Core Information Standard: Final Report

Core Information Standard: Logical Model (Excel)

Core Information Standard: Release Notes

Core Information Standard: Hazard Log

Core Information Standard: Implementation Guidance

Core Information Standard: (JSON)

Core Information Standard: Survey Report

Core Information Standard: Business Rules

Core Information Standard: Dentistry Use Case Example

Core Information Standard: Optometry Use Case Example

Core Information Standard: Clinical Safety Case (Updated)

Core Information Standard: Hazard Log (Updated)

The core information standard defines a set of information that can potentially be shared between systems in different sites and settings, among professionals and people using services.

<p>The Core Information Standard defines a set of information that may be shared between systems in different sites and settings, and with professionals and people using services. It is a key enabler of integrated, joined up care. </p>
<p>The information accessed will differ depending on who is accessing it, for what reason and the wishes of the individual receiving care. Its use will be decided locally. NHS England specifies the Core Information Standard as the standard that all shared care records should conform to. </p>
<span><b>About this standard</b></span>
<p>The Core Information Standard defines a set of information which should be common to most systems and would be a merge of records drawn from different settings. It sets out what information should be shared between organisations and geographies and could be used to populate shared care records. The expectation is that this information would be read only, at least initially. </p>
<span><b>The standard will enable health and care professionals to: </b></span>
<ul>
<li>view a consolidated medication record</li>
<li>run algorithms where there may be gaps in care</li>
<li>identify individuals at risk</li>
<li>proactively notify other health and care professionals</li>
</ul>
<p>Local implementations will need to define different ‘views’ in their shared care record of the information for different professionals and other users, including people who use services, and local use cases based on the information governance framework which will be published by NHS England.</p>
<p>These views should define what information is needed by a professional (or a person) in particular circumstances. How the information is presented to professionals and people in a shared care record will be dependent on the local systems in place, but it should be presented in such a way as to provide maximum benefit for different users (in different roles) in each given use case.</p>
<p>A view of a shared care record conformant with the Core Information Standard has been approved as appropriate and complementary for professionals working in pharmacy, optometry, dentistry, ambulance and community services. The use of a national common core information standard across all services will complement the introduction and expansion of local ICS shared care record developments.</p>
<span><b>Scope</b></span>
<p>The Core Information Standard is a thoroughly researched and validated definition of the standard, tested with citizens, patients, carers and health and social care professionals.</p>
<span><b>It defines:</b></span>
<ul>
<li>a core set of information relevant for direct care across a variety of settings.</li>
<li>a set of information that could potentially be shared with professionals depending on their role and circumstances.</li>
<li>a definition of the information professionals and people who use services have told us they want to see in a Shared Care Record.</li>
<li>an information set that is readily translatable across clinical settings e.g. mental health to accident and emergency; acute care to social care etc.</li>
<li>a blueprint for local implementations to draw from for their own local sources depending on local requirements. Local implementers may add to the core information.</li>
</ul>
<span><b>The Core Information Standard is not</b></span>
<ul>
<li>a definition of an exhaustive clinical or care record / history.</li>
<li>a definitive set of information about the person’s current status – no clinical record is this and clinical information needs to be understood by the professional reading it as such.</li>
<li>a prescriptive definition of what must be included – this will be determined ultimately by local projects and specific use cases.</li>
<li>a physical data model – FHIR profiles to support interoperability of the data between systems will be commissioned by NHS England.</li>
<li>a definition of what information professionals should be able to see or change – this will be set out in NHS England’s Information Governance Framework and Role- Based Access Control work.</li>
<li>a definition of how information should be presented to professionals – what is presented, the depth of history and how the information is viewed/accessed should be defined locally.</li>
<li>a definition of a shared care record.</li>
<li>a definition of how the content should be sourced, updated, de-duplicated and normalised i.e. the source data and its processing.</li>
<li>additions or adjustments needed to successfully implement locally which must be defined in local projects.</li>
</ul>
<span><b>How it works</b></span>
<p>The standard can be seen as a broad set of ‘flexible’ components (or sections), a sub-set of which will be relevant in different situations for different use cases. It has been designed as a generic standard, not for specific use cases. The expectation is that local health and care localities will prioritise their local use cases and build local interoperability informed by the Core Information Standard. </p>
<p>Use of the Core Information Standard in community settings: pharmacy, dentistry, optometry, ambulance and community services (PODAC): 
PRSB has validated the use of the Core Information Standard for shared care records to professionals working in pharmacy, optometry, dentistry, ambulance and community services, following widespread consultation with clinicians, people using these services and a range of PRSB stakeholders. </p>
<p>This will enable professionals working in these care settings to have access to the right information at the right time to provide clinically safe and effective care, subject to appropriate information governance controls. Using the standard in these settings should improve care and outcomes for people, and it should improve the working lives of professionals who won’t need to create workarounds or log into multiple systems to ensure they have a complete picture of a person’s current and relevant care history, before starting treatment.  <a href="https://dv8vgeb1jof7a.cloudfront.net/prsb-assets/7-Core%20information%20standard/2022-08-23%20v1.0%20Core%20Information%20Standard%20use%20in%20five%20community%20settings%20(PODAC).pdf?hsCtaTracking=6f758ff6-ffd1-4493-9993-7cbe9600a576%7C78d26824-998e-4a4c-980a-855e476d136d">View the report </a></p>


### Revision History
<table>
<thead>
<tr>
<th>Version</th>
<th>Date</th>
<th>Summary of Changes</th>
</tr>
</thead>
<tbody>
<tr>
<td>1.0</td>
<td>10/07/2019</td>
<td>Publication version</td>
</tr>
<tr>
<td>1.1</td>
<td>25/10/2019</td>
<td>Updated sections: purpose of document; pregnancy status guidance</td>
</tr>
<tr>
<td>1.2</td>
<td>19/03/2020</td>
<td>Update to guidance for ‘sex’ and ‘gender’ following a series of calls with NHS Digital.</td>
</tr>
<tr>
<td>1.4</td>
<td>19/08/2021</td>
<td>Updated due to updated to core information standard v2</td>
</tr>
</tbody>
</table>

### Reviewers
This document was reviewed by the following people:

<table>
<thead>
<tr>
<th>Reviewer name</th>
<th>Title / Responsibility</th>
</tr>
  <tr>
    <td>PRSB Assurance Committee</td>
    <td>PRSB Assurance Committee</td>
  </tr>
  <tr>
    <td>Helene Feger</td>
    <td>Director of strategy, communications and engagement, PRSB</td>
  </tr>
  <tr>
    <td>Lorraine Foley</td>
    <td>CEO, PRSB</td>
  </tr>
  <tr>
    <td>Martin Orton</td>
    <td>Director of Delivery &amp; Development, PRSB</td>
  </tr>
  <tr>
    <td>John Farenden</td>
    <td>Senior Programme Lead, Architecture Team, NHS England</td>
  </tr>
  <tr>
    <td>Gareth Thomas</td>
    <td>Greater Manchester LHCR Clinical Lead, Consultant in Intensive Care Medicine and Anaesthesia<br>Group Chief Clinical Information Officer<br>Senior Responsible Officer, Integrating Care Locally Programme</td>
  </tr>
</thead></table>

### Approved by

This document was approved by the following:

<table>
  <tbody><tr>
    <td>Name</td>
    <td>Date</td>
    <td>Version</td>
  </tr>
  <tr>
    <td>Project Board</td>
    <td>26/06/19</td>
    <td>0.1</td>
  </tr>
  <tr>
    <td>PRSB Assurance Committee</td>
    <td>11/07/19</td>
    <td>0.3</td>
  </tr>
  <tr>
    <td>Dr John Robinson, Clinical Safety Officer</td>
    <td>19/12/2019</td>
    <td>1.2</td>
  </tr>
</tbody></table>

### Glossary of Terms

<table>
  <tbody><tr>
    <td>Term / Abbreviation</td>
    <td>What it stands for</td>
  </tr>
  <tr>
    <td>A&amp;E</td>
    <td>Accident and Emergency</td>
  </tr>
  <tr>
    <td>AoMRC</td>
    <td>Academy of Medical Royal Colleges</td>
  </tr>
  <tr>
    <td>CCG</td>
    <td>Clinical Commissioning Groups</td>
  </tr>
  <tr>
    <td>CCIO</td>
    <td>Chief Clinical Information Officer</td>
  </tr>
  <tr>
    <td>CDGRS</td>
    <td>Clinical documentation and generic record standards</td>
  </tr>
  <tr>
    <td>CIO</td>
    <td>Chief Information Officer</td>
  </tr>
  <tr>
    <td>CPAG</td>
    <td>Clinical and Professional Advisory Group</td>
  </tr>
  <tr>
    <td>CRO</td>
    <td>Clinical Responsible Officer</td>
  </tr>
  <tr>
    <td>CSP</td>
    <td>Care and support plan. Used interchangeably with DCSP</td>
  </tr>
  <tr>
    <td>DCB</td>
    <td>Data Coordination Board</td>
  </tr>
  <tr>
    <td>DCSP</td>
    <td>Digital care and support plan. Used interchangeably with CSP</td>
  </tr>
  <tr>
    <td>EHR</td>
    <td>Electronic Health Record</td>
  </tr>
  <tr>
    <td>EPR</td>
    <td>Electronic Patient Record</td>
  </tr>
  <tr>
    <td>ETTF</td>
    <td>Estates and Technology Transformation Fund</td>
  </tr>
  <tr>
    <td>FHIR</td>
    <td>Fast Healthcare Interoperability Resources</td>
  </tr>
  <tr>
    <td>GP</td>
    <td>General Practitioner</td>
  </tr>
  <tr>
    <td>GPSoC</td>
    <td>GP System of Choice</td>
  </tr>
  <tr>
    <td>HCPG</td>
    <td>Health and Care Professionals Group</td>
  </tr>
  <tr>
    <td>HIG</td>
    <td>RCGP Health Informatics Group</td>
  </tr>
  <tr>
    <td>HIU</td>
    <td>Health Informatics Unit (Royal College of Physicians)</td>
  </tr>
  <tr>
    <td>HL7</td>
    <td>Health Level 7</td>
  </tr>
  <tr>
    <td>HLP</td>
    <td>Healthy London Partnership</td>
  </tr>
  <tr>
    <td>HSSF</td>
    <td>Health and Systems Support Framework</td>
  </tr>
  <tr>
    <td>ICR</td>
    <td>Integrated care record. Used interchangeably with IDCR</td>
  </tr>
  <tr>
    <td>IDCR</td>
    <td>Integrated digital care record. Used interchangeably with ICR</td>
  </tr>
  <tr>
    <td>LDR</td>
    <td>Local Digital Roadmap</td>
  </tr>
  <tr>
    <td>LHCR</td>
    <td>Local Health and Care Record</td>
  </tr>
  <tr>
    <td>Metadata</td>
    <td>A set of data that describes and gives information about other data</td>
  </tr>
  <tr>
    <td>NIB</td>
    <td>National Information Board</td>
  </tr>
  <tr>
    <td>NHS</td>
    <td>National Health Service</td>
  </tr>
  <tr>
    <td>NHSCC</td>
    <td>NHS Clinical Commissioners</td>
  </tr>
  <tr>
    <td>NHSD</td>
    <td>NHS Digital</td>
  </tr>
  <tr>
    <td>NWL</td>
    <td>North West London</td>
  </tr>
  <tr>
    <td>NWL CCGs</td>
    <td>North West London Collaboration of Clinical Commissioning Groups</td>
  </tr>
  <tr>
    <td>PID</td>
    <td>Project Initiation Document</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Professional Record Standards Body</td>
  </tr>
  <tr>
    <td>RCGP</td>
    <td>Royal College of General Practitioners</td>
  </tr>
  <tr>
    <td>RCN</td>
    <td>Royal College of Nursing</td>
  </tr>
  <tr>
    <td>RCOT</td>
    <td>Royal College of Occupational Therapists</td>
  </tr>
  <tr>
    <td>RCP</td>
    <td>Royal College of Physicians</td>
  </tr>
  <tr>
    <td>SCR</td>
    <td>Summary Care Record</td>
  </tr>
  <tr>
    <td>SNOMED-CT</td>
    <td>Systematized Nomenclature of Medicine - Clinical Terms</td>
  </tr>
  <tr>
    <td>SOCITM</td>
    <td>The Society for Information Technology Management</td>
  </tr>
  <tr>
    <td>STP</td>
    <td>Sustainability and Transformation Plan</td>
  </tr>
  <tr>
    <td>ToC</td>
    <td>Transfer of Care</td>
  </tr>
  <tr>
    <td>WSIC</td>
    <td>Whole Systems Integrated Care</td>
  </tr>
</tbody></table>

### 1.1 Background
NHS England commissioned the Professional Record Standards Body to define what information should be shared between organisations and geographies, professionals and people using services to support health and social care. It is intended that this standard will be used across the UK.

The core information standard, described in this document and related documents that can be found on the PRSB [website](website), informs the technical specifications to be commissioned by NHS England and deployed within local implementations to ensure the information defined by the standard can be shared digitally.

### 1.2 Purpose of this document

This document provides guidance to support the implementation of the core information standard for people involved in developing, deploying and using systems which exchange information pertaining to health and care. The document provides general guidance as well as guidance for each specific part of the standard.

The guidance was developed on the basis of extensive consultation described in the final project report. However, the guidance will be refined and updated regularly as it is anticipated that there will be further findings and feedback as the standard is actually implemented.

PRSB has carried out a clinical safety review in accordance with DCB0129, which is detailed in the Clinical Safety Case (Core Information Standard Clinical Safety Case Report v1.1) and accompanying Hazard log v1.1. This guidance should be used in conjunction with the CIS hazard log and CIS clinical safety case report. This is further discussed under section 2.2. Risk Mitigation.

### 1.3 Audience – who is this document for?

This guidance is intended for anyone implementing the core information standard. This will include project teams (including clinicians, other care professionals and people who use services) involved in building systems that will use the core information standard and system suppliers.

### 1.4 The Core Information Standard

The standard defines a set of information that can potentially be shared between systems in different sites and settings, with professionals and people using services. What information is accessed will differ depending on who is accessing it, for what reason and the wishes of the person the information is about. Access will be based on the national Information Governance Framework being developed by NHS England in parallel with this work.

The core information standard itself is based on the PRSB’s “Standards for the Clinical Structure and Content of Health and Care Records” (PRSB, 2018) which can be found [here](https://theprsb.org/standards/healthandcarerecords-2/).

#### 1.4.1 What it is

The core information standard is:

*   a core set of information relevant for direct care (across a variety of settings).
*   a set of information that could potentially be shared with professionals depending on their role and circumstances.
*   a definition of the information professionals and people who use services have told us they want to see in a shared record.
*   an information set that is readily translatable across clinical settings e.g. mental health to accident and emergency; acute care to social care etc.
*   a blueprint for local implementations to use to draw from for their own local sources depending on local requirements. Local implementers may add to the core information.
*   a thoroughly researched and validated definition of the core information standard tested with citizens, patients, carers and health and social care professionals.

#### 1.4.2 What it's not

*   a definition of an exhaustive clinical or care record / history.
*   a definitive set of information about the person’s current status - no clinical record is ever this and clinical information needs to be understood by the professional reading it as such.
*   a prescriptive definition of what must be included – this will be determined ultimately by local projects and specific use cases.
*   a logical or physical data model. A logical data model will be developed by NHS Digital. FHIR profiles to support interoperability of the data between systems will be commissioned by NHS England.
*   a definition of what information professionals should be able to see or change (which will be set out in NHS England’s Information Governance Framework and Role Based Access Control work).
*   a definition of how information should be presented to professionals (what is presented and how much information (history) and how it is viewed/accessed), which should be defined locally.
*   a definition of a shared care record.
*   a definition of how the content should be sourced, updated, de-duplicated and normalised i.e. the source data and its processing.
*   additions or adjustments needed to successfully implement locally which must be defined in local projects.

It is recognised that full interoperability of systems is still some way off in most clinical environments and so what is likely at least at first is a data ‘pull’ from source systems without direct write back into those systems (see clinical safety case).

#### 1.4.3 The approach to the development of the core information standard

The approach to the development of the core information standard is set out in the Final Report which can be found [here](#).

## 2 General guidance

The standard can be seen as a broad set of “flexible” components (or sections), a sub-set of which will be relevant in different situations for different use cases. It has been designed as a generic standard, not for specific use cases. The expectation is that local health and care localities will prioritise their local use cases and build local interoperability informed by the core information standard.

The sections in the standard differ in terms of how the elements they contain relate to one another. Some, for example ‘legal information’, are sets of independent ‘elements’ or data items, grouped under logical headings. Other sections, for example ‘medications and medical devices’, are sets of related elements with dependencies. A ‘record entry’ within a section is used to indicate that elements are related to one another. Some sections may also include clusters, which are groups of elements within a section that relate to one another. Clusters are similar to a record entry but occur within a single record entry and may repeat for a record entry.

Each element, cluster, record entry and section will have a statement of cardinality, whether there can be zero, one or many entries. They also have a statement of conformance - whether the item is ‘Mandatory’, ‘Required’ or ‘Optional’. An explanation of the meaning of these terms appears in the table below.

Since different components will be populated by different care settings a minimal number of sections and clusters have been defined as ‘Mandatory’. The mandatory sections are Person demographics and GP practice. This is the minimum amount of information required for a record about a person to exist. Many other sections are set to ‘Required’. However, some of the elements within a ‘Required’ section may be ‘Mandatory’. For example, if a record of a medication is shared, ‘Medication name’ is ‘Mandatory’ and must be shared.

The information model includes the following information:

Table 1 – the core information standard data structure

<table>
<thead>
<tr>
<th>Information Components</th>
<th>Model Description</th>
</tr>
</thead>
<tbody>
<tr>
<td>Section</td>
<td>A section groups together all the information related to a specific topic e.g. ‘Medications and medical devices’ and ‘Person demographics’. It is the highest level to logically group data elements that may be independent or related. For example:
<ul>
<li>‘Legal information’ includes a set of independent elements or information items, grouped in a logical section.</li>
<li>‘Medications and medical devices’ includes sets of related elements with dependencies between the elements.</li>
</ul>
</td>
</tr>
<tr>
<td>Record entry</td>
<td>A record entry within a section is used where a set of information is repeated for a particular item, and there can be multiple items. For example, for each medication there is a set of information associated with that medication. Other examples are allergies or adverse reactions and procedures.</td>
</tr>
<tr>
<td>Cluster</td>
<td>This is a set of elements put together as a group and which relate to each other; e.g. medication course details cluster which is the set of elements describing the course of the medication.</td>
</tr>
<tr>
<td>Element</td>
<td>The data item. An element can appear in one or more sections e.g. name,</td>
</tr>
  <tr>
    <td>Information model rules and instructions</td>
    <td>Explanations</td>
  </tr>
  <tr>
    <td>Description</td>
    <td>This is the description of the section, record entry, cluster or element. For an element, it describes the information that the element should contain in as plain English as possible.</td>
  </tr>
  <tr>
    <td>Cardinality</td>
    <td>Each section, record entry, cluster and element will have a statement of cardinality. This clarifies how many entries can be made i.e. zero, one or many entries. The number of records expected and allowed are displayed as:<br>0……* = zero to many record entries are allowed<br>0……1 = zero to one record entry is allowed<br>1……1 = one record is expected<br>1……* = one to many records are expected<br>For example, the ‘Medications and medical devices’ section may have zero to many medication item records in it and is displayed as 0……*.</td>
  </tr>
  <tr>
    <td>Conformance</td>
    <td>Conformance defines what information is ‘mandatory’, ‘required’ or ‘optional’ and applies to sections, record entries, clusters and elements.<br>The IT system must be developed to handle all the information elements that are defined in the Standard but not all the information is required for every individual record or information transfer.<br>The following set of rules apply to enable implementers to cater for the end users (senders and receivers) requirements:<ul><li>Mandatory – the information must be included</li><li>Required – if it exists, the information must be included</li><li>Optional – a local decision is made as to whether the information is included</li></ul><br>These rules apply at all levels and give the flexibility to allow local clinical or professional decisions on some information that is included, while being clear on what is important information to include.<br>For example, a person subject to a referral may have many assessments, but not all of these will be relevant to the referral. The conformance can be used to allow just relevant assessments to be included.<br>Assessment Section – Required – i.e. its important information you must include if you have it.<br>Record entry level – Optional – allows a local decision on what assessments are included, so only relevant ones are included based on clinical or professional needs.<br>Assessment elements – Conformance set on the normal basis of which elements for an assessment are mandatory, required or optional.<br><strong>NB:</strong> It is permitted to upgrade a conformance rule but not</td>
  </tr>
  <tr>
    <td></td>
    <td></td>
  </tr>
  <tr>
    <td>Valuesets</td>
    <td>Valuesets describe precisely how the information is recorded in the system and communicated between systems. This is required for interoperability (for information to flow between one IT system and another). The information can be text, multi-media or in a coded format. If coded it can be constrained to SNOMED CT and specific SNOMED CT reference sets, NHS Data Dictionary values or other code sets.</td>
  </tr>
</tbody></table>

### 2.1 How we expect the core information standard to be used

What is defined is a set of information which should be common to most systems and would be an amalgamation of records drawn from different settings. The expectation is that this information would be read only, at least initially. It sets out what information should be shared between organisations and geographies and could be used to populated shared care records. Local implementations will need to define different ‘views’ in their shared care record of the information for different professionals (and other users, including people who use services) and local use cases based on the information governance framework which will be published by NHS England in due course. These views should define what information is needed by a professional (or person) in particular circumstances. How the information is presented to professionals and citizens in a shared care record will be dependent on the local systems in place but it should be presented in such a way as to provide maximum benefit for different users (in different roles) in each given use case.

### 2.2 Risk Mitigation

We recommend system suppliers and health organisations apply further mitigations when incorporating the CIS in a local care record, by addressing the risks that have been flagged in the accompanying clinical safety case report and hazard log in order to reduce the risk scores to 2, or better than human transcription alone when carrying out clinical risk assessments and developing safety cases with respect to DCB0129 and DCB0160.

### 2.3 Information Governance

Sound principles of information governance and respecting the privacy of people and their information is paramount. NHS England is developing a national Information Governance framework which needs to be considered alongside the core information standard when planning implementation.

### 2.4 Context of the information

Key to the proper reading and comprehension of shared information is some understanding of the context in which the data were originally recorded. It is vital for clinical use of the data that all contextual information must be maintained and should not be lost on exchange or import of information. So, for example, where a diagnosis was made during an A&amp;E attendance, the diagnosis should be linked to that A&amp;E attendance.

The core information standard does not define all possible linkages between different components of information e.g. the diagnosis and the attendance. This will be defined in the logical data model, FHIR profiles and in the local shared care records.

However, following consultation and safety case review we arrived at the following key contextual data which need to be shared:

1.  **‘Performing Professional’** which has various attributes, name, role, specialty, organisation of the professional that, for example, performed the procedure or administered the vaccination etc. It might be that the actual professional is not known however the organisation and specialty are known and should therefore be included as contextual information.
2.  **‘Person completing record’** - which is the person that actually recorded the information and again has various attributes name, role, speciality and organisation and the date that the record was completed.
3.  **Location** - the place in which the activity took place e.g. a procedure was performed.
4.  **Date** - the date on which the activity took place e.g. then date the procedure was performed. In some cases, this would be start and end dates e.g. of child protection plans.

Note that although both ‘Performing professional’ and ‘Person completing record’ contain the element ‘Speciality’ it is recognised that this only applies to some professionals so only needs to be included where relevant.

The principle applied in the information model is that where it is important (from a professional perspective) to know who undertook the activity and who recorded the activity, ‘Performing professional’ and ‘Person completing record’ will be included in the model. For every item of information shared it is important that an audit trail is recorded (even if not explicitly stated in the information model). This is set out below.

### 2.5 Time stamp and audit trail

Each record entry will need to be time stamped from the source system with date and time recorded and the identity of the person making the record. This needs to be viewable in the records themselves where appropriate and via a full audit trail which may be viewable by the end user to enhance transparency.

### 2.6 History

The core information standard does define the requirements for history to be shared. It would be expected that relevant history of the information would be made available within a shared care record as it would provide important contextual information. Local areas would be expected to define the requirements for history.

### 2.7 Data Quality

Data quality and accuracy of coded data entry should be managed in local ‘source’ systems that will feed the shared core information.

### 2.8 Links to other records and documents

The person may have multiple detailed records or documents held on local systems, e.g. there may be a mental health record for a person at a particular trust or there may be other shared care records such as a maternity record or a healthy child record. The National Record Locator Service will, in due course, hold the links to the person’s records that reside in multiple different systems. The core information standard does not define all these possible links. It is expected that the local areas will define the requirements for accessing other records or documents, where applicable and provide access through the shared care record for authorised professionals.

### 2.9 Use of terms

The term ‘role’ has been consistently used rather than ‘designation’ throughout the standard to apply to the role the professional had in a particular activity. Role is the term used in the NHS data dictionary. We have used the term ‘organisational role’ to mean the role the professional has in the organisation they work for.

Some clusters such as referrer details have elements for one or more of specialty, team, service and department. This is to allow for all situations across health and care where different terms are required. Where possible specialty and service should be used and coded as detailed in the value set for the element.

### 2.10 Coding

The *Personalised Health and Care 2020 framework for action* ([https://www.gov.uk/government/publications/personalised-health-and-care-2020](https://www.gov.uk/government/publications/personalised-health-and-care-2020)) recommends the use of SNOMED CT and the dictionary of medicines and devices (dm+d). Local decisions need to be made about when these codes are to be used, depending on local system functionality and plans. The ambition is for SNOMED CT and dm+d to be the only clinical coding schemes in use in the NHS by 2020.

### 2.11 Accessibility

Attention must be paid in the design of user interface for viewing the core information complying with the NHS England Accessible Information Standard ([https://www.england.nhs.uk/ourwork/accessibleinfo/](https://www.england.nhs.uk/ourwork/accessibleinfo/)). This sets out the rules for accessible patient information in patient literature and clinical systems.

### 2.12 Other dependencies

The implementation of the core information standard is dependent on the following:

*   The national Information Governance Framework with nationally agreed role-based access controls and legitimate relationships being developed by NHS England.
*   The logical data model and technical messaging standards FHIR profiles (to support the transfer of information between local health and care systems).

### 3.1 Person demographics

This section contains the person’s demographic and contact details including key identifiers (e.g. name, date of birth, NHS number, address etc.
*   NHS number (or equivalent, e.g. CHI number in Scotland), is likely to be the primary identifier however existing national guidance should be followed, including how to handle patients without an NHS number, for example, overseas visitors.
* The PDS (Personal Demographics Service) should be used as the source of this information. The mandatory information in this section is person’s name, date of birth and address. There can be multiple addresses associated with a person including temporary and correspondence addresses.
* To improve the accuracy of the organ and tissue donation element systems should link directly to the organ donation register where possible.

#### 3.1.1. Sex and Gender

* The definitions used for sex and gender use the NHS data dictionary definitions to ensure interoperability with other systems. However, we recognise that the definitions used do not reflect today’s more inclusive society. We have provided feedback on this to NHS data dictionary team in NHS Digital who are actively addressing this area, and any updates to the NHS data dictionary will update our standards.
* Sex and gender data items may cause accidental disclosure of gender reassignment without consent. This is because both fields are included in the demographic model. Having both may show a difference and therefore disclose gender reassignment without consent. It is unlawful to disclose, without consent, a person’s gender reassignment with or without a gender reassignment certificate
* Section 22 of the Gender Reassignment Act 2004 makes it an offence to disclose the history of a transgender patient who has had formal gender reassignment under the Act, unless consent has been sought. The exemption of disclosure is for medical professionals involved in direct medical care, but not currently for administrative and non-medical staff. For the full Act, see https://www.legislation.gov.uk/ukpga/2004/7/contents.
* This risk can be mitigated by appropriate implementation in a shared care record; refer to the CIS clinical safety case report and hazard log. One option is to leave out the “Sex” field but the implications and potential risks of that will need to be considered. The alternative is to ensure the design of the Shared Care Record, including its Information Governance model, reduces this risk to an acceptable level as described in the clinical safety case and hazard log. A further mitigation on implementation could be to record self-expressed gender in the administrative area of systems, and record sex at birth in a separate clinical area, that can only be accessed by medical staff.

### 3.2 GP practice

This section contains details of the GP practice where the person is registered. This information would be sourced from PDS. This will include the GP practice identifier code. In situations where a person is not registered with a GP practice, the GP practice identifier would contain the appropriate code to indicate this. This section would also need to accommodate details for temporary GP where the patient is registered away from their usual place of residence

* ‘GP practice identifier’ does not need to be a displayed field. It is intended to be used to provide the GP practice details via lookup from national registers.
* Many people will not offer a named GP. Only the ‘GP practice details’ section would need to be completed in these situations
* A patient may be registered with more than one GP practice. Normally patients are registered with one practice, but may be treated as a temporary registration (e.g. whilst on holiday) by another practice. The registered GP practice can be obtained from the PDS. Suppliers should enable more than one GP practice to be recorded to accommodate temporary registration. Communications will go to the GP surgery that the patient is permanently registered with. However, sometimes a GP who is serving a patient on a temporary basis may also need to access the transfer of care communication. In this instance, both GP practices should be recorded.
*   If a patient is not registered with a GP practice, then the GP practice record entry should appear with the text "No known GP practice".

### 3.3 Alerts

This section allows for the sharing of alerts. It is unlikely that all alerts generated for a person would be shared as part of the core information standard as some alerts are dynamically generated in local systems, for example within decision support systems.

The alerts that are shared as part of the core information standard should be determined locally. They might, for example, include the presence of a medical implant or MRSA diagnosis, the fact that the person has a dangerous dog or that a person requires [reasonable adjustments](#).

It is important that alerts are managed and removed when they are no longer relevant – e.g. “the dangerous dog” alert if the dog is no longer present.

The alerts displayed to users viewing the core information may vary by use case and user’s role.

### 3.4 Legal information


This section identifies where there is legal or formal documentation relating to the care of the person. This includes Lasting Power of Attorney (LPA), Advance Decision to Refuse Treatment (ADRT), Mental Capacity Assessments (MCAs) and Mental Health Act (MHA) status.

The documentation may be available centrally as part of shared care records or held locally as part of the persons health and care records.

NB: Advance statement element is found in the End of life care section.
*   Systems should allow copies of legal documentation to be attached to the record where it would be necessary to see copies of the original documents.
*   **Mental capacity assessment**
    Mental capacity needs to be assessed at each moment where treatment decisions need to be made. Hence there should be provisions for more than one MCA to be recorded.
        *   Mental Capacity Act 2005 ([England and Wales](#))
        *   Adults with Incapacity Act 2000 ([Scotland](#))
        *   Mental Capacity Act 2016 (Northern Ireland).
    If there is a need to communicate the outcome of a mental capacity assessment it is important to record to which specific decision it relates.
*   Lasting power of attorney (LPA) should include details of one or more people who have been given power by the person when they had capacity to make decisions about their health and welfare should they lose capacity to make those decisions. To be valid, an LPA must have been registered with the Court of Protection. If life-sustaining treatment is being considered the LPA document must state specifically that the attorney has been given power to consent to or refuse life-sustaining treatment.
* A clinician should satisfy themselves that the Advance Decision to Refuse Treatment (ADRT) is valid and that the circumstances that they are dealing with are those envisaged when the person made the ADRT. A valid and applicable ADRT is legally binding. The record should include the location of the legal document.

### 3.5 Safeguarding

This section includes any concerns in relation to safeguarding and is applicable to children and adults. This section includes whether a child is looked after and indicates the presence of a Child Protection Plan or Unborn Child Protection Plan.

There may be situations where it is not advisable to share information in this section with the person to whom it relates, so local implementations may need to apply filters in these cases. Appropriate policies and technical solutions need to be in place for these situations.

Access must be controlled to this information as per SCCI1609: Child Protection - Information Sharing.

### 3.6 Individual requirements

This section allows for the sharing of any individual requirements the person may have, such as to support cognitive impairment or mobility issues. This may relate to special needs and would extend to include a record of *reasonable adjustments* which would be included in ‘Other individual requirements’.

Specific disabilities would be included in the ‘Problem list’ section however the requirements to support the disabilities (e.g. needs wheelchair access, needs large print etc.) would be included in this section.

The accessible information requirements information would be the most recent requirement rather than a history of requirements.

### 3.7 Professional contacts

This section includes current and historic details of health and care professionals, teams or organisations involved in the care of the person. Third sector organisations can be included.

The name of the person’s current care coordinator or key worker should be included here.

### 3.8 Personal contacts

This section includes the personal contacts (e.g. family, friends, relatives etc.). Comments should be used to share information such as if a particular contact should be called in an emergency etc.

### 3.9 Participation in research

This section should be used to flag participation in clinical trials or other research initiatives.

When a person is enrolled on a drug trial or intervention, the GP receives detailed information from the research sponsor, this section only requires the name of the trial / intervention and the identification code.

### 3.10 Referral details

This section includes a record of current and historic referrals. Referral details includes the service a person is being referred from. A service may not always be coded. If the service is known, and a code is available, it should be included otherwise the service should be described in free text.

### 3.11 Contacts with professionals

This section includes the details of the person’s contacts with services, their encounters. This information may need to be filtered to only display what is relevant for a particular use case and professional’s discipline. This includes outpatient appointments, home visits, hospital and outpatient attendances, out of hours GP visits, clinic appointments, social worker visits etc.

### 3.12 Admission details

This section includes all instances where a person is admitted to an inpatient setting and would include the relevant site code according to the Organisation Data Service (ODS) codes.

### 3.13 Discharge details

This section includes the summary details of the person’s discharge, but not the actual discharge content which is shared in the relevant sections such as problem list or procedures. This should include all instances of discharge from a healthcare setting with relevant ODS codes and readable names of the discharging wards or departments of organisations where available.

### 3.14 Future appointments

This section includes the details of any future appointments the person may have. This can include both health and care appointments for example a home visit from a domiciliary care worker.

The section includes both specialty and service. Specialty should be used where possible for secondary care appointments, but service can be used for example for social care where specialty doesn’t apply.

### 3.15 Vaccinations

This section includes all vaccinations including routine vaccinations of children in accordance with the Public Health England Green Book, as well as any vaccines outside the schedule and those administered abroad.

Information about vaccines should be shared in line with nationally agreed naming and utilisation conventions.

The vaccine manufacturer should be derived from GS1 code.

Sequence number for a vaccination which is given in several separate doses should be shared using SNOMED CT.

If applicable, when sharing Indication for vaccinations given as part of the Green Book either free text or SNOMED CT can be used. Example SNOMED CT is 171279008| Immunisation due (finding).

This section allows for retrospective vaccinations as reported by the person or their guardian or carer, including those given abroad, with a flag to indicate if this is the case.

Vaccinations performed by a third party should include a date or partial date of when the vaccine was administered as well as location (which could include other countries). The attributes of performing professional would allow the organisation that administered the vaccine to be shared, if known. In addition, the ‘Reported’ flag should be set to ‘Yes’ to indicate that the information was reported to the professional by the person.

### 3.16 Problem list

This section allows for all relevant diagnoses, symptoms, conditions, problems and issues.

This would include disabilities, including learning disabilities, and conditions such as autism where they fall into the above categories i.e. are diagnosed, seen as a problem by the person or are considered a condition or similar. Behavioural factors which are not formal diagnoses but could be seen as a problem for the person would also appear under this section.

‘Onset date’ should be included where available even if this is estimated in source systems.

When a diagnosis has not yet been made, the most granular clinical concept with the highest level of certainty should be displayed. This may be a problem, symptom, sign, or test result, and may evolve over time, as a conventional diagnosis is reached. For example, ‘dyspepsia’ may be the diagnosis when a patient first presents with indigestion, upgraded to ‘gastric ulcer’ when this is found at endoscopy, and ‘gastric cancer’ when biopsies reveal this.

Unconfirmed or excluded diagnoses should not be include in structured coded fields, but may be included in free text in the comments field. Thus, in the example above, gastric ulcer and gastric cancer may be in a list of differential diagnoses at presentation, but the symptom, dyspepsia, should be included in the diagnosis field. The differential diagnoses should only be included in free text in the comments field, and not in a coded diagnosis field until confirmed with confidence.

Co-morbidities’ should be shown as separate diagnoses. For example, dementia may be recorded as a primary diagnosis by a psycho-geriatrician, but as a co- morbidity where a patient is admitted for a hip replacement. Local implementations will need to define what will be prioritised according to each use case.

In some situations a diagnosis may need to be qualified by a number of attributes to give further detail. A generic approach to these attributes (such as grade; severity; distribution; behaviour; laterality etc.) has not yet been agreed. Until this is achieved it is recommended that these features are included as free text comments.

### 3.17 Procedures and therapies

*   All procedures undertaken should be included in the e-discharge summary, including:
    *   diagnostic as well as therapeutic procedures and therapies
    *   medical as well as psychological procedures and therapies (e.g. cognitive behaviour therapy; follow-up interventions as a result of physical health checks)
* procedures carried out on different days during the hospital stay.
* complementary or alternative procedures and therapies

*   Outcomes or results of procedures should be recorded in the ‘comments’ field, as well as a comment to clarify such as statement that information is partial or incomplete
*   The discharge summary should include the operation which was actually carried out, not the planned procedure, as this may have been changed. The detail should be taken from the record of the actual procedure (e.g. operating note) rather than the planned procedure (e.g. consent to treatment).
*   The procedure, anatomical site and laterality should be SNOMED CT coded wherever possible, with free text as an option where this is not possible.
*   There are specific elements for complications relating to the procedure and anaesthetic issues
*   The anaesthesia issues included could be, for example, “short neck, difficult to intubate” and the actual intubation grade or adverse reactions.
*   Clinical coders use discharge summaries for coding hospital episodes. All those deemed to be clinically important for future care should be listed. Thus venesection would not usually merit noting, unless undertaken as a therapeutic procedure for polycythaemia.
*   Whilst hospitals use OPCS codes for procedures, these cannot be used by GP practices, so should not be included in discharge summaries.

### 3.18 Social context

This section includes information about the social setting in which the person lives, such as their household, occupational, and lifestyle factors. Social circumstances includes the person’s social background, network and personal circumstances, e.g. housing, and should also include if the person is a carer. ‘Smoking status’ should be shared using SNOMED CT rather than yes or no.

### 3.19 Services and care

This section is a record of the services being provided (or that have previously been provided) to the person to support both health and social well-being. For example, it could include domiciliary care with help for washing and feeding. A start and end date for the services should also be provided where available so it is clear which services are currently being provided. The professional or organisation providing the service, along with contact details should be made available where possible (in the ‘Performing professional’ subsection).

### 3.20 Family history

This section includes information on conditions or illness in family relations relevant to the health or care of the person.

### 3.21 Investigation results

This section includes details of the investigation results. Systems should allow copies of reports, scans, images related to the investigation results to be shared with the record. It allows for results in either structured format (e.g. blood tests) or unstructured format (e.g. genetic test with the result as a report). One or other of these should be used for the result. Investigation results received from laboratories may be imported into this section.

### 3.22 Investigations requested

The section includes details of requested investigations as yet unfulfilled. This should include the reason and priority of the request.

Investigations that have concluded, and for which results are available, should be included in the investigation results section.

### 3.23 Examination findings

This section is a summary of key findings carried out as a result of an examination conducted by a healthcare professional.

Each record of an ‘Examination finding’ should include a named examination and associated findings, which may include both coded and narrative elements.

‘Observations’ includes a record of essential physiological measurements, e.g., heart rate, blood pressure, weight, height, temperature, pulse, respiratory rate, oxygen saturation.

For children, observations would also include weight, height/length and head circumference.

### 3.24 Pregnancy status

This is to share if someone is currently pregnant and the expected due date. This information should only be shared if someone is pregnant.

It seems unlikely that this information can be reliably imported from a single system and so, is likely, to be a calculated field. This is unique in this model and may be defined as a medical device, for which separate safety assessment and registration will be required. System manufacturers will need to consider this.

Any maternity management plans or birth plans related to the pregnancy would be shared in the section ‘Additional Supporting Plans’.

Obstetric and gynaecological history, specifically any complications, would be shared in the problem list (history) for professionals that need and are authorised to access to the information.

If a person is pregnant there should be an electronic shared maternity record and if professionals need, and are authorised to access it, they should be able to link to the more detailed record. This would be through the national record locator service.

### 3.25 Assessments

This section includes details of a person’s assessments allowing for unstructured, semistructured and structured outputs from the assessment. Some assessment outputs will be narrative and may come with their own particular sub-headings e.g. psychiatry (Presenting Problem, Personal/Family History, Mental State Examination etc.)

This section would also accommodate the results of any more structured assessment tools completed (e.g. screening tools/outcomes measures such as PHQ-9 or GAD-7). Numeric results of any assessments completed can also be included.

### 3.26 Formulation

This section includes the formulation. A formulation is an account, shared by a therapist and person, of the personal meaning and origins of a person’s difficulties. This is viewed in the context of multiple factors including relationships, social circumstances and life events and will indicate the most helpful way forward.

### 3.27 Risks

Risks are likely to fall into the categories set out in the core information standard – Risk to self, risk to others, etc. However, there is also a category for other risks.

There should be mechanisms in place to validate the information in this section and for it to be reviewed regularly and if applicable ended, however the peculiarity of risk factors in mental health needs to be taken into consideration i.e. the most important factor in risk is history so information here should not be archived or filtered without careful consideration.

### 3.28 Allergies and adverse reactions

Guidance on good practice recording of allergies and adverse reactions is provided by NICE (https://www.nice.org.uk/guidance/CG183/chapter/1-Recommendations).

A record should be provided of all allergic and adverse reactions relevant to the person. Coded information on causative agents is important to healthcare professionals to enable safe prescribing of medications.

When an individual is diagnosed with an allergy related condition (e.g. anaphylactic shock or urticarial skin rash) this will be entered in addition into the diagnosis field in the healthcare system and will need to be cross referenced into the problem list and prominently displayed there.

Where there is a diagnostic code for an allergy recorded in the system, the system should trigger an allergy entry. There is a significant risk to patient safety if allergies are not explicitly and prominently displayed.

Adverse reactions need to be treated in a similar manner.

Information about probability of recurrence may be included in the allergy comments element if this has been identified.

### 3.29 Medications and medical devices


The medications section allows for using structured dose and timing information that is machine readable to facilitate the reading and transfer of medications information between systems and providers of care, through the structured dose direction cluster. Technical guidance for implementing the structured dose and timing in Fast Healthcare Interoperable Resource (FHIR) messaging is available from NHS Digital https://developer.nhs.uk/apis/dose-syntax-implementation/.

The free text Dose directions description is the form of dosage direction typically used in UK GP Systems.

Dose direction duration can be derived from the start and end dates if no other information is available.

When sharing Dose duration direction, the following examples are provided to clarify definitions for two of the coded text items which appear similar. In both cases, these directions are not an absolute instruction. They are:

*   ‘continue medication indefinitely’ - ongoing treatment planned for example when starting daily aspirin or a statin. There will be circumstances where you would stop them such as a GI bleed.
*   ‘do not discontinue’ refers to medication where suddenly stopping could be dangerous, for example the abrupt withdrawal of long-term steroids.

The medication change cluster and medications discontinued cluster both derive from discharge standards to ensure clarity of what medications had changed or been stopped in hospital. They are retained in the core information standard as they may still be useful to professionals in understanding previous medications.

The Medical devices element is for medical devices that cannot be prescribed and do not have representation in the NHS dictionary of medicines and medical devices (dm+d). Whilst medical devices that can be prescribed in primary care are generally well represented in dm+d, there are other kinds of devices used in hospital care which may not be so this section provides for this.

### 3.30 Plan and requested actions

This is the treatment plan for the treating team or clinician and any actions requested. This plan should make clear who is expected to take responsibility for actions following an encounter, for example the person receiving care or their carer; the GP or another heath care professional. For example, follow up renal function test to be arranged by the GP within two weeks of appointment.

Shared decision-making principles should apply to the development of the plan and where the person’s opinions differ, this should be included under ‘Agreed with the person or their legitimate person representative’ which will include both the aspects of the plan the person (or their representative) agree with and the aspects they disagree with.

The section would allow for the recording of planned investigations, procedures and treatment for the person’s identified conditions and priorities.

This is not a care plan it is a plan for specific actions to be carried out as a result of an encounter.

### 3.31 About Me

This section supports sharing of information that the person thinks it is important to share with professionals. This could include information about their needs, preferences, concerns and wishes. For example, it could include that a person has a pet that would need looking after were they to go into hospital. For more detailed implementation guidance please look at the following link https://theprsb.org/wp-content/uploads/2021/06/About-Me-Implementation-Guidance-v1.4.pdf

‘About me’ should be prominently displayed in the 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 ‘About me’ and things like ‘Advance Directives’ and preferences and wishes expressed in other care plans such as end of life plans.

## 4 Care and Support Plan

*   It should be possible to restrict access to the care and support plan in most cases based on the individual’s consent preferences. However, a data controller may choose to release all or part of the record for legitimate reasons, for example when a person using services is unable to give consent.
*   It should be possible to add attachments or hyperlinks in care and support plans to provide guidance, learning materials, explanatory notes, etc. The date/time of the hyperlink/addition should be included.
*   It should be possible to add comments to the plan and to sections in the plan, for example. to identify progress towards a goal (which should have a formal mechanism associated for capturing information). It should also be possible to comment on actions undertaken or suggest changes to actions. Note that adding comments to a plan is not the same as having a dialogue with others involved in the care and support planning process. Separate functionality, e.g. secure messaging would be required for this.

**Care and Support Plan &gt; Strengths**

*   Definition: Any strengths and assets the person has (i.e. things a person is good at or enjoys doing) relating to their goals and hopes about their health and well-being For example, ‘able to participate in leisure activities’ such as a sport in order to improve health and wellbeing by losing weight.

**Care and Support Plan &gt; Needs, Concerns or Problems**

*   **Needs** are defined as health or care deficits identified by the person with their carer(s) or professionals and are the motivations/indications for healthcare activities. Examples of needs could be (e.g.) ‘to dress myself’; ‘to better understand what my various medications are for’; ‘to reduce pain in my knees’.
*   **Concerns** are gathered information to support continuity of care for a person. Concerns can include biological, psychological or social concerns. They may include things the person or carer is concerned about. For example, a person’s concern may be ‘the quality of social housing’; a professional’s concern could be ‘high blood pressure’
*   **Problems** are defined as: A condition that needs addressing and is important for every professional to know about when seeing a person. Problems may include diagnoses (e.g. COPD; diabetes), symptoms (e.g. joint pain; breathlessness), disabilities (e.g. sensory impairments; amputations), health, social and behavioural issues. Problems recorded here may link to the problem list held in a shared care record or GP system for a person using services.
*   **Goals and hopes** are defined as: The overall goals, hopes, aims or targets that the person has. Including anything that the person wants to achieve that relates to their future health and wellbeing. Each goal may include a description of why it is important to the person. Goals may also be ranked in order of importance or priority to the person. For example, ‘weight loss’; smoking cessation’; ‘reducing alcohol intake’; ‘increased sleep’. ‘Goals’ tends to be historically a more medically-used term, whereas ‘hopes’ is used more widely in social care settings.
*   It should be possible to include tables (e.g. weekly schedule), diagrams or images (e.g. to illustrate how a person has made progress towards a goal) as well as video and audio clips (i.e. as a communication tool for individuals with complex accessibility requirements).
*   It should be possible to prioritise goals, indicating the importance of each goal to the person (e.g. a scale 1 to 10).
*   Each action may also have an associated additional indicator showing how confident the person is to carry it out (e.g. a scale from 1 to 10).
*   The care and support plan should be structured in a way that supports digital information exchange, with separate sections for strengths, needs and problems which can be linked to specific goals.
*   Of particular importance is the link between needs in a care plan and related goals. Each goal must link to specific needs, as well as any actions associated with it. Goals may also have related outcomes.
*   The sections associated with goals and actions that are the focus of specific care professionals should be interoperable with the care plan that professional uses for their day to day work.

Updates to the care and support plan section may include:
*   Add, edit or archive strengths, needs, concerns or problems. If a strength/need/concern becomes more or less important, then goals may need to be changed, as will associated actions.
*   Add, edit or archive goals. When a goal is archived it should be possible to also archive the actions associated with it. If the actions are still valid it should be possible to attach them to another goal.
*   Add, edit or archive actions. Once an action has been completed (i.e. status updated to indicate it has been completed), it should be possible to archive it from the care and support plan. It should be removed from the current active view of the plan, but available to view in previous versions of the plan.
*   Recording outcomes related to goals. Once a goal has been achieved, it should be possible to archive it from the care and support plan, so that it is removed from the view of the current plan, but available to view in previous versions of the care and support plan.

**Care and Support Plan &gt; Agreed with person or legitimate representative**
*   Agreement of the plan with the person (or representative) should be recorded. If agreement cannot be obtained the reason for this should be documented.
*   Where a person has been unable to agree, due to, for example, lacking mental capacity, actions should be undertaken to maximise capacity and the plan should demonstrate how a person’s rights will be promoted. If a person is unable to consent, a mental capacity assessment should be attempted, and if there is no legal representative a best interest decision made.

**Care and Support Plan &gt; Care Funding Source**
*   In health and social care there may be different sources of funding (e.g. personal budget/personal health budgets) to meet the aims and goals of the person. The ‘Care Funding Source’ section should only detail the source of the funding so as to support easy resolution where a question about funding arises. The information should not include the details of the funding, which will be held in separate documents.

**Care and Support Plan &gt; Date this plan was last updated**
* This information should be automatically retrievable from the system.

## 5 Contingency/safety plans

* Contingency/safety plans are known by other terms depending on care setting. In mental health for example, ‘safety plans’ is a commonly understood term while medically these are more commonly known as ‘Contingency plans’. Please see section 5 for a list of alternative terms.
* Not everyone who has a care and support plan will need a contingency/safety (also known as crisis/emergency/escalation/advance/anticipatory) plan. See the Glossary (section 5) which includes alternative names for care planning concepts in the standard.
* This plan is for those people who have specific and predictable risks associated with their health and wellbeing. It describes how disruptions to the care and support plan should be addressed.
* There may be a number of different contingency/safety plans to manage different aspects of health and wellbeing, e.g. diabetes, respiratory, mental health, substance misuse, etc. The plan may cover different scenarios, e.g. mild disruption/issues, through to more severe.
* It must be possible to create a contingency/safety plan at any time when the individual and those providing care and support identify a need for such a plan.
* Contingency/safety plans must be subject to or as a result of an assessment.
* Contingency/safety plans may include end of life care planning elements. These only form part of an initial conversation and a full end of life care plan should be included separately as an end of life care document.
* The ‘Coping Strategies’ element should include details of all coping strategies used in free text. Any tools used to carry out the coping strategy should be included here.
* Coping strategies may need to be regularly updated as it may depend on the stage of recovery the person is at.

## 6 Additional supporting plans

* It must be possible to hold additional supporting plans, which may be linked to the care and support plan where the individual or care professional decides that the information should be available to others. Examples of additional supporting plans: asthma plan, mental health plan, tissue viability plan, nutrition plan, falls prevention plan, hospital or other service transfer of care plan, etc.
* The format of additional supporting plans will vary according to the type of plan. Some may be structured and coded, some may include diagrams or images.
* Additional supporting plans should be available for others to view, but will only be created, updated and ended by the service creating the plan. These may be made available on the National record Locator Service (NRL) in PDF format.
* When an additional supporting plan is updated a new version of the plan may be linked to the care and support plan, again at the discretion of the individual or care professional.
* Educational and health care plans are produced for people with neurodevelopmental conditions and apply up to the age of 25. However, they transition into adult services earlier so it is important to note that this plan may exist at the same time as a care and support plan.

### 6.1 End of life care

This section contains information that would be expected in an end of life care plan that does not appear elsewhere in the core information standard. This is not a representation of an end of life care plan as it would be expected to include this information as well as information covered elsewhere in the standard. The information included in the standard is consistent with the end of life minimum dataset and SCCI1580. However, PRSB recognises that there is work to do to develop a nationally agreed information standard for an end of life care plan.

### 6.2 Documents

This section includes details for documents and images. It includes the metadata that is required for the document or image and a link to the actual document or image. When displayed in a record, documents and images should be organised logically in date order. Local implementations will need to determine the best logical groupings for use here.

A specific cluster is included for images as these are a special case where there is a document (e.g. a KOS document) with information about the image and often produced by the machine or imaging system, and a specific set of additional information (such as event code list and format code). Note that this document is separate from the investigation report which provides the results or interpretation of the imaging. For images the performing professional will be the person performing the imaging procedure rather than the author.

## 7 PRSB support

The PRSB support service is available for any help, enquiries or issues with the using or implementing the standards. Any feedback on the standard (including proposed changes) resulting from putting the standard into practice would also be welcome.

Contact is via [support@theprsb.org](mailto:support@theprsb.org) or Tel: 02079227976

CORE INFORMATION STANDARD  IMPLEMENTATION GUIDANCE

## CORE INFORMATION STANDARD SURVEY RESULTS AND ANALYSIS

JULY 2019

#### Revision History


<table>
  <thead>
    <tr>
      <th>Version</th>
      <th>Date</th>
      <th>Summary of Changes</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>1.0</td>
      <td>31/05/19</td>
      <td>Publication version</td>
    </tr>
  </tbody>
</table>

#### Approved by


<table>
  <thead>
    <tr>
      <th>Name</th>
      <th>Date</th>
      <th>Version</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Project Board</td>
      <td>26/06/19</td>
      <td>0.6</td>
    </tr>
    <tr>
      <td>PRSB Assurance Committee</td>
      <td>19/06/19</td>
      <td></td></tr></tbody></table>

### 1 Introduction

This is an appendix to the final report for the core information standard.

The online survey was one part of the overall consultation approach in the development of the core
information standard and came after detailed work on specific topic areas and a national workshop on the
entire standard. The survey ran from 1 April 2019 to 1 May 2019. Feedback from the consultation prior to
the survey (webinars, citizen's focus group and a national workshop) was used in the design of the survey.
The survey was aimed at frontline care professionals, people who use services and their carers and
systems suppliers. This report includes the results and analysis of the survey. The findings from the survey
were used to inform the development of core information standard. In total 1010 individuals participated in
the survey.

The survey was sent to 1325 individuals, including advisory board representatives and key contacts to
distribute across their networks. Additionally, it was distributed to the 708 subscribers of the PRSB
newsletter, the 413 stakeholders who we identified as possible attendees for the webinars and workshops,
and past workshop attendees. The survey was featured in a number of publications such as the NHS
Improvement provider bulletin, Digital Health Intelligence, NHS England CCG bulletin, NHSE Informed and
NHSE Intouch, on professional platforms such as Ryver and with other groups including the Pharmacy
Digital Forum and Scottish Children's Cancer and Leukaemia Group members. The survey was also
tweeted, with 325 re-tweets and more than 81,000 impressions.

The survey was also publicised through the chief social and adult and children's social care directors, the
care provider alliance representing up to 2 million working in domiciliary care and care homes, system
suppliers, LHCR teams and patient groups such as the Wellcome Trust, Understanding Patient Data,
National Voices representing 140 charities and the Patient Information Forum representing 300+ charities.

The first two questions of the survey identified respondents' roles and the settings in which they work; these
are shown below:

#### 1.1 Q1. Please tell us which of the following best matches your role. Please tick the appropriate job description and add more detail in the box provided below about your specific role.

(Answered: 1,010, Skipped: 0)

<p>///mermaid
xychart-beta
    title "Count of Responses by Professional Role (Descending Order)"
    accTitle: Count of Responses by Professional Role (Descending Order)
    accDescr: This chart shows which professional roles gave the most responses, starting with the highest. People working in NHS administration and management gave the most answers, followed by patients or service users, nurses, and allied health professionals. Other roles like doctors, social care staff, and pharmacists gave fewer responses, and midwives gave the least. It helps us see which groups were most involved in sharing their views.
    x-axis ["NHS\nadministration",
            "Patient or\nservice user",
            "Nurse",
            "Allied health\nprofessional",
            "Secondary care\ndoctor",
            "Social care\nprofessional",
            "General\npractitioner",
            "Health/care system\nvendor",
            "Mental health/\nlearning disability\nprofessional",
            "Pharmacist",
            "Carer",
            "Midwife"]
    y-axis "Count"
    bar [207, 189, 117, 107, 82, 82, 59, 43, 42, 42, 34, 6]
</p>

<a href="">Explain the Count of Responses by Professional Role (Descending Order) bar chart diagram</a>
<div>This chart shows which professional roles gave the most responses, starting with the highest. People working in NHS administration and management gave the most answers, followed by patients or service users, nurses, and allied health professionals. Other roles like doctors, social care staff, and pharmacists gave fewer responses, and midwives gave the least. It helps us see which groups were most involved in sharing their views.</div>

<table>
  <thead>
    <tr>
      <th>ANSWER CHOICES</th>
      <th>RESPONSES (%)</th>
      <th>COUNT</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>General practitioner</td>
      <td>5.84%</td>
      <td>59</td>
    </tr>
    <tr>
      <td>Secondary care doctor</td>
      <td>8.12%</td>
      <td>82</td>
    </tr>
    <tr>
      <td>Nurse</td>
      <td>11.58%</td>
      <td>117</td>
    </tr>
    <tr>
      <td>Midwife</td>
      <td>0.59%</td>
      <td>6</td>
    </tr>
    <tr>
      <td>Mental health/ learning disability professional</td>
      <td>4.16%</td>
      <td>42</td>
    </tr>
    <tr>
      <td>Social care professional</td>
      <td>8.12%</td>
      <td>82</td>
    </tr>
    <tr>
      <td>Allied health professional</td>
      <td>10.59%</td>
      <td>107</td>
    </tr>
    <tr>
      <td>Pharmacist</td>
      <td>4.16%</td>
      <td>42</td>
    </tr>
    <tr>
      <td>Health/care system vendor or developer</td>
      <td>4.26%</td>
      <td>43</td>
    </tr>
    <tr>
      <td>NHS administration/ management</td>
      <td>20.50%</td>
      <td>207</td>
    </tr>
    <tr>
      <td>Patient or service user</td>
      <td>18.71%</td>
      <td>189</td>
    </tr>
    <tr>
      <td>Carer</td>
      <td>3.37%</td>
      <td>34</td>
    </tr>
    <tr>
      <td><strong>TOTAL</strong></td>
      <td></td>
      <td>1,010</td>
    </tr>
  </tbody>
</table>

#### 1.2 Q2. Please describe the setting in which you work.

Answered: 1,010 Skipped: 0

<p>///mermaid
pie
accTitle:  Distribution of Responses by Care Setting
accDescr: This chart shows where people who answered the survey work or receive care. Most responses came from people who chose “Other” or said it didn’t apply because they were a patient or carer. After that, the biggest groups were from hospitals, community care, and GP services. Fewer responses came from local authorities, mental health services, care at home, and specialist centres, and almost none from residential care homes. It gives a clear picture of which settings were most involved.
title Distribution of Responses by Care Setting
    "Other, please specify" : 261
    "Not applicable (Patient/Carer)" : 180
    "Acute hospital" : 169
    "Community care" : 150
    "Primary care" : 113
    "Local authority" : 71
    "Mental health/learning disability" : 37
    "In a person's home" : 17
    "Specialist centre of care" : 12
    "Residential care home" : 0
</p>
<a href="">Explain the Distribution of Responses by Care Setting pie chart diagram</a>
<div>This chart shows where people who answered the survey work or receive care. Most responses came from people who chose “Other” or said it didn’t apply because they were a patient or carer. After that, the biggest groups were from hospitals, community care, and GP services. Fewer responses came from local authorities, mental health services, care at home, and specialist centres, and almost none from residential care homes. It gives a clear picture of which settings were most involved.</div>



<table>
  <thead>
    <tr>
      <th>ANSWER CHOICES</th>
      <th>RESPONSES (%)</th>
      <th>COUNT</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Acute hospital</td>
      <td>16.73%</td>
      <td>169</td>
    </tr>
    <tr>
      <td>Primary care</td>
      <td>11.19%</td>
      <td>113</td>
    </tr>
    <tr>
      <td>Community care</td>
      <td>14.85%</td>
      <td>150</td>
    </tr>
    <tr>
      <td>Mental health/ learning disability hospital</td>
      <td>3.66%</td>
      <td>37</td>
    </tr>
    <tr>
      <td>In a person's home</td>
      <td>1.68%</td>
      <td>17</td>
    </tr>
    <tr>
      <td>Residential care home</td>
      <td>0.00%</td>
      <td>0</td>
    </tr>
    <tr>
      <td>Local authority</td>
      <td>7.03%</td>
      <td>71</td>
    </tr>
    <tr>
      <td>Specialist centre of care</td>
      <td>1.19%</td>
      <td>12</td>
    </tr>
    <tr>
      <td>Not applicable - I am a person who uses services or a carer</td>
      <td>17.82%</td>
      <td>180</td>
    </tr>
    <tr>
      <td>Other, please specify</td>
      <td>25.84%</td>
      <td>261</td>
    </tr>
    <tr>
      <td><strong>TOTAL</strong></td>
      <td></td>
      <td></td>
    </tr>
  </tbody>
</table>

#### 2.1 Introduction

Each question is shown in the following sections together with quantitative statistics and key themes that emerged from qualitative analysis on the comments (where available).

#### 2.2 Q3. Do you agree that sharing core information will bring these benefits?

Answered: 1,010 Skipped: 0

<p>///mermaid
xychart-beta
    title "Agreement on Benefits of Care Data"
    x-axis ["Improve quality", "Make care more efficient", "Lead to better integration", "Support people who access...", "Support better care planning"]
    y-axis "Percentage of Responses" 0 --&gt; 100
    
    bar "Strongly agree" [75, 72, 72, 55, 63]
    bar "Agree" [23, 25, 25, 29, 32]
    bar "Neither agree or disagree" [4, 5, 7, 18, 8]
    bar "Strongly disagree" [0, 1, 0, 3, 2]
	</p>




- More than 90% or respondents think sharing core information would improve quality, safety, efficiency, integration and planning and research. More than 80% of respondents believe sharing core information will support people who access services to take more control and manage their own care.
- None of the doctors, nurses and social care professionals that took part in the survey expressed strong disagreement that sharing information would bring benefits.
- Allied health professionals were less sure of the benefits that sharing of core information would bring across the board with a small percentage strongly disagreeing that it would improve quality, safety, efficiency, integration, support for people and planning and research.
- Carers and pharmacists were more confident, none disagreed or strongly disagreed that sharing core information would have the various listed benefits.
- People who use services were least sure about the potential benefits, with 6.03 % disagreeing that sharing core information will be beneficial and 10.05% stating they were unsure that sharing would deliver the listed benefits.<table>
  <thead>
    <tr>
      <th></th>
      <th>STRONGLY AGREE</th>
      <th>AGREE</th>
      <th>NEITHER AGREE OR DISAGREE</th>
      <th>DISAGREE</th>
      <th>STRONGLY DISAGREE</th>
      <th>TOTAL</th>
      <th>WEIGHTED AVERAGE</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Improve the quality and safety of care</td>
      <td>73.56%</td>
      <td>21.88%</td>
      <td>2.97%</td>
      <td>0.89%</td>
      <td>0.69%</td>
      <td>1,010</td>
      <td>1.33</td>
    </tr>
    <tr>
      <td></td>
      <td>743</td>
      <td>221</td>
      <td>30</td>
      <td>9</td>
      <td>7</td>
      <td></td>
      <td></td>
    </tr>
    <tr>
      <td>Make care more efficient</td>
      <td>70.40%</td>
      <td>23.37%</td>
      <td>4.46%</td>
      <td>1.09%</td>
      <td>0.69%</td>
      <td>1,010</td>
      <td>1.38</td>
    </tr>
    <tr>
      <td></td>
      <td>711</td>
      <td>236</td>
      <td>45</td>
      <td>11</td>
      <td>7</td>
      <td></td>
      <td></td>
    </tr>
    <tr>
      <td>Lead to better integration between health and care services</td>
      <td>70.69%</td>
      <td>22.48%</td>
      <td>5.05%</td>
      <td>1.09%</td>
      <td>0.69%</td>
      <td>1,010</td>
      <td>1.39</td>
    </tr>
    <tr>
      <td></td>
      <td>714</td>
      <td>227</td>
      <td>51</td>
      <td>11</td>
      <td>7</td>
      <td></td>
      <td></td>
    </tr>
    <tr>
      <td>Support people who access services to take more control and manage their own care</td>
      <td>52.87%</td>
      <td>27.13%</td>
      <td>16.34%</td>
      <td>2.48%</td>
      <td>1.19%</td>
      <td>1,010</td>
      <td>1.72</td>
    </tr>
    <tr>
      <td></td></tr></tbody></table>

#### 2.3 Q4. What concerns do you have about sharing core information?

Answered: 835 Skipped: 175

The concerns raised were grouped into themes. The chart below shows how often they were mentioned as a percentage of the total comments.

<p>///mermaid
xychart-beta
    title "Identified Barriers to Sharing Data (Descending Count)"
    x-axis ["Information governance", "Quality", "None", "Ownership/ consent", "comms&amp;understanding", "Systems &amp; methods", "Safety", "Info overload", "Culture", "Other"]
    y-axis "Response Count"
    bar [429, 154, 113, 113, 64, 64, 32, 29, 20, 1]
</p>


<table>
  <thead>
    <tr>
      <th></th>
      <th>%</th>
      <th>Count</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>comms&amp;understanding</td>
      <td>7.66%</td>
      <td>64</td>
    </tr>
    <tr>
      <td>Culture</td>
      <td>2.40%</td>
      <td>20</td>
    </tr>
    <tr>
      <td>Info overload</td>
      <td>3.47%</td>
      <td>29</td>
    </tr>
    <tr>
      <td>Information governance</td>
      <td>51.38%</td>
      <td>429</td>
    </tr>
    <tr>
      <td>None</td>
      <td>13.53%</td>
      <td>113</td>
    </tr>
    <tr>
      <td>Other</td>
      <td>0.12%</td>
      <td>1</td>
    </tr>
    <tr>
      <td>Ownership/consent</td>
      <td>13.53%</td>
      <td>113</td>
    </tr>
    <tr>
      <td>Quality</td>
      <td>18.44%</td>
      <td>154</td>
    </tr>
    <tr>
      <td>Safety</td>
      <td>3.83%</td>
      <td>32</td>
    </tr>
    <tr>
      <td>Systems &amp; methods</td>
      <td>7.66%</td>
      <td>64</td>
    </tr>
  </tbody>
</table>


Key:

*   Comms and understanding – health literacy/ accessibility, public engagement – purpose/benefits of information sharing etc.
*   Culture – working practice, habits, clinician priorities, lack of change etc.
*   Info overload – too much to read given clinicians' heavy workload, important information buried etc.
*   Information governance – security, unauthorised access, GDPR, selling of data for profit, data leaks etc.
*   Ownership/consent – informed consent, patient held, patient granted access, information belongs to the patient
*   Quality – accuracy, inconsistencies, error, interpretation, out of date etc.
*   Safety – confidentiality, safeguarding, sensitive information
*   Systems and methods – IT, investment, lack of interoperability, system crashes, breadth of consultation, information model etc.


- Information governance was the most commonly cited concern overall and from each group of respondents when analysing their responses individually. There was fairly widespread concern regarding the sharing of data with wider industry for commercial exploitation, in particular health and holiday insurance companies and financial institutions. 36 respondents directly mentioned concerns about the sale of data. A small number of respondents commented that the rigours of GDPR and IG were a barrier to successfully sharing information (or were used as such). People who use services were the group that most frequently expressed concerns over information governance, with 61% of these respondents mentioning information governance concerns in their responses.
- The second most cited concern for GPs, pharmacists, vendors, people who use services and their carers was the quality of the information shared. How to identify the source, accuracy and timeliness of the data came up numerous times.
- The second biggest concern for nurses and midwives was systems and methods.
- The second biggest concern for social care professionals was ownership and consent.
- Doctors, midwives, social care and mental health professionals were interestingly less concerned with information overload.

A number of themes emerged from the qualitative analysis:

**Information Governance and Security**
A common theme was expressions of concern about:
- Information governance
- GDPR
- Cyber security including security breaches, unauthorised access, and data being hacked

**Data Quality**
Concerns were also raised about potential data quality issues including:
- How to identify the 'source' of data, how to determine the accuracy of data if held in different systems, and how updates would be refreshed
- How to ensure the timeliness of data and ensure it was the most up to date
- What if data is missing?
- Who is accountable for the accuracy of data?
- Who has entered the data?
- Individual's ability to point out inaccuracies and have them put right
- Concern was expressed that if patients were uploading data, e.g. blood pressure, how could its accuracy be assured?

**Data ownership**
A number of respondents were keen to emphasise that the individual, not the system, owned the data.

**Information access**
Several common themes emerged regarding information access:
- access should be on a role-based 'need to know' basis
- individuals should have the right to restrict access to information
- individuals should have access to all their information
- individuals should be informed about who has access to their information, and who has actually viewed it
- concerns were raised regarding accessibility to information for those with learning disabilities, dementia and older people
- the requirement to have safeguards to prevent healthcare professionals accessing patient information for whom they are not clinically responsible.
- Clarification of GDPR rules. What about in an emergency situation? Breaking the glass?

**Consent**
Several common themes emerged regarding consent to share information:

- How will consent to share data be approached? If patients have the right to restrict access to information, then consent needs to be considered flexibly and not as 'all or nothing'
- If patients do not trust or have confidence in the system, they may withhold consent, or withhold information, either of which could compromise safety
- Capacity for consent
- Potential for patients to be coerced into sharing data that they do not wish to
- Will multiple healthcare professionals all have to ask for explicit consent from a patient?

**Effective communications and engagement**
- A common theme was that there was a need for effective communications and engagement to gain public and patient confidence and trust in sharing information.

**'About me'**
- The comment was made that 'about me' should be the cornerstone, and that a person-centred approach should be adopted.
- Conversely, the comment was made that the approach should be to prioritise clinical benefits over patient access and self-management.

**Retaining clinical context**
- Several respondents identified that data without context may at best be meaningless, and at worst may compromise safety. There is a need for provenance and for supporting information.

**Documents Transfer**
- The requirement to be able to transfer documents is considered key and is linked with context.

**Information overload**
- A common view was expressed that there was a fear of information overload if important information is not made easily accessible.
- There was also a concern raised that critical information might be missing.

**Meaningful for people and professionals**
- The view was expressed that information must be meaningful for people who use services as well as professionals. Health literacy will vary, and complex terminology will not be understood by some people who use services.
- A need was also identified to train professionals in how to populate information to avoid confusion.

**What is core information?**
- There was confusion over what should be core information.
- The view was expressed that this definition of core information was aspiring to be comprehensive and not just essential information.

"Patients/people receiving care understanding what they are sharing and for what purpose and can easily and securely express and change their preferences on how their data is used. • Ensuring security and appropriateness of access • Willingness of health partners to share. • Understanding of GDPR 'vs' patient confidentiality. • Making sure it is easy for frontline staff to access the information- any additional barriers will prevent staff from accessing the information. • Driving information system development from a purely technical / digital strategy perspective not addressing care outcomes, will reduce shared data use and access to shared information. • Ability to fund the necessary skills training, care pathway developments, integrations and system supplier costs. • Data sharing is a people issue; it won't just be delivered by new software and hardware. • Silo working in care organisations focusing purely on internal operational needs creates inconsistent data standards and interoperability between key parts of the care economy" (Local authority - commissioning and social care professional)

"Integration will be slow and impeded by lack of interoperability between systems, IG requirements, cost and training time to implement" (Pharmacist, acute hospital)

#### 2.4 Q5. Which of the following benefits would people who use services get from contributing to the information held in their health and care records? For example recording their needs, values and preferences or measurements they have taken such as blood pressure.

Answered: 1,010 Skipped: 0

<p>///mermaid
xychart-beta
    title "Agreement on Benefits of Care Data"
    x-axis ["Improve communication", "Promote self-management", "Support joint decisions", "Improve efficiency", "Reduce burden", "Improve safety"]
    y-axis "Percentage of Responses" 0 --&gt; 100
    
    
    bar "Strongly agree" [61, 48, 56, 66, 40, 52]
    bar "Agree" [32, 36, 34, 26, 30, 32]
    bar "Neither agree or disagree" [5, 13, 8, 6, 22, 13]
    bar "Disagree" [1, 2, 1, 2, 6, 2]
    bar "Strongly disagree" [1, 1, 1, 1, 2, 1]
	</p>


<table>
  <thead>
    <tr>
      <th></th>
      <th>STRONGLY AGREE</th>
      <th>AGREE</th>
      <th>NEITHER AGREE OR DISAGREE</th>
      <th>DISAGREE</th>
      <th>STRONGLY DISAGREE</th>
      <th>TOTAL</th>
      <th>WEIGHTED AVERAGE</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Improve communication including the timeliness of information sharing e.g. sharing test results</td>
      <td>60.95%</td>
      <td>31.71%</td>
      <td>5.25%</td>
      <td>0.99%</td>
      <td>1.09%</td>
      <td>1,009</td>
      <td>1.50</td>
    </tr>
    <tr>
      <td></td>
      <td>615</td>
      <td>320</td>
      <td>53</td>
      <td>10</td>
      <td>11</td>
      <td></td>
      <td></td>
    </tr>
    <tr>
      <td>Promote people managing their own care</td>
      <td>47.87%</td>
      <td>35.68%</td>
      <td>13.28%</td>
      <td>1.98%</td>
      <td>1.19%</td>
      <td>1,009</td>
      <td>1.73</td>
    </tr>
    <tr>
      <td></td>
      <td>483</td>
      <td>360</td>
      <td>134</td>
      <td>20</td>
      <td>12</td>
      <td></td>
      <td></td>
    </tr>
    <tr>
      <td>Support making joint decisions with professionals about their care</td>
      <td>55.74%</td>
      <td>34.26%</td>
      <td>7.72%</td>
      <td>1.29%</td>
      <td>0.99%</td>
      <td>1,010</td>
      <td>1.58</td>
    </tr>
    <tr>
      <td></td>
      <td>563</td>
      <td>346</td>
      <td>78</td>
      <td>13</td>
      <td>10</td>
      <td></td>
      <td></td>
    </tr>
    <tr>
      <td>Improve efficiency e.g. avoid repeating information</td>
      <td>66.14%</td>
      <td>25.54%</td>
      <td>5.54%</td>
      <td>1.78%</td>
      <td>0.99%</td>
      <td>1,010</td>
      <td>1.46</td>
    </tr>
    <tr>
      <td></td>
      <td>668</td>
      <td>258</td>
      <td>56</td>
      <td>18</td>
      <td>10</td>
      <td></td>
      <td></td>
    </tr>
    <tr>
      <td>Reduce burden on professionals</td>
      <td>40.38%</td>
      <td>29.86%</td>
      <td>22.02%</td>
      <td>5.75%</td>
      <td>1.98%</td>
      <td>1,008</td>
      <td>1.99</td>
    </tr>
    <tr>
      <td></td>
      <td>407</td>
      <td>301</td>
      <td>222</td>
      <td>58</td>
      <td>20</td>
      <td></td>
      <td></td>
    </tr>
    <tr>
      <td>Improve safety</td>
      <td>51.98%</td>
      <td>31.55%</td>
      <td>13.49%</td>
      <td>1.69%</td>
      <td>1.29%</td>
      <td>1,008</td>
      <td>1.69</td>
    </tr>
    <tr>
      <td></td>
      <td>524</td>
      <td>318</td>
      <td>136</td>
      <td>17</td>
      <td>13</td>
      <td></td>
      <td></td>
    </tr>
  </tbody>
</table>


- A large majority of respondents agree that people who use services would benefit from contributing to the information held in their health and care records.
- Front line staff, people who use services and their carers, vendors and administrators were least convinced that people contributing to their records would reduce the burden on professionals.
- Social care, mental health and learning disability professionals and people who use services were most convinced that people contributing to their own record would benefit them positively and that it would support joint decision making. Whereas vendors were less convinced that people contributing to their record would encourage joint decision making.
- Allied health professionals and social care professionals were least convinced that people contributing to their record would improve safety, but nurses and pharmacists thought the opposite, that people's contribution would ensure safety.

**154 people left comments**

A number of themes emerged from the qualitative analysis:

**Whole person view**
- This will facilitate a more holistic view of the individual and how they perceive their situation, needs and wants. The person's voice will be heard. The focus will be on the person not the pathway.
- Some people did express the view that they didn't see how it would actually help them manage their own care.

**Benefits realisation**
- Significant concerns were raised that potential benefits would not be realised if the development and implementation of the core information standard was not done well. It is not just about the information but about changing the business model and providing adequate training.

**Other potential benefits**
Several other potential benefits were identified including:
- Reverse the rise in treatment of those who have expressed the wish for no further treatment
- Reduction in prescribing errors
- Allow some care to be moved outside of the acute setting to the home e.g. routine out-patient appointments
- Use data for research and analysis to improve public health

#### 2.5 Q6. Can you see any issues arising as a result of people who use services contributing to and sharing their information?

<p>///mermaid
xychart-beta
    title "Survey Responses (Yes/No/Not Sure)"
    x-axis ["Yes", "No", "Not sure"]
    y-axis "Percentage" 0 --&gt; 100
    bar [51.73, 26.32, 21.95]
	</p>

Answered: 984 Skipped: 26


<table>
  <thead>
    <tr>
      <th>ANSWER CHOICES</th>
      <th>RESPONSES (%)</th>
      <th>COUNT</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Yes</td>
      <td>51.73%</td>
      <td>509</td>
    </tr>
    <tr>
      <td>No</td>
      <td>26.32%</td>
      <td>259</td>
    </tr>
    <tr>
      <td>Not sure</td>
      <td>21.95%</td>
      <td>216</td>
    </tr>
    <tr>
      <td><strong>TOTAL</strong></td>
      <td></td>
      <td>984</td>
    </tr>
  </tbody>
</table>


*   Carers and midwives were the only groups from which a minority of respondents thought that people contributing to their own record would cause issues. Most carers said they were unsure, and midwives were split, with 33.33% responding yes, no and not sure.
*   Allied health professionals, patients, pharmacists, doctors and GPs foresaw the most issues with people contributing to their record. GPs were the most worried with 82.76% expecting issues to arise as a result of people using services contributing to and sharing their information.

573 people left comments



A number of themes emerged from the qualitative analysis:

**Data quality / accuracy**
Quite extensive concern about how the quality and accuracy of data entered by individuals could be validated. Concerns were expressed about:
*   Capacity to enter accurate data in particular regarding mental health issues, learning difficulties etc. Need to assess person's competence.
*   Person entering incorrect information which might result in a practitioner making an incorrect judgement.
*   Information may be out of date.
*   Particular concerns over patients entering medical data e.g. blood pressure incorrectly whether by accident or design. In the former, where does clinical responsibility lie? In the latter, for example, a patient may think they will get a better response if they were to exaggerate. Will clinicians need to validate data entered by patients?

**Information which may cause anxiety**
*   Concerns were expressed that it may cause undue anxiety to patients were they to access information which had not been shared with them by their healthcare professional, e.g. test results which were outside the norm.

**Inequality of access**
*   Concern was raised about those who might not have access to computers, e.g. the elderly, or those who might have learning difficulties.

**Information sharing - what next?**
*   Concerns were expressed that this would increase workload as, if information is shared, someone has to read it.
*   In addition, if a person enters data, is a professional expected to respond? This might range from a person stating that they had suicidal thoughts, to a delay in seeking help as the person had entered information which they might think would elicit a response, to the 'worried well' providing excessive information.

**Vulnerable users**
*   Concerns were raised about at risk or vulnerable patients being manipulated by others, in particular safeguarding issues where the person causing the risk might access information about the at risk person.

**Health and social literacy**
*   The use of complex terms, terms with specific meaning and acronyms etc. in both health and social care may be problematic for people accessing their information and this needs to be addressed as an implementation issue.

"A lot of information is open to interpretation by the reader, so the need for further explanation might arise and introduce delay, confusion or waste. However, I believe that the probable benefits outweigh the possible risks. Also, as a patient, I have seen how interpretation of information has led to poor communication among healthcare professionals. The patient/carer can act as "glue" when given access to their own information. And as much as professionals believe that they have communicated fully with patients, the truth is that patients often are not given full information about themselves. Some patients, of course, don't want this. I certainly do." (Person using services)

"A concern that when I contribute to my record - add something - that HCPs won't read it or action it. Currently I use the online prescriptions service, but my practice never reads any of the comments or questions I put in the free text box. They've told me that they don't have the time to read them." (Person using services)


"However big transformation needed. GPs in particular seem to be worried about capacity to read
information and act on it. We need to be clear with patient / citizen which of their information we will
act upon as soon as we receive it v that we will act upon at their next appointment when we see
them. We also need to put good informing in place.. not ask for consent. (Commercial lead / digital
consultant shared care record)

##### 2.7 Q7. Sections of the core information standard. Here is a summary of the key information included in the core information standard. Please rate how important this information is to you. Think about what information it would be helpful to know that you can't currently access.

Answered: 1,008 Skipped: 2

*   Overall most participants ranked all the information categories important and helpful to have access to.
*   People who use services ranked each field highly.
*   Respondents thought medications and allergies followed by 'about me' and problems and diagnosis were most important and placed the least emphasis on sharing participation in research and developmental skills.
*   Nurses, social care and allied health professionals specified safeguarding as one of the things they would find most important and helpful to access. GPs, secondary care doctors and people who use services all listed medications and allergies and 'about me' as most important.

No qualitative analysis was undertaken as this question was establishing the adjudged importance of each section.

#### 2.8 Q8. What, if anything, is missing from the list of core information?
Answered: 361 Skipped: 649

In response to the question on what is missing from the information model a number of respondents focused on functionality they would expect to see when accessing the information such as:

*   Signposting to relevant information or services
*   Weighting of importance of information for particular roles
*   Identification of frequency of visits (e.g. to A&amp;E)
*   Links between information e.g. legal documents and plans or link between problems and encounters
*   An audit trail of who had accessed what information
*   Ability to set sharing preferences
*   A record of complaints

Others focused on some of the challenges with navigating the amount of information that could be presented to the professional and the need to be able to easily find important and relevant information, so the need to consider the amount and presentation of the information to the end users.

The responses that focused on specific information items or categorise covered 7 key themes:

*   Social care – further work on care services/packages (including home care) and delivery, funding
*   Patient entered health data – e.g. from wearables and apps
*   Community recording
*   Dental and optometry records
*   Demographics – language preference, nominated pharmacy
*   Medications – adherence, administration

##### 2.9 Q9. 'About me' section for the person using services. This section is a record of the things that an individual feels it is important to communicate about their needs, strengths, values and preferences to others providing support and care. Should 'About me' be prioritised as part of the core information for everyone involved in health and care?

Answered: 1,003 Skipped: 7

<p>///mermaid
xychart-beta
    title "Survey Responses (Yes/No/Not Sure)"
    x-axis ["Yes", "No", "Not sure"]
    y-axis "Percentage" 0 --&gt; 100
    bar [51.73, 26.32, 21.95]
</p>




<table>
  <thead>
    <tr>
      <th>ANSWER CHOICES</th>
      <th>RESPONSES</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Yes</td>
      <td>81.56%</td>
    </tr>
    <tr>
      <td>No</td>
      <td>4.69%</td>
    </tr>
    <tr>
      <td>Not sure</td>
      <td>13.76%</td>
    </tr>
    <tr>
      <td><strong>TOTAL</strong></td>
      <td>1,003</td>
    </tr>
  </tbody>
</table>


*   81.56% of participants think 'about me' information should be prioritised as part of the core information record.
*   No carers, pharmacists or midwifes responded saying that they didn't think 'about me' information should be prioritised.
*   Overall, less than 5% of respondents said they didn't want 'about me' information to be prioritised. 12% of GPs and 7.32 % of doctors held this position, as did 5% of patients and people who use services.

238 people left comments



A number of themes emerged from the qualitative analysis:

**Information being entered and kept up to date**
*   Concerns were expressed about who would enter the data (person using services or the professional), who would be responsible for it and how it would be kept up to date. The latter was identified by several respondents as a significant challenge.

**Concerns about information overload**
*   Concern was raised that people might provide too much information for professionals to digest.

5. Other comments
Other notable comments included:
*   Concern about disclosure of information not relating to the care being given
*   Should be optional
*   Especially important for those with complex needs or communication difficulties
*   Provenance is important
*   Needs to be structured to be useful
*   Useful for unconscious patients / palliative / elderly to know advance directives etc
*   Should include 'who is important to me'
*   Helps carers convey to the professional who the person is
*   Will need significant investment in training and incentives for it to be used.

"It should become the norm, like a birth plan, for anyone with a health condition. But not compulsory. A patient passport model also works well" *(OT in oncology + palliative care in an acute NHS hospital trust)*

"Not necessarily a priority but would be useful to capture at some stage. Patient-centred approach is beneficial but could be challenging if patients or carers can directly upload their preferences in a shared record. How do we manage preferences such as 'I need home visits as I have no transport'? What happens if a patient uploads 'I don't want any tests or investigations as they are pointless' - how do we accept this/capacity to make decision/legal obligation to honour preferences. I think it will need more thoughts on this section." *(GP)*

"Definitely. I think we miss this information in services at the moment and it hinders the care we provide. This is the sort of information that care professionals can know which can make the care people receive exceptional rather than good. It is extremely important- especially for cultural or religious practices or preferences that a person might have. It can enable a discussion with the person about the care they receive and can enable teams to be more thoughtful and person-centred when delivering that care. I've experienced breakdowns in teams and relationships between patient and healthcare professionals because this sort of information has been missed or assumptions have been made and the person hasn't been involved in having a say about the care they receive. Even if that's as simple as "I don't like tea I like coffee," or "I don't feel comfortable with male staff providing my basic care needs- I would prefer female staff". *(Clinical psychologist)*

#### 2.10 Q10. Alerts. This section is for any significant information meriting a specific and highly visible warning to any user (e.g. metallic implant, emergency keyholder information, potentially dangerous pet). Should alerts (e.g. metallic implant, dangerous dogs) be flagged as part of the core information set?

Answered: 1,003 Skipped: 7

<p>///mermaid
xychart-beta
    title "Count of Responses by Professional Role (Descending)"
    x-axis ["NHS administrati...", "Patient or service user", "Nurse", "Allied health professional", "Secondary care doctor", "Social care professional", "General practitioner", "Health/care system vendo...", "Mental health/learning...", "Pharmacist", "Carer", "Midwife"]
    y-axis "Response Count"
    bar [207, 189, 117, 107, 82, 82, 59, 43, 42, 42, 34, 6]
	</p>


<table>
  <thead>
    <tr>
      <th>ANSWER CHOICES</th>
      <th>RESPONSES (%)</th>
      <th>COUNT</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Yes</td>
      <td>86.54%</td>
      <td>868</td>
    </tr>
    <tr>
      <td>No</td>
      <td>1.79%</td>
      <td>18</td>
    </tr>
    <tr>
      <td>Not sure</td>
      <td>11.67%</td>
      <td>117</td>
    </tr>
    <tr>
      <td><strong>TOTAL</strong></td>
      <td></td>
      <td>1,003</td>
    </tr>
  </tbody>
</table>


*   86.9 % of participants thought alerts should be flagged as part of the core information set.
*   Fewer GPs (65%) think alerts should be flagged than any other group.
*   No nurses, social care professionals or midwives disagree with sharing alerts

197 people left comments


A number of themes emerged from the qualitative analysis:

**Information being reviewed and end date noted where appropriate**
*   Concerns were expressed about data being kept up to date, and an end date entered if an alert is no longer appropriate. "Dangerous dogs eventually die. Alerts live on."
*   It was suggested that social care have good procedures for ensuring review and update.

**Categorisation**
*   It was suggested that alerts be categorised so that they would only be shown if relevant to the professional, with many giving the example that a clinician would need to know about a medical implant but not a dangerous dog, whilst the reverse may be true for someone on a home visit.

**Alert fatigue**
*   Concerns were expressed about information overload, with important alerts potentially being lost amongst more trivial information. In addition to categorisation, it was suggested that alerts should also be given a priority rating.
*   In relation to this, it was suggested that data quality could be mixed.

**Negative labelling**
*   Concerns were expressed about individuals being negatively labelled due to inaccurate or out-dated information.

**Informing individuals**
*   The view was expressed that any alert raised should be notified to the individual concerned and that they should have access to the data held and have the ability to challenge it.

"Generally sharing would be helpful, however there are some possible operational issues which need considering. For example, the definition of 'alerts' may differ between health and social care systems, some of which may not be of value to share with other agencies. Typically, data quality on alerts can be mixed, and different agencies may have different review dates/procedures for managing alert information." *(Social care professional, commissioning, local authority)*

"This section could easily become over used and important information be lost. It would be useful to split into categories e.g. information essential for medical treatment (metallic implant) vs info important for community care (dangerous dog), to allow people to filter what is relevant to them." *(Clinical Neuropsychologist, acute hospital)*

"Unreported metal skull implants prevented urgent MRI scanning in a recent emergency" *(Carer)*

##### 2.11 Q11. Assessments. This section is for documenting assessment scales such as mental health assessment scales, New York Heart Failure, Activities of Daily Living (ADL). Should assessment summaries (which include written assessment outcomes for social care and mental health) be included in the core information set?

Answered: 1,004 Skipped: 6

<p>///mermaid
xychart-beta
    title "Survey Responses (Yes/No/Not sure)"
    x-axis ["Yes", "No", "Not sure"]
    y-axis "Percentage" 0 --&gt; 100
    bar [51.73, 26.32, 21.95]
	</p>


<table>
  <thead>
    <tr>
      <th>ANSWER CHOICES</th>
      <th>RESPONSES (%)</th>
      <th>COUNT</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Yes</td>
      <td>71.41%</td>
      <td>717</td>
    </tr>
    <tr>
      <td>No</td>
      <td>8.37%</td>
      <td>84</td>
    </tr>
    <tr>
      <td>Not sure</td>
      <td>20.22%</td>
      <td>203</td>
    </tr>
    <tr>
      <td><strong>TOTAL</strong></td>
      <td></td>
      <td>1,004</td>
    </tr>
  </tbody>
</table>


*   Most groups expressed some uncertainty, with just under 30% of participants saying 'not sure' or 'no' to including assessment summaries in the core information set.
*   Nurses and mental health professionals were most keen to include assessment summaries, more than 80% of both groups marked 'yes'.

**206 people left comments**



A number of themes emerged from the qualitative analysis:

**Information being entered and kept up to date**
Particular emphasis upon:
*   It should be an individual's decision as to whether assessment information is included or shared.
*   The currency of the information held. Different views were expressed as to whether only the latest assessment should be held or whether history might inform decision making. What was universally agreed was that the information should be up to date and should perhaps include a future review date.
*   Could an individual challenge information?

**Concerns about Information overload**
Concerns were expressed that there was a fairly high risk of information overload.
Suggestions ranged from:
*   Flag that an assessment had been made, but with no detail
*   Summary information only
*   Summary, with link to detail

**Security and confidentiality 'need to know'**
*   Many comments reflected (or referred to) those in question 4 responses. This included access on a 'need to know' basis, with data only being shared if relevant to the service being delivered.
*   Two respondents commented on the high risk of information becoming available to third parties through coercion which might be detrimental to the individual, e.g. an abusive partner and suggested that this information should only be available to professionals.

**Risk of negative labelling of individuals**
*   Several respondents commented upon the risk of individuals being negatively labelled due to out of date historic information and the need to ensure that information accurately reflects the current situation.

**Avoidance of repetition and duplication**
*   Several comments identified a benefit being that this would reduce the number of times that individuals had to repeat information to different professionals, and for that information to be duplicated across services.

**Other comments**
Other notable comments included:
*   There should be individual and professional-entered assessments
*   A view was expressed that formulation (professional interpretation of results) was key; conversely the view was expressed that it was irrelevant as subjective
*   The assessment should be linked to an encounter
*   Avoid clinical jargon and make it easy for the individual to understand.

"As MIU practitioner/paramedic, having access to up-to-date ECG will help identify any new cardiac problems or confirm an existing problem normal for patient." *(AHP, primary care)*

"Mental health needs particular safeguards and should be considered separately." *(Person who uses services and Carer)*

"Assessments vary so widely, particularly the free text elements and lack of common assessment approach across health and social care. This will likely mean the key data for the front-line staff is in the free text, and the free text options will vary greatly. This makes commonality for sharing very difficult." *(Business Analyst, social care, local authority)*

#### 2.13 Q13. Relevant past medical, surgical and mental health history. The record of the person's significant medical, surgical and mental health history. Including relevant previous diagnoses, problems and issues, procedures, investigations, specific anaesthesia issues, etc (with obstetric history). Looking at the information below, is this all the information you need to share as part of the core information set about an individual's past pregnancy history?

Answered: 993 Skipped: 17

<p>///mermaid
xychart-beta
    title "Survey Responses (Highest Agreement)"
    x-axis ["Yes", "No", "Not sure"]
    y-axis "Percentage" 0 --&gt; 100
    bar [86.54, 1.79, 11.67]
	</p>
	
	

<table>
  <thead>
    <tr>
      <th>ANSWER CHOICES</th>
      <th>RESPONSES</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Yes</td>
      <td>72.91%</td>
    </tr>
    <tr>
      <td>No</td>
      <td>5.54%</td>
    </tr>
    <tr>
      <td>Not sure</td>
      <td>21.55%</td>
    </tr>
    <tr>
      <td><strong>TOTAL</strong></td>
      <td></td>
    </tr>
  </tbody>
</table>


*   21.55% were unsure whether the information we listed was all you need to share as part of the core information set about an individual's past pregnancy history.
*   No midwives said they weren't sure, 83.33 % approved the information categories we identified for sharing regarding past pregnancy.
*   84.48 % of nurses responded 'yes' and no mental health professionals said 'no'.

189 people left comments


A number of themes emerged from the qualitative analysis:

**Currency of data**
*   Historic data should have an end date to indicate when it is no longer a current episode or diagnosis.

**Why pregnancy specific?**
*   There was widespread questioning as to why past medical, surgical and mental health history was pregnancy-specific and not general.

**Security and confidentiality 'need to know'**
*   Many comments reflected (or referred to) those in Question 4 responses. Overwhelming responses that information should be accessed on a 'need to know' basis, with data only being shared if relevant to the service being delivered.
*   There was emphasis on the fact that some of this information is highly sensitive e.g. terminations, miscarriages, sexual health
*   Two respondents commented on the high risk of information becoming available to third parties through coercion which might be detrimental to the individual, e.g. an abusive partner.
*   A few respondents stressed that information should only be shared with persons' explicit consent.

**Information overload**
*   The potential for information overload was stressed and suggestions ranged from simply flagging that there was information to be found elsewhere, or providing summary information, potentially ranked by importance.

**Mental health history**
*   Several respondents stressed the need to include mental health history.

**Other comments**
Other notable comments included:
*   The information will reduce in importance as a woman ages.

#### 2.14 Q14. Pregnancy status. The pregnancy state relating to women. Should current pregnancy status be part of the core information set?

Answered: 984 Skipped: 26

<p>///mermaid

xychart-beta
    title "Survey Results"
    x-axis [Yes, No, Not sure]
    y-axis "Percentage (%)"
    bar [70.53, 7.32, 22.15]
	</p>



<table>
  <thead>
    <tr>
      <th>ANSWER CHOICES</th>
      <th>RESPONSES (%)</th>
      <th>COUNT</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Yes</td>
      <td>70.53%</td>
      <td>694</td>
    </tr>
    <tr>
      <td>No</td>
      <td>7.32%</td>
      <td>72</td>
    </tr>
    <tr>
      <td>Not sure</td>
      <td>22.15%</td>
      <td>218</td>
    </tr>
    <tr>
      <td><strong>TOTAL</strong></td>
      <td></td>
      <td>984</td>
    </tr>
  </tbody>
</table>


*   There were varying views on whether pregnancy status should be recorded.
*   All midwives who took part in the survey think current pregnancy status should be recorded in the core information standard, as do 95.24% of pharmacists.
*   Social care is split with 51.85 of social care professionals agreeing that current pregnancy status should be included and 37% 'unsure'.
*   No carers said current pregnancy status definitely should not be recorded, however 39.39% were unsure about it.

162 people left comments


A number of themes emerged from the qualitative analysis:

**Currency of Data**
*   The importance of this data being updated dynamically was stressed, particularly in the context of miscarriage.

**Only if pregnant**
*   There was widespread response emphasising that this information should only be held if relevant. In particular, respondents did not want to record if women were not pregnant.
*   It was observed that pregnancy status is relevant across many clinical settings and so was important to know.
*   It was also identified that this would be age-appropriate, and that data could be archived, e.g. post menopause.

**Security and confidentiality 'need to know'**
*   Many comments reflected (or referred to) those in question 4 responses. Overwhelming responses that information should be accessed on a 'need to know' basis, with data only being shared if relevant to the service being delivered.
*   Two respondents commented on the high risk of information becoming available to third parties through coercion which might be detrimental to the individual, e.g. an abusive partner.
*   A few respondents stressed that information should only be shared with persons' explicit consent

**Importance for prescribing**
*   Several respondents commented upon the importance of this information for prescribing, including post birth.

#### 2.15 Q15. Correspondence This is a section where any correspondence relating to the person can be stored. Should the core information set include correspondence such as outpatient letters or letters from patients?

Answered: 997 Skipped: 13


<p>///mermaid

xychart-beta
    title "Survey Results"
    x-axis [Yes, No, Not sure]
    y-axis "Percentage (%)"
    bar [67.60, 9.63, 22.77]
	</p>
	

<table>
  <thead>
    <tr>
      <th>ANSWER CHOICES</th>
      <th>RESPONSES</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Yes</td>
      <td>67.60%</td>
    </tr>
    <tr>
      <td>No</td>
      <td>9.63%</td>
    </tr>
    <tr>
      <td>Not sure</td>
      <td>22.77%</td>
    </tr>
    <tr>
      <td><strong>TOTAL</strong></td>
      <td>997</td>
    </tr>
  </tbody>
</table>


*   People using services and clinical participants had similar responses with approximately 60% of these groups indicating that they think correspondence should be included in the core information standard.
*   Social care professionals were less sure, 56% agreed that correspondence should be shared.
*   Vendor representatives, NHS administration and management and pharmacy were keener for correspondence to be shared with 70%-80% of people suggesting it should be included in the core information standard.

Only 42.42% of carers said 'yes', 48.48% said that they were not sure about including correspondence in the core information standard.

**226 people left comments**



A number of themes emerged from the qualitative analysis:

**Is correspondence 'core'?**
*   Some respondents felt that correspondence was vital whilst others felt it was not 'core' information.
*   Some expressed the view that all relevant information would be coded on the clinical system and so the source should not be required.
*   A general consensus was that routine correspondence such as appointment letters should not be included.
*   If correspondence is included, it would need to be indexed, structured and dated.

**Security and confidentiality 'need to know'**
*   Many comments reflected (or referred to) those in question 4 responses. This included access on a 'need to know' basis, with data only being shared if relevant to the service being delivered.
*   Many correspondents identified that individual consent should be required.

**Information overload**
*   Many respondents commented on the particular risk of information overload if they needed to wade through correspondence in search of information. Some suggested summary information should be held.

**Third party information**
*   Several respondents identified the risk that third-party information might be included in correspondence and this had legal implications.

"This is one of the most valuable features of a care record, especially when the development of the record is in its infancy. If you watch a doctor in out-patients with a fat set of paper records the first thing they do is turn to the last letter to the GP or the last discharge summary. These records summarise the care so far and are an excellent starting point for the current consultation." *(Retired GP, primary care)*

"Too wide a topic and an overwhelming amount of data could end up being shared that no clinician would have the time to wade through. The key data points should be covered in the other elements of the information set. I suggest seeing how long it would take to wade through just 20 documents to find out if there is any valuable data and consider the reality of this in clinical practice. Even with advanced document management structures and advanced searching capabilities based on character recognition this task just will take too long for most clinical scenarios." *(Solutions management with focus on population health management and interoperability, third party supplier)*

##### 2.16 Q16. Safeguarding The following table of information is taken from the safeguarding and risks section of the core information standard. Should the core information set include details of historic (now closed) child protection plans? (A child protection plan acts to keep a child safe from abuse and neglect).
Answered: 998 Skipped: 12

<p>///mermaid
xychart-beta
    title "Survey Results"
    x-axis [Yes, No, Not sure]
    y-axis "Percentage (%)"
    bar [69.54, 7.11, 23.35]
	</p>


<table>
  <thead>
    <tr>
      <th>ANSWER CHOICES</th>
      <th>RESPONSES (%)</th>
      <th>COUNT</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Yes</td>
      <td>69.54%</td>
      <td>694</td>
    </tr>
    <tr>
      <td>No</td>
      <td>7.11%</td>
      <td>71</td>
    </tr>
    <tr>
      <td>Not sure</td>
      <td>23.35%</td>
      <td>233</td>
    </tr>
    <tr>
      <td><strong>TOTAL</strong></td>
      <td></td>
      <td>998</td>
    </tr>
  </tbody>
</table>


*   All midwives think that the core information set should include details of historic child protection plans.
*   Nurses and mental health professionals were keen to include historic plans with 85% and 83% responding 'yes'.
*   Only 50% of pharmacists and 58% of carers think historic plans should be included.

198 people left comments



**Differing views**
*   Historic information should not be held.
*   Historic information should be held but for a limited time; between one to 10 years or on reaching adulthood (although some individuals may wish for the history to be held).
*   A safeguarding flag could indicate that there had been a child protection plan (CPP) and the professional could find the information elsewhere (this was one of the most popular views).
*   There could be a link to the historic CPP.
*   An abridged version could be held.
*   The historic CPP should remain as it may influence future care decisions.

**Security and confidentiality 'need to know'**
*   Many comments reflected (or referred to) those in question 4 responses. This included access on a 'need to know' basis, with data only being shared if relevant to the service being delivered.
*   Many correspondents identified that individual consent should be required.

**Vulnerable adults**
*   Many respondents expressed the view that safeguarding should extend to vulnerable adults.

**Overlap with risks / alerts**
*   Several respondents observed that there seemed to be an overlap with risks / alerts.

"This is already covered by the Child Protection Information Service. Every clinician with a valid need should have access to this service (not just in urgent care as it is available currently)" *(Person using services)*

"50% of safeguarding alerts to my (adults) team in social services are closed as not meeting s42 Care Act. 2/3 of those that do are minor, and the risk has been managed/ eliminated even before the report is made. I feel that only serious or ongoing concerns should be recorded" *(Social care professional, local authority)*

"Extensive training is required for good quality safeguarding recording and responding - is this issue and the risk of recording and responding (not responding) built into this transformation - the information cannot just be shared into already under skilled and overloaded health and care services" *(Specialist midwife for change and transformation, multi-sector partnership)*

#### 2.17 Q17. Should disability be included as a separate section in the core information set?
(Mobility, cognitive and accessibility disabilities are currently recorded in individual requirements).

Answered: 993 Skipped: 27

<p>///mermaid
xychart-beta
    title "Survey Results"
    x-axis [Yes, No, Not sure]
    y-axis "Percentage (%)"
    bar [64.29, 14.65, 21.06]
</p>


<table>
  <thead>
    <tr>
      <th>ANSWER CHOICES</th>
      <th>RESPONSES (%)</th>
      <th>COUNT</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Yes</td>
      <td>64.29%</td>
      <td>632</td>
    </tr>
    <tr>
      <td>No</td>
      <td>14.65%</td>
      <td>144</td>
    </tr>
    <tr>
      <td>Not sure</td>
      <td>21.06%</td>
      <td>207</td>
    </tr>
    <tr>
      <td><strong>TOTAL</strong></td>
      <td></td>
      <td>983</td>
    </tr>
  </tbody>
</table>


*   All midwives thought that disability should be included as a separate section of the core information set.
*   Of all the other groups between 60 – 67 % said they think disability should be included as a separate section.
*   Despite 64.29% of respondents answering 'Yes', the overwhelming view of respondents was that it was very important that the data was included but that it should be part of 'about me' and 'individual requirements' rather than a separate section.
*   Several expressed the view that individuals don't want to be labelled by impairments.
*   A small number of respondents felt that it should be separate so that it was quickly and easily accessed, rather than perhaps looking through textual information which might be time consuming.

**154 people left comments**



A theme emerged from the qualitative analysis:

Security and Confidentiality 'need to know'
*   Many comments reflected (or referred to) those in Question 4 responses. This included access on a 'need to know' basis, with data only being shared if relevant to the service being delivered.

"This information often gets overlooked or swamped by a medical model of care. It is important in its own right." *(OT in Oncology + palliative Care in an Acute NHS Hospital Trust)*

"Support requirements should definitely be shared (the NHS England Learning Disability and Autism Forum told us this). The disability diagnosis is less important- some people want to share this, some people don't. So, things like adjustments to information, access, environment, treatment etc" *(Public engagement manager for learning disability and autism)*

"As a disabled person with multiple health conditions managing their own care, I can't access this at the moment and it would be so helpful to me if I could." *(Patient)*

#### 2.18 Q18. End of life This is the 'End of life' section in the draft core information standard.
Please read through the contents and answer the question below. Is this all the information needed for end of life care as part of the core information set?

Answered: 994 Skipped: 16

<p>///mermaid
xychart-beta
    title "Survey Results"
    x-axis [Yes, No, Not sure]
    y-axis "Percentage (%)"
    bar [69.11, 6.74, 24.14]
	</p>


<table>
  <thead>
    <tr>
      <th>ANSWER CHOICES</th>
      <th>RESPONSES (%)</th>
      <th>COUNT</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Yes</td>
      <td>69.11%</td>
      <td>687</td>
    </tr>
    <tr>
      <td>No</td>
      <td>6.74%</td>
      <td>67</td>
    </tr>
    <tr>
      <td>Not sure</td>
      <td>24.14%</td>
      <td>240</td>
    </tr>
    <tr>
      <td><strong>TOTAL</strong></td>
      <td></td>
      <td>994</td>
    </tr>
  </tbody>
</table>


*   78% of clinical respondents think that we have included all the end of life information needed for the core information set.
*   68% of allied health and social professionals think the information we have included is correct.
*   59% of carers and 62% of patients are happy that we have included all the information needed for end of life care, as part of the core information set.

**212 people left comments**



A number of themes emerged from the qualitative analysis:

**Person-centred**
* The observation was made that this should be more person-centred. There is a section for
professional comment but not for individual or family comment. There is also a need to know
whether the family has been involved in or is aware of preferences.
**Timeliness of data**
* There is a need to ensure that this data is the most up to date and is accurate; DNR decisions
can change and erroneous data could result in a death.
**Estimated prognosis**
* Several respondents felt that this should not be included due to the fact that it is often
inaccurate.
**Hospices and organisations that support end of life care**
* There will be a requirement to share this data with hospices and organisations that support end
of life care. 
                      

**Person-centred**

*   The observation was made that this should be more person-centred. There is a section for professional comment but not for individual or family comment. There is also a need to know whether the family has been involved in or is aware of preferences.

**Timeliness of data**

*   There is a need to ensure that this data is the most up to date and is accurate; DNR decisions can change and erroneous data could result in a death.

**Estimated prognosis**

*   Several respondents felt that this should not be included due to the fact that it is often inaccurate.

**Hospices and organisations that support end of life care**

*   There will be a requirement to share this data with hospices and organisations that support end of life care.

"You may also want to consider wishes for organ donation/medical research" *(Business and performance lead, mental health/ learning disability hospital)*

"Should it reference a RESPECT form if completed or other recognised end of life plans." *(Person using services)*

"This is a section where the person really could contribute and make their wishes known end of life wishes, e.g. food/drinks places and people music and light/comfort Living will could be attached. Continuing healthcare status DST attached Donor status also could be included, e.g. organs and preferences crematorium /burial funeral plans if no next of kin." *(OT, community care)*

#### 2.19 Q19. Do you have any comments you would like to add before submitting the survey?

Answered: 253 Skipped: 757

A number of themes emerged from the qualitative analysis:

##### Information governance
There is extensive concern about information governance in terms of:
*   What exactly are the rules?
*   Will access be restricted to role-based 'need to know'?
*   How secure and confidential will data be? There is a real concern that data will be hacked or will be sold to third party organisations for profit which will be to the detriment of the individual
*   What control will individuals have over giving consent for access in a flexible way; will they be able to give consent for some access but opt out for others?
*   Will individuals be able to correct or comment on information?
*   Will individuals have access to and control of all their data 'nothing about me without me'?
*   What, if any, plans are there to anonymise data and use for public health research and analysis?
*   A particular concern is that if individuals are not confident that data is secure they may withhold private and sensitive information which may increase the safety risk.

##### Information is up to date
*   The need for data to be kept up to date was consistently raised across many sections, in particular risks and alerts, and the risk of individuals being negatively labelled.
*   This was raised as a particular risk for DNR information. An individual's preferences may change as their situation changes and so having the most up to date information is vital. It is also essential that the information is verified as correct.
*   The question was raised as to who would have responsibility for ensuring information was up to date and accurate, particularly where data might be extracted from more than one source system.

##### Information overload
*   If user interface is not well-designed, there is a risk of information overload and not getting to the required information effectively and efficiently; this will require role-based access design.

##### Ambitious scope
*   Some concerns were raised that the scope of the standard is too ambitious and is more encompassing than 'core'; this requires widespread communication of the core information narrative.

##### Person held data
*   Although not a 'theme' as such, a couple of respondents raised the suggestion that the patient should have a card with their data stored upon it which they should take with them to interactions.

"The standards overall don't address concerns about the scope of access across a wide range of health and social care agencies. What happens when people don't wish for more sensitive information (e.g. HIV status, trauma history, domestic violence, details of therapy sessions) to be widely and readily accessible to all health/ social care professionals involved in their care?" (Consultant clinical psychologist, community care)

"The accuracy and pertinence of this data could become a burden on healthcare professionals. There is no guarantee that any records will be maintained and utilised correctly. Not having access to accurate and timely healthcare records can hinder treatment and increase harm. However the task to standardise this across so many systems and individuals is gargantuan." (Pharmacist, primary care)

"I work in the Out of Hours setting and often meet patients and their families for the first time before
having to make complex decisions about their on-going care. Having access to all of the above, in
an accessible format, would improve their care considerably.” (GP, urgent care services)

### 3 Conclusion

The findings detailed in this report have been synthesized and summarised in the core information standard final report, together with recommendations. Suggestions for additional requirements for the core information standard have been considered for inclusion in this release or future releases of the standard.

Core information standard: CORE INFORMATION STANDARD IMPLEMENTATION GUIDANCE

6.1 End of life care