NHSE SD > Core Information Standard @ 286841

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.

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.

About this standard

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.

The standard will enable health and care professionals to:

view a consolidated medication record
run algorithms where there may be gaps in care
identify individuals at risk
proactively notify other health and care professionals

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.

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.

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.

Scope

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.

It defines:

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 Care 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 draw from for their own local sources depending on local requirements. Local implementers may add to the core information.

The Core Information Standard is 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 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 physical data model – 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 – this 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, the depth of history and how the information is viewed/accessed 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.

How it works

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.

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.

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. View the report

The changes made, in April 2026, to the PRSB Core Information Standard relating to sex and gender were undertaken as a response to Professor Alice Sullivans report Independent review of data, statistics and research on sex and gender - GOV.UK, which noted safety issues in data sets and clinical records managed both by NHSE and PRSB. The work was agreed alongside Prof Sullivan herself, and implemented by the PRSB into their core standard earlier this year.

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This standard needs to be reviewed and implemented alongside:

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SNOMED CT

Url:

https://standards.nhs.uk/published-standards/snomed-ct

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## Acknowledgements ### The Professional Record Standards Body The independent Professional Record Standards Body (PRSB) was registered as a community interest company in May 2013 to oversee the further development and sustainability of professional record standards. Its stated purpose in its Articles of Association is: “to ensure that the requirements of those who provide and receive care can be fully expressed in the structure and content of health and social care records”. Establishment of the PRSB was recommended in a Department of Health Information Directorate working group report in 2012. ### Copyright You may use and re-use the information featured in this document (not including logos or images) free of charge in any format or medium, under the terms of the Open Government Licence. Any enquiries regarding the use and re-use of this information resource should be sent to: [support@theprsb.org](mailto:support@theprsb.org). Where we have identified any third party copyright material you will need to obtain permission from the copyright holders concerned. Information and content © PRSB 2019 Professional Record Standards Body 7 - 145 Great Dover Street, London, SE1 4YR [www.theprsb.org](http://www.theprsb.org) Community Interest Company No 8540834 ### Revision History

Version	Date	Summary of Changes
1.0	10/07/2019	Publication version
1.1	25/10/2019	Updated sections: purpose of document; pregnancy status guidance
1.2	19/03/2020	Update to guidance for ‘sex’ and ‘gender’ following a series of calls with NHS Digital.
1.4	19/08/2021	Updated due to updated to core information standard v2
2.0.1	28/04/2026	Sex and gender section updated.

### Reviewers This document was reviewed by the following people:

Reviewer name	Title / Responsibility
PRSB Assurance Committee	PRSB Assurance Committee
Helene Feger	Director of strategy, communications and engagement, PRSB
Lorraine Foley	CEO, PRSB
Martin Orton	Director of Delivery & Development, PRSB
John Farenden	Senior Programme Lead, Architecture Team, NHS England
Gareth Thomas	Greater Manchester LHCR Clinical Lead, Consultant in Intensive Care Medicine and Anaesthesia Group Chief Clinical Information Officer Senior Responsible Officer, Integrating Care Locally Programme

### Approved by This document was approved by the following:

Name	Date	Version
Project Board	26/06/19	0.1
PRSB Assurance Committee	11/07/19	0.3
Dr John Robinson, Clinical Safety Officer	19/12/2019	1.2

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### Glossary of Terms

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

Information Components	Model Description
Section	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: ‘Legal information’ includes a set of independent elements or information items, grouped in a logical section. ‘Medications and medical devices’ includes sets of related elements with dependencies between the elements.
Record entry	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.
Cluster	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.
Element	The data item. An element can appear in one or more sections e.g. name,
Information model rules and instructions	Explanations
Description	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.
Cardinality	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: 0……* = zero to many record entries are allowed 0……1 = zero to one record entry is allowed 1……1 = one record is expected 1……* = one to many records are expected For example, the ‘Medications and medical devices’ section may have zero to many medication item records in it and is displayed as 0……*.
Conformance	Conformance defines what information is ‘mandatory’, ‘required’ or ‘optional’ and applies to sections, record entries, clusters and elements. 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. The following set of rules apply to enable implementers to cater for the end users (senders and receivers) requirements: Mandatory – the information must be included Required – if it exists, the information must be included Optional – a local decision is made as to whether the information is included 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. 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. Assessment Section – Required – i.e. its important information you must include if you have it. 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. Assessment elements – Conformance set on the normal basis of which elements for an assessment are mandatory, required or optional. NB: It is permitted to upgrade a conformance rule but not

Valuesets	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.

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## Final report NOV 2020

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### Acknowledgements #### The Professional Record Standards Body The independent Professional Record Standards Body (PRSB) was registered as a community interest company in May 2013 to oversee the further development and sustainability of professional record standards. Its stated purpose in its Articles of Association is: “to ensure that the requirements of those who provide and receive care can be fully expressed in the structure and content of health and social care records”. Establishment of the PRSB was recommended in a Department of Health Information Directorate working group report in 2012. #### Copyright You may use and re-use the information featured in this document (not including logos or images) free of charge in any format or medium, under the terms of the Open Government Licence. Any enquiries regarding the use and re-use of this information resource should be sent to: support@theprsb.org. Where we have identified any third party copyright material you will need to obtain permission from the copyright holders concerned. Information and content © PRSB 2019 #### Professional Record Standards Body 7 - 14 Great Dover Street, London, SE1 4YR www.theprsb.org Community Interest Company No 8540834 #### Revision History

Version	Date	Summary of Changes
1.0	10/07/19	Publication version
1.1	31/07/19	Changes following feedback
1.2	08/11/20	Minor changes to wording and addition of planned review date & route for user feedback, following comments from RCN as part of continued endorsement process.

#### Reviewers This document was reviewed by the following people:

Reviewer name	Title / Responsibility
PRSB Assurance Committee	PRSB Assurance Committee
Helene Feger	Director of strategy, communications and engagement, PRSB
Lorraine Foley	CEO, PRSB
Martin Orton	Director of Delivery & Development, PRSB
John Farenden	Senior Programme Lead, Architecture Team, NHS England
Gareth Thomas	Greater Manchester LHCR Clinical Lead, Consultant in Intensive Care Medicine and Anaesthesia Group Chief Clinical Information Officer Senior Responsible Officer, Integrating Care Locally Programme

#### Approved by This document has been approved by the following:

Name	Date	Version
Project Board	26/06/19	0.8
PRSB Assurance Committee	11/07/19	0.10

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#### Glossary of Terms

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

**Planned Review Date and Route for User Feedback** The next maintenance review of this document is currently being planned and commissioned, but is likely to be in March 2021. This is subject to agreement with NHS Digital as the commissioning body. Please direct any comments or enquiries related to the project report and implementation of the standard to support@theprsb.org

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### 1 Executive Summary People want to see the benefits that digital information sharing can bring embraced by health and social care, just as they’ve seen them in other parts of their lives. The NHS and social care are poised to transform care for each of us from birth to the end of life, and using information and technology better is central to these changes. Deciding what information should be shared between the NHS, social care and people who use services and how it can be shared safely is fundamental. The PRSB was commissioned by NHS England to define the information that should be shared, called a ‘core information standard’, by consulting widely with people who use services, health and care professionals. As a UK-wide body, PRSB consulted on the standard across the four nations, because people’s health and care is provided across geographical boundaries and the information needed to provide safe, high quality care should follow the person. The standard defines a set of information that may be shared between systems in different sites and settings, and 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. Its use will be decided locally; the Local Health and Care Record (LHCR) localities, under NHS England’s LHCR programme, will set plans to adopt it early. After that, the standard will be rolled out nationally and can be used across the UK. The project was carried out in two phases: the first phase reviewed evidence from existing standards and shared care records in order to produce a draft core information standard. The second phase of work developed the standard in key areas where it was seen that further work was needed (e.g. mental health and social care). The PRSB carried out broad and deep consultation and engagement across health and social care using online workshops, a national deliberative workshop, social media (to obtain more diverse input from the public), expert reviews, an online workshop for vendors and an online survey. This allowed the content of the information standard to be refined and started to build awareness and support among all the key groups with an interest in information sharing in health and care. The core information standard (Appendix B) is being formally endorsed by royal colleges and professional bodies and incorporated locally by vendors and LHCRs in their systems; at a national level incentives will also encourage wider adoption. Defining a core information standard for use in shared care records is complex, important and challenging work, not only because of the scale of the information it contains but also because of the effects it might have when used. Though there was strong support for the benefits that sharing a wide range of care information would bring, there were also a wide range of views and concerns raised by professionals and users of services alike. The report details the issues raised during the consultation and makes recommendations which should form essential reading for any organisations creating shared care records. These include: implementation and usability, information governance and safeguarding, ownership and control of data, data quality and accuracy, professional best practice and training, the effect on person-centred care, and addressing potential barriers to sharing information between health and social care. The findings are as follows: * There is strong support for shared care records which are seen as improving accessibility, transparency and the relationship between professionals and users of services; people believe they will drive up the quality and safety of care and support self-management. But there is also confusion about how shared care information will work in practice; people who use services doubted they would be able to influence and control use of their data and professionals were concerned about information overload and usability. Some professionals also expressed concern about having access to less information through the loss of valuable existing systems as they are replaced by local shared care records. * Many people told us that using the core information standard will be challenging given the huge variation in the uses for the information it contains. They said that this should not be treated as just a technical exercise but needs to address how people want to use the information in the future. Designing systems with users so that information is usable, accessible and relevant is vital, people told us. Concerns were raised about data quality and keeping timely and accurate information in such a complex, information-rich world. People said there is a need to be clear about what is good professional practice in recording information, for example diagnoses and problems, and they should make sure that the meaning of data isn’t lost or changed when information is extracted from clinical records and shared. Training was said to be essential so that every system user is familiar with how to store, access, retrieve and use the data. * Everyone strongly supported a person-centred approach to care and agreed that the ‘About Me’ information is critical to good care. People believe that better information sharing using the standard and shared care records could lead to a major change in the way professionals and people using services work together. However, there were also concerns raised about ownership and control of the information in care records. People said the ‘About me’ section lets them contribute important information about themselves. They also said they wanted to be able to comment on or edit information in their record and they wanted to be sure that the information they enter is acted on to improve their quality of life and their own ability to care for themselves. People said that data from mobile devices like Fitbits and mobile apps should be shared as it will also play an important part in people looking after themselves better and watching for signs of illness. Professionals questioned who would check and act on this data and they raised safety concerns should data be missed and not acted on; they also questioned how they would know whether the data is correct. * People told us they want to be sure that their health and social care information will be held safely, that they will be asked to consent to sharing their information and that it will only be viewed when it is necessary for care. They want to know that audits will be in place to check who has viewed their information and any breaches will be reported to them promptly. * People said that social care information involves a wide range of professionals and settings and that the culture and language differ from healthcare, which can create barriers to sharing. For example, social care is moving away from using computer-readable information towards more descriptive information about the person, whereas healthcare is moving toward using more computer-readable information. This will make sharing more complex and possibly difficult. * People said it was helpful that the core information standard draws on existing standards and system suppliers have already used many of its parts. However, people also said areas were missing from the core information standard that should be looked into further investigation, for example community, dental, optometry, screening, self-reported data and genetic data. The PRSB has made the following important recommendations in six key areas as follows: * A strong narrative that tells professionals and the public about the important gains to be made from sharing care information is needed. This should support a unified national programme of consultation and engagement to build understanding and win trust in how shared care records will be used in future. This is key if clinical, professional and public engagement in shared care records is to deliver benefits. * Use of the core information standard needs national and local actions and must involve the professionals using the information, people who use services and system suppliers. At a national level, this could include using levers and incentives such as issuing an Information Standards Notice (ISN) or working with regulators to include the standard in their regulation of health and care. At a local level, each LHCR localities should work with vendors to test different uses of the core information standard to address any barriers to its use. The right professionals should be involved in the testing to ensure that systems provide the information they need in a way that is most useful. Where technical standards are needed to support sharing information, clinicians and professionals should be involved to make sure that they work for the user and are consistent with the PRSB information model. Further work should be commissioned to clearly describe good clinical practice in recording diagnoses and problems. * More work is needed to understand what further information, not currently included in the core information standard, people want to share with professionals, for example health data from mobile devices, and how it could be used to improve health and care. Further work is also needed to better understand the benefits and effects of people accessing and contributing far more information to their health and care records, including more work on the ‘About me’ section, as information is more widely shared. The policy, strategy and safety issues that might arise from this should be addressed nationally so that local differences can be avoided. This should include work with NHS England’s Personalised Care team and a LHCR to pilot use of a personal health record and measure its impact on users and professionals in line with local uses based on real-life scenarios. * The core information standard should be reviewed in relation to the NHS England’s Information Governance Framework, once complete. A narrative is needed that describes how the Information Governance Framework will work in a way that can be understood by professionals and the public. The framework should be tested in practice by the LHCRs, along with the core information standard, so that we can identify and resolve any barriers and prove that it works. * A clear plan should be developed that sets out further engagement and consultation with social care professionals and service users across adult and children’s social services and care providers to make sure that the shared information that is needed by social care professionals form part of the core information standard. This should build on existing links with the Local Government Association, NHS Digital Social Care programme and The Society for Information Technology Management (SOCITM). * Work should be commissioned to develop the core information standard further in areas where there are gaps. Also, a UK-wide metadata standard (a standard about data itself) for documents and images should be agreed and applied to the core information standard. PRSB should review existing standards and align these to the new core information standard. The core information standard that we have defined here is a reference framework for driving integrated care. Its development was prompted by the Local Health and Care Record programme but it is a major asset for digital information sharing generally. The core information standard is the product of collective efforts of clinicians, professionals, vendors and people who use services. The proof of its usefulness and usability will come through trialling it in practice, refining it and overcoming barriers so it can be adopted widely for the benefit of professionals and the people they serve.

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### 2 Background

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#### 2.1 Introduction The changes planned in health and social care over the next decade – from reducing premature births to helping people live healthier, longer and more independent lives – are all underpinned by better use of information and technology to improve care. In order to realise these benefits, we need to agree what information should be shared and deploy systems that will talk to one another across health and social care, with the right safeguards in place. There are currently in excess of sixty local shared care records in operation across the country. NHS England has established a programme, the Local Health and Care Records (LHCR) programme, to expand the coverage of local shared care records to cover larger populations. This will make important information available to health and care professionals and people using services across wider geographic areas, covering populations of three to five million, to improve the quality of care and care co-ordination. The information will be brought together for individuals across the health and care settings in selected geographic areas, known as localities, to support integrated pathways of care, in the form of shared care records. The records will be accessible to people who use services, and authorised professionals and carers who need to see the record to provide care. They will not include all information about the person and will not remove the professional responsibility to verify the information with the person. Although the primary focus of shared care records is to support direct care, a secondary objective is to be able to utilise de-personalised information in support of population health analysis and research. Collecting data covering populations of three to five million will enable signification analytic and research opportunities. Despite the shared care records covering large geographic and population sizes, movement of patients and citizens across boundaries will still take place and information will need to be shared across boundaries to support their care. Sharing information between organisations and across geographic boundaries requires that the information can be captured and shared in a standardised way and that the meaning and context of the information is maintained as it is shared. Sharing the information in a standardised way requires the development and use of information and technical standards. NHS England set out initial expectations for the type of information that should be part of a core set of information (Appendix A datasets) and commissioned the Professional Record Standards Body (PRSB) to test this and seek consensus on what information should be shared. The PRSB is working with citizens and health and care professionals to define this in an initial ‘core information standard’. It is imperative that the core information standard has local buy-in and based on local needs, but with national consensus. To achieve local ownership and national consensus, a rigorous consultation approach involving national multi-disciplinary engagement and local engagement through local networks was key. This work has resulted in a national core information standard to support shared care records based on the initial agreed scope, namely that of direct, individual care. It is now expected that the technical specifications will be developed and localities will be expected to establish a plan to migrate towards the agreed standard.

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#### 2.2 The Core Information Standard ##### How much information should be shared? In the future, digital advances mean that most, if not all, information related to a person's health and care can be shared with care professionals and citizens themselves. This is subject to being able to demonstrate that there is a legal, justifiable need to share for the benefit of the individual. We are some way from this goal today so we need to start with a modest set of core information that is a realistic and achievable goal for most health and care systems over the next few years. The core information standard will include important information from a range of sources including primary, secondary and specialist care as well as social care and information contributed by individuals themselves. In consultation with professionals and citizens on what a standardised set of core information should include, it is clear that achieving wide scale adoption over time of even a modest set of information that can be shared between information systems would deliver profound improvements in the quality, safety and efficiency of care. ##### The core information standard

///mermaid graph TD subgraph Sharing P["fa:fa-user-circle Person: About me, preferences"] --> Core MH["fa:fa-leaf Mental health/community: Meds, assessments, care plans, admissions, discharges"] --> Core H["fa:fa-hospital-alt Hospital: Meds, allergies, admissions, discharges, assessments, procedures"] --> Core LGS["fa:fa-home Local government social services: Assessments, care packages, social context"] --> Core CP_S["fa:fa-hand-holding-heart Care providers: Care plans"] --> Core GP_S["fa:fa-stethoscope GPs: Meds, problems, allergies, care plans, investigations/requests and results"] --> Core NS["fa:fa-globe National systems: PDS, NRLS"] --> Core end subgraph Core Information Core[fa:fa-database CORE INFORMATION FOR A PERSON] end subgraph Viewing Core --> PC["fa:fa-user-circle Person/carer: Full information"] Core --> SHP["fa:fa-user-md Specialist healthcare professionals: About me, preferences, care plans, medications, allergies, care provision"] Core --> UE["fa:fa-ambulance Urgent and emergency care: Demographics, medications, allergies, problems, About me, preferences, care provision"] Core --> SCP["fa:fa-handshake Social care professionals: About me, preferences, problems, admissions, discharges"] Core --> CP_V["fa:fa-hand-holding-heart Care providers: About me, preferences, medications, discharges"] Core --> GP_V["fa:fa-stethoscope GPs: About me, preferences, care provision, assessments, care plans, discharges, medications"] end

The diagram above shows examples of information that may be sourced from different settings and the different views of the information that may be required for different professionals in different roles. 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. Which components of core information are accessed and used will be different depending on: * Who you are, e.g. an A&E consultant, a GP, a physiotherapist, a person accessing their own records. * The situation, e.g. a crisis or emergency situation, being discharged from hospital to a care home, managing a long-term condition. * The wishes of the person the information concerns regarding who should have access to their information, e.g. an individual may object to their information being shared. How these different views of information are physically presented in systems will be dependent on system vendors and local implementers. It should ensure that the required information is presented in a way that is useful and usable and supports professionals to do their work efficiently and safely and citizens to access the information they need to manage their own care. The core information standard will provide a framework which local health and care systems can reference and move towards over time, according to their local priorities and capability to innovate and change at a speed that makes sense for them, and recognising the maturity of local source systems and their ability to interoperate. The core information is a baseline, and it is expected to evolve and grow as we learn from its practical application and use.

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#### 2.3 Project governance The national LHCR Programme has a specific work stream dealing with health and care professional engagement. That work stream, overseen by the LHCR Health and Care Professional Group (HCPG) was originally chaired by the NHS England National Medical Director. At the time of writing this is transitioning to Dr Simon Eccles, the NHS Chief Clinical Information Officer. The work stream has established several projects including this one to define the core information standard. This project was commissioned by NHS England on behalf of the HCPG. This project was led on behalf of the LHCR HCPG by the Greater Manchester LHCR clinical lead, Dr Gareth Thomas, who is also the Senior Responsible Owner of the national interoperability programme. The core information standard had its own project board. Throughout the course of the project, John Farenden, NHS England, represented the project at the national LHCR programme board.

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### 3 Approach

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#### 3.1 Overall approach The project was conducted according to the PRSB process and assurance criteria.

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#### 4.5 Consultation methods and approaches The following methods were adopted: **Consultation on areas requiring further development and analysis** * Evidence review, research and analysis of topic areas of the information standard identified as needing further work. * Interviews with subject matter experts. * Citizen focus group for people who use services and their carers. * Webinars to draw together findings and build consensus with the topic specialists and a general audience. * Social care topic included consultation with local authorities via SOCITM and engagement with the Care Provider Support Service network. The particular themes and consultation questions tested in the focus group and webinars can be found in Appendix G. The webinars held were as follows:

Topic	Date	Invitees
People using services and their carers	27/02/19	People who use services and their carers, clinicians and professionals
Social care	26/02/19	Social workers, carers, patients, health visitors and care home professionals.
Encounters, alerts, appointments and test orders	20/02/19	Technical architects, informaticians, clinicians and people who use services
Maternity and healthy child	26/02/19	Pregnant women, parents, midwives, obstetricians, gynaecologists, surgeons, paediatricians, paediatric nurses, genomics experts, social workers, health visitors, dieticians, dentists and other professionals from across health and social care.
End of life	19/02/19	Clinicians, palliative care nurses, carers, hospice professionals and other end of life care specialists
Mental health	26/02/19	Mental health professionals, carers and patients.

Webinar recordings are available here. Lists of attendees for these events can be found at Appendix H. **National consultation workshop** The output of the work on the topic areas identified above was consolidated within a next iteration of the core information standard and reviewed with professional and patient project leads leading to a version for consultation at the workshop. A national all-day workshop was held to test the draft standard and to address the consultation objectives and consider the content of the standard, implementation considerations and risks. The workshop included 70 participants with representation from the LHCR localities and a cross-section of clinical disciplines, social care, patients, carers and service user representative groups who valued the discussion, and different perspectives shared. Feedback from the workshop was extremely positive with most rating it 4/5 or 5/5.

"It was really good to hear the different perspectives and the tables were well balanced. Case studies were challenging and represented real world complexity."

Output from the workshop was discussed with the project advisors and the models updated informed by their review. This model was also shared with the NHS Digital terminology team to identify any SNOMED CT messaging requirements and reference subsets Discussion have been held with the terminologists and the value sets updated. The particular themes and consultation questions tested in the focus group and webinars can be found in Appendix I. A list of attendees can be found in Appendix J. **Online survey consultation** Building on the findings from the consultation webinars and workshops and the consultation objectives and themes, a survey was designed using Survey Monkey to reach the widest possible number of frontline professionals and patients, carers and service users or their representatives. The survey and accompanying consultation document were hosted on the Professional Record Standards Body (PRSB) website and the Clinical and Professional Advisory Group (CPAG), and promoted via the Royal College of Physicians, PRSB and partner organisations’ social media channels. The survey was sent to 1325 individuals, including PRSB advisory board representatives, patient and carer groups, royal colleges, specialist societies and other professional bodies in health and social care to distribute across their networks. Additionally, it was distributed to PRSB’s 708 newsletter subscribers, 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 groups such as the Pharmacy Digital Forum and Scottish Children’s Cancer and Leukaemia Group members. 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 survey ran from 1 April 2019 to 1 May 2019, with 1010 individuals participating. The survey responses were collated and analysed (both quantitatively and qualitatively) and have been used to inform the recommendations for this report. The survey report can be found [here](#). The survey design can be found at Appendix K. **Requirements Log** A requirements log was maintained to capture requirements identified from sources outside of the main consultation process (e.g. email). This, together with the webinar and workshop outputs were analysed to synthesise themes which emerged from consultation and identify new requirements. **Expert reviews** Following the consultation, the core information standard was reviewed by an expert group of informaticians and project advisors with a particular focus on resolving outstanding issues with the information model. There were two expert group review meetings, on 1 and 16 May 2019. Expert group participants are listed in Appendix L. The questions asked at the expert group meetings are included in Appendix M. Outputs from these meetings were fed directly into the information model and into the implementation guidance where necessary. **Supplier Webinar** Suppliers listed on the Health and Systems Support Framework were invited to a webinar on 8 May 2019 to discuss the core information standard and provide their views on the design, in particular in the context of any existing health and social care products which they offered, and future interoperability. The consultation questions are set out in Appendix N. Outputs from this webinar have been used to inform the recommendations in this report. Attendees at the supplier workshop can be found in Appendix O.

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### 9 Findings and Recommendations A summary of the recommendations can be found in the table below:

Recommendations
Professional and public engagement
1	Deliver a joined-up national programme of engagement with the public and health and care professionals covering the core information standard and how it will be used, information governance and implementation. This programme should develop a strong narrative about the important gains to be made from using shared information. The programme should draw on findings from this initial consultation work and support from PRSB’s member organisations as well as other national bodies to deliver clear and consistent messages through trusted channels.
Implementation
2	System levers and incentives should be considered. This could include issuing an Information Standards Notice (ISN) or working with regulators to incorporate the standard into their assessment regimes
3	LHCR localities should trial the core information standard alongside the Information Governance Framework. This will enable better understanding of the challenges of implementation, identify the need for refinement of the core information standard and enable the evaluation of the impact on ways of working to support a national rollout.
4	Address the concerns about information overload through work to identify what information different end user groups need to see in different situations. Working with key professional groups (e.g. A&E consultants) and vendors to develop a series of best-practise examples for key use cases will greatly enhance understanding and can also be used as a model for live implementation as required.
5	The development of a logical data model and technical messaging specifications (FHIR profiles) should be commissioned to enable the technical implementation of the standard. Clinical and professional input is required to ensure that the core information standard is correctly reflected in these technical specifications including addressing the clinical context concerns.
6	A further stage of the problem and diagnosis recording work should be commissioned to address the representation of diagnoses and the curation of problem lists.
7	Undertake a thorough assessment of the content of the Summary Care Record, and any other interfaces or records that may be retired as a result of the migration to local health and care records, against the core information standard to ensure no content is not lost as a result of the migration.
Person-centred record
8	More work is needed to understand what other information, not currently included in the core information standard, people want to share with professionals, for example health data from mobile devices, and how it could be used to improve care. Further work is also needed to better understand the benefits and effects of people accessing and contributing far more to their health and care records, including more work on the ‘About me’ section, as information is more widely shared. The policy, strategy and safety issues that might arise from this should be addressed nationally so that local differences can be avoided. This should include work with NHS England’s Personalised Care team and a LHCR to pilot use of a personal health record and measure its impact on users and professionals in line with local uses based on real-life scenarios.
Information governance
9	Align the core information standard with the Information Governance Framework when the work has concluded.
10	Develop a narrative that describes how the Information Governance Framework will operate in a way that is accessible and understandable to professionals and the public. The framework should be tested in practice by the LHCR localities, alongside the core information standard, to identify and resolve barriers and prove that it works.
Information sharing between health and social care
11	Develop a plan that sets out further engagement and consultation with social care professionals and service users across adult and children’s social services and care providers to ensure that the shared information requirements of social care professionals are reflected in the core information standard. This should build on existing links with the Local Government Association, NHS Digital Social Care programme and The Society for Information Technology Management (SOCITM).
Development of the core information standard
12	Develop a consensus-based metadata standard for documents and images for use across the four nations that can then be applied to the core information standard.
13	Scope a future programme of work, investigating the inclusion of the information content identified in the consultation as missing from the current version of the core information standard. Feedback should also be obtained from trialling the standard and incorporated into any future work programme.
14	PRSB should review existing standards in light of the development of the core information standard to align existing standards with this standard.

Consultees	Name
Cambridge University Hospitals NHS Foundation Trust	Afzal Chaudhry
CWP NHS Foundation Trust	Adrian Burke
Endeavour Health Charitable Trust	David Stables
Ex geriatrician, PRSB	Iain Carpenter
GP, PRSB	Phil Koczan
Greater Manchester Health & Social Care Partnership	Paul Moore
Hull and East Yorkshire Hospitals NHS Trust	Mark Simpson
Leeds Care Record	Julia Millman
Local Government Association	Mark Golledge
NHS Digital	Nicholas Oughtibridge
NHS Digital	Robert Jeeves
NHS Digital	Marian Tilley
NHS Digital	Keith Strahan
NHS Digital	Mark Nicholas
NHS Digital	James Palmer
NHS Dorset Clinical Commissioning Group	Andy Hadley
NHS England	Ian Townend
NHS South, Central and West Commissioning Support Unit (CHIE)	Peter Cambouropoulos
OneLondon	Jo Fulton
Patient advisor, PRSB	Laura Fulcher
Patient and Public Engagement Adviser PRSB, Expert Advisory Committee SCR	Judith Brodie
Patient Information Forum	Sophie Randall
Royal College of Nursing	Matt Butler
Salford Royal NHS FT	Scott Watson
Salford Royal NHS FT	Rebecca Fletcher
Salford Royal NHS FT	Tim Pattison
Sheffield Teaching Hospitals NHS Foundation Trust	Karen Selby
Southern Health NHS FT	Lisa Franklin
Surrey Heartlands (Surrey Care Record)	Kat Stolworthy
Thames Valley and Surrey Local Health & Care Records programme	Andrew Fenton
Tower Hamlets CCG	Bill Jenks
University of Portsmouth	Philip Scott
Yorkshire and Humber Care Record Programme	Lee Rickles

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### 14 Appendix E project advisors

Project Advisor Role	Name
General Practitioner	John Robinson
General Practitioner	Phil Koczan
Hospital Doctor	Iain Carpenter
Mental Health Care Professional	Matt Butler
Patient Lead	Laura Fulcher
Social Care Professional	Tommy Reay

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### 15 Appendix F project stakeholder groups Key groups of project stakeholders 1. Patients, carers, citizens and service users This primarily included representatives from the appropriate member organisations. 2. The LHCR teams This primarily included the members of the Clinical Advisory Group but also programme managers, other clinicians, patient representatives, representatives from social services, and clinical informaticians who we are directed to because of this work. Identification of stakeholders within the LHCR teams will occur after initial introduction to the clinical leads. 3. Key vendors This primarily included representatives from the appropriate member organisations. This would include system vendors supporting the LHCR localities and other key vendors (from the HSSF). 4. NHS Digital The national business and functional architecture team and terminology groups to ensure awareness of this work and alignment. 5. Public Health England Engagement to raise awareness of the project, to support future implementation. PRSB member organisations Academy of Medical Royal Colleges * Academy of Medical Royal Colleges * Royal College of Anaesthetists * Royal College of Emergency Medicine * Royal College of General Practitioners * Royal College of Obstetricians & Gynaecologists * Royal College of Ophthalmologists * Royal College of Paediatrics and Child Health * Royal College of Pathologists * Royal College of Physicians * Royal College of Psychiatrists * Royal College of Radiologists * Royal College of Surgeons **Allied Health Professional Federation** * Allied Health Professionals Federation * Allied Health Professionals Scotland * British Association for Music Therapy * British Dietetic Association * Chartered Society of Physiotherapy * Royal College of Occupational Therapists * Royal College of Speech and Language Therapists **Clinical** * British Orthodontics Society * British Psychological Society * Faculty of Clinical Informatics * Queen’s Nursing Institute * Resuscitation UK * Royal College of Midwives * Royal College of Nursing * Royal Pharmaceutical Society **Social Care** * Association of Directors of Adult Social Services * Association of Directors of Children's Social Services * Care Provider Alliance * Chief Social Worker * Community Practitioners and Health Visitors Association **Patient Organisations** * Compassion in Dying * National Voices * Patient Information Forum **Technology** * BCS Health and Care * HL7 UK * Institute of Health Records Information Management (IHRIM) * INTEROP en * Tech UK **Regulators** * National Institute for Health and Care Excellence (NICE) **Government** * Public Health England **Four Nations Governments** * Northern Ireland * Scotland * Wales **International** * eHealth Ireland **Other Stakeholder Organisations** * Association for Palliative Medicine * Association for Young Peoples’ Health * Association of Cancer Physicians * Association of Child and Adolescent Mental Health * Association of Paediatric Emergency Medicine * BCS Health * British & Irish Orthoptic Society * British Association of Perinatal Medicine * British Dental Association * British Geriatrics Society * British Medical Association * British Pharmacological Society * Carers Trust * Carers UK * Chief Information Officers Network * Coalition for Collective Care * College of Paramedics * Dementia UK * Diabetes UK * Faculty of Intensive Care Medicine * Four Nations Government NI * Four Nations Government Scotland * Four Nations Government Wales * Genetic Alliance * Genomics England * Hospice UK * International Alliance of Patients’ Organisations * LHCR Greater Manchester * LHCR London * LHCR Thames Valley and Surrey * LHCR Wessex * LHCR Yorkshire and Humber * Local Government Association * Macmillan Cancer Support * Mental Health Nurses Association * NHS Clinical Commissioners (NHSCC) & * NHS Digital * NHS Digital Vendor Network * NHS England * PRSB Advisory Board Nominee * RCP Patient Network * Royal College of General Practitioners Informatics Group * The Association of UK Dieticians Other Networks * Chief Clinical Information Officers Network

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### 16 Appendix G consultation themes and questions (focus group and webinars)

Aims	Participants	Consultation questions/themes
Citizen focus group
Understand needs, priorities and preferences of people	Focus group discussion with six to 10 people who use services and carers to understand their priorities plus, and multi-disciplinary professionals.	Participants were asked to complete examples of where they have experienced issues with information sharing and to propose solutions on how this could be improved. These were stuck to the walls and participants asked to identify key themes and solutions on post-it notes for each experience and these were then aggregated into common themes and proposals.
Ensuring the information enables and encourages greater self-management of care
People using services and their carers webinar
Understand needs, priorities and preferences of people ensuring the information enables and encourages greater self-management of care	Webinar with people who use services, their carers and multi-disciplinary professionals.	What would you like to contribute to your health & wellbeing information? If you had a section of information dedicated to you, what would be in it? How could this core information enable you to gain more autonomy and reduce the burden and anxiety of being a ‘patient’? How could the core information provide next steps in your treatment journey? How could the core information record what is most pertinent to you, and what you want to be dealt with?

| | | |---|---| | | What might you need to see from the past and how might that be helpful? e.g. past appointments, discharge summaries from previous admissions etc. | | | How could the core information facilitate better communication? | | | What information could you anticipate not wanting to share with a carer? | | | What support would you need to decide what information a carer should be able to see? | | | How could the core information support carers to fulfil their role? | | | How could the core information support carers to fulfil their role? | | | If you could access your results, how and when would you like to receive them? | | | What documents would you like to access? | | | e.g. Letters, scans, discharge summaries, results, pathology reports etc. | **Social care** | Identify what information should be stored, for what purpose and how in relation to social care. | Led by social care specialist advisor. Social care professionals, providers of care, people who use social care services and carers, as well as clinicians. | Social care professionals, providers of care and people who use services as well as clinicians were asked if data requirements of councils, home care agencies, nursing homes, residential homes and supported living schemes radically different from each other. What does the health-aspect of social care need from health and social care? Language-wise what is lost in translation between health and social care? Child social care information seems to focus on: • Safeguarding | Social care is a broad area with different needs for local authorities, care providers and domiciliary care. Working with LGA/SOCITM to elicit LA and Care Provider Support Service to identify needs of care providers. |

Flags e.g. team around the child, special educational needs etc.

What else should be included? How could the PRSB better engage with child social care providers? When someone stops receiving social care support, after closing the case what should remain in the core information? Should safeguarding be part of the core information? How much information should be available? How should disabilities be recorded? Should temporary disabilities be recorded? e.g. post-operative recovery, side-effects from treatment Do social care providers see value in including the primary support reason in the core information? Where could primary support reason sit as a data field? Should the core information include the details of organisations involved in supporting the individual:

If the organisation cannot access or add to the core information?

If there is no supporting context provided, e.g. team around the family (TAF), educational services? Should the core information include whether the individual is being supported by a local care initiative, which may not be relevant outside of their immediate area?

Mental Health

To identify elements of existing standards that should be included in the core	Led by MH specialist advisor, MHS professionals, BPS network	Five scenarios were shared with the mental health professionals, psychologists and users of services/carers during this consultation and the following questions were asked in regard to each:
		What information does this person need in this care setting? What’s missing from this picture/scenario? What else is there? What other benefits/ uses could there be?
Encounters, alerts, appointments and test orders
Identify what information should be stored, for what purpose and how in relation to events	Technical architects informaticians, clinicians and service users for what purpose and how in relation to events etc.	Clinicians and people who use services were asked what set of information related to events, alerts etc. should be recorded and at what level of detail for retrospective data collection and prospective use.
End of life
Identify what information should be stored, for what purpose and how in relation to end of life care.		Clinicians, social care professionals, carers and people using health and care services were asked the following questions as part of the consultation:	Different place EOL information is represented in the standard?
		What information do individuals, carers and professionals involved in end of life care think is most valuable?
		What are the clinical issues affecting how information is captured and viewed?
		How will patients and carers be affected through sharing the core information?
		What are the benefits?
		What are the risks?
		Do you think a primary diagnosis indicator should be part of the core information?
		Should the core information include the details of organisations involved in supporting the individual:
		If the organisation cannot access or add to the core information?
		If there is no supporting context provided e.g. educational services?
		Should the core information include whether the individual is being supported by a local care initiative, which may not be relevant outside of their immediate area?
		Is 'end of life' an appropriate name for this section? What could it be named instead?
		What information should be recorded about certification of death?
Maternity and child health
To identify elements of existing standards that should be included in the core.		Clinicians and women attending the consultation will be asked the following questions:
		Should the whole healthy child record be available from the core record whilst you are a child, similarly with the maternity record for pregnant women?
		What elements of the healthy child record would need to stay in the core record when the young person transitions to adult services? Should the maternity record continue to be routinely available after the pregnancy outcome and, if so, for how long?

What elements of the maternity record may be relevant to a pregnant woman who presents to a healthcare professional for something not directly relevant to her maternity care? Should safeguarding concerns be included in the LHCR record, which is available to all health care professionals and patients? Should detailed pregnancy outcome delivery and birth information be included in the core record or just the obstetric history of the maternity record? Is blood transfusion history / refusal of blood transfusion relevant for a core record? Should the “Immunisations” section be renamed “vaccinations”? In the family history section, the core record does not include a heading for maternal medical conditions or infectious diseases arising in pregnancy which may have an impact on the foetus – would this be relevant to include? Should local authority for the child protection plan and looked after child status be included in the core record?

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### 17 Appendix H Webinar and focus group attendees #### End of life webinar

Organisation	Name
ADASS	David Watts
Barts Health NHS Trust	Philippa Evans
Carer	Ann Richardson
CareWorks	Martin Hanlon
Compassion in Dying	Upeka de Silva
Compassion in Dying	Zach Moss
Coordinate My Care	Julia Riley
Dorset Care Record	Ellie Venton
DXC Technology	Rhona Dalziel
Graphnet	Dawn Boswell-Challand
Greater Manchester & Eastern Cheshire End of Life Care	Christine Taylor
LAS and Healthy London Partnership	Briony Sloper
Log my Care	Sam Hussain
London Ambulance Service	Frank Neaves
Macmillan	Jo Keyes
Macmillan	Jo Keyes
Marches Care	Mandy Thorn
Mountbatten	Richard Eason
NHS England	Eileen Mitchell
NHS England	Joanne Brooks
NHS England	Rhodri Joyce
NHS England	Diana Robinson
NHS England	Irene Mitchell
NHS Lincolnshire East CCG	Sue Jarvis
North East London NHS Foundation Trust	Phil Koczan
Patient Information Forum	Sophie Randall
Patients and Public	Alan Craig
PRSB	James Burton
PRSB	Kasmyn Chen
PRSB	Martin Orton
PRSB	Pauline Swan
PRSB	Sandip Kaur
PRSB Clinical Advisor	Iain Carpenter
Resuscitation Council	Rachel Warren
Royal College of Physicians HIU	Jan Hoogewerf
Royal College of Physicians HIU	Lindsay Dytham
Salisbury District Hospital	Suzie Neaves
SOCITM	Abbas Awan
South Tyneside NHS Foundation Trust	Edward Nowicki

| Southern Health NHS Foundation Trust | Steve Plenderleith | |---|---| | St Barnabas Hospice | Lawrence Pike | | Surrey and Borders Partnership NHS Foundation trust | Doug Stewart | | The Royal British Legion | Alan Downey | | The Royal British Legion | Ian Cooper | | The Royal British Legion | Sharon Devi | People using services and their carers webinar

Organisation	Name
8 foldhealth	Lyndon Johnson
Accessible Info	Howard Leicester
Carer	Sabin Qureshi
Dorset Care Record	Ellie Venton
Graphnet	Dawn Boswell-Challand
Graphnet	Qaez Anwar
Graphnet	Dawn Boswell-Challand
Graphnet	Qaez Anwar
Greater Manchester Health and Social Care Partnership	Stephen Dobson
Health One Global	Stanley Shepherd
MIND	Paul Ward
NHS Connecting for Health	Miles Gray
NHS Digital	Simon Rose
NHS Digital PHR Programme	Andy Payne
NHS England	John Farenden
NHS England	Diana Robinson
Patient Information Forum	Sophie Randall
Patients and Public	Alan Craig
Patients and Public	Kalina Zaborowska
Patients and Public	Ron Newall
Patients and Public	Suzanne Elsworth
Patients and Public	Patrick Ojeer
Patients Know Best	Shailesh Suri
PRSB	Alannah McGovern
PRSB	Helene Feger
PRSB	Kasmyn Chen
PRSB	Pauline Swan
PRSB Carer	Holly Kearn
PRSB Clinical Advisor	Laura Fulcher
Resuscitation Council	Rachel Warren
Royal College of Physicians HIU	Nicola Quinn

Social care webinar

Organisation	Name
ADASS	David Watts
Alzheimer's society	Francesca Markland
BCS	Andy Kinnear
Care Provider Alliance	Ian Turner
co4cc	Laura Bimpson
Community Integrated Care	Jason Hengler
Dorset County Council	Brian Hole
Graphnet	Barry Keown
Graphnet	Dawn Boswell-Challand
Health and Social Care Alliance	Zahid Deen
Health One Global	Stanley Shepherd
Heart of England Mencap	Ali Arnold
Imperial College Healthcare NHS Trust	Stephen Janering
LHCR Yorkshire and Humber	Neil Bartram
Local Government Association	Mark Golledge
NHS Digital	Keith Strahan
NHS South Central and West CSU	Gary McKelvey
Norse Care	Ben Meen
PossAbilities CIC	Amanda Higgs
PRSB	Kasmyn Chen
PRSB	Sandip Kaur
PRSB	Sarah Jackson
PRSB Clinical Advisor	Iain Carpenter
Royal College of Physicians HIU	Nicola Quinn
SeeAbility	Donna O'Brien
Skills for care	Rob Hargreaves
SOCITM	Russ Charlesworth
Southern Health	Steve Plenderleith
Surrey County Council	Claire White
The Royal British Legion	Ian Cooper
Trafford Council	Paul Dean

Mental health webinar

Organisation	Name
Graphnet	Qaez Anwar
Graphnet	Dawn Boswell-Challand
MIND	Rachel Boyd
MIND	Rachel Boyd
NHS Digital	Ian Binns
NHS England	Hilary Tovey
Oxleas NHS Foundation Trust	James Woollard

| Park Medical Centre, Cambridge | Janice Allister | |---|---| | Patient and Public | Meg Hunt | | PRSB | James Burton | | PRSB | Martin Orton | | PRSB | Helene Feger | | PRSB | Sarah Jackson | | PRSB | Annette Gilmore | | RCGP | Jill Rasmussen | | Remind me Care | Simon Hooper | | Royal College of Nursing | Matt Butler | | Royal College of Psychiatrists | Sarah Hickling | | SLAM | Nicola Byrne | | West Midlands Academic Health Science Network | Sarah Appleby | Maternity and healthy child webinar

Organisation	Name
Cambio Healthcare	Tina Hanlon
Carer	Sabin Qureshi
CSC	Rhona Dalziel
East Suffolk And North Essex NHS Foundation Trust	John Lamont
K2 Medical Systems	Kate Jamieson
Medway NHS Foundation Trust	Vicki Gannon
Medway NHS Foundation Trust	Andrea curling
NHS Digital	Sarah Ashcroft
NHS Digital	Chris Dickson
NHS England	Rhodri Joyce
NHS England	Steven Dodd
NHS South, Central and West CSU	Natasha Neads
Oxford Health	Victoria Kirby
Park Medical Centre - Cambridge	Janice Allister
Patients and Public	Natalie Leal
Patients and Public	Emily Roberts
Poole Hospital NHS Trust	Dawn Jackson
PRSB	Alannah McGovern
PRSB	Helene Feger
PRSB	James Burton
Public Health England	David Elliman
RCOG	Karen Selby
Resuscitation Council	Rachel Warren
Royal College of Physicians HIU	Lindsay Dytham
Royal Surrey County Hospital NHS Foundation Trust	Alison Wooderson
West Midlands Academic Health Science Network	Sarah Appleby
West Midlands Academic Health Science Network	Elaine Russell

Encounters, alerts, appointments and test orders webinar

Organisation	Name
Endeavour Health Charitable Trust	David Stables
Graphnet	Dawn Boswell-Challand
Greater Manchester Health and Social Care Partnership	Malcolm Mundy
Leeds teaching hospitals NHS trust	Daniel Wootton
Leeds teaching hospitals NHS trust	Nigel Hodgson
NHS Dorset CCG	Andy Hadley
NHS England	John Robinson
PRSB	Alannah McGovern
PRSB	James Burton
PRSB	Sarah Jackson
PRSB	Sandip Kaur
PRSB Clinical Advisor	Iain Carpenter
Royal College of Physicians HIU	Jan Hoogewerf
Yorkshire and Humber Care Record Programme	Tony Shannon

Citizen focus group

Representing	Name
Patients	Geoffrey Entwistle
Patients & Carers	Ceri McDade
PRSB	Kasmin Chen
PRSB	Pauline Swan
PRSB Patient Lead and self	Laura Fulcher
RCP Patient Carer Network and self	Richard Triffit
Self	Nannette Spain
Self	Ron Newell
Self	Patrick Ojeer
Self	John March
Self - but involved with many organisations	Victor Boulter
Self & family	Mary Mulwila
Self & family, useMY data, variety of research	Margaret Johnson
UNTRAP; CLROVWN; PILAR; carers	Andrew Entwhistle

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### 18 Appendix I consultation themes and questions (workshop)

Aims	Participants	Consultation questions/themes
Core Information	All
Test the core standard is understood and deemed useful. To determine what information needs to be shared and the practical benefits and potential consequences of doing so.		Workshop attendees were asked the following questions, which are based on a number of scenarios that were posed to the group.
		Does the core information meet the needs and enable better care in the scenario you have been given?
		- For professionals delivering services?
		- For people using services?
		Which parts of the core information will be particularly valuable in this scenario and why? What are the risks of not sharing this information to a person’s safe care and outcomes?
		Is all the core information needed (according to the criteria discussed)? What information is missing and why is it needed?
		What are the most important areas of core information that should be shared, e.g. clinical data for emergency care? Functional data for care of the elderly? Risk assessments for mental health crisis care? Person-centred data such as about me, wellbeing data, functional abilities? What are the risks and challenges you see in this information being shared?
		The scenarios for session two describe people with specific needs for health and social care support. Does this change what should be included in the core information about these users of services in order to support safe and effective care?
	How would it help a person take more control of their own health and care? How could it help an informal carer or a third sector provider of care?
	In what situations would it be useful to see social care narrative assessments rather than the fact that an assessment has taken place?
	Do you have any concerns about sharing the information? How could those concerns be addressed?
	Should core information include patient/user collected data, goals?
	How should this information be used in providing care?
	Should the core include more information to help people to better understand their medications?
	What information should be in the core information set on temporary or permanent disability? PRSB standards currently include accessibility information.
	What types of patient-provided information such as values, goals, functional ability, wellbeing is useful in a mental health setting?
	Should genetic test information be included in core information or flagged?
	Is there any core information that needs to be collected after death? Is it necessary to include it in the core information?
	Is primary support reason (e.g. a physical health issue that requires social care support and is recorded by social care) useful for health care professionals?
	Should anything identified as abnormal be part of the core information – how do we identify what is abnormal? (e.g. high blood pressure during pregnancy)
	Should safeguarding information be included as core information?
		Should developmental skills remain part of core information after a child with special needs transitions to adult care?

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### 19 Appendix J workshop attendees

Organisation	Name
Carer co4cc	Amanda Rudczenko Laura Bimpson
Compassion in Dying	Natalie Koussa
Faculty of Clinical Informatics	John Williams
Genomics England	Amanda O'Neill
Guy's and St Thomas'	Gary McAllister
Gwent and South Powys	Julian Costello
Royal College of Physicians	Jan Hoogewerf
IHRIM	Kim Bellis
IMS Maxims	Michael Thick
LHCR Greater Manchester	Gareth Thomas
Local Government Association	Mark Golledge
Macmillan	Rebecca Wellburn
Macmillan	Samuel Dick
Marches Care	Mandy Thorn
NHS Digital	Keith Strahan
NHS Digital PHR Programme	Andy Payne
NHS Dorset CCG	Andy Hadley
NHS England	John Farenden
NHS England	Oliver Benson
NHS North West Surrey CCG	Kat Stolworthy
NHS South, Central and West CSU	Andrew Fenton
NUH	Michael Azad
Oxleas NHS Foundation Trust	James Woollard
Patients and Public	Alan Craig
Patients and Public	Andrew Entwhistle
Patients and Public	Annie Makowf-Clark
Patients and Public	Geoffrey Entwhistle
Patients and Public	Manjit Johal
Personalised Care Group, NHS England	Jo Harvey
PHE	Clare Jones
PIF	Sophie Randall
PRSB	Alannah McGovern
PRSB	Maureen Baker
PRSB	Annette Gilmore
PRSB	Helene Feger
PRSB	James Burton
PRSB	Kasmyn Chen
PRSB	Lorraine Foley
PRSB	Pauline Swan
PRSB	Sandip Kaur
PRSB	Sarah Jackson
PRSB	Lizzie Cernik
PRSB Clinical Adviser	Iain Carpenter
PRSB Clinical Adviser	John Robinson
PRSB Clinical Adviser	Phil Koczan
PRSB Patient Lead	Laura Fulcher
PRSB/Carer	Holly Kearn
Public Health Agency	Claire Buchner
RCOT	Suzy England
RCP	Matt Butler
RCP HIU	Lindsay Dytham
RCPCH	David Low
RCSLT	Kathryn Cann
Royal College of Psychiatrists	Laurie Beed
Royal Free London NHS FT	Maria McCrann
RPharmS	Stephen Goundrey-Smith
Scottish government	Steve Baguley
SLAM	Omer Moghraby
SLAM	Nicola Bryne
SOCITM	Russ Charlesworth
Southampton CCG	Mark Kelsey
West London Mental Health Trust	Jonathan Scott
Yorkshire and Humber Care Record Programme	Tony Shannon
Yorkshire and Humber Care Record Programme	Lee Rickles

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### 20 Appendix K survey design

Aims	Participants	Consultation questions/themes	Other considerations
Survey
To test a draft of the core information standard model with a wide group of service users and care providers.	All	1. Please tell us your role. 2. Please describe the setting in which you work. 3. Do you agree that sharing core information will bring these benefits? -Improve the quality and safety of care -Make care more efficient -Lead to better integration between services -Support people to take more control and manage their own care -Support better care planning and research 4. What concerns do you have about sharing core information? 5. 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. -Improve communication including the timeliness of information sharing e.g. sharing test results -Promote people managing their own care -Support making joint decisions with professionals about their care -Improve efficiency, e.g. avoid repeating information -Reduce burden on professionals
	-Improve safety
	6. Can you see any issues arising as a result of people who use services contributing to and sharing their information?
	7. 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.
	-About me
	-Demographics and contacts
	-Legal Information
	-Social context
	-Family history
	-Relevant past history
	-Pregnancy status
	-Safeguarding and risks
	-Medications and allergies
	Investigations, examinations and assessments
	-Problems, diagnoses, conditions and procedures
	-Plan and requested actions
	for professionals and the person, including investigations and treatments
	-Vaccinations
	-Developmental skills
	-Participation in research
	-Alerts
	8. What if anything is missing from the above list?
	9. Should 'about me' be prioritised as part of the core information for everyone involved in health and care?
	10. Should alerts (e.g. metallic implant, dangerous dogs) be flagged as part of the core information set?
	11. Should assessment summaries (which include written assessment outcomes for social care and mental health) be included in the core information set?
	12. This subsection is called risks. Does 'risks' describe this section well and is this what you would expect to see in it?
	13. Date, location, performing professional, Gynaecology, past obstetric: is this all the information you need to share as part of the core information set about an individual's past pregnancy history?
	14. Should current pregnancy status be part of the core information set?
	15. Should the core information set include correspondence such as outpatient letters or letters from patients?
	16. 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.)
	17. Should disability be included as a separate section in the core information set? (Mobility, cognitive and accessibility disabilities are currently recorded in individual requirements)
	18. Is this all the information needed for end of life care as part of the core information set?
	19. Do you have any other comments you would like to add before submitting the survey?

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### 21 Appendix L expert review group (attendees)

Expert Group Role	Name
Consultant Psychiatrist & CCIO & clinical informatician	James Reed
Emergency care physician	Tony Shannon
Ex geriatrician & clinical informatician	Iain Carpenter
Ex GP & expert clinical informatician	Ian McNicoll
Ex GP, Newcastle Uni & clinical informatician	Nick Booth
General Practitioner	John Robinson
General Practitioner & clinical informatician	Phil Koczan
MH Nurse & clinical informatician	Matt Butler
North Yorks county council, LHCR (social care)	Neil Bartram
Physio (AHP)	Euan McComiskie
Renal physician, CCIO & clinical informatician	Afzal Chaudhry
Surgeon &CCIO	Dermott O’ Riordan

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### 22 Appendix M expert review group questions Questions from the first expert review group meeting (1 May 2019) #### General questions 1. Does the overall structure of the model make sense to you? 2. Is anything included that you don't think is necessary for the first release? 3. Retaining the clinical context of the information has been raised as a clinical safety risk. The maternity shared record work introduced the use of the following elements to provide some contextual information: * Performing professional (the professional linked to the record entry) * Date (the date of the activity day/month/year, e.g. the date that the procedure took place) * Location (the organisation/institution at which the activity took place e.g. the hospital at which the procedure took place) Is performing professional required as we don’t know what it is – for example when testing blood – is the performing professional the person who ordered the test, the person who took the sample, the clinical scientist who actually performed the assay or the consultant/GP responsible for the order at a senior level – or perhaps all of these? Should specialty be added as an additional contextual data item? 4. An additional concern raised, related to question three above, is that the information model does not articulate the links between the different types of information. For example, a diagnosis would be linked to an encounter/consultation and a diagnosis may be linked to an investigation result or an assessment. It has been discussed that in order to be clinically safe, these links need to be articulated in the model. However, links between information types may depend on use cases and this information model is designed to be generic and should apply to multiple use cases. What are your views on whether the links should be defined in the PRSB information model? 5. The principles we have used to define whether a section, cluster or element is mandatory, required or optional are as follows: * Minimise the number of mandatory data items. * The only mandatory sections are patient demographics and GP practice. * All other sections are required because if the information is there it expected to be part of the record. * At element level some items are mandatory all others are required Does this approach make sense, or should some items be optional if they were optional in other standards, e.g. in the medications and medical devices section? Specific Questions 6. Does “plans and requested actions” make sense as a separate section when not linked to a clinical summary or a discharge summary (for example) – is there sufficient context, if not how should we demonstrate context? • Does “plans and requested actions” overlap with investigations requested – should we include investigations requested underneath plans and requested actions? 7. In encounters - discharge, attendance, admission – is sufficient information included, for example does clinical summary need to be included with discharge? 8. Is there a need to record an assessment of a carer’s competence – this came up in the workshop. If so, could this be recorded under assessments? 9. Should we record if a person is interested in taking part in a clinical trial – this came up in a webinar? 10. Correspondence has been raised as a requirement. There is currently no metadata standard to support correspondence. This was highlighted as a gap in the discovery work. What metadata should be captured about a piece of correspondence? 11. Should we include a distribution list for letters? 12. We have replaced the immunisations section with vaccinations – do we need to add the following elements to cover self-reported vaccinations: • Reported date: The date or partial date that the reported vaccination was given in the opinion of the person and/or parent/carer • Primary source: An indication that the content of the record is based on information from the person who administered the vaccine. This reflects the context under which the data was originally recorded. • Report origin: The source of the data when the report of the vaccination event is not based on information from the person who administered the vaccine. 13. The core information standard does not include a heading for maternal medical conditions or infectious diseases arising in pregnancy which may have an impact on the foetus – would this be relevant to include? Outside of the neonatal period it may not be required. This query came up in the maternity webinar. 14. What is normal for a patient was discussed in two contexts – in relation to observations and in relation to their general wellbeing. • Observations are already recorded under examination findings. Is it useful to record what is normal, e.g. able to use stairs etc in the core information – where should this be recorded? 15. One of the issues raised has been about some terms having a specific meaning with health or social care with potentially different definitions for the same term. Do any of the section or element names fall into this category? 16. The following came up in the workshop – do we want to include these? * A record of birth parents * Status of relationships, e.g. with father * History of relationships, e.g. when did people become foster parents? 17. Should we record reasonable adjustments (this has been raised in relation to social care and mental health)? **Questions related to specific sections** **Patient demographics** 18. Do we need to be able to capture a temporary residence, e.g. if someone is temporarily in a nursing home? Relates to end of life wishes about where someone wants to die. 19. Should we add patient activation status? **Personal contacts** 20. Should we add in a comments field so that information about why a personal contact is important can be recorded? **Problems and issues and diagnosis** 21. Problems and issues and diagnoses are currently separate sections – do we need both sections in the standard? **Disabilities section – potential new section** 22. Is a section for disability required to support the recording and sharing of disability information, e.g. learning difficulties (this was raised by social care and mental health professionals) or would this be covered in either individual requirements (mobility and cognitive needs) or through problems/issues & diagnoses? 23. There is a requirement to support reasonable adjustments – is this a flag or is more information required? **Pregnancy status – new section** 24. Does this section support the requirement to flag whether someone is pregnant? 25. Is the section name correct – pregnancy status – or should it be called something else? **Social Context** 26. Do we need to include primary support reason (from social care systems)? 27. Does equipment provided to the service user, e.g. wheel chair ramp need to be recorded? Where should it be recorded? Could it be recorded under devices or under services and care (in social context)? 28. Is the services and care element within social context sufficient for recording the social care services a person receives? 29. We will incorporate the new standards developed in Birmingham which uses AUDIT C for alcohol intake – this standard has been previously approved and is likely to be adopted by the PRSB. Is there an equivalent assessment for drug use? Assessment scales (changed to assessments) 30. We have added in the following elements to capture output from social care and mental health: a. An assessment element to capture narrative assessments (for social care and mental health) b. Assessment summary to capture a summary of an assessment c. Formulation to provide a diagnostic summary of mental health assessments Do we also need to include an element for assessment type? 31. Would the Frailty Index: electronic Frailty Index (eFI) used by GP / Clinical Frailty Score used by clinicians be covered by assessment scales? Future Appointments 32. Does this allow the capture of social care appointments (e.g. someone visiting the person to provide domiciliary care or to undertake a care needs assessment)? Questions from the second expert review group meeting (16 May 2019) 1. Retaining clinical context of the information has been raised as a clinical safety risk. The core information standard uses the following: * Performing professional (the professional linked to the record entry) * Date (the date of the activity day/month/year, e.g. the date that the procedure took place) * Location (the organisation/institution at which the activity took place, e.g. the hospital at which the procedure took place) We have reviewed this section by section and have used “performing professional” to mean different things in different sections. In some sections we have also added person completing the record where the performing professional may be different from the person that recorded the information. Does this approach make sense? 2. An additional concern raised, related to question three above, is that the information model does not articulate the links between the different types of information. For example, a diagnosis would be linked to an encounter/consultation and a diagnosis may be linked to an investigation result or an assessment. We are proposing that in the information guidance we include reference to the fact that all links between information need to be retained and that this is addressed in the logical data model work. 3. The principles we have used to define whether a section, cluster or element is mandatory, required or optional are as follows: * Minimise the number of mandatory data items. * The only mandatory sections are patient demographics and GP practice. * All other sections are required because if the information is there it expected to be part of the record. * At element level some items are mandatory all others are required. We have now implemented this approach in the model and reviewed changes to MRO inherited from existing standards with clinical advisors. Do you support this approach in release one? 4. We have recognised the need to review descriptions and, in some instances, amend the description used in the standard the element was taken from. An example being we have amended the use of patient to person. Are you happy with this approach? 5. The last expert group review recognised a tension between generic and specific sections in the information model, an example being the discussion on information contained in the pregnancy section and the recognition pregnancy was a condition. We have however left the pregnancy section in the model as an exception to the generic approach as due date is not covered elsewhere in the information standard. Are you happy with this exception? 6. We have removed the history section from the information model on the basis that medical and mental health history would be included in problem lists, surgical history would be included in procedures. We are unclear however whether obstetric history, e.g. history of stillbirth and whether the pregnancy outcome resulted in a live birth would be recorded in “problem lists”? 7. We have been made aware of a specific concern about merging diagnosis and problems and issues into a single section - problem lists – which was the approach taken for the maternity record. What are your views on this? 8. We are not proposing a separate disabilities section because we believe that information contained in the generic problem list section should accommodate disabilities information. Support for people with disabilities would be included in the individual requirements section – would this section cover reasonable adjustments? Are you happy with this approach? 9. We have removed the developmental skills section because we believe that information would be covered under observations. Are you happy with this approach? 10. We have removed the person expectations, concerns and wishes section as we believe the information contained in it is duplicated in the ‘about me’ section of the Core Information Standard. Are you happy with this approach? 11. We have retained a correspondence section and plan to include metadata based on the OneLondon definition of correspondence metadata. We propose to take a similar approach to documents and images/scans. These sections are ‘catch alls’ for where correspondence, documents and images are not specifically referenced in other sections. Are you happy with this approach? 12. We are assuming that results of genetic testing could be supported by the investigation results section. Is that correct? 13. There have been many queries about what consent needs to be captured for sharing information but also other types of consent. We have three types of consent defined in the core information standard (as below). Are these required in the core information standard? * Consent for information sharing * Consent relating to a child * Consent for treatment 14. Plans are included in a number of places in the model. Are all these sections required? Where would birth plans, EoL plans, MH crisis care plans be covered?: * Plans and requested actions * Care and support plans * Contingency plans * Additional supporting plans.

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### 23 Appendix N supplier webinar questions 1. Is the scope of the PRSB’s work on the core information standard clear? 2. Does the scope of the core information standard seem over ambitious? 3. Are the outputs of the PRSB’s work clear? 4. Is the expectation about the issues that will be addressed locally reasonable? 5. Do suppliers support the design principles and the approach to developing the standard, including the consultation process? 6. Are there other information ‘artefacts’ that suppliers would like to see developed centrally? 7. Are suppliers happy with the structure of the information model, MRO and value sets? 8. What are supplier views on the areas for further work: * Retaining context of the information * Sharing documents and images

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### 24 Appendix O supplier webinar attendees

Organisation	Name
Allscripts Healthcare (IT)	Paula Cross
ATOS	Elaine Bennett
Cerner	Ben McAlister
Cerner	Oezcitak Ertugrul
DXC Technology	Nilesh Jain
DXC Technology	Derek Fleming
Graphnet	Colin Innes
Graphnet	Dawn Boswell-Challand
Kainos software	Alastair Allen
Kainos software	Graham Lyttle
NHS Arden and Greater East Midlands CSU	Pavani Yatham
NHS Digital	Michael Bond
NHS Digital	Zac Whitewood-Moores
NHS England	Catherine Leggett
NHS South, Central and West CSU	Shauna McMahon
Orion Health	Bally Toor
PA Consulting	Jeremy Thorp
PA Consulting	Proteus Duxbury
Philips UK & Ireland	Dennis Polling
PRSB Clinical Advisor	Philip Scott
PRSB Patient lead	Laura Fulcher
NHS South, Central and West CSU	John O'Connell
NHS South, Central and West CSU	Mike Mcmillan
NHS South, Central and West CSU	Catherine Dampney
NHS South, Central and West CSU	Kate Toomey
Tech UK	Michael Thick
The HCI Group	Estelle Davies

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## Clinical Safety Case Report April 2026

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### Document Management #### Revision History

Version	Date	Summary of Changes
0.1	03/07/2019	First draft created by Dr Annette Gilmore (AG)
0.2	08/07/2019	Updated by Dr John Robinson (JR), CSO
0.3	12/07/2019	Updated by Dr Annette Gilmore following meeting with JR
0.4	24/07/2019	Updated following comments from CSC meeting and Hazard log workshop attendees
0.4	09/08/2019	Reviewed and agreed by PRSB Assurance Committee
0.5	06/08/2019	Final edits by Dr John Robinson
0.6	16/08/2019	Edits to include late feedback.
1.0	16/08/2019	Version to distribute to NHS Digital Clinical Safety Team
1.1	30/09/2019	'Sex and Gender Risk mitigated by implementation' - NHSD Clinical Safety Group comments addressed by JR and AG Following advice from NHSD CSG additional information was added to CIS Implementation Guidance (version 1.2) regarding all CIS risks and 'sex' field
1.2	29/09/2020	First draft created by James Critchlow. This is an updated version of the Core Information Standard (CIS) Safety Case, which now includes Digital Social Care Information products made up of an updated standard for "About Me", a standard for the sharing of data from Local Authorities and guidance on which sections of the CIS should be in the Care Homes view.
1.3	07/10/2020	Updated by Dr John Robinson
1.4	29/10/2020	Updated following assurance committee feedback on hazard log
1.5	29/10/2020	Appendix B removed
1.6	09/03/2021	Edits made following feedback from NHS Digital Clinical Safety Team
1.7	06/04/2021	Edits made following feedback from NHS Digital Clinical Safety Team
1.8	28/04/2026	Updated to reflect changes made to the sex and gender data items in the standard.

#### Reviewed by This document must be reviewed by the following people:

Name	Signature	Date
Clinical Safety Officer	Dr John Robinson	30/10/2020
PRSB Assurance Committee	PRSB Assurance Committee	07/10/2020
Clinical Safety Officer (for review of changes related to changes to sex and gender data items)	Dr Steve Bentley	28/04/2026

#### Approved by This document must be approved by the following people:

Name	Signature	Date
Clinical Safety Officer	Dr John Robinson	30/10/2020
PRSB Assurance Committee	PRSB Assurance Committee	07/10/2020
Project Board	Project Board	30/09/2020
NHS Digital Clinical Safety Group	NHS Digital Clinical Safety Group	01/04/2021
Clinical Safety Officer	Dr Steve Bentley	28/04/2026

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#### Glossary of Terms

Term / Abbreviation	What it stands for
CCG	Clinical Commissioning Group
CIS	Core Information Standard
COVID-19	Coronavirus disease 2019
CPR	Cardio - Pulmonary Resuscitation
CQC	Care Quality Commission
CSCR	Clinical Safety Case Report
CSG	Clinical Safety Group
CSMS	Clinical Safety Management System
CSO	Clinical Safety Officer
DCB	Data Coordination Board
dm+d	Dictionary of Medicine and Devices
EHR	Electronic Health Record
EMIS	Egton Medical Information Systems
FHIR	Fast Healthcare Interoperability Resources
GDPR	General Data Protection Regulation
GP	General Practitioner
GUI	Graphical User Interface
IG	Information Governance
IHD	Ischaemic Heart Disease
ISN	Information Standard Notice
IT	Information Technology
KPI	Key Performance Indicator
LCR	Local Care Record
NHS	National Health Service
NHSD	NHS Digital
NHSE	NHS England
NPSA	National Patient Safety Agency
OPCS	Office of Population Censuses and Surveys Classification
OTC	Over the Counter
PAS	Patient Administration System
Patient	Subject of the record
PDS	Patient Demographic Service
PRSB	Professional Record Standards Body
RBAC	Role Based Access Control
READ	READ - coded thesaurus of clinical terms
SNOMED CT®	Systematized Nomenclature of Medicine – Clinical Terms

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### Related Documents

Ref no	Title
[1]	Persons Core Information Standard v1, July 2019, Professional Record Standards Body;
[2]	Core Information Standard: Survey Results and Analysis, July 2019, Professional Record Standards Body;
[3]	DCB0129: Clinical Risk Management: its Application in the Manufacture of Health IT Systems;
[4]	Core Information Standard Final Report v1, July 2019, Professional Record Standards Body;
[5]	Digital Social Care Information Final Report v1, September 2020, Professional Record Standards Body;
[6]	DCB0160: Clinical Risk Management: its Application in the Deployment and Use of Health IT Systems;

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### 1 Executive Summary and Safety Statement This is an updated version of the Core Information Standard (CIS) Safety Case, which now includes Digital Social Care Information products made up of an updated standard for “About Me”, a standard for the sharing of data from Local Authorities and guidance on which sections of the CIS should be in the Care Homes view. This clinical safety case should be reviewed on an annual basis. This PRSB Core Information Standard (CIS) standard [Ref.1] has been developed following extensive consultation with patients, carers and other citizens, health and care professionals and system vendors as set out in the Core Information Standard Final Report and Core Information Standard Survey Results and Analysis Report [Ref.2]. It is intended to be used as the standard set of headings, under which data can be viewed in any shared care record, with a clear aim that different shared care records should be interoperable. Local care records (LCR) will consist of data from multiple sources in both health and social care settings. It will not include all data from all sources and is intended to be information that is felt to be important to share. PRSB has been asked to define a CIS, which is “A set of “Concept” headings, referred to as “Sections” under which users need to be able to view the data. This will sit in a local care record; the development and design of which will be done locally.” However, the data viewable under these sections is entirely dependent on the source data being shared and processed appropriately so that the correct information is available under the right section at the right time and is readily accessible. The user experience is dependent on the design of the systems and the graphical user interface (GUI). All these things on which the sections are dependent are out of scope of this clinical safety review. The CIS is only a single component of a shared care record and a separate end to end safety case will need to be made for each record system. Such a safety case may reference this clinical safety case for the Core Information Standard element of it. The CIS model does not contain all the contextual information available for data items and therefore it is not expected that the Core Information Standard will be the only view available in any shared record system. The CIS view of information is over and above and in no way a replacement for existing health record systems. It is also a “Core” record and will not, by definition, contain all data. The safety case is for a read only record for direct care and if it should become a read/write record and source of original data, the safety case would need to be reviewed. Any use for secondary uses of the data should also consider any clinical safety impacts. The Hazard workshop for the CIS identified 30 hazards. The addition of the digital social care information products identified an additional six hazards. The review as a result of changes to the sex and gender data items resulted in a change to one hazard and the addition of another hazard. Thirty one of these have an acceptable residual risk of 2. The remaining six have a residual risk of 3, which includes two of the new hazards. Many of the hazards are concerning the data, which could be missing, misplaced, inaccurate or conflicting and potentially present but inaccessible. Mitigations for all of these include system design and training. There are hazards related to some specific sections. These are Allergies, Medications, Problems and Diagnoses, Alerts and Care plans. In these areas the concerns are about the different data models in contributing systems and the need for training in both using local care records and recording data in source systems, which needs to be shared. Also, the significance of getting the information wrong. One hazard was initially identified as being at risk level 4 is: **Hazard 16: Sex data item may cause accidental disclosure of gender reassignment without consent.** However, this hazard was subsequently re-evaluated as a result of updates to the standard and clarification of the disclosure risk and scored 3, reduced to 2 on mitigation. The hazard now reads as follows: Hazard 16: Recording an individual's 'Gender identity' alongside their 'Sex at birth (observed)' in their clinical record and displaying together along with 'Administrative gender' (derived from the Personal Demographics Service) may cause accidental disclosure of transgender, non-binary or gender diverse status causing psychological harm. The other hazards with a residual undesirable risk level of 3 are: * **Hazard 8: The context or provenance of the information is lost, unknown or misunderstood.** The CIS is a set of sections under which information is displayed, but that this view does not allow all the useful context and provenance of the information. Other views of the data should be made available using the relationships between data items defined in the Logical Data Model for LCRs. The addition of data from Local Authorities (which may include child protection or vulnerable adult data) and the About Me section, (which is created by the subject of the record or their proxy) have increased the importance of users of the system understanding the source of the data and its context when making judgements on the validity of an entry. * **Hazard 11: Significant problems, diagnoses, conditions or procedures are not visible to healthcare user.** The Problems and Diagnoses section it is recognized that further work needs to be done to develop a clear idea of precisely what data should be contained in it. Methods for updating and curating the data will also need to be established. * **Hazard 24: Failure to adopt the CIS.** The development of the CIS standard needs to be supported in its adoption by promotion by NHS Digital, NHS England, PRSB, social care bodies including care home and local authority representatives and pharmacy bodies and stakeholder organisations who have provided endorsement for the standard. The heterogeneity in the data items recorded by different local authorities and care homes will increase this risk as certain centres may consider the scope of the standards as limited or difficult to implement. Failure to adopt it risks multiple different models being adopted, resulting in lack of interoperability and lack of user familiarity. Leading to loss of benefit and potential patient harm. * **Hazard 25: CIS used out of scope.** The safety case is based on the CIS being used in scope. The heterogeneity in the data items recorded by different local authorities and care homes will increase this risk as certain centres may consider the scope of the standards as limited or difficult to implement. The implementation guidance should be followed. * **Hazard 30: Patient data error in interconnecting systems (Out of scope for Middleware Manufacturer noted here for Health Organisation only).** The addition of data from Local Authorities has increased this risk to a level 3 and it remains at this level of residual risk. Identifying demographics information should be obtained from established sources such as the Patient Administration System [PAS] or national Patient Demographic Service [PDS]) – however, it is recognised that data may be missing, incorrect, incomplete, out of date or corrupt; creating a clinical safety risk. Local Authorities have identified significant issues in NHS number tracing, which is legal requirement. * **Hazard 31 – Data in the legal section misunderstood or missing:** The importance of being able to locate original documents was strongly emphasised. It is critical during transfers of care that there are processes in place to ensure original documents (e.g. DNACPR forms) can be viewed and mechanisms are there to ensure that these documents are up to date. It is recognised that national solutions are currently being sought to this problem. All risks identified in the Hazard log are transferred, to those who incorporate the Core Information Standard and the Digital Social Care information into their EHR (Electronic Health Record). There are mitigations and training recommended for the risks that should be undertaken where possible to reduce them to the lowest possible risk. Any safety incidents occurring, which might be due to the CIS must be reported promptly to the PRSB for review.

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### 2 Introduction

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#### 2.1 Purpose of Local Care Records and the PRSB Core Information Standard The aim of the local health and care records programme is to help local organisations move from today’s position, where each health and care organisation holds separate records for the individuals they care for, to one where an individual’s records are connected up from across the health and care system. This will help health and care professionals to share information safely and securely as the people they care for move between different parts of the NHS and social care. It also enables individuals to be able to access their own records irrespective of which part of the health and care system that has provided them with their care. The design of such Patient portals is out of scope of this safety review. The PRSB Local Care Records’ Core Information Standard has been developed following extensive consultation with patients, carers and other citizens, health and care professionals and system vendors. It is intended to be used as a standard set of sections, under which data can be viewed in all local care records, with a clear aim that different LCRs should be interoperable. The Core Information Standard (CIS) gives one view of the data. A data item should only appear under one section, although this is not a hard and fast rule. It does not show all the relationships of data items. In addition, users may see filtered views of the CIS depending on the setting and situational requirements e.g. views based on the PRSB Care Homes View, About Me, Local Authority Information, Digital Care and Support Plan etc. Electronic health records generally allow the user to view the data in several different ways and these are used to validate and further understand the history of the record subject – the patient/ service user. For instance, a journal or historic view may be compared with a problem orientated view or an encounter or episode orientated view. The logical data model being developed by NHS Digital and PRSB is designed to hold links between the data items and provide the context and provenance of the data. It may be used by the system designers to develop a variety of other views of the data. It is therefore expected that the Core Information Standard will not be the only view available in any shared record system. The Core Information Standard view of the data is supplementary to the primary clinical systems. It is a way of sharing more data about a record subject and should therefore contribute to improving the quality and safety of care. The addition of this view is over and above and in no way a replacement for existing record systems. The LCR is for a read only interface initially. This safety case is for a read only record for direct care and if it should become a read/write record and source of original data, the safety case would need to be reviewed. #### 2.2 Purpose of the Clinical Safety Case Report This Clinical Safety Case Report (CSCR) for the Local Care Record Core Information Standard (CIS) addresses the requirements of DCB/ ISB 0129 V4.2 Clinical Risk Management: it’s Application in the Manufacture of Health IT Systems [Ref.3]. The full application of DCB0129 cannot be applied, as the professional standard itself is not a manufactured health IT system. However, the guidance within DCB0129 concerning clinical risk management and appropriately governed hazard assessment has been considered. Compliance to requirements from DCB0129 are summarised in section 14.

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### 3 System Definition / Overview / Scope Local care records will consist of data from multiple sources in both health and social care settings. It will not include all data from all sources and is intended to be information which is felt to be important to share. The data will be shared with the LCR using FHIR resources and APIs. It will then be normalised and de-duplicated before being stored in, in most cases, a database. The design of the database is expected to be informed by the logical data model, for the LCRs, being developed by NHS Digital. This will define the provenance, context and relationships of data items. Some LCRs may dispense with the database and pull data when it needs to be viewed. The LCR Core Information Standard is a set of “Concept” sections under which users need to be able to view the data. This is not necessarily a physical entity and data may be rendered in that view at time of access. There are currently in excess of sixty local shared care records in operation across the country. NHS England has established a programme, the Local Health and Care Records (LHCR) programme, to expand the coverage of local shared care records to cover larger populations. This will make important information available to health and care professionals and people using services across wider geographic areas, covering populations of three to five million, to improve the quality of care and care co-ordination. In order to realise these benefits, the core information standard was developed which defines and standardises the type of information that should be shared by systems that will talk to one another across health and social care, with the right safeguards in place. The original standard was developed in two phases: the first phase reviewed evidence from existing standards and shared care records in order to produce a draft core information standard. This was achieved by mapping NHS England’s definition of the core information set, the Greater Manchester core dataset and the PRSB Standards for the Structure and Content of Health and Care Records (PRSB 2018) against the national and international standards and records. These are all referenced in the CIS final report [Ref.4]. The second phase developed the standard in key areas where it was seen that further work was needed (e.g. mental health and social care). The PRSB carried out broad and in-depth consultation and engagement across health and social care using online workshops, a national deliberative face to face workshop, social media (to obtain more diverse input from the public), expert reviews, an online workshop for vendors and an online survey. This allowed the content of the information standard to be refined and started to build awareness and support among all the key groups with an interest in information sharing in health and care. This update to the standard includes Digital Social Care Information, which consists of a standard for data being shared from local authority records into the CIS, a revised standard for the “About Me” section, which is now much more structured than previously and guidance on a “Care Homes” view of the data. These additions were developed in the same manner as the main CIS, with a review of the evidence then wide stakeholder consultation. The standard does not define how the data is viewed in individual systems, which will be down to the individual GUI of each system. The data items under each section will retain information about the date the item was recorded and the author of it. However other pieces of contextual data such as which encounter, problem or document it was a part of, are not be part of the standard. The logical data model is expected to manage these links; other views of the data based on that are expected to be created to show more provenance and context but are not a part of this standard.

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#### 3.1 Illustration of shared care record creation This is a graphical representation of the process involved in creating the local shared care patient record. It illustrates the interdependencies in the LCR creation and deployment. The PRSB CIS is one component in the process. The scope of this clinical safety case includes the PRSB CIS component only. Shared Care Record Creation diagram showing GP, Hospital, Social care systems feeding into Data normalisation and de-duplication, then Local Care Record, Core Information Standard, Other Data Views e.g. Care Homes View, Logical Data Model, GUI Rendered Views, and End-user.</img>

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#### 6.4 Hazard workshops and clinical safety case meetings Potential clinical safety risks were identified throughout the development of the CIS and the updates conducted as part of the Digital Social Care Information project. These risks were specifically explored at several advisory group meetings.

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##### 6.4.1 Original consultation: A hazard workshop was convened to explore all the risks to patient safety and develop the original CIS hazard log. Details of these meetings are described below:

Hazard Workshop 1
Date	31.05.2019	Time	10:00 – 15:00
Location	Face to face workshop at PRSB offices
Attendees:
	Name	Role
Chair	John Robinson	Clinical Safety Officer / GP/ Clinical informatician
	Maggie Lay	Integrated Care Lead/CSO/ CNIO/ Community nurse
	Matt Butler	Clinical informatician/ Mental health nurse
	Ron Newall	PRSB patient advisor and subject matter expert
	Annette Gilmore	Clinical informatician/ Acute care nurse

### 13 Document Control and Post Standards Approval Maintenance Future governance of the development and maintenance of the Core Information Standard is the responsibility of the PRSB.

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### 14 DCB 0129 Compliance Matrix The table below summarises the compliance status of this safety case for the PRSB Core Information Standard

Requirement	Compliant (Y/N)?	Comments
2. General Requirements and Conformance Criteria for Clinical Risk Management	Y	See section 4
2.1 Clinical risk management process	Y	See section 4
2.2 Top Management responsibilities	Y	See section 4
2.3 Clinical Safety Officer	Y	See section 4
2.4 Competencies of personnel	Y	See section 4 & 6
3.1 Clinical risk management file	Y	This document in its entirety, including supporting evidence, the CIS and Digital Social Care Information products and implementation guidance.
3.2 Clinical risk management plan	Y	See section 5 & 6
3.3 Hazard log	Y	See section 7
3.4 Clinical safety case	Y	This document in its entirety, including supporting evidence, the CIS and Digital Social Care Information products and implementation guidance.
4 Clinical risk analysis	Y	See section 5
4.1 Clinical risk analysis process	Y	See Section 6
4.2 Health IT System scope definition	Y	See section 2
4.3 Identification of hazards to patients	Y	See section 5

| 4.4 Estimation of the clinical risk(s) | Y | See section 6 | |---|---|---| | 5 Clinical risk evaluation | Y | See section 6/7 | | 6 Clinical risk control | Y | See section 6/7 | | 6.1 Clinical risk control option analysis | Y | See section 6/7 | | 6.2 Clinical risk/benefit analysis | Y | See section 6/7 | | 6.3 Implementation of clinical risk control measures | Y | See section 6/7 | | 7.1 Delivery | Y | This document in its entirety, including supporting evidence, the CIS and Digital Social Care Information products and implementation guidance. | | 7.2 Post-deployment monitoring | N | Not required for a professional standard. | | 7.3 Modification | Y | See section 13 |

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### 15 Appendix A – Risk Matrix

Likelihood	Very High	3	4	4	5	5
	High	2	3	3	4	5
	Medium	2	2	3	3	4
	Low	1	2	2	3	4
	Very low	1	1	2	2	3
		Minor	Significant	Considerable	Major	Catastrophic
Consequence

Likelihood Category	Interpretation
Very high	Certain or almost certain; highly likely to occur
High	Not certain but very possible; reasonably expected to occur in the majority of cases
Medium	Possible
Low	Could occur but in the great majority of occasions will not
Very low	Negligible or nearly negligible possibility of occurring

Consequence Category	Interpretation
Consequence Category	Consequence	Patients Affected
Catastrophic	Death	Multiple
Catastrophic	Permanent life-changing incapacity and any condition for which the prognosis is death or permanent life-changing incapacity; severe injury or severe incapacity from which recovery is not expected in the short term	Multiple
Major	Death	Single
	Permanent life-changing incapacity and any condition for which the prognosis is death or permanent life-changing incapacity; severe injury or severe incapacity from which recovery is not expected in the short term	Single
	Severe injury or severe incapacity from which recovery is expected in the short term	Multiple
	Severe psychological trauma	Multiple
Considerable	Severe injury or severe incapacity from which recovery is expected in the short term	Single
	Severe psychological trauma	Single
	Minor injury or injuries from which recovery is not expected in the short term.	Multiple
	Significant psychological trauma	Multiple
Significant	Minor injury or injuries from which recovery is not expected in the short term	Single
	Significant psychological trauma	Single
	Minor injury from which recovery is expected in the short term	Multiple
	Minor psychological upset; inconvenience	Multiple
Minor	Minor injury from which recovery is expected in the short term; minor psychological upset; inconvenience; any negligible consequence	Single

	Risk Acceptability
5	Unacceptable level of risk. Mandatory elimination or control to reduce risk to an acceptable level.
4	Unacceptable level of risk. Mandatory elimination or control to reduce risk to an acceptable level
3	Undesirable level of risk. Attempts should be made to eliminate or control to reduce risk to an acceptable level. Shall only be acceptable when further risk reduction is impractical.
2	Tolerable where cost of further reduction outweighs benefits gained.
1	Acceptable, no further action required

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## Survey Results and Analysis July 2019

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### Acknowledgements **The Professional Record Standards Body** The independent Professional Record Standards Body (PRSB) was registered as a community interest company in May 2013 to oversee the further development and sustainability of professional record standards. Its stated purpose in its Articles of Association is: "to ensure that the requirements of those who provide and receive care can be fully expressed in the structure and content of health and social care records". Establishment of the PRSB was recommended in a Department of Health Information Directorate working group report in 2012. **Copyright** You may use and re-use the information featured in this document (not including logos or images) free of charge in any format or medium, under the terms of the Open Government License. Any enquiries regarding the use and re-use of this information resource should be sent to: support@theprsb.org. Where we have identified any third-party copyright material you will need to obtain permission from the copyright holders concerned. Information and content © PRSB 2019 **Professional Record Standards Body** 7 - 14 Great Dover Street, London, SE1 4YR www.theprsb.org Community Interest Company No 8540834 #### Revision History | Version | Date | Summary of Changes | | :------ | :--------- | :----------------- | | 1.0 | 31/05/19 | Publication version | #### Reviewers This document was reviewed by the following people: | Reviewer name | Title / Responsibility #### Approved by | Name | Date | Version | | :------------------------ | :--------- | :------ | | Project Board | 26/06/19 | 0.6 | | PRSB Assurance Committee | 19/06/19 | 0.6 |

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##### 2.2 Q3. Do you agree that sharing core information will bring these benefits? Answered: 1,010 Skipped: 0

///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 --> 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]

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##### 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.

///mermaid xychart-beta horizontal title "Identified Barriers to Sharing Data (Descending Count)" x-axis ["Information governance", "Quality", "None", "Ownership/ consent", "comms&understanding", "Systems & methods", "Safety", "Info overload", "Culture", "Other"] y-axis "Response Count" bar [429, 154, 113, 113, 64, 64, 32, 29, 20, 1]

| | | | | :---------------------------- | :--- | :---- | | comms&understanding | 7.66%| 64 | | Culture | 2.40%| 20 | | Info overload | 3.47%| 29 | | Information governance | 51.38%| 429 | | None | 13.53%| 113 | | Other | 0.12%| 1 | | Ownership/consent | 13.53%| 113 | | Quality | 18.44%| 154 | | Safety | 3.83%| 32 | | Systems & methods | 7.66%| 64 | 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)

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##### 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

///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 --> 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]

| | STRONGLY AGREE | AGREE | NEITHER AGREE OR DISAGREE | DISAGREE | STRONGLY DISAGREE | TOTAL | WEIGHTED AVERAGE | | :------------------------------------------------------------------------------------------ | :------------- | :------- | :------------------------ | :------- | :---------------- | :---- | :--------------- | | Improve communication including the timeliness of information sharing e.g. sharing test results | 60.95% | 31.71% | 5.25% | 0.99% | 1.09% | 1,009 | 1.50 | | | 615 | 320 | 53 | 10 | 11 | | | | Promote people managing their own care | 47.87% | 35.68% | 13.28% | 1.98% | 1.19% | 1,009 | 1.73 | | | 483 | 360 | 134 | 20 | 12 | | | | Support making joint decisions with professionals about their care | 55.74% | 34.26% | 7.72% | 1.29% | 0.99% | 1,010 | 1.58 | | | 563 | 346 | 78 | 13 | 10 | | | | Improve efficiency e.g. avoid repeating information | 66.14% | 25.54% | 5.54% | 1.78% | 0.99% | 1,010 | 1.46 | | | 668 | 258 | 56 | 18 | 10 | | | | Reduce burden on professionals | 40.38% | 29.86% | 22.02% | 5.75% | 1.98% | 1,008 | 1.99 | | | 407 | 301 | 222 | 58 | 20 | | | | Improve safety | 51.98% | 31.55% | 13.49% | 1.69% | 1.29% | 1,008 | 1.69 | | | 524 | 318 | 136 | 17 | 13 | | | - 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

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##### 2.5 Q6. Can you see any issues arising as a result of people who use services contributing to and sharing their information?

///mermaid xychart-beta title "Survey Responses (Yes/No/Not Sure)" x-axis ["Yes", "No", "Not sure"] y-axis "Percentage" 0 --> 100 bar [51.73, 26.32, 21.95]

Answered: 984 Skipped: 26 | ANSWER CHOICES | RESPONSES | | | --- | --- | --- | | Yes | 51.73% | 509 | | No | 26.32% | 259 | | Not sure | 21.95% | 216 | | TOTAL | | 984 | * 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)

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##### 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.

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#### Section 3: Pharmacy (NHS funded) ➢ 5 days into her course of oral antibiotics, Kate becomes concerned for Dorothy; Dorothy hasn't finished her meals for the last 2 days. That morning she has diarrhoea and is complaining about headaches and changes in vision including blurred vision and seeing halos around bright objects. ➢ Kate decides to pick up her repeat prescriptions for memantine, an acetylcholinesterase inhibitor and digoxin. She monitors Dorothy closely for the rest of morning. She plans to call Dorothy's GP if her condition doesn't improve after her medication. ➢ Kate arrives at her local high street pharmacy. Kate gives the pharmacist her mother's details; the pharmacist checks them against her record. Whilst Kate is at the counter, she explains that her Mother that has been unwell, asking for her advice on whether this is a side effect from any of her medication. ➢ The pharmacist checks Dorothy's allergies; she has no drug allergies. The pharmacist rules out an allergic reaction. ➢ The pharmacist then checks when Dorothy's last renal check was. It was 6 weeks ago and shows that her kidneys were functioning well, therefore the pharmacist rules out Digoxin toxicity. ➢ The pharmacist notices that Dorothy is 5 days into a course of nitrofurantoin, which she hasn’t been prescribed before. Nitrofurantoin can cause nausea, diarrhoea and headaches. She suspects this is the cause of Dorothy's newly displayed symptoms. ➢ The pharmacist recommends that Kate calls her GP for advice on Dorothy’s reaction to the antibiotics. They also recommend that Kate books an eye examination for Dorothy when she is feeling better.

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## Core Information Standard V2.01 * **Publication Date:** April 2026 * **Previous Release:** v2.0 (August 2021) --- ### Safety Relevant Changes – Data Items Relating to Sex and Gender The following changes have been made to the clinical safety case report and hazard log: * **Hazard Log Update:** Updated to version 2.2. * **Safety Case Update:** Updated to version 1.8. * **New Hazard Created:** Hazard 37 “Mis-interpretation of sex”. * **Replaced Hazard 16:** Replaced “Sex data item may cause accidental disclosure of gender reassignment without consent” with a new hazard: > “Recording an individual's 'Gender identity' alongside their 'Sex at birth (observed)' in their clinical record and displaying together along with 'Administrative gender' (derived from the Personal Demographics Service) may cause accidental disclosure of transgender, non-binary or gender diverse status causing psychological harm”. --- ### Model and Implementation Guidance The following changes have been made to the model and implementation guidance: * **Model Uplift:** Uplifted from version 2.0 to 2.01 to align to the minor release version, including updated sex and gender data items. * **Guidance Integration:** Section-specific implementation guidance is now included directly in the model. * **Model Changes:** Documented in the summary table below. #### Summary - Information model changes in this release | Location | Data item | Update | Detail | | :--- | :--- | :--- | :--- | | **Person demographics** |

Gender
Sex

Sex at birth (observed)
Administrative gender
Gender identity
Additional information about gender identity
Pronouns

| Addition of data item(s) |

**Sex at birth (observed)** is a mandatory data item.
**Administrative gender** is a required, read-only legacy data item for England only to represent the data held on the Personal Demographics Service (PDS).
All other new data items are required in the core information standard.

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## Core information standard v2.0 logical model ### Publication Date: August 2021 Updates have been made as part of the logical model project to: * **Alignment with other completed standards** projects since the previous release (Dec 2018). * **Maintenance issues** logged since the previous release. * Updated more succinct **valuesets** for many elements for mapping to latest release of SNOMED CT, NHS data dictionary and to align to UK core R4 FHIR profiles * **FHIR Target** added to represent the link to the UK core FHIR R4 where clinical and technical assurance has taken place * **Datatypes** added to reflect a logical model * Standard JSON extract exported to SPARX EA and UML entity and attribute diagrams developed * **SNOMED Tags** added in places where clinical agreement of SNOMED CT codes has taken place to improve interoperability * **Elements decomposed**: the data models for clinical concepts have been enhanced to be more structured. Includes: * addition of ‘coded’ and ‘free text’ fields for all coded elements, or * restructuring (eg) ‘Patient Address’ to include elements for each line of the address. This aligns standards closer to the associated technical specifications and therefore makes them more implementable. ### Section: Person Demographics

Elements	Update	Detail
Person demographics	Updated section name Elements decomposed Metadata added	‘Patient demographics’ > ‘Person Demographics’
Person name	‘Person Name’ has been restructured into a cluster with additional elements.	New elements added: - Person first name - Person Family Name - Person preferred name - Title - Person name suffix - Person full name All new elements include updated value sets
NHS	New	Added to person demographics section to align to PDS and core
number status indicator	element	information standard.
Person's address	Element restructured into a cluster with additional elements.	New elements for: - Address Line 1, - Address Line 2 - Address Line 3 - Address Line 4 - Address Line 5 - Postcode - Address Type All new elements include updated value sets
Person's contact details	New cluster	Cluster includes new elements for: - Preferred contact method - Person's telephone number details (cluster – see below) - Person's Email Address details (cluster – see below) - Other contact information (optional field)
Person's telephone number details	New cluster	Associated elements: - Person's telephone number - Person's telephone number type - Preference of telephone number
Person's email address details	New cluster.	Associated elements: - Person's email address - Person's email address type - Preference of email address
Organ and tissue donation	Moved element to 'person demographics' section.	Previously recorded under 'Legal Information'. Added to person demographics to align to PDS.
Photograph	New element	Added to person demographics section to align to social care standards.
Overseas visitor status	New element	Added to person demographics section to align to PDS.
Place of Birth	New element	Added to person demographics section to align to PDS.
FHIR Target	New column added	To align to UK core FHIR profiles https://simplifier.net/guide/HL7FHIRUKCoreR4Release1/Home/Profiles/ProfileUKCore-Patient

### Section: Individual Requirements

Elements	Update	Detail
Individual Requirement	Element renamed to 'Reasonable adjustment'	Updated to align SCR
Individual Requirement	New element added	Reasonable adjustment flag to align

with SCR ### Section: Participation in Research

Elements	Update	Detail
Participation in research	New element added	Identification code description: Identification code of research study

### Section: Procedures and Therapies (previously ‘Procedures’)

Elements	Update	Detail
Procedures	Section renamed to 'Procedures and therapies' Description updated Elements decomposed Metadata added	Section description: "The details of any procedures performed. Includes both psychological and medical therapies and procedures (e.g. cognitive behaviour therapy, hip replacement)"

### Section: Risks

Elements	Update	Detail
Risk type	New element added Other sections removed to improve modelling: - Risk to others Risk from others Risk to self Risk of infection	Includes start and end dates for risks.

### Section: Allergies and Adverse Reactions

Elements	Update	Detail
Allergies and adverse reactions	1. Elements decomposed
Allergies and adverse reactions > 'Reaction details' cluster	Two new elements added Metadata elements added	New elements: - Substance - Route of exposure - Allergy end date - Comment
FHIR Target	New column added	To align to UK core FHIR profiles https://simplifier.net/guide/HL7FHIRUKCoreR4Release1/Home/
		Profiles/ProfileUKCore-AllergyIntolerance

### Section: Medications and Medical Devices

	Elements	Update
Medications and Medical Devices	1. 'Medications discontinued' cluster > 'Description of Amendment' element removed.	'Comment' section retained and description updated to include reference to amendments. New element Medications and Medical Devices > Medication Item cluster > 'Over the counter medication flag' 'Medication prescribed by' 'Medication trade family'
	2. New elements added	Medications and Medical Devices > Medication Item cluster > Structured dose direction cluster > 'Dose type' 'Maxdoseperperiod' 'Maxdoseperadministration'
	3. Existing elements decomposed.
FHIR Target	New column added	To align to UK core FHIR profiles :- https://simplifier.net/guide/HL7FHIRUKCoreR4Release1/Home/Profiles/ProfileUKCore-MedicationStatement

### Section: About Me

About Me

Includes 8 new elements

Description:
New elements:
- What is most important to me
- People who are important to me
- How I communicate and how to communicate with me
- My wellness
- Please do and please don't
- How and when to support me
- Also worth knowing about me
- Supported to write this by

### Section: Care and Support Plan

Elements	Update	Detail
Care and support plan	3 new elements	New elements: - Goal importance score - Goal status - Stage goal outcome

### Section: Services and care

Elements	Update	Detail
Services and care	4 new elements	New elements: Social care package name Social care package type Local authority Care funding source

### Section: Equipment and adaptations

Elements	Update	Detail
Equipment and adaptions	New section added	The name of the equipment (e.g. 'Keysafe', 'Handrail' 'Lifeline Alarm', etc.) New elements: Equipment name

### Section: Primary support reason

Elements	Update	Detail
Primary support reason	New section added	To align with Social care standards New elements: Primary support reason Active Start date End date

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false

Review & Status

Contributor:

Professional Record Standards Body (PRSB)

Licenced ID:

Open Government Licence v3.0 (OGL 3.0) https://www.nationalarchives.gov.uk/doc/open-government-licence/version/3/

Licenced Title:

This standard is owned by NHS England and is made available for reuse or amendment under the Open Government Licence v3.0 (OGL 3.0).

Dataset Identifier:

22cfd7bc-e98b-4dd5-bea8-0cb9f568efaf

Mandated:

Status:

active

Origin

Name:

NHSE-SD Data Catalogue

URL:

https://sd-asc-ui-sd.metadata.works

Link:

https://sd-asc-ui-sd.metadata.works/browser/dataset/286841/0