Clarifying notes to support interpretation and implementation

Introduction

The following ‘notes’ have been prepared in response to queries about interpretation of aspects of SCCI1605 Accessible Information – referred to as ‘the Accessible Information Standard’ or ‘the Standard’.

These notes of clarification aim to support effective understanding and implementation of the Standard by applicable organisations. However, organisations should continue (and are advised) to refer to the Specification and Implementation Guidance for definitions and specific details about the Standard’s scope and requirements, which the below does not alter or supersede.

With regard to terminology and definitions, readers should consult the Specification for clarity on relevant and particular terms including terms specifically defined by the Standard (especially sections 1 and 7.1). Where the term ‘patients’ is used in this document, it should be taken to mean, “patients or service users with information and / or communication support needs relating to a disability, impairment or sensory loss”.

Clarifying note on recording of data in non-coded systems

This note focuses specifically on matters relating to the recording of patients’ information/communication needs in systems and by organisations which do not use READ v2 or READ CTV3 or SNOMED CT codes or any other recognised, defined terminology. It does not discuss (in any detail) other aspects of the Standard, including the broader subjects of how to identify and record patients’ needs, or issues relating to flagging or sharing of data, on which readers should consult relevant sections of the Specification (especially section 7) and Implementation Guidance (especially sections 7, 8 and 9).

The clear, unambiguous, consistent and objective recording of patients’ information/communication needs is a fundamental aspect of the Accessible Information Standard. The importance of accurate and routine recording of needs cannot be overestimated as, if needs are not properly recorded, they cannot be effectively met. Patients’ needs must be recorded as a matter of course or ‘business as usual’.

Patients’ needs must be recorded in such a way that the data as recorded enables actions to be taken to meet those needs, by any member of staff – including someone who has had no previous contact with the patient.

Note that it is patients’ information/communication needs which must be recorded, and how to meet them, and not the patient’s disability. Organisations may wish to also record details of the patient’s disability, but they are not required to do so as part of the Standard. In considering recording details of a patient’s disability, organisations should be mindful that this information could be classified as sensitive personal data (under the Data Protection Act 1998), and that information should only be recorded where ‘relevant and necessary’.

Where organisations and systems use READ v2, CTV3 or SNOMED CT codes, patients’ information/communication needs must be recorded using the coded data items associated with the subsets defined by the Standard. Such organisations/systems are not the subject of this clarifying note.

Where organisations use systems which do not use READ v2, CTV3 or SNOMED CT codes or any other defined coding system or terminology, including where paper records are used, patients’ needs must be recorded “…in line with the human readable definitions/categories associated with the data items.”

In the interests of consistency and clarity, and to support (current or future) data sharing, integration and / or interoperability, the preference is for organisations to record patients’ needs using the precise ‘Fully Specified Name’ associated with the relevant data item (also called a ‘human readable definition’ or ‘category’) or one of the synonyms listed in the SCCI1605 Accessible Information Terminology document. For example:

  • SNOMED CT | FSN (Fully Specified Name) (also known as ‘human readable definitions’ or ‘categories’) | READV2 | CTV3 |Synonyms
  • 285055002 | Does use hearing aid (finding) | 2DH1 | Xa2yX | Does use hearing aids. Uses hearing aid. Uses hearing aids.

Where it is not possible, or not practical, to use such terms or phrases, organisations must record patients’ needs in line with the requirements of the Standard, Information Governance duties, accepted good record keeping practice, and in such a way that a third party can understand and act to meet them, including as evidenced by their actions. Further explanation about such recording is detailed below.

It is recognised that the differing format and structure of organisational patient record management and administrative systems will affect what constitutes ‘effective’ recording of patients’ needs in different contexts / by different organisations.  In all cases, organisations must ensure that the amount and type of data recorded about patients’ needs, how it is recorded (including words used) and where it is recorded (including in specific documentation, sections or systems) enable (and indeed result in) meeting of the patient’s needs.

Where ‘free text’ boxes or other ‘unstructured’ sections are used to record patients’ needs, organisations must ensure that sufficient detail is recorded to ensure all of the patient’s needs – and how to meet them – are captured. This includes being mindful of the Standard’s inclusion of four different ‘categories’ of needs or adjustments which may be needed: contact method, information format, communication support and communication professional.

When recording patients’ needs, organisations must ensure that such recording is both accurate and that the data as recorded will provide sufficient, and sufficiently clear, direction such that those needs can be met. For example, ‘Mr Smith is deaf’ does not enable appropriate adjustments to be made or arrangements to be put in place so that the service can communicate effectively with Mr Smith.

Whereas, ‘Mr Smith uses a hearing aid and lip reads’ or ‘Mr Smith needs a British Sign Language Interpreter’ or ‘Mr Smith needs information sent in Arial size 16’ would meet the requirements of the Standard and should ensure successful outcomes for Mr Smith.

In recording additional information about patients, organisations should be mindful of their duties under the Data Protection Act 1998, including ensuring that information is ‘relevant’ and ‘not excessive’ (to the purpose of recording it).

Ultimately, the effectiveness of any recording practice will be judged by whether the record leads to the patient’s needs being effectively met on a regular and routine basis.  

Clarifying note on patient records and consent

The note below focuses specifically on matters relating to patient records, patient data and consent. It does not discuss other aspects of the Standard, including other aspects of consent described in Standard documentation, on which readers should consult relevant sections of the Specification (especially sections 5.1, 5.6.1 and 11) and Implementation Guidance (especially sections 7.2, 7.3, 10.2, 11.4.4.2, 11.4.4.3, 12.2 and 12.7).

In line with the Data Protection Act 1998, organisations are reminded that any new collection of information about a patient (such as their communication preferences) requires the patient to be informed about what new information is being collected, why, who (potentially) will access this information and who (potentially) it may be shared with (and the reason for the sharing).

The Accessible Information Standard requires organisations to include (and, if necessary, to add) data about patients’ information/communication support needs into existing patient data management processes and patient records. Where organisations currently share patients’ data with other organisations involved in their care (for example through referrals), then data about patients’ information/communication needs should be included alongside other data. Organisations should continue to follow their existing processes with regards to patient consent for handling of their data (in line with existing legal duties such as the Data Protection Act 1998).

The Standard does not require any wholescale change to processes for patient data management, data sharing or consent – rather, it requires the addition of data about patients’ information/communication needs into existing processes.

For example, if a ‘new patient registration form’ is used, a question should be included (and if necessary added) which asks patients about any information or communication needs. If ‘new patient’ information is taken verbally (for example over the telephone or at a reception desk) then staff should ask a question about information/communication needs, and, where they exist, a question should be included in relevant staff ‘prompts’ or protocols. Patient records (whether electronic or paper-based) and any notes should include details of individuals’ information/communication support needs, recorded clearly and in such a way that they are ‘highly visible’ and prompt for action to be taken so that those needs can be met.

Note that the Standard also requires organisations to review – and if necessary update – data held about patients’ information/communication needs, as part of existing protocols to ensure continued accuracy of records, for example review of patients’ demographic or contact information.

The Standard should not significantly impact upon – or fundamentally alter – existing processes for the obtaining and recording of consent from patients to record, use, hold, store or share their data. Organisations should follow (and be mindful of) their existing legal duties including under the Data Protection Act 1998. Any data obtained/recorded by organisations about patients’ information / communication needs (as part of implementing and following the Standard) should be added/included into existing processes, including being integrated into existing approaches for obtaining/recording consent – whether implicit or explicit. The same principles apply with ‘consent to share’ (where applicable).

Clarifying note on verification of communication professional qualifications

The note below focuses specifically on matters relating to the verification of the qualification of communication professionals. It does not discuss other aspects of the Standard, including the broader issues of when and how professional communication support should be provided, on which readers should consult relevant sections of the Specification (section 7.2) and Implementation Guidance (especially section 11 and 12.3).

The Accessible Information Standard requires organisations to arrange or provide appropriate, professional communication support where it is needed to enable individuals to effectively access / receive health or adult social care, to facilitate effective/accurate dialogue, and to enable participation in decisions about their health, care or treatment.

In the context of the Standard, ‘professional communication support’ includes interpreters and translators – notably British Sign Language Interpreters and Deafblind Manual Interpreters – as well as less well-known communication professionals who support people who are d/Deaf, deafblind or have hearing loss such as speech-to-text-reporters (STTRs), lipspeakers and notetakers. It also includes professional communication support needed by people with a learning disability, such as support from an advocate.

In line with the Standard, organisations must ensure that communication professionals used in health and adult social care settings have: appropriate qualifications (for British Sign Language interpreters this means a BSL level 6 or an honours degree in their second language); Disclosure and Barring Service (DBS) clearance (formally known as a ‘CRB’ or ‘Criminal Records Bureau’ check); and have signed up to a relevant professional code of conduct.

For communication professionals working with d/Deaf and deafblind people (including British Sign Language interpreters), organisations should ensure that they are registered with the National Registers of Communication Professionals working with Deaf and Deafblind People (NRCPD). Registration with the NRCPD confirms that professionals hold suitable qualification(s), are subject to a code of conduct and complaints process, have appropriate insurance, hold an enhanced disclosure from the Disclosure and Barring Service, and engage in continuing professional development.

A professional who is registered with the NRCPD can be found using the ‘find a communication professional’ function on the NRCPD website which enables a search to be completed for all communication professionals of a particular type (for example sign language interpreters) in a particular area or town. The site also allows for registrants to be searched by name, facilitating assurance and verification of individuals’ status. NRCPD registrants can be easily identified ‘in person’ through their identification card, which should be carried at all times – see example below.

Where professional communication support for a d/Deaf or deafblind person is arranged through an agency, organisations should seek confirmation and assurance from the agency (including as part of any contract, service specification or agreement) that only NRCPD registrants will be provided.

Similarly, where communication support – most usually British Sign Language interpretation – is provided ‘remotely’ or ‘virtually’ over the internet, organisations should ensure that communication professionals providing such services also meet the requirements as summarised above.

Where organisations are unable to identify an NRCPD registered Deafblind Manual Interpreter (specifically), they should consult section 12.3 of the Implementation Guidance for additional advice in this regard.

Clarifying note on sourcing and stocking information in alternative formats

This note focuses specifically on matters relating to the sourcing and stocking of information in alternative formats. It does not discuss (in any detail) other aspects of the Standard, including the broader subject of alternative format definition, types and provision, on which readers should consult relevant sections of the Specification (especially sections 5.4 and 7.2) and Implementation Guidance (especially sections 6.4, 11.4.3 and appendix d).

The Accessible Information Standard requires organisations to provide relevant information to patients in an accessible format, that is, a format which they can read (or otherwise access) and understand. The ‘judgement’ or ‘assessment’ about whether this requirement has been fulfilled lies with the individual patient themselves, i.e. can they read, access and understand the information? Can they ‘use’ the information as it was intended? If they can, then the organisation has met this aspect of its obligations under the Standard.

Relevant information includes ‘patient information leaflets’ about  treatments, procedures and conditions, and information (including advice sheets and booklets) which relate to self-care, consent to treatment, choice of treatment or provider and other matters with a direct relevance to the patient, their health/wellbeing and receipt of treatment, care or services. Relevant information does not include ‘corporate’ information, for example annual reports or accounts.

Accessible formats may include (but are not limited to):

  • Printed information in a larger font size – varying from point 14 to point 28 depending on individual need;
  • Information produced in an ‘easy read’ format (simpler language with understanding supported by images or pictures);
  • Information sent or available electronically via a website, email or text message (as alternatives to printed or handwritten information);
  • More ‘specialised’ formats such as audio, braille and British Sign Language video.

The Standard requires that patients receive information which they can read (or otherwise access) and understand. It does not stipulate that all organisations must offer every type of alternative or accessible format, rather that organisations must provide information in a format which is accessible to the patient as an individual. It is likely that different organisations will provide information to the same individual in different formats, depending on the patient’s needs, the nature of their service and their facilities. For example, accessible information for a person who is blind may include that sent via email or text message, as well as that produced in braille or audio format.

The Standard does not require organisations to have ‘stocks’ of information in various alternative formats in anticipation of requests. However, organisations should have an identified process for obtaining information in alternative formats (including those which are not able to be produced in-house) if needed by a patients. Such processes should ensure minimum delay in receipt of accessible information by the patient. Good practice would be for organisations to have a limited number of the most commonly used patient-facing documents / information readily available (i.e. ‘in stock’) in the most commonly required alternative formats (as determined locally / from the organisation’s receipt of requests), but this is not a requirement.

In order to minimise (although never remove) the need for information to be produced in alternative formats, organisations should consider improving the accessibility of their ‘general’ information and documents, including templates, so that they are accessible to as many people as possible. ‘Top tips’ in this regard are included the Implementation Guidance (section 6.4).

It is thought that most providers will be able to provide information in larger print ‘in-house’, and many will also be able to communicate with patients via email or text message. All providers should also be able to make use of patients’ own devices which can support communication – for example dictating information into a smartphone.

With regards to the most commonly needed externally-produced alternative formats, including audio (electronic audio files and CDs), braille, ‘easy read’ and British Sign Language (video file/DVD), organisations should consider both value for money and ‘added value’. For example, many local charities – and local branches of national charities – who work with people with particular disabilities and sensory loss are able to produce information in alternative formats (for a fee) and, having established a relationship, may also be able to offer wider support to your organisation in how to improve accessibility for their client group (and therefore encourage them to use your services).

Consideration should also be given to understanding the alternative format production and procurement arrangements which other local NHS and adult social care providers and commissioners have in place, as they may have a framework arrangement, be able to recommend a trusted supplier and / or have other advice. Organisations may also wish to explore a collaborative approach to the production of information in alternative formats, including considering local sharing of alternative formats of documents which are most commonly used by multiple providers.

The UK Association for Accessible Formats (UKAAF), an industry association aiming to improve quality and practice in accessible format provision, also offers a list of services provided by their members.

Organisations are reminded that, for many patients, email is a highly effective, quick and economical communication format. A specific advice sheet covering the use of email and text message to communicate with patients will be published separately by NHS England.

References