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Work in progress - ratings and comments are still to be finalised

Accessible Information Standard (AIS)

1.1 Stated purpose

The Accessible Information Standard (AIS) aims to make sure that people who have a disability, impairment or sensory loss get appropriate information and communication support from NHS and adult social care services.

1.2 Episodic or relational

2.1 Statutory notification

2.2 Info validated by

Sector

4.1 Personal identifier used

Online portal

Offline alternative

1.3 Data included

Relational

No

Health and social care

NHS number

No

Yes

Full name

NHS number

Communication preferences

Reasonable adjustments

Further info

Source URL

Privacy URL

Recipients

Care provider

NHS - Community Trust

NHS - Acute Trust

NHS - GP

Local Authority (U) - Social Care

Strengths

AIS's requirements are admirably clear and straightforward, and if they were adopted across health ands social care, would be a significant contribution to people's experience.

Weaknesses

AIS is mandatory for "health and care providers", but there is a curious gap in respect of others within the health and care ecosystem, e.g. local authorities when providing information and advice or carrying out an assessment.

Even among providers (e.g. GP practices, hospitals, community NHS trusts, care providers etc) there is startlingly little evidence of the standard being adopted. A recent Healthwatch campaign has highlighted that even where needs are recorded, they are often not flagged, shared or acted on as required by the Standard.

There is no online portal to let someone create an AIS record, again contributing to the lack of awareness and take-up.

The Standard references the SNOMED-CT value set for Reasonable Adjustments Flag, which contains 348 entries (including several duplicates) and is seen as too cumbersome for most people's purposes.

Further information
FIVE STEPS OF AIS IDENTIFY: How does the service assess for disability related information or communication needs? How does the service find out if people have any of these needs? How does the service plan how it will meet those needs? RECORD: How does the service record those identified needs clearly? What systems are in place as part of the assessment and care planning process? FLAG: How does the service highlight or flag people’s information and communication needs in their records? This could be in paper or electronic records. The chosen method must make it possible for all staff to quickly and easily be aware of (and work to meet) those needs. SHARE: Services sometimes need to share details of people’s information and communication needs with other health and social care services. This means that other services can also respond to the person's information and communication needs. How does the service do this (when they have consent to do so)? MEET: How does the service make sure it meets people’s needs? How does the service make sure that people receive information which they can access and understand? How does the service arrange communication support if people need it? (Extract from CQC website: https://www.cqc.org.uk/guidance-providers/meeting-accessible-information-standard)

Overall functional rating

3. Transparency, choice and control

3.1 Transparency

Purpose is transparent, but no privacy notice to confirm this

3.2 Choice and control

Standard says that consent will be sought but nothing explicit on how consent is provided/applied and whether there can be exclusions

4. Functionality

4.2 Structured data

4.3 Free text

There's a value set in SNOMED-CT (see Reasonable Adjustments Flag) for capturing AIS needs. It contains - wait for it - 348 options, of which 202 are for different language interpreters. Not 100% sure how practical this is.

I think there's an alternative and much smaller value set, developed by one of the ASC system suppliers.

4.4 Carer role

Buried in the SNOMED-CT refset are options such as "Requires communication via their carer", which in theory ought to allow a proxy to communicate on the person's behalf.

4.5 Acknowledgement of receipt

No provision made

4.6 Updates

In theory it should be possible to update an AIS record, but the five mandatory steps (ask, record, flag, share, act) don't include a specific provision to check whether the recorded needs are still accurate. Nor is there an online portal to allow someone to update this for themselves.

4.7 Access to records

n/a - other mechanisms exist which may or may not give access to NHS and care data

5. Reach

5.1 Multi-sector acceptance

Applies to health and care providers (though implementation by health and care providers is extremely limited), but not to others in the health and care ecosystem such as local authorities, nor to other services such as social housing.

5.2 Recipients within orgs/services

Standard requires information to be recorded in a structured format and flagged prominently, but no evidence that this is happening.

5.3 Proactive sharing

Data is captured and held within NHS systems, and there's no means for the person to access or share it.

6. Language and user experience

6.1 Language

There's a value set in SNOMED-CT (see Reasonable Adjustments Flag) for capturing AIS needs. It contains - wait for it - 348 options, of which 202 are for different language interpreters. Not 100% sure how practical this is.

I think there's an alternative and much smaller value set, developed by one of the ASC system suppliers.

Words to watch

6.2 Conditions vs actionable support

Standard doesn't ask for diagnoses/conditions, but there's some anecdotal evidence that some NHS staff believe they should only record reasonable adjustment needs which arise from a clinical diagnosis.

6.3 Online UX

No portal

6.4 Offline UX

UX should be reasonable/good providing the professional asking for information goes about it thoughtfully and sensitively. (Hypothetical rating since there's no portal.)

7. Outcomes

7.1 Actionable support needs

Excellent, provided the professional recording it captures the person's ASNs as they express them. There's anecdotal evidence that some health staff may record ASNs based on clinical diagnosis - this is contrary to the Equality Act.

7.2 Trustworthiness

Trustworthy based on design and intent. Possible reservations due to uncertainty over REACH.

Think Local Act Personal: Data for People
Ratings against the 15 Principles

Overall

TLAP 2

TLAP 3

TLAP 4

TLAP 5

TLAP 6

TLAP 7

TLAP 8

TLAP 9

TLAP 10

TLAP 11

TLAP 12

TLAP 14

Money Advice Trust
Ratings against the 10 principles for designing vulnerable consumer data-sharing programmes

Overall

MAT 1

MAT 2

MAT 3

MAT 4

MAT 5

MAT 6

MAT 7

MAT 8

MAT 10-

Conditions/diagnoses identified
Actionable support needs identified
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