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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;

Further info

Source URL

Privacy URL

Recipients

Care provider

NHS - Community Trust

NHS - Acute Trust

NHS - GP

Local Authority (U) - Social Care

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-

Conditions/diagnoses identified
Actionable support needs identified
"What is most important to me A description of what is most important to you Emergency Information - Include any essential information that any professional in health and social care should know about the you in any situation, including emergencies. Other Information - This could include Values, Spirituality/religion, Ethnicity, Culture, Pets, Goals and aspirations, Meaningful activities including leisure activities, visiting places, sport and exercise, listening to music, employment, education, volunteering People who are important to me Details of who is important to you and why. They could be family members, carers, friends, members of staff etc. Include how you want the people important to you to be engaged and involved in your care and support in both emergency and normal situations. Include how you stay connected to the people important to you. Who should not be contacted or consulted about your care and support and why, if you wish to say How I communicate and how to communicate with me A description of how you communicate normally including any communication aids you use, for example a hearing aid. Include your preferred language of communication, if your first language is not English. Include how you would communicate when you are in pain or distress. Include how you communicate choices. Include how you give feedback or raise a concern. Include how you like to receive information Describe how you would like others to engage and communicate with you, including how you would like to be addressed. My wellness A description covering what you are able to do, how you engage with others and how you feel on a typical day through to on a day when you are unwell or really unwell. Include any causes that might result in you becoming unwell and strategies for avoiding or addressing the causes. For example, not drinking enough water could cause constipation. Include any signs that indicate you might be becoming unwell. On a bad day describe what is different about what you are able to do, how you engage with others and how you feel. Include how your everyday life is affected by any medical conditions e.g. dementia and any symptoms e.g. itchiness, cough, pain and how you manage those conditions. Include past health issues or experiences that need to be considered Include your wellbeing and lifestyle goals and aspirations Please do and please don't A description of things you want someone supporting you to do or not to do. For example, this might include: - Talk to me not to my carer, remind me to take my medication, encourage me to wash my hands regularly, explain to me what is happening and why, respond to my communication. A description of things you do not want someone supporting for you to do. For example, this might include: - Discussing or asking questions about certain topics, making assumptions about something, providing support when it is not wanted, talking to you in a certain way. How and when to support me A description of how and when you want someone caring for you to support you. This could include support needs in an emergency situation (for example taking blood) This could include support you need to maintain important routines or to carry out particular activities, for example: - Personal care routines, Eating and drinking, Bedtime routines, Taking medications, Moving and transitioning This could also include support needed with:- wearing glasses/hearing aids/false teeth etc, making informed choices or understanding dangers and risks, managing your emotions, moods and behaviours, memory or confusion. Include how your support needs change in different environments. Include any triggers that might result in you needing further support and strategies for avoiding or addressing the triggers. Include how you want the support to be provided. Also worth knowing about me A description of what is also worth knowing about you for people caring or supporting you. This could include a short history of your life (where you have worked, where you lived, important events in your life, important people in your past life). This could include a short profile of your current life:- your work / study, your aspirations, your skills, your networks, things you like e.g. particular foods, places, a football team and things you like to talk about, things you dislike This could also include any care and support preferences that have not been included elsewhere
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