Health Inequalities in Breast Cancer Screening:

1. Health Inequalities in Breast Cancer Screening: How big is the problem nationally and what are the key challenges? Professor Ala Szczepura Warwick Medical School, UK Centre for Evidence in Ethnicity, Health and Diversity (CEEHD) http://ethnic-health.org.uk Addressing Health Inequalities in Breast Cancer Screening- A Partnership Approach Friday, 1st October 2010 Manchester

2. The Legal Context • Race Relations Amendment Act 2000 This lays a statutory duty on all agencies to:  have due regard to the need to eliminate unlawful discrimination, and  make explicit consideration of the implications for racial equality of every action and policy • Equality Act 2010 The new Equality Bill received Royal Assent on 8th April 2010. This adds a statutory duty on all agencies to:  consider, in all strategic decisions they make, how they will tackle the disadvantage some people face because of socio-economic status. Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

3. UK population by ethnic group: Census data Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

4. Composition of English Population:12.5% ‘MinorityEthnic’ – Some cities ~50%(2001 Census data)

5. Where South Asian immigrants come from Kashmir/Mirpur Punjab Gujerat Sylhet And ‘Overseas’ Indians from East Africa and Caribbean Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

6. The Reality: Equity & ethnicity • There are significant variations in Health Status • There are significant variations in Access to health services • There are significant variations in Experience of receiving care • There is significant variation in the Evidence Base • There is significant variation in the Knowledge Base Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

7. Clinical need.... • South Asians • 2 x more likely to die prematurely from coronary heart disease • 6 x more likely to have diabetes • African Caribbean males • 6 x more likely to be sectioned under the mental health act for compulsory treatment • Black females aged 65 and over • are at a higher risk of cervical cancer than white females of the same age Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

8. Defining ‘ethnic minorities’: Language - least threatening for front-line staff. Relates directly to language support needs of client/ patient. Religion - can play a part in caring for people in distress and also type of service provision e.g. dietary Birthplace - poor indicator of cultural or ‘ethnic’ origin; over half the ‘ethnic minority’ population is born in UK Nationality - not to be confused with ethnic origin “The trouble with using nationality, birthplace, ethnic origin or language spoken as indicators of ethnic categories is that this implicitly assumes that such criteria all refer to the same clear-cut entities” Vermeulen 1997 Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

9. The principal components of ‘Ethnicity’ Geography Ancestry 'Race' Genetics Migration Identity Traditions Religion Family Language Class Gender Culture Diet Location Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

10. Learning from UK cancer screening programmes (UK Centre for Evidence in Ethnicity, Health & Diversity – CEEHD) Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

11. CEEHD programme of work on equity & population cancer screening • Evaluation of uptake of bowel cancer screening/ diagnosis by ethnic minority groups (Department of Health) • Comparison of bowel round 1 & round 2 uptake by ethnic groups (Director, NHS Cancer Screening Programmes) • Assessment of first & latest round uptake for breast & cervical cancer screening (NHS Cancer Screening Programmes) • Disparities in screening behaviour for common cohort invited for bowel, breast & cervical cancer screening (NHS Cancer Screening Programmes) • Interventionto improve bowel cancer screening uptake for deprived groups (NIH funded project) • Improved collection of data- Cancer Ethnicity (CanEth) data in UK (Cancer Research UK funded Project) • Intervention to improve breast screening uptake with targeted material (planned) Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

12. Key Questions… • How does cancer screening uptake vary according to: • ethnicity of invitees? • age of invitees? • socio-economic status of invitees? • How does individual behaviour of women from different ethnic minority groups compare across cancerscreening programmes? • Can intervention improve uptake?

13. Evidence on equity in breast cancer screening uptake • Round 1 (1989 - 1992) Round 2 (1992 – 1995) Round 5 (2001 – 2004) Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

14. UK Breast Screening Programme: • Breast Cancer (20 years since programme set up) • - Women aged 50-69, 75% screening uptake in 2003/4 Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

15. Breast Screening Uptake by Age Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

16. Breast Bowel Cancer Screening UptakesDifferential Response: Population Level (Round 1 Bowel, Round 5 Breast) Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

17. Breast & Bowel Cancer Screening UptakesDifferential Response: Common Cohort of Women

18. Screening uptake by South Asian population has increased over time Muslim women continue to have a low uptake Uptake continues to decrease more rapidly with increased age in South Asian women Longitudinal analysis identifies a further difference in regularity of screening uptake which cross-sectional analysis hides A large group of South Asian women accept breast screening invitation but not bowel screening Response to first invitation tends to set future response patterns Szczepura AK, Price C L, Gumber A K. Breast and Bowel Cancer Screening Uptake Patterns over 15 Years for UK South Asian Ethnic Minority Populations, Corrected for Differences in Socio-demographic Characteristics. BMC Public Health 2008, 8:346 Price C, Szczepura A, Gumber A, Patnick J. Comparison of breast and bowel cancer screening uptake patterns in a common cohort of South Asian women in England. BMC Health Services Research 2010, 10:103 Breast Cancer Screening Summing Up Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

19. Breast screening intervention: • Women’s behaviour over time and across cancer screening programmes has been compared • A randomised controlled trial is now planned to assess targeted mailing of DVD with personalised GP letter • Study will particularly examine impact on first time invitees and older women from all South Asian groups Further intervention still required to improve breast screening uptake. Social marketing techniques used to produce a DVD targeted at South Asian women to promote breast screening uptake Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

20. Provision ≠ Equity Equity requires more than provision of a service. Provision alone cannot ensure equal access for all individuals regardless of their religion, culture or ethnic background. • It is essential that health services ensure that individuals: • have equal access via appropriate information • have access to services which are bothrelevant and sensitive to their needs • are able to use the service with ease, and have confidence that they will betreated with respect Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

21. Underpinning influences • Ethnic differences in patterns of disease • Cultural variations in presentation of symptoms of illness • Perceptions of health, body and disease • Cultural and language differences in information presentation • Accessibility of services (time and place) • (Previous experiences of) Encounters with services • Lifestyle, socio-economic status, religion & cultural practices • Alternative treatment options • Racism - direct, personal, indirect or institutional • Attitude, awareness and skill of clinical staff • Language, education and availability of appropriate information Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

22. Access to appropriate information – is not simple • Person-to-Person: Family and Friends • Professional-to-Person: Doctors, Nurses, Allied Health Professionals • Mass Media: Papers, Broadcast, Adverts • Pamphlets and leaflets and posters • Religious and Cultural Centres • Shopping and Recreation (Markets & Festivals) • ‘Social Marketing’ – using community networks and ‘lay referral’ systems Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

23. Dimensions associated with access*: • ‘Newness’ or user ignorance in the community • Language and literacy- cultural and language differences in information presentation • Cultural differences- religion, gender, work patterns, shyness, differential presentation • Staff skills/ training needs- attitudes, racism - direct, personal, indirect or institutional * Szczepura A. Access to healthcare by ethnic minority populations. Postgraduate Medical Journal 2005; 81: 141-147. Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

24. Information on Cancer.... incidence, management, mortality and survival in the UK….. Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

25. CanEth - Cancer Ethnicity Project Cancer Research UK (CRUK) Funded Project A feasibility study to gather robust evidence and identify clear solutions and recommendations to improve the collection of ethnicity data for statistics of cancer incidence, management, mortality and survival in the UK Lead Janet Dunn, Prof Cancer Trials, Warwick Medical School Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)

26. Caneth Conclusions Systematic review • Paucity of literature on ‘methods’ of ethnic data collection • Organisations may have a policy but few provide training • Self assessed ethnicity is better than observer assessment • Official ethnicity categories need to be re-examined and defined better Views of health professionals • Lack of consistency at different levels of organisations • No clear rationale for collection/use of data • Data collected without training or explanation of its use • Not enough resources for ‘research data’ in general, without adding ethnicity Patient focus groups • No objections to providing data in a healthcare setting • Lack of information as to the use of the data • Explanations as to its use would increase willingness • Iqbal G, Gumber A, Johnson MRD, Szczepura A, Wilson S, Dunn JA. Improving ethnicity data collection for health statistics in the UK. Diversity in Health Care (in press) • Iqbal G, Johnson MRD, Szczepura A, Wilson S, Gumber AK, Dunn JA. A study of public and professional perspectives of ethnicity data collection in UK healthcare. BMC Public Health (submitted ) University of Warwick Medical School, UK

27. Reported ‘hot off the press’ in October 2009 Cancer data on ethnicity: National Cancer Action Team (NCAT) had funded joint working by: National Cancer Equality Initiative (NCEI); National Cancer Intelligence Network (NCIN); and Cancer Research UK. National Cancer Data Repository linked together all cancer registrations in England with Hospital Episode Statistics (HES). Linked data, with HES derived ethnicity, had enabled ‘a quantum step forward’ in terms of reporting data on incidence. Significant problems remain: Incomplete linkage with HES Completeness of ethnicity recording within HES Reliability and validity of codes

28. Cancer incidence: the first steps... Data on ethnicity were available for around 75% of cases In general cancer incidence is lower in Asian, Chinese and mixed-race groups than in Whites But … incidence in South Asians is higher than in Whites for liver, mouth (females) and cervix (over 65s) cancers and lower for several other cancers Incidence in Blacks is higher than in Whites for prostate, stomach, liver, myeloma and cervix (over 65s) cancers – and lower for several other cancers

29. The Bottom Linehttp://www.raceforhealth.orgHelen Hally, National Director, Race for Health • In a just society, race inequality is unacceptable • Effecting change requires not just legislation, but engaging the hearts and minds of all • Change is possible. Inequality is inefficient • Well planned investment in addressing inequality can reap financial as well as human rewards • Gaining the trust and respect of all of our citizens will support health gain • Doing it well is as rewarding for staff as for the people we serve Centre for Evidence in Ethnicity, Health & Diversity (CEEHD)