There are approximately 4.8 million people living with diabetes in the UK and this is expected to rise to 5.3 million by 2025. It is a condition that is predominately self-managed and people with diabetes need education and support from health and care professionals across multiple care settings. People are increasingly using medical devices to help manage their diabetes. These include devices for monitoring glucose and delivering insulin.

It is important that health and care professionals can access information about a person with diabetes and the data from the medical devices they are using to enable them to provide the best advice and support but this information is often not available or easy to view in one place.

Information about a person’s diabetes is not all being digitally shared between the different professionals involved in their care. For example, information recorded by community nurses or podiatrists is not always available to GPs or hospital doctors and information such as latest HbA1c test results are not always shared across systems. This means that a person may be asked back for repeat tests.

Digital and technological innovations are delivering tools and devices to help people better self-manage their diabetes and the number of people offered them is growing, but it can be hard for people to understand and interpret the data and they may need help with this. Professionals are unable to bring together data from different devices to have a complete view.

There is inconsistency in use of codes to record information related to a diabetes diagnosis, there are a number of similar SNOMED CT codes and it is not clear which codes should be used particularly when there is an indeterminate diagnosis.

The Diabetes Record Information Standard defines the information needed to support a person’s diabetes management. It includes information that could be recorded by health and care professionals or the person themselves that is relevant to the diabetes care of the person and should be shared between different care providers.

Development of the standard included defining a ‘view’ of the key information to support the care of a person self-managing their diabetes. The Diabetes Self-Management Information Standard Model defines information that could be recorded by the person (or their carer) at home (either using digital apps or medical devices) and shared with health and care professionals.

These standard is based on what professionals and people with diabetes have told us that they want recorded and shared.

• The standard was developed with UK wide consultation and engagement to meet the needs of all four UK nations.
• The standard is intended for all types of diabetes mellitus (except ‘prediabetes’).
• The standard was designed to support the 9 care processes for diabetes (glycated haemoglobin (HbA1c), blood pressure, cholesterol, urinary albumin, serum creatinine, weight, foot checks, retinal screening and smoking status), glucose monitoring and insulin dosing.
• The standard covers all ages including children.
• The standard includes the information needed by health and care professionals about family planning and pregnancy to manage the diabetes but not everything needed to manage the pregnancy. The Maternity Record Standard sets out the information structure and content for managing a pregnancy.
• The standard is relevant for a wide variety of healthcare settings including primary care, secondary care and community and social care settings (e.g. care homes and domiciliary care).
• The National Diabetes Audits (for adults and children) were considered in the development of this standard with the aim of enabling information recorded for the purposes of direct care to be reused for the audit

• Prisons, schools, police and armed forces – some of the information in the standard may work for some of these settings but it was not tested in consultation.
• How the information should be presented to the person viewing it e.g. graphs or summary dashboards or who should be able see or change what information.
• A definition of where the information should come from, how it should be processed and how and where it should be stored.