Some current data sharing initiatives
There are several initiatives already in place or under development which respond to a greater or lesser extent to people's needs. Some of these focus on information the person has provided specifically to be shared; others focus on information generated by professionals. Examples include:
Published by
Professional Records Standards Body (PRSB)
Sector
Health and social care
Information created by
The Person
Arguably the most innovative data standard there is, "About Me" was created by the Professional Records Standards Body (PRSB) to enable people to record and share the information they want health and care professionals to be aware of.
The standard has seven sections which help to provide an overall structure with setting out the information and prioritising the most important information first. Only relevant sections need to be completed, and keeping it prioritised and concise is important for busy professionals reading it. The seven sections are:
What is most important to me
People who are important to me
How I communicate and how to communicate with me
My wellness
Please do and please do not
How and when to support me
Also worth knowing about me
It can be completed with just text, or with videos/multimedia files and has implementation guidance for both users and those developing systems.
It should be owned by the person, who can update it as and when required. Ideally, it will be shared via a link so professionals access the master version, not old versions copied into local systems.
The PRSB has reiterated that "About Me" needs to be retained as a single document and not split into sections when shared. It wouldn't therefore be appropriate to copy "How I communicate and how to communicate with me" and paste it into AIS. "About Me" would flag the need for an AIS record to be created and the two could then be shared across systems in parallel as appropriate.
Published by
NHS England
Sector
Health and social care
Information created by
The Person
The Accessible Information Standard (AIS) aims to make sure that people who have a disability, impairment or sensory loss get appropriate information and communication support from NHS and adult social care services.
It places five obligations on health and social care providers:
to ask people about their communication and reasonable adjustment needs
to record that information in a structured way
to display it prominently on their systems, so any member of staff accessing the person's record will be made aware of it
with the person's consent, to share it with other health and care providers
to act on it in the way they communicate with the person.
The NHS England website states that "The standard applies to service providers across the NHS and adult social care system, and effective implementation will require such organisations to make changes to policy, procedure, human behaviour and, where applicable, electronic systems." However, there doesn't appear to be any clear and consistent way for the standard to be enforced or monitored.
It's also unclear whether the standard applies to adult social care services in local authorities (except where they provide a service directly, e.g. by managing a residential home.) The standard does refer to "Commissioners of... publicly-funded adult social care", who should monitor it through contracts, frameworks and performance management initiatives, but there's no reference to the direct services a local authority provides, such as information and advice, assessment, brokerage, review, and in many cases specific services like Technology Enhanced Living.
Healthwatch is currently running a campaign entitled "Your Care Your Way" to improve more effective implementation of the AIS.
Published by
Pritesh Mistry, Fellow in Digital Technologies at The King's Fund
Sector
Health and social care
Information created by
The Person, Professionals
"The single patient record is a part of the English government’s vision to modernise healthcare. While it's a simple concept, having a patient’s complete health information into one accessible platform and connected to the NHS App, the realisation is a complex challenge involving technology, governance, trust, policy, and purpose."
The single patient record doesn't exist yet; this link is to an excellent article by Pritesh Mistry, Fellow in Digital Technologies at The King's Fund, which describes both the ambition and many of the technical, legal, cultural and ethical issues which need to be unravelled before it can become a reality.
This article was published on 29 May 2025 and includes a great many parallels with the arguments put forward on this website.
Published by
Alzheimer's Society
Sector
Health and social care
Information created by
The Person
'This is me' is a simple leaflet for anyone receiving professional care who is living with dementia or experiencing delirium or other communication difficulties.
'This is me' can be used to record details about a person who can't easily share information about themselves. For example, it can be used to record:
a person’s cultural and family background
important events, people and places from their life
their preferences and routines.
The leaflet can be used in any setting – at home, in hospital, in respite care or in a care home.
'This is me' helps health and social care professionals better understand who the person really is, which can help them deliver care that is tailored to the person's needs.
It can therefore help to reduce distress for people with dementia and their carers. It can also help to overcome problems with communication, and prevent more serious conditions such as malnutrition and dehydration.
Published by
Money Advice Trust and Money Advice Liaison Group
Sector
Financial services and utilities
Information created by
The Person
The Money Advice Trust and Money Advice Liaison Group (MALG), have launched a new series of guides to help firms meet data protection regulation and support customers in vulnerable circumstances. The guides are designed to help creditors and advisers understand the overlap between GDPR and vulnerability, and strike the right balance between human experience and data.
Authored by Money Advice Trust Vulnerability Lead Consultant Chris Fitch, data protection expert Rob Bell and Colin Trend from the Money Advice Trust's Consultancy team, the guidance aims to help data protection teams, staff working on vulnerability policy and operational leads to work together to address practical challenges related to GDPR and vulnerability.
Our Overview Guide summarises the practical actions that firms can take to manage disclosures of vulnerability. It provides a bird’s-eye overview of the options and actions open to firms. This is complemented by the detail and advice in our three Technical Guides.
Technical Guide 1 is about the fundamentals – it explains what vulnerability means in practice rather than just the definition, and why disclosures of vulnerability are key moments for fairness, trust, and transparency.
Technical Guide 2 walks firms through the choice of which lawful processing basis to use with vulnerability disclosures. This brings together a legal understanding of GDPR, alongside insight into the practical needs of vulnerable customers.
Technical Guide 3 examines how to record data (flags, support codes, account notes, and secondary indicators), how to use data to support customers, and how to encourage further disclosures of vulnerability.
Published by
Utility companies
Sector
Utilities
Information created by
The Person
Maintained by utility companies – gas, water, electricity, telephone – to identify properties where people are particularly dependent on their services.
Work is under way, led by OFGEM (?), to investigate the possibility of a single Priority Services Register covering all utility companies.
There is a (somewhat critical) guide to PSRs on the Vulnerability Registration Service website.
Published by
Integrated Care Boards
Sector
Health and social care
Information created by
Professionals
Over and above the SCR, the ShCR includes records from elsewhere in the NHS and from social care. Data sharing agreements will be in place, but their approach will vary despite efforts to standardise them.
Operated sub-regionally by Integrated Care Systems (ICSs).
Published by
Joint Emergency Services Group Wales (JESG)
Sector
Emergency services and social care
Information created by
Professionals
JIGSO (‘jigsaw’ in Welsh) established data links between Adult Social Services and local emergency services teams in mid and west Wales. This enabled fire and rescue services to carry out more effective home safety checks, particularly for the most vulnerable. In Phase 2 JIGSO incorporated data from other sources such as the Priority Services Register from Dwr Cymru (Welsh Water).
Published by
Stockport MBC (Local Digital funded)
Sector
Children's social care
Information created by
Professionals
Stockport MBC has created a Family Context Tool to enable its children's social workers to access all the information held about a family or household through a single portal. Crucially, it shows which other services are involved with the family and whom to contact.
The tool is estimated to have saved staff 18,402 hours per year - the equivalent of 9.4 FTE social workers - during the assessment of new referrals.
It is noteworthy that the tool explicitly states that the lawful basis for its use is Legal Obligation or Public Task, not Consent (see Appropriate Usage guide) – a useful example of clarity in communicating with families and staff alike.
Published by
iStand UK (Local Digital funded)
Sector
Local authority services
Information created by
Professionals
SAVVI aims to define - and encourage the adoption of - sector-wide data standards that will help local councils, and their partners, to identify vulnerable people, and target appropriate support to those in greatest need.
Published by
Policy in Practice
Sector
Health, social care, education, fire, police, other agencies with a statutory safeguarding responsibility
Information created by
Professionals
Clever software that helps safeguarding professionals securely share data and make more informed decisions to protect vulnerable residents.
Published by
Vulnerability Registration Service Ltd
Sector
"...may include lenders, utility providers, gaming companies, debt collection agencies, insurers, local authorities and charities"
Information created by
The Person
People can register with VRS and declare various "vulnerabilities". The term is not defined, but VRS does offer a list of "vulnerability flags"
It will then be shared with "various organisations so that they are aware of your vulnerability if they are dealing with you. These organisations may include for example lenders, utility providers, gaming companies, debt collection agencies, insurers, local authorities and charities."
The current list of recipients shows 58 organisations across the above sectors.
Published by
Sopra Steria
Sector
Financial services
"A digital triage tool that makes it easy for customers to share their needs and be connected to relevant support from you and other organisations. It helps you reduce the likelihood of harm today, and signpost local and national options to help customers build longer term emotional and financial resilience in the future."
Support Point appears to be an alternative to the Experian Support Hub and Vulnerability Registration Service for notifying financial institutions about vulnerabilities.
It references the FCA Guidance for firms on the fair treatment of vulnerable customers, and emphasises its simplicity and ease of use for customers, including "empathetic, straightforward language".
However, it appears to be marketed to individual organisations as a tool they can deploy for their own customers - there's no specific reference to data being shared with other organisations, so it isn't really a TUO tool.
It also seems to be geared to helping customers
Published by
London Office of Technology and Innovation
Sector
Health and social care
Information created by
The Person
Plan My Care is a template developed by the London Office of Technology and Innovation (LOTI) to help individuals plan for their future care and support needs. Like About Me, it consists of a series of prompts which can help to capture the things the individual sees as most important to their life.
Some of the initiatives listed above are well established in principle. There is a national ShCR Local Authority Network which shares good practice among authorities and (by extension) ICSs. Others are still at pilot or proof of concept stage, or are operating only in limited areas.
With 317 local authorities in England, whatever one council is trying to do, another council is probably already doing it!
This holds true for…
-
System integrations
-
Data sharing agreements
-
Data Protection Impact Assessments
-
Effective use of data standards
-
GDPR training
-
Joining up data across health, care, housing and other essential services
-
Linking records via the UPRN