Long lasting health conditions and illness harmonised standard
This harmonised standard is under development.
You can find more information about this in the ‘Further information’ section of this guidance. If you would like to be involved with this work, please contact us at Harmonisation@statistics.gov.uk.
|Publication date:||18 June 2020|
|Owner:||GSS Harmonisation Team|
|Who this is for:||Users and producers of statistics|
|Type:||Harmonisation standards and guidance|
What is harmonisation?
Harmonisation is the process of making statistics and data more comparable, consistent and coherent. This harmonised standard sets out how to collect and report statistics to ensure comparability across different data collections in the Government Statistical Service (GSS). This produces more useful statistics that give users a greater level of understanding about this topic.
What do we mean by long lasting health conditions and illness?
Long lasting health conditions and illness is a topic of interest across government. The 2021 Census in all four countries of the United Kingdom will collect data on this, although the data may not be comparable.
This standard does not refer to disability. The way individuals view disability varies and the term itself often makes people think about the most severe physical disabilities. Some individuals with impairments may not identify as being disabled.
Questions and response options (inputs)
The harmonised question on this topic is designed to collect basic information, for use in the majority of surveys. It is not designed to replace questions used in specialist surveys where more detailed analysis is required.
|Do you have any physical or mental health conditions or illnesses lasting or expected to last for 12 months or more?||Yes
Using this standard
Guidance for data collection
This question is to be asked to respondents aged 16 and over.
This question can be asked by proxy for respondents aged under 16.
If respondents are too ill to respond on their own behalf, proxy responses from a family member or friend can be recorded. For those not able to speak English, a translator should assist with the data collection.
Spontaneous responses can be recorded but should not be presented as options to respondents.
Guidance on the coverage of conditions and illnesses
Interviewers should provide guidance about the coverage of conditions and illnesses if asked for clarification. For example, a respondent may state their mobility is impaired but is unsure whether this classifies as a long lasting condition or illness.
What is and isn’t covered
As a guide, this standard includes physical or mental health conditions:
- lasting or expected to last for 12 months or more
- that a person is likely to have for the rest of their life
- that are likely to need some level of supervision and treatment over a long period of time
- that are not curable, even if medication or treatment can control symptoms
- which flare up intermittently, but the exacerbation has a shorter duration than 12 months (e.g. hayfever)
- which may not be perceived as serious and do not affect day-to-day activities but are nevertheless long lasting
- which are managed by treatment and lifestyle adjustments and do not affect day-to-day activities, but are nevertheless long lasting
This standard does not capture temporary conditions, however serious they might be.
Equality Act 2010
What this question is designed for
The question is designed to include:
- sensory deficits
- non-temporary mobility problems including dyspraxia and cerebral palsy
- developmental conditions such as Autism Spectrum Disorder (ASD), which includes Asperger’s syndrome, and Attention Deficit Hyperactivity Disorder (ADHD)
- conditions associated with learning impairments such as Down’s syndrome or dyslexia
- common conditions and illnesses such as: asthma, diabetes, heart and other circulatory conditions, respiratory conditions, digestive conditions, anxiety and depression – if they have lasted or are expected to last 12 months or more
- seasonal conditions such as hay fever which recur and have lasted or are expected to recur in the future
This question is not designed to measure impact on an individual’s daily activities. The activity restriction standard measures that.
Types of data collection this standard is suitable for
This question measures any self-reported health conditions or illnesses lasting or expected to last a year or more. It is for use in social surveys.
The standard can be used for:
- interviewer led questionnaires
- Computer Assisted Personal interviewing (CAPI)
- Computer Assisted Telephone Interviewing (CATI)
- paper based and online self-completion forms
Presenting and reporting the data (outputs)
These tables show the output categories for long lasting physical or mental health conditions or illness. We are not prescribing a code but have given examples.
The coding used should comply with the coding conventions used in the specific survey source.
Suggested variable name: HealIll
|Has a long lasting health condition or illness||1|
|Does not have a long lasting health condition or illnesses||2|
Implications for classifications
|EU-SILC: Long standing health problem or illness||1|
|EU-SILC: No long standing illness||2|
|EU-SILC: Not severely hampered in daily activities||2|
|EU-SILC: Not hampered in daily activities to some extent||2|
|Equality Act: Not core currently disabled||2|
Outputs that use this standard are comparable with other surveys that also use this standard. However, we would not recommend comparing levels of long lasting health conditions and illness from outputs using this standard with other outputs that use an alternative measure.
Comparability across the censuses
The 2011 Censuses for England and Wales, Scotland and Northern Ireland all used different questions on long lasting health conditions and illness. None of them produced comparable data on this topic.
The 2021 Census in England and Wales plans to use this standard for long lasting health conditions and illness. However, as this will be different from the questions used in the 2011 Census for England and Wales, the data from these two censuses will not be comparable.
The 2021 Census for Scotland plans to use the same question on long lasting health conditions and illness as the 2011 Census for Scotland. This means the data from these two censuses will be comparable. However, the data will still not be comparable with data from the 2021 Censuses for England and Wales or Northern Ireland.
Similarly, the 2021 Census for Northern Ireland plans to use the same question on long lasting health conditions and illness as the 2011 Census for Northern Ireland. This means the data from these two censuses will be comparable. However, the data will still not be comparable with data from the 2021 Censuses for England and Wales or Scotland.
Examples of when this standard has been used
Surveys that used this standard
- Labour Force Survey
- Family Resources Survey
- Health Survey for England
- Millennium Cohort Study
- National Travel Survey
- Scottish Household Survey
- Living Costs and Food Survey
Use in the census
This standard, together with the activity restriction standard, has been chosen for use in the 2021 Census in England and Wales.
Census questions need parliamentary approval. This will be sought during 2020. It is not anticipated that any of the questions on this topic will change.
More information on the comparability of census data on long lasting health conditions and illness is in the comparability section of this page.
Development of this standard
A topic group featuring various government departments, academics and external organisations designed the question.
Various proposals underwent cognitive testing. This testing looked at how respondents react to different versions of the question and checked that the questions correctly capture whether a respondent has a disability according to the Equality Act.
Do you have any long standing illness, disability or infirmity? By long standing I mean anything that has troubled you over a period of at least 12 months or that is likely to affect you over a period of at least 12 months
Do you have any health problems or disabilities that you expect will last for more than a year?
Do you have any long standing illness, disability or infirmity by long standing I mean anything that has troubled you over a period of time or is likely to affect you over a period of time?
Do you have any long standing physical or mental impairment, illness or disability? By long standing I mean anything that has affected you over a period of at least 12 months or that is likely to affect you over a period of at least 12 months?
Social model of disability
This standard uses the social model of disability. This model focuses on reducing barriers for disabled individuals whereas the medical model focuses on the specific symptoms, conditions or illnesses that impair them.
An individual with an impairment who lives and works in a suitably adjusted environment may not be considered as disabled under this model.
Using this question in the Welsh language
This harmonised standard was designed in the English language. At present we do not provide a Welsh language translation, as user demand for this standard is UK wide and Welsh language testing has not been completed to ensure a translation is comparable and appropriate. Harmonised standards based on Census research have been tested in the Welsh language, which is why we are able to provide Welsh versions of them. If you are interested in using a Welsh language version of a harmonised standard that has not been translated, please contact us: Harmonisation@statistics.gov.uk.
In October 2020, the National Statistician established the Inclusive Data Taskforce. It was designed to improve the UK’s inclusive data holdings in a broad range of areas. This includes the nine protected characteristics of the Equality Act.
In September 2021 the Taskforce recommendations were published. Some of these recommendations specifically refer to harmonisation.
In response to the recommendations, the Office for National Statistics (ONS) oversaw the publication of an Implementation Plan in January 2022. This gives information about the current and planned initiatives across the UK statistical system. It refers to a GSS Harmonisation Workplan, which was published in February 2022. This workplan includes reviewing, refining, and updating harmonised standards.
The workplan sets out activities for this standard in relation to disability. This includes:
- reviewing the topic area
- working with stakeholders and user groups to make sure disability standards meet user needs
- testing possible improvements and changes to the question design for the disability standards
Timescales for this work will be guided by the feedback the team gets throughout the project. We are now working to:
- run research and engagement activities throughout 2022
- publish the first findings from our research and engagement work in autumn 2022
- design draft questions for updating the disability standards by winter 2022 – this will depend on our research and engagement findings
- publish updated online self-completion questions by summer 2023, followed by telephone mode and face-to-face mode questions – this will depend on our research and engagement findings
If you would like to be involved with this work, please contact us at Harmonisation@statistics.gov.uk.
We are always interested in hearing from users so we can develop our work. If you use or produce statistics based on this topic, contact us at Harmonisation@statistics.gov.uk.
|11 January 2021||Guidance for data collection amended|