There are over 600 patients living with IBD across the NHS Highland area, some at considerable distance from secondary care. In addition, GPs may only have one or two patients with this condition and so could find it difficult to maintain current knowledge of treatment for IBD. This project has been designed to help patients manage their own disease, whilst given them access to the best specialist advice through the use of smartphones to enable patients to record their symptoms. This information is monitored by a specialist IBD nurse who will call the patient for a consultation should any symptoms deviate from a normal level. This IBD nurse will then help direct the patients care appropriately.
Working with commercial partners OpenBrolly, software has been designed that displays the transferred data from the patient’s smartphone so that it can be interpreted by the research team at Raigmore Hospital. Each patient will have a range of symptoms that can be displayed graphically, and if any of the symptoms deviate from a normal level, this will alert both the patient (via the smartphone) and the patient's specialist IBD nurse. Once alerted, the IBD nurse will either call the smartphone or a designated landline to hold a consultation. The IBD nurse will use a clinical management template and his/her judgement to help direct the patient’s care appropriately.
Many patients with IBD struggle to take the medication that has been prescribed for their disease management. The phone ‘app’ can be used to record which medications have been prescribed and how often the patient takes them. This ‘compliance’ rate is very valuable in helping direct patient care.
If successful, it is hoped that the introduction of this system of disease management will help personalise the care that can be delivered to each patient. The use of smartphone technology may help improve the care of other groups of patients with chronic medical conditions. Patients with asthma, diabetes, chronic pulmonary disease and depression may benefit from the use of mobile phone technology.
In addition, a key outcome of this project is the transfer of data across the NHS Highland firewall, from a patient’s smartphone into a patient record. This is novel in Highland and demonstrating the security of the patient data will open up opportunities for the delivery of other health services in this way.
40 patients with IBD have now been recruited from across the Highlands and Islands region of Scotland: some from urban areas; others residing in remote locations. Technical testing is now also complete (the 'app' is compatible with all phone platforms, although not every android has been tested). As well as testing the technology, researchers will also measure if the use of the smartphone improves IBD patients’ health and wellbeing. A variety of measures to record what impact the technology has on their disease, quality of life and the number of contacts with their GP and hospital doctor will be used. Frequency of use will also be measured.
ITTS exported the service to Ireland in September 2013.
It is estimated that 15,000 Irish people suffer from IBD, often diagnosed between the ages of 15 and 30 years. The ideal app would provide a method of recording symptoms, supply information/feedback and be reportable to the health care provider.
Research by St Vincent’s University Hospital in Dublin in the form of a questionnaire answered by 180 IBD patients was carried out in June 2011. This showed that 55% of IBD patients look for information about their IBD online; 76% would like an Irish IBD website and 80% would be prepared to use a symptom tracker. This research was entitled ‘Current and future education for IBD patients’. A user-friendly app for self-monitoring could help the patient keep track of the symptoms and seek help before a serious flare results in hospitalisation. Besides increasing knowledge and empowering patients to feel more in control of their illness, it has the potential to have real benefits in terms of preventing hospitalisations and other serious consequences of IBD.
Since September 2013, following successful implementation in Scotland, ITTS Ireland are now trialling a service with Galway University Hospital, clinical research facility and IBD patients in the associated referral area. The trial will recruit 20 patients to use the app for six months, after which there will be a three month evaluation.
On Saturday 19 October 2013, The Irish Society for Colitis and Crohn's disease held an Open Day at the University of Ireland, Galway.
|Monica Casey and Aine Keogh at the ITTS stand||Prof Larry Egan takes to the stand|