Objective
The objective of the project is ultimately to provide better self-management support for children and young people and families in India who are dealing with Type 1 Diabetes. Additionally, supporting the clinical teams to help their patients manage their condition, is a key aim.
The project will design, develop and deliver a digital web platform and a clinic and patient support app, within 12 months, working with a local project team. Once delivered, these resources will be implemented in up to 16 test centres, supporting up to 3,000 patients, over the second year, with ongoing evaluation of the service. Once this evaluation has been deemed satisfactory, the opportunity for a progressive rollout will be considered.
The digital resources will include easily accessible infographic and video content initially in English and Bengali, but would be easily translated into 6/7 other main local languages. Around 60 diabetes essential topics will be covered and resources will co-designed and filmed locally.
As well as a free to access website, the clinic & patient support app would provide important functionality, as required, including:
* Age-appropriate content (automatically tailored by age)
* Clinic to patient remote communications (appointment reminders, good health guides etc)
* Patient 'My T1DArea' (a place to store own diabetes information)
* Personalised Clinic Portal (Clinic documents, contact details, team members)
* Data Dashboard (reporting on uptake and usage - Clinic, Region, National)
* Psychology Support (Coping with Diabetes)
* Schools (Training & Awareness)
Once the resources have been delivered and implemented in the pilot centres, DigiBete will continue to support these over years 2 & 3, to help maximise the impact of the project.
Once evaluated, DigiBete will be available to support any further wider rollout at scale, subject to agreement. At a maximum scale-up, this could involve around 814 clinics across all States. Additionally, as the resources will be available in Bengali, the would be suited for use in Bangladesh with little change.
Background Rationale
India accounts for most of the children with T1DM in South-East Asia, with an estimated 130,000 children and young people living with this condition and the rate of diagnosis increasing annually. Traditionally, diabetes support has been more adult-focussed and support, including self-management support, for young patients and families has been sadly lacking.
Limited face to face support, particularly during the COVID 19 emergency, accentuated the need for more digital resources and in the UK, DigiBete has developed an innovative digital self-management support model which was commissioned by NHS England and has now been successfully introduced at scale across the UK & Ireland and has attracted wider international recognition. DigiBete has now been introduced into more than 250 diabetes clinics in the UK and the clinic and patient support app is used by over 30,000 patients and 1,800 healthcare professionals.
Having been aware of DigiBete's success in the UK, DigiBete was approached by a clinician in West Bengal, Dr Sujoy Gosh, who is involved in setting up physical diabetes centres and saw DigiBete as an ideal initiative to assist in the scaling up of support to the CYP diabetes community. Dr Archana Sarda was also engaged and an initial pilot project based in 2 regions, West Bengal and Maharastra, was then discussed and the support of Breakthrough T1D sought.
There is a realisation that existing models of support are failing to address the high numbers of patients diagnosed with Type 1 diabetes and the increasing rate of new diagnoses. The development and introduction of innovative digital resources to support self-management is seen as complementing and reducing the pressures on scarce physical resources and allowing for remote care to be introduced quickly and at scale. Resources based on the DigiBete model will offer wrap-around care, outside of the clinic, 24/7, whenever required.
As a sustainable, agile and flexible digital resource, this model will continue to meet the evolving needs of CYPFs and Diabetes Clinics, supporting the delivery of more personalised care to optimise patient outcomes and reduce health inequalities and this has gained the trust of the diabetes community.
Description of Project
Multi-award winning DigiBete is a digital diabetes self-management platform, which has improved clinical experiences for Children, Young people and Families (CYPFs) and the clinical teams that support them, by extending essential diabetes self-management through a Digital Platform and App, freely available to the community, 24/7 whenever required. Co-designed with CYPFs and healthcare professionals (HCPs), all resources are clinically approved and nationally commissioned by the NHS in the UK.
The DigiBete App supports CYPFs to become more confident in their own care with resources providing accessible and comprehensive awareness, structured and informal education, training and self-management support. In the UK, DigiBete plays an essential role in operationalising NHS priorities in partnership with the clinical diabetes networks and has been evaluated through an independent multi-centre Real World Evaluation and a full Health Economic Evaluation has also been carried out.
DigiBete’s Clinic & Patient Support App has been implemented quickly and at scale across 90% of paediatric and young adult clinics in the UK and we have been approached to provide similar services in India by developing a culturally sensitive version of resources based on the DigiBete model, initially as a pilot project, with a view to a potential wider rollout.
The pilot project is initially over 3 years with the objective of developing these resources and implementing them into 15 clinics in West Bengal and 1 clinic in Maharastra, with a total patient cohort of up to 3,000 being involved. Subject to successful evaluation, a wider national implementation will be considered.
DigiBete’s role initially would be to work with the local clinicians and community, to undertake the technical development of the website & app, based on the DigiBete model, to coordinate the content production and to essentially deliver a culturally appropriate version of DigiBete, ready to use. A list of the required content has already been agreed in principle. Resources will be developed in English and Bengali initially but will be capable of being easily translated into 6/7 other local languages as a separate project.
We would then work with the project group through the following two years to train the teams and embed the resources into the test clinics, providing all necessary support to them to ensure a successful introduction. We can also assist with the evaluation methodology.
The support of Breakthrough T1D, in providing funding for this project has been vital, along with Dr Partha Kar's support in facilitating the project.
Anticipated Outcome
This is seen as a 3 year project with the following phases:
Year 1 - Development, delivery & initial implementation
Outcome - Delivery of Digital Web Platform and Clinic & Patient Support App and implementation into 5 initial pilot diabetes centres in West Bengal and 1 in Maharastra
Year 2 - Further implementation and evaluation
Outcome - Implementation into 10 additional diabetes centres in West Bengal, ongoing evaluation and reporting.
Year 3 - Consolidation of onboarding to all diabetes centres, formal evaluation and reporting on usage and impact.
Outcome - 16 diabetes centres successfully onboarded and using DigiBete. Estimated 40 HCPs registered and using DigiBete clinic portals and maximum 3,000 patients and families registered and using the app.
The evaluation would be ongoing and involve both patients & families and clinic teams and feedback would be available through the app at 60, 90 and 120 days and thereafter if required.
Ultimately, the anticipated outcomes would be a successful pilot project, one which benefits both clinicians and the community, and a positive decision to scale up implementation regionally and nationally.
Relevance to T1D
Effective management of Type 1 is paramount to preventing unnecessary hospital admissions, avoiding DKA episodes and maintaining good health and wellbeing. 99% of care in diabetes is delivered outside of the clinic environment, in the home or wider community. Reliance on traditional physical care provision is outdated and unsustainable and needs to be supplemented by innovative digital solutions.
DigiBete is providing an essential digital self-management web platform and App with resources, co-designed with CYPF and with HCPs who look after their care in clinic, at home and in the wider community. As a community-led organisation, DigiBete exists to support the growing needs of the Type 1 (and Type 2) Diabetes community, from newly diagnosed through to transitioning to adult services. DigiBete offers accessible, age-appropriate resources which support diversity and inclusion.
Maximising the benefits of digital self-management is essential in the current and future economic scenarios and the DigiBete model is well placed to positively support the increasing number of patients and the increasing strain on budgets and scarce health service resources. DigiBete is aligned with national priorities and long-term plans, including digitalisation of services and supporting the reduction of health inequalities for children.
DigiBete is a resilient, comprehensive, efficient and effective digital platform and App and has proven to provide uninterrupted support, outside of the clinic, 24/7, 365 days per year, when required. All training and onboarding materials are also available digitally through the App and easily accesses by clinics, if required. As well as individual clinic training, regional and national sessions, including shared-learning events, can be delivered to promote the resources and best practice and uptake.