Summary
A communication survey was carried out with children, young people and their families attending the diabetes clinic. Families were unanimously in favour of using an app. Previously, communication between the diabetes team and families was via email or post. This was often inconsistent and an ineffective and inefficient way of getting maximum coverage with any particular communication or message. Not all patients read emails frequently and mailings by post were slow and costly. The app idea came from local schools’ effective use of apps. The majority of local families attending the diabetes service use it. It stores useful information for them, provides links to recommended internet resources, a contact in emergencies and a platform for the local family group to publicise events and information. Feedback from users has been positive, driving further development.
Innovation
The app offers a new approach to communicating information. Families and children affected by diabetes traditionally attend hospital clinics four times a year for review and assessment. Clinical teams attempt to provide information and support to these families when they attend, and at other times by phone calls, home visits and extra appointments, depending on need and available resource. There is a vast amount of information available to children with diabetes to empower them and their families to self-manage, but teams do not generally have the resources to provide many face-to-face meetings to impart all this information, so they produce it in other ways, such as via a written local handbook, patient information leaflets and videos. Changes or updates are neglected or take so long that the information is already out of date when it is published. The app is a new way of sending low-cost and timely information from the clinic to the patient. There is great benefit in families with diabetes linking together and supporting each other, via web forums and support groups. However, it is difficult, costly and time-consuming for clinical teams to instigate and support this through traditional means (while maintaining confidentiality). Widespread use of the app in the local diabetes community bridges this gap and group messages can be sent from the local family support group without breach of confidentiality or concern about data protection. Since the app was launched there has been a dramatic increase in attendance at support group events. Locally written diabetes patient information is heavy on printing costs and paper, but the app provides all this information at a family’s fingertips.
Results
Users of the app include children, parents and grandparents. There were 431 downloads between the launch and March 2018 (220 families were attending the service at this point) and 121,048 app sections have been viewed. Although some families may not use this technology, the data suggests high user engagement and the team generally knows which families require paper copies.
The benefits of the app include: plenty of information; limitless space for expansion and storage; information at fingertips; easy access to emergency contacts and direct links to relevant and approved websites. It offers easy access for friends and family, being free to download for anyone. Feedback has been universally positive. Numbers of paper-based mailings and handouts have reduced significantly, and the family support group reports greatly increased membership.
Dissemination and Sustainability
A contract has been agreed with Piota for three years, financed through endowment funds. Current funds and support from the family support group suggest funding will continue indefinitely after this.
Resources are easily uploaded regularly and links to established resources from third-sector partners are easy to maintain. The in-app survey and user feedback will continue to develop the app further.
The concept of the Ayrshire Children’s Diabetes App was presented to the Scottish Paediatric Diabetes Network Group’s conference in September 2017. Following this, one other health board has launched an app (Grampian) based on the same template with the same developer, and others are looking to develop apps (NHS Fife and NHS Lothian). The community paediatric service has launched an app based on the diabetes app for service users, showing that the app template and user interface is applicable to other aspects of health.
Method
The app was designed with the developer Piota, based on one of its school apps. The template was populated with diabetes service information, such as emergency advice, contact details and general diabetes information. A three-month trial began in June 2017, during which the app was refined. Four members of the team were trained how to administer the app. It is available free on Apple and Android platforms. It has an intuitive home screen and is easy to navigate. It publicises local networking or fundraising events and sends messages with diabetes tips and advice. Users select which types of notification they receive. A survey section sends anonymous feedback from users. Users cannot post messages themselves so, other than feedback from the surveys, which is only seen by the administrators, this is a one-way communication. It is therefore free from the risk of negative comments or ‘trolling’ and avoids the need for an administrator to mediate or filter messages. The ability to continuously develop the app means that it is easy to keep up to date and ensures long-term sustainability. Statistics show how many people have downloaded the app and how many sections have been viewed daily. The app is promoted through a leaflet handed out at clinic, and through the family support group’s Facebook page. All new families and children coming into the service are encouraged to download it as part of their initial education.
