Iqbal, Gulnaz, Johnson, Mark, 1948 Mar. 16-, Szczepura, Ala, Wilson, Sue, Gumber, Anil and Dunn, Janet A.. (2012) UK ethnicity data collection for healthcare statistics : the South Asian perspective. BMC Public Health, Vol.12 (No.1). p. 243. ISSN 1471-2458

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Abstract

Background Ethnicity data collection has been proven to be important in health care but despite government initiatives remains incomplete and mostly un-validated in the UK. Accurate self-reported ethnicity data would enable experts to assess inequalities in health and access to services and help to ensure resources are targeted appropriately. The aim of this paper is to explore the reasons for the observed gap in ethnicity data by examining the perceptions and experiences of healthy South Asian volunteers. South Asians are the largest ethnic minority group accounting for 50% of all ethnic minorities in the UK 2001 census. Methods Five focus groups, conducted by trained facilitators in the native language of each group, recruited 36 South Asian volunteers from local community centres and places of worship. The topic guide focused on five key areas:1) general opinions on the collection of ethnicity, 2) experiences of providing ethnicity information, 3) categories used in practice, 4) opinions of other indicators of ethnicity e.g. language, religion and culture and 5) views on how should this information be collected. The translated transcripts were analysed using a qualitative thematic approach. Results The findings of this Cancer Research UK commissioned study revealed that participants felt that accurate recording of ethnicity data was important in healthcare with several stating the increased prevalence of certain diseases in minority ethnic groups as an appropriate justification to improve this data. The overwhelming majority raised no objections to providing this data when the purpose of data collection is fully explained. Conclusions This study confirmed that the collection of patients' ethnicity data is deemed important by potential patients but there remains uncertainty and unease as to how the data may be used. A common theme running through the focus groups was the willingness to provide these data, strongly accompanied by a desire to have more information with regard to its use.

Item Type:	Journal Article
Subjects:	R Medicine > RA Public aspects of medicine
Divisions:	Faculty of Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH):	Minorities -- Medical care -- Statistics, South Asians -- Medical care -- Great Britain, Medical statistics
Journal or Publication Title:	BMC Public Health
Publisher:	Bio Med Central
ISSN:	1471-2458
Date:	2012
Volume:	Vol.12
Number:	No.1
Page Range:	p. 243
Identification Number:	10.1186/1471-2458-12-243
Status:	Peer Reviewed
Publication Status:	Published
Access rights to Published version:	Open Access
Funder:	Cancer Research UK (CRUK), Advantage West Midlands (AWM), Birmingham Science City
References:	1. National Cancer Intelligence Network: Cancer incidence and survival by major ethnic group, England, 2002-2006. Book Cancer incidence and survival by major ethnic group, England, 2002-2006 (Editor ed.). City 2009. 2. Jack RH, Linklater KM, Hofman D, Fitzpatrick J, Moller H: Ethnicity coding in a regional cancer registry and in Hospital Episode Statistics. BMC Public Health 2006, 6:8. 3. Chinegwundoh F, Enver M, Lee A, Nargund V, Oliver T, Ben-Shlomo Y: Risk and presenting features of prostate cancer amongst African-Caribbean, South Asian and European men in North-east London. BJU International 2006, 98:1216-1220. 4. Aspinall PJ, Jacobson B: Ethnic disparities in health and health care: A focused review of the evidence and selected examples of good practice. Book Ethnic disparities in health and health care: A focused review of the evidence and selected examples of good practice (Editor ed.^eds.). City 2004. 5. Bowen R, Duffy S, Ryan D, Hart I, Jones J: Early onset of breast cancer in a group of British black women. British Journal of Cancer 2008, 98:277-281. 6. The Information Centre: Health survey of England 2004, Health of ethnic minorities. Book Health survey of England 2004, Health of ethnic minorities (Editor ed.^eds.). City 2006. 7. Jack RH, Davies EA, Moller H: Lung cancer incidence and survival in different ethnic groups in South East England. British Journal of Cancer 2011, 105:1049-1053. 8. Jack RH, Davies EA, Moller H: Prostate cancer incidence, stage at diagnosis, treatment and survival in ethnic groups in South-East England. BJU International 2010, 105:1226-1230. 9. Jack RH, Davies EA, Moller H: Breast cancer incidence, stage, treatment and survival in ethnic groups in South East England. British Journal of Cancer 2009, 100:545-550. 10. Jack RH, Davies EA, Moller H: Testis and prostate cancer incidence in ethnic groups in South East England. Int J Androl 2007, 30:215-220. 11. Day M, Poole J, Bennett JA, Peake MD: Changes in lung cancer incidence in South Asians in Leicester, 1990-2005. J Public Health 2010, 32:230-235. 12. Farooq S, Coleman MP: Breast cancer survival in South Asian women in England and Wales. Journal of Epidemiology and Community Health 2005, 59:402-406. 13. Platz EA, Giovannucci E: Prostate cancer. In Cancer epidemiology and preventio.. 3 edition. Edited by: Schottenfeld D, Fraumeni JF Jr. New York: Oxford University Press; 2006:. 14. UK Census 2001. [http://www.statistics.gov.uk/census2001/census2001.asp]. 15. How good is HES ethnicity coding and where do the problems lie?. [http://www.hesonline.nhs.uk]. 16. HES online: How good is HES ethnic coding and where do the problems lie? Book How good is HES ethnic coding and where do the problems lie? (Editor ed.^eds.). City 2011. 17. Department of Health: A practical guide to ethnic monitoring in the NHS and social care. Book A practical guide to ethnic monitoring in the NHS and social care (Editor ed.^eds.). City 2005. 18. Home Office: Equality Act 2010. Book Equality Act 2010 (Editor ed.^eds.). City 2010. 19. Baker DW, Cameron KA, Feinglass J, Georgas P, Foster S, Pierce D, Thompson JA, Hasnain-Wynia R: Patients’ attitudes toward health care providers collecting information about their race and ethnicity. J Gen Intern Med 2005, 20:895-900. 20. Pringle M, Rothera I: Practicality of recording patient ethnicity in general practice: Descriptive intervention study and attitude survey. British Medical Journal 1996, 312:1080-1082. 21. Information Services Division Scotland: Patient profiling pilot project. Book Patient profiling pilot project (Editor ed.^eds.). City 2010. 22. Iqbal G, Gumber A, Johnson M, Szczepura A, Wilson S, Dunn J: Improving ethnicity data collection for health statistics. Diversity in Health and Care 2009, 6. 23. Hasnain-Wynia R, Pierce D, Pittman M: Who, when, and how: The current state of race, ethnicity, and primary language data collection in hospitals. Book Who, when, and how: The current state of race, ethnicity, and primary language data collection in hospitals (Editor ed.^eds.) City: Health Research and Educational Trust and The Commonwealth Fund; 2004. 24. Regenstein M, Sickler D: Race, ethnicity, and language of patients. Hospital practices regarding collection of information to address disparities in health care. Book Race, ethnicity, and language of patients. Hospital practices regarding collection of information to address disparities in health care (Editor ed.^eds.) City: The Robert Wood Johnson Foundation and National Public Health and Hospital Institute; 2006. 25. Table 6. Resident Population by Sex, Race, and Hispanic Origin Status. [http://www.census.gov/compendia/statab/2012/tables/12s0006.pdf]. 26. Baker DW, Hasnain-Wynia R, Kandula NR, Thompson JA, Brown ER: Attitudes toward health care providers, collecting information about patients’ race, ethnicity, and language. Med Care 2007, 45:1034-1042. 27. Olatokunbo S, Bhopal R: Can we implement ethnic monitoring in primary health care and use the data? A feasibility study and staff attitudes in North East England. Public Health Medicine 2000, 2:106-108. 28. Hasnain-Wynia R, Taylor-Clark K, Anise A: Collecting Race, Ethnicity, and Language Data to Identify and Reduce Health Disparities: Perceptions of Health Plan Enrollees. Med Care Res Rev 2011, 68:367-381. 29. Raleigh V: Collection of data on ethnic origin in England. British Medical Journal 2008, 337:a1107, doi: 10.1136/bmj.a1107. 30. Summary Care Records. [http://www.nhscarerecords.nhs.uk/index.html]. 31. Wild SH, Fischbacher C, Brock A, Griffiths C, Bhopal R: Mortality from all causes and circulatory disease by country of birth in England and Wales 2001-2003. J Public Health 2007, 29:191-198. 32. Wild SH, Fischbacher CM, Brock A, Griffiths C, Bhopal R: Mortality from all cancers and lung, colorectal, breast and prostate cancer by country of birth in England and Wales, 2001-2003. British Journal of Cancer 2006, 94:1079-1085. 33. Cummins C, Winter H, Cheng KK, Maric R, Silcocks P, Varghese C: An assessment of the Nam Pehchan computer program for the identification of names of south Asian ethnic origin. J Public Health Med 1999, 21:401-406. 34. Nanchahal K, Mangtani P, Alston M, Silva ID: Development and validation of a computerized South Asian Names and Group Recognition Algorithm (SANGRA) for use in British health-related studies. J Public Health Med 2001, 23:278-285. 35. Ali R, Barnes I, Kan SW, Beral V: Cancer incidence in British Indians and British whites in Leicester, 2001-2006. British Journal of Cancer 2010, 103:143-148. 36. Fischbacher C, Bhopal R, Povey C, Steiner M, Chalmers J, Mueller G, Jamieson J, Knowles D: Record linked retrospective cohort study of 4.6 million people exploring ethnic variations in disease: myocardial infarction in South Asians. BMC Public Health 2007, 7:142, doi: 10.1186/ 1471-2458-7-142. 37. Downing A, West RM, Gilthorpe MS, Lawrence G, Forman D: Using routinely collected health data to investigate the association between ethnicity and breast cancer incidence and survival: what is the impact of missing data and multiple ethnicities? Ethn Health 2011, 16:201-212. 38. Ryan R, Vernon S, Lawrence G, Wilson S: Use of name recognition software, census data and multiple imputation to predict missing data on ethnicity: application to cancer registry records. BMC Medical Informatics and Decision Making 2012, 12, Article number: Provisional PDF. doi: 10.1186/1472-6947-12-3.
URI:	http://wrap.warwick.ac.uk/id/eprint/45608

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