Status: DRAFT
- These requirements are a work in progress and have not been agreed, as such no development activity should be undertaken until they have been finalised
- There could be disruption as the content is modified and update updated regularly, e.g. with links not working..
- Please contact the core project team if you need any assistance.
Professional Record Standards Body (PRSB) - About me standard v1.2
About Me
The expectation is that this information would be written or recorded by an individual (or someone supporting them) in an electronic record for that individual. How the information is recorded and added to the electronic record is for local determination.
The information in the About Me section should be prominent and one of the first sections viewed in a health and care record as it includes important information about the person relevant to all care and support providers. Ideally this information is also available in a multimedia format e.g., video, particularly when a person has difficulties expressing themselves.
The information in the About Me section should sit alongside other information entered by health and social care professionals such as medications and allergies to enable the information to be cross-checked.
Local implementations will need to define how and where the information is displayed.
It should be possible for the individual to update the information as it changes or when they need to record new information. A record of the changes that were made and when they were made should be captured.
It is recommended that About Me information is reviewed and updated at key transition points for example for children and young people with Education, Health and Care (EHC) plans when transitioning from primary to secondary school, moving onto college and whenever their home circumstances change (for example moving into supported living or residential care). The transition process from children’s social care to adult’s social care is also a recommended time for reviewing and updating About Me information. For adults, it should be reviewed and updated at planned reviews or when requested by the individual
It is the intention that everyone should be able to record About Me information however local implementers may want to identify population groups for which the ability to record and share this type of information would deliver most benefit and start with those groups for example children and young people accessing children and adolescent mental health services (CAMHS), children and young people with an EHC plan, older people in care homes, people living with long term conditions and individuals receiving support from children’s and adult’s social care.
The information in the About Me section is intended to be used to support direct care and not to assess an individual’s right to receive care or support.
What it is
- a section within the Core Information Standard and transfer of care standards which is designed for sharing information that the person (or somebody acting on their behalf) considers important to share about themselves with others caring for or supporting them for the purposes of direct care, to enable the best, personalised care and support to be provided
- aimed at capturing an individual’s needs, preferences and wishes for how they receive care and support in a person-centred approach. It could also include information on the individual’s strengths to provide a basis for building upon personal and community assets to enable self-care where possible
- aimed at capturing holistic information about the individual, not just what people caring for and supporting the individual need to know when someone is unwell (or in an emergency) but what they are able to do and enjoy on a typical day
- divided into sub-categories of information to help individuals to determine what information to share and to help those providing care and support to the individual to easily locate the information they need
- designed to be generic and apply to everyone, from those who have complex care and support needs to those who rarely require care and/or support. This could include, for example, older people, people with mental health conditions, people with learning disabilities, people with physical impairments and people with long-term conditions etc.
What it is not:
- intended to be used for determining an individual’s right to access social care or health services
- a person-held record, therefore, does not include any information recorded by professionals in an electronic patient record such as medications, problems, examination findings and investigation results. In a shared care record the About Me (information from the person themselves) would sit alongside clinical and social care information recorded by professionals about the person
- a care or support plan. Individuals may have an end-of-life care plan, plans for management of specific conditions or situations (e.g., an asthma management plan or a behaviour support plan) and these would sit alongside the About Me information in a shared care record
- a go-to section for legal information such as Deprivation of Liberty Safeguards, Lasting Power of Attorney, Nearest relative or Next of Kin
- a prescriptive definition of what must be included. The About Me section enables an individual to reflect their unique position. They can include whatever information they choose in an About Me section and they can choose not to share any information at all
- a definition of who should be able to see the information in the About Me section for an individual (local implementers will need to determine this based on the legal framework and NHS England’s Information Governance Framework and Role-Based Access Control framework)
- a definition of how the information in the About Me section should be presented to professionals. What is presented and how much information (history) and how it is viewed and accessed should be defined locally
- a definition of a form or system for capturing information in the About Me section from an individual
- a definition of how and where individuals can record information in the About Me section, how it is captured and displayed in clinical systems and shared records, how it is kept up-to-date and how multiple versions of information in the About Me section are managed (e.g., About Me records originating in different settings)
PRSB Logical Data Model
From a logical data modelling perspective, there are 2 key concepts that would be required to support the About Me
- A ‘Template’ that defines the structure and format of the about me, this would initially mirror the PRSB standard, but could be version controlled to support changes over time as the standard evolves.
- ‘Completed Responses’ detailing the answers for a patient in each of the about me sections. Ideally, there would only ever be one current/about me ‘about me’ for a patient (at least with the ICS), however, it should be possible to see previous iterations between each addition/alteration.
The PRSB have defined a number of questions/sections that make up an About Me:
AboutMe | Element | ||
What is most important to me | S | 0..1 | |
What is most important to meMarkdown | markdown | ||
What is most important to meAttachment | Attachment | ||
People who are important to me | S | 0..1 | |
People who are important to meMarkdown | markdown | ||
People who are important to meAttachment | Attachment | ||
How I communicate and how to communicate with me | S | 0..1 | |
How I communicate and how to communicate with meMarkdown | markdown | ||
How I communicate and how to communicate with meAttachment | Attachment | ||
My wellness | S | 0..1 | |
My wellnessMarkdown | markdown | ||
My wellnessAttachment | Attachment | ||
How and when to support me | S | 0..1 | |
How and when to support meMarkdown | markdown | ||
How and when to support meAttachment | Attachment | ||
Please do and please don't | S | 0..1 | |
Please do and please don'tMarkdown | markdown | ||
Please do and please don'tAttachment | Attachment | ||
Also worth knowing about me | S | 0..1 | |
Also worth knowing about meMarkdown | markdown | ||
Also worth knowing about meAttachment | Attachment | ||
Date | S | 1..1 | dateTime |
Supported to write this by | S | 0..1 | string |
About Me Coding
The following SNOMED codes have been created for the About Me and the respective sections/questions:
ConceptId | Term |
---|---|
1515851000000101 | About me (record artifact) |
1515861000000103 | About me - what is most important to me (record artifact) |
1515871000000105 | About me - people who are important to me (record artifact) |
1515881000000107 | About me - how I communicate and how to communicate with me (record artifact) |
1515891000000109 | About me - my wellness (record artifact) |
1515911000000107 | About me - how and when to support me (record artifact) |
1515901000000105 | About me - please do and please do not (record artifact) |
1515921000000101 | About me - also worth knowing about me (record artifact) |
About Me Technical Data Standards
FHIR Questionnaire / QuestionnaireResponse
The Questionnaire resource would represent an organised collection of questions intended to solicit information from patients, providers or other individuals involved in the healthcare domain. They may be simple flat lists of questions or can be hierarchically organized in groups and sub-groups, each containing questions. The Questionnaire defines the questions to be asked, how they are ordered and grouped, any intervening instructional text and what the constraints are on the allowed answers.
The results of a Questionnaire are communicated using the QuestionnaireResponse resource, which provides a complete or partial list of answers to a set of questions filled when responding to a questionnaire.
The example About Me (text only) form below is automatically generated using this FHIR Questionnaire and the open souce LHC-Forms widget.
The populated resposne from a Patient would be in the form of a QuestionnaireResponse. An example of a completed About Me (based on the above template) can be seen here
If required a Questionnaire could support both a text narrative and multiple attachments per section of the about me - for example the user could upload multiple images of what they look like when they are in pain.
FHIR DocumentReference
In addition to a comlpleted QuestionnaireRespsonse, the presence/location of an About Me could also be shared using a DocumentReference (e.g. with type = http://snomed.info/sct|1515851000000101
). The DocumenentReference could have multiple attachments, e.g. one for the FHIR Resource, and one to a Binary representing the same information for consumenrs who cannot handle more complex FHIR Resources (e.g. with the National Record Locator Service,the content is currently limited to PDFs)