Endocrine Abstracts (2019) 68 P5 | DOI: 10.1530/endoabs.68.P5

Development of a mobile app for patients with neuroendocrine neoplasms: a collaborative project between United Kingdom NET Society and Neuroendocrine Tumour Patient Foundation

Catherine Bouvier1, John Ramage2, John Newell-Price3, Jeevan Virk4, Ronny Allan1, Peter Verey1, Nader Alaghband5 & Raj Srirajaskanthan2


1Neuroendocrine Patient Foundation, Lemington Spa, UK; 2Kings College Hospital, London, UK; 3University of Sheffield, Sheffield, UK; 4Novartis, Hampshire, UK; 5Ampersand Health, London, UK


Background: Symptom management is a cornerstone of clinical care, particularly for patients with cancer. However, often patient’s symptoms go undetected by health care providers between clinic visits. Mobile health applications are increasingly used in oncological care to support cancer patients.

Aims: To develop a patient focussed mobile application to enable patients to track symptoms, record quality of life, communicate with their clinical teams and provide links to reliable healthcare information.

Methods: A collaborative partnership was established between UKINETs and NPF to develop a patient support tool/ mobile app. An unrestricted grant was awarded to set up and fund the project for 2 years. A working group was set up which included representation from patients, UKINETS and NPF.

Results: Patient focus groups organised by the NPF enabled development of the areas of interest to patients, these were run through NET Natter meetings and focussed app meetings. This covered areas of need such as online support links, recording of symptoms. Importantly we covered data sharing, concerns over privacy, likelihood of using such a tool. An advisory board was set up to discuss the fields which would be useful to help capture patient symptoms and quality of life indices. Following a competitive tendering process, Ampersand Health (a digital technology company) was chosen to develop a mobile app. The mobile app has been designed, and beta tested with patients, carers and clinicians. Post beta testing a questionnaire was sent out to users to identify methods to improve the usability and interface of the app. Currently, final changes are being made to the app prior to its launch.

Conclusion: This app will be available for all patients to use and trusts will be able to sign up to use the app to enable them to communicate with patients, view quality of life data and symptom trackers. The app will also link to educational and self-help tools, including psychological support and well-being. The mobile app will be launched towards the end of the year.