Getting to grips with the standard
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. People are increasingly using medical devices to help manage their diabetes. These include devices for monitoring glucose and delivering insulin.
For health and care professionals to advise and support a person with the self-management of their diabetes they require access to information about the person’s diabetes and related conditions. This could be the latest foot check, eye screening and test results or self-management data and this information isn’t always available to professionals when they need it.
The Diabetes Information Record Standard enables consistent recording and structuring of vital information, allowing coded data to be shared across hospital, community and GP systems.
Sets out the information that is needed by a health and care professional about a person with diabetes to best advise the person on the management of their diabetes.
Sets out the self-management information that people have told us they want to share with their health and care professionals.
Enables the sharing of information held in records in different systems by providing a standardised way of recording the information.
Supports information sharing across multi-disciplinary teams so can be used across health and social care.
The benefits
This standard will enable accurate, up-to-date information sharing between health and care professionals and the person receiving diabetes care. Professionals will have timely access to the information they need from electronic records, self-management apps, and devices. Find out more benefits by clicking on the icons in the image below:
Exploring the standard
The standard has two information models covering:
- The information health and care professionals have said they need to best advise a person with diabetes
- The information recorded by the person with diabetes during self-management that they may wish to share with health and care professionals
Some of the information in the standard is routinely collected as part of a person’s care record and not just related to diabetes management. Other information would be collected and recorded primarily in the management of the diabetes.
The sections below describe the different types of information that can be recorded in a person’s diabetes record using the Diabetes Record Information Standard.
The following sections describe information that should be recorded or made visible to health and care professionals involved in the care of a person with diabetes:
| Item | Description |
| Person demographics | The person’s details and contact information, e.g. name, date of birth, gender, ethnicity, NHS number, email address. |
| GP practice | Details of the person’s GP practice e.g., GP name, GP address and practice identifier. |
| About Me | Information that the person thinks it is important to share with professionals. This could include information about their needs, preferences, concerns and wishes e.g., what they would like to happen if admitted to hospital. |
| Individual requirements | Specific requirements of the person that relate to the changes you may make to communication/environments, e.g. to support mobility, cognition, reasonable adjustments |
| Alerts | Any significant information meriting a specific and highly visible warning to any user (e.g. metallic implant, potential dangerous pet). |
| Legal information | Information that relates to decision making which has a legal impact including consent for information sharing e.g. Diabetic Eye Screening programme information sharing consent status. Other relevant legal information such as power of attorney, consent relating to a child, ADRT (Advance Decision to Refuse Treatment) etc is defined in other PRSB standards and should be accessible to users. |
| Safeguarding | Any concerns in relation to safeguarding and is applicable to children and adults. |
| Professional contacts | Current and historic details of health and care professionals, teams or organisations involved in the care of the person.
This section includes flags to indicate whether the contact (which could be a team):
Also supports recording of the reason the person left a service e.g, transition from paediatric to adult diabetes service. |
| Personal contacts | Personal contacts (e.g. family, friends, relatives etc.)
It is important to know who normally administers the person’s insulin if they are unable to do it themselves.
This section includes flags to indicate whether the contact:
|
| Participation in research | Used to flag participation in clinical trials or other research initiatives.
When a person with diabetes is enrolled on a drug trial or intervention, the GP receives detailed information from the research sponsor |
| Referral details | Current and historic referrals.
Examples of diabetes related referrals would include referrals to the foot protection service, to an ophthalmologist, to structured education, to a psychologist and to a dietitian. |
| Contacts with professionals | Details of the person’s contacts with services, their encounters. includes outpatient appointments, home visits, hospital and outpatient attendances, out of hours GP visits, clinic appointments, social worker visits etc.
For children with diabetes it is important to know when they attended their last appointment with a dietician and psychologist. |
| Admission details | All instances where a person is admitted to an inpatient setting.
Identification of hospital admissions for diabetic complications (e.g. hypoglycaemia, Diabetic ketoacidosis (DKA), Hyperosmolar Hyperglycemic State (HHS), and ulcers) and mental health related admissions are particularly important for healthcare professionals in identifying people with diabetes at risk of deterioration or harm.
|
| Discharge details | Summary details of the person’s discharge from hospital. |
| Emergency care attendance | Summary details of the person’s emergency care attendance.
Unscheduled care/ emergency attendances are important information for healthcare professionals in identifying people with diabetes at risk of deterioration or harm.
|
| Future appointments | The details of any future appointments the person may have. This can include both health and care appointments, for example a home visit from a domiciliary care worker.
People want to be able to set the agenda, topics for their appointment. Agenda is not included in the standard as a separate data item however, local implementers should consider how this requirement can be delivered.
|
| Vaccinations | Details of vaccinations.
Information about pneumococcal and Influenza vaccines were highlighted as being particularly important for people with diabetes. |
| Problem list | Summary of medical, social or behavioural problems worth knowing about the person, e.g. diabetes diagnosis, complications and comorbidities (including heart disease, thyroid disease, coeliac disease, sleep apnoea, mental health conditions and learning disabilities). The number of specific episodes related to diabetes including clinically significant hypoglycaemia, severe hypoglycaemia, Diabetic ketoacidosis (DKA) and Hyperosmolar Hyperglycaemic State (HHS) are important and should be recorded. |
| Procedures and therapies | All procedures undertaken should be visible to healthcare professionals involved in the person’s diabetes care, including diagnostic and therapeutic procedures and therapies (medical and psychological procedures and therapies).
Procedures specific to diabetes such as an annual diabetes review and the provision of wearable continuous glucose monitoring devices should be recorded as procedures.
|
| Social context | Information about the social setting in which the person with diabetes lives, such as their household (type of accommodation), current occupation (including whether the person works part-time or does shift work), driving status, meal patterns and lifestyle factors (smoking, alcohol and substance use). |
| Family history | The record of relevant illness in family relations deemed to be significant to the care or health of the person with diabetes, including mental illness and suicide and other information about conditions that may run in a person’s family. |
| Investigation results | Details of investigation results. All investigation results should be visible to healthcare professionals involved in the person’s diabetes care (including diagnostic investigations).
Key investigation results relevant to the nine care processes of diabetes management are:
|
| Signpost details | Details of any services that the person with diabetes has been signposted to, for example a diabetes support group, by providing the person with the name of an organisation and their contact details e.g. telephone number, website (it is not a referral). |
| Investigations requested | Details of investigations requested. All investigation requested should be visible to healthcare professionals involved in the person’s diabetes care. |
| Examination findings | Details of examinations performed by healthcare professionals (e.g. foot screening) or self-examinations performed at home by the person with diabetes or their carer e.g. the diabetic foot checks that people with diabetes are encouraged to perform daily. This section also supports the recording of self-measured observations (under observations record entry) e.g. blood pressure, self-monitoring of blood glucose or data from wearable devices such as ambulatory continuous glucose monitors (including summary glucometrics). |
| Pregnancy status | The pregnancy status of the person, including pregnancy planning (which includes contraception and menstrual history). In addition, where the person with diabetes is an infant their length of gestation at birth and feeding status should be recorded here. |
| Assessments | Details of assessments that health or care professionals or the person with diabetes has completed in the health or care setting or at home.
Assessments particularly relevant to diabetes care include:
|
| Risks | The risk to the person or others, this includes any risk the person might cause to themselves or to others. e.g. suicide or self-harm. |
| Allergies and adverse reactions | Details of any allergies and/or adverse reactions, e.g. type of reaction, causative agent, severity. |
| Medications and medical devices | Medication and medical devices prescribed to or used by the person should be visible to health and care professionals. Medication administration is included specifically for recording insulin dosing. This includes:
Devices used in diabetes self-management could include ambulatory real-time or ‘flash’ continuous glucose monitors (CGM), blood glucose meters, insulin pumps or connected insulin pens, ambulatory blood pressure or heart rate monitors or accelerometers for counting a person’s physical activity as ‘steps’.
|
| Information and advice given | Information or advice given to the person, carer, other authorised representative, care professional or other third party. For example, a GP may record here that they gave advice on smoking cessation, weight management and exercise to a person with type 2 diabetes. |
| Developmental skills | The developmental skills (milestones) achieved by a child with diabetes. |
| Plan and requested actions | Treatment plan for the treating team or clinician and any actions requested following an encounter, making it clear who is responsible for the action. |
| Care and support plan | Diabetes care planning typically takes place during an annual review where the person will discuss their test results, medications and anything that is concerning the person about their diabetes and its impact on their life. The care and support plan records the decisions reached during conversation between the individual and health and care professional about future goals, targets and actions and also records progress. |
| Contingency plans | These are the things to do and people to contact, should an individual’s health or other circumstances get worse. For people with diabetes this might include a care plan for sick days.
|
| Additional support plans | These are care plans created by a service and shared with others but only updated by the service that created them. Examples of additional support plans for people with diabetes might be a school individual healthcare plan (IHP) for a child with type 1 diabetes, a hypo/ hyperglycaemia action/care plan for a person with type 1 diabetes and safe discharge plans for people using insulin. |
| Documents (including correspondence, audio and images) | Any additional documents relating to the person’s care, e.g. scan images or a report. For people with diabetes this could include eye screening images from the diabetic eye screening service or foot images (including photographs taken by people with diabetes (or people acting on their behalf).
|
| National screening programmes | Details of the results of diabetic eye screening.
This includes screening status (whether the person is excluded and whether screening has been offered or declined, details of the screening process performed for example retinal photography or ocular slit lamp procedure, screening results (grade) and screening outcome (this could be a referral or continue with routine screening). |
| Structured education | Details of the person’s attendance on a diabetes structured education programme such as Diabetes Education and Self-Management for Ongoing and Newly Diagnosed people (DESMOND) or Dose Adjustment for Normal Eating (DAFNE). |
The following table includes information that may be recorded by the person with diabetes (or their carer). This could be recorded manually or automatically using medical devices.
This table shows the information that would be recorded during diabetes care and support planning.
See the Standards Explained section for more information about how PRSB information standards are structured.
The full standard
To explore the full standard you can view this on our website at:
theprsb.org/standards/diabetesstandards/
It is important to also review the associated implementation guidance which is also on the page:
For more information about clinical safety risk management, got to Section 4 – Taking stock and planning.
How to use the standard
The standard should be implemented within care record systems and apps.
An Information Standard Notice (ISN) has been published which sets out a schedule by which provider organisations must comply with the standard.
The standard should be implemented alongside the Provenance Data Standard, which supports the recording of:
- The performer of the action (professional, device or person) and where and when it took place and / or
- The author of the record entry (professional, device or person) and when it was recorded
Not all care record systems and apps will need to implement the entire information model. It will depend on the type of information being recorded or displayed in the system or app. IT suppliers will need to determine which parts of the standard are relevant.
We have developed a set of profiles designed to guide IT system and app suppliers and define a subset of information relevant for different scenarios.
PRSB recognises that implementers might be at the start of their journey and few, if any, will be able to implement 100% of the standard from the start, and so we have created ‘Must have’ items for every standard which when implemented fully and correctly are the minimum safe and effective implementation of the standard.
When to use the standard
The following scenarios describe cases in which the standard should be used. Please click on the images below to view and download a full size version:
Simulation examples
We have developed a set of examples that can be used to both implement and test the standard. There are four scenarios for people living with diabetes, covering a typical day or specific episode of their care.
Please note that these are only to demonstrate recording of a person’s information in a format aligned to the diabetes information record standard. They are not intended to be clinically accurate and should not be adapted for other purposes.
Click on the link below to open the examples. You can then select a persona from the ‘Patients’ drop-down menu. Clicking on the various events on the left-hand side of the screen will display corresponding entries in the record on the right, which can view in different formats.
View the diabetes simulations
Important considerations
- There are often vast amounts of data and information available and interpreting the data and applying it can be complicated. People managing their diabetes may need support with this. Professionals may also need education in understanding and interpreting the data.
- Not all people want to share every part of their personal health with everyone involved in their care. However, there are risks if people do not share certain information about their condition. Health and care professionals may not be able to provide the best advice without a full picture and this can lead to poorer decisions. Clear communication with the person is needed about who will be able to access the information and how it will be used.
- Some children and people with learning disabilities may not have the capacity to record or decide what information to share with health and care professionals therefore support from a carer or family member may be required and it would need to be clear where this had happened.
- People collect and use many different types of information in the daily management of their condition. They want to be able to share that information with healthcare professionals to inform their consultations. IT systems and apps should try to validate the data at the point of entry as far as possible to reduce the risk of transcription errors and the data being dismissed by the healthcare professional. Thereby providing a level of provenance and reassurance regarding accuracy.
- It is important that healthcare professionals have visibility of the provenance of any patient-generated data so they are able to apply clinical judgement on the validity of the information for clinical decision-making in the same way that they treat information recorded by any healthcare professional. Provenance information should include whether it was recorded by a device, if so what type of device (e.g. continuous glucose monitor), was it manually entered, if so by whom.
- In incorporating patient-generated data into electronic care records, consideration needs to be given to the impact on incentives (particularly for GPs and the data extracted for QOF). Existing collections and extractions that pull information from clinical systems may need to be modified to exclude the person’s self-monitoring information.
- With the rise in use of medical devices for self-monitoring and self-management it is important to consider digital poverty and not exacerbate inequalities. While the digital world becomes stronger there are still weak spots with 1.5 million across the UK having no internet access. Use of digital devices to manage diabetes in children and young people is lowest in ethnic minority groups and the areas of highest deprivation. The ability to use digital tech can also reduce with age. Although these standards are for sharing of digital information, it is important that there remains a process for people to share information by other means.
- It is important to set expectations with people about monitoring and responding to patient-generated data. Apps and devices should indicate this in the software platform and the healthcare professional should set this out clearly, and follow-up with a written communication, at the point at which the person is initially given the device. This is to provide clarity on liability in the scenario where an individual has an urgent clinical issue which could potentially have been identified from the data collected and shared, but has not been reviewed and/or acted upon.
- Continuous glucose monitors can take between 96 and 1040 glucose readings in a day and if this data is included in the person’s electronic care record it may result in network and storage implications. There is also potentially a workload and capacity issue in terms of managing data and potentially adding it to records that will require consideration.
- Individual readings are generally less important than trends and summary metrics and how the data is displayed will aid faster review and interpretation (for example through graphing and use of summary statistics). The PRSB Diabetes Standard includes consensus summary metrics for glucose monitoring. Insulin delivery and glucose data are often visualised as an ambulatory glucose profile (AGP). See the Ambulatory Glucose Profile reports that use UK units for plasma glucose of mmol/ L.
Diabetes care planning
Personalised care and support planning is a series of facilitated conversations in which the person, or those who know them well, actively participates to explore the management of their health and well-being. A person’s diabetes care plan should ideally form part of their personalised care and support plan so that clinicians have a holistic view of the individual, the conditions for which they are being treated, and their goals, needs and preferences.
In diabetes care planning, the person will discuss their test results, medications and anything that is concerning them about their diabetes and its effect on their life. The goals and actions that are agreed as well as the person’s confidence in achieving the goals are recorded in the care plan.
In this short film, we hear about the importance of care plans for diabetes patients.
If a person does not have a personalised care and support plan, it is still possible to create a diabetes care plan using the diabetes record information standard.
PRSB Standards Explained
Why we need standards to record our health and care information in a consistent way so that it can be made available whenever it is needed.
Making change happen
Transformation programmes need clear goals, the right leadership and engaged staff and stakeholders. Get started by reading our information on transformational change.
PRSB Support Available
If you have a question for PRSB, please contact our support team. We have an expert team who can help you find the answer, or direct you to the right place.