Review of disability data harmonised standards

Policy details

The Government Statistical Service (GSS) Harmonisation team are based in the Office for National Statistics (ONS). The team supports harmonisation of data across the UK. This involves providing bespoke advice and harmonised standards and guidance about how data on a range of different topic areas are collected and presented. The standards and guidance are designed to improve the consistency, coherence and comparability of statistics.

Producers of statistics use these harmonised standards as a starting point in their data collection process. By using harmonised standards, they can:

• align with other producers of statistics
• increase the usefulness of their statistics
• meet the Code of Practice for Statistics’ cross cutting theme of coherence

Harmonised standards also allow people to effectively and accurately compare data that has been collected across different datasets. This means we can more easily understand what that data does, and does not, tell us. This ensures that statistics are used to their full effect for the public good.

Introduction

Measuring disability can be particularly difficult. Many conditions change over time and some people have more than one condition at the same time. There are also different ways to consider disability. For example, we could consider disability according to legal definitions, medical conditions, or societal barriers. Furthermore, health is a devolved issue and different administrations take different approaches to disability.

This review of the disability harmonised standard fulfils a commitment published in our February 2022 GSS Harmonisation Team Workplan. We pledged to review and research the topic area with the aim to ensure that disability standards meet user needs, and to explore any potential improvements.

As part of this review we:

• worked with a variety of stakeholders, including respondents, interviewers, data processors and data users to establish individual needs and gather feedback on whether the current disability standards could be improved
• did a survey with data collectors and processors to determine technical capabilities
• reviewed several international approaches for measuring disability
• did an unmoderated card sort to investigate potential impairment groupings

Our findings will be used to inform our research and to update our questions accordingly. Until our updated standards are published, we encourage users to continue to use the current harmonised standards.

The current harmonised standard

One of the most common data needs is to define disability according to its legal definition. There are two relevant harmonised standards that need to be used together to collect data on disability in line with the Equality Act (2010) for Great Britain, or the Disability Discrimination Act (1995) for Northern Ireland:

• the long lasting health conditions and illness harmonised standard
• the activity restriction harmonised standard

These standards have been designed specifically to capture the core disabled population according to UK legislation. Users can also collect data using the impairment harmonised standard to understand the activities that a person can and cannot do because of a health condition. There is also harmonisation guidance for mental health data, which explains the context of statistics without providing a preferred standard. We have published a review of the mental health standard alongside this review.

Reasons for this review

The current disability standards were published in 2011 and the question design dates back to 2008, as mentioned in Health Statistics Quarterly. A review of the current standards is now needed, and it was recently recommended by the Inclusive Data Taskforce (IDTF) that standards should be reviewed every five years. We also needed to review the disability standards in relation to the mode of collection and data requirements.

Mode of data collection

Question design began in 2008 with a group of topic experts who created the questions before they underwent cognitive testing, during which they explored whether the questions were performing as expected. The wording and format of the questions were based on a delivery mode in which the questions were asked by a survey interviewer, rather than being completed directly by respondents. Since then, the mode of data collection has changed to include and encourage the use of online self-completion. Since 2008 there has also been more interest in administrative, or “admin”, data-based statistics. Admin data often uses self-completion or proxy completion, and the disability standards were not designed for these modes of collection. Admin data sources are a useful resource to complement survey research. They are inexpensive, sustainable, and timely. But admin data sources are designed for operational purposes and not for research. This means they are unlikely to meet the harmonised standards of consistency, comparability, and coherence. For example, some data sets focus solely on the legal definition of disability, others consider disability from a purely medical point of view and others reduce disability to a single self-reported tick box. The Harmonisation team is dedicated to proactively working with and consulting stakeholders on the advantages of using harmonised standards, such as our ongoing work with NHS England. We are seeking to harmonise admin data from design through to data coding, formatting, and presentation.

As the mode of data collection is changing, there is a need to review how we optimise the standard for the mode and update it as needed. As set out in our upcoming plans, we intend to research and update our standards, firstly considering an online mode. In the long-term, we will then review our questions and optimise them according to telephone and face-to-face modes. We also plan to work closely with data collectors and processors to develop an offering for harmonised admin data.

Data Requirements

Data requirements for disability standards have changed in three major ways over the last 10 years.

Firstly, there is an increasing argument for viewing disability in line with the social model of disability, rather than viewing it according to legislation. Both the Scottish Government and Welsh Government have signed-up to the social model of disability. Existing standards were designed to align with the Equality Act (2010) and Disability Discrimination Act (1995). The Inclusive Data Taskforce (IDTF) put out recommendations in 2021 which included the need to revise measures of disability to make them closer to the International Classification of Functioning, Disability and Health (ICF) biopsychosocial model. The social model stands in opposition to the medical model and places the disablement process on societal barriers rather than in the individual. The biopsychosocial model considers environmental factors but also includes the role of health conditions such as diseases, disorders, and injuries. Questions relevant to these models focus on activity limitations and participation restrictions regardless of medical diagnosis. It is important to review and understand whether we should prioritise aligning our disability standards with legislation or whether this is now an outdated approach.

Secondly, now that the UK has left the EU we need to review whether standards should remain compliant with the European Union Statistics on Income and Living Conditions (EU-SILC) needs. The main difference is that EU data includes health conditions lasting for at least six months, whereas UK legislation includes health conditions lasting at least 12 months.

Finally, there are data gaps where complementary surveys that captured additional progressive health conditions and other non-core elements of the disability standard have either:

• stopped running – for example, the Life Opportunities Survey
• changed over time – for example, the Family Resources Survey

Strengths and weaknesses of the current standard

We have identified areas where the existing disability standards may not fully meet needs. But we have also found aspects of the current standards that are performing well. In some instances, the same aspect of the standards was seen as both an issue and a strength depending on the users’ point of view.

Known weaknesses of the current standard

Defining “a little” and “a lot”

Our research showed that respondents do not consistently interpret the difference between the two response options “a little” and “a lot”. In the activity restriction harmonised standard, respondents are asked “do any of your conditions or illnesses reduce your ability to carry out day-to-day activities?”. They can answer this question with one of the following response options:

• “yes, a lot”
• “yes, a little”
• “not at all”

Cognitive interviews showed some respondents felt that the difference between “a little” and “a lot” was subjective. They said this affected their confidence in their answer. One respondent said, “I don’t really understand the difference between a lot and a little”, which demonstrates the point. This finding was supported by Census 2021 for England and Wales question testing, where some respondents wanted an explanation about what counted as “a little” and what would be “a lot”.

This finding was also supported in our 2022 survey of Office for National Statistics interviewers. Some interviewers expressed that the response options are too subjective. One interviewer said, “one person’s day to day activities may be very different to another’s, and therefore the reduction in ability to carry out may be very different”. Interviewers also shared that respondents often asked for clarification on the difference between “a little” and “a lot”.

This issue does not affect a binary disabled or not disabled distinction because the “a little” and “a lot” options are aggregated in line with the legal definition to demonstrate a restriction to daily activities. But there is a user need for information about how severe a person’s condition may be. For example, our stakeholders have reported the need to disaggregate by severity and impairment type to understand how contexts impact disabilities differently. Producers of statistics should include a warning alongside this data to advise users that it is based on a subjective assessment. We will address this in the short-term by publishing a warning alongside the harmonised disability standard. In the long-term we plan to explore the possibility of providing appropriate guidance for defining “a little” and “a lot”. For example, Canada defines a “marked restriction” according to the time it takes a person to complete a task and how often the restriction is present.

Impairments and their relationship with medical conditions

The harmonised standard for impairments presents 10 categories of impairment type and asks users to report whether they are affected by any of the listed impairments. The question does not capture medical conditions and we do not believe respondents or data users fully understand this. The impairment standard is designed to look at the activities a person cannot do, or the activities they have difficulty doing because of their health condition. It does not aim to capture a medical condition. For example, glaucoma is a medical condition, but being unable to see or being partially sighted is an impairment. The relationships between impairments and medical conditions are not straightforward, and often involve highly complex interactions.

Qualitative research has shown that each impairment can relate to multiple health conditions and that each primary impairment can lead to impairments in many other areas. For example, a person who experiences a condition which impairs vision may report other impairments caused by vision loss. One respondent said, “with my vision it causes a lot of distress sometimes and fatigue… if someone is looking to me and talking to me I don’t know if they are looking at me or not. And in that case, there are things that are kind of socially different”. In this specific situation, the respondent expressed feeling unsure about whether they had answered the question correctly, or if they should only have selected the primary impairment rather than all ways they are affected. They said, “I got a bit confused because you kind of have secondary elements to a condition”.

This highlights two issues. Firstly, we cannot be sure whether respondents are consistently answering the impairment question by giving information about both the primary impairment and any secondary impairments, as the question was intended. For example, if a respondent has a primary impairment that affects their vision but also has impairments involving their “mental health”, or “stamina or breathing or fatigue”, these should all be included in their answer.

Secondly, we cannot be sure whether data users are correctly interpreting this data. For example, social or behavioural impairments can be reported for a variety of reasons. But data users have used this response option to indicate autism spectrum disorder. This is an issue which is likely made worse by the response option guidance which states “for example associated with autism spectrum disorder (ASD) which includes Asperger’s, or attention deficit hyperactivity disorder (ADHD)”. Our research participants with academic knowledge of neurodiversity expressed that this guidance implied a diagnosis of ADHD and ASD. They also stated that this meant “their behaviour is going to be poor” and said “you’re inferring that ADHD is linked to behavioural issues and I don’t think that is true”. In the medium-term we will address this finding by amending and testing the guidance for the impairment question and we will specifically address the response option for “socially or behaviourally”.

Incomplete impairment response options

A second issue with the impairment standard response options is the incomplete list of impairment types. The list of impairments included in the harmonised standard was created to “reflect those impairments deemed most useful and relevant for categorisation to aid policy development, policy monitoring and service needs assessment” as described in Health Statistics Quarterly. It was not intended to be a comprehensive list of impairments.

Although the list of impairments was not intended to be comprehensive, recent cognitive testing found the response options largely covered what participants expected. One research participant suggested that we should add a response option for incontinence because this can be a barrier to participating in society. The Health Statistics Quarterly articles note that this was originally considered as a response option because it is included in the list of capacities in the Disability Discrimination Act (1995). But the response option was no longer included by the time the standard reached the cognitive testing phase of development. We may hypothesise that this decision was made because it was not well received, by either respondents or survey interviewers, or because the response option would not have helped with developing policy. We would need to research the decision more thoroughly to understand the reasons why the response option was removed.

We were also asked why “communication” was not included. This response option was also considered when the question was developed. Notes from the original cognitive testing in 2009 reported “when [the respondent] was asked if there were any areas of life, not listed, where he would say he did have difficulty. He said “communication” was such an area”. This shows we may need to do some research to better understand why “communication” was removed as a response option.

We plan to investigate and understand whether “continence” and “communication” should be included as response options in the impairment standard as part of our work in the short-term.

Confusing and incomplete guidance for impairment response options

Another issue with the impairment response options is the incomplete or confusing guidance that is offered. When participants were asked to give ideas about where the standard could be improved, they spoke about the guidance in the response options.

Respondents said they found the guidance confusing. For example, the guidance for “dexterity” gives the examples of “lifting and carrying objects [and] using a keyboard”. A participant who selected this response option said that the guidance did not match their own definition of dexterity. The participant said, “I wouldn’t necessarily think of the term dexterity with lifting and carrying objects… I can lift things, but when it comes to typing I can’t because the skills are different”. Other respondents who did not select this response option said similar things. One respondent said, “lifting and carrying objects is not something I would personally have thought would come under this classification”.

Some response options do not offer any guidance, for example, the “mental health” response option. Participants commented on the uneven use of examples, and they expressed interest in the idea of providing examples for all response options. One respondent said, “I appreciated the little explanations here, maybe with mental health there could have been some clarification there”. Some data users also noted that “mental health” was a broad category and that the lack of guidance made them unsure about the information that was or was not being captured.

Our discussions with stakeholders have also identified a potential need to change the response option of “mental health”. Data users said they would like more detail about mental health because of the amount of response options for physical impairments and lack of comparable detail for mental impairments. But data collectors and data users were also aware that adding more response options may make each category too small to analyse.

We aim to address these issues in the medium-term. We will design and test guidance examples for all response options that do not currently have any guidance attached to them. We will also research improvements in the examples that respondents found confusing.

Impairment option sample sizes

The impairment response options were selected based on how useful and relevant they were in helping to develop policy. Although it is not a comprehensive list of impairments, the number of options still means that sample sizes are often too small for analysis. The Office for Statistics Regulation (OSR) noted in their Review of Transport Accessibility Statistics that “where impairment specific data are collected, they are often not published because sample sizes are too small to provide breakdowns for each of the 10 impairments included in the harmonised standard”. This led to their recommendation that “the GSS Harmonisation Team should develop high level grouping to enable publication of data that represent different experiences – for example high level barrier groupings, and/or high-level impairment groupings”. While we have been working with data users and data processors, we have found the issue of small samples and inability to provide breakdowns is wider than just transport statistics. The same problem exists across both the public and private sectors.

To remedy this, OSR proposed two potential groupings to solve this problem:

• “visible/invisible impairment”
• “mobility/cognitive/sensory”

To understand whether these are the most appropriate groupings we conducted a card sorting exercise with over 1000 members of the public. We wanted to see how they would group the existing response options under the impairment question. We chose to do this research because the UK Statistics Authority Strategy emphasises the importance of being inclusive, so we wanted to ensure the groupings were made based on the views of the public. Findings from the card sort demonstrated a high level of agreement for either 3 high-level groupings or 2 high-level groupings. The 3 groups are as follows:

• physical impairments — which includes “dexterity”, “mobility”, and “stamina”
• sensory impairments — which includes “hearing” and “vision”
• mental or cognitive impairments – which includes “memory, “mental health”, “learning or understanding or concentrating”, and “socially or behaviourally”

To create 2 high-level groups the physical and sensory impairments can be combined.

In our short-term next steps, we will publish a harmonised approach for grouping these impairments and will monitor their statistical performance with the help of our users.

Interviewer discomfort

We surveyed Office for National Statistics (ONS) interviewers in 2022 and discovered that questions on the topic of impairments can make interviewers feel uncomfortable. Interviewers found the following aspects of these survey questions challenging:

• feeling like they are being intrusive by asking about mental health
• listening to respondents talking in-depth about their experience and having to reduce their answer to a tick box
• worrying that the sequence of questions will make the respondent think they have not been listening – especially where respondents have already expressed, they are disabled, and later questions cover the same subject
• listening to the answers when respondents have “chronic or life limiting” conditions or illnesses

None of these factors are specific to the harmonised standards, but it is important to be aware of this interviewer feedback. It reminds us that these survey questions ask about very personal and sometimes painful experiences, and that we should consider the wellbeing of everyone involved in collecting and giving this data.

We will continue to work with interviewers in the long-term, and especially regarding how comfortable they feel asking any newly proposed harmonised disability questions.

Known strengths of the current standard

Easy to complete the questions

Most respondents said they found it easy to complete the long-lasting illnesses and activity restriction questions. Participants in our cognitive testing in 2022 described the questions as “nice and clear”, and “easy, it’s quite straightforward”. We have more evidence that the questions are easy to complete from Office for National Statistics interviewers. In 2022 we surveyed these interviewers about the long-lasting health conditions and illness harmonised standard, and both questions in the activity restriction harmonised standard. Interviewers tended to say that they felt respondents found the questions easy to complete (60% to 74% believed respondents found the questions “very easy” or “easy”), that they were confident in their answer (70% to 79% believed respondents were ‘very confident’ or ‘confident’ in answering the question) and that the question worked well (62% to 71% believed the question worked “very well” or “quite well”). These results suggest that the questions perform well and are easy to complete for most respondents. We hypothesise that this is the case for people who are familiar with the questions and are in the “core” disabled group. The questions may be more difficult for those in the “non-core” group, which includes people who:

• receive medication or treatment
• are neurodiverse
• have fluctuating conditions
• have progressive conditions

We expect that reported ease and confidence can be further improved by clarifying the difference between “a little” and “a lot” response options in the activity restriction question.

Widespread use of questions

The questions from the harmonised standards have been used in many surveys. This has made them familiar to respondents and has led to good harmonisation of data on this topic. Many respondents expressed familiarity with the questions in our cognitive testing. One respondent said, “I feel like I get asked this a lot by now, and I am quite familiar with it, so that makes it easier to answer”.

The widespread use of the questions also brings the benefit of harmonised data which makes it easier to compare information across datasets. Our team reviewed the use of the long-lasting health condition and illness and activity restriction harmonised standards in 2020 and found 14 surveys (across England, Wales, Scotland and Northern Ireland; not including the 2021 Census for England and Wales) used both the long-lasting health condition and illness question and the first activity restriction question. The team found a further 7 surveys which used elements of the standards. The comparability this provides is important to our users. This has been made clear by the number of data users who have asked for data that is both longitudinally and cross-sectionally comparable.

Two-stage process

The two disability questions adequately capture the disabled population and work well for respondents. Although there are technically four questions in the three disability harmonised standards, many users view the core questions as:

• the question from the long lasting health conditions and illness harmonised standard
• the first question in the activity restriction harmonised standard

When these two questions are asked together, they form the best way of capturing information about the core disabled population in line with UK legislation. Our research has identified two main benefits of this two-stage process.

Keeping the process short

A two-stage process is short, which means it is more likely to be used than longer question blocks. Data collectors said that two questions are manageable to add to a survey to capture disability. Longer question blocks would cost more to add, which makes them less desirable.

This also aligns with our findings from our research to understand the potential uptake of new harmonised standards, where we found data collectors were reluctant to add more questions to a survey.

Reducing the burden on respondents

Cognitive testing for Census 2021 for England and Wales found that “overall, participants preferred the two-stage questions to the one-stage question… as this reduced respondent burden and allowed for a more accurate response”. The report also notes “[P]articipants felt that the one-stage question was asking two questions instead of one and that it could not distinguish between those with no health conditions and those with a long-term condition that did not impact on day-to-day activities”.

Allows expression of multiple impairments, conditions or illnesses

The impairment question is “multi-select”, which means respondents can choose as many or as few response options as they see fit. They are not forced to choose a single area of impairment. This is a strength of the current question. As a 2022 ONS publication stated “although 3,573 of identified respondents report only singular impairment types, most individuals report interactions of two or more impairment types”. There is also qualitative data supporting this strength. Recent cognitive testing found respondents who had more than one impairment said it was helpful they could select more than one impairment.

We discovered something similar with the long-lasting health conditions and illness question. Respondents expressed positivity towards the wording of the question and how it was helpful for people who did not have a single condition or illness that is easy to classify. This included respondents who had multiple health conditions and illnesses, as the question does not assume that each person has only one condition or illness. One respondent said, “it’s good that there is a plural there because it is multiple conditions”.

Many respondents also spoke about how physical and mental often overlap. One respondent said “[P]hysical disabilities, I do have some which impact my mental health as well”. Respondents also said that a benefit of the question was that people did not have to decide whether their condition or illness was mental or physical. One respondent said “I am aware that quite often it then asks me to specify by picking one but that’s complicated”.

Areas with conflicting views

Alignment to legislation and capturing all legally disabled groups

The standards do not align with legislation exactly. The standards allow data collectors to gather information about the “core disabled population” but they do not capture everyone who is legally disabled under the Equality Act (2010). For example, it is unclear whether the standards capture information about people with progressive conditions that may or may not affect their day-to-day activities.

The Equality Act (2010) states that “certain medical conditions” are always included as a disability. These include “cancer, HIV infection and multiple sclerosis”. The Disability Discrimination Act (1995) also refers to “progressive conditions” more generally and includes specific provision for muscular dystrophy. Data on groups outside of the core disabled population was being captured elsewhere in 2008, which means the original design did not intend for these people to be counted by the disability questions. You can find out more about this in the Health Statistics Quarterly article called “Update on the harmonisation of disability data collection in UK surveys”.

Groups outside the core disabled population will only be included by these standards if they answer the questions in a certain way. We are investigating a potential solution for this issue with the Office for National Statistics social survey research and design team. The team are developing a question that will capture specific health conditions. This could be used with existing harmonised standards to create data that better aligns to legislation.

Similarly, harmonised standards may also fail to capture neurodiverse people. Neurodivergence is covered by legislation if it has “a substantial adverse effect on the ability of the person concerned to carry out normal day-to-day activities”. However, cognitive interviews suggest that neurodiverse people do not consistently identify as having a long-lasting health condition or illness. One respondent demonstrated this point by saying “I don’t see autism being in this question because it’s a neurodiversity not a mental health condition”. This means the disability questions should not be used to count the neurodiverse population. We will address this in the long-term by designing a question that will gather information about the neurodiverse population and allow data users to separate the data to study specific groups.

Some people also thought sensory impairments should not be categorised as a physical or mental health condition or illness. But our research found that people who expressed this view still knew to record themselves as the question intended. One respondent said, “blindness is not necessarily a physical or mental health condition or illness, but I knew what it was asking, it tends to be sensory, a sensory impairment”.

The harmonised standards may include groups who do not fall under the legal disability definition. Both Section 6 of the Equality Act (2010) and Section 1 of the Disability Discrimination Act (1995) refer to presence of condition or illness and how long there has been an effect on daily life. But the harmonised standards capture data on how long a person has had a condition or illness and the presence of an effect on daily life. This means that, unlike the Equality Act (2010) definition, the harmonised standards would capture information about a person with a long-term condition that only affected them for a short period. We will update our guidance in the short-term to clarify how the harmonised standards do not align to legislation.

Alignment to legislation and the effect of treatment or medication

There is also a misalignment between harmonised standards and legislation when considering the effects of treatment or medication on activity restriction. The Equality Act (2010) states “an impairment is to be treated as having a substantial adverse effect on the ability of the person concerned to carry out normal day-to-day activities if measures are being taken to treat or correct it, and but for that, it would be likely to have that effect”. The Act aims to include people who have a condition regardless of whether they are receiving “any treatment or medication”. By contrast, the harmonised standard emphasises current activity restriction and is designed to exclude cases where medication or treatment means that day-to-day activities are not affected.

The harmonised standard asks respondents whether their condition or illness “currently” affects their day-to-day activities. The guidance states “you should consider whether you are affected while receiving any treatment or medication”. A 2008 workshop showed that questions in line with legislation were confusing for respondents. It found that respondents did not like being asked to “hypothesise or speculate about their likely restriction if medication was withdrawn”. The workshop notes state that this “added unnecessary complexity and would introduce a high level of subjectivity between respondent perceptions, potentially leading to spurious results”. You can find out more about the results of the 2008 workshops in the Health Statistics Quarterly article called “Update on the harmonisation of disability data collection in UK surveys”.

Our 2022 survey of Office for National Statistics interviewers also suggests that the current guidance is not as good as it could be. We found that some interviewers were including people even when their medication meant their activity was not restricted. One interviewer said “sometimes respondents get confused and say they used to have a health problem but now they take medication so no longer have a health problem, for example blood pressure. When of course they do still have a health problem, but it is masked by the medication”. It is possible we could solve this issue by providing clearer guidance. The current guidance just says that respondents should “consider” their medication. We could take a more direct approach by reminding respondents that the question is asking about current activity restrictions regardless of whether they are receiving treatment. We aim to explore this possibility in the long-term.

Aligning with other models of disability

The three most applied models of disability are the:

• medical model
• social model
• biopsychosocial model

The medical model concentrates on symptoms, conditions, or illnesses. The model has been criticised for attributing the disability to the health condition or illness that a person has.

The social model states that people with impairments are not disabled by the impairment itself, but rather by societal barriers. The social model concentrates on what a person needs to overcome these barriers, not how to fix the impairment. Scottish Government and Welsh Government have both named the social model as their preferred approach. Many disabled people have also expressed their preference for the social model.

The biopsychosocial model views disability as the result of health, personal and environmental factors. It is the model supported by the World Health Organisation and recommended by the Inclusive Data Taskforce (IDTF).

We need to consider how well the harmonised standards align to these models based on stakeholder feedback and the recent IDTF recommendations. While some aspects of the standards fit well with the social model, others do not.

Historically, the long-lasting health conditions and illness harmonised standard asked if people “have” a disability. This suggests a person’s condition is what makes them disabled, rather than the societal barriers which can prevent access to certain things. The language has been updated to ask whether people “have any physical or mental health conditions or illnesses”. But these terms are criticised as being too medical, compared to the preferred term “impairment”.

The activity restriction harmonised standard cannot be reconciled with the social model of disability. This is because the question refers to disability as a result of a health condition or illness a person may have, rather than as a result of societal barriers.

The impairment harmonised standard aligns with the social model of disability to some degree. The question concentrates on impairments rather than health conditions. But the guidance for the “socially or behaviourally” response option does mention specific medical diagnoses. Some users have expressed interest in data on the societal adjustments needed, rather than what domains of a person’s life are affected by their impairment, or impairments.

The current harmonised standards have been designed to align to UK legislation. This means they do not fully account for the social or biopsychosocial models of disability. We would need to add many additional questions to capture the biopsychosocial model in its entirety, and our research has shown that stakeholders are not keen to add more questions. When we asked stakeholders about the need to align to the biopsychosocial model, they often said they preferred the social or medical models. They did not think it would be possible to incorporate all the different elements of the biopsychosocial model into a single standard.

It is also important to note that UK legislation and the social model of disability are incompatible in some ways. For example, the Equality Act (2010) considers certain people, such as people with progressive conditions or receiving treatment, to be disabled regardless of whether they encounter barriers. The harmonised standards will continue to align to legislation, but we will also try to incorporate elements of these models wherever possible. In the long-term we will consider an additional question that is aligned more closely to the social model of disability. This work will depend on the findings from ongoing research by the Welsh Government’s Disability Disparity Evidence Unit who are currently assessing the feasibility of capturing data according to the social model.

The term “disabled”

The term “disabled” is contentious. People who endorse the social model are pleased that we have stopped using the term “disability” in favour of “long-lasting health conditions and illnesses” and consider this as progress. Users have expressed a need to avoid combining the concept of having an impairment with being disabled. Not everyone who is covered by the Equality Act (2010) definition of disability identifies with the term “disability”. Testing during development found that the term “disability” was viewed as “a technical or official label linked to benefits such as Disability Living Allowance and the “Blue Badge”, with some respondents uncertain about applying it to themselves in the absence of benefits of some kind”. Data users representing community groups expressed a similar point of view during recent research for Census 2021 England and Wales. The research found “some considered that the “disability” term might be less inclusive to those with milder long-term health conditions and illnesses. “Disability” was also considered to be more linked to physical than mental health conditions”.

There are user groups who prefer the terms “disabled” or “disability”. Third sector groups, including Disabled People’s Organisations, expressed their preference for these terms in the research. They said that these terms are important because of those who self-identify as disabled. Some research participants expressed a concern that people who are considered disabled under the Equality Act (2010) may not identify as having long lasting health conditions and illnesses. We will continue to explore the term “disabled” and its implications that as part of our work in the medium-term.

Continued use of the current standard

We would encourage users to continue to use this standard while we work on it, despite the current limitations. This is because it was developed using research and testing that was conducted for Census 2021 in England and Wales. This research and testing process was thorough, which means it is likely this question will still outperform others that did not undergo such a development process.

Conclusion

Our initial research and engagement summarised in this review found that the current harmonised standards relating to disability have many strengths but also a range of weaknesses. We have worked with a wide range of users across the private, public and third sector as well as using existing evidence and undertaking our own research. We have identified a broad range of needs, but many of them are contradictory. This means they cannot all be met by a single harmonised standard.

What happens next

We have reviewed our research and engagement work to create plans for the short, medium, and longer-term.

In the short term (Spring 2023), we will:

• publish a warning with the activity restriction standard explaining the potential issues with disaggregating “a little” from “a lot”
• research further into whether “continence” and “communication” should be included in the impairments questions
• publish a harmonised approach to grouping impairments and monitor the use and performance of these new high-level categories in the long-term
• clarify our published guidance on measuring disability for the Equality Act (2010) — we aim to make it clear to users in what ways the standards do not align to legislation, please note that some of this is already on the webpage and also applies to the Disability Discrimination Act (1995) for Northern Ireland
• clarify how the harmonised standards align to the medical and social models of disability on our webpages

In the medium term (2023), we will:

• change and test the guidance on the impairment response option for “socially or behaviourally”
• design and test guidance for the impairment response options that do not have guidance already
• design and test improvements for the impairment examples that have been highlighted as confusing
• explore the use of the term “disabled” and the implications it may have
• work with disabled people to better understand their experience, and work with people who are not disabled to better understand how they answer existing questions
• publish updated questions for online self-completion

In the longer term (2024), we will:

• review and optimise our questions according to delivery mode, concentrating on telephone and face-to-face mode questions
• research the possibility of designing guidance to define and separate the activity restriction options “a little” and “a lot”
• continue to work with survey interviewers and ask for their feedback specifically on how comfortable or uncomfortable they would feel asking any new questions
• design new questions to meet identified gaps, such as a question to capture information about the neurodiverse population and separate the data to enable users to study specific aspects of neurodivergence
• explore how we can work with the Office for National Statistics Social Survey Transformation division to learn from their research on capturing specific health conditions. This could be used to inform how we capture the non-core disabled population in line with UK legislation
• design and test improvements to the guidance for the activity restriction question to make it clear activity restriction should be considered regardless of current treatment or medication
• consider the creation of a new question aligned to the social model – this will depend on ongoing work from the Welsh Government’s Disability Disparity Evidence Unit
• work with stakeholders to develop harmonisation guidance for administrative data sources

Contact the Government Statistical Service (GSS) Harmonisation Team

If you would like more information about the disability harmonised standard, please contact the team at Harmonisation@statistics.gov.uk.

You can find more information about Harmonisation on our webpage.