, legal, and information-governance considerations when working with patient data. We need to ensure that data are used responsibly and proportionately, with appropriate safeguards for confidentiality and privacy.
Your second invited talk at UEG Week will focus on your work around measuring clinical disease burden in Crohn’s disease. What initially prompted your interest in how we measure and understand disease burden in people living with Crohn’s disease?
My interest developed from thinking about the gap between how we measure Crohn’s disease clinically and how people actually experience living with the condition. Much like I have described above, sometimes the research work we do, or even the way we think about a health condition doesn’t always factor in the lived experience of the disease.
We have become increasingly sophisticated in measuring individual components of disease, including inflammation, symptoms, and quality of life. However, Crohn’s disease is multidimensional, and its impact can extend well beyond the outcomes we traditionally use to assess disease activity and the effects of the treatments we give to treat it.
Disease burden may encompass symptoms and complications, functional limitations on daily life, psychological and social effects, treatment burden, and healthcare utilisation, which includes costs for the patient and the healthcare system. These different components can accumulate over the course of a person’s illness, and patients with apparently similar clinical disease may experience very different levels of overall burden.
What struck me was that we have a large number of individual measures available, but there is less clarity about how these different dimensions can be brought together to provide a broader picture of disease burden, and therefore the whole picture of the person living with Crohn’s Disease.
That led me to become interested in whether we could develop a more comprehensive, data-driven approach to quantifying disease burden in Crohn’s disease. The challenge is to develop something that is methodologically robust, meaning that it measures what we want it to, and meaningful to patients in a way that they feel like it represents their true experiences and is useful in clinical practice and research.
Why do you think developing a broader understanding of disease burden could be important for the way we think about treatment and care for people living with Crohn’s disease?
I think it could help us better understand whether we are achieving what really matters for the individual patient.
Controlling inflammation and preventing disease progression remain fundamental goals of Crohn’s disease treatment. However, patients can continue to experience substantial difficulties even when some measures of disease activity suggest that their disease is well controlled. Conversely, two patients with similar disease characteristics may have very different experiences, levels of burden, and healthcare needs.
A broader understanding of disease burden could therefore complement existing measures of disease activity and treatment response. Rather than replacing established clinical, endoscopic, or biological measures, it could provide an additional perspective on the overall impact of disease.
This could ultimately support more individualised care by helping clinicians identify which aspects of disease are contributing most to a patient’s burden and where further intervention may be needed.
It may also be valuable for research. If we can measure disease burden more comprehensively, we may be better able to evaluate whether new treatments and models of care are producing meaningful improvements across the different dimensions of patients’ lives.
For me, the important shift is towards thinking not only about whether we have controlled the disease, but also about whether we have meaningfully reduced the burden of living with it.
Your work also explores how we can optimise treatment in IBD. Your recent systematic review and meta-analysis examined the safety and efficacy of advanced combination therapies. As treatment options continue to grow, what does the emerging evidence mean for clinical practice?
The increasing number of therapeutic options available for IBD is an important advance, but it also creates greater complexity for clinicians and patients making treatment decisions.
Our systematic review and meta-analysis examined the emerging evidence around advanced combination therapies, considering both efficacy and safety. As this evidence base develops, I think the key issue for clinical practice is how we translate evidence about treatment strategies into decisions that are appropriate for individual patients.
This is particularly important in IBD, because patients differ considerably in disease phenotype, previous treatment exposure, risk of progression, comorbidities, and treatment goals. The most effective approach at a population level may not necessarily be the best approach for every individual.
As treatment options expand, we therefore need robust comparative evidence to understand not only whether a treatment works, but for whom, in what circumstances, and at what potential cost or risk.
I also think this reinforces the importance of measuring outcomes more broadly. Treatment optimisation should not be defined solely by one measure of disease activity. We need to understand whether treatment is reducing the overall burden of disease and improving outcomes that are meaningful to patients.
The challenge now is to turn an expanding therapeutic landscape into genuinely personalised, evidence-informed care.
Finally, what are you most looking forward to at UEG Week this year, and are there any particular developments, sessions, or discussions that you will be watching closely?
This is my first time attending UEG Week in person, so networking and meeting people is high on my agenda. I am also looking forward to discussing my work and hearing perspectives from researchers working in different healthcare systems and research environments. One of the most valuable aspects of an international meeting such as UEG Week is the opportunity to challenge our assumptions, share different approaches, and identify questions that we may not have considered.
More broadly, I think this is a particularly exciting time for IBD research. We have an expanding range of therapeutic options, increasingly sophisticated sources of data, and a growing emphasis on personalised care. The challenge is to make sure that advances in all three areas translate into outcomes that genuinely matter to people living with IBD. I am looking forward to being part of those discussions at UEG Week.
