| A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | Q | R | S | T | U | V | W | X | Y | Z | AA | AB | |
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1 | Type of data | International, national or local | Years running | Frequency | Sample | Geography of the sampling | Topics/focus | Health outcomes | Measures of ethnicity | Ethnic minority boost? | Measures of immigration | Immigration boost? | Other ethnicity/migration measures | Linked data/dataset | Years of linked dataset | Dataset documentation link | Exemplar ethnicity/health research | Access | ||||||||||
2 | Understanding Society | Household panel survey | National | 2009-present | Yearly | 40,000 households children age 10+ onwards and adults | A range of administrative, electoral, statistical and other geographies (special license required) - see https://www.understandingsociety.ac.uk/sites/default/files/downloads/working-papers/2011-01.pdf | Wide-ranging; family dynamics, household organisation, income, welfare, labour market, social participation, and various others. | Extensive, including: self-rated health; health limits activities; functional limitations; diagnosed conditions; GHQ/emotional health; health service data; health behaviours. Nurse assessment (waves 2/3) - biomarkers; genetics; epigenetics; anthropmetrics; grip strength; lung function. | 17 ethnic groups with an option for other | Yes, 6000 extra ethnic minorities, in addion to 5500 in main sample. Designed to reach 1000 for each of five main ethnic minority groups. 5 minute additional questionnaire. | Country of birth; childhood language; migration history | Yes from 2015 onwards; a new immigrant and ethnic minority boost sample comprising around 3,000 households and 4,500 responding adults. | Perceived discrimination and harassment; language and literacy; dimensions of identity; religious practice. | British Household Panel Survey. Admin data - education, DWP. Census. See: https://www.understandingsociety.ac.uk/documentation/using-linked-data | 1991-2009 | https://www.understandingsociety.ac.uk/documentation/mainstage/dataset-documentation | Ethnic inequalities in limiting health and self-reported health in later life revisited: http://jech.bmj.com/content/70/7/653 | Special license required for geographical identifiers and linked admin data. | |||||||||
3 | Born in Bradford (BiB) | Birth cohort | Local | Cohort recruited 2007-2010. Ongoing. | Adhoc (see BiB Growing Up study below) | 12,453 women and 3353 of their partners across 13,776 pregnancies and 13,858 children. | N/A | Researchers are looking at the links between the circumstances of a child’s birth, the context in which they grow up, their health and well-being and their educational progress.' | Haematology/biochemistry results; ultrasound data; general practice data; pregnany records; wellbeing; health behaviours (diet; exercise; smoking); mental state; anthropometrics; GHQ. | 5 ethnic groups with an option for other. These are then probed for finer distinction in subsequent questions. | N/A (half of babies born in Bradford have parents of South Asian origin) | For mothers: country of birth; length of time in country. Mothers asked to state ethnicity of partner and baby, and theirs and partner's parents' ethncity. For fathers: also asked these questions if recruited. | No | Language | Department for Education (National Pupil database); NHS health records (GP, Hospital, digital); Department of Health, Local Authority (Council) (Children's service, including social care). | Data dictionary: https://borninbradford.nhs.uk/wp-content/uploads/Baseline_questionnaire_Full_Dict.pdf Study protocol (including detailed information on cohort/measures): https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-8-327 Access the data: https://borninbradford.nhs.uk/research/how-to-access-data/ | Evaluation of ethnic disparities in detection of depression and anxiety in primary care during the maternal period: combined analysis of routine and cohort data: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4853643/ Variation and ethnic inequalities in treatment of common mental disorders before, during and after pregnancy: combined analysis of routine and research data in the Born in Bradford cohort: https://www.ncbi.nlm.nih.gov/pubmed/27071711 Maternal health inequalities and GP provision: investigating variation in consultation rates for women in the Born in Bradford cohort: https://www.ncbi.nlm.nih.gov/pubmed/27412173 | Access by proposal | ||||||||||
4 | BiB Growing Up | Birth cohort | Local | 2017-2019 | One off follow-up | 9,000 BiB mothers, 5,000 BiB partners (biological or non-biological carers of children) and 9,000 BiB children | N/A | The aim of Born in Bradford is to find out more about the causes of childhood illness by studying children from all cultures and backgrounds as their lives unfold. Mothers joined the study when they were pregnant and we collected information from them and their partners about their health, their families and their social and economic circumstances. We have collected information on their babies’ health and development at birth and as they grow up. | Full clinical and interview sweep as with BiB | Same measures as BiB | N/A | Same measures as BiB | Same measures as BiB | Same measures as BiB | Same measures as BiB | Same measures as BiB | Access the data: https://borninbradford.nhs.uk/research/how-to-access-data/ | Data still being collected | Access by proposal | |||||||||
5 | Southall And Brent REvisited Study (SABRE) | Cohort | Local | 1988-91; follow-up 1: 2011; follow-up 2: 2014-18 | Ad hoc; 3 rounds | Around 5,000 40-69 year olds (at baseline) | The Southall And Brent REvisited Study (SABRE) is a medical research study involving nearly 5000 European, Indian Asian and African Caribbean men and women. SABRE was first started in order to understand why some people are more likely than others to suffer from diabetes, coronary heart disease and strokes. At the time very little was known about whether people of different ethnicities might be more or less likely to suffer these disorders. The study collects a wide range of data on life circumstances/situations. | Diabetes, coronary heart disease, stroke. Diagnosed conditions, self-rated health, health behaviours, medications, depression, functional limitations | 21 categories, with 'other options' included | N/A | Country of birth, parents' country of birth, years in country. All South Asians and African Caribbeans were first generation migrants. | N/A | Linked NHS records and hospital episode data | N/A | https://www.sabrestudy.org/; https://discover.ukdataservice.ac.uk/catalogue/?sn=7852&type=Data%20catalogue | Tillin, T., Hughes, A. D., Mayet, J., Whincup, P., Sattar, N., Forouhi, N. G., ... & Chaturvedi, N. (2013). The relationship between metabolic risk factors and incident cardiovascular disease in Europeans, South Asians, and African Caribbeans: SABRE (Southall and Brent Revisited)—a prospective population-based study. Journal of the American College of Cardiology, 61(17), 1777-1786. Tillin, T., Hughes, A. D., Whincup, P., Mayet, J., Sattar, N., McKeigue, P. M., ... & SABRE Study Group. (2014). Ethnicity and prediction of cardiovascular disease: performance of QRISK2 and Framingham scores in a UK tri-ethnic prospective cohort study (SABRE—Southall And Brent REvisited). Heart, 100(1), 60-67. | No special conditions mentioned on UKDA. | |||||||||||
6 | Ethnic minority psychiatric illness rates in the community EMPIRIC | Cross-sectional survey | National | 1999/2000 | One off | 4281 ethnic minority adults aged 16-74. Sampled from Health Suvey for England (HSE) 1998/1999 | Not apparent from documentation | The overall aim of the Ethnic Minority Psychiatric Illness Rates in the Community (EMPIRIC) survey was to estimate the prevalence of psychiatric morbidity, as measured by standard screening instruments, among minority ethnic populations resident in England, and to compare prevalence rates between groups. Also, the survey aimed to examine use of related services and to examine key factors that may be associated with mental disorder, and ethnic differences in the risk of its contraction. The sample for the survey was drawn from Black Caribbean, Indian, Pakistani, Bangladeshi and Irish respondents to the Health Survey for England (HSE) of 1999 (held at the UK Data Archive under SN 4365), which had focused on minority ethnic groups. White adults selected from respondents to the HSE of 1998 (held under SN 4150) were also included in the sample. In addition to the quantitative survey, which included 4281 respondents, the EMPIRIC study also included a qualitative element. Interviews were achieved with 117 informants, purposively selected from quantitative survey respondents from within each ethnic group, according to CIS-R score. The intention was to investigate the cross-cultural validity of the standard screening instruments, which were designed and validated in a Western context. By encouraging informants to use their own words, the qualitative study explored the terms and definitions that they used to describe mental health. Users should note that only the data from the quantitative survey are currently held at the Archive. | Short Form 12 (SF12) Physical and Mental Health Summary Scales; Clinical Interview Schedule - Revised (CIS-R); Psychosis Screening Questionnaire (PSQ) - used to assess psychotic symptoms; self-reported general health, self-reported long-standing illness, GHQ scores | The survey followed up people from the HSE with the followig ethnic groups: · Indian · Pakistani · Bangladeshi · Black Caribbean · Irish · White British | N/A - whole sample ethnic minority | Country of birth; languages spoken | N/A | Discrimination/harassment; ethnicity-related cultural practices; ethnic identity; ethnic mixing; ethnicity-related atittudes. | HSE | 1998/1999 | http://webarchive.nationalarchives.gov.uk/20121006173435/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsStatistics/DH_4005698 Access data: https://discover.ukdataservice.ac.uk/catalogue/?sn=4685&type=Data%20catalogue | Sproston, K. and Nazroo, J. (2002) Ethnic Minority Psychiatric Illness Rates in the Community (EMPIRIC), London: The Stationery Office. King, M., Nazroo, J., Weich, S., McKenzie, K., Bhui, K., Karlson, S., ... & McManus, S. (2005). Psychotic symptoms in the general population of England. Social psychiatry and psychiatric epidemiology, 40(5), 375-381. Weich, S., Nazroo, J., Sproston, K., McMANUS, S. A. L. L. Y., Blanchard, M., Erens, B., ... & Tyrer, P. (2004). Common mental disorders and ethnicity in England: the EMPIRIC study. Psychological medicine, 34(8), 1543-1551. | No special conditions mentioned on UKDA. | |||||||||
7 | Health Survey for England with ethnic minority boost | Cross-sectional survey | National | 1999, 2004 | Whether HSE includes a boost sample seems ad hoc | ~20,000 in 1999, 10,000 in 2004. Around a 1/5 of sample chilldren. | Documentation states geographical identifiers left out of the dataset | The Health Survey for England is a series of surveys designed to monitor trends in the nation's health. The survey includes a number of core questions every year but also focuses on different health issues at each wave. | Extensive: anthropemtrics; smoking; alcohol consumption; diet; general health; prescribed medication; use of services; various biomarkers; psychological life; quality of life. A focus on CVD and related outcomes. Many additional health outcomes not listed here. | Black Caribbean, Black African, Indian, Pakistani, Bangladeshi, Chinese and Irish. | Yes. | Languages spoken; country of birth; date of immigration | No | Religion and cultural identity | Documentation mentions linking to NHS records but not apparent whether this is available | N/A | 1999: https://discover.ukdataservice.ac.uk/catalogue/?sn=4365&type=Data%20catalogue 2004: https://discover.ukdataservice.ac.uk/catalogue/?sn=5439&type=Data%20catalogue Cohort profile: https://www.ncbi.nlm.nih.gov/pubmed/22253315 | No special conditions mentioned on UKDA. | ||||||||||
8 | GP Patient Survey | Cross-sectional survey (aggregate data) | National | 2009-present | Yearly | ~800,000 patients | Results available at GP practice level and Clinical Commissioning Group level. | Satisfaction with GP services and various health questions | Limiting health condition, self-rated health, medical conditions, functional limitations, self-care, mental health, smoking | 18 categories in total including 'other' options | N/A | No | N/A | Religion | Note that there are many other patient surveys that can be accessed here: https://www.england.nhs.uk/statistics/statistical-work-areas/patient-surveys/ | N/A | Online analysis tool/explanation here: http://results.gp-patient.co.uk/report/explanation.aspx | Baker, J., Mitchell, R., & Pell, J. (2013). Cross-sectional study of ethnic differences in the utility of area deprivation measures to target socioeconomically deprived individuals. Social Science & Medicine, 85, 27-31. Erens, B., Primatesta, P. and Prior, G. (eds.) (2000) Health Survey for England: the health of minority ethnic groups 1999, volumes I and II, London: The Stationery Office. ISBN 0113224486. | No restrictions (aggregate data) | |||||||||
9 | The Census Microdata | Census | National | 2011 (most recent) | Decennially | Random 10% sample of whole population. Available at individual and household level. | Local authority level. Lower levels do not apepar to be publically available. | Population monitoring | Self-rated health, long-term limiting health problem, informal care | 5 main ethnic groups with multiple options under each including 'other' categories for each | N/A | Migration-related questions on previous addresses, intended length of stay, arrival date, passports held | N/A no boost needed as full population | Languages spoken and self-rated English proficiency | Understanding Society | https://www.ons.gov.uk/census/2011census/2011censusdata https://www.ons.gov.uk/census/2011census/2011censusdata/censusmicrodata/securemicrodata | The impact of limiting long term illness on internal migration in England and Wales: New evidence from census microdata: https://www-sciencedirect-com.sheffield.idm.oclc.org/science/article/pii/S0277953616304828 The spatial structure of chronic morbidity: evidence from UK census returns: https://link-springer-com.sheffield.idm.oclc.org/article/10.1186/s12942-016-0057-5 Pilot ethnic analysis of routine hospital admissions data and comparison with census linked data: CHD rates remain high in Pakistanis: http://www.emeraldinsight.com/doi/abs/10.1108/17570981211319393 | The safeguarded sample, which has some detail on varaibles removed to reduce risk of identification, is available via UKDA. The full census individual secure sample (CISS) microdata for England and Wales are accessed at the Office for National Statistics Virtual Microdata Laboratory. | ||||||||||
10 | Adult Psychiatric Morbidity Survey | Cross-sectional survey | National | 1993, 2000, 2007, 2014 | Every seven years | ~7500 16 and older | Analysis only possible at government office region or strategic health authority level given sample size | Mental disorder and associated outcomes, and their treatment (see health outcomes). Also: wellbeing; disability; physical health; pain; lifestyle behaviours; work and stress; life events | Prevalence of neurotic and psychotic illnesses based on diagnostic criteria. Service and medication use. Alcohol and illicit drugs. Suicidal thoughts. Co-morbidity with physical illnesses. | 5 main ethnic groups with multiple options under each including 'other' categories for each | No | No | No | Religious identity; discrimination | Permission was sought fro participants for linkage with NHS Central Register and Hospital Episode Statistics for 2014 data. | Ongoing | The 2014 dataset is still to be released by the 2007 dataset is available here: https://discover.ukdataservice.ac.uk/catalogue/?sn=6379&type=Data%20catalogue | Jordanova, V., Crawford, M. J., McManus, S., Bebbington, P., & Brugha, T. (2015). Religious discrimination and common mental disorders in England: a nationally representative population-based study. Social psychiatry and psychiatric epidemiology, 50(11), 1723-1729. | No special conditions mentioned on UKDA for 2007 data. | |||||||||
11 | Hospital episode statistics | Routine data | National | Ongoing | Ongoing | Whole population admitted, attended or had an appointment at hospital | A local auhority extract service is available for public health. Lower output area analysis is possible but by special agreement. | Details of all admissions, A and E attendances and outpatient appointments at NHS hospitals in England. | Clinical information about diagnoses and operations | 16 categories, including 'other' options | N/A | No | N/A no boost needed as full population | No | Linkage with other data are possible e.g. labour force survey. | N/A | https://digital.nhs.uk/data-services/hospital-episode-statistics/users-uses-access#Access to data | Ali, R., Barnes, I., Kan, S. W., & Beral, V. (2010). Cancer incidence in British Indians and British whites in Leicester, 2001–2006. British journal of cancer, 103(1), 143. Jack, R. H., Davies, E. A., & Møller, H. (2007). Testis and prostate cancer incidence in ethnic groups in South East England. International journal of andrology, 30(4), 215-221. https://www.bsg.ox.ac.uk/sites/www.bsg.ox.ac.uk/files/documents/BSG-WP-2015-005.pdf | Various levels of access - applications through https://digital.nhs.uk/data-and-information/data-services/data-access-request-service | |||||||||
12 | Citizenship Survey | Cross-sectional survey | National | 2001-2011 | Every two years | 10,000 adults (+ 5,000 ethnic minority boost). In 2003 there were supplementary booster samples of children (eight and nine-year-olds), young people (10 to 15-year-olds), and 20 local areas. | Output Areas. Secure version includes Police Force Area, Local Authority Districts, Wards, Health Areas, Middle Layer Super Output Areas (MSOA) and Lower Layer Super Output Areas (LSOA) | Questions cover a wide range of issues, including race equality, faith, feelings about the community, volunteering and participation, rights and responsibilities, discrimination and prejudice, extremism | Self-rated health, long-term health problem, long-term limiting health problem, informal care | 17 categories, including 'other options'; ethnic mix of household | Yes, 5000 ethnic minority boost sample | Country of birth, year of arrival, parent/s country of birth. | No | Language spoken at home, English proficiency; religion. | N/A | N/A | https://discover.ukdataservice.ac.uk/catalogue/?sn=7403&type=Data%20catalogue | Bécares, L., Nazroo, J., Albor, C., Chandola, T., & Stafford, M. (2012). Examining the differential association between self-rated health and area deprivation among white British and ethnic minority people in England. Social science & medicine, 74(4), 616-624. Becares, L., Stafford, M., & Nazroo, J. (2009). Fear of racism, employment and expected organizational racism: their association with health. The European Journal of Public Health, 19(5), 504-510. | Via UK Data Service. Secure version includes more detailed household information, precise geographies, and questions on extremism, immigration, and religion. | |||||||||
13 | European Social Survey | Repeated cross-sectional | International | 2002-present | Every two years | Minimum 1500 per country (800 for smaller countries) | By country | Some rotating modules for each 'round' (e.g. round 1 citizenship & immigration, round 2 care & health, economic mortality etc.). Asked at every wave: media and social trust, Subjective Well-Being, Social Exclusion, Religion, National and Ethnic Identity, gender, household, socio-demographics, politics, human values | Subjective well-being, happiness | European Standard Classification of Cultural and Ethnic Groups | No | year moved to country, country of birth, country of birth for both parents, plus Immigration specific questions asked at rounds 1 and 7 | No | discrimination, citizenship, language spoken at home, perception of beloning to an ethnic minority group in country of residence | The Cross-National Online Survey (CRONOS) is a pilot web panel recruited on the back of ESS Round 8 in three countries. CRONOS data can be linked to ESS Round 8 data | 6 waves of CRONOS 2016-2018 linked dataset documentation https://www.europeansocialsurvey.org/docs/cronos/CRONOS_user_guide.pdf | https://www.europeansocialsurvey.org/data/ | Missinne, S. and Bracke, P., 2012. Depressive symptoms among immigrants and ethnic minorities: a population based study in 23 European countries. Social psychiatry and psychiatric epidemiology, 47(1), pp.97-109., Meuleman, B., Davidov, E. and Billiet, J., 2009. Changing attitudes toward immigration in Europe, 2002–2007: A dynamic group conflict theory approach. Social science research, 38(2), pp.352-365. | access from https://www.europeansocialsurvey.org/data/# | |||||||||
14 | Bristol Stress and Health at Work Programme | Repeat survey | Local | 1998, 1999 | Twice (consecutive years) | Random selection from Bristiol electoral register. Phase 1: 7,069, Pase 2: 4,673 of those from P1 who agreed to be contacted again. 188 for lab phase selected from Time 2, mailing 2. Selection based on volunteer to follow up from P2 for those 'stressed', 1 in 4 selection criteria of 'not stressed' volunteers. | n/a | Occupational stress (control/decision latitude, characteristics of job) | Occupational stress, sleep during weekdays, chronic ill health, sick leave, GP visits, accidents, cortisol levels, negative affect, mood, hospital anxiety and depression scale, chronic fatigue | No | No | No | No | racial abuse at work | n/a | n/a | http://www.hse.gov.uk/research/crr_pdf/2000/crr00265.pdf | Access details not available | ||||||||||
15 | What about Youth (WAY) Survey | Cross-sectional | National | 2014 | One-off | 120,000 randomly selected from Department for Education's National Pupil Database (NPD) (England) | Local authority | general health, diet, use of free time, physical activity, smoking, drinking, emotional wellbeing, drugs and bullying | WEMWBS, healthy diet, portions of fruit and veg, eating breakfast, over 8 hours sleep, frequency and intensity of physical activity, smoking, drinking, alcohol related behavioural outcomes, drug taking, life satisfaction, happiness, anxiety | 5 main ethnic groups with multiple options under each including 'other' categories for each | No | born in the UK | No | religion | Department for Education (National Pupil database), Linkage with census possible using LAs | n/a | https://beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=7894#!/documentation, https://files.digital.nhs.uk/publicationimport/pub19xxx/pub19244/what-about-youth-eng-2014-rep.pdf | Available from the UK Data service https://beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=7894#!/access | ||||||||||
16 | The Active People Survey | Cross-sectional | National | 2005/6 to 2013/14 | Yearly | Random sample using random number dialling. Over 360,000 in the first survey year. Approx 200,000 in following waves (at least 1,000 per LA in first year of study and at least 500 per LA in subsequent years) | Local authority | club membership, receiving coaching, level of sport involvement, level of satisfaction with country level sport provision, volunteering, general health, income | participation in sport types, intensity and frequency of sport | 5 main groups with option for 'other' (standard ONS categories) | No | none | No | religion, language spoken | Not clear- linkage with census may be possible using LAs | n/a | Documentation for each year listed separately on UK data service website e.g http://doc.ukdataservice.ac.uk/doc/8038/mrdoc/pdf/8038_aps_9_technical_report.pdf | Years available individually from UK Data Service | ||||||||||
17 | The Active Lives Survey (replaces the above) | Cross-sectional | National | 2015/16 to present | Yearly | Random sampling of housholds using random probability sampling of postcodes (PAF) aiming for 500 survey returns per LA (198,250 total in year 1) | Local authority | Sport and physical activity, social and cultural activities, volunteering, diet, height and weight, socio-economic variables including NS-SEC | ONS well-being measures, trust in community | 7 categories including 'other' | No | none | No | religion | Not clear - linkage with census may be possible using LAs | n/a | https://beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=8223#!/documentation | Years available individually from the UK Data Service | ||||||||||
18 | Annual Population Survey | Cross-sectional houshold survey | National | 2004 to present | Yearly (surveys quarterly) | An annually representative sample of 80,000 by combining waves 1 and 5 (Cohorts interviewed at 5 successive quarters with 12,000 housholds per cohort) | Local authority | housing, education, employment and unemployment, time lived at address, family member and relationship details, qualifications | smoking, general health, accidents, health problems | 5 main ethnic groups with multiple options under each including 'other' categories for each | No | nationality, country of birth, year arrived in country | No | religion | Labour Force Survey (it uses data combined from 2 waves of the main Labour Force Survey (LFS), collected on a local sample boost) | Available from: http://webarchive.nationalarchives.gov.uk/20160105231515/http://www.ons.gov.uk/ons/guide-method/method-quality/specific/labour-market/labour-market-statistics/index.html (Volume 6: APS user guide), http://doc.ukdataservice.ac.uk/doc/7091/mrdoc/pdf/7091userguide.pdf | APS micro data available to download years spearately through UK Data Service (limited number of variables available through this), greater range available via special license | |||||||||||
19 | Scottish Health Survey (SHeS) | Cross-sectional | National | 1995 to present | 1995, 1998, 2003, yearly subsequently | PAF random sampling of 312 postal sectors, 1995 total 7,932 respondents | Postcode sectors, household | physical activity, eating habits, drinking, education, dental health, height and weight, biological measures (e.g. saliva, blood pressure, anxiety, depression, urine), perscribed medicines, contracteption, care | CVD, smoking, long standing illness, health limits daily activities, respiratory questions | 5 main ethnic groups with multiple options under each including 'other' categories for each | No | Pleace of birth | No | religion | Scottish Health Records | 1995: https://www.sehd.scot.nhs.uk/publications/sh5/sh51-01.htm#b3, 1998: https://www.sehd.scot.nhs.uk/scottishhealthsurvey/, info for subsequent years available from the UK Data Service: https://beta.ukdataservice.ac.uk/datacatalogue/series/series?id=2000047 | Hamer, M., Stamatakis, E. and Steptoe, A., 2009. Dose-response relationship between physical activity and mental health: the Scottish Health Survey. British journal of sports medicine, 43(14), pp.1111-1114. | Available from the UK Data Service | ||||||||||
20 | Clinical Practice Research Datalink (CPRD) | Longitudinal | National | information from 1998 onwards for at least 10 million | Ongoing | 10 million currently registered active patients with at least 20 years of follow-up for 25% of the patients. | GP practices (674 in total) | Demographic data Diagnoses and symptoms Drug exposures Vaccination history Laboratory tests Referrals to hospital and specialist care | type of consultation, medical history including symptoms and diagnosis, referrals, immunisation, tests performed and results, prescriptions | Ethnicity in the CPRD is coded using the Read system of alphanumeric codes. | No | none | No | No | Hospital Episode Statistics (HES) Admitted Patient Care (HES APC) data, HES Outpatient (HES OP) data, HES Accident and Emergency (HES A&E) data, HES Diagnostic Imaging Dataset (HES DID), Death registration data from the Office for National Statistics (ONS), Cancer data from Public Health England (PHE) (Cancer Registration, Systemic Anti-Cancer Therapy (SACT) Dataset, National Radiotherapy Dataset (RTDS), Cancer Patient Experience Survey (CPES)), Mental Health Dataset (MHDS), Small area level data (index of Multiple Deprivation (IMD) Townsend Deprivation Index, Carstairs Index, Rural-Urban Classification) | see https://cprd.com/linked-data | https://cprd.com/sites/default/files/CPRD%20Aurum%20Data%20Specification_1.pdf, https://www.cprd.com/sites/default/files/CPRD%20GOLD%20Full%20Data%20Specification%20v2.0.pdf, https://cprd.com/Data | Mathur, R., Bhaskaran, K., Chaturvedi, N., Leon, D.A., vanStaa, T., Grundy, E. and Smeeth, L., 2013. Completeness and usability of ethnicity data in UK-based primary care and hospital databases. Journal of public health, 36(4), pp.684-692. | Independent Scientific Advisory Committee (ISAC) approval required (application form available from: https://cprd.com/research-applications) | |||||||||
21 | British Social Attitudes Survey | Cross-setional survey | National | 1983 to present (excluding 1988 & 1992 - see British Election Study) | Annually | 3,000 people annually | Postcode sectors, household | Political party identification, education, transport, employment, retiremnet and pension, newspaper readership, views on NHS, housing (some additional qustions asked at only one year of the study dependiong on funders interests- see individual year data set documentation) | long standing mental health or physical condition, impact of health on daily life, | 5 options, multiple options available under 'black' and 'asian' including 'other', other options are 'white of any origin: write in', 'mixed of any origin' and 'other: wirite in' | No | nationality | No | No | n/a | n/a | Separate documentation each year. All can be found through UK Data Service website. 2016 example: http://doc.ukdataservice.ac.uk/doc/8252/mrdoc/pdf/8252_bsa_2016_documentation.pdf | MacInnes, J., 2005. Work–life balance and the demand for reduction in working hours: Evidence from the British Social Attitudes Survey 2002. British Journal of Industrial Relations, 43(2), pp.273-295. | Available from the UK Data Service: https://beta.ukdataservice.ac.uk/datacatalogue/series/series?id=200006 | |||||||||
22 | Citizenship Survey (formerly Home Office Citizenship Survey/ HOCS up to and including 2005) | Cross-sectional survey | National | 2001-2011 | Every two years | approximately 15,000 | Postcode sectors, household | Social networks - friends and family support, Feelings about neighbourhood and local community, Collective efficacy, Trust in institutions, Perceptions of racial and religious prejudice, Participation in local and national politics, Involvement in community, Formal and informal volunteering, Charitable giving, Employer supported volunteering, Discrimination in the workplace, Rights and responsibilities of citizens, Social capital | smoking, alcohol, drugs, diet, vaccination, visits to the doctor, sexual activity and STIs, general health | 5 main ethnic groups with multiple options under each including 'other' categories for each | Yes, boost of 5,000 | Country of birth, country of mother and father's birth | No | Discrimination becuase of race, proportion of friends from the same ethnic group, residents respect ethnic differences between people, fear of physical attck or harassment due to ethnicity or religion, reason for harassment (ethnicity, religion, skin colour), frequency of mixing with others from different ethnicities and religions, opinion of ethnic and religious mixing in partipcipants area and in Britain as a whole, importance of ethnic/racial background to sense of identity, language spoken at home, level of spoken English and English literacy | n/a | n/a | Additional information http://webarchive.nationalarchives.gov.uk/20120919133219/http://www.communities.gov.uk/communities/research/citizenshipsurvey/, Separate documentation each year. All can be found through UK Data Service website. 2010/11 example: http://doc.ukdataservice.ac.uk/doc/7111/mrdoc/pdf/7111_citizenship_2010-11_questionnaire_for_q2_final_clean.pdf | Available from the UK Data Service or access online through NESSTAR: https://beta.ukdataservice.ac.uk/datacatalogue/series/series?id=200007#!/abstract | ||||||||||
23 | Millenium Cohort Study | Longitudinal cohort study | National | 2001, 2004, 2006, 2008, 2012, 2015, 2018 | Varies, see 'years running' | 18,818 initial sample | Local authority | parenting; childcare; schooling and education; daily activities and behaviour; cognitive development; child and parent mental and physical health; employment and education; income and poverty; housing, neighbourhood and residential mobility; and social capital, ethnicity and identity, NS-SEC | Strengths and Difficulties Questionnaire (SDQ), vaccinations, smoking, longstandig illness, hospital admissions, accidents and injuries, atopic conditions, communicable disease, behavioural problems, speech and eyesight, mental health, alcohol, happiness, drugs, life satisfaction | 11 category census classification | Oversampling of high ethnic minority areas | none | No | Languages spoken at home, religion | NPD National Pupil Database | n/a | Available separately for each sweep from https://cls.ucl.ac.uk/cls-studies/millennium-cohort-study/ and from: https://beta.ukdataservice.ac.uk/datacatalogue/series/series?id=2000031 | Kelly, Y., Panico, L., Bartley, M., Marmot, M., Nazroo, J. and Sacker, A., 2008. Why does birthweight vary among ethnic groups in the UK? Findings from the Millennium Cohort Study. Journal of Public Health, 31(1), pp.131-137., Kelly, Y., Sacker, A., Schoon, I. and Nazroo, J., 2006. Ethnic differences in achievement of developmental milestones by 9 months of age: The Millennium Cohort Study. Developmental medicine and child neurology, 48(10), pp.825-830. | Available via UK Data Service: https://beta.ukdataservice.ac.uk/datacatalogue/series/series?id=2000031 | |||||||||
24 | National Dental Epidemiology Programme (NDEP) (includes 3 year olds study, 5 year olds study, 12 year olds study and adults study) | cross-sectional | National | varies depending on survey, earliest 2008 | varies depending on survey | Minimum 250 children er lower tier local authority | Local authority | Dental health (prevalence and severity of dental caries among 5, 3 and 12- year-old children within each lower-tier local authority, information about oral health and service use from a representative sample of adults) | Dental caries, plaque visibility, condition of teeth, teeth present, absent teeth, sealed surfaces, abscess, treatment needed (adults: the number of natural teeth present, along with their caries status, the presence of bleeding on probing, an assessment of the number of posterior segments with one or more tooth-totooth or tooth-to-replacement contacts, presence and condition of dentures, the need for treatment and degree of urgency, the PUFA index) | 2001 national population census ethnicity categories | n/a | n/a | n/a | n/a | n/a | n/a | All dataset information available from: http://www.nwph.net/dentalhealth/ | Local authority personnel can apply to become a super-user and access the raw, anonymised data for specific purposes via this process: 1. Local authority requestor to send an email to DentalPHIntelligence@phe.gov.uk providing the following information: Name of individual to be allocated as ‘super user’, Local Authority, Contact details 2. The nominated ‘Super User’ will be contacted by a member of the DPHEP who will send a data sharing agreement to be sent over for signing. 3. Once the signed agreement has been received the super user will be sent their (anonymised) data along with a set of analysis guidance notes. | ||||||||||
25 | ALSPAC (Avon Longitudinal Study of Parents and Children) also known as 'Children of the 90s' | Longitudinal birth cohort study | Local | Mother survey 1990-2012, partner survey 1990-2009, child survey 1998-present | High frequency of questionnaires but variable depending on stage in lifecourse (http://www.bristol.ac.uk/media-library/sites/alspac/documents/questionnaires/questionnaire-topic-guide.pdf) | starting sample of 14,541 pregnancies | n/a | Designed to determine ways in which the individual’s genotype combines with environmental pressures to influence health and development. Many lifestyle related questions including internet use, leisure time, travelling, job stress, domestic violence, qualifications, specific focus on partner as well as mother | Varies depending on mother, child or partner questionnaire and stage in lifecourse. Examples: current health and symtoms, mode of birth, WEMWBS, depression, anxiety, weight, fatigue, sleep, dental variables, diet, exercise, reproductive history, cognitive ability, smoking, alcohol many more (see http://www.bristol.ac.uk/alspac/researchers/our-data/questionnaires/) | White black/Caribbean black/African black/other (please describe below) Indian Pakistani Bangladeshi Chinese Any other ethnic group (please describe) | no | no | no | Discrimination because of ethnicity, languages used at home, main language used at home for child, number of pupils in school for whom English is not a first language, main language spoken by mother | Can be linked to routine data through PEARL (Project to Enhance Aetiological research through Record Linkage) including health and social administrative records, small area health statistics unit, CLOSER, NHS Primary (GP) and Secondary Care (Hospital) records, geo-spatial linkages, national pupil database, ONS cancer registry and more. Bespoke links can also be applied for (contact alspac-linkage@bristol.ac.uk.) | See http://www.bristol.ac.uk/alspac/researchers/our-data/linkage/ | http://www.bristol.ac.uk/alspac/ | Proposals to be sent to ALSPAC executive committee http://www.bristol.ac.uk/alspac/researchers/access/ | ||||||||||
26 | SHELS (Scottish Health and Ethnicity Linkage Study) | Linkage study | national | 2003-2017 | 4 phases. 1 2003-2006, 2 2007-2010, 3 2010-2013, 4 2013-16 ended 2017 | 4.65 million people (91% of Scottish population) | n/a | SES, household variables, age, sex, marital status, index of multiple deprivation, car ownership | self rated health, respiratory diseases (e.g. asthma), gastrointestinal diseases (e.g. appendicitis, alcoholic related diseases), sample of data from General Practices to obtain information about risk factors for heart disease (e.g. smoking), all deaths across Scotland (2001 to 2013), all hospital admissions (including how long we stay in hospital and information about re-admissions), infectious and parasitic diseases (including HIV and hepatitis C and B), accidents and poisonings, uptake of bowel cancer screening | Census ethnicity codes | n/a | Country of birth | no | Religion | Linked to health and death datasets, linked by Community Health Index (CHI), datasets linked: General hospital admissions • Mental health admissions • Death records • Cancer registrations • Maternal health records • Breast and bowel screening records • Primary care records (small sample) | See website for details | https://www.ed.ac.uk/usher/scottish-health-ethnicity-linkage/what-is-shels | Bansal, N., Fischbacher, C.M., Bhopal, R.S., Brown, H., Steiner, M.F., Capewell, S. and Scottish Health and Ethnicity Linkage Study, 2013. Myocardial infarction incidence and survival by ethnic group: Scottish Health and Ethnicity Linkage retrospective cohort study. BMJ open, 3(9), p.e003415. | Method of applying for access not clear | |||||||||
27 | DASH (Determinants of Adolescent Social wellbeing and Health) | Cohort study | Local | 2003-2013 | 2003 and followed up at 2005/06, 2010-13 and 2012/13. | Initial sample of 6,500 | 10 inner london boroughs, | SDQ, friends who blong to other ethnic groups, religion, sports, breakfast, portions of fruit and vegetables, food frequency, opinion on weight and body, family setting, family activities, opinion on parets, frequency of seeing extended family, household and individual material possesions, opinion on local area, abuse because of gender, race, physical attributes, country of origin, number of friends, feelings about the future | Height, Weight, Body fat, Blood Pressure, Waist, hip and arm circumferences Stage of puberty, lung function, Salivary cotinine , bloods, physical activity, psychological well-being | 4 main ethnic groups with multiple options under each including 'other' categories for each and a final stand alone 'other' category | n/a | country born in, country parents born in, country grandparemts born in, length of time lived in UK | no | languages spoken in home, who participant mainly speaks English with | n/a | n/a | http://dash.sphsu.mrc.ac.uk/ | Harding, S., Read, U.M., Molaodi, O.R., Cassidy, A., Maynard, M.J., Lenguerrand, E., Astell-Burt, T., Teyhan, A., Whitrow, M. and Enayat, Z.E., 2015. The Determinants of young Adult Social well-being and Health (DASH) study: diversity, psychosocial determinants and health. Social psychiatry and psychiatric epidemiology, 50(8), pp.1173-1188. | access via proposal form: http://dash.sphsu.mrc.ac.uk/Data-sharing.html | |||||||||
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