Scope

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Broad scope:  Platforms intended to notify multiple organisations or services of an event, fact, circumstance or need through a single process.​

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"Platform" includes both digital platforms/portals and non-digital tools and methodologies for recording and sharing information.

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"Event, fact, circumstance or need" includes

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• Episodic notifications, i.e. an event such as a change of address or circumstance, or a birth or death. These tend to be matters of fact, and are designed to allow organisations to update their records and/or take any necessary actions in response.

• Relational notifications, e.g. about communication or reasonable adjustment needs, which seek to change the way the organisation interacts with someone on an ongoing basis.  Within this group are two sub-categories:

• Notifications which are sent to multiple recipients at once;

• Notifications which the person can choose to share with recipients when they need to interact with them.

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"Multiple organisations or services" includes

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• Multiple government departments/agencies

• Multiple services within a single public sector organisation (local council, NHS etc) - recognising that, for better or worse, these organisations operate a host of disconnected systems

• Multiple service providers (banks, utilities etc) - but excluding notifications to multiple brands within the same parent organisation 

• Multiple sectors/service types (if any examples can be found).

 

We have also made the following assumptions:

 

• There is a need for a way for people to “tell us once” about an event, fact, circumstance or need, and for this to work with all the organisations and services they deal with.

• The primary focus of the need is to share actionable support needs. These include, but are not limited to, the reasonable adjustments someone may require under the Equality Act 2010. One of those reasonable adjustments may indeed be the ability to share their information once, and be confident it will reach all the organisations and services it needs to.

• The content of the notification is defined as originating with the person, but it may be shared by a trusted third party on that person's behalf. 

• Content which originates with a professional (e.g. a clinical diagnosis, case notes or account records) is excluded, unless the person chooses to include that information to support what they're saying. 

• The lawful basis of processing, in respect of the information being shared, is likely to be consent (explicit consent in the case of Special Category data as defined in Art. 9 (1) of the UK-GDPR).  If information is subsequently processed under any other lawful basis, (e.g. Vital Interests, Substantial Public Interest, Health and Social Care), this would need to be made extremely clear, particularly as consent can be withdrawn at any time.

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Assessment criteria

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Platforms are being evaluated against the principles set out by Think Local Act Personal (TLAP) in their report Data for People and the Ten principles for designing vulnerable consumer data-sharing programmes published by the Money Advice Trust and whatweneed.support.

 

They will also be assessed against the following functional criteria:

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• Purpose 

  • What is the platform there to achieve?

  • Is it designed for episodic or relational notifications (as defined above)?

  • What information does the platform let you share?

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• Statutory requirements 

  • Are you required by law to make the notification?

  • ​Does the event, fact or circumstance need official validation? (eg notification of death)

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• Choice and control

  • 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?

  • How much choice and control are you given?

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• Functionality

  • How do you identify yourself/the person you're making the notification about?  

  • Does the platform allow for structured data?​

  • Does the platform allow for free text?

  • Does the platform allow you to nominate a carer or proxy to act on your behalf?  Does it allow your carer/proxy to do what you need them to do?

  • Can you see when the notification has been received by recipients? Are you told what will happen as a result?

  • Can you change or update the notification if circumstances change? How can you be confident that the update reaches those who need it?

  • Does the platform let you see the information the organisations hold about you? Can you validate, update and/or correct it?
     

• Reach

  • How many organisations can be expected to see your notification, and therefore act on it?

  • In terms of what you need to happen, how certain can you be that the right organisations will see and act on it?

  • In particular, is the tool restricted to one area of your experience, e.g. financial services/utilities or health/social care? 

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• Language and user experience

  • How accessible is the language used in the platform? Is the language loaded, insensitive or offputting? Is there scope for misunderstanding?

  • Does the platform force you to reveal your medical conditions/diagnoses, or can you simply state your support needs without identifying the conditions that give rise to them? 

  • How good is the overall user experience of the online portal (if any), given that many users of the platform may not be "digitally native"?

  • How good is the overall user experience for those who can't access the platform online?

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• Outcomes

  • 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?

  • 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?

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See also

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• What people need - includes a number of reports, campaigns and other information which set out why people need to Tell Us Once

• Prevention of Future Deaths reports, particularly those which cite not listening to the person or their family/carer - provides further evidence about the consequences of the problem. There's also useful evidence about the technical side of the problem, for example, under Interoperability issues and access to data.

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Known Tell us Once platforms to be investigated (some may be out of scope of the final report)