Award Title: Using software to improve the long-term management of people affected by coeliac disease
Funder: Coeliac UK

Abstract: Cievert is a digital health SME specialising in designing innovative software for the health sector. Established in 2011 by a former NHS radiographer, Cievert software can now be found in NHS Trusts across England, Scotland and Northern Ireland. This industrial research will be conducted in conjunction with the Academic unit of Gastroenterology, Sheffield Teaching Hospitals NHS Foundation Trust, which is the largest centre for gluten-related diseases in the UK.
Coeliac disease affects one in 100 people, however only 24% of these people have been diagnosed*. The mainstay of treatment is strict adherence to a Gluten Free Diet (GFD), allowing restoration of the structure and function of the small intestine. Despite national and international guidelines advocating follow-up of coeliac disease, there remains significant differences in how individuals are supported and followed up. For example, some patients have regular follow-up consultations with their GPs, others see Gastroenterologists or Dietitians, and others have no follow-up at all.
Ideally, long-term care should be tailored to the individual need of the patient. Some patients will adapt well to the dietary modification and require minimal ongoing support or care, whilst others may require significantly greater intervention.
This project has two broad aims. Firstly, to improve how coeliac patients are followed up by using Cievert’s software, called Penguin, to remotely monitor how patients are living with their coeliac disease and automatically use this information to tailor clinical need to the individual. Secondly, using this improved data collection to help better identify those responding to a GFD, without the need for invasive biopsies of the gut.
To achieve these aims, we will trial the software with patients that have coeliac disease and assess:
• Which patients use the software and why/why not
• The frequency of use and compliance over time
• The effect on referral rates within primary and secondary care
• How Penguin affects outcomes for patients by comparing adherence to a GFD and biochemical/serological markers
Functionally, Penguin allows for clinical teams to pose pre-determined questions to patients at set intervals about their clinical condition. Once the patient answers these questions, the software then automatically assesses the answers looking for any response out of tolerance. Any answer out of tolerance is then flagged to the most appropriate clinical team for follow-up.
This means that patients requiring support are identified more quickly and those that are doing fine receive reassurance without unnecessarily consuming finite clinical resource.

Lay Abstract: Currently, the only treatment for coeliac disease is strict adherence to a Gluten Free Diet (GFD). Clinical best practice states that every patient living with coeliac disease should be clinically reviewed at least once a year, to assess how they are and how they are managing with their GFD. There is, though, huge variation in how, when and by whom patients are followed up. Some patients are reviewed annually by a consultant gastroenterologist, others by a dietician or clinical nurse specialist. Others still are followed up by their GP and some are discharged with no follow-up at all.
For some patients, adapting to a GFD is relatively simple and annual follows-up serves little purpose; for others, adapting to a GFD can be difficult and they require much greater support.
The goal of this project is to better identify those patients with coeliac disease that require additional clinical support, compared to those that are living well.
This project will utilise software to pose personalised online questionnaires to patients to assess how they are living and coping with their GFD. Patients will be able to record blood results and urine results in the software as well.
Importantly, the software will then automatically assess the patient’s answers, against clinical best practice, to identify those patients that require additional support and the type of support they require compared to those that are living well.
The result will be that patients who are living well continue to have the assurance of being clinically followed up without the inconvenience of hospital appointments, whilst patients requiring additional care are identified quickly and easily, whenever the need may arise.
If successful, this software will be extremely cost effective at following up large numbers of patients. By doing so, the software will also collect outcome data on large numbers of patients living with coeliac disease. This could also lead to further research and insight into how best to manage the disease and support patients.
The software will not replace any clinical activity, instead it will support existing clinical pathways and decision-making only.

Research Activity Codes: 7.1 INDIVIDUAL CARE NEEDS
Health Categories: ORAL AND GASTROINTESTINAL;INFLAMMATORY AND IMMUNE SYSTEM