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NHS England
NHS England, officially the NHS Commissioning Board, is an executive non-departmental public body of the Department of Health and Social Care. It oversees the budget, planning, delivery and day-to-day operation of the commissioning side of the National Health Service in England as set out in the Health and Social Care Act 2012.
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Accessible Information Standard
NHS England: Accessible Information Standard v1.1 - Implementation guidance
From 1 August 2016 onwards, all organisations that provide NHS care and/or publicly-funded adult social care are legally required to follow the Accessible Information Standard. The Standard sets out a specific, consistent approach to identifying, recording, flagging, sharing and meeting the information and communication support needs of patients, service users, carers and parents with a disability, impairment or sensory loss.
Further information
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Accessible information
NHS England: Accessible Information Standard v1.1 - Implementation guidance
Information which is able to be read or received and understood by the individual or group for which it is intended.
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Accommodation status
CLD Guidance, release 1 (February 2023)
Accommodation Status should be based on a person's latest known address / postcode during the reporting period. Where the Accommodation Status is not yet determined, for example where requests or assessments do not progress to services, then ‘Unknown’ can be chosen.
This field is essential because it will feed into two new outcome metrics in ASCOF: ‘Proportion of people who receive long term support who live in their home or with family’ and ‘Proportion of older people (65 and over) who were still at home 91 days after discharge from hospital’. Alongside this field, postcode and information from linked health data can also be used to infer accommodation status in some cases. These ASCOF metrics will be marked as experimental in the first year to reflect the fact that CLD is a new collection and that accommodation status may not be complete in the early returns.
Local authorities have indicated that they routinely record accommodation status for people with a learning disability aged 18 to 64, but not always other groups, since the existing ASCOF metric is ‘proportion of adults with a learning disability who live in their own home or with their family’. Local authorities should start to routinely record this information for all client groups. The comments box on AGEM's Data Landing Portal (DLP) should be used to indicate when this data is not yet available.
• Owner occupier or shared ownership scheme
• Tenant
• Tenant - private landlord
• Settled mainstream housing with family / friends
• Supported accommodation / supported lodgings / supported group home
• Shared Lives scheme
• Approved premises for offenders released from prison or under probation supervision
• Sheltered housing / extra care housing / other sheltered housing
• Mobile accommodation for Gypsy / Roma and Traveller communities
• Rough sleeper / squatting
• Night shelter / emergency hostel / direct access hostel
• Refuge
• Placed in temporary accommodation by the council (inc. homelessness resettlement)
• Staying with family / friends as a short-term guest
• Acute / long-term healthcare residential facility or hospital
• Registered care home
• Registered nursing home
• Prison / Young offenders institution / detention centre
• Other temporary accommodation
• Unknown
Data type: Defined list
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Accountability
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Accountability is one of the data protection principles: it makes the controller responsible for complying with the UK GDPR and able to demonstrate compliance.
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Address association type
NHS Data Dictionary
A coded representation of an ADDRESS ASSOCIATION [The type of usage of an ADDRESS for a PERSON, ORGANISATION, ORGANISATION SITE or LOCATION].
National Codes
Code Description
1 Main Permanent Residence
2 Other Permanent Residence
3 Temporary Residence
4 Correspondence (Non-Residence)
5 Main Business Premises
6 Invoice
7 Other Business Premises
8 Safe Haven ADDRESS
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Advocate
NHS England: Accessible Information Standard v1.1 - Implementation guidance
A person who supports someone who may otherwise find it difficult to communicate or to express their point of view. Advocates can support people to make choices, ask questions and to say what they think.
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Alternative format
NHS England: Accessible Information Standard v1.1 - Implementation guidance
Information provided in an alternative to standard printed or handwritten English, for example large print, braille or email.
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Application programming interface
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
This is the way one software application talks to another through what can be thought of as easy to read templates.
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Assessment type
CLD Guidance, release 1 (February 2023)
Events (Assessments only)
Assessments are a key event in the social care process and has therefore been included in the CLD specification to capture the full care pathway.
At minimum, local authorities should provide records for assessment events that involve a full assessment of eligibility for services under the Care Act 2014. Local authorities should also provide records for other types of assessment, including occupational therapy assessments of equipment including assistive technology and adaptations and reablement assessments. Where no eligibility assessment is made, the Assessment Type should be recorded as a Short Term Assessment.
DoLS, safeguarding, mental capacity and Mental Health Act assessments should not be included in CLD.
As set out under the ‘Events (All)’ section, carer assessments should be included where these records are available.
Assessment Type (Mandatory)
This field provides a categorisation for assessment events. It is recognised that local authorities will have different assessment practices and apply proportional and strengths-based approaches in different ways, including the ‘three conversations’ model.
If a determination of eligibility for services is made as part of the assessment, as set out under the Care Act, the Assessment Type should be recorded as a Long Term Assessment. This covers assessments of adults who may need care or support and carers.
Other types of care assessment, including occupational therapy assessments of equipment, reablement, and proportional assessments (Staged, conversation) that don’t involve an assessment of eligibility for services, should be recorded as a Short Term Assessment.
A financial assessment determines the client’s ability to pay for care services. There are three types of individual financial assessment/review for new and existing clients that should be included in CLD: new client financial assessments; planned financial annual reviews (statutory requirement); and ad-hoc financial re-assessments (when circumstances change i.e. client moves from Community to Residential). Annual updates connected to uprating at the beginning of the financial year should not be included as assessment events.
CLD excludes DoLS, safeguarding, mental capacity and Mental Health Act assessments,
The defined list of assessment types is:
• Short Term Assessment
• Long Term Assessment
• Financial Assessment
Data type: Defined list
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Autism spectrum disorder
CLD Guidance, release 1 (February 2023)
A single variable of ‘Autism Spectrum Disorder (ASD)’ to replace the two ‘Autism’ and ‘Asperger’s Syndrome’
ASD was adopted in 2022 by the World Health Organisation (WHO) using the latest version of the International Classification of Diseases (ICD-11).
In the Light Touch Review of SALT (2018), the National Autistic Society did not see value in separately capturing data of Autism and Asperger Syndrome, and owing to updates in diagnostic criteria, these Reported Health Conditions / comorbid conditions no longer matched the emerging single categorisation of ‘Autism Spectrum Disorder’. To be reported in CLD, ASD should be diagnosed and relevant to care needs.
‘Unknown’ should be used where the client’s ASD status has not been recorded.
• Yes
• No
• Unknown
Data type: Defined list
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BSL interpreter
NHS England: Accessible Information Standard v1.1 - Implementation guidance
A person skilled in interpreting between BSL and English. A type of communication support which may be needed by a person who is d/Deaf or deafblind.
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Bed-based intermediate care
NHS England Intermediate Care Programme (based on NICE NG74)
What and where? - Acute or community-based services that provide assessment and interventions to people in bed-based settings. For most people interventions last up to 6 weeks.
Why? - Aims to prevent unnecessary admissions to acute hospitals and premature admissions to long-term care, and to support timely discharge from hospital.
Who? - Delivered by multidisciplinary teams but most commonly by healthcare professionals or care staff (in care homes).
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Biometric data
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Personal data resulting from specific technical processing relating to the physical, physiological or behavioural characteristics of a natural person which allow or confirm the unique identification of that natural person, such as facial images or fingerprint data.
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Braille
NHS England: Accessible Information Standard v1.1 - Implementation guidance
A tactile reading format used by people who are blind, deafblind or who have some visual loss. Readers use their fingers to ‘read’ or identify raised dots representing letters and numbers. Although originally intended (and still used) for the purpose of information being documented on paper, braille can now be used as a digital aid to conversation, with some smartphones offering braille displays. Refreshable braille displays for computers also enable braille users to read emails and documents.
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British Sign Language
NHS England: Accessible Information Standard v1.1 - Implementation guidance
BSL is a visual-gestural language that is the first or preferred language of many d/Deaf people and some deafblind people; it has its own grammar and principles, which differ from English.
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Caldicott guardian
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
A senior person in an organisation responsible for protecting the confidentiality of patient information and enabling appropriate information sharing by providing advice to professionals and staff.
Reference in legislation or statutory guidance
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Care Programme Approach
Care Programme Approach: NHS England position statement (1 March 2022)
With the publication of the Community Mental Health Framework, the Care Programme Approach has now been superseded.
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Care co-ordinator
NHS England
Care co-ordinators help to co-ordinate and navigate care across the health and care system, helping people make the right connections, with the right teams at the right time. They can support people to become more active in their own health and care and are skilled in assessing people’s changing needs.
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Carer known by association
CLD Guidance, release 1 (February 2023)
‘Carer known by association’ should be used in cases when support for the carer has been provided and recorded solely in the cared-for person’s records during the reporting period. This is the only instance where a row of data will show person details and carer information, but not contain any event details.
‘Carer known by association’ rows of data are required when carer support is recorded solely in service user rows, e.g.
• the carer has been involved in an assessment with the person cared for and/or
• support is arranged for the cared-for person for the benefit of the carer e.g., respite care, and only appears on the cared-for person’s records
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Client funding status
CLD Guidance, release 1 (February 2023)
This field was introduced into the Release 1 specification in 2022 to support the identification of client funding arrangements as part of charging reform. It replaced the Full Cost Client field in the version 5 specification.
Given the delay to charging reform implementation from 2023 to 2025, the scope of the CLD collection has reverted to cover care that is either fully or partially funded by the local authority or care used by people who ask the local authority to organise it under Section 18(3) of the Care Act 2014. At this stage, health related funding should not be recorded.
This field will be retained in the specification in its current form, but we do not expect the 'Self-funder - Metering Only', 'Joint Health and Social Care Funded' or 'Fully Health Funded' response options to be used.
The use of this field should be solely informed by the results of financial assessments, not by the specific funding arrangements of services including elements of health and education funding. People who are assessed as having assets above the upper capital limit (specified in regulations issued under the Care Act 2014) should be recorded as '18(3) (full cost client)', people between the upper and lower capital limits should be recorded as 'Joint Client and Social Care Funded' and people below the lower capital limit should be recorded as 'Fully Social Care Funded'.
A person’s funding status is based on a financial assessment and may change over time. The most recent status should be recorded for this field. For example, if a person has a new financial assessment and their funding status changes as a result, the newly assessed status should be recorded in this row under person details.
Where a person's funding status has not yet been assessed e.g. at the request stage, the value 'Unknown - Individual Level' can be used.
As this new field requires information to be extracted from financial systems, the ‘Unknown - System Level’ value have been provided to enable collection issues to be identified and allow the field to be filled for the mandatory return.
The following options apply:
• 18(3) (full cost client)
• Self-Funder - Metering Only [Not expected to be used at this time]
• Joint Client and Social Care Funded
• Fully Health Funded [Not expected to be used at this time]
• Joint Health and Social Care Funded [Not expected to be used at this time]
• Fully Social Care Funded
• Unknown - System Level
• Unknown - Individual Level
Data Type: Defined List
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Client type
CLD Guidance, release 1 (February 2023)
This field is to distinguish between event rows that relate to service users and carers.
When a person enters the social care system, they may be assigned as a carer or service user based on the request reason and/or the assessment type, prior to any service provision being recorded.
The CLD collection includes adult service users aged 18 or over. People who make a request for support, or who have an assessment of their care needs, should also be recorded as a service user within CLD.
Carers includes adults and young carers aged under 18. Carers should only be included if they provide unpaid care for an adult who is aged 18 or over. Carers who are caring solely for children or young people aged under 18 should not be included in CLD.
Like SALT, paid care workers funded by direct payments, provided as part of a commissioned service or in a residential and nursing care setting are not in the scope of the collection and should not be included.
If a service user is also a carer, they may have separate eve
nts in CLD as a service user and as a carer.
‘Unknown’ should be used where the client type has not been recorded.
‘Carer known by association’ should be used in cases when support for the carer has been provided and recorded solely in the cared-for person’s records during the reporting period. This is the only instance where a row of data will show person details and carer information, but not contain any event details.
‘Carer known by association’ rows of data are required when carer support is recorded solely in service user rows, e.g.
• the carer has been involved in an assessment with the person cared for and/or
• support is arranged for the cared-for person for the benefit of the carer e.g., respite care, and only appears on the cared-for person’s records
Carer details should not be provided if they have not been actively involved in care assessment or provision, since they are unlikely to have given consent to share their details.
A worked example of how this data should be submitted is given in Annex D.
• Service User
• Carer
• Carer known by association
• Unknown
Data Type: Defined list.
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Clinical Commissioning Group
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Groups of GP practices, working with other health and care professionals, which are responsible for commissioning most health and care services for patients.
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Clinical Safety Officer
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Appointed to oversee the clinical risk assessment of a health IT product. They should be a clinician with a current professional registration.
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Commissioning
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Commissioning is essentially buying care in line with available resources to ensure that services meet the needs of the population. The process of commissioning includes assessing the needs of the population, selecting service providers and ensuring that these services are safe, effective, people-centred and of high quality. Commissioners are responsible for commissioning services.
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Common Law Duty of Confidentiality
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
This arises when one person discloses information to another, for example, patient to clinician, in circumstances where it is reasonable to expect that the information will be held in confidence. It:
1. 1. is a legal obligation that is derived from common law;
2. is a requirement established either within professional codes of conduct and/or that must be included within relevant employment contracts. It is also linked to disciplinary procedures through both these requirements.
It would also apply where confidential information is received or obtained from another organisation as the data subject would have a reasonable expectation that any recipient would hold it in confidence.
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Common law
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Laws that are based on court or tribunal decisions which govern future decisions on similar cases.
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Communication support
NHS England: Accessible Information Standard v1.1 - Implementation guidance
Support which is needed to enable effective, accurate dialogue between a professional and a service user to take place.
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Communication tool/Communication aid
NHS England: Accessible Information Standard v1.1 - Implementation guidance
A tool, device or document used to support effective communication with a disabled person. They may be generic or specific / bespoke to an individual. They often use symbols and / or pictures. They range from a simple paper chart to complex computer-aided or electronic devices.
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Communication tool/Communication aid
NHS England: Accessible Information Standard v1.1 - Implementation guidance
A tool, device or document used to support effective communication with a disabled person. They may be generic or specific / bespoke to an individual. They often use symbols and / or pictures. They range from a simple paper chart to complex computer-aided or electronic devices.
Reference in legislation or statutory guidance
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Community Mental Health Framework
Care Programme Approach: NHS England position statement (1 March 2022)
With the publication of the Community Mental Health Framework, the Care Programme Approach has now been superseded.
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Community Mental Health Framework
NHS England
The Community Mental Health Framework describes how the Long Term Plan’s vision for a place-based community mental health model can be realised, and how community services should modernise to offer whole-person, whole-population health approaches, aligned with the new Primary Care Networks.
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Community health services
NHS England
Shifting more care out of hospital and into the community is one of the improvements outlined in the NHS Long Term Plan and will help ensure we meet the changing health needs of the country over the coming decade.
Community health services cover a wide range of services and provide care for people from birth to the end of their life. Community health teams play a vital role in supporting people with complex health and care needs to live independently in their own home for as long as possible. Services also include health promotion services such as school health services and health visiting services. Many services involve partnership working across health and social care teams, made up of a wide variety of professionals including GPs, community nurses, allied health professionals, district nurses, mental health nurses, therapists and social care workers.
Services are mainly delivered in people's homes, (this includes care homes) but also in community hospitals, intermediate care facilities, clinics and schools.
Community health services include:
2 hour rapid crisis response services
District nursing
Child health services
Community occupational therapy
Community paediatric clinics
Community end of life and palliative care
Community physiotherapy
Musculoskeletal therapy
Pulmonary or cardiac rehabilitation
Community podiatry
Community speech and language therapy
Falls prevention services
Intermediate care services
Specialist nurses (for example, diabetes, COPD, heart failure, incontinence, tissue viability)
Bed-based community rehabilitation
Wheelchair services
Health visiting
School health services
Sexual health services
This list is not exhaustive.
Different types of organisations provide community health services including NHS trusts, community interest companies, social enterprises, local authorities and independent providers.
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Confidential Patient Information
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Defined in Section 251 (10) of the National Health Service Act 2006, patient information means:
(a) information, however recorded, which relates to the physical or mental health or condition of an individual, to the diagnosis of his condition or to his care or treatment, and
(b) information, however recorded, which is to any extent derived, directly or indirectly, from such information, whether or not the identity of the individual in question is ascertainable from the information.
Section 251 (11) states:
For the purposes of this section, patient information is “CPI” where:
(a) the identity of the individual in question is ascertainable:
(i) from that information, or
(ii) from that information and other information which is in the possession of, or is likely to come into the possession of, the person processing that information, and
(b) that information was obtained or generated by a person who, in the circumstances, owed an obligation of confidence to that individual.
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Consent
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Consent can be used for a number of different purposes, offering individuals real choice and control. When using consent, organisations need to be clear on why they are getting consent (for example to satisfy confidentiality, medico-legal reasons, or for processing data). Explicit consent requires a positive opt-in and must be evidential. The UK GDPR sets a high standard for consent. Often consent is not the appropriate UK GDPR legal basis for processing health and care data, and another lawful basis can be found. However, consent may still be required to meet the CLDC.
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Controller
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
The natural or legal person, public authority, agency or other body which, alone or jointly with others, determines the purposes and means of the processing of personal data.
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Controller
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
The natural or legal person, public authority, agency or other body which, alone or jointly with others, determines the purposes and means of the processing of personal data.
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Cost frequency (unit type)
CLD Guidance, release 1 (February 2023)
The frequency at which the unit cost occurs. For example, home care is likely to be ‘hourly’, whilst other services may be ‘weekly’ or a single ‘one-off’ payment. If the cost frequency of a service does not match any of the options given, a pro-rated weekly cost frequency should be given.
• Per Session
• Hourly
• Daily
• Weekly
• Fortnightly
• 4-weekly
• Monthly
• Quarterly
• Annually
• One-off
Data type: Defined list
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Costs (services only)
CLD Guidance, release 1 (February 2023)
Financial information is highly valuable information to have at client level including for:
• Reporting service cost benchmarking to local authorities.
• Analysing cost variation between services, including analysis of cost-effectiveness.
• Understanding cost variation across clients, as a key marker of the intensity of service required.
• Assessing changes in intensity of care and cost over time for individual clients.
From April 2023, the CLD collection will capture planned costs associated with services, rather than actual spend which is captured separately in the ASC-FR return. Despite the limitations of using planned cost information, we understand that planned spend will typically be easier for local authorities to provide and that in many respects it can be a preferred measure, reflecting care needs better and for insight into intensity of care.
The service categories below should have an associated cost in the CLD collection.
• All Long-Term Support, excluding CASSR Commissioned Support Services
• Short Term Residential Care, Short Term Nursing Care and Carer Respite
• Carers Support, excluding CASSR Commissioned Support Services.
The methodology of recording financial information is based on the trials in the North West Pilots, and consideration of the LGA Markets and Modelling Project where service costs were collected from volunteer local authorities.
The inclusion of Cost Frequency (unit type) is intended to allow flexibility in the way local authorities report the cost of services. If it is not possible to match the unit, costs can be aggregated to a time-period frequency.
Collecting the fields of ‘unit cost’, ‘cost frequency’ and ‘planned units per week’ will provide more timely data compared to the average fee rates in the existing local authority average data returns (ASC-FR and iBCF). This will enable DHSC to better understand the range of costs that local authorities face and the impacts of those on different groups of providers and clients when making policy decisions. It will also support understanding of provider market risk and facilitate forecast financial support required for the sector.
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Crisis response
NHS England Intermediate Care Programme (based on NICE NG74)
What and where? - Community-based services provided to people in their own homes (or care homes) to people in a crisis situation needing urgent support. Usually short-term interventions lasting up to 48 hours.
Why? - Aims to avoid hospital admissions.
Who? - Delivered by multidisciplinary teams but most commonly by healthcare professionals.
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Cyber threat
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
The possibility of a malicious attempt to damage or disrupt a computer network or system.
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Data Protection Act 2018
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
The DPA 2018 is the UK’s implementation of the General Data Protection Regulation (UK GDPR). It transposes the Law enforcement directive into UK law.
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Data Sharing Agreement
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
A DSA sets out a common set of rules to be adopted by the various organisations involved in a data sharing operation. These could well form part of a contract between organisations. It is good practice to have a DSA in place, and to review it regularly, particularly where information is to be shared on a large scale, or on a regular basis.
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Data breach notification
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
A duty on all organisations to report certain types of personal data breach to the relevant supervisory authority. The supervisory authority in the UK is the Information Commissioner's Office.
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Data protection impact assessment
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
A DPIA is a process to help identify and minimise the data protection risks of a project. Under UK GDPR, a DPIA is required for processing that is likely to result in a high risk to individuals.
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Data protection officer
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
An independent expert in data protection who helps monitor internal compliance, informs and advises on data obligations including Data Protection Impact Assessments and acts as a point of contact for data subjects and the Information Commissioner's Office.
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Data security
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Protecting data and information systems from unauthorised access, use, disclosure, disruption, modification or destruction.
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Data standard
NHS Data Standards Directory
What we mean by standards
This service contains standards, which we group into 4 categories:
- RECORD STANDARDS define what information to collect and how to format it, for example when registering a new patient
- DATA DEFINITIONS AND TERMINOLOGIES define the format of data items so they can be consistently represented, for example names of medications. Reference sets and controlled lists and also included.
- TECHNICAL STANDARDS AND SPECIFICATIONS specify how to make information available technically including how the data is structured and transported
- INFORMATION CODES OF PRACTICE are legal or best practice guidelines on how information should be handled
Not every standard that exists is listed in this service. You can find out which standards are included.
Benefits of using standards
There are many benefits to using data standards including:
- it’s more efficient to reuse existing approaches to recording or exchanging data than creating new ones
- it promotes quality by ensuring all care settings are aligned to standards that have been approved by qualified bodies
- it makes it easier to analyse data at the national level and see trends or problems if the data has all been standardised
- it is essential to achieving interoperability, which would allow IT systems across the country to share data. An example of this is hospitals being able to update GP records directly using their own systems instead of sending emails.
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Data subject
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
An identified or identifiable natural person.
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Date of birth
CLD Guidance, release 1 (February 2023)
Date of birth (DOB) should be reported for both service users and carers. DOB allows age and age bands to be derived for service users and carers and is also used for NHS batch tracing by the DSCRO (AGEM CSU).
There will be cases of people aged under 18 being included in submissions. Events related to the transition of a person from children’s social care to adult social care should be included even if they are below 18 when the event occurred. Under-18 carers of adults should also be included in submissions.
We understand that DOB is not always recorded for all carers and some other groups of service users. In these cases, the DOB field should be left blank. Approximate or estimated DOB should not be submitted. Local authorities should make plans to improve recording to capture this information.
Data type: dd/mm/yyyy (no time stamp)
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Date of death
CLD Guidance, release 1 (February 2023)
Date of death should be recorded where known. This field should be left blank where the person is known to be alive or where the Date of death is not known.
Data type: dd/mm/yyyy (no time stamp)
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Deafblind
NHS England: Accessible Information Standard v1.1 - Implementation guidance
The Policy guidance Care and Support for Deafblind Children and Adults (Department of Health, 2014) states that, “The generally accepted definition of Deafblindness is that persons are regarded as Deafblind “if their combined sight and hearing impairment causes difficulties with communication, access to information and mobility. This includes people with a progressive sight and hearing loss” (Think Dual Sensory, Department of Health, 1995)."
Further information
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Delivery mechanism
CLD Guidance, release 1 (February 2023)
*** Values have been consolidated from previous versions of the specification and now apply to carers and prison or community settings and can be identified separately from the service type variable.***
The inclusion of delivery mechanism provides further insight to the financial information reported for each service row.
For CLD the Delivery Mechanism is specific to the service line. This is a change to the Service Setting/ Delivery Mechanism methodology described in SALT, which is based on the hierarchy of all services recorded for the client or carer.
Part-direct payment is not on the defined list since this can be derived from the mix of service rows for a client. Direct Payment should not be chosen as a delivery mechanism for a person in a prison setting.
The variable ‘Self-Funder Metering Only’ should not be used at this time prior to the implementation of charging reform.
• Direct Payment
• CASSR Managed Personal Budget
• CASSR Commissioned Support
• Self-Funder Metering Only
Data type: Defined List
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Source
Dementia
CLD Guidance, release 1 (February 2023)
This field can be answered for all clients in scope of the CLD collection. Dementia should be reported if diagnosed and relevant to care needs. For the purposes of this field, diagnoses of Mild Cognitive Impairment (MCI) should not be included.
‘Unknown’ should be used where the client’s Dementia Status has not been recorded.
• Yes
• No
• Unknown
Data type: Defined list
Definition
of
from
Source
Direct care
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Has the same meaning as Individual Care. Both definitions below are taken from “Information: To Share or not to Share? The IG Review 2013”.
1. A clinical, social or public health activity concerned with the prevention, investigation and treatment of illness and the alleviation of suffering of individuals. It includes supporting individuals’ ability to function and improve their participation in life and society. It includes the assurance of safe and high quality care and treatment through local audit, the management of untoward or adverse incidents, person satisfaction including measurement of outcomes undertaken by one or more registered and regulated health or social care professionals and their team with whom the individual has a legitimate relationship for their care.
2. Direct care is provided by health and social care staff working in care teams, which may include doctors, nurses and a wide range of staff on regulated professional registers, including social workers. Relevant information should be shared with them when they have a legitimate relationship with the patient or service user.
Further information
Definition
of
from
Source
Disability
NHS England: Accessible Information Standard v1.1 - Implementation guidance
The Equality Act 2010 describes disability as follows, “A person (P) has a disability if — (a) P has a physical or mental impairment, and (b) the impairment has a substantial and long-term adverse effect on P's ability to carry out normal day-to-day activities.” This term also has an existing Data Dictionary definition.
Further information
Definition
of
from
Source
Disabled person
NHS England: Accessible Information Standard v1.1 - Implementation guidance
Article 1 of the United Nations Convention on the Rights of Persons with Disabilities has the following description, “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”
Further information
Definition
of
from
Source
Duty of transparency
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
The UK GDPR principle of accountability requires that organisations must be able to demonstrate compliance. Part of this involves transparency and the provision of information to subjects – previously referred to as fair processing.
A specific requirement of the UK GDPR is that organisations must include their lawful basis for processing information provided to patients, service users and staff.
Definition
of
from
Source
Duty of transparency
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
The UK GDPR principle of accountability requires that organisations must be able to demonstrate compliance. Part of this involves transparency and the provision of information to subjects – previously referred to as fair processing.
A specific requirement of the UK GDPR is that organisations must include their lawful basis for processing information provided to patients, service users and staff.
Definition
of
from
Source
Easy read
NHS England: Accessible Information Standard v1.1 - Implementation guidance
Written information in an easy read format in which straightforward words and phrases are used supported by pictures, diagrams, symbols and / or photographs to aid understanding and to illustrate the text.
Definition
of
from
Source
Electronic Palliative Care Coordinating System
NHS England
Electronic Palliative Care Coordination Systems, or EPaCCS, is a means to capture and share information from people’s discussions about their care. The aim of this is to ensure that any professional involved in that person’s care has access to the most up to date information, including any changes to their preferences and wishes and personalised care plans.
The core record is usually kept by the General Practitioner in their electronic system and information sharing agreements put into place to allow relevant professionals involved in the person’s care to view and therefore be aware of the individual’s palliative and end of life personalised care plan.
Value set
for
from
Source
Eligible needs identified
CLD Guidance, release 1 (February 2023)
This field should be completed for long term assessments only, where the person’s eligibility for services under the Care Act 2014 is determined.
Under the Care Act 2014, local authorities must provide information and advice considering what is available to prevent the need for care and support for all needs identified as non-eligible for support. Where a person has at least one need identified but is not eligible for support under the Care Act 2014, this should be recorded as ‘Non-eligible needs identified’.
Not all local authorities record non-eligible needs: in these cases, ‘Eligible needs identified’ should be recorded when these are identified, and ‘No needs identified’ should be recorded otherwise.
• Eligible needs identified
• Non-eligible needs identified
• No needs identified
Data type: Defined list
Value set
for
from
Source
Employment status
CLD Guidance, release 1 (February 2023)
Local authorities have indicated that this information is routinely collected for clients aged 18 to 64 with a Learning Disability (the PSR should be ‘Learning Disability Support’). For this reason, Employment Status is only mandatory for people with the PSR, ‘Learning Disability Support’. Where available, local authorities can submit Employment Status for other clients; this is encouraged for unpaid carers. ‘Unknown’ should be used where the client’s employment status has not been recorded.
• Paid: Less than 16 hours a week
• Paid: 16 or more hours a week
• Not in Paid Employment (seeking work)
• Not in Paid Employment (not actively seeking work / retired)
• Not in Paid Employment (voluntary work only)
• Paid: Hours per week unknown
• Unknown
Data type: Defined list
Definition
of
from
Source
Enhanced health in care homes
NHS England
We have an ambition for the NHS to strengthen its support for the people who live and work in and around care homes. People living in care homes should expect the same level of support as if they were living in their own home - but this can only be achieved through collaborative working between health, social care, voluntary, community, and social enterprise (VCSE) sector and care home partners.
The NHS Long Term Plan commits to rolling out the Enhanced Health in Care Homes (EHCH) model across England by 2024, starting in 2020. This model moves away from traditional reactive models of care delivery towards proactive care that is centred on the needs of individual residents, their families and care home staff. Such care can only be achieved through a whole-system, collaborative approach.
Value set
for
from
Source
Ethnicity
CLD Guidance, release 1 (February 2023)
Ethnicity should be completed in line with the categories used in the 2021 census to facilitate vastly improved diversity monitoring covering all events. ‘Undeclared or Not known’ and ‘Refused’ options should be used where a person's ethnicity has not been recorded.
Please note that the defined list has been corrected. The Release 1 guidance published in September 2022 incorrectly used the NHS Data Model defined list for ethnic category.
• Asian or Asian British - Indian
• Asian or Asian British - Pakistani
• Asian or Asian British - Bangladeshi
• Asian or Asian British - Chinese
• Asian or Asian British - Any other Asian background
• Black, Black British, Caribbean or African - Caribbean
• Black, Black British, Caribbean or African - African
• Black, Black British, Caribbean or African - Any other Black, Black British or Caribbean background
• Mixed or multiple ethnic groups - White and Black Caribbean
• Mixed or multiple ethnic groups - White and Black African
• Mixed or multiple ethnic groups - White and Asian
• Mixed or multiple ethnic groups - Any other Mixed or multiple ethnic background
• White - English, Welsh, Scottish, Northern Irish or British
• White - Irish
• White - Gypsy or Irish Traveller
• White - Roma
• White - Any other White background
• Other ethnic group - Arab
• Other ethnic group - Any other ethnic group
• No data - Refused
• No data - Undeclared or Not known
Data type: Defined list
Further information
Data descriptor
of
from
Source
Event
CLD Guidance, release 1 (February 2023)
Events that occur within the reporting period should be recorded for service users and carers. This includes:
• Requests for support completed during the reporting period. This is the point at which the initial contact outcome has been finalised.
• Assessments and reviews completed during the reporting period. Open or ongoing requests, assessments or reviews should not be included. Assessments started before the reporting period start date and completed during the reporting period should be included.
• Services that are active during the reporting period. This includes services that are active at the end of the reporting period, as well as those that started or ended during the reporting period. Service events are the only event type in CLD that can be open and ongoing with an event start date but no event end date.
Cancelled events should be excluded from the collection. For CLD submissions, a cancelled event is an event where the process was not completed. Events that were erroneously recorded but didn’t happen are considered cancelled. Requests, assessments and reviews should be considered cancelled where they are halted prior to completion for an unexpected reason such as an admission to hospital. A service should only be considered cancelled if it is terminated prior to any support being provided. Suspended services should be included as ongoing until the service is confirmed as being no longer provided.
These events represent four key steps in the social care pathway.
We recognise that different local authorities operate different front-door services and commission services in different ways. We also recognise that terminology, IT case management systems and recording practices vary. The guiding principle when mapping events to one of the four event types (detailed in the Event Type section below) is that it should most closely match the activity. Local authority data leads should use their professional judgement to decide this, alongside the guidance. Annex C sets out the rationale for how local authorities should record events if they operate the ‘three conversations’ model or similar strengths-based approaches.
We also recognise that individuals may have multiple care needs involving multiple referrals to different services and interrupted by unplanned events, such as a hospital admission. In these situations, selecting a single Event Outcome for reporting purposes is not straightforward. Guidance on this is given under the Event Outcome field with worked examples provided in Annex D.
For carer services, local authorities have a range of arrangements with third party organisations to provide assessments and services. In some instances, the local authority funded sector partners will be able to provide records containing the relevant details of carers they assess and support. Subject to appropriate data sharing agreements, these can be used to submit carers information within CLD. In other instances, the funding may be more general (block grant funded) and the local authority would have no expectation that the funded sector partner could provide carer records. In such cases, we would not expect an authority to submit records for this group. At the time of submission, the comments box on the Data Landing Portal (DLP) should be used to describe this context.
Data descriptor
of
from
Source
Event description
CLD Guidance, release 1 (February 2023)
This free text field is intended as an option for local authorities to provide additional context or clarification to aid in the interpretation of records. Descriptions of events will vary between local authorities.
This field should be used to record initial conversations since this will enable them to be identified when local authorities operate a three conversations model. Annex C provides further detail and Annex D provides worked examples.
Some examples of local definitions may include, but are not limited to:
Request
Adult Contact: New case
Hospital contact
Children’s referral to ASC
Initial conversation
Assessment
Contact screening assessment
Care Act Eligibility assessment
3 stage Care Act Eligibility assessment
Initial conversation
Service
Residential Care HD1
Home support: Domestic
Equipment: Bariatric Bed with Integrated Hoist
Review
6-week review
Annual review
Unscheduled Review
Data type: Text
Data descriptor
of
from
Source
Event end date
CLD Guidance, release 1 (February 2023)
Event End Date should be entered for all events completed or ended during the collection period (this can be left blank for services events as they are the only events that can be ongoing in CLD submissions). An Event End Date is required for all request, assessment and review events. In the case of events such as assessments and reviews which require managerial sign off to confirm outcomes, the date of this sign off should be used as the Event End Date.
It is feasible to have an event start and event end on the same date, for example a request for support received by a contact centre which is started and completed over the phone. In this case, please record the same date for both the event start date and end date.
Data type: date format dd/mm/yyyy (no time stamp)
Data descriptor
of
from
Source
Event outcome
CLD Guidance, release 1 (February 2023)
Event Outcome is the intended action once an event is completed. This either indicates that no further action (‘NFA’) is planned by the local authority in relation to the adult’s care needs or describes the planned next step.
Event Outcome should be known at the point when the event is completed, with no further processing required by the local authority. Unlike SALT, there is no requirement for local authorities to track cases and derive the sequel to each event. With CLD, sequels will be derived centrally from the sequence of events using agreed transformations.
Event Outcome will be used to provide a default sequel only where this cannot be derived from subsequent events in CLD. The ‘NFA’ outcomes are particularly important. Other outcomes help identify the sequence of events.
‘NFA’ means that the local authority does not plan any further actions in relation to the adult’s needs for care or support, with the expectation that there would be no subsequent events recorded in CLD.
The 'NFA - Self-funded client (inc. 12wk disregard)' should be used as the Event Outcome for a terminated permanent residential or nursing care service following a 12-week property disregard after which the service user became a self-funder.
Financial assessments are the only events that should not have an Event Outcome recorded, since they are carried out alongside the assessment and provision of care services.
Open and ongoing services should have the Event Outcome 'Provision of service' to indicate that the service was continuing at the end of the reporting period.
For reviews, when there is a change in package, the Event Outcome should be ‘Progress to Support Planning / Services’. When there is no change in package, the Event Outcome should be ‘No change in package’.
When multiple Event Outcomes apply, a single outcome should be selected from the list below, choosing the first which applies according to the order in which they appear, from top to bottom.
The defined list of Event Outcomes is:
• Progress to Reablement/ST-Max
• Progress to Assessment
• Admitted to Hospital
• Progress to Re-assessment / Unplanned Review
• Progress to Support Planning / Services
• Progress to End of Life Care
• No change in package
• Service ended as planned
• Progress to financial assessment
• Provision of service
• NFA - Deceased
• NFA - Moved to another LA
• NFA - 100% NHS-funded care
• NFA - Information & Advice / Signposting only
• NFA - Self-funded client (inc. 12wk disregard)
• NFA - Support declined
• NFA - Support ended – other reason
• NFA - No services offered - other reason
• NFA- Other
Data type: defined list
Data descriptor
of
from
Source
Event reference
CLD Guidance, release 1 (February 2023)
The Event Reference facilitates identifying events for data quality reporting and is a mechanism to ensure that event rows are not duplicated. Each event should have a unique Event Reference with repeated submissions of the same event having the same reference.
It is anticipated that some local authority case management systems will automatically create a unique reference for events when the record is created. Where the Event Reference is automated, it can be included as the Event Reference.
Where an automated unique Event Reference is not available, local authorities should consider a local method to derive an Event Reference, using other data items in the collection such as matching dates, event types and/or a combination of other data fields.
It should be noted though that a derived reference should not include any person identifiable information such as DOB, Postcode, name etc, where the Event Reference could be used to identify individuals.
Data type: Integer or Alpha-numeric
Data descriptor
of
from
Source
Event start date
CLD Guidance, release 1 (February 2023)
Required for all event rows, this will be the date the event started, which may differ from the date the event was recorded on the case management system. For example, where a client received home care from the 20 March, but the service was recorded and authorised on the 22 March, the start date recorded in CLD should be 20 March.
Data type: date format dd/mm/yyyy (no time stamp)
Data descriptor
of
from
Source
Event type
CLD Guidance, release 1 (February 2023)
The four event types for CLD that apply for service users and carers are: requests, assessments, services and reviews.
Request: A request event identifies when a contact is made requesting adult social care support, for themselves or a 3rd party, from the local authority. This covers requests from new and existing clients including service users and carers.
Assessment: An assessment event should be recorded for all Care Act eligibility assessments, including carers assessments. Other types of assessment should also be recorded, including occupational therapy assessments for equipment and financial assessments conducted by the local authority. This excludes DoLS, safeguarding, mental capacity and Mental Health Act assessments.
Service: A service event should be recorded for any adult social care support commissioned by or involving the local authority, provided to service users or carers.
Review: A review event should be an examination of an existing care and support plan. This may be planned as a regular event or initiated by a change in circumstance.
Initial conversations in a three conversations model should be recorded as requests if they are the first contact, or as assessments if they are recorded separately (see Annex C).
The defined list of event types is:
• Request
• Assessment
• Service
• Review
Data type: Defined list
Data descriptor
of
from
Source
Events (Reviews only)
CLD Guidance, release 1 (February 2023)
A review event should be an examination of an existing care and support plan. This may be planned as a regular event or initiated by a change in circumstance.
Where it is found that there is a change of circumstance that affects a care and support plan, this may trigger a re-assessment of needs, carer’s assessment, short term assessment and/or financial assessment. These should be recorded as separate assessment events in addition to the review event.
Where a review and re-assessment is recorded on case management systems as a single combined event, this should be submitted as a review.
A review cannot be completed without input from the client and/or their representative. The outcome must include offering of new or continuation of current services as well as services being ceased. Closing case files or checking that services have stopped following the death of a client does not count as a review for CLD purposes. Similarly, reviews that are not completed before a client dies (or for any other reason) should not be included.
SALT reviews (LTS002b) are limited to reviews of those who are in receipt of long-term support. All reviews of client and/or carer needs should be recorded as review events in CLD. This covers people receiving long-term support (LTS002), those receiving short-term services (STS002) and unpaid carers (LTS003). Inclusion of all reviews in CLD will allow existing metrics to be derived, as well as collecting additional new insight on local authority adult social care activity.
Review events should only be submitted if they are completed. Reviews that are terminated before completion should not be submitted. For example, closing case files following the death of a client does not count as a review for CLD purposes.
Data descriptor
of
from
Source
Events (assessments only)
CLD Guidance, release 1 (February 2023)
Assessments are a key event in the social care process and has therefore been included in the CLD specification to capture the full care pathway.
At minimum, local authorities should provide records for assessment events that involve a full assessment of eligibility for services under the Care Act 2014. Local authorities should also provide records for other types of assessment, including occupational therapy assessments of equipment including assistive technology and adaptations and reablement assessments. Where no eligibility assessment is made, the Assessment Type should be recorded as a Short Term Assessment.
DoLS, safeguarding, mental capacity and Mental Health Act assessments should not be included in CLD.
As set out under the ‘Events (All)’ section, carer assessments should be included where these records are available.
Data descriptor
of
from
Source
Events (carers only)
CLD Guidance, release 1 (February 2023)
Person level data is required for carers in direct contact with the local authority during the reporting period – for a request, an assessment, a service or a review. This can include direct contact with a commissioned provider.
This section of the specification is designed to collect additional information specifically relating to carers and to enable linkage to records for cared-for people in the submitted data.
These fields should be completed for event rows that have the Client Type ‘Carer’ or ‘Carer known by association’.
Carers who are not the direct subject of events still need to be included in the dataset if the carer is linked to a client and has been actively involved in the assessment and care management process for the person they care for. This is the only instance where a row of data will show the person details for the carer and the linked service user Person IDs only, but not contain any event details. This record will be used for linking purposes only using Client type of ‘Carer known by association’. Worked examples of how to use ‘Carer known by association’ are provided in Annex D.
Carer-specific events should represent the direct interactions of local authorities and carers in respect of their needs as a carer i.e. a carers request, a carers assessment, carer review or ‘carer support: direct to carer’
If an adult carer is also interacting with the local authority as a service user, and are aged 18 or older, events related to their needs as a service user should be recorded using Client Type ‘service user’.
Where either a carer is receiving local authority support, but the cared for person is not, the details of the latter should not be shared, since there is no purpose / consent to hold and share this data.
Data descriptor
of
from
Source
Events (requests only)
CLD Guidance, release 1 (February 2023)
This field records requests for support (contacts from people or their representatives, or someone acting on their behalf) being made in relation to the provision of adult social care services, excepting ‘casual contacts’ where no client details are captured. In a change from SALT, this should be for existing as well as new clients, and for carers.
Where the first contact is also an initial conversation in a multi-stage assessment approach, this should be recorded as a request. See Annex C for details.
Data descriptor
of
from
Source
Events (services only)
CLD Guidance, release 1 (February 2023)
Service records should be submitted for people who are either:
• funded fully or jointly by the local authority
• full cost clients whose care is organised by the local authority under S18(3)
In these groups, everyone currently in receipt of services should have a service event record submitted as part of CLD. This covers active or ongoing services that started before the reporting period as well as those starting or ending during the reporting period.
In relation to services that have been suspended during the period, these should be treated as open with the client 'on the books' for the purposes of the return. If it is decided that the suspended service will be terminated, for example following an extended stay in hospital where needs are likely to change, or the care home is unable to keep the bed available, this should be recorded as an ended service with an end date matching the suspension date and a new service recorded as appropriate.
Only services provided by adult social services in respect of needs as an adult should be included in reporting. Services for young people who have turned 18 whose service transitioned to adult social care before they turned 18 should be included. Services provided by children’s social services during the transition should be excluded.
Packages of care can be reported either using a single service line or as multiple service lines, depending on how the care is locally commissioned and recorded. This will be accounted for at the analysis stage.
Definition
of
from
Source
Explicit consent
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Explicit consent requires a very clear and specific statement of consent. It is unmistakable. It can be given in writing or verbally, or conveyed through another form of communication such as signing. Whilst explicit consent is not required for direct care purposes, it may still be required to comply with other statutory requirements (such as the Gender Recognition Act 2004).
Definition
of
from
Source
Explicit consent
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Explicit consent requires a very clear and specific statement of consent. It is unmistakable. It can be given in writing or verbally, or conveyed through another form of communication such as signing. Whilst explicit consent is not required for direct care purposes, it may still be required to comply with other statutory requirements (such as the Gender Recognition Act 2004).
Data descriptor
of
from
Source
First name
CLD Guidance, release 1 (February 2023)
This information is important as it will facilitate the tracing of NHS numbers by the DSCRO (AGEM CSU) where they are missing or incorrect. Wherever possible, this should be the name used on official records.
Data type: Text
Data descriptor
of
from
Source
GP practice code
CLD Guidance, release 1 (February 2023)
GP Practice Code can be provided where it is available.
Data type: Text
Data descriptor
of
from
Source
GP practice name
CLD Guidance, release 1 (February 2023)
GP Practice Name can be provided where it is available.
Data type: Text
Data descriptor
of
from
Source
Gender
CLD Guidance, release 1 (February 2023)
Gender is defined as the gender the individual considers themselves to be. ‘Other’ has been added for clients who do not identify as male or female. ‘Unknown’ should be used where the person's gender has not been recorded.
• Female
• Male
• Other
• Unknown
Data type: Defined list
Definition
of
from
Source
Genetic data
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Personal data relating to the inherited or acquired genetic characteristics of a natural person which give unique information about physiology or the health of that natural person and which result, in particular, from an analysis of a biological sample from the natural person in question.
Value set
for
from
Source
Has unpaid carer
CLD Guidance, release 1 (February 2023)
Formerly ‘Has Informal Carer’. The wording has been changed to better represent therole of unpaid carers and align with terminology used in the sector . This should not affect the data submitted.
Whether the person receives support from an unpaid carer gives a holistic view of a person's support package. This is closely aligned to the Carer Status from SALT LTS001b table 2 but is expected for all event types in the dataset, not just where long term support services are provided to the client. This variable is also relevant for unpaid carers, to determine if they themselves are being cared for.
It is recognised that people may have multiple unpaid carers actively providing support. For the purposes of the CLD collection, a value of 'Yes' would indicate that there is at least one unpaid carer known of. ‘Unknown’ should be used where this information is not recorded.
• Yes
• No
• Unknown
Data type: Defined list
Value set
for
from
Source
Hearing impairment
CLD Guidance, release 1 (February 2023)
Hearing impairment can be reported for all people who are in scope of the CLD collection. If the person has a sensory registration, use the registration category to reflect the severity of the impairment, otherwise use the ‘severity unknown’ option when any recorded health condition uses the old EQ-CL wording. ‘Unknown’ should be used where the person’s hearing status has not been recorded.
An impairment can also be recorded if this is on the local record and not formally registered.
• Deaf with speech
• Deaf without speech
• Hard of hearing
• No hearing impairment
• Hearing impairment - severity unknown
• Unknown
Data type: Defined list
Definition
of
from
Source
Home-based intermediate care
NHS England Intermediate Care Programme (based on NICE NG74)
What and where? - Community-based services that provide assessment and interventions to people in their own homes (or care homes). For most people interventions last up to 6 weeks.
Why? - Aims to prevent unnecessary hospital admissions, support faster recovery from illness, support timely discharge from hospital, and maximise independent living.
Who? - Delivered by multidisciplinary teams but most commonly by healthcare professionals or care staff (in care homes).
Definition
of
from
Source
Human Rights Act 1998
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
The Human Rights Act 1998 sets out the fundamental rights and freedoms that everyone in the UK is entitled to. It incorporates the rights set out in the European Convention on Human Rights (ECHR) into domestic British law.
Definition
of
from
Source
Impairment
NHS England: Accessible Information Standard v1.1 - Implementation guidance
The disability charity Scope defines impairment as, “long-term limitation of a person’s physical, mental or sensory function.”
Further information
Definition
of
from
Source
Implied consent
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Only applies in the context of care provided to individuals (or actions that lead to the provision of care). Implied consent refers to instances where the consent of the individual patient can be implied, without them having to make any positive indication of their wishes, such as giving their verbal agreement for a specific aspect of sharing information to proceed.
An example of implied consent would be doctors and nurses sharing CPI during handovers without asking for the patient’s consent. Alternatively, a physiotherapist may access the record of a patient who has already accepted a referral before a face-to-face consultation.
To use implied consent, organisations must inform patients or service users of how their information may be used when providing services. Typically, this could be included in patient or service user information leaflets about a service, or as transparency information on their website about how the organisation uses personal and health and care data.
Definition
of
from
Source
Implied consent
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Only applies in the context of care provided to individuals (or actions that lead to the provision of care). Implied consent refers to instances where the consent of the individual patient can be implied, without them having to make any positive indication of their wishes, such as giving their verbal agreement for a specific aspect of sharing information to proceed.
An example of implied consent would be doctors and nurses sharing CPI during handovers without asking for the patient’s consent. Alternatively, a physiotherapist may access the record of a patient who has already accepted a referral before a face-to-face consultation.
To use implied consent, organisations must inform patients or service users of how their information may be used when providing services. Typically, this could be included in patient or service user information leaflets about a service, or as transparency information on their website about how the organisation uses personal and health and care data.
Definition
of
from
Source
Individual care
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Has the same meaning as Direct Care. Both definitions below are taken from “Information: To Share or not to Share? The IG Review 2013”.
1. A clinical, social or public health activity concerned with the prevention, investigation and treatment of illness and the alleviation of suffering of individuals. It includes supporting individuals’ ability to function and improve their participation in life and society. It includes the assurance of safe and high quality care and treatment through local audit, the management of untoward or adverse incidents, person satisfaction including measurement of outcomes undertaken by one or more registered and regulated health or social care professionals and their team with whom the individual has a legitimate relationship for their care.
2. Direct care is provided by health and social care staff working in care teams, which may include doctors, nurses and a wide range of staff on regulated professional registers, including social workers. Relevant information should be shared with them when they have a legitimate relationship with the patient or service user.
Further information
Definition
of
from
Source
Information Commissioner's Office
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
The UK’s independent authority set up to uphold information rights in the public interest, promoting openness by public bodies and data privacy for individuals.
Definition
of
from
Source
Information asset register
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
A register of what information you hold. It is a way of helping understand any risks so that an organisation can protect the information.
Other resources
about
from
Source
Information governance
NHS England
Information Governance Framework for Integrated Health and Care: Shared Care Records
Published 7 September 2021
Executive summary
The aim of Shared Care Records (ShCR) is to help local organisations move from today's position, where each health and care organisation holds separate records for the individuals they care for, to one where an individual’s record is shared across the health and care system. This will help health and care professionals to use information safely and securely as the people they care for move between different parts of the NHS and social care. It will also enable patients and service users to access their record irrespective of where they receive care.
ShCR was formerly known as the Local Health and Care Record (LHCR) programme. For the ShCR (LHCR programme), exemplar areas were identified. Other ShCR geographies are being onboarded to ensure full national coverage. The exemplar areas are:
OneLondon
Yorkshire and Humber
Thames Valley and Surrey
Greater Manchester
Wessex
The Information Governance (IG) Framework is intended for IG professionals. It has been developed to provide a structured approach to ensure ShCRs meet their legal obligations. This includes when they are planning, preparing and delivering data sharing.
It is based on a model where controllership continues to remain local. Local agreements will be in place to set out what data is shared and who can access it in a safe, secure and appropriate manner. This approach recognises the variance in how data is captured and represented in local systems.
ShCRs will initially focus on individual care. This is covered in two journeys:
Journey 1: Sharing personal or confidential patient information (CPI) between health and social care bodies within a ShCR for the individual care of patients or service users.
Journey 2: Sharing personal or CPI between health and social care bodies across geographical boundaries for the individual care of patients or service users.
The following requirements are essential for IG compliance and good practice and need to be considered for both journeys.
Each ShCR should:
- have a consistent approach to IG policies, processes and systems to ensure good practice
- identify the flows of data, and at each point in the process to determine who the controllers and/or processors are
- identify and understand the legal basis for processing data for every function including ensuring transparency about purpose and process, supporting good practice, and promoting public engagement
- manage access controls and records management
- consider patient and service user objections to processing
- adhere to current published guidance on cyber security for health and care
- ensure that any relevant due diligence checks are carried out where processors or sub-processors are involved
- document the decision-making process to demonstrate accountability
Each requirement has a set of checkpoints. Every ShCR will need to gain satisfactory assurance on each checkpoint before proceeding with data sharing across the ShCR member organisations. Where a ShCR already has a shared local health and care record in place, they should use the checkpoints to assure themselves. Also have an independent assurance panel to ensure that they are compliant.
ShCRs must meet the requirements set out in this IG Framework. Other areas, that are delivering integrated care, are not presently mandated to use the IG Framework. They are however encouraged to do so to help adopt good practice and comply with the law.
Thank you to colleagues from the ShCR (LHCR) IG Steering Group, ShCR (LHCR) IG Leads, critical friends and stakeholders who have helped in the development of this document.
Definition
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Information governance
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
The term used to describe how organisations and individuals manage and handle data within the health and social care system in England. In practical terms, IG is about managing and sharing information appropriately. There is a body of legislation that protects personal information and any information shared inappropriately could mean a fine for the organisation or even prison for an individual.
Other resources
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Information sharing
NHS England Transformation Directorate
The aim of Shared Care Records (ShCR) is to help local organisations move from today's position, where each health and care organisation holds separate records for the individuals they care for, to one where an individual’s record is shared across the health and care system. This will help health and care professionals to use information safely and securely as the people they care for move between different parts of the NHS and social care. It will also enable patients and service users to access their record irrespective of where they receive care.
The Information Governance (IG) Framework is intended for IG professionals. It has been developed to provide a structured approach to ensure ShCRs meet their legal obligations. This includes when they are planning, preparing and delivering data sharing.
Definition
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Intermediate care
NHS England Intermediate Care Programme
Intermediate care services are provided to people, usually older people, after leaving hospital or when they are at risk of being sent to hospital. Intermediate care:
- Helps people to avoid going into hospital or residential care unnecessarily
- Helps people to be as independent as possible after a stay in hospital
- Can be provided in different places (e.g. community hospital, care home or in people�s own homes)
[Source: NHS Benchmarking (2015) in Intermediate Care � SCIE Highlights No 1 � July 2017]
Intermediate care is a set of services and interventions organised through health and social care organisations to support people proactively in their own homes, or in a community bed-based facilities, and provide structured support on discharge from hospital. It comprises short-term, multidisciplinary services that provide support to people who have been in hospital or who are at risk of hospital admission. Intermediate care helps people to recover or rehabilitate at home and is underpinned by the Home First principle that the vast majority of people recover best at home. Intermediate care helps people to be as independent as possible after a stay in hospital, or a crisis in the community, and helps people to avoid people going into hospital or residential care unnecessarily. Intermediate care services are sometimes known as �step down� or �step up� services and can be provided in different places (e.g., people�s own home, care home, community hospital).
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Interpreter
NHS England: Accessible Information Standard v1.1 - Implementation guidance
A person able to transfer meaning from one spoken or signed language into another signed or spoken language.
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Joint controller agreement
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Joint controllers are not required to have a contract but must have a transparent arrangement that sets out your agreed roles and responsibilities for complying with the UK GDPR.
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Joint controllers or joint controllership
NHS England Transformation Directorate: Information Governance Framework for Integrated Health and Care: Shared Care Records (Sep 2021)
Where two or more controllers jointly determine the purposes and means of processing. Joint controllers are not required to have a contract but must have a transparent arrangement that sets out agreed roles and responsibilities for complying with the UK GDPR.
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