Home monitoring for patients with inflammatory bowel disease

My IBD Care is a patient-facing mobile phone application and a clinician platform for patients with inflammatory bowel disease (IBD).

Working with iOS and Android it allows IBD patients to communicate with their clinical team, see their medical history and medication details, track and record symptoms, arrange appointments and keep a care record on their phone.

Patients can also use the app to monitor their well-being including their sleep, diet, stress level and exercise and, includes regular patient reported outcomes (PROMs) data and patient reported experience measures (PREMs questionnaires) to help the clinical team support their care in a timelier way than is possible in the traditional model of infrequent, primarily face-to-face interaction.

It enables patients to engage with their hospital and the staff who are treating them – and this routine digital contact supports a safe reduction in routine face-to-face appointments. It promotes self-management.

The app offers appointment and medication reminders, a patient-controlled health record and an internal mapping tool that helps patients get to their appointments more easily. Because the app collects information on symptoms and on behaviour, for example diet, clinicians can look at the connections between these. It will can also track the patient’s mood, pain and fatigue.

Patient Chris McGovern said: “Tracking daily how you are feeling, how you are eating, your stress levels, gives me a certain amount of confidence that someone at the hospital is monitoring how I’m doing without me having to go into the hospital every two months. I feel there’s an invisible person being a safety net for me should my condition deteriorate, there’s someone watching and they’ll catch it before it deteriorates too badly.”

Dr Gareth Parkes, consultant in Gastroenterology, Barts Health NHS Trust, said: “There are two main elements to self-management: education, understanding why you take the medication, what the disease is; and the softer side, thinking about stress levels, thinking about exercise, diet, how much sleep you get.”

Patients can report deterioration in their condition and they can send a message via the app, which is duplicated by email if requested by the hospital staff. The clinician’s portal allows clinicians to stay connected to the patient and check on how they are doing. It is monitored regularly and clinicians can send messages to patients or call them in for outpatient appointments if necessary.

As well as responding directly to patient information with, for example, advice on care or calling the patient in for an appointment, clinicians can ‘nudge’ patients to a range of content that can help them better understand their condition or support them with self-care.

How was it developed?

The app was developed by Ampersand, a social enterprise company, in conjunction with clinicians from Kings College Hospital NHS FT and Barts Health NHS Trust and a number of patient groups including Crohn’s & Colitis UK and Versus Arthritis. Research with clinicians helped to define the content and what could be achieved remotely; conversations with patients aimed to understand what living with the condition meant to them and how they look after themselves. The app was subject to trials and a surveillance study before being scaled up and rolled out to all the trust’s IBD patients who wished to use it. Developers also worked closely with Crohns & Colitis UK.

Trials aimed to understand what kind of digital interactions would be appropriate for a model of care that reduced outpatient appointments.

Who is using it?

My IBD Care is currently being used by Kings College Hospital NHS FT and Barts Health NHS Trust. A version of the app for people with rheumatoid arthritis is also in use by Kings. In addition to around 800 patients at these two trusts, the company says over 5,000 other patients – whose trusts have not signed up – are using the app.

Outcomes

Use of the app is said to have led to a reduction in outpatient appointments and an increase in out-of-hospital care for people with IBD. A surveillance study of IBD patients by Kings found that 65 per cent of those asked would be happy to use the app exclusively; 20 per cent were happy to use the app and have reduced face-to-face contact; 15 per cent wanted to continue to use traditional methods (face-to-face and phone calls).

Dr Bu’Hussain, clinical lead for gastroenterology, Kings College Hospital, said: “We need to find more effective ways of providing effective care for people with long-term conditions and that means removing care from traditional settings. We found that… people would like to have non- face-to-face interactions. People don’t like coming into hospital.”