Diabetes – new phase looking at standardising information from medical devices

Diabetes device data sharing

There has been a significant investment in technology to improve the lives of people with diabetes. Devices that help people to monitor and manage glucose levels lead to improved quality of life and fewer diabetes emergencies.
 
However, many of the potential benefits of this technology remain untapped. Health professionals cannot easily or quickly access patient-generated data between or during clinic sessions, whether for direct clinical care or, as a digital safety net, to support patient-initiated follow-up and ensure those who need support are prioritised for review.
 
Currently, data is often shown to the healthcare professional on a smartphone by the person with diabetes or accessed through proprietary systems. However, if integrated with electronic health records, this data could enable healthcare professionals to more easily provide better personalised treatment.
 
There is a rapidly a growing number of devices and proprietary platforms but there are currently no internationally agreed interoperability standards to enable consistent data sharing.

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Background - The Diabetes Standard

Commissioned by NHS England and developed by PRSB with input from over 500 consultation participants, version 1.0 was published in 2023 with an Information Standards Notice (ISN) under section 250 of the Health and Social Care Act 2012.
 
The standard is endorsed by organisations and professional bodies including the Association of British Clinical Diabetologists, Diabetes UK, Royal Colleges of Emergency Medicine, General Practitioners, Nursing, Ophthalmologists, Psychiatrists, the Royal Pharmaceutical Society, the UK Kidney Association and the College of Podiatry.
 
The next release is planned for 2026 as part of this phase of work focused on patient-generated data from diabetes management devices.

 

 

the current diabetes standard

Aims of next phase

This next phase of work will build on the existing record standard, enabling the standardised, safe, interoperable, and scalable sharing of patient-generated data from diabetes management devices across health and care settings in England.
 
The main focus will be to support clinicians to integrate patient generated data from diabetes management devices into routine care safely and efficiently. We will also explore how this data can be used to identify people with a higher clinical risk, so that clinical resources are directed to those who need support most, particularly where capacity is limited, and services can be redesigned around a more proactive, risk based approach.
 
Throughout this work, we will collaborate with healthcare professionals, the Association of British HealthTech Industries, industry partners, Diabetes UK, and international standards initiatives to develop solutions that support the sharing of patient-generated data. This data may be captured from Continuous Glucose Monitors (CGM), insulin pumps and connected insulin pens and Hybrid Closed Loop/ Fully Closed Loop systems (which are automated insulin delivery systems: including sensor glucose readings, insulin delivery events and information about the algorithm used for calculation).

Areas of focus

1. Information models that align with the latest international clinically-validated consensus guidance for insulin and glucose metrics (e.g. time in range)
2. Scalable architectural options to support implementation of diabetes device data sharing across the NHS.
3. HL7 FHIR resources to support the sharing of data from diabetes devices based on international standards.
4. Information Governance and medico-legal guidance to provide clarity on lawful bases under UK GDPR and the common law duty of confidentiality for processing device data for direct care and population health management. Guidance will address medico-legal concerns, including clinician liability where device data is accessible outside routine appointments, clarification of expectations regarding active monitoring versus availability of data and risk management approaches and patient communications.
5. Consensus agreement for the consistent display of data supporting clinicians in safely and effectively using device data. 
6. Identification of pilot areas for testing and evaluating the outputs from this work.

Consultation

We will be seeking input as part of the consultation process and working with stakeholders to inform development of this next phase of the standard. Information and invitations to get involved will be shared as the work progresses.

Please follow our social media channels and visit this page for updates. If you are interested in contributing to this work, please complete the form below or contact us at info@theprsb.org.

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Better records for better care

Personalised care and support planning for people with severe mental illness

A review of a sample of current care plans, and the way they have been developed, may be helpful in identifying the priorities for this improvement. The PRSB Implementation Guide provides more detailed explanations about each element of the plan, including advice on how the planning process might be best conducted.
These questions might form a checklist for current plans to be compared with. 

1. Does the plan include an About Me section in which the service user, in their own words, can indicate the information they want to be available about their lives, their values, their interests, and priorities, available for all those who may care for them?
2. Is the approach to developing a care plan patient centred and engaging, allowing plans to be based on patient priorities goals, and aspirations, along with the actions they plan to take and the support that they will receive?
3. Is there space for a “formulation” to be recorded in which the person receiving care and the professionals who provide it, share and record the personal meaning and the origins of the person’s difficulties?
4. Are relevant procedures and therapies recorded?
5. Where relevant, are one or more contingency plans included for anticipatable disruptions, exacerbations, or deterioration, and do they include advice on what to do and points of contact for those called upon to respond?
6. Where relevant are additional supporting plans incorporated, (an example being an “educational and health plan” for someone with a neurodevelopment disorder)
7. Is a version of the plan available to a service user (if they wish to have it) in a form and format that they can understand and find to be of value?
8. How is a version of the plan available to the GP and other key parts of the health and care system?

Work conducted by PRSB and partners recently has looked specifically at the suitability of this approach to the development and documentation of care and support plans for people with Severe Mental Illness. This resulted in an updated version of the standard (v1.4), for use by any service and for any group of service users, but with some modifications to ensure that it meets the needs of this community. The approach to a patient centred process of identifying goals, hopes, and values, and the support needed to achieve them, is fully compatible with and can be conducted using, specific tools in use in mental health, such as DIALOG, DIALOG+, and ReQoL, for example. 

Where analysis indicates the need for improvement in the content and process of personalised care and support planning for patients with Severe Mental Illness, specific improvement projects should be instituted to co-design with service users and their representatives, and the relevant staff groups, new approaches, and documentation that would be of value in delivering improvement. The toolkit includes a range of existing resources that could be used to engage in this improvement work, including signposting to relevant existing approaches informed by patient experience-based design.

Moving to a single holistic plan

A review of a sample of current care plans, and the way they have been developed, may be helpful in identifying the priorities for this improvement. The PRSB Implementation Guide provides A key development, consistent with national policy on support for Personalised Care across all health and care sectors, is the move towards an individual with complex needs having a single, integrated, care plan, rather than a series of plans developed by different parts of the health and social care system in isolation of one another. For a patient with severe mental illness, the related concerns and challenges might form a very prominent part of such an integrated plan; many will also have concurrent health challenges and needs. The intention is that the relevant services work together to plan and wrap support around the patient and their family in an integrated way, rather than as a series of sequential or disconnected encounters in which the service user or their friends and family have to adopt the role of the integrator.

A starting point would be to agree priority groups of service users who may already have more than one care plan because they need care from more than one part of the system of health and social care. This could be initiated by looking at service users registered with some sentinel practices or PCNs. Alternatively, the approach might focus initially on people with defined co-morbidity or risk that entails collaborative care with agencies beyond specialist mental health services.

The focus here is on the process of care planning and agreement on what should be shared, rather than solely on the technology used;

1. What is the process to agree which professional will initiate care planning and act as the “lead point of contact” for the service user?
2. Will initial plans be agreed with the service user in joint consultations or sequentially? Where and how will they be conducted?
3. What will be the process to agree the elements of the plans which should be available to professionals and potential authorised users beyond the immediate care teams, (A&E services, Ambulance Services, Social services, etc.) with the service user’s consent?
4. How will elements of the plan be updated following consultations in a way which is proportionate, to allow contact and progress notes to be maintained by the service conducting the consultation, whilst avoiding unnecessary work for partners in care if there is no significant change to the personalised care and support plan?
5. What are the implications for workload, logistics, and administration arising out of these decisions?

The answers to these questions and others will best be elicited through focused joint working, grounded in real, or at least realistic examples. This will entail process mapping, and co-design with a range of professionals, service users, and families. Resources from the toolkit and outputs from the Simulation element of this project will be valuable. Some organisations would adopt an approach such as a Rapid Process Improvement Workshop, planned over several weeks and conducted over a number of sequential days, to develop prototype ways of working that could be tested in the field.

CHAT theory also explicitly addresses five areas which if addressed systematically will help overcome stakeholder differences in pursuit of the common goal:

1. Understanding the artefacts that characterise the group and its activity.
• The artefacts might be clinical settings or the forms and templates used to capture and share information. During the pilot we heard about hard copy Dialog response forms; locally generated templates for collating information from different systems; letters and emails to GPs; images, poems or other non-text artefacts that service users might want to include in their ‘about me’ or care plan.

2. Understanding the multi-views of the group. Such groups are always a community of multiple points of view, traditions and interests. 
• Different participants in the group will have different roles and will bring to the group and their roles their own histories, language, and ‘rules’. During our Stocktake preparations and workshops we worked with psychiatrists, mental health nurses, occupational therapists, social workers, transformation leads and voluntary sector representatives, all professions and interests with their own language, approaches professional ‘rules’ but united in their interest in care plans, care planning.

3. Activity systems (like the ICSs) take shape and get transformed over periods of time. ‘Historicity’ is a term coined to express how the group’s problems and potentials can only be understood against their own history. 

 

• ‘We’ve always done it this way’, ‘that didn’t work before’, ‘it’s always like this’, ‘it wasn’t always like this’, ‘they are changing things again’, are all typical statements that often frustrate those charged with overseeing change initiatives. Without addressing the experiences that lie behind such comments you risk repeating mistakes of the past, alienating your stakeholders or just not understanding the real starting point for your transformation project. This is particularly the case for the implementation of the PCSP standard, the success of which will be largely reliant on point-of-care practices and information protocols as well as having systems which are user friendly and appropriately configured.

4. The central role of contradictions as sources of change and development. Contradictions are not the same as problems or conflicts. Contradictions are historically accumulating structural tensions within and between activity systems. Collectively addressing contradictions in how policy, practice, culture and technology interact will empower teams to find genuinely novel solutions for apparently intractable challenges, like interoperability and shared care plan/planning. 

This links to the fifth principle that:

5. the possibility of expansive transformations in activity systems. As the contradictions of an activity system are aggravated, some individual participants begin to question and deviate from its established norms. In some cases, this escalates into collaborative envisioning and a deliberate collective change effort. “An expansive transformation is accomplished when the object and motive of the activity are re-conceptualised to embrace a radically wider horizon of possibilities than in the previous mode of the activity.”