"GDPR Says Yes"

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.

Separate records will be needed for multiple addresses, e.g. a temporary address, mailing address, or previous address relating to Ordinary Residence.

In a just world this would be auto-populated from OS AddressBase or a similar product. We don't live in a just world, and the number of typos in postcode records which have been manually input is perhaps one of the most obvious and visible data quality problems in this whole discussion.

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.

May include an order of preference for phone numbers, or different call types going to different numbers. Should also include any numbers used for SMS contacts. May include numbers for friends and family which the person has asked to be used - if so, should ideally state who the number belongs to.

(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.

(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.

Links to "People who are important to me"

Any record of a Lasting Power of Attorney which has been registered with the Court of Protection, including whether it is an LPA for property and affairs or personal welfare; in the latter case, whether it includes the power to make end-of-life decisions. This needs to be recorded whether or not the LPA has been put into effect.

Health professionals who have an ongoing relationship with the person. Along with their GP (or GP practice), it might include professionals who are providing ongoing treatment.

This might include paid carers, care providers and/or social workers

Current prescriptions as held on the GP record.

PFD reports highlight that records need to flag when a person should only be given limited supplies of prescription medication.

(a) Confirmed and suspected diagnoses as held on NHS records. These should be recorded in a structured way.

(b) Self-reported health conditions which have not been formally diagnosed.

Any ongoing treatment taking place. Would ideally include dates of past and upcoming appointments.

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.

Person may be registered blind/deaf, or information may be held as part of a GP/social care record, a Reasonable Adjustments record, or perhaps inferred from other data (e.g. DWP benefits records)

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.

Information may take various forms, e.g. as part of a Reasonable Adjustments record or as a flag to say the person is known to/under treatment by a MH team

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.

Important to understand if needs fluctuate

EHRC's statutory guidance on making reasonable adjustments states that it's not the condition that matters, it's the effect it has on your life. 

Any formal Care Act assessment that has been carried out, or any records that could contribute to a formal assessment, e.g. a self-assessment 

Care and support plan created by Adult Social Care or by a care provider, or any equivalent setting out care and support needs

Useful for hospital admission (notifying care providers) and discharge (what's already in place and could be reactivated?), and possibly for other purposes.

It's helpful to know what care technology is already in place, e.g. at hospital discharge when this might help identify any additional/different tech needed.

Essential when someone is moving between hospital settings; useful in other contexts too

Should be recorded as part of UPRN record

May be held in Council Tax records. Useful for Fire and Rescue or other emergency callouts.

From landlord's stock condition survey?

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.

Disabled Facilities Grant and/or occupational therapists may have records

Disabled Facilities Grant and/or occupational therapists may have records

May be held by LA planning dept as part of a planning/building regs application; by a landlord on their property management system; or even as part of an estate agent's particulars if there's been a recent sale of the property. (Note that conveyancing is also using the UPRN as its standard identifier.) Housing developments may well have a number of homes built to a standard floor plan.

Need to be aware of possible adaptations/modifications; plans can't be guaranteed to be accurate or up-to-date.

If available (and accurate!), could be useful to an OT or to a fire service attending a callout.

Many of the other headings refer to elements of risk, but this data item should cover flags like "Visit in pairs" which may be held by planning enforcement, community safety etc.

In general, property-specific hazards and risks are poorly communicated between services. One approach might be to have a hazard/risk flag, with contact details of the person/team/service who holds details, so anyone needing to visit the property can be given whatever detail they legitimately need and are entitled to.

This might be a high priority data item for the "digital firebox", as the details about the risk could be kept secure but immediately available in casses of legitimate need.

Could be held by a TEC service and/or care provider