Work in progress - findings and recommendations to be confirmed/validated
"Tell us Once": Overall observations
During the research a number of ideas have emerged about what a genuine "Tell us Once" service might look like. It would need to meet the needs of people who might use it; the principles set out by Think Local Act Personal and the Money Advice Trust; and the operational needs of the organisations and services receiving information from it.
It would also need to act across sectoral boundaries; someone wanting to share communication needs with their GP should also be able to share them with their bank, utility companies, landlord, and any other service they need to deal with, on either a one-off or an ongoing basis. A service that doesn't support this cannot truly be said to enable people to "tell us once".
This also reflects the fact that, for many people, the act of sharing their information is an exhausting one; the first reasonable adjustment they need may be to explain everything just once.
There is some excellent practice in many of the platforms investigated to date, but none fully meets these criteria. Beginning with the assumption that people want to be able to "tell us once" - that there is a demand for a universal approach - we are suggesting a number of design principles for how "Tell us Once 2.0" might be delivered. (Note that, in the spirit of the first entry, this is just intended to start a discussion; the entire process needs to be co-produced.)
The solution may not be a single "Tell us Once" platform or service; it may be a data standard which applies across all platforms. In either case, the following suggestions set out what might be needed.
(At the foot of this page are my initial thoughts about the scenarios when someone may need to share information, who receives it, and what they need to do in response.)
What good could look like
First principles
Co-production | The whole approach MUST be fully co-produced with the people who may use it, including seldom heard groups. |
Ownership | The approach, and the systems and/or data standards which deliver it, shouldn't be owned by any one of the sectors which receive information, though they should all be involved in its development. |
Functional requirements
(Click the theme heading for further detail)
1
An approach which...
1.1 What is the platform there to achieve?
1.2 Is the platform designed for episodic or relational communication?
1.3 Is the platform designed to share your information once with all recipients (Share once) or to capture your information once and let you share it when needed (Tell once)?
1.4 What information does the platform let you share?
Enables you to share whatever information you need to, from a change of address to your Reasonable Adjustment needs, with any organisation or service you deal with.
Lets you share the relational impact of an episodic event - for example, a change of address might be the result of bereavement or a relationship ending.
2
An approach which...
2.1 Are you required by law to make the notification?
2.2 Does the event, fact or circumstance need official validation? (e.g. notification of death)
Automatically incorporates any official validation needed for the information you’re sharing.
3
An approach which...
3.1 How transparent is the platform about where the information goes and what is done with it? Is information put to any secondary purpose, and if so, how clearly is that purpose spelt out?
3.2 How much choice and control are you given over this?
Provides full transparency, choice and control over who will have access to data and how they will use it.
Offers the option to provide “layered” information, with specific detail for organisations that have a genuine reason to use it for the person’s benefit, or for use in specific situations such as emergencies – with the confidence that different levels of detail will only be available to the organisations/services that need them.
4
An approach which...
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?
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.
5
An approach which...
5.1 Is the tool restricted to one sector/area of your experience, e.g. financial services/utilities or health/social care, or does it operate across sectors?
5.2 Does your information reach the right people/services/contact points within the organisations that receive it?
5.3 Does the platform let you share your information proactively when you come into contact with a new service/organisation?
Is genuinely universal, so you can share the information you need/want to share with any organisation/service you come into contact with.
This includes organisations and services which have an ongoing relationship with you, but ideally the platform should also let you share information proactively when you have contact with a new organisation or service – ideally without the recipient having to subscribe to a service. This new contact may happen at a stressful time, so this capability would be particularly valuable.
6
An approach which...
6.1 How accessible is the language used in the platform? Is the language loaded, insensitive or offputting? Is there scope for misunderstanding?
6.2 Does the platform require you to share your medical conditions or diagnoses in order to share your actionable support needs?
6.3 How good is the online user experience, given that many users of the platform may not be "digitally native"?
6.4 How good is the user experience for people who can't (or choose not to) go online to share their information?
Uses “gloriously ordinary language” – everyday, inclusive, non-judgmental language rather than jargon – in every aspect of its communication to the people who need to use it.
Allows people to share their actionable support needs without asking intrusive or obstructive questions about medical conditions or diagnoses, meeting the spirit and letter of the Equality Act Code of Practice.
Offers a user-friendly, intuitive online portal for people to share their information, with an equally carefully designed offline alternative for those who can’t or choose not to go online.
7
An approach which...
7.1 Does the platform let you state what you want/need to happen as a result of sharing your information, specifically including reasonable adjustments and other actionable support needs? Do you feel confident that your needs will be met as a result of using the platform?
7.2 How trustworthy does the platform/process feel? How is this trust created, both for the person and for recipients? How can you be confident that there won't be unexpected and unintended negative consequences of making the notification?
Lets you share your actionable support needs clearly, in enough detail but without asking for too much, and which gives you trust and confidence that those needs will be met by any organisation or service you need to interact with.
Other points to consider
Reasonable Adjustment needs | There's an urgent need to develop a comprehensive but usable value set for the reasonable adjustments people may need. This should be needs-based, not condition-based. |
In case of emergency | Could the approach include carry cards which give basic information about reasonable adjustment needs, perhaps with a QR code to access essential emergency information? |
Interoperability | A universal TuO service/data standard would need to offer maximum interoperability with the systems that might receive and process information from it. This includes NHS, social care and housing systems; customer management systems (CMSs) in banks, utility companies, local authorities, Government departments and others; and potentially other recipient systems as yet unidentified. This suggests that the TuO service/standard needs to capture structured data that can align with multiple data standards, and needs to export this structured data with a descriptor attached that is independent of any sectoral data standard. |