Work in progress - ratings and comments are still to be finalised
About Me
1.1 Stated purpose
"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.
1.2 Episodic or relational
2.1 Statutory notification
2.2 Info validated by
Sector
4.1 Personal identifier used
Online portal
Offline alternative
1.3 Data included
Relational
No
Health and social care
NHS number
No
Yes
"Please call me..."
Communication preferences
Reasonable adjustments
Emergency contacts and when to use them
The roles they play in my life
The roles I want/need them to play
Formal and informal proxies
Please talk to... about...
Please don't talk to... about...
Advance Decision to Refuse Treatment
Things that matter to me in life - my hopes and fears; my wishes for the present and future; what makes a good day
The effect my health conditions/disabilities have on my day-to-day life;
Strengths
Arguably the most imaginative data standard there is. About Me is entirely free text based - it's designed to give a picture of a person and the things that make them tick.
The person's voice - their language and the way they express themselves - is at the heart of About Me. The standard encourages the use of multiple file formats , e.g. audio and video, which literally enable's the person's voice to be heard more clearly, and which makes it even more accessible to peope who may struggle with the written word.
The prompts under each heading are a useful set of reminders about what might be included, and are likely to capture important information which the person might not think to include if presented with a blank sheet of paper.
Weaknesses
The information available through "About Me" is potentially limitless, but the standard hasn't been designed to structure any of the content. PRSB's response was that About Me can identify the need for structured data capture to be undertaken through a separate platform such as the Accessible Information Standard.
Although "About Me" is a mandated component of the PRSB's Core Information Standard, in practice there is extremely limited awareness and use of it. Among the system suppliers which do offer it, we have yet to find any evidence that it is being routinely or systematically shared beyond the host system.
There is no digital platform to allow people to create an "About Me" record, contributing to the lack of awareness and take-up. The standard might benefit from multiple portals focusing on specific accessibility needs.
Further information
Overall functional rating
3. Transparency, choice and control
3.1 Transparency
Purpose is transparent, but no privacy notice to confirm this
3.2 Choice and control
Standard says that consent will be sought, but nothing explicit on how consent is provided/applied and whether there can be exclusions
4. Functionality
4.2 Structured data
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.
4.4 Carer role
"People who are important to me" provides a specific prompt for a proxy to be nominated if the person wishes
4.5 Acknowledgement of receipt
No provision made
4.6 Updates
The standard anticipates that people should be able to update their About Me record, but there's no specific platform or mechanism to permit this
4.7 Access to records
n/a - other mechanisms exist which may or may not give access to NHS and care data
5. Reach
5.1 Multi-sector acceptance
PRSB have designed this for health and social care and don't believe it's appropriate to be shared beyond these functions. (Question: this info has come from the person, so why shouldn't they be able to share it more widely if they choose?)
5.2 Recipients within orgs/services
Systems may have capacity to store information (it's included in the Core Information Standard), but aren't routinely designed to highlight its existence to front line staff.
5.3 Proactive sharing
The data standard doesn't exclude this, but there's no platform to enable it
6. Language and user experience
6.1 Language
Specifically designed to let the person express their needs and wishes in their own language/voice. Implies that any professional reading it should think carefully enough about the language used to make sure they understand what is meant - may involve suspending professional judgement and thinking like a human.
Words to watch
6.2 Conditions vs actionable support
Focus is entirely on the person's needs or wishes, with no requirement to share diagnoses or conditions
6.3 Online UX
No portal
6.4 Offline UX
Based on its design and intent, About Me ought to offer a very high standard of user experience, rooted in conversation and connection rather than box-ticking. UX will be heavily influenced by the way it's undertaken and the person/professional (if any) who's having that conversation with the person.
7. Outcomes
7.1 Actionable support needs
Excellent, but would benefit from a parallel record (e.g. AIS) to provide a structured/coded record of ASNs. This could be triggered by something shared under "How I communicate and how to communicate with me".
7.2 Trustworthiness
Trustworthy based on design and intent.
Think Local Act Personal: Data for People
Ratings against the 15 Principles
Overall
TLAP 2
TLAP 3
TLAP 4
TLAP 5
TLAP 6
TLAP 7
TLAP 8
TLAP 9
TLAP 10
TLAP 11
TLAP 12
TLAP 14
Money Advice Trust
Ratings against the 10 principles for designing vulnerable consumer data-sharing programmes
Overall
MAT 1
MAT 2
MAT 3
MAT 4
MAT 5
MAT 6
MAT 7
MAT 8
MAT 10-