DigiBete is a unique video web platform and social enterprise, created by a patient-led initiative and the Leeds Children and Young People’s Diabetes Team. The content is designed to help children, young people and their families self-manage diabetes by extending the reach of clinical teams online. Videos on the website support them on their diabetes journey, providing essential information at diagnosis, age-appropriate educational videos and generic emergency advice for common acute complications. Written resources produced by the Leeds team are held on the site, to help reduce requests for additional paper copies. It also has downloads of national and international guidelines, UK audit reports, structured education documents and academic resources, available to professionals and parents alike. Launched in August 2016, the web platform is constantly evolving, with new content added regularly.
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DigiBete is freely available to all, 24/7, without registration. It creates its own content, rather than signposting to multiple relevant resources. Its content is clinically approved by a multi-professional team of experienced clinicians. It can be used by patients, families, extended families, carers, school staff and healthcare professionals (HCPs). DigiBete is active on social media and part of the online diabetes community. The website aims to: address the lack of awareness of what type 1 diabetes (T1D) is and how it impacts children in the UK; provide visual resources to support the large amounts of verbal and written information required at diagnosis by diabetes teams; supply information and support to the carers for children and young people (CYP), as they do not always have direct access to the HCP team; to improve the confidence of educators caring for CYP with T1D in nursery, school and college; to meet the need for a UK-based, T1D-focused resource, specifically for CYP; to provide continued, structured education for CYP reluctant to attend group refresher sessions; to give patients access to clinically-approved information from specialist diabetes staff outside office hours; to bring CYP diabetes NHS care online to relieve overstretched, traditional resources, and to contribute to improved outcomes for CYP with T1D.
DigiBete is registered as a Community Interest Company (CIC); initially the family self-funded the beta project, with subsequent funding from charitable grants, CCG funding, community fundraising, med tech and pharma grants. The finance director is working to secure continued funding. The beta platform was created in-house and populated with instructional videos, featuring staff from the Leeds Children’s Diabetes Team. The website design was facilitated by mHabitat. Workshops were held over a six-month period with families attending the Leeds CYP Diabetes service, invited by the clinical team. About 30 families took part, with patients of a range of ages. A company called HMA improved the site’s usability. A grant from Novo Nordisk was used to digitise its written structured education programme, ‘The Goals of Diabetes Education’. More than 70 age-specific educational videos have been made to complement individual advice given at clinic appointments. The relaunched site has improved content, celebrating positivity and achievements with real patient stories, as well as educational themes. Parents wanted families with a new diagnosis of T1D to experience a practical and positive environment.
Digibete’s goals are: to become a recognised brand in the provision of quality, clinically-approved advice and education to anyone affected by T1D, at the time of need; to reduce the ‘postcode lottery’ of accessing quality information locally; to improve self-management outcomes for CYP with T1D; to support anyone newly diagnosed with T1D to improve confidence in self-management; to ease the growing burden and expectations on HCPs without additional funding; to make time efficiency savings for HCPs in diabetes teams, as well as to bring improved emotional health and less isolation to CYP with T1D. Measurable data will take time to collect (reduced contacts, reduced hospital admissions, improved clinical outcomes); Leeds will be the pilot site. The website has had over 42,000 page views and 15,000 visits to the site, with visitors staying for an average of 5.30 minutes. On Facebook there have been 113.8K video views and 44,000 minutes of educational videos watched. There have been 2,491 tweets to date, with 3,197 likes and 641,200 impressions. A parent public survey conducted on social media (23 users) indicated that 87% of people found the platform helpful/very helpful with 91% feeling the content was high quality/very high quality; 78% said they used the resource to train other members of their family, schools or community about T1D, while 91% said it could help reduce the need to contact the diabetes team for non-emergencies.
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This is an ongoing project with potential to further reduce NHS burden and improve communication. The site has received endorsement from the National CYP Diabetes Network, Diabetes UK and JDRF, and is seen as complementary to their work. New charitable grants will fund schools’ content and an under-5s area. Discussion with a significant partner is underway to secure funding for the website without overt sponsorship, which might affect the credibility of the site. The site has a significant social media profile and good relationships with related projects and parents’ groups. It has filmed eminent speakers at national conferences for the site. An international audience is growing via the EU-SWEET Project; the BrowseAloud translation facility makes written resources accessible to a non-English speaking audience. The Leeds Children’s Diabetes Team is committed to the project for the benefit of its own patients and the wider community. It is promoted as a teaching resource locally to new staff learning about diabetes. There are plans to expand the content for young people up to age 25 as they transition into adult services.
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