Functionality
What we looked at
4.1 How do you identify yourself to the system?
4.2 Does the platform allow for structured data?
4.3 Does the platform allow for free text?
4.4 Does the platform allow you to nominate a carer or proxy to act on your behalf? Does it enable your carer/proxy to do what you need them to do?
4.5 Can you see when the notification has been received by recipients? Are you notified about what will happen as a result?
4.6 Can you change or update the notification if circumstances change? How can you be confident that the update reaches those who need it?
4.7 Does the platform let you see the information that receiving organisations hold about you? Can you validate, update and/or correct it?
What good could look like
An approach which...
Offers the ability to include identifiers such as your NHS number, NI number, driving licence number etc, to help share your information with the NHS and government departments.
Captures structured data (to ensure recipients can process information effectively in order to offer the right support at the right time).
Captures free text elements (to enable someone to share specific details of their needs or wishes, which might only be shared with certain recipients).
Enables you to nominate a carer or proxy to handle certain things on their behalf, including setting the boundaries on what that person can do - and ensures organisations/services will let your carer/proxy do what you want/need them to do on your behalf.
Acknowledges receipt from the organisations receiving the data, including confirmation/reassurance about the help and support they will provide as a result. This will be particularly important for people who experience anxiety or have other mental health needs.
Enables you to update your information at any time, and receive confirmation that updates have been received and will be acted on. This may be particularly important in respect of a carer/proxy nomination.
Ideally, enables you to access the records held about you by receiving organisations, including the ability to update or correct their information.
Good practice
Poor practice
Experian Support Hub and Wel-co.me for structured data. Both offer good lists of actionable support needs. Vulnerability Services Register also offers a useful list, but it’s severely compromised by the fact that support needs can only be selected if you pick the right condition, diagnosis or circumstance. •
About Me – the gold standard for free text, and also sets the benchmark for recording and sharing carer or proxy nominations. •
Experian Support Hub and Priority Services Registers for acknowledgement of receipt. •
Widespread good practice in the ability to update your information. •
The Octopus Energy Priority Support Register for access to the information already held about you, though this is part of their wider portal and isn’t specific to the PSR. •
Life Ledger for their approach to validating a proxy's ID and credentials at the outset.
About Me captures no structured data. In the PRSB’s defence, it’s not designed to. In the course of this research they suggested that if specific actionable support needs are identified, a separate platform is used to capture these in a structured way. The logical ‘twin’ is the AIS, but this isn’t widely enough used. It may be useful for the About Me guidance to make this suggestion to those using the standard.
4.2
Structured data
The gold standard for capturing what people want/need in free text or in other formats, e.g. video/audio.
PRSB has stressed that About Me needs to be captured as a whole - i.e. responses to the individual headings shouldn't be separated out and replicated elsewhere - and that it doesn't generate the information needed by (e.g.) the Accessible Information Standard, but can flag the need to complete a record like AIS which provides structured data.
There's a value set in SNOMED-CT (see Reasonable Adjustments Flag) for capturing AIS needs. It contains - wait for it - 348 options, of which 202 are for different language interpreters. Not 100% sure how practical this is.
I think there's an alternative and much smaller value set, developed by one of the ASC system suppliers.
4.3
Free text
The gold standard for capturing what people want/need in free text or in other formats, e.g. video/audio.
PRSB has stressed that About Me needs to be captured as a whole - i.e. responses to the individual headings shouldn't be separated out and replicated elsewhere - and that it doesn't generate the information needed by (e.g.) the Accessible Information Standard, but can flag the need to complete a record like AIS which provides structured data.
There's a value set in SNOMED-CT (see Reasonable Adjustments Flag) for capturing AIS needs. It contains - wait for it - 348 options, of which 202 are for different language interpreters. Not 100% sure how practical this is.
I think there's an alternative and much smaller value set, developed by one of the ASC system suppliers.