Case study: Transforming diabetes care through standardised information sharing
High-quality, standardised data is the bedrock on which effective digital solutions are built and form a basis for effective collection and sharing of information. Having the ‘right’ data is key to delivering excellent care and serves as a foundation for innovation, research and AI.
This case study describes our exemplar work on diabetes, from identifying the need to improve information sharing to piloting a solution in real life – an information standard. It sets out the work required to develop it and outlines benefits that will result from its wide implementation.
The PRSB’s Diabetes Record Information Standard enables sharing of diabetes information between people and professionals across all care settings, including self-management data from digital apps and medical devices.
This example focuses on diabetes, but the same development approach could be applied to any long-term condition. Whether you are thinking about a new standard development, or need help with a standard adoption, this case study will be a useful first stop on your learning journey.
Background
- An estimated 5.3 million people in the UK will be living with diabetes by 2025.
- If left uncontrolled it can lead to serious complications for people’s heart, eye, kidney and foot health.
- Most people with diabetes self-manage their condition, which involves self-monitoring of blood glucose (fingerstick testing) or increasingly using flash or continuous glucose monitoring devices.
- People on insulin (mostly type 1 diabetes) use multiple daily injections along with meals but an increasing number use connected insulin pens, insulin pumps, and hybrid closed loop systems
- Technology for monitoring and managing diabetes is continuously evolving.
- People with diabetes have frequent contact with their GP and specialist diabetes teams made up of professionals across different care settings and organisations (e.g. diabetologists, diabetes specialist nurses, dietitians, psychologists and podiatrists).
Why standardised information sharing is important
The challenges |
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Diabetes data for a review can be held in many different systems e.g. diabetic eye screening systems, patients’ monitoring devices, structured education systems. |
Diabetes teams cannot always access the data before reviews, spend a long time pulling the data together or have to access it using multiple applications (for example, there is a separate application to view data from each manufacturer of a medical device). |
Professionals cannot always access information to support risk stratification e.g. glucometrics for patients with T1 within a population. |
Patients are often asked to repeat blood tests and appointments because data hasn’t been shared between care settings – this also results in the delay of other appointments. |
As the data isn’t shared digitally, patients often carry paperwork.
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Diabetes professionals cannot always access information to support risk stratification e.g. glucometrics for patients with T1 within a population.
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The benefits of standardised information sharing |
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Supporting the integration, visualisation and reporting of data from devices and apps to improve glycaemic control and quality of life. |
Reducing the time spent by clinicians collating information from different sources, e.g. eye screening results, lab test results. |
Reducing the need for professionals to access multiple software platforms at the same time to get a full picture of a person’s condition. |
Sharing key diabetes information with hospitals, such as results of a recent foot check and insulin dosing information, to reduce the clinical risk of diabetes management in inpatient settings. |
Reducing the number of requests for people with diabetes for clinically unnecessary repeated tests and appointments. |
More opportunities for support and training for people with diabetes, such as decision support and coaching, basic device training, and optimisation of device settings. |
Developing the standard
Our development approach included wide consultation with all relevant health and care disciplines, IT system suppliers and people with diabetes at scale, resulting in more than 500 consultation participants.
Our methodlogy
All our members understand the critical importance of high quality care records and we work together on standard development projects.
Early research ensures our work is evidence based, and then developed through consultation with our members and other relevant stakeholders, focusing on frontline staff and people who use the services.
Everyone agrees what information should be recorded at any stage of a person’s treatment to ensure high quality care can be provided.
Piloting the standard
We have recently finished running three pilots to test the usability and benefits of the standards which will be shared soon. The aim of the pilots is to test it in real-life environments, to gather insights on how data sharing could support clinical pathways, and explore some of the data sharing concerns that arose during consultation.
North-West London and MyWay Digital Health
Exploring transferring structured diabetes data to Shared Care Record:
- eLearning progress (structured education outcomes)
- Clinically-recorded data – observations, foot screening
- Eye screening results
- Home-recorded data – BP, weight, goal setting, PROMs
- Device data – blood glucose meters, CGM, activity trackers
DigiBete
Exploring what children and young people want to capture in their app and share with their clinical teams:
- About Me
- Questionnaires – e.g. Diabetes distress, Hypoglycaemia awareness or fear
- Insulin administration, checking injection sites
- Checking feet
- Finger prick information / Continuous Glucose Monitors
DigiBete is consulting with children, young people and their families and clinicians to understand which parts of the standard they want to adopt in the app and are developing a prototype aligned with the standard.
The South London Health Innovation Network
Exploring the sharing of data on diagnosis in secondary care of Gestational Diabetes Mellitus (GDM) with primary and community care that is necessary for ongoing care but does not always occur efficiently or effectively. The HIN is working with secondary and primary care in South-East London to understand:
- What essential data should be shared by secondary care to enable the diagnosis and care plan to be recorded and actioned in primary care
- The mechanisms and process for sharing GDM diagnosis information between secondary and primary care.
The HIN will revise and optimise the secondary GDM diagnosis letter template(s) in alignment with the diabetes standard and test the sharing of a revised GDM diagnosis letter.
Working with suppliers
The PRSB has been working with device manufacturers to help them to develop interfaces to support sharing of diabetes management data (e.g. for Continuous Glucose Monitors, Insulin Pumps and Hybrid Closed Loop Systems) in line with the standard. We’re also working with suppliers to provide independent evidence of conformance with standards in supplier systems through our Standards Partnership Scheme.
The information in the boxes below outlines what software suppliers have told us:
Where does information sharing break down?
- Sharing a care plan
- Sharing self-management data (e.g. blood pressure, weight, glucose levels)
- Sharing of test results (identified as a major issue).
What approaches to data sharing are available now and what will be available in the future?
- Now: Shared Care Record at ICS or local collaborative
- Future: Interoperable diabetes record including via person held apps allowing their record to travel with people with diabetes.
What technical resources are needed to support implementation?
- Clarity on what is a must have and what is a should have
- High level summary templates/views and specialist templates/view for different professionals.
What technical standards are needed?
- Now: needs to support existing interfaces
- Medium term: FHIR standard (profiles) – concern about wasted work
- Clarity on data items (and codes) required – suppliers can work out how to share.
What would help drive uptake?
- Mandate conformance with the standard in procurement frameworks
- Mandate that all data collected and displayed must be accessible for use in software for NHS systems (or third-party systems in use in the NHS) in procurement frameworks
- Central repository for validated responses to a standardised data protection questionnaire to avoid redoing for every trust.
Supplier conformance and assessment
We proudly work with suppliers to provide independent evidence of conformance with standards in their systems. Whether you’re looking for support and guidance in our standards implementation or procurement, our Standards Partnership Scheme is here to help you. Get in touch today.
Next steps
- Results of the pilots will be evaluated and published in autumn 2024 – we expect these to encourage more suppliers to follow the leaders and adopt the standard in their solutions.
- The standard has achieved an Information Status Notice (ISN), which mandates its implementation by health and social care organisations in England.
- We will track the roll-out of the standard and continue driving it until it becomes the norm.
“Once we have the right information in front of us, we can make effective clinical decisions more consistently and engage in meaningful consultations; without that information, it’s often guesswork. People with diabetes deserve better.”
Iain Cranston, Diabetologist and Endocrinologist at the Portsmouth Hospital University NHS Trust
Resources
The Diabetes Information Record Standard
View the full standard and supporting documentation.
Diabetes implementation toolkit
A step-by-step guide to help suppliers and organisations implement the standard.
Support services
Proactive support for our standards and ongoing maintenance and release management of published standards.