Presentation on theme: "Harmonisation of Persistent Illness, Impairment and Disability data collection in social surveys Chris White CHALE Office for National Statistics."— Presentation transcript:
1Harmonisation of Persistent Illness, Impairment and Disability data collection in social surveys Chris WhiteCHALE Office for National Statistics
2What I’ll talk about today Background to the disability harmonisation projectConcepts and definitionsDevelopment and testing of questions for the 1°HStd.Overview of results of the field testingFinal question set proposed at NSHG and GSS SPSC for approvalJust read the bullet points.
3Background 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 approachDevelop conceptual definitions and questions to classify disability to standardised data inputs and outputsHealth and Disability Harmonisation Sub-groupX-user workshops and consultations to determine core needsDetermine 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 sourcesThe 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 definitionb)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 sourcesd)recommend an implementation across social survey sources to harmonise data collection and the presentation of disability statistics
4Cross-sector Consultations Feb 2008: x-govt. workshop discussed findings of the RED ReportJun 2008: x-govt workshop on priorities forQuestion suite compositionClassification of disabilitySept 2008 – Jan 2009: mail out 1st draft questionsGather views beyond govt (e.g. academia, third sector);Determine priorities for cog. testingJun 2009 – Aug 2009:X-govt. workshop discuss cog. testing findings; produce 2nd draft QsMail out cog testing report; revised Qs for further comment pre field testingJan final consultation on findings of field test and questions pre presentation to NSHG and SPSC in March and AprilTo 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.
5Findings from cross-govt. workshops Recommendation 4.3 of the RED approved for actionStandards should be sensitive to future EA legislationMust balance national and European data needsDefinitions, questions, classification preferences varied x-govtMedical model v Social model v ICF biopsychosocial modelKey priorities agreed for the harmonised questions:Monitoring core DDA population succinctly as possibleFunctionality to feed European data needs thru concept alignmentAdequate level of continuity in outputsRelationship to Census 2011 question measured and knownDevelop secondary standard for capturing participation restriction and causesThe 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.
6Psychosocial attributes & coping Compensatory strategies Concept of DisabilityThe disablement process used as conceptual frameworkTo derive a working definitionDevelop questions to measure the definitionMedical careExternal supportsEnvironmentDisease Impairment Functional Activity ParticipationLimitation Restriction RestrictionThe Disablement Process:describes how chronic and acute conditions affect functioning in specific body systems, generic physical and mental actions, and activities of daily life, anddescribes 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 factorsLifestyle changesPsychosocial attributes & copingCompensatory strategiesAdapted from Verbrugge & Jette, 1994
7Definitions of disability Concept is multi-faceted: definitions largely based on 2 modelsSOCIAL MODEL: distinguishes disability from impairmentsdisability is the restriction of activity and participation, caused by aspects of society which take insufficient account of the needs of people with impairmentMEDICAL MODEL: abnormal attribute of the individualwhich requires treatment or special services to help enable social inclusion and participationICFHD: presents disability as a processBrings together medical, societal and individual factors and the interactions between them to define disabilityincludes traditional data on illness and activity restrictions, together with societal factors causing participation restrictionsThe 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.
8Review of qs on LSI\ ‘Disability’ in surveys Life Opportunities SurveyDo 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 EnglandDo 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 SurveyDo you have any long standing illness, disability or infirmity lasting or expected to last for 12 months or more?Annual Population Survey\Labour Force SurveyDo you have any health problems or disabilities that you expect will last for a year or more?
9Problems with these questions Mix concepts of illness, impairment and disabilityYou can’t disentangle illness from disability or impairmentAPS excludes the term illnessConflicts with conceptual framework of the disablement processTime frames differPast and/or expectation it will last 12 months or moreVague period of timeHarmonise to conceptual framework and legislationConsistent time frame 12 months or more - past or expectation classifiesAsks about physical or mental health conditions or illnesses onlyDetermine impact on prevalence excluding terms disability\impairment in testingThe 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 questionIssues respondents raised:Variation in interpretation of key terms disability\impairmentLength and sub-clauses
101°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 %
11Interviewer Instructions Provide guidance regarding coverage of terms:Includes impairments and developmental conditions such as:Sensory deficitsMobility difficultiesLearning difficulties such as dyslexiaLearning disabilities such as Down’s syndrome or cerebral palsyAutism and Asperger's syndromeMemory difficulties caused by dementia or injuryAnd health conditions such as:DepressionCommon illnesses such as asthma, diabetes, heart diseaseSeasonal conditions such as hay fever which recur
12Review of type of impairment Qs to add detail to Q1 Some focused more on impairment types e.g.:VisionHearingBreathing Problems (related to heart or respiratory disease)Learning disabilityOthers 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 understandContinenceCommunication related to sensory impairmentIdentifies 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:
13Results of consultation with stakeholders Useful to collect information on condition\impairment typeFits ICF framework and disablement process modelProvides context as to the nature of the functional impact of the illnessImpairment affecting function preferred to health conditionsBlindness or partial sight rather than glaucomaStamina or breathing rather than heart disease or COPDFormat should be guided by testing:Open response recording up to sixPre-defined independent category list with a show cardRouteing – impact on prevalence balanced by cost savingsTake account of Equality Act guidelinesEarlier 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.
14List agreed and tested at stage 2 Ask if has physical\mental health condition or illnessDoes 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 concentratingMemoryMental healthStamina or breathingSocially or behaviourally (for example associated with Autistic Spectrum Conditions)Other (please specify)
15Field test results - % Prevalence 16 years and above
16Sub-group decision on final list and routeing Add term FATIGUE to stamina or breathing categoryExpand 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 conditionAlternative version for comprehensive sample coverageDo you have any health conditions or illnesses which affect you in any of the following areas?
17Review 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; OtherGLF\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?
18Issues with these questions EXTENT OF RESTRICTION – variation in termsSubstantial difficulty – used in DDA\EA legislation (FRS\LOS)Substantially limit day-to-day activities – used in LFS\APSLimit activities in any way \ strongly limited GLFLimited A Lot, A Little – used in Census 2011TIME FRAMES – none state a time frameEU-SILC REGULATION – past 6 months or moreEQUALITY ACT – past 12 months OR last 12 months or more\rest of lifeMEDICATION OR TREATMENTWhether activities would be limited without
19Findings of cognitive testing and consultations ROUTED – Only asked of those reporting a health condition or illnessINTERVIEWER INSTRUCTIONS – standardise frames of referenceALTERNATIVE TERM TO LIMITED - Difficulty / Reduced abilityEXTENT SHOULD BE CAPTURED -Relationship between terms must be tested (Substantial, Strongly, A Lot)Effect of extent on disability prevalence overall must be testedPreference for plain english terminology (a lot and a little)TIME FRAME – meet DDA\EqA and EU-SILC guidelinesQUESTION ELICITING RESTRICTION WITHOUT MEDICATIONCumbersome, unlikely to deliver useful informationas 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 relevantField testing of this question had three principal objectives:a) to establish the level of coherence with other data sources capturing similar datab) 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
20Questions tested at stage 2 Routed from question capturing persistent illnessExtent 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; or3.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; or12 months or more.
21Field 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.
22Field 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.
23Proposals 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 activitiesSecondary 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.
24Proposals to NSHG – March 2011 Question 1a. - establish whether has a physical or mental health condition or illness, long-lasting in natureAsk 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 mentalhealth conditions or illnesses lasting or expected to last 12 months or more?1. Yes2. NoSpontaneous only:3. Don’t know4. RefusalInterviewer InstructionsProvide 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 depressionfor implementation in surveys capturing data face-to-face interview
25Proposals to NSHG – March 2011 Question 1b(i) (standard version): type of impairmentAsk if 1a = YesDoes this condition or illness\do any of these conditions or illnesses affect you inany 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 concentratingMemoryMental healthStamina or breathing or fatigueSocially or behaviourally (e.g. associated with Autistic Spectrum Conditions)Other (please specify)
26Proposals to NSHG – March 2011 Question 1b(ii) (optional version):Whether any physical or mental health condition or illness affectsfunctioning, irrespective of whether a positive answer was given toQuestion 1a.Ask AllDo you have any health conditions or illnesses which affect you in any ofthe following areas?Continue as for Question 1b(i) same categories
27Proposals to NSHG – March 2011 Question 2a - Whether a person with a persistent health condition or illness has activity restrictionAsk if 1a = YesDoes 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 lot2. Yes, a little3. Not at allInterviewer 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 boundNormal 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.
28Proposals to NSHG – March 2011 Question 2b – duration of activity restrictionAsk if 2a = Yes, a lot or Yes, a littleFor how long has your ability to carry-out day-to-day activities beenreduced?Running prompt:1. Less than six months2. Between six months and 12 months3. 12 months or more
29Proposals to NSHG – March 2011 Classification of disability in terms of the Equality ActQuestion 1a = Yes AND Question 2a = Yes, a little OR Yes, a lotEU-SILC long-standing health condition or illnessQuestion 1a = YesEU-SILC classification of disability by extentEstimate of severely hampered in daily activitiesQuestion 1a = Yes AND Question 2a = Yes, a lot ANDQuestion 2b = Between 6 months and 12 months OR 12 months or moreEstimate of hampered to some extent in daily activitiesQuestion 1a = Yes AND Question 2a = Yes, a little AND
30Next StepsImplementation across surveys using face-to-face interview modeConduct 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