Questionnaires - 'About Me' [DRAFT]

Background

It is known that there are many varieties of care plan in use across the city, and that these are used by a multitude of organisations from all sectors. Whilst it is not thought to be feasible (or desirable) to condense these into a single plan, it is recognised that there is common information within them which could be aligned to deliver better outcomes and greater efficiencies. This common information is often used to inform the care planning process and is often related to ‘About Me’ types of data items which are very important for personalised care.

The ‘Common Components of Care’ project has identified as a priority the need to ensure that care planning conversations are informed by what matters to a person. Currently information relating to what matters to a person is not effectively captured and shared between organisations involved in an individual’s care. Although some staff involved in the care of an individual can see and share some aspects of this information digitally via the Leeds Care Record, others cannot, more typically those from the independent sector or VCSE. This results in discrepancies and people being repeatedly asked the same questions. Furthermore, the person receiving care is often unable to view and update this information.

To support more person-centred systems of care, phase 1 of the Componentisation of Care project aims to enable a person to manage and own this information and empower them to act upon it. Additionally, the project aims to reduce the division between primary, secondary, community, voluntary and social care organisations by establishing standardisation of data sets and enabling this information to be shared between organisations.

Although it is felt that there is common information within care plans beyond the “What’s Important to Me?” statements, phase 1 data scope will be used within a technical ‘proof of concept’ which aims to address current challenges and barriers to sharing common data sets between organisations and across forms and systems.

Problem statement

Care is planned in different ways across the city in a variety of settings. Personalised ‘About Me’ type questions for patients are captured in different systems, using different questions. These are not shared effectively between care settings. This means that people are asked the same thing multiple times and professionals waste time repeating similar conversations. Patients may feel disengaged as a result and frustrated by the lack of joined-up care planning.

Context of use

Settings and roles

Collaborative Care and Support Plan (CCSP): Incorporate WMTM questions within template re-design and include the WMTM questions as an initial prompt within the patient letter with the test results. Incorporate WMTM and guidance into Long Term Conditions Training.
Frailty / Welfare Check Template: Re-design of Welfare Check Template to address placement of the WMTM questions. Re-‘roll out’ of the template to Care-Coordinators within PNC’s.
Advanced Care Planning / Planning Ahead Template: Incorporate WMTM questions into the new ‘Planning Ahead’ template which will see EPaCCs and ReSPECT combined into one template for use within LCH, Primary Care and Hospices.
Cancer Care Support Service (CCSS) / S1 Template: Incorporate WMTM questions into the CCSS S1 Template.
Social Prescribing / Wellbeing Plan: Incorporate WMTM questions into a new template (Wellbeing Plan) to be used by linking Leads’ Social Prescribers

Summary Flow

To do - Visualisation of data from capture to presentation. [image links inline]

Template capture
Observation data from clinical/community system
GP Connect / Community adapter interface
FHIR mapping in SoS
UI presentation
Clinician roles and workflows

Target Systems

Support the use of existing SystmOne functionality to share information (captured in templates) across community and primary care settings.
Implement the required functionality (based on both technical and functional requirements) to capture the answers to the WMTM questions in Helm (Person Held Record) and share with Yorkshire Humber Care Record (YHCR) / System of Systems (SoS).
Implement solution to process information captured in templates in SystmOne Community units via the YHCR/SoS (TPP community adaptor). This will involve mapping data with appropriate transformations to relevant questionnaire FHIR resources for sharing via YHCR / SoS.
Implement solution to process information captured in templates in SystmOne and EMIS GP systems via the YHCR/SoS (GP Connect adaptor). This will involve mapping data with appropriate transformations to relevant questionnaire FHIR resources for sharing via YHCR / SoS.
Develop interface (based on both technical and functional requirements) to display the answers to WMTM questions in Helm (Person Held Record) that have been authored by professionals in other settings and subsequently shared via YHCR / SoS.
Develop interface to both capture and display answers to WMTM questions in the YHCR Care Portal that have been authored by professionals in other settings and subsequently shared via YHCR / SoS. This will be based on work completed in Helm as it shares the same architecture.
Support the development of the user interface within the Leeds Care Record (LCR) in order to present WMTM answers derived via YHCR / SoS.

User journeys

[ADD CONSENT POLICY]

Theme	Questionnaire Sharing
Initiative	HQ001 - Helm questionnaires shared with professionals
User Journey Summary	Patient/homelessness peer capture of ‘What Matters to Me’ questions in Helm for sharing with professional users via YHCR Portal (and any other SoS connected consumers).
Information provider roles	Patient, citizen, homelessness peer advocate
Information consumer roles	GP, practice nurse, care coordinator, secondary care clinician
Supporting Work	Alignment to PRSB standards, NHSI/E co-design groups for personalised care.
Alignments / Support	ICS priorities for personalised care and inclusion agenda (Bevan)

FHIR profiles and resource mapping

Mandatory and Must Support Data Elements

The following data-elements are mandatory (i.e data MUST be present) or must be supported if the data is present in the sending system (Must Support definition). They are presented below in a simple human-readable explanation. Profile specific guidance and examples are provided as well. The Formal Profile Definition below provides the formal summary, definitions, and terminology requirements.

Each Questionnaire must have:

a narrative summary of the questionnaire
a status
an intent
a category code of “”
a patient

Examples

Example 1
Example 2
Example 3

UI design guidance

To do:

Wireframes of web and mobile views
UI control elements - Getting input, navigation, data display / content structuring
Advanced UI elements - History, provenance, summary/detail

Clinical terminology and coding

Acceptance criteria

Supporting information

PRSB Implementation Guidance

The ‘About Me’ information section supports the sharing of information that the individual thinks is important to share with people caring for and supporting them. This could include information about their needs, preferences, concerns and wishes.

The About me section should be prominently displayed in a shared care record as it is important information about the person relevant to all care and support providers. This information may be available in multimedia formats e.g. jpeg, mp3 etc. These documents are likely to follow a variety of formats but should be transferred in their entirety.

Care will need to be taken in local implementations to differentiate between information in the About me section and things like Advance Directives and preferences and wishes expressed in other care plans such as end of life plans. Likewise reference to any other legal documentation e.g. lasting power of attorney in the About Me should be checked against the electronic record.

Professionals using the information in the About Me section should be reminded that the information is entered by the individual from their perspective and therefore any clinical information contained in the About Me e.g. their allergies or their conditions could be compared with other information in the electronic record.

If there are discrepancies between the About Me information and the information in the electronic record, following discussion between the clinician and individual to reconcile the differences, both the individual and the clinician should (where appropriate) amend their records to align them.

As the About Me section allows for free text and multimedia information it is recommended the individual (or the person supporting them to write the information) is prompted to consider:

that the most important information comes first in any sub-category
avoiding adding too much information as important information may be buried within text making it difficult for the professionals to easily digest the information and use it to personalise care
when multimedia is effective and ensure that videos are kept short
that they do not need to put information about themselves in every element (sub-category of the About Me section) only where they feel they have information they want to share

The elements (sub-categories) enable the individual to record whatever is most important to them and therefore are broad and few in number. Local implementers could decide to structure the information within the sub-categories further but it is not mandatory.

https://theprsb.org/wp-content/uploads/2020/10/About-Me-Implementation-Guidance-Version1.0.pdf