You are in the Data Zone
Note: These use cases are a first draft, and in some cases are still under initial development. Whilst based on countless conversations with professionals and members of the public, they haven't yet been validated. Comments on the use cases are particularly welcome.
Use case:
Welfare benefits support
Welfare benefits teams (in the council or voluntary sector) will help residents to identify and claim benefits they are entitled to, and where necessary will help them appeal against a DWP decision. The information shown here would help them to do this, but all too often they have little or no access to it.
As
a person needing to claim benefits or challenge a benefits decision
I need
whoever is helping me to have access to all the information they need
so that
they can get my claim/challenge right, using the best possible evidence, even if I've lost some of the paperwork they need
As
a person needing to claim benefits or challenge a benefits decision
I need
someone to help me navigate the system (which, let's face it, is designed to be hostile to me)
so that
I can receive the benefits I need and not have a mental breakdown in the process
As
a welfare benefits advisor
I need
access to information that would support someone's benefits claim
so that
I can help then access all the benefits they're entitled to
Priority information
Address
A unique lifelong identifier for any addressable location, which remains consistent throughout the property’s lifecycle from planning application to demolition. A parent/child structure allows for a “parent” UPRN for an overall building and separate “child” UPRNs for units in that building – flats, office units etc. Every UPRN is classified according to a detailed classification scheme, which distinguishes (for example) residential property from commercial property and sheltered accommodation from care/nursing homes.
The UPRN is a priority dataset for almost every use case, as it's the one piece of information that (in theory) can remain consistent across any record held by any organisation.
The UPRN is included in the MODS and ASC-CoRe data standards, and will be included in release 3 of the PRSB Core Information Standard.
Identifiers
The NHS number has been mandated in law as the single identifier to be used across health and social care.
It is often (but not always) held in the local authority's adult social care case management system, but less often by care providers, and seldom in care tech systems.
Contact details
(Needs editing to remove jargon) Under the Equality Act 2010, organisations have a legal duty to make reasonable adjustments to ensure that services are as accessible to people with disabilities as they are for everybody else. This duty only applies to people’s disabilities, but there is also a need to record other communication needs, e.g. the requirement for an interpreter and/or translations of written material if someone does not speak or read English. The NHS has established a Reasonable Adjustments flag, with an extremely detailed SNOMED-CT value set, to capture this information. If this is already populated in NHS systems it is possible to import it using the Reasonable Adjustments Flag API – and indeed it is a duty on NHS services, under the Accessible Information Standard, to share this information across health and social care if they have recorded it. It is unclear whether the Accessible Information Standard is intended to apply to the core business of local authority adult social care. However, it would make sense to provide for it in the design of the case management system, by including the functionality to import, record, flag and share Reasonable Adjustment flags. (Import functionality might be from the NHS via the relevant API, or from another internal system such as children’s social care, housing, or a corporate customer management system.) Systematic capture of people’s reasonable adjustment needs could also provide useful business intelligence about the needs of the wider population, for example, by identifying geographic clusters of people with similar disabilities or communication needs, which could help with demand management and forecasting or targeted interventions. Feedback from local authorities and system suppliers suggests that the NHS Reasonable Adjustments value set is far too lengthy and detailed for practical purposes, and is not fit for purpose for use by frontline staff. There would be merit in developing either a sub-set of the existing SNOMED-CT value set for use in social care, or a smaller and higher level value set which could aggregate the detailed SNOMED-CT codes into a more workable solution. (If this idea is pursued it must still be possible to import records containing the full range of SNOMED-CT codes to ensure full interoperability.) Other resources such as Experian’s Support Hub and whatweneed.support also offer useful lists of reasonable adjustment needs which have been produced by, or co-produced with, people who draw on care and support.
Contact details
(Needs editing to remove jargon) Under the Equality Act 2010, organisations have a legal duty to make reasonable adjustments to ensure that services are as accessible to people with disabilities as they are for everybody else. As the duty is owed to disabled persons generally, it is an anticipatory duty which means service providers and people exercising public functions must anticipate the needs of disabled people and make appropriate reasonable adjustments. There's some anecdotal evidence of NHS staff believing that reasonable adjustments should only be recorded on the basis of a clinical diagnosis. This is at odds with the spirit of the Equality Act (if not the letter) and with practice elsewhere, where people are asked if they consider themselves disabled and if they require any reasonable adjustments. The statutory duty to make reasonable adjustments only applies to people’s disabilities. However, there is also a need to record other communication needs, e.g. the requirement for an interpreter and/or translations of written material if someone does not speak or read English. The NHS has established a Reasonable Adjustments flag, with an extremely detailed SNOMED-CT value set, to capture this information.1 If this is already populated in NHS systems it is possible to import it using the Reasonable Adjustments Flag API – and indeed it is a duty on NHS services, under the Accessible Information Standard, to share this information across health and social care if they have recorded it. It is unclear whether the Accessible Information Standard is intended to apply to the core business of local authority adult social care. However, it would make sense to provide for it in the design of the case management system, by including the functionality to import, record, flag and share Reasonable Adjustment flags. (Import functionality might be from the NHS via the relevant API, or from another internal system such as children’s social care, housing, or a corporate customer management system.) Systematic capture of people’s reasonable adjustment needs could also provide useful business intelligence about the needs of the wider population, for example, by identifying geographic clusters of people with similar disabilities or communication needs, which could help with demand management and forecasting or targeted interventions. Feedback from local authorities and system suppliers suggests that the NHS Reasonable Adjustments value set is far too lengthy and detailed for practical purposes, and is not fit for purpose for use by frontline staff. There would be merit in developing either a sub-set of the existing SNOMED-CT value set for use in social care, or a smaller and higher level value set which could aggregate the detailed SNOMED-CT codes into a more workable solution. (If this idea is pursued it must still be possible to import records containing the full range of SNOMED-CT codes to ensure full interoperability.) Other resources such as Experian’s Support Hub and whatweneed.support also offer useful lists of reasonable adjustment needs which have been produced by, or co-produced with, people who draw on care and support.
Long term health conditions and disabilities
Long-term disabilities may be held as part of a social care record, a Reasonable Adjustments record, or perhaps inferred from other data (e.g. Blue Badge holder or DWP benefits records). Other records may show short-term disabilities (e.g. recovering from surgery). Records may need to indicate a fluctuating need.
Long term health conditions and disabilities
May be held as part of a GP/social care record or a Reasonable Adjustments record.
Cognitive impairment may be the result of a learning disability or of a degenerative condition such as dementia.
NB cognitive function is not binary; records may need to indicate a fluctuating need.
Long term health conditions and disabilities
Note that mental capacity is not a binary thing - records may show that the person has had (or lacked) mental capacity at a certain time in relation to a ceertain decision, but this mustn't be used to infer a generic lack of capacity. Records of mental capacity will generally be held by health and social care systems, but may well be relevant to the person's other interactions, eg housing or welfare advice.
Useful information
Name
The preferred name field is already included in the PRSB's Core Information Standard (CIS), where it is defined as “The name by which a person wishes to be addressed. The preferred name volunteered by the person or a preferred name given by PDS that the person has asked to be called by.” It also features in About Me (How I communicate and how to communicate with me: Describe how you would like others to engage and communicate with you, including how you would like to be addressed.)
This can be an extremely important factor in someone’s wellbeing; addressing someone by their legal/formal name when they have a preferred alternative can make them feel like a statistic in a system, and places that system at odds with an agenda of personalisation. However, it is often not recorded or shared systematically, even within the NHS, despite its presence in CIS.
It is strongly recommended that the preferred name is systematically recorded as a separate field, and is populated as a matter of routine, even when the preferred name is the same as the legal name.
Care and support records
There's value in having this data available to social workers for an annual review of care and support (or for needs assessment if no care and support already in place). It might also be helpful at hospital admission (to provide additional history about how someone has been coping at home).
Care and support records
There's value in having this data available to social workers for an annual review of care and support (or for needs assessment if no care and support already in place). It might also be helpful at hospital admission (to provide additional history about how someone has been coping at home) and discharge (to ensure any hazards and risks in the home are properly mitigated).
Home environment
Important for hospital discharge, e.g. if the home is too cluttered for the person to move around easily/safely. May also suggest care and support needs and/or a safeguarding issue (hoarding) in its own right. Might be captured in a Care Act assessment, in care workers' notes, or via a Safe and Well visit from the Fire and Rescue Service - and may be helpful to a firefighter attending a 999 call.
Background
Further narrative
To be completed