1. Harmonisation of Persistent Illness, Impairment and Disability data collection in social surveys
Chris White
CHALE Office for National Statistics

2. What I’ll talk about today
Background to the disability harmonisation project
Concepts and definitions
Development and testing of questions for the 1°HStd.
Overview of results of the field testing
Final question set proposed at NSHG and GSS SPSC for approval
Just read the bullet points.

3. Background Review of Equality Data:
ODI, GEO with ONS and DA’s were tasked to:
improve data collection coordination and propagation of statistics by developing & applying a principled approach
Develop conceptual definitions and questions to classify disability to standardised data inputs and outputs
Health and Disability Harmonisation Sub-group
X-user workshops and consultations to determine core needs
Determine fitness for purpose by:
Cognitive testing (interpretability of the questions)
Field testing (cross-validation with other sources and the Census q)
Recommend an implementation across social survey sources
The RED, published in 2007, identified a need to improve the co-ordination, comparability, quality, accessibility and presentation of disability statistics through developing and applying a principled approach to data collection and its propagation. An earlier report commissioned by DWP had also found weaknesses in disability data from surveys and had emphasised the advantages of taking a harmonised approach.
The RED tasked the ODI and GEO to wok with ONS and the Devolved Administrations to develop harmonised standards to meet this need and began deliberating in 2008 to this end with the inititation of the Health and Disability Harmonisation sub-group.
The objectives of the project were to:
a)establish a conceptual framework for disability definition
b)develop questions to measure disability in accordance with the definitions for use in social surveys (in the first instance)
c)test the performance of these questions in terms of interpretability and coherence with established sources
d)recommend an implementation across social survey sources to harmonise data collection and the presentation of disability statistics

4. Cross-sector Consultations
Feb 2008: x-govt. workshop discussed findings of the RED Report
Jun 2008: x-govt workshop on priorities for
Question suite composition
Classification of disability
Sept 2008 – Jan 2009: mail out 1st draft questions
Gather views beyond govt (e.g. academia, third sector);
Determine priorities for cog. testing
Jun 2009 – Aug 2009:
X-govt. workshop discuss cog. testing findings; produce 2nd draft Qs
Mail out cog testing report; revised Qs for further comment pre field testing
Jan final consultation on findings of field test and questions pre presentation to NSHG and SPSC in March and April
To obtain the views of cross-sector organisations a number of consultation events were held.
The first consultation was a workshop organised by ODI which brought together statutory organisations and arms length bodies with a clear remit for policy development in the area of disability and reliant on disability data to determine need for services and monitoring of government indicators.
This workshop explored data needs and current uses of disability data, what is collected in sources, whether it was fit for purpose given changing legislation and the RED and what conceptual frameworks and definitions were applied.
ONS organised a follow-up workshop to build on the evidence gathered and explore further the preferences for definitions and conceptual frameworks and how these could be operationalised with the development of survey inputs.
These workshops led to the construction of a first draft of questions which were circulated more widely to academia and third sector organisations between Sept 2008 and January 2009 to inform cognitive testing priorities.
A further consultation was held across government, academia and the third sector during June 2009-Aug 2009 on a second draft of questions developed following the findings of the cognitive testing. These views were then fed into the third draft of questions which were field tested on the Opinions Survey during Oct 2009 – February 2010 and a second round of field testing during May-July 2010.
The findings of the field testing were discussed in sub-group meetings and a final paper on harmonised disability concepts, definitions and standards was circulated for final views before presentation at the National Statistics Harmonisation Group in March.

5. Findings from cross-govt. workshops
Recommendation 4.3 of the RED approved for action
Standards should be sensitive to future EA legislation
Must balance national and European data needs
Definitions, questions, classification preferences varied x-govt
Medical model v Social model v ICF biopsychosocial model
Key priorities agreed for the harmonised questions:
Monitoring core DDA population succinctly as possible
Functionality to feed European data needs thru concept alignment
Adequate level of continuity in outputs
Relationship to Census 2011 question measured and known
Develop secondary standard for capturing participation restriction and causes
The workshops showed support for recommendation 4.3 of the Review of Equality Data as a good starting point to develop harmonised standards for disability data collections and outputs.
While the DDA legislation and its classification of the core disabled population with rights under the act was seen as necessary, the future implications of the Equality Act should be reflected in any standards developed.
The data requirements specified in legislation and European regulation must be balanced: ideally questions inputs should have the functionality to meet both needs.
There was variation in preferences for the definitions of disability rangeing from the pure medical model to the social model. The Prime Monister’s Strategy Unit report on improving the life chances of disabled people published in 2005 had drawn a clear distinction between impairment and disability, emphasising the importance of aspects of society which disable people with impairments.
Key priorities agreed were that the primary harmonised standard should focus on 1. monitoring the core DDA population as succinctly as possible. 2. Have functionality to meet EU-SILC data requirements to improve efficiency. 3. Adequate level of continuity of outputs. 4. Relatinship to the census question is known. 5. A secondary harmonised standard should be developed which produced measures of disability based on participation restriction caused by social barriers.

6. Psychosocial attributes & coping Compensatory strategies
Concept of Disability
The disablement process used as conceptual framework
To derive a working definition
Develop questions to measure the definition
Medical care
External supports
Environment
Disease  Impairment  Functional  Activity  Participation
Limitation Restriction Restriction
The Disablement Process:
describes how chronic and acute conditions affect functioning in specific body systems, generic physical and mental actions, and activities of daily life, and
describes the personal and environmental factors that speed or slow disablement, namely, risk factors, interventions, and exacerbators.
Disability is defined as difficulty doing activities in any domain of life (from hygiene to hobbies, errands to sleep) due to a health or physical problem.
It distinguishes intrinsic disability (without personal or equipment assistance) and actual disability (with such assistance).
Disability is not measured as a gap between personal capability and environmental demand.
Therefore it takes account of the environmental modifications and external supports.
A key point is the separation out of health conditions which may or may not produce impairments which affect bodily functions such as walking and thereby restrict daily activities and participation in key areas of life.
Risk factors
Lifestyle changes
Psychosocial attributes & coping
Compensatory strategies
Adapted from Verbrugge & Jette, 1994

7. Definitions of disability
Concept is multi-faceted: definitions largely based on 2 models
SOCIAL MODEL: distinguishes disability from impairments
disability is the restriction of activity and participation, caused by aspects of society which take insufficient account of the needs of people with impairment
MEDICAL MODEL: abnormal attribute of the individual
which requires treatment or special services to help enable social inclusion and participation
ICFHD: presents disability as a process
Brings together medical, societal and individual factors and the interactions between them to define disability
includes traditional data on illness and activity restrictions, together with societal factors causing participation restrictions
The concept of disability is multi-faceted and definitions have largely centred around two conceptual models; the ‘social model’ and the ‘medical model’.
The pure social model distinguishes disability from impairment, emphasising these terms are not interchangeable; impairment is a long-term characteristic of an individual affecting functioning and/or appearance. Conversely, disability is the restriction of activity and participation, caused by aspects of society which take insufficient account of the needs of people with impairment. The problem lies in society’s response to the individual’s needs, not the individual.
The medical model defines disability as an abnormal attribute of the individual which requires treatment or special services to help enable social inclusion and participation. The problem is the individual’s impairment and lack of functioning, rather than a defect of society.
The recent commissioned LOS survey had chosen a hybrid approach to define disability based on the ICF biopsychosocial model which brings together medical, individual and societal factors. This has the advantage of including the collection of traditional data on activity restriction, long-standing illness and impairment, as well as data on the importance of aspects of society which restrict the participation of people with impairment relative to those without impairments. This approach has strong links with the disablement process framework and was agreed as the basis with which to define disability for statistical purposes as it enables the collection of traditional data on activity restriction, long-standing illness and impairment, as well as data on the importance of aspects of society which restrict the participation of people with impairment relative to those without impairments.

8. Review of qs on LSI\ ‘Disability’ in surveys
Life Opportunities Survey
Do you have any long-standing impairment, disability or illness lasting or expected to last for a period of 12 months or more?
General Lifestyle\English Housing\Health Survey for England
Do you/does (..) have any long-standing illness, disability or infirmity - by long-standing I mean anything that has troubled you over a period of time or that is likely to affect you/him/her over a period of time?
Family Resources Survey
Do you have any long standing illness, disability or infirmity lasting or expected to last for 12 months or more?
Annual Population Survey\Labour Force Survey
Do you have any health problems or disabilities that you expect will last for a year or more?

9. Problems with these questions
Mix concepts of illness, impairment and disability
You can’t disentangle illness from disability or impairment
APS excludes the term illness
Conflicts with conceptual framework of the disablement process
Time frames differ
Past and/or expectation it will last 12 months or more
Vague period of time
Harmonise to conceptual framework and legislation
Consistent time frame 12 months or more - past or expectation classifies
Asks about physical or mental health conditions or illnesses only
Determine impact on prevalence excluding terms disability\impairment in testing
The current questions mix the concepts of illness, disability, infirmity and impairment, suggesting these terms are interchangeable. The importance of the social model approach to classifying disability outlined in the Prime Minister’s Strategy Unit document, the Equality Act legislation and the clear distinction drawn in EU-SILC guidelines for collecting information on chronic illness distinct from disability strongly opposes this mixing of concepts in this question.
The findings from the extensive consultation across government, academia and the voluntary sector, and the lessons learnt from cognitive and field testing undertaken as part of the development of the LOS also strongly supported the disentanglement of the concepts of health conditions and illnesses lasting a year or more from those of impairment and disability.
Cognitive testing supported the exclusion of the term impairment from the body of the question
Issues respondents raised:
Variation in interpretation of key terms disability\impairment
Length and sub-clauses

10. 1°Harmonised standard question tested
Do you have a physical or mental health condition or illness/ any physical or mental health conditions or illnesses lasting or expected to last 12 months or more?
Field test results:
Harmonised question (opinions may-july 2010) 33.7%
Family Resources Survey %
General Lifestyle Survey %
Life Opportunities Survey %
Annual Population Survey %

11. Interviewer Instructions
Provide guidance regarding coverage of terms:
Includes impairments and developmental conditions such as:
Sensory deficits
Mobility difficulties
Learning difficulties such as dyslexia
Learning disabilities such as Down’s syndrome or cerebral palsy
Autism and Asperger's syndrome
Memory difficulties caused by dementia or injury
And health conditions such as:
Depression
Common illnesses such as asthma, diabetes, heart disease
Seasonal conditions such as hay fever which recur

12. Review of type of impairment Qs to add detail to Q1
Some focused more on impairment types e.g.:
Vision
Hearing
Breathing Problems (related to heart or respiratory disease)
Learning disability
Others focus more on capabilities (e.g. FRS DDA suite):
Manual dexterity (usings hands to carry-out everyday tasks)
Mobility (walking short distances and climbing stairs)
Ability to concentrate learn and understand
Continence
Communication related to sensory impairment
Identifies the core population with rights under the Act:
A physical or mental impairment which has a substantial difficulties on a person’s ability to carry out normal day-to-day activities in at least one of a specified list of capacities:

13. Results of consultation with stakeholders
Useful to collect information on condition\impairment type
Fits ICF framework and disablement process model
Provides context as to the nature of the functional impact of the illness
Impairment affecting function preferred to health conditions
Blindness or partial sight rather than glaucoma
Stamina or breathing rather than heart disease or COPD
Format should be guided by testing:
Open response recording up to six
Pre-defined independent category list with a show card
Routeing – impact on prevalence balanced by cost savings
Take account of Equality Act guidelines
Earlier DQS drafts attempted to cover both conditions and impairments into one category list. Consultation showed that providing a comprehensive list to capture all different categories of medical conditions would require a list far too extensive for inclusion in a short set recommended for this harmonised set. It was concluded that the most useful and straightforward approach would be to gather information on areas of difficulty or impairment that people have, regardless of their different conditions. The need to develop a standard list of medical conditions requires further consideration but would be outside the remit of this project on disability status.

14. List agreed and tested at stage 2
Ask if has physical\mental health condition or illness
Does this condition or illness\do any of these conditions or illnesses affect you in any of the following areas?
Show card and code all that apply:
Vision (for example blindness or partial sight)
Hearing (for example deafness or partial hearing)
Mobility (for example walking short distances, climbing stairs, lifting\carrying)
Learning or understanding or concentrating
Memory
Mental health
Stamina or breathing
Socially or behaviourally (for example associated with Autistic Spectrum Conditions)
Other (please specify)

15. Field test results - % Prevalence 16 years and above

16. Sub-group decision on final list and routeing
Add term FATIGUE to stamina or breathing category
Expand mobility category:
MOBILITY: (walk short distances and climb stairs)
MANUAL DEXTERITY (lift and carry objects \ use a key board)
Routeing to link impairment to persistent condition
Alternative version for comprehensive sample coverage
Do you have any health conditions or illnesses which affect you in any of the following areas?

17. Review of activity restriction Qs to classify disability
LOS\FRS - Does this\do these health problem(s) or disability(ies) mean that you have substantial difficulties with any of these areas of your life?
Mobility; Lifting; Manual Dexterity; Continence; Communication;
Memory\Ability to learn; Physical danger; Balance; Other
GLF\EHS\HSE - Does this illness or disability (do any of these illnesses or disabilities) limit your activities in any way?
GLF only - Would you say your activities are limited or strongly limited?
APS\LFS - Do these health problems or disabilities, when taken singly or together, substantially limit your ability to carry out normal day to day activities? If you are receiving medication or treatment, please consider what the situation would be without the medication or treatment.
2011 Census – Are your day-to-day activities limited because of a health problem or disability which has lasted or is expected to last for 12 months or more?

18. Issues with these questions
EXTENT OF RESTRICTION – variation in terms
Substantial difficulty – used in DDA\EA legislation (FRS\LOS)
Substantially limit day-to-day activities – used in LFS\APS
Limit activities in any way \ strongly limited GLF
Limited A Lot, A Little – used in Census 2011
TIME FRAMES – none state a time frame
EU-SILC REGULATION – past 6 months or more
EQUALITY ACT – past 12 months OR last 12 months or more\rest of life
MEDICATION OR TREATMENT
Whether activities would be limited without

19. Findings of cognitive testing and consultations
ROUTED – Only asked of those reporting a health condition or illness
INTERVIEWER INSTRUCTIONS – standardise frames of reference
ALTERNATIVE TERM TO LIMITED - Difficulty / Reduced ability
EXTENT SHOULD BE CAPTURED -
Relationship between terms must be tested (Substantial, Strongly, A Lot)
Effect of extent on disability prevalence overall must be tested
Preference for plain english terminology (a lot and a little)
TIME FRAME – meet DDA\EqA and EU-SILC guidelines
QUESTION ELICITING RESTRICTION WITHOUT MEDICATION
Cumbersome, unlikely to deliver useful information
as asking those whether their activities were limited by a health condition or illness when they had already stated they did not have a long-lasting condition was superfluous and would risk irritating the respondent.
Views largely centred around the need to identify activity restriction currently and for how long, not ask respondents to hypothesise or speculate about their likely restriction if medication was withdrawn as this added unnecessary complexity and would introduce a high level of subjective between respondent perceptions about the likely effect, leading to spurious outputs.
INTERVIEWER INSTRUCTIONS –
Must include list of daily activities relevant
Field testing of this question had three principal objectives:
a) to establish the level of coherence with other data sources capturing similar data
b) to determine the relationship between the terms ‘substantial long-term effect’ used in the FRS and LOS, ‘limited’ and ‘strongly limited’ used in the GLF, ‘limited a lot’ and ‘limited a little’ used in the Census 2011 question, and the terms ‘a lot’ of reduced ability and ‘a little’ reduced ability used in the field test question.
c) to assess whether the prevalence of activity restriction is inflated by capturing extent

20. Questions tested at stage 2
Routed from question capturing persistent illness
Extent of activity restriction:
Does your condition or illness/do any of your conditions or illnesses reduce your ability to carry-out day-to-day activities?
1.Yes, A Lot;
2.Yes, A Little; or
3.Not at all.
Duration of activity restriction if yes a lot or yes a little:
For how long has your ability to carry-out day-to-day activities been reduced?
Less than 6 months;
Between 6 months and 12 months; or
12 months or more.

21. Field test results - % Prevalence 16 years and above
The proximity between the estimate derived from the FRS criterion of substantial difficulty in a capacity domain and the estimates from both the field test ‘a lot’ or ‘a little’ reduced ability to carry-out day-to-day activities and the Census 2011 ‘yes, limited a lot’ and ‘yes, limited a little’ suggests the term ‘substantial’ concurs with the combined responses of ‘a lot’ and ‘a little’. The term ‘strongly limited’ in the GLF question is lower than both the field test question and Census 2011 question estimates of ‘a lot’ by approximately two percentage points. The GLF currently supplies estimates of the UK’s prevalence of severely limited in daily activities used in the EU-SILC data tables.
The sub-group accepted that a new harmonised question would be likely to elevate the proportion of the UK population designated as severely limited in daily activities for EU-SILC reporting. However, the proximity to established social survey sources and the Census 2011 question of the proposed harmonised questions, and the fact that the existing questions used to supply EU-SILC with illness and disability data do not comply with EU-SILC guidelines, the group concluded the timing was opportune to introduce a new question to capture activity restriction.
There was no evidence in the field testing that the capture of extent produced an artefactual inflation in prevalence by conflating extent categories compared with questions using dichotomised response categories.

22. Field test results – Impact of duration for EA and EU-SILC classification
The field test results demonstrate the effect of using duration to classify a case of disability is to reduce prevalence estimates; a 12 months or more time filter reduces the prevalence of activity restriction to 18.8 per cent, while a 6 months or more time filter reduces prevalence to 20.7 per cent. Consequently, the application of this filter for use in UK classifications will cause a discontinuity from FRS estimates and additionally be incoherent with the Census 2011 question. However, it will provide a conservative estimate of Equality Act disability. The sub-group agreed the inclusion of the time filter question as tested should be retained to provide data users with the agility to either exclude or include depending on the purpose of the analysis: for statistics comparable with the Census 2011 and historical FRS and to give an upper range for Equality Act purposes, the time filter can be excluded from the classification, but for a conservative estimate, the 12 month time filter can be applied.
The time filter improves comparability with EU-SILC historical estimates; the estimate of ‘severely limited’ using the category ‘a lot’ in question 2a and including the categories between 6 months and 12 months and 12 months or more is 9.9 per cent, while the estimate of ‘limited but not severely’ using the category ‘a little’ and the same duration categories is 11.0 per cent (see table 3 in Annex 1). The questions have been sent to Eurostat for consideration.

23. Proposals to NSHG – March 2011
Primary standard definition –
A disabled person is someone with a persistent (physical or mental) health condition or illness, which impairs their functioning and reduces their ability to carry-out day-to-day activities
Secondary standard definition –
A disabled person is someone with a persistent (physical or mental) health condition or illness. As a result, their participation in key areas of life is restricted relative to people without impairments, because of aspects of society which take inadequate account of the needs of people with impairments.

24. Proposals to NSHG – March 2011
Question 1a. - establish whether has a physical or mental health condition or illness, long-lasting in nature
Ask all if >=16 years of age, ask by proxy if <16 or not fit to respond in person.
Do you have a physical or mental health condition or illness/any physical or mental
health conditions or illnesses lasting or expected to last 12 months or more?
1. Yes
2. No
Spontaneous only:
3. Don’t know
4. Refusal
Interviewer Instructions
Provide guidance on conditions or illnesses or impairments covered:
All impairments such as learning disabilities, ASC, sensory deficits, mobility problems, seasonal conditions which recur as well as general health conditions such as heart disease, diabetes and depression
for implementation in surveys capturing data face-to-face interview

25. Proposals to NSHG – March 2011
Question 1b(i) (standard version): type of impairment
Ask if 1a = Yes
Does this condition or illness\do any of these conditions or illnesses affect you in
any of the following areas?
Show card and code all that apply:
Vision (for example blindness or partial sight)
Hearing (for example deafness or partial hearing)
Mobility (for example walking short distances or climbing stairs)
Dexterity (for example lifting and carrying objects, using a keyboard)
Learning or understanding or concentrating
Memory
Mental health
Stamina or breathing or fatigue
Socially or behaviourally (e.g. associated with Autistic Spectrum Conditions)
Other (please specify)

26. Proposals to NSHG – March 2011
Question 1b(ii) (optional version):
Whether any physical or mental health condition or illness affects
functioning, irrespective of whether a positive answer was given to
Question 1a.
Ask All
Do you have any health conditions or illnesses which affect you in any of
the following areas?
Continue as for Question 1b(i) same categories

27. Proposals to NSHG – March 2011
Question 2a - Whether a person with a persistent health condition or illness has activity restriction
Ask if 1a = Yes
Does your condition or illness/do any of your conditions or illnesses reduce your ability to carry-out day-to-day activities?
Running prompt:
1. Yes, a lot
2. Yes, a little
3. Not at all
Interviewer instructions:
Typical day-to-day activities are washing and dressing, cleaning the living space, using transport, climbing stairs, paying bills, walking short distances, lifting and carrying objects.
Extent categories are determined by how much assistance is needed; a lot indicates largely reliant on another for daily activities, house bound
Normal day to day activities are washing and dressing, household cleaning, cooking, shopping for essentials, using public or private transport, walking a defined distance, climbing stairs, remembering to pay bills, and lifting objects from the ground or a work surface in the kitchen. Guidance on interpreting extent categories are in the context of how much assistance a person needs to carry-out daily activities and whether they are house bound; a lot should be interpreted as usually needing the assistance of family, friends or personal social services for a number of or all normal daily activities.
If respondents are too ill to respond on their own behalf, if present, proxy responses from a family member or friend can be recorded. For those not able to speak English, translators should be used to assist with the data collection.

28. Proposals to NSHG – March 2011
Question 2b – duration of activity restriction
Ask if 2a = Yes, a lot or Yes, a little
For how long has your ability to carry-out day-to-day activities been
reduced?
Running prompt:
1. Less than six months
2. Between six months and 12 months
3. 12 months or more

29. Proposals to NSHG – March 2011
Classification of disability in terms of the Equality Act
Question 1a = Yes AND Question 2a = Yes, a little OR Yes, a lot
EU-SILC long-standing health condition or illness
Question 1a = Yes
EU-SILC classification of disability by extent
Estimate of severely hampered in daily activities
Question 1a = Yes AND Question 2a = Yes, a lot AND
Question 2b = Between 6 months and 12 months OR 12 months or more
Estimate of hampered to some extent in daily activities
Question 1a = Yes AND Question 2a = Yes, a little AND

30. Next Steps
Implementation across surveys using face-to-face interview mode
Conduct further testing of qs to measure 2°harmonised def.
Continue work in on adaptation of these questions for other modes of survey administration, including presentations designed for people with specific types of impairments (Braille, easy read)
Develop questions for use in administrative sources