ISB 1605 Accessible Information

ISB 1605 Accessible Information

ISB 1605 Accessible Information Standard Specification [Draft]

Accessible Information Specification V.0.7 Draft Page 2 of 36 NHS England INFORMATION READER BOX Directorate Medical Operations Patients and Information Nursing Policy Commissioning Development Finance Human Resources Publications Gateway Reference: 02068 Document Purpose Document Name Author Publication Date Target Audience Additional Circulation List Description Cross Reference Action Required Timing / Deadlines (if applicable) Making health and social care information accessible: Specification Draft Superseded Docs (if applicable) Contact Details for further information Document Status www.england.nhs.uk/accessibleinfo This is a controlled document. Whilst this document may be printed, the electronic version posted on the intranet is the controlled copy. Any printed copies of this document are not controlled. As a controlled document, this document should not be saved onto local or network drives but should always be accessed from the intranet Consultations LS2 7UE 0113 825 1324 Sarah Marsay Public Voice Team (Accessible Information) NHS England 5E01, Quarry House, Quarry Hill, Leeds NHS England is developing a new accessible information standard which will make sure that people can understand the information they are given about their health and care. Now NHS England is undertaking a consultation with organisations and the public on the draft standard. This document details what organisations and IT system suppliers are required to do.

N/A NHS England, Patients & Information 12 August 2014 CCG Accountable Officers, Care Trust CEs, Foundation Trust CEs , Medical Directors, Directors of Nursing, Directors of Adult SSs, NHS England Regional Directors, Allied Health Professionals, GPs, Communications Leads Engagement partners N/A N/A N/A

Accessible Information Specification V.0.7 Draft Page 3 of 36 Amendment History: Version Date Amendment History 0.1 20.03.14 First draft 0.2 28.05.14 Second draft for comment 0.3 30.05.14 Third draft reflecting comments on earlier versions 0.4 04.06.14 Fourth draft reflecting comments on earlier versions 0.5 16.06.14 Fifth draft reflecting Advisory Group comments 0.6 18.07.14 Sixth draft reflecting comments at appraisal 0.7 05.08.14 Seventh draft reflecting comments from ISAS and social care leads Approvals: Name Role Organisation Version Date Olivia Butterworth Head of Public Voice / Programme Lead NHS England 0.6 18.07.14 Giles Wilmore Director of Patient and Public Voice and Information / Senior Responsible Officer NHS England 0.6 18.07.14 Phil Walker Head of Information Governance and Standards Policy Department of Health 0.6 18.07.14 Copyright: You may re-use this information (excluding logos) free of charge in any format or medium. Where we have identified any third-party copyright information, you will need to obtain permission from the copyright holders concerned. Authorised use: The standard, associated guidance and this Specification remain the sole and exclusive property of NHS England, and may only be reproduced where there is explicit reference to the ownership of NHS England.

Accessible Information Specification V.0.7 Draft Page 4 of 36 Contents Glossary of terms . 5 1 Overview . 8 2 Summary . 9 3 Related and supporting documents and standards . 11 4 4.1 Related and supporting documents . 11 4.2 Related standards . 11 4.3 Related professional standards . 12 Health and care organisations . 13 5 5.1 Scope and definitions . 13 5.2 Requirements . 14 5.3 Conformance criteria . 17 IT system suppliers . 20 6 6.1 Requirements . 20 6.2 Conformance criteria . 21 Overview of requirements . 23 7 Scope . 24 8 8.1 Overview of scope . 24 8.2 In scope . 24 8.3 Out of scope . 25 8.3.1 Key aspects determined to be out of the scope of this standard . 25 8.3.2 Explanatory note about foreign languages . 26 8.3.3 Explanatory note about health and social care websites . 26 Details of the standard . 27 9 9.1 Recording of data . 27 9.2 Meeting of needs . 28 9.2.1 Delivery requirements / response times and procedures . 28 9.2.2 Quality and governance . 29 Implementation . 31 10 10.1 Concept of operation . 31 10.2 Working practices . 31 10.3 Data flows . 31 10.4 Mandatory fields . 32 10.5 Terminology and coding . 32 10.6 Interface design . 33 10.7 Clinical safety . 33 10.8 Information governance . 33 10.9 Clinical and social care governance . 34 10.10 Implementation timeframe . 34 10.11 State of readiness . 35 Maintenance . 36 11

Glossary of terms 1 Term Acronym Definition Advocate A person who supports someone who may otherwise find it difficult to communicate or to express their point of view. Advocates can support people to make choices, ask questions and to say what they think. Accessible information Information which is able to be read or received and understood by the individual or group for which it is intended. Alternative format Information provided in an alternative to standard printed or handwritten English, for example large print, braille or email.

Braille A tactile reading format used by people who are blind, deafblind or who have some visual loss. Readers use their fingers to ‘read’ or identify raised dots representing letters and numbers. Although originally intended (and still used) for the purpose of information being documented on paper, braille can now be used as a digital aid to conversation, with some smartphones offering braille displays. British Sign Language BSL BSL is a visual-gestural language that is the first or preferred language of many d/Deaf people and some deafblind people; it has its own grammar and principles, which differ from English. BSL interpreter A person skilled in interpreting between BSL and English. A type of communication support which may be needed by a person who is d/Deaf or deafblind. Communication tool / communication aid A tool, device or document used to support effective communication with a disabled person. They may be generic or specific / bespoke to an individual. They often use symbols and / or pictures. They range from a simple paper chart to complex computer-aided or electronic devices.

d/Deaf A person who identifies as being deaf with a lowercase d is indicating that they have a significant hearing impairment. Many deaf people have lost their hearing later in life and as such may be able to speak and / or read English to the same extent as a hearing person. A person who identifies as being Deaf with an uppercase D is indicating that they are culturally Deaf and belong to the Deaf community. Most Deaf people are sign language users who have been deaf all of their lives. For most Deaf people, English is a second language and as such they may have a limited ability to read, write or speak English. Deafblind Deafblindness is a combined hearing and sight loss that causes problems with mobility, communication and access to information.

Accessible Information Specification V.0.7 Draft Page 6 of 36 Disability The Equality Act 2010 defines disability as follows, “A person has a disability for the purposes of the Act if he or she has a physical or mental impairment and the impairment has a substantial and long-term adverse effect on his or her ability to carry out normal day to day activities.” This term also has an existing Data Dictionary definition Disabled people Article 1 of the United Nations Convention on the Rights of Persons with Disabilities has the following definition, “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” Easy read Written information in an ‘easy read’ format in which straightforward words and phrases are used supported by pictures, diagrams, symbols and / or photographs to aid understanding and to illustrate the text.

Impairment The Equality and Human Rights Commission defines impairment as follows, “A physical impairment is a condition affecting the body, perhaps through sight or hearing loss, a mobility difficulty or a health condition. A mental impairment is a condition affecting ‘mental functioning’, for example a learning disability or mental health condition…” Interpreter A person able to transfer meaning from one spoken or signed language into another signed or spoken language. Large print Printed information enlarged or otherwise reformatted to be provided in a larger font size. A form of accessible information or alternative format which may be needed by a person who is blind or has some visual loss. Different font sizes are needed by different people. Note it is the font or word size which needs to be larger and not the paper size. Learning disability LD This term has an existing Data Dictionary definition and is also defined by the Department of Health in Valuing People (2001). People with learning disabilities have life-long development needs and have difficulty with certain cognitive skills, although this varies greatly among different individuals. Societal barriers continue to hinder the full and effective participation of people with learning disabilities on an equal basis with others. Lipreading A way of understanding or supporting understanding of speech by visually interpreting the lip and facial movements of the speaker. Lipreading is used by some people who are d/Deaf or have some hearing loss and by some deafblind people.

Accessible Information Specification V.0.7 Draft Page 7 of 36 Note taker In the context of accessible information, a notetaker produces a set of notes for people who are able to read English but need communication support, for example because they are d/Deaf. Manual notetakers take handwritten notes and electronic notetakers type a summary of what is being said onto a laptop computer, which can then be read on screen. Patient Administration System PAS Mainly used in hospital settings, and especially by NHS trusts and foundation trusts, Patient Administration Systems are IT systems used to record patients contact / personal details and manage their interactions with the hospital, for example referrals and appointments. Read codes Read Codes are a coded thesaurus of clinical terms representing the clinical terminology system used in general practice. Read Codes have two versions: Version 2 (v2) and version 3 (CTV3 or v3), which are the basic means by which clinicians record patient findings and procedures in health and social care IT systems across primary and secondary care. Speech-to-text- reporter STTR A STTR types a verbatim (word for word) account of what is being said and the information appears on screen in real time for users to read. A transcript may be available and typed text can also be presented in alternative formats. This is a type of communication support which may be needed by a person who is d/Deaf and able to read English.

Systematised Nomenclature of Medicine Clinical Terms SNOMED CT Classification of medical terms providing codes, terms, synonyms and definitions used. Text Relay Text Relay is a national text to voice relay service run by British Telecom (BT). It allows people with hearing loss or speech impairment to use a textphone to communicate and access any services that are available on standard telephone systems. Translator A person able to translate the written word into a different signed, spoken or written language. For example a sign language translator is able to translate written documents into sign language.

Accessible Information Specification V.0.7 Draft Page 8 of 36 Overview 2 This document details the requirements, structures and definitions for the national information standard ISB 1605 Accessible Information – the ‘accessible information standard.’ The standard identifies and specifies information which MUST be recorded about the information and communication support needs of patients and service users (and where appropriate their carers or parents) where these relate to or are caused by a disability, impairment or sensory loss. It also identifies and specifies actions which SHOULD and MUST be taken in order to meet those needs.

The accessible information standard is to be implemented across the publicly-funded health and adult social care system. It aims to establish:  Routine systems and processes to identify if a patient or service user (and / or where appropriate their carer or parent) has communication or information needs relating to a disability, impairment or sensory loss, and, if so, of their nature or type;  Routine data collection of the information and communication needs of patients and service users (and where appropriate their carers and parents), using a defined and consistent set of coded data items / categories;  Alert, prompt or flagging systems to highlight a record of communication and / or information needs to relevant staff when the individual has subsequent interaction or contact with the service;  Systems – including human processes and auto-generation systems – such that correspondence is sent to patients, service users, carers and parents in an appropriate and suitable format for them;  Provision of information in alternative formats and arrangement or provision of communication support as an accepted and essential element of ‘business as usual’ and of safe and effective patient or service user care.

Accessible Information Specification V.0.7 Draft Page 9 of 36 Summary 3 Standard Standard Number ISB 1605 Title Accessible Information Type Operational Description The Accessible Information Standard will require health and social care organisations to identify and record the information and communication support needs of patients and service users (and where appropriate their carers or parents) where these needs relate to or are caused by a disability, impairment or sensory loss. The standard will also require organisations to take action to ensure that those needs are met.

It will be implemented through changes to IT and administrative systems to enable consistent identification and recording of disabled patients’, service users’, carers’ and parents’ information and communication support needs, and will require changes to the processes followed by health and social care organisations in recording and responding to those needs. In acting upon recorded information and communication support needs, organisations will be required to provide personal correspondence (such as appointment letters) and patient information (such as leaflets) in alternative formats (such as braille and ‘easy read,’ or via email) and communication support for appointments (such as British Sign Language interpreters).

Applies to All commissioners and providers of NHS and local authority-funded social care services, including, but not limited to:  NHS Trusts including Foundation Trusts, Acute Trusts, Community Trusts, Care Trusts, Ambulance Trusts  Clinical commissioning groups  NHS Walk-in Centres, Out-of-Hours Services, Minor Injuries Units and Urgent Care Centres  Independent contractors providing NHS services – GP practices, optometrists, pharmacists, dentists  NHS England including national, regional and area teams  Non-NHS providers of NHS and social care services including organisations from the voluntary and independent sectors  Commissioning support organisations  Local Health and Wellbeing Boards  Local authorities – public health and social care  Department of Health  Public Health England

Accessible Information Specification V.0.7 Draft Page 10 of 36 Release Release Number Amd 8/2013 Title Initial Standard Description Initial Release Stage Draft Proposed Implementation Date 31 March 2016

Accessible Information Specification V.0.7 Draft Page 11 of 36 Related and supporting documents and standards 4 4.1 Related and supporting documents This Specification should be read in conjunction with the following documents: Title Version Date The Equality Act 2010 Original 08.04.10 The NHS Constitution March 2013 26.03.13 Mental Capacity Act 2005 April 2005 07.04.05 Mental Capacity Act 2005 Code of Practice April 2007 23.04.07 Health and Social Care Act 2012 March 2012 27.03.12 ISB Information Governance baselines Final ISB 1605 Accessible Information Main Submission Draft 16.06.14 ISB 1605 Accessible Information Clinical Safety Case Draft 16.06.14 ISB 1605 Accessible Information Implementation Plan Draft 16.06.14 ISB 1605 Accessible Information Implementation Guidance Draft 16.06.14 ISB 1605 Accessible Information Maintenance Plan Draft 16.06.14 ISB 1605 Accessible Information Data Set Specification Draft 16.06.14 4.2 Related standards This Specification should be read in conjunction with the following standards: Reference Title Version Date ISB 1512 Information Governance Standards Framework Amd 159/2010 10.11.10 ISB 0129 Application of Patient Safety Risk Management to the Manufacture of Health Software (DSCN 14/2009) ISB 0160 Application of Patient Safety Risk Management to the Deployment and Use of Health Software (DSCN 18/2009) ISB 1552 & 1553 Read Codes ISB 0034 SNOMED CT ISO / IEC 27001: 2005 Information technology -- Security techniques - - Information security management systems - Requirements ISB 1512 Personalised Information Giving Data Set Withdrawn ISB 0011 Mental Health and Learning Disabilities Data Set (MHLDDS) Amd 3/2013 22.01.14

Accessible Information Specification V.0.7 Draft Page 12 of 36 4.3 Related professional standards Title Version Date Standards for the clinical structure and content of patient records. Academy of Medical Royal Colleges and HSCIC. July 2013 14.05.13 Royal College of Physicians Clinical Documentation and Generic Record Standards programme Royal College of Physicians National Ambulance Documentation Standard Third draft January 2014 Good Medical Practice 2013 The code: standards of conduct, performance and ethics for nurses and midwives (2008) 2008 Codes of Practice For Social Care Workers (2010) 2010

Accessible Information Specification V.0.7 Draft Page 13 of 36 Health and care organisations 5 5.1 Scope and definitions The key words MUST, SHOULD and MAY are defined in the information standards development methodology. Other terms used below and elsewhere in this Specification are defined as follows: Term Definition Organisations Organisations to which the accessible information standard applies, that is:  NHS bodies including (but not limited to) NHS Trusts, NHS Foundation Trusts and clinical commissioning groups;  Adult social services or social care bodies i.e. local authorities;  Providers of publicly-funded (NHS) health care including (but not limited to) independent contractors and private sector providers;  Providers of publicly-funded adult social care or services including (but not limited to) care homes, nursing homes and day care.

Professionals Employees or contractors of organisations to which the accessible information standard applies, i.e. people providing services in a professional capacity for or on behalf of organisations. Relevant staff Employees of organisations to which the accessible information standard applies who have a patient or service user contact role and / or responsibility for accessing or utilising patient / service user records, whether this is in a clinical or non-clinical capacity. Individual A patient or service user, or the parent or carer of a patient or service user, with an information or communication support need relating to a disability, impairment or sensory loss. Carer A patient or service user’s main informal carer (defined by ISB 1580: End of Life Care Co-ordination: Core Content as “The individual, excluding paid carers or carers from voluntary agencies, identified by the person to hold major responsibility for providing their informal care and support.” ISB 1580 also includes a note that, “The main informal carer will be identified by the person’s GP or key worker if the person lacks capacity to identify one themselves”). The accessible information standard includes within its scope the needs of a patient or service user’s main informal carer, as well as other important or regular informal (unpaid) carers.

Parent The legally recognised parent or guardian of an individual under 18 years of age or, where the individual may lack capacity, of any age.

Accessible Information Specification V.0.7 Draft Page 14 of 36 An individual with parental responsibility or delegated authority for a child. Highly visible A recording of an individual’s information or communication support needs should be ‘highly visible’ to relevant staff and professionals (see 5.2 below). In the context of this standard ‘highly visible’ means:  Obvious and overtly apparent; and  Visible on the cover, title and / or ‘front page’ of a document, file or electronic record; and  Visible on every page of an electronic record (e.g. as an alert, flag or banner); and / or  Highlighted in some way on a paper record so as to draw attention to the information as being of particular importance, e.g. in a larger or bold font, and / or a different colour. 5.2 Requirements # Requirement Implementing the Standard: Procedures, Systems and Governance 1. Organisations MUST review their current patient or service user administration and record systems, platforms, processes and documentation and, if necessary, update, change or replace those systems so that they conform to the standard by 31 March 2016.

2. From 01 April 2015, organisations developing, implementing and / or contracting for new electronic patient or service user record or administration systems MUST specify compliance to this information standard in IT systems and software supplier contracts. 3. Information governance leads MUST review the information governance implications of implementation of the standard within their organisation(s), and if necessary plan for and implement mitigating actions to address any identified risks such that they are as low as reasonably possible. 4. Clinical governance, social care governance and IT safety leads MUST consider and take mitigating action to address the identified hazards as outlined in the Clinical Safety Case and any other locally identified risks or hazards associated with implementation of the standard such that they are as low as reasonably possible.

5. Organisations SHOULD refer to and utilise the Implementation Guidance accompanying this standard to steer decisions. 6. Clinical leads and adult social services team leaders / service managers SHOULD review the Implementation Guidance accompanying this standard and consider whether changes are required to current professional practice, business practices, training and local policies / pathways. 7. Organisations MUST establish a clear, stepwise approach (or procedure) which all professionals and relevant staff are supported to follow to enable consistent, effective compliance with the standard as part of ‘business as usual.’ This MUST include a clear procedure for the accurate and consistent identification, recording, and flagging of the data items or categories defined by the standard. It MUST also include a clear and locally well-known procedure for ensuring that such needs are met.

Accessible Information Specification V.0.7 Draft Page 15 of 36 Implementing the Standard: Workforce, Human Resources and Training 8. Organisations MUST review the ability of their workforce to implement the standard and, if necessary, plan for and implement a training and / or awareness programme so that conformance with the standard is achieved by 31 March 2016. 9. Organisations MUST provide, arrange for and / or support relevant staff to receive any training which is identified as locally necessary to enable effective implementation of the standard.

10. Organisations SHOULD support their staff to access training and resources offered by NHS England to support implementation of the standard (see the Implementation Guidance). Ongoing Compliance with the Standard: Identification and Recording of Needs 11. Professionals MUST identify and record the information and / or communication needs of their patients and service users – and where appropriate their carers or parents – where such needs relate to or are caused by a disability, impairment or sensory loss, and:  Such information MUST be recorded as part of the individual’s first or next interaction with the service.

 In electronic systems which use SNOMED-CT or Read codes, such information MUST be recorded using the coded data items associated with the subsets defined by this standard.  In electronic systems which use other coding systems or terminologies, such information MUST be recorded in line with the human readable definitions / categories associated with the data items. 12. Professionals and relevant staff SHOULD proactively prompt individuals to identify that they have information and / or communication needs, and support them to describe the type of alternative format and / or support that they need, at their first or next interaction with the service.

13. Organisations MUST ensure that the information and / or communication needs of patients and service users – and where appropriate their carers or parents – where such needs relate to or are caused by a disability, impairment or sensory loss, are identified and recorded:  Upon registration with the service;  As part of the initial contact or interaction with the service;  In an emergency or urgent care scenario, as soon as is practical after initial interaction with the service;  At first appointment;  Upon receipt of a ‘certificate of vision impairment’ from an ophthalmologist;  Upon receipt of notification that a person has a sensory loss or learning disability;  When a diagnosis or symptoms indicate a new or revised communication or information support need;  As part of a health check;  As part of care or support planning. This MAY require changes to existing electronic and paper recording systems and / or documentation. Electronic recording and administration systems MUST enable recording of information and communication needs in line with

Accessible Information Specification V.0.7 Draft Page 16 of 36 the data items or categories associated with the subsets defined by the standard. Paper-based systems and documentation MUST enable recording of needs in line with the human readable definitions of the data items associated with the subsets defined by the standard. Systems and documentation MUST be formatted so as to make any record of information or communication needs highly visible. Ongoing Compliance with the Standard: Verification of Accuracy of Data 14. Organisations MUST ensure that information recorded about individuals’ information and communication support needs is accurate. Systems for edit checking / quality assurance of data SHOULD be put in place, including establishment of alerts or mechanisms to prevent or discourage the recording of mutually incompatible data in related fields.

15. Organisations MUST ensure that data recorded about individuals’ information and communication support needs is current. Systems MUST enable records made about individuals’ information and communication support needs to be revised and SHOULD include prompts for review at appropriate points. 16. The individual patient, service user, carer or parent SHOULD be aware of the exact information recorded about their information and communication support needs, including to verify accuracy. 17. Where online systems enable patients or service users to access their own records, such systems:  MUST enable individuals to review the data recorded about their communication and information needs and request changes if necessary; and, where necessary functionality exists,  SHOULD enable individuals to record their own communication and information needs using this system where appropriate. 18. Professionals SHOULD review, and if necessary update, data recorded about individuals’ communication and information needs alongside verification and revision of data held in other demographic fields.

Ongoing Compliance with the Standard: Supporting Documents 19. Where an individual has a care plan, the organisation responsible for developing or holding the plan MUST ensure that it includes information about the individual’s information and / or communication support needs, recorded in line with the standard. 20. Where used, local documents used to support professionals in understanding the information and communication support needs of individuals, such as health passports, learning disability passports, ‘my health need’ cards and ‘NHS help cards’ MUST include information about the individual’s information and / or communication support needs (where they exist).

Ongoing Compliance with the Standard: Flagging and Prompts to Action 21. Organisations MUST ensure that electronic patient or service user administration and record systems automatically identify a recorded need for information or correspondence in an alternative format and / or communication support, and ‘flag,’ prompt or otherwise make this highly visible to staff whenever the record is accessed. 22. Organisations MUST ensure that electronic patient or service user administration and record systems automatically identify a recorded need for information or correspondence in an alternative format and in response:  Automatically generate correspondence or information in an alternative format (preferred); OR

Accessible Information Specification V.0.7 Draft Page 17 of 36  Enable staff to manually generate correspondence in an alternative format upon receipt of an alert. Organisations MUST ensure that a standard print letter is not sent to an individual for whom this is not an appropriate or accessible format (due to automatic generation or any other reason). Ongoing Compliance with the Standard: Meeting of Individuals’ Needs 23. Organisations MUST ensure that patients, service users, carers and parents with information and / or communication needs related to or caused by a disability, impairment or sensory loss have these needs met. 24. Organisations MUST ensure that patients, service users, carers and parents with information needs (a need for information in a non-standard print format) are sent or otherwise provided with information, including correspondence, in formats which are appropriate, accessible and that they are able to understand (in line with their identified needs).

25. Organisations MUST take steps to ensure that communication support, professional communication support and information in alternative formats can be provided promptly and without unreasonable delay. This includes making use of remote, virtual and telecommunications solutions. Assessment and Assurance of Compliance with the Standard 26. Organisations MUST prepare and publish or display an accessible communications policy or similar which outlines how they will identify, record, share and meet the information and communication needs of patients, service users, carers and parents, in line with this standard. 27. Quality assurance MUST be undertaken by organisations to ensure that the type of communication support or alternative format provided to patients, service users, carers and parents is effective in meeting those needs. Such assurance MAY be undertaken in partnership with one or more patient groups. 28. Individuals MUST be encouraged and enabled to provide feedback about their experience of receiving information in an appropriate format or communication support, including having access to an accessible complaints policy. 5.3 Conformance criteria  All MUST requirements must be met.  All SHOULD requirements must be met or there must be a credible, legitimate reason documented for why they have not been.

 MAY requirements are optional. The following specific conformance criteria should be used to demonstrate conformance. Conformance criteria Implementing the Standard: Procedures, Systems and Governance Patient / service user administration and record systems, platforms, processes and documentation adhere to the accessible information standard. Contracts for patient / service user record and administration systems include the requirement for the system to adhere to the accessible information standard. Information governance risks associated with implementation of the standard have been identified and mitigating actions completed such that residual risks are as low

Accessible Information Specification V.0.7 Draft Page 18 of 36 as reasonably possible. Clinical and other safety risks associated with implementation of the standard have been identified and mitigating actions completed such that residual risks are as low as reasonably possible. Implementation Guidance accompanying the standard has been read and used to inform local decision-making. Following assessment, any actions required to change current professional practice, business practices, training and / or local policies / pathways to enable implementation of and compliance with the standard have been completed. A clear, stepwise approach (or procedure) to ensure compliance with the standard as part of ‘business as usual’ is in place and being followed by professionals and relevant staff. There is a high level of awareness of the approach / procedure amongst the workforce.

Implementing the Standard: Workforce, Human Resources and Training Where identified as necessary following local assessment of the workforce, a programme of staff training and / or awareness-raising has been completed. Staff competency / training records indicate that relevant staff and professionals have received any training identified as locally necessary to enable effective implementation of the standard, including accessing training and resources offered by NHS England to support implementation of the standard where appropriate. Ongoing Compliance with the Standard: Identification and Recording of Needs Patient / service user records include consistent population of fields relating to information and communication support needs. Staff competency / training records indicate that relevant staff and professionals have received any training identified as locally necessary to enable effective implementation of the standard. Record systems and relevant documentation enable recording of information and communication needs in line with the standard, and are formatted so as to make any record of information or communication needs highly visible. Ongoing Compliance with the Standard: Verification of Accuracy of Data Quality assurance / edit checking processes are in place to enable verification of the accuracy of data recorded about individuals’ information and communication needs. Mechanisms are in place to alert, prevent or discourage the population of mutually incompatible data fields associated with individuals’ information and communication needs (in line with best practice).

Systems enable revision / amendment of records made about individuals’ information and communication support needs and, where possible, include prompts for review at appropriate points. Feedback from patient surveys, PALS, local Healthwatch or other sources demonstrates that individuals are aware of the exact nature of the information which has been recorded about their information and / or communication needs. Where online systems enable patients or service users to access their own records, there is evidence that individuals have viewed and / or contributed to their records with regards to information and communication needs.

Data recorded about individuals’ information and communication needs is reviewed and refreshed alongside other data held in demographic fields. Ongoing Compliance with the Standard: Supporting Documents Care plans include information about individuals’ information and communication needs, where appropriate / relevant. Local documents used to support professionals in understanding the information and

Accessible Information Specification V.0.7 Draft Page 19 of 36 communication support needs of individuals (where used) include information about individuals’ information and communication needs, where appropriate / relevant. Ongoing Compliance with the Standard: Flagging and Prompts to Action Electronic patient or service user administration and record systems automatically identify a recorded need for information or correspondence in an alternative format and / or communication support, and ‘flag,’ prompt or otherwise make this highly visible to staff whenever the record is accessed.

Electronic patient or service user administration and record systems automatically identify relevant recorded needs and either automatically generate correspondence or information in an alternative format or enable staff to manually generate correspondence in an alternative format upon receipt of an alert. Systems are in place to ensure that a standard print letter is not sent to an individual for whom this is not an appropriate or accessible format. Ongoing Compliance with the Standard: Meeting of Individuals’ Needs Feedback from patient surveys, PALS, local Healthwatch and / or other sources demonstrates that individuals with information and / or communication needs have had those needs routinely and regularly met.

Records show that individuals with information needs have been sent or provided with information, including correspondence, in formats which are appropriate, accessible and that they are able to understand (in line with their identified needs). There are policies and procedures in place to enable communication support, professional communication support and information in alternative formats to be provided promptly and without unreasonable delay. Staff awareness of policies and procedures with regards to provision of communication support and information in alternative formats is high and they are used as part of ‘business as usual.’ Assessment and Assurance of Compliance with the Standard The organisation has a published and publicly available accessible communication policy which outlines how the information and communication needs of patients, service users, carers and parents, will be identified, recorded, and met. Feedback from patient surveys, PALS, local Healthwatch or other sources demonstrates that individuals with relevant needs have received communication support and / or information in alternative formats which is of a suitable quality and is effective in meeting those needs.

Feedback has been received from individuals with communication and information needs. There are mechanisms in place for individuals to make a complaint, raise a concern or pass on feedback in alternative formats and with communication support.

Accessible Information Specification V.0.7 Draft Page 20 of 36 IT system suppliers 6 6.1 Requirements In the table below ‘systems’ refers to “patient or service user record and / or administration systems supplied to or used by providers or commissioners of NHS or adult social care.” # Requirement Overview 1. Suppliers of patient or service user record and / or administration systems to providers and commissioners of NHS and adult social care MUST update, change or replace those systems so that they conform to the standard by 31 March 2016.

Design: Safety and Accessibility 2. Systems used for the recording of individuals’ information and communication needs SHOULD be designed and built with consideration for the clinical safety risks identified in the Clinical Safety Case published alongside this Specification. 3. Systems used for the recording of individuals’ information and communication needs SHOULD be accessible for those with disabilities, and SHOULD comply with guidance set out in the Government Service Design Manual for accessibility. Specific accessibility needs of the users within a local organisation using the system SHOULD be taken into account.

4. Systems used for the recording of individuals’ information and communication needs MAY allow the patient or service user (or their carer or parent) to access their own record electronically, and to have editing rights for specific fields relating to information and communication. Functionality: Data Items 5. Systems MUST enable recording of all of the data items or categories associated with the subsets defined by the accessible information standard, in their specified format. Local systems MAY hold more information than is required by the accessible information standard.

6. Systems MUST alert users when none of the data items / categories in any one of the subsets associated with the standard have been selected. 7. Systems SHOULD support edit checking / quality assurance of data recorded about individuals’ information and communication needs. This MAY include generating an alert or preventing users from populating mutually incompatible data fields (in line with best practice). 8. The system MUST allow for changes to the data items associated with the standard over time, including following release of new or amended SNOMED-CT or Read Codes (where used by relevant systems), and enabling any locally defined additional information to be captured.

Functionality: Notification or ‘Flagging’ 9. Systems MUST include functionality to notify staff involved – or to be involved in the near future – in the administration or care of patients or service users of their communication and information needs. 10. The system MUST automatically identify a recorded need for information or correspondence in an alternative format and / or communication support, and ‘flag,’ prompt or otherwise make this highly visible to staff whenever the record is accessed.

Accessible Information Specification V.0.7 Draft Page 21 of 36 Functionality: Auto-Generation 11. Where systems automatically generate correspondence, the system MUST automatically identify a recorded need for information or correspondence in an alternative format and in response:  Automatically generate correspondence or information in an alternative format (preferred); OR  Enable staff to manually generate correspondence in an alternative format (upon receipt of an alert); AND  Not produce the standard printed output for sending to the individual.. Functionality: Review 12. The system MUST enable records made about individuals’ information and communication support needs to be revised / amended.

13. The system SHOULD prompt for a review of data recorded about individuals’ information and communication needs alongside and concurrent with review of data held in other demographic fields. Functionality: Extraction of Data 14. The system MUST enable all user-entered and necessary reference data about individuals’ information and communication needs to be extracted from the system in patient-identifiable form in a standard format (e.g. CSV or XML) to allow for local analysis. 15. It SHOULD be possible to extract effectively anonymised or pseudonymised data from the system to support secondary analysis.

6.2 Conformance criteria This section describes the tests that can be applied to indicate that the information standard is being used correctly by an IT system supplier. In this context ‘systems’ refers to “patient or service user record and / or administration systems supplied to or used by providers or commissioners of NHS or adult social care.” Conformance criteria Design: Safety and Accessibility Systems used for the recording of individuals’ information and communication needs have been designed and built with consideration for the clinical safety risks identified in the Clinical Safety Case published alongside this Specification.

Systems are accessible for those with disabilities, and comply with guidance set out in the Government Service Design Manual for accessibility. The specific accessibility needs of the users within a local organisation using the system have been taken into account. Where online systems and local procedures enable patients or service users to access their own records, the system allows the patient or service user (or their carer or parent) to access the data recorded about their information and / or communication needs.

Where online systems and local procedures enable patients or service users to edit their own records, the system allows the patient or service user (or their carer or parent) to edit fields relating to information and communication. Functionality: Data Items Systems enable recording of all of the data items or categories associated with

Accessible Information Specification V.0.7 Draft Page 22 of 36 the subsets defined by the accessible information standard in their specified format. Systems alert users when none of the data items or categories in any one of the subsets associated with the standard have been selected. Systems support edit checking / quality assurance of data recorded about individuals’ information and communication needs. Systems generate an alert or prevent or discourage users from populating mutually incompatible data fields when recording individuals’ information and communication needs (in line with best practice).

Systems allow for changes to the data items associated with the standard over time, including following release of new or amended SNOMED-CT or Read Codes (where used by relevant systems), and enable any locally defined additional information to be captured. Functionality: Notification or ‘Flagging’ Systems include functionality to notify staff involved – or to be involved in the near future – in the administration or care of patients or service users of their communication and information needs.

Systems automatically identify a recorded need for information or correspondence in an alternative format and / or communication support, and ‘flag,’ prompt or otherwise make this highly visible to staff whenever the record is accessed. Functionality: Auto-Generation Where systems automatically generate correspondence, the system automatically identifies a recorded need for information or correspondence in an alternative format and in response either automatically generates correspondence or information in an alternative format or enables staff to manually generate correspondence in an alternative format (upon receipt of an alert).

Where systems automatically generate correspondence, the system automatically identifies a recorded need for information or correspondence in an alternative format and in response does not produce the standard printed output for sending to the individual, and alerts staff accordingly. Functionality: Review The system allows for records made about individuals’ information and communication support needs to be revised or amended. The system prompts for a review of data held about individuals’ information and communication needs alongside and concurrent with review of data held in other demographic fields.

Functionality: Extraction of Data Systems enable extraction of data about individuals’ recorded information and communication needs to allow for local analysis. Systems enable extraction of effectively anonymised or pseudonymised data from the system to support secondary analysis.

Accessible Information Specification V.0.7 Draft Page 23 of 36 Overview of requirements 7 When implemented in systems the accessible information standard must support the following requirements: i. Consistent and routine identification of individuals’ information and communication support needs where they relate to or are caused by a disability, impairment or sensory loss. This includes identification of whether the individual has any such needs, and, if they do, of their nature or type. It includes the identification of patients’ or service users’ needs, and where appropriate, the needs of their parent(s) and / or carer(s). The Implementation Guidance supports staff in having structured conversations with people about their information and / or communication needs, and provides advice around recording, including guidance about recording of carers’ needs. ii. Staff involved in patient or service user administration and / or the care or support of an individual must be informed of the information and / or communication needs which have been recorded about that person. Such needs should be highly visible to all relevant staff as part of electronic and / or paper records. IT systems should generate alerts, prompts or ‘flags’ to draw attention to the fact that a record has been made of information and / or communication needs, and actions to be taken to ensure that the recorded need(s) can be met.

iii. Local policies, procedures and financial arrangements (including contracts) must be in place to enable staff and organisations to meet individuals’ information and communication support needs in a consistent and timely manner. The accuracy and quality of translated information, communication support and interpretation must be assured. Patient or service user care, treatment or attention must not be refused, delayed or put at risk due to delays or difficulties in accessing or arranging accessible information or communication support.

The primary purpose of the accessible information standard is to support effective and safe health and social care. Standardised, unambiguous record content also supports extraction and analysis of data for secondary uses such as planning, delivery and monitoring of care. This helps inform priorities and direction for quality improvements. Note that this potential use is not mandated or directed by this standard which is focused on communication and co-ordination between those involved in a person’s care. However, consideration should be given to requirements for reporting when implementing or changing systems to support care pathways including the need to understand any variations in care and outcomes due to factors such as communication support or alternative format use. Reporting functionality will also enable assessment of the impact of the standard in ensuring that people’s information and communication needs are met.

Accessible Information Specification V.0.7 Draft Page 24 of 36 Scope 8 8.1 Overview of scope The accessible information standard directs and defines a specific, consistent approach to identifying, recording and addressing the information and communication support needs of patients, service users, carers and parents. In implementing the standard, organisations are required to:  Follow a consistent approach to the identification of patients’, service users’, carers’ and parents’ information and communication needs, where they relate to a disability, impairment or sensory loss;  Use a defined and coded set of data items, human readable definitions or categories to record patients’, service users’, carers’ and parents’ information and communication needs, where they relate to a disability, impairment or sensory loss;  Establish ‘flags,’ alerts or other mechanisms to ensure that such needs are highly visible to appropriate staff, prompt proactively for action to be taken and are shared appropriately;  Amend or implement systems – including human processes, auto-generation systems and computer software – such that information and correspondence is sent or provided to patients, service users, carers and parents in a suitable format for them and appropriate communication support is provided to enable individuals to access and use services effectively.

8.2 In scope The scope of the accessible information standard encompasses activities which relate to:  Patients or service users of publicly-funded health or adult social care, or their parents or carers.  Information or communication support needs or requirements which are caused by or related to a disability, impairment or sensory loss.  An individual’s need or requirement for information or correspondence in an alternative (non-standard print) format including print alternatives such as braille, and electronic and audio formats.

 An individual’s need or requirement for communication support.  An individual’s use of communication tools or aids.  An individual’s need or requirement for support from an advocate to support them in communicating effectively.  An individual’s use of alternative or augmentative communication tools or techniques.  The detail or specific type of alternative format or communication support which is needed or required by the patient, service user, carer or parent.

Accessible Information Specification V.0.7 Draft Page 25 of 36  All information provided to individuals with particular information or communication support needs including ‘personal’ or ‘direct’ communication (for example appointment letters or prescriptions) and ‘generic’/ ‘indirect’ communication (for example leaflets or manuals). The standard includes the provision of information in alternative formats and communication support to mental health service users to support their access to and receipt of NHS and adult social care. This would include support needed by individuals to enable them to effectively communicate their needs and preferences. However, communication support which is needed by or provided to a patient or service user as part of an agreed mental health care plan or other mental health pathway of care, is outside of the scope of this standard. Decision-making support under the Mental Capacity Act 2005 is also out of scope (see below). Further clarification in this regard will be included in Implementation Guidance. 8.3 Out of scope 8.3.1 Key aspects determined to be out of the scope of this standard The following aspects, which may be considered relevant to the wider topic area of improving the accessibility of health and social care services, are explicitly out of scope of this standard:  The needs or preferences of staff, employees or contractors of the organisation (except where they are also patients or service users (or the carer or parent of a patient or service user)).

 Recording of demographic data / protected characteristic strand affiliation.  Recording of information or communication requirements for statistical analysis or central reporting.  Expected standards of general health and social care communication / information (i.e. that provided to individuals without additional information or communication support needs).  Individuals’ preferences for being communicated with in a particular way, which do not relate to disability, impairment or sensory loss, and as such would not be considered a ‘need’ or ‘requirement’ (for example a preference for communication via email, but an ability to read and understand a standard print letter).  Expected standards, including the level of accessibility, of health and social care websites.

 Implementation of the Equality Act 2010 more widely, i.e. those sections that do not relate to reasonable adjustments in the provision of information. This exclusion includes other forms of support which may be needed by an individual due to a disability, impairment or sensory loss (for example ramps or accommodation of an assistance dog).  Foreign language needs / provision of information in foreign languages – i.e. people who require information in a non-English language for reasons other than disability.

Accessible Information Specification V.0.7 Draft Page 26 of 36  Matters of consent and capacity, including support for decision-making, which are not related to information or communication support.  Standards for, and design of, signage. 8.3.2 Explanatory note about foreign languages The provision of foreign or non-English language interpretation or translation is out of the scope of this standard. Organisations MAY record details of individuals’ need for foreign language interpretation or translation alongside recording of information and communication support needs in line with the standard, but this is optional. This issue is considered in more detail in the Implementation Guidance.

8.3.3 Explanatory note about health and social care websites The accessibility of health and social care websites is outside of scope of the accessible information standard. However, the standard remains relevant in circumstances where a health or social care professional would usually refer a patient or service user (or their carer or parent) to a website for information. In these instances, it will be the duty of the professional – or their employing organisation – to verify that the website is accessible to the individual and, if it is not, to provide or make the information available in another way. For example, if a GP would usually direct a patient newly-diagnosed with Diabetes to information on the Practice’s website about Diabetes, he or she would need to check with the patient that they are able to use the website for this purpose. If, because the website is inaccessible to them, they are not, the GP will need to provide the information in an alternative format, for example as a paper copy, via email or on audio CD. Information about web accessibility standards is included as part of Implementation Guidance, and will be expanded upon as part of resources to support implementation.

Accessible Information Specification V.0.7 Draft Page 27 of 36 Details of the standard 9 9.1 Recording of data In order to support the requirements in section 5.2, organisations MUST record data about the information and communication needs of patients and service users, and where appropriate their carers and parents, where they relate to or are caused by a disability, impairment or sensory loss. Electronic and paper-based patient or service user record and administration systems MUST record if a patient or service user, or their carer or parent, has an information or communication support need which relates to or is caused by a disability, impairment or sensory loss. In electronic systems which use SNOMED-CT or Read codes, such information MUST be recorded using the coded data items associated with the subsets defined by this standard. In electronic systems which use other coding systems or terminologies, such information MUST be recorded in line with the human readable definitions / categories associated with the data items. Paper-based systems and documentation MUST enable recording of needs in line with the human readable definitions of the data items associated with the subsets defined by the standard. This will require changes to be made to existing electronic and paper-based systems used in health and social care settings. A standard question or questions SHOULD be used to ask all patients or service users (and where appropriate their carers and parents) if they have any such needs. Implementation Guidance includes details of suggested standard questions. Information recorded about patients, service users , carers and parents information and communication support needs MUST be based on information from the individual themselves or, where they lack capacity, on information from their main informal carer.

Where a positive response and record is made, the details of the patient, service user, carer or parent’s information or communication support need(s) MUST be recorded as part of their patient or service user record and in any other documentation / systems as needed to ensure that those needs can be met. Information about a patient or service user’s information or communication support needs (or those of their carer or parent) MUST be recorded as part of an individual’s first or next interaction with the service.

Organisations and professionals using electronic patient or service user record or administration systems MUST record individuals’ needs using the coded data items or human readable definitions / categories associated with the subsets defined by the standard. Details of proposed subsets and their associated data items and definitions are included in the Technical Document, which forms part of the Specification. Terminology subsets for the standard will be available prior to piloting (October 2014) and relevant existing SNOMED-CT and Read Codes will be associated with the standard at this point. Upon approval of the accessible information standard at Full

Accessible Information Specification V.0.7 Draft Page 28 of 36 stage, new SNOMED-CT and Read Codes will be authored as required and released as part of the biannual cycle. Note that:  Selection of any one category – with the exception of ‘no requirement’ (which is not coded) – would result in a ‘Patient information status (finding) (310386007)’ in SNOMED-CT.  The data items will not form a dataset, and the accessible information standard is not proposing the creation of a new dataset or national collection – the data is to be recorded for the purposes of direct patient care.

 Some of the data items associated with the subsets of the standard are mutually incompatible, for example, an individual with a specific information format requirement for braille will not require communication support to lipread. Conversely, some combinations of recorded needs are highly likely to occur, for example, ‘requires information in easy read’ and ‘requires advocate for people with learning disabilities.’ Further advice and worked examples in this regard will be provided as part of Implementation Guidance prior to Full stage to support accuracy of recording, edit checking and quality assurance. The standard provides indicative content for the ‘communication preferences’ and ‘special requirements’ sub-headings of the Clinical Documentation and Generic Record Standards headings specified in the Standards for the Clinical Structure and Content of Patient Records being developed and published in stages by the Academy of Medical Royal Colleges and Health and Social Care Information Centre during 2014. More information is available here: http://www.rcplondon.ac.uk/sites/default/files/standards-for-the-clinical-s tructure-and- content-of-patient-records.pdf 9.2 Meeting of needs 9.2.1 Delivery requirements / response times and procedures Organisations MUST take steps to ensure that communication support and information in alternative formats can be provided promptly and without unreasonable delay.

Organisations MUST establish – and be able to demonstrate – clear processes for the sourcing of information in alternative formats and communication support. However, what is deemed acceptable and indeed reasonable in terms of delivery / response times, requirements and expectations will understandably differ between different care settings and different types of support required. As an indicative guide, for the purposes of meeting the information and communication support needs of patients, service users, carers and parents, health and social care settings may be split into the following three categories:

Accessible Information Specification V.0.7 Draft Page 29 of 36 1. Routine care (including pre-booked appointments (booked 48hours or more in advance) within primary care and community services, elective care within an acute setting, routine social care). 2. Urgent care (including walk-in facilities or same-day appointments). 3. Emergency care (including emergency admission into an acute hospital setting, category A ambulance call, emergency social care admission). For routine care, organisations MUST ensure that individuals are able to access communication support and information in an accessible format without incurring any additional delay in accessing care or treatment (i.e. any need to wait longer than a person without any information or communication support needs). For urgent and emergency care, organisations MUST ensure that individuals are able to access communication support and information in an accessible format as soon as is practically possible following contact being made with the service. The only acceptable exceptions to this rule are in circumstances where:  The availability of relevant communication professionals is known to be extremely limited, especially in some areas, for example deafblind communicators and interpreters, and it is therefore not reasonably possible for the organisation to source such a professional in line with usual service timescales.  The production of required patient / service user information is known to be time- consuming either due to processes followed (for example in the creation of easy read materials) and / or because of the length, complexity or rarity of content. Organisations MUST learn lessons from occasions where individuals’ requirements for alternatively formatted information or communication support are not met, including taking steps to ensure that they are / can be met in the future. Organisations SHOULD make full use of online digital services, especially where individuals with the necessary skills and expertise are scarce and in order to enable prompt access to communication support.

These issues are explored in more detail as part of Implementation Guidance and resources to support implementation. 9.2.2 Quality and governance 9.2.2.1 Overview Information which is translated or transcribed into alternative formats MUST be accurate and of a suitable standard or quality to effectively support the patient, service user, carer or parent with the stated need. Likewise, professionals providing communication support, interpretation and translation MUST be suitably qualified to perform the role effectively, including having the necessary knowledge and skills to handle clinical, sensitive and personal information appropriately. Organisations MUST ensure that British Sign Language

Accessible Information Specification V.0.7 Draft Page 30 of 36 interpreters and deafblind manual interpreters used in health and social care settings have: o appropriate qualifications; o Disclosure and Barring Service (DBS) clearance; o signed up to a relevant professional code of conduct. In a medical setting, British Sign Language (BSL) interpreters used to provide face- to-face or remote interpretation MUST be qualified to Level 6. Quality assurance MUST be undertaken by organisations to ensure that the type of communication support or alternative format provided to patients, service users, carers and parents is effective in meeting those needs. Such assurance MAY be undertaken in partnership with one or more patient / service user groups. Responsibility for such assurance lies with implementing organisations. Where health and social care staff are themselves suitably trained, qualified and registered communication professionals and / or interpreters, they MAY take on the role of providing communication support or interpretation. Further advice with regards to quality and governance is included as part of Implementation Guidance.

9.2.2.2 Note about use of family members It is important to consider patients’ rights to confidentiality and autonomy in the provision of communication support. Professional interpreters, translators and communication support workers are bound by contract to act in accordance with the Data Protection Act (1998) and in line with local information governance policies. There can be no such assurances when family members or friends are used, nor can their ability to translate or support communication in an objective and accurate way be assessed.

All individuals with information or communication support needs MUST have the opportunity to have those needs met by a suitably qualified professional. Use of a family member or friend in place of such a professional should be by exception, and only where the patient has given their explicit consent and preference for this approach. It should be noted that, even where family members are able to support ‘routine’ communication, they may become distressed in an emergency or may be unfamiliar with complex medical terminology, which may undermine their ability to support their friend or relative.

Accessible Information Specification V.0.7 Draft Page 31 of 36 Implementation 10 10.1Concept of operation This standard supports organisations to make ‘reasonable adjustments’ to meet the information and communication needs of disabled patients, service users, carers and parents as outlined in the Equality Act 2010. Information about an individual’s information and communication support needs (and changes to that information) should be recorded and made available – with the individual’s consent where appropriate – to those who have a legitimate relationship with the individual, including named carers and the person themselves. A range of professional groups will need to access the data. The information needs to be available at any time day or night.

Where suitable electronic systems are not in use, implementation of the standard MUST be achieved using paper records and paper-based approaches. 10.2Working practices Implementation of the accessible information standard will result in changes to working practices in some areas and in most organisations. Further detail is provided as part of the Implementation Plan and Implementation Guidance. Engagement activity and testing has revealed that, in order to ensure effective and sensitive identification and recording of individuals’ information and communication support needs, and subsequent meeting of those needs, training may be needed by key staff. The important role played by receptionists, secretaries, practice managers, administrators and other non-clinical staff in this regard has been highlighted. In some instances, implementation of the standard will require training for some or all staff to access, record, update and use data about individuals’ information and communication support needs. However, it is expected that this particular training requirement will, in general, be small. It is important that appropriate and adequate training is provided to ensure that all staff groups are competent to access and input data as required, meeting information governance requirements. Implementation Guidance has been developed and will be expanded upon prior to Full stage, including being informed by formal consultation on the standard. At Full stage, Implementation Guidance will include signposting to online training, advice and guidance as well as good practice examples and sources of further support. These resources will be available from the NHS England website www.england.nhs.uk/accessibleinfo Organisations SHOULD make use of these resources to facilitate effective and efficient implementation of the standard. 10.3Data flows Best practice would recommend that, where local processes and systems permit it, data about an individual’s information or communication support needs should be shared as part of handover documentation and correspondence associated with

Accessible Information Specification V.0.7 Draft Page 32 of 36 referral, transfer or discharge (with due consideration for information governance safeguards and records management protocols). Prior to Full stage, further work will be undertaken to explore the potential and actual impact of the standard on data sharing processes and data flows, including those within social care and health care, and between social care and health care providers. This will include consideration of shared electronic systems and transfer of data between different systems where relevant / appropriate.

Following approval of the standard at Full stage a request will be made for the inclusion of the data items associated with the standard as part of the Inter-Provider Transfer Administrative Minimum Data Set and to include the data items associated with the subsets defined by the standard as core or standard content for Summary Care Records (SCR), and transfer using the NHS Choose and Book / e-Referral Service (ERS). Consideration will also given to the flow of data using the Electronic Prescription Service (EPS) and GP2GP data sharing.

Note that the accessible information standard is not establishing a new dataset or national collection. 10.4Mandatory fields It is mandatory for IT systems to support recording of the data items associated with the subsets defined by the accessible information standard or their human readable definitions / categories. Organisations and systems MUST comply with the accessible information standard in recording individuals’ information and communication support needs, including using defined data items and codes (where relevant terminologies are used in systems).

Recording of this data is REQUIRED, that is, where data is available – i.e. where the individual has a need – the data item or its human readable definition / category MUST be supported and populated. In addition, organisations or localities implementing the accessible information standard MAY decide on any additional content to be included as part of local data collection and recording practice. 10.5Terminology and coding The Information Standards Board has approved the SNOMED CT fundamental standard for use in the NHS. NHS suppliers implementing ISB 1605 Accessible Information MUST refer to ISB 0034. NHS organisations contracting for new patient record and administration systems must specify that suppliers use SNOMED CT for all coded information within systems that are developed, but there may also be a need to support other coding systems where required for interoperability. Current SNOMED CT, Read CTV3 and Read V2 codes relating to the data items associated with the subsets defined by the standard, and those to be authored and released, are provided in the Technical Document. These codes are to be used where the system design requires use of codes for observable entries. It is the

Accessible Information Specification V.0.7 Draft Page 33 of 36 responsibility of the IT systems supplier or lead organisation to ensure that the coding used in patient record and administration systems is current and up-to-date. In electronic systems which do not use SNOMED-CT or Read codes, information MUST be recorded in line with the human readable definitions of the data items (also known as categories), as listed in the Technical Document. 10.6Interface design Safe entry, display and print out of data is essential to prevent harm to people. Consideration should be given to layout and ordering of content items to facilitate completion and support accuracy and understanding. For example, need for support from a communication professional is likely to be of most urgent importance in an emergency situation and should appear first for entry and display. 10.7Clinical safety Overall, it is anticipated that the accessible information standard will have a positive impact on clinical safety as it will facilitate awareness of individuals’ information and communication needs, thus supporting informed consent and effective clinical dialogue.

A Clinical Safety Case has been prepared and organisations implementing the accessible information standard SHOULD be aware of and take steps to address and minimise the three hazards identified, including in line with mitigating actions. Organisations manufacturing, deploying and using new or updated software MUST follow the processes set down in two information standards – ISB 0129 and ISB 0160 – approved for the NHS and social care in 2009. These standards require organisations to determine if the software gives rise to an impact on patient safety, and then mitigate the risk appropriately prior to implementing the software. Risk management MUST then be continued throughout the lifecycle of the system including when it is decommissioned or replaced.

All outputs and processes associated with the standard and all implementation of the standard locally including data management, quality and sharing will (and MUST) follow existing information governance frameworks, including the fundamental standard, ISB 1512 Information Governance Standards Framework. 10.8Information governance All IT systems MUST comply with legal information governance requirements for data security and confidentiality to ensure security and protection of the data when viewed, transferred and stored. Organisations should also refer to, and ensure that they comply with, any and all relevant professional or sector-specific protocols with regards to information governance in implementing this standard. Implementation of the accessible information standard MUST follow existing information governance standards and frameworks including complying with ISB 1512 Information Governance Standards Framework

Accessible Information Specification V.0.7 Draft Page 34 of 36 Guidance around sharing of patients’ data with external organisations for the purposes of translation or communication support and the use of email to communicate with patients will be provided as part of Implementation Guidance. 10.9Clinical and social care governance Clinical governance leads in organisations implementing the standard MUST note the risks identified in the Clinical Safety Case and work with IT and clinical staff to ensure those risks are managed as is required by the NHS IT safety risk management standards (see Section 4.2).

Guidance regarding clinical governance for the accessible information standard is provided as part of the Clinical Safety Case and Implementation Guidance. Those responsible for governance and safe practice within adult social care settings MUST refer to the risks outlined in the Clinical Safety Case and identify and mitigate any additional locally identified risks associated with implementation of the standard such that they are as low as reasonably possible. Issues and concerns related to the implementation of data recording as part of compliance with the accessible information standard or its use should be referred initially to local clinical governance or social care governance leads and if necessary to the standard’s Maintenance Manager (as outlined in the Maintenance Plan). 10.10Implementation timeframe Task Responsible Date Piloting of draft Specification using newly- defined subsets and existing associated data items Developer October - November 2014 Full stage approval by SCCI (anticipated) and issuing of Information Standards Notice SCCI March 2015 Commencement of communications campaign to support implementation Developer April 2015 Publication of resources to support implementation Developer April 2015 onwards Publication of specification and implementation guidance ISAS Early April 2015 Release of new SNOMED-CT and Read codes associated with the subsets defined by the standard HSCIC Early April 2015 New contracts for IT systems and software for patient record and administration systems MUST specify compliance with the standard All organisations 01.04.15 IT systems suppliers and service providers MUST comply with the standard IT system suppliers / health & care organisations 31.03.16

Accessible Information Specification V.0.7 Draft Page 35 of 36 10.11State of readiness A detailed Implementation Plan has been developed and should be read alongside this Specification. This includes the outcome of assessment of the ‘as is’ and ‘to be’ states, and outlines the actions needed to progress from the current position to that of full implementation of the standard. Implementation Guidance has also been developed to support organisations in effectively and efficiently implementing and complying with the standard, and a communications campaign will begin in spring 2015 to raise awareness of the requirements of the standard, once approved.

Accessible Information Specification V.0.7 Draft Page 36 of 36 Maintenance 11 From the date of publication, NHS England and the Health and Social Care Information Centre (HSCIC) will have joint responsibility for the standard. As outlined in the Maintenance Plan, users and stakeholders should direct any feedback about the standard to the Maintenance Manager. Such feedback, and data received as part of monitoring or assessment of compliance, will be impact assessed and prioritised, and where appropriate proposed changes will be taken forward for development, testing and consultation prior to submission to the Standardisation Committee for Care Information (SCCI) for formal approval. The Standard Setting for Accessible Information Advisory Group, established to oversee and input into the development and implementation of the standard, will continue to meet as necessary during 2015 to facilitate consideration of feedback and assessment of impact. The Group will consider any relevant feedback and proposed changes to the standard prior to any testing, development or submission to SCCI.

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