Ethnic and racialised inequalities in cancer services: evidence review

4. Findings

4.1 Cancer Inequalities

4.1.1 Introduction

Sub-chapter 4.1 addresses Research Question 1: ‘What evidence is there about cancer healthcare inequalities and inequities experienced by people from minority ethnic groups, including in access to screening, diagnosis, incidence, treatment, care, experience and outcomes?’ Sub-chapter 4.2 will discuss barriers which contribute to these inequalities.

As discussed earlier, there are gaps in evidence about cancer and ethnicity, partly because of historically low recording of ethnicity in NHS data systems, and partly because published ethnicity data are often aggregated into very broad categories because of small numbers in some groups. This means that detailed data for specific ethnic groups and sub-groups are not always available. This section will report on ethnicity data for Scotland where available, as well as some data for England where no Scotland data are available.

4.1.2 Cancer Diagnosis

4.1.2.1 Cancer Screening

Introduction

In Scotland and the other three UK nations there are three established cancer screening programmes: breast and cervical (females) and colorectal (bowel: males and females). (In England targeted lung cancer screening has started; and Scotland's 2025 Population Health Framework includes a commitment to pilot a lung cancer screening programme in its most deprived areas over the next two years). Cancer screening coverage represents the proportion of people invited to participate in a cancer screening programme who do so. Screening plays an important role in detecting cancer and enabling its early diagnosis. This section will discuss, by ethnicity, data available for Scotland, and cervical screening data for England.

Scotland

Cancer screening coverage data is not routinely published by ethnic group. The Scottish Health and Ethnicity Linkage Study (SHELS) linked routinely collected health data with 2001 Census data including self-reported ethnicity to create a retrospective cohort for 95% of the Scottish population^[44]. This enabled exploration of ethnic and religious variations in disease and uptake of cancer screening in Scotland

A breast screening study with women used the SHELS cohort to compare non-attendance at invitation for the period 2002 – 2008 by ethnic group^[45]. It found that, compared with the non-attendance rate for the White Scottish reference population (23.1%), non-attendance was similar for Other White British and Chinese women, and substantially higher for Pakistani (41.9%), African (37.4%), Other South Asian (35%) and Indian (32.7%) women. The authors commented that this was concerning given that women who attend breast screening at first invitation were more likely to attend for subsequent screens. They noted that the findings suggested potential ethnic inequity in preventable cancer mortality, especially among Pakistani and African women.

A separate breast screening study in the NHS Lothian area of Scotland used Scottish Breast Screening Programme data to explore coverage among Polish women for the combined periods of 2010-11, 2011-12 and 2012-13^[46]. The study found that over the three-year period, Polish women had a considerably lower average uptake of screening (46.7%) compared with the rest of the Lothian female population as a whole (70.7%). A possible limitation of this study is that it did not use self-reported ethnicity data to identify Polish women, but instead a name classification system to assign people to ethnic categories. However, the authors were confident that the women identified as Polish were of Polish ethnicity.

A colorectal screening study also used the SHELS cohort to compare uptake by ethnicity and religion for two rounds of the Scottish Bowel Cancer Screening Programme (2007– 2013) ^[47]. It described its findings as showing “complex patterns of variation” by ethnicity (p.7). For men in the first round, compared with White Scottish men, Other White British and Chinese men had higher uptake. Lower uptake was found in other ethnic groups, particularly among Indian, Pakistani, Bangladeshi and Other South Asian men. The patterns for women were similar. Variation in uptake by religion was also found, with lower rates among Hindu, Muslim and Sikh men compared with the Church of Scotland reference population. There was a similar pattern among women.

For cervical screening, a study of the 2018 cohort in Scotland found that, compared with White Scottish women, uptake was lower among Gypsy/Traveller, White Polish, Other White, Pakistani, Indian, Chinese, Other Asian, and Arab women^[48]. Other White British women had a higher uptake compared with White Scottish women. Women born in the UK or who had lived in the UK for 10 or more years were more likely to attend screening compared with those who had lived in the UK for 5 years or less. A review of inequalities in cervical cancer screening in the UK cited evidence that, in England, key factors associated with lower uptake were non-Caucasian ethnicity and deprivation. There was evidence of poor uptake in women with sub-Saharan African, Indian, Pakistani, Bangladeshi, Caribbean and Chinese backgrounds [49].

4.1.2.2 Cancer Stage at Diagnosis

Introduction

Cancer stage at diagnosis refers to how early or late a cancer has been diagnosed. Stages 1 and 2 are considered earlier diagnosis, Stages 3 and 4 are considered later diagnosis. CRUK emphasises that the earlier the stage at which cancer is diagnosed, the better the chance of survival, with stage of diagnosis having an important impact on treatment options and cancer outcomes. Cancer stage at diagnosis for Scotland is not routinely reported by ethnicity, so England data is discussed below.

England

Data cited by The King's Fund showed mixed evidence from 2012-13 and 2017 about ethnic variation in cancer diagnosis and staging. Subsequent England data for 2021^[50] showed that the percentage of new cancer diagnoses made early (at Stage 1 or 2) was 54.4% for England overall. The percentages were slightly higher (better) for people in the Asian (56.4%) and Black (56.2%) ethnic groups. Percentages for the Mixed, White, Chinese and ‘Other’ ethnic groups were similar to the England average. These percentages should be treated with some caution. They derive from new diagnosis data combined for 18 different cancer sites and findings will depend on the case mix of cancer sites. In addition, for some cancer types, over-diagnosis could vary between ethnic groups; for example, for prostate cancer among Black men, as discussed in a recent CRUK briefing) ^[51].

Specific studies from England discussed below indicate that people from minority ethnic groups are more likely to be diagnosed late with cancer, with variation by cancer site and ethnic group. This variation could be linked to people’s route to diagnosis, including through screening, and could also relate to other barriers which are discussed in Sub-chapter 4.2.

A study in England for the period 2006-2016 analysed NHS data for people diagnosed with cancer at seven specific cancer sites via primary care routes, from the first recorded feature of possible cancer to definitive diagnosis^[52]. It found that Asian and Black people experienced longer diagnostic intervals than White people for six of the seven cancer sites studied. Asian and Black people were also younger at diagnosis and more likely to live in the most deprived areas. The authors commented that, while these differences were relatively modest, they could indicate healthcare shortcomings that disproportionately affect people from minority ethnic groups.

Analysis of data from the 2010 National Cancer Patient Experience Survey (CPES) for England found that patients from all minority ethnic groups reported on (Black, Asian, Mixed, Chinese) were more likely to have visited their GP three or more times before hospital referral compared with the White reference population^[53]. The authors comment that this finding was primarily driven by patients in the middle and older age groups, which might indicate problems with doctor–patient communication. They recommended research to explore how the diagnostic process for these patients could be improved, for example through improving translation services and the availability of culturally appropriate information resources. Potential enablers to address these issues are discussed in Section 4.4.

A study of NHS data for England for the period 2012-2016 explored cancer stage at diagnosis for six specific cancer sites by ethnicity^[54]. It found that, where cancer stage was known, ethnic group was a statistically significant predictor of late-stage diagnosis overall for all six cancer sites, after adjustment for age, year, comorbidity, deprivation and region, with variation by site and ethnic group. For example, compared with the White British group, late diagnosis was more likely among Caribbean, African and Asian women with breast or ovarian cancer; Caribbean and African women with uterine or colon cancer; Caribbean women with non-small cell lung cancer; and Caribbean men with colon cancer. However, Caribbean and African men with prostate cancer were less likely to be diagnosed at a late stage compared with White British men. Some of these examples could reflect intersectional inequalities, with ethnicity and gender compounding each other.

4.1.3 Cancer Incidence

Introduction

Cancer incidence is the number and rate of new cancer diagnoses in the population. This section will discuss, by ethnicity, incidence data available for Scotland and England.

Scotland

Cancer incidence data is not routinely reported by ethnicity. The SHELS population cohort was used to calculate directly age standardised rates and ratios by sex and ethnic group for newly-diagnosed cancers for the period 2001-2008^[55]. The findings showed that in men and women, the White Scottish reference population had the highest rates and ratios of cancer, except for men in the Any Mixed Background group. Rates were particularly low among Indian men and women, Pakistani men and women, and Chinese men. This finding broadly applied to All Cancers combined, and to some of the common cancers (lung and colorectal cancer among men and women, and breast cancer among women). Prostate cancer among men was higher for Other White British, and for the African origin population though the difference was not statistically significant. The study noted the higher incidence of cancer overall in Scotland compared with England and Wales; and the challenge of maintaining the low rates in the non-White populations while reducing them in White populations.

A separate analysis of cervical cancer incidence data from the Scottish Cancer Registry for the period 2008-2017 found that incidence was much higher among the White population compared with all other ethnic groupings^[56]. While this finding is broadly consistent with the evidence above, a limitation is that the study did not use self-reported ethnicity data, but a name classification system to assign people to ethnic categories.

England

A key study calculated age-standardised cancer incidence rates in England for the period 2013–2017 among the following broad ethnic groups: White, Asian, Black, Mixed/Multiple and Other. It found that, with some exceptions, incidence rates for All Cancers and for most cancer sites and ethnic group and sex combinations were lower in non-White minority ethnic groups compared with the corresponding White group^[57]. An exception was Black men, with higher All Cancers rates compared with White men, driven by a much higher prostate cancer incidence rate among Black men. The study noted that in the England population overall, cancer incidence is associated with socioeconomic deprivation, and that there is a high correlation between deprivation and non-White minority ethnicity. However, this correlation generally did not translate to higher risk factor prevalence in these minority groups. The authors discussed possible reasons for lower incidence rates among minority ethnic groups, although their study did not specifically explore the role of these factors. These included lower rates of cancer risk factors, such as smoking, excess body weight and diet, among non-White minority ethnic groups. They discussed the possible impact of the ‘healthy migrant effect’, whereby some migrants are in better health than the existing population in their new home country. They also cited evidence that, as new migrants from minority ethnic groups become more established, their risk factor prevalence and corresponding cancer incidence rates could become more similar to those in the existing population. They suggested that this, combined with higher rates of deprivation in non-White minority ethnic groups, could compound the association between socioeconomic deprivation and cancer incidence for these groups. There is therefore a complex and intersecting relationship between ethnicity and socioeconomic status, as discussed in Section 3.1.4, which is evident in incidence data.

The influence of intersecting characteristics on multiple and overlapping forms of disadvantage is also relevant in other analysis of incidence within and across minority ethnic groups. For example, the review of inequalities in cancer screening in the UK mentioned above cited evidence that incidence patterns vary widely within ethnic groups and across generations; and that lung and breast cancer incidence rates among British Indians in a diverse English city had increased over time49. In addition, the National Prostate Cancer Audit (NPCA) for England and Wales for the period 2019-2023 found that Black ethnic groups (Black or Black British–African and Black or Black British–Caribbean) had more cases per 1000 men compared with other ethnic groups across all ages and stages at diagnosis ^[58]. However, the drivers of this disparity are unclear, as discussed in a recent CRUK briefing.

4.1.4 Cancer Treatment

Introduction

There is some evidence of ethnic inequalities in cancer treatment and in adherence to follow-up and medication. This review did not identify relevant data for Scotland, so studies undertaken in England are discussed below.

England

CRUK has undertaken analyses for England exploring concordance with National Institute for Health and Care Excellence (NICE) cancer treatment guidelines. Two treatment recommendations were assessed for colon cancer^[59]. For the recommendation relating to adjuvant treatment (chemotherapy within 84 days of surgery), people of Black, Asian, or ‘Other’ ethnicity were less likely to have concordant treatment compared with those of White ethnicity. For the recommendation relating to preoperative chemotherapy, there was no significant relationship between ethnicity and receiving concordant treatment. Five treatment recommendations were assessed for non-small cell lung cancer^[60]. There were no significant relationships between ethnicity and receiving concordant treatment, where ethnicity was known. These findings suggest a relationship between ethnicity and concordance with treatment guidelines for some treatments but not for others.

The evidence about prostate cancer treatment is clearer. A study of men diagnosed with prostate cancer in England during the period 2010-2012 explored the use of radical treatment, which gives good prospects for a cure. It found that Black men were half as likely as White men to receive radical treatment^[61]. There were similar findings in analyses of NPCA data for England and Wales for the periods 2014-2017^[62] and 2019-2023. The analysis for 2019-2023 found that Black men were less likely to receive radical treatment for high-risk/locally advanced disease. These findings show a clearer relationship between ethnicity and radical treatment for prostate cancer.

A study of NPCA data explored inequalities in treatment intensification, recommended by NICE and NHS England, for men diagnosed with metastatic hormone-sensitive prostate cancer in England between 2018 – 2022^[63]. It found that patients from Black ethnic groups were less likely to receive treatment intensification than those from a non-Black ethnic background. Treatment intensification use also decreased with socioeconomic deprivation even after adjusting for comorbidity and frailty. This could suggest an intersection between ethnicity and deprivation, though the study did not explicitly discuss this.

Attendance at follow-up appointments was explored by a study with a cohort of men placed on active surveillance for prostate cancer at a high-volume English hospital in 2005^[64]. It found that African/Afro-Caribbean men had a substantially higher rate of non-attendance at scheduled follow-up visits compared with men whose ethnicity was described as Caucasian / Other. Multivariable regression analysis was used to adjust for age, calendar year and grade at diagnosis, but patient-level socioeconomic data was not available to adjust for deprivation. The study also found a slightly higher risk of disease progression. Although this finding was not statistically significant, the authors highlighted the potential risk of a lower opportunity to detect disease progression in this group. They suggested that a more tailored service addressing the specific needs of African/Afro-Caribbean men might be needed, as well as further research into reasons for non-attendance and longer-term follow-up. Analysis by socioeconomic status would also be informative.

A study of women having treatment for endometrial cancer in England during the period 2011-2017/18 explored the delivery of minimally invasive surgery (MIS), which has lower levels of post-operative complications compared with the traditional open hysterectomy^[65]. It found that MIS rates were lower among Black women compared with White and Asian women, and among women from more deprived socioeconomic groups. Compared with other ethnic groups, Black patients experienced intersecting characteristics of younger age, living mainly in more deprived areas and more likely to have comorbidities, which is a risk factor for MIS. The authors noted as a confounding factor the significantly higher level of comorbidity among women in the lower socioeconomic and Black populations, which could have limited their suitability for MIS. However, the gaps in MIS rates were reduced when patients had surgery at high MIS providers, suggesting that patient location and availability of local facilities were factors in access to surgery. The authors suggested that further research was needed into barriers to access to MIS.

Research undertaken with women treated for breast cancer explored their self-reported adherence to adjuvant endocrine therapy (such as Tamoxifen). A survey of women in England and Wales compared adherence by self-reported ethnicity shown in the following ethnic groupings: White British, White Other, Mixed, Asian, Black and Other^[66]. It reported that, compared with White British women, those from minority ethnic groups were more likely to report non-adherence, after controlling for variables including age and socioeconomic status. The highest rates of non-adherence were reported by women in the Black and Other groups. The study highlighted non-adherence as a potential contributor to ethnic inequalities in cancer outcomes. A separate one-year longitudinal analysis was undertaken with women treated for breast cancer in England who were in their first year of Tamoxifen prescription ^[67]. Women from a minority ethnic group were more likely to report non-adherence. They were also more likely to have negative medication beliefs and to have lower confidence in their ability to take Tamoxifen, highlighting the need for ongoing support. Both studies highlighted the small number of minority ethnic participants, but considered that their findings were relevant to future clinical outcomes. Both studies also discussed possible reasons for non-adherence, including mistrust of healthcare professionals, which is discussed in Section 4.2.2. Other possible reasons included lower perceived need for the medication and lower perceived social support. Both studies recommended further research to understand the reasons for non-adherence, which could inform the development of targeted support.

4.1.5 Cancer Patient Experience

Introduction

Both Scotland and England undertake regular national Cancer Patient Experience Surveys (CPES), which capture self-reported ethnicity. (See Scotland's Cancer Patient Experience Survey and England's Cancer Patient Experience Survey) The samples invited to participate in these surveys are proportionate to the relative population sizes of Scotland and England. The number of responses to the most recent Scottish survey, published in 2024 was around 4,500 people, which was too small for analysis by ethnicity. Higher survey response numbers in England have enabled analysis which has been reported for broad ethnic groups. The most recent England survey, published in 2025, received around 64,000 responses. Analyses of England CPES findings are discussed below, as well as findings from an English General Practice Patient Experience Survey study relevant to variation in experience.

General Practice Patient Experience Survey: England

A study in England explored variation by ethnicity on several patient experience measures in the 2009 English General Practice Patient Survey, derived from over 2 million responses ^[68]. Compared with White British patients, Bangladeshi, Pakistani, Indian and Chinese patients reported more negative experiences, with Black patients experiencing relatively small differences. Reported experience by ethnic group varied between GP practices, suggesting variation in care. The authors discussed potential causes of different experiences between ethnic groups, as follows:

1. Ethnic minority patients are concentrated in poorly performing GP practices.

2. Ethnic minority patients received the same care but report worse experience: because they have higher expectations of care quality, or because survey questions might be understood differently by patients from different ethnic or language groups.

3. Ethnic minority patients receive worse care compared with other patients in the same practice. This could be because of language or other access barriers or discrimination.

Any of these possible causes could be explained by the location of ethnic inequalities in the healthcare system, rather than in the ethnic groups and individuals experiencing them. This study is relevant to the English CPES studies discussed below, some of which refer to these potential causes of ethnic variation in experience, and the policy implications.

Cancer Patient Experience Surveys: England

A study of the 2010 England CPES findings explored variation between ethnic groups in reported experience of involvement in decision-making about cancer treatment ^[69]. It found that, compared with White patients, those from each minority ethnic group reported on (Mixed, Black, South Asian, Chinese, Other) were less likely to report a positive experience. The authors note that these findings are consistent with other studies about patient experience generally and for cancer care specifically. They state that these ethnic inequalities did not in general reflect confounding by differences in age, gender, deprivation or cancer type, and were not explained by clustering of minority ethnic patients in hospitals with below-average patient experience scores.

Analyses of the 2011-12 England CPES findings explored various measures of care experience by ethnicity. One study which explored the overall rating of care reported that people from minority ethnic groups, especially Asian and Chinese patients, had less positive experiences than White patients^[70]. Another study explored a summary measure of variation in care and found that minority ethnic patients consistently reported worse experiences^[71]. A further study which explored information provision and communication found that, compared with the White British group, South Asian (particularly Bangladeshi) and Chinese patients were less satisfied with communication and information provision across the cancer care pathway ^[72]. A study which combined findings from the 2013 and 2014 England surveys explored overall ratings of care and experience of interacting with medical and nursing staff^[73]. For overall care rating, almost all the non-White ethnicities reported worse experience compared with the White British group. After adjustment for age, sex, deprivation and employment, there were still statistically significant differences for several groups including Black African, Black Caribbean, Indian, Pakistani, Chinese and Bangladeshi. For communication measures, compared with the White British group, Black, Asian and Other groups reported poorer experience of understanding, having confidence in and trusting specific groups of healthcare professionals.

Research linking England CPES data for 2009 – 2015 to National Cancer Registry data explored experience of the lung cancer pathway. It also found that people in non-White ethnic groups reported less positive experiences^[74]. The authors suggested that the findings highlight the importance of engaging with minority ethnic communities. ‘Community-based and co-designed interventions’ is a potential enabling theme discussed in Section 4.4.6.

Some of the CPES studies cited above discuss as a possible reason for their findings the ‘same care, worse experience’ hypothesis discussed in the General Practice Patient Experience Survey study cited earlier. However, some of the studies also suggest that healthcare service provision factors could contribute to these inequalities, such as poor access to language and translation services and to culturally appropriate services. Some also suggest the need for further research into these issues. These potential service provision contributors to ethnic inequalities are consistent with evidence discussed in Sub-chapters 4.2 and 4.4 about barriers contributing to inequalities and potential enablers to address them. It is possible that these findings also reflect structural barriers which are discussed in Section 4.3.

4.1.6 Cancer Mortality

Introduction

Cancer mortality is one measure of cancer outcomes. Mortality data for Scotland is not routinely reported by ethnicity. The most recent mortality data available for England by ethnicity is discussed below.

England

The King's Fund describes a “complex picture of ethnic inequalities in mortality in England”. They draw on an Office for National Statistics (ONS) Experimental Statistics publication which reports on inequalities in mortality involving common physical health conditions in England for the period March 2021 – January 2023^[75]. ONS reported that the age-standardised mortality rate for All-Cause mortality (which includes All Cancers) was higher for the White British population than for other ethnic groups. The White British group also had higher mortality rates than most minority ethnic groups for several types of cancers.

Some data for the most common cancers is shown below.

• Breast cancer (women): the White British group had the highest mortality rate. The Mixed and Black Caribbean rates were the next highest. Their differences with the White British group were not statistically significantly different, but these rates were based on small numbers causing wide confidence intervals.
• Prostate cancer (men): the Black Caribbean and Black African groups had the highest mortality rates, followed by White British. However, it is important to note that other evidence suggests that it is unclear whether Black men do experience higher mortality compared with White men, as discussed in the recent CRUK technical briefing.
• Colorectal (Bowel) cancer:
  • Men: White Other, White British and Mixed have the highest rates.
  • Women: White British, Mixed and White Other have the highest rates.
• Lung cancer:
  • Men: Bangladeshi has the highest rate, followed by White Other, Mixed and White British.
  • Women: White British, Mixed and White Other have the highest rates.

A BMJ editorial explored the possible factors contributing to lower overall and cancer mortality among people from minority ethnic groups^[76]. These include factors discussed earlier such as the ‘healthy migrant effect’, described here as healthier people being more likely to migrate to the UK; and lower rates of smoking and alcohol consumption. It noted that this mortality advantage might decrease over time as migrant and second-generation groups are affected by social, environmental and behavioural changes resulting from cultural assimilation. These patterns could lead to changes in cancer incidence and to higher mortality in future.

4.1.7 Summary

This sub-chapter has discussed evidence about ethnic variation in access to cancer screening and diagnosis, and in cancer incidence, treatment, patient experience and mortality outcomes. There is evidence of inequalities experienced by people from minority ethnic groups in relation to screening, diagnosis, treatment and patient experience. Evidence shows that cancer incidence and mortality rates are generally lower among people from minority ethnic groups, though some commentary suggests that these rates could increase in future.

Cancer screening is an important route to early detection and diagnosis of cancer. Evidence from Scotland and England shows that, while there have been some complex patterns of variation, the uptake of breast, cervical and colorectal cancer screening is generally lower among people from minority ethnic groups compared with White reference populations. Low uptake of screening could hinder the early detection of those cancers among people in those ethnic groups.

Data from England about ethnic variation in cancer stage at diagnosis is mixed. While some England data shows a higher proportion of early diagnosis among some minority ethnic groups, these findings will be influenced by the case mix of cancer sites and possibly by over-diagnosis. Other studies in England found that people from some minority ethnic groups are more likely to experience delays in diagnosis via primary care routes; and that some groups are more likely to be diagnosed later, compared with the White or White British reference populations. Delays of this kind might result in people having worse treatment experience and outcomes, with potential adverse implications for their survival and mortality.

There is evidence of ethnic disparities in England in relation to cancer treatment and adherence to medication. Studies found disparities in relation to prostate cancer treatment and follow-up attendance among men, surgery for endometrial cancer among women and female breast cancer patients’ adherence to medication. However, recent evidence on treatment for some types of cancer that specifically considers differences between ethnic groups is lacking. In some cases, people from minority ethnic groups could have experienced barriers which are discussed in Sub-chapter 4.2. It is important to understand the reasons for such disparities as they could have adverse implications for treatment outcomes, and for early identification and prevention of disease recurrence. Further research could inform the development of targeted support for and engagement with these groups.

Cancer Patient Experience Survey findings for England consistently find that people from minority ethnic groups report worse experience of cancer treatment and care, including involvement in decision-making, information provision and communication, and experience of interacting with healthcare staff. One potential explanation for this variation is the ‘same care but report worse experience’ hypothesis. However, several studies acknowledge that healthcare, language and other access barriers or discrimination could contribute to ethnic disparities in experience.

Evidence from both Scotland and England shows that cancer incidence rates have been generally lower across minority ethnic groups compared with the corresponding White reference group. A key study suggested that reasons for this could include lower rates of cancer risk factors, such as smoking, obesity and unhealthy diet, and the ‘healthy migrant effect’, although the study did not specifically explore the role of these factors. However, this study also suggested that cancer incidence among minority ethnic groups could worsen over time if their risk factors and hence cancer incidence converge with those in the wider population, and are compounded by the intersecting socioeconomic disadvantage often experienced by people from minority ethnic groups.

Outcomes data in the form of cancer mortality for England suggests that minority ethnic groups experience lower mortality rates for several types of cancer. There are some specific exceptions, including higher mortality rates for prostate cancer among Black Caribbean and Black African men.

Potential barriers contributing to these cancer inequalities are discussed in Sub-chapter 4.2. Evidence about cancer-related racism and discrimination in the healthcare system, which contribute to negative outcomes and experiences, are discussed in Sub-chapter 4.3.

4.2 Barriers contributing to Inequalities in Access to Cancer Screening, Diagnosis, Treatment, Care and Experience

4.2.1 Introduction

Sub-chapter 4.2 also addresses Research Question 1: ‘What evidence is there about cancer healthcare inequalities and inequities experienced by people from minority ethnic groups, including in access to screening, diagnosis, incidence, treatment, care, experience and outcomes?’ It will discuss the barriers which contribute to cancer inequalities. Findings should be viewed through the lens of the levels of racism framework discussed in Section 3.1.1. While some of these barriers will also be experienced by the wider population, some are more specific to or more commonly experienced by people from minority ethnic groups, with variation between and within those groups. Evidence suggests that these barriers can compound ^[77] or exacerbate each other to produce a worse experience. The majority of evidence reviewed was from England, with some from Scotland and Scandinavia.

4.2.2 Healthcare System Factors - General

Introduction

This section discusses the healthcare system factors which can pose barriers for people from minority ethnic groups. These barriers are experienced when navigating the system, accessing cancer screening, primary care and specialist care; and are evident in experiences of support and communication about treatment and care, and in low confidence and trust in the healthcare system overall.

Difficulties in navigating the healthcare system

People from some minority ethnic groups experienced difficulties in navigating the NHS healthcare system, in some cases because of differences with the system in their country of origin. This was particularly found among women in relation to cancer screening and human papillomavirus vaccination (HPV) services, including those from Eastern Europe ^{[78], [79], [80]} or who were Chinese, South Asian or Black African or Caribbean ^[81]. In some studies, participants reported that they continued to use the health services in their countries of origin or from which they had migrated, or would consider doing so ^{[82], [83]}. For instance, one study mentioned a Bosnian woman whose symptoms had not been taken seriously by her GP and who had returned to Bosnia to receive a cancer diagnosis ^[84]. A study of Black African, Black Caribbean and White British women in the UK diagnosed with symptomatic breast cancer showed that first-generation Black African women with symptoms had been less likely to know where in the healthcare system to go, with some presenting to hospital A&E departments ^[85]. Such evidence demonstrates that some people from minority ethnic groups might experience challenges in knowing when and how to access NHS services, and implies the need for better guidance for new migrants on how to navigate the NHS, which is discussed in the enablers Sub-chapter 4.4.

Difficulties in accessing care

Screening

Issues around the accessibility of breast and cervical screening services, including in rural areas, were found among women from several ethnic groups including Eastern European, South Asian, Chinese, Black African or Caribbean and White Scottish. The need for flexible online appointment booking systems and convenient screening locations was highlighted. A study with people from three South Asian faith communities (Islam, Hinduism and Sikhism) found low awareness of the national colorectal cancer screening programme. This meant that invitations sent from the national programme, rather than from a familiar organisation or person such as a local GP, were likely to be perceived as having come ‘out of the blue’ and would not be responded to ^[86]. In one study, Eastern European women commented that when they did register with a GP, they were not given information about screening. This evidence shows why some people from minority ethnic groups have difficulty accessing cancer screening programmes, and suggests that adjustments to the screening invitation process could help increase uptake.

Primary care

Challenges in navigating the system extends to challenges with accessing primary care and consequent access to services such as screening. Groups for whom this was reported included Black African, Black Caribbean and Eastern European women. Difficulty in registering with a GP practice was found among people from some minority ethnic groups. In some cases, challenges related to structural barriers discussed in section 4.3.2, such as immigration status or housing, in that frequent changes of address meant that people moved in and out of GP catchment areas^[87]. In other cases, people chose to delay GP registration until it was necessitated by illness or pregnancy. Cancer screening is offered mainly via GP registration records, therefore lack of GP registration could result in people not being invited. Waiting times for GP appointments, including in relation to early symptom presentation, were also reported as a barrier for people from some minority ethnic groups. While this barrier was also reported for White British people, the intersection with other barriers such as racism or socioeconomic disadvantage could result in people from minority ethnic groups experiencing this issue as a greater problem^{[88], [89], [90]}. This evidence shows that challenges in, and attitudes towards, registering with primary care can hinder access to cancer screening and early presentation with cancer symptoms.

Specialist care

Beliefs about access to specialist care emerged as a theme that can affect attitudes towards NHS services. Women from several Eastern European countries described how they were used to having direct access to specialist care and found it frustrating that, in the UK, the GP acted as a gatekeeper. They also preferred the delivery of screening and HPV vaccinations by specialist consultants rather than healthcare staff whom they considered more junior. Difficulties in accessing clinical nurse specialists among people from a range of minority ethnic groups diagnosed with cancer were also highlighted ^[91]. This evidence shows that expectations about access to specialist care differ and can have an adverse impact on how people feel about engagement with the wider NHS system.

Post-treatment care

People from various minority ethnic groups experienced poor explanations of the process of discharge from hospital admission or treatment, with lack of clarity and uncertainty about what discharge meant, what happened next, and the role of their GP. For example, a study with African-Caribbean men who had been treated for prostate cancer found concern about the post-discharge lack of continuity of care in general practice. They contrasted this with seeing familiar healthcare staff during cancer treatment; and believed that it could be easier to raise sensitive topics with a familiar GP ^[92]. One study with clients of a cancer advocacy service from African-Caribbean, Irish, Pakistani, Indian, Bangladeshi and Chinese communities found that some people experienced no continuity of care between hospital discharge, home and readmission ^[93]. This evidence shows how inadequate explanation of discharge and poor continuity of care can have an adverse impact on experience of cancer treatment among people from minority ethnic groups. Qualitative studies found dissatisfaction with support after cancer treatment among people from a range of minority ethnic groups including Asian (Pakistani, Indian, Bangladeshi and Chinese), UK African-Caribbean and Irish. Gaps in support included for post-discharge support ^[94], incontinence support and psychological support, signposting to support groups, and support to claim welfare benefits. Such evidence highlights the range of post-discharge support needs which were not met, which again adversely affected cancer patients’ experiences. This links to the earlier discussion about patient experience at Section 4.1.5.

Complaint system

Concerns about hospital complaints and feedback systems and lack of transparency were highlighted by a study with people from several minority ethnic groups. Some participants perceived or feared being treated differently after making a complaint, or worrying about repercussions. These perceptions contributed to poor patient experience during their cancer treatment, and could adversely affect people’s trust and confidence in the healthcare system as discussed next.

Low confidence and trust

Several studies found low confidence and trust in the healthcare system in general among Black African, Black Caribbean, Black British, Mixed-Black, Eastern European and Asian women ^{[95], [96]}. Contributory issues included previous negative experiences of healthcare, including poor quality of contact with their GP prior to their cancer diagnosis (discussed in Section 4.2.3). However, one study with British South Asian and British White patients recruited at a cancer centre in England found consistently high levels of trust among both groups in the doctors at the centre, though trust in GPs was lower in both groups ^[97]. The lack of tailored communication strategies is discussed in Section 4.2.4. General distrust in western healthcare services due to historical mistreatment of Black people and racism is discussed in Section 4.3. Specific situations contributing to distrust included cervical screening and the HPV vaccination programme for children. This evidence shows how various factors contribute to low confidence and trust in the healthcare system, including prior negative experiences of healthcare, poor communication and racism.

4.2.3 Healthcare Staff and Patient Interaction

Introduction

This section explores healthcare staff and patient interactions which can present barriers to people from minority ethnic groups. It draws on evidence about healthcare staff behaviours described by patients, and patient experiences of and perceptions about specific aspects of their interactions.

Healthcare Staff Behaviours

Dismissal of symptoms

Evidence shows that people from a range of minority ethnic groups experienced the dismissal by healthcare staff of their symptoms prior to cancer diagnosis; or dismissal of previous health concerns26. This was reported in studies with Black African, Caribbean, Black British and Mixed-Black women85^,88, South Asian (Gujarati Hindu) women, Polish women and Gypsy/Roma/Traveller people ^[98]. One study with women of Asian (Indian, Pakistani, Bangladeshi, Other Asian) and Black and Mixed Ethnicity referred to this issue as an example of “medical silencing” (p.6), resulting in multiple presentations in primary care before people were referred for tests. Some participants in a study with people from a wide range of ethnic groups thought that this issue had resulted in their misdiagnosis or delayed diagnosis. Dismissal of symptoms can act as a significant barrier to early detection of cancer, with one study noting that diagnosis was an area where structural racism had far-reaching impacts. This issue is also discussed in Sub-chapter 4.3.

Negative behaviours by healthcare staff

Negative behaviours by healthcare staff were described by research participants from several minority ethnic groups including Black African and Black Caribbean women, African-Caribbean men, Black, Asian and Minority Ethnic women ^[99] and South Asian women. They reported negative non‐verbal behaviour; brusque, patronising and insensitive behaviour; and inconsiderate and rude treatment during cancer screening. Participants in one study reported instances of healthcare staff treating them impersonally or lacking empathy and compassion. In some, though not all, cases, the dismissal of symptoms and the negative behaviours were attributed by study participants to racism, as discussed in Section 4.3. Negative behaviours of this kind have an adverse impact on people’s experience of healthcare services and could discourage them from accessing services in future.

Patient Experiences and Perceptions

Some of the patient experiences and perceptions described below were responses to the behaviour of healthcare staff described above. This evidence links to the earlier discussion about patient experience at Section 4.1.5.

Not feeling listened to or able to ask questions

Evidence showed that people from some ethnic groups experienced GPs and hospital staff not always taking their concerns and symptoms seriously and not listening to them effectively. This was found in a review of evidence about Black African and Caribbean women and was reported to reduce their intentions to take up cancer screening. A study with people from a wide range of minority ethnic groups also found that some people felt unable to ask questions. Perceptions of this kind could result in symptoms being missed and delayed diagnosis, as well as poor experience of healthcare.

Feeling disempowered

One qualitative study explored the empowerment of women diagnosed with symptomatic breast cancer. It found that first generation Black African and Black Caribbean women appeared less empowered compared with second generations of those groups and with White British women. The less empowered women experienced dismissive behaviour (see above), were less forthright with healthcare staff, and felt less comfortable questioning their GP. The more empowered women felt comfortable querying GP diagnoses and seeking a second opinion. These findings suggest that women who are less empowered feel less confident to assert themselves in interactions with healthcare staff, with potentially adverse implications for early cancer diagnosis.

Worry about wasting the time of GPs and healthcare staff

Worry about wasting the time of healthcare staff was found in studies with people from some minority ethnic groups. One qualitative study found that, compared with White women and second generation Black African women, first and second generation Black Caribbean women and first generation Black African women seemed most worried about wasting their GP’s time, particularly if they perceived that their GP had previously been dismissive about health issues including breast changes. A survey of people living with cancer found that respondents with minority ethnic backgrounds were more likely than White respondents to worry about wasting NHS time and resources. However, a survey about ethnic differences in barriers to symptomatic presentation found no differences by ethnicity for this issue, although respondents who migrated to the UK as adults were less likely to worry compared with those born in the UK ^[100]. These findings suggest that worry about wasting the time of healthcare staff could present a barrier to early cancer diagnosis among people from some minority ethnic groups, particularly among some older ‘first generation’ migrants.

Poor experience of involvement in decision-making

Poor experiences of receiving information and making decisions about treatment were reported in some studies, with people often unaware that there were choices available to them. This was reported in relation to African-Caribbean men with prostate cancer and to South Asian (Gujarati Hindu) women with breast cancer. It was partly attributed to poor quality engagement with healthcare staff and to poor access to interpretation facilities (see Section 4.2.5). A study with people from a wide range of minority ethnic groups reported examples of people feeling “forced” into decisions about treatment” (p. 54). Poor experiences of this kind could mean that people are not well-placed to make informed decisions about their care.

Low confidence to discuss symptoms with healthcare staff

Population surveys using the CRUK Cancer Awareness Measure provide evidence of varying levels of confidence to discuss symptoms across different ethnic groups. Two surveys found that South Asian women (Bangladeshi, Indian, Pakistani) were more likely than White British women to lack confidence to talk to their doctor about cancer symptoms^[101]. A survey using the same awareness measure found that, compared with White British women, Caribbean, African, Indian and Bangladeshi women were more likely to lack confidence100. Low confidence on this issue could reduce the likelihood of early symptomatic presentation among people from some ethnic groups.

Not feeling treated with respect or dignity

Not being treated with respect and dignity by healthcare staff was a common concern amongst people from a wide variety of groups. Specific examples of this included the lack of personalised care appropriate to their cultural or religious background, which will be discussed in more detail in Section 4.2.4. Treatment of this kind can result in poor experiences of cancer care.

Feeling shamed or stigmatised

One study into cervical screening participation among South Asian, East European, Chinese and Black African or Caribbean women found that some reported feeling shamed and stigmatised because they had experienced female genital mutilation (FGM) in their country of origin or because of their body size. In these cases, the women’s ethnicity was intersecting with their gender to compound their disadvantage.

General distrust of or lack of faith / confidence in healthcare staff

Healthcare staff behaviours barriers as reported above did, in some cases, lead to a general loss of trust in the healthcare system and healthcare staff. In some cases, this did contribute to delay in seeking help for cancer symptoms or access to screening^[102].

4.2.4 Healthcare System Insufficiently Responsive to Needs of People from Minority Ethnic Groups

Introduction

This section highlights systemic barriers around how the healthcare system responds to the needs of minority ethnic groups. Reflecting the earlier discussion of how the three dimensions of structural, institutional and interpersonal racism are inter-related, it examines evidence of how the healthcare system does not always respond to the specific social and cultural needs of people from minority ethnic groups, and does not always tailor care to address those needs.

Cultural and ethnic needs and preferences not met

Qualitative evidence highlighted specific examples where the cultural and ethnic needs and preferences of cancer patients from minority ethnic groups were not met, and where cancer care in hospital or treatment aftercare was not always tailored to their needs. Specific examples from one study with cancer patients included a Black or Black British Caribbean man commenting on the lack of culturally appropriate food in hospital; and Black or Black British Caribbean women who experienced poor access to appropriate wigs and haircare. Other unmet needs were for prostheses and lymphoedema sleeves matching the person’s skin colour; information about side effects of treatment associated with the person’s ethnicity or skin colour; and advice on diet and lifestyle appropriate for the person’s ethnic background. Some studies reported on the lack of ethnic diversity in existing support groups; and found that people wanted access to support groups which would enable them to meet people in their situation with similar ethnic backgrounds^[103]. One Bosnian study participant commented on a GP’s lack of empathy about the psychological impact of war and torture experienced by Bosnian migrants: this suggests that their treatment was not trauma-informed. Some studies reported on people who were not given a choice of a female or male healthcare professional or where their preferences were not met. This had resulted in loss of dignity, a poor hospital experience and distrust of cancer screening services. Inattention and insufficient responsiveness to specific needs is a recurring feature of healthcare provision reported in qualitative studies that have explored the lived experience of people in minority ethnic groups.

Inadequate culturally appropriate communication and information materials

Some studies discussed the poor availability of culturally appropriate communication and information materials for people from minority ethnic groups. One review of barriers to breast cancer screening among women of Black African and Black Caribbean descent highlighted the lack of tailored communication strategies for them. A study with Black African, Caribbean, Black British, and Mixed-Black women found concerns about culturally insensitive advice and information resources88. Participants in a study with South Asian (Gujarati Hindu) women discussed potential ways to raise awareness about breast care and screening, but some commented that their GP practices would not allow local groups to leave leaflets there94. The CPES for England (2012-13) found that non-White patients (particularly Asian patients) were less likely than White patients to receive an understandable explanation of treatment side effects. If information materials about cancer are not appropriately or sensitively tailored for people from minority ethnic groups, they might not fulfil their purpose of informing them about cancer screening and treatment.

Under-representation of people from minority ethnic groups in promotional materials

Studies discussed the under-representation of people from minority ethnic groups in promotional materials about cancer, with participants suggesting ways to address this. A study with a South Asian (Gujarati Hindu) women’s cancer support group recommended that screening promotional materials should include images of South Asian women. In a study with Black African, Caribbean, Black British and Mixed-Black women with lived experience of uterine cancer, participants wanted to see women with similar skin tone and racial features in publicity campaigns. They recommended using images of Black people and real-life stories: the authors described the current absence of such images as “colourism” (p.136). An analysis of the UK breast cancer landscape found that people from minority ethnic groups, specifically Black women, are under-represented in health promotion and health educational materials, and called for images of Black and other non-White breasts to be available so that everyone can see what breast cancer looks like ^[104]. The RHO report on genomics and precision medicine also highlighted this issue in the context of healthcare research ^[105]. The relative absence of people from minority ethnic groups in publicity materials and campaigns about cancer could result in some people from these groups perceiving that cancer and cancer screening are not relevant to them. This could result in them missing cancer symptoms and hence delaying a cancer diagnosis.

Insufficient information available about cancer risk and ethnicity

One study discussed the limited information available about cancer risk and ethnicity. It found that there was insufficient information available for Black women about their higher risk of early onset breast cancer compared with White women, and that this risk is not communicated by the NHS. The issue of poor awareness by healthcare professionals about the variation in cancer risk by ethnicity is discussed in Section 4.2.7.

Genetic testing

Research indicates that the benefits of genetic testing are not equitably available to people from minority ethnic groups. Examples of this include relevant family history not being taken into account; targeted promotional materials not being available for specific ethnic groups; the benefits of testing not always being promoted or explained clearly; and concerns about affordability, also mentioned in Section 4.3.2.2 ^[106]. The RHO cited evidence that some people from minority ethnic groups feel that health professionals impose their own views about genetic testing and steer people’s decisions. This issue is also discussed in Section 4.2.7.

4.2.5 Communication Barriers

Introduction

This section discusses evidence about communication barriers experienced by people from minority ethnic groups, including patient factors and healthcare system factors.

Language and literacy: patient factors

Many studies discussed language barriers, both spoken and written, experienced by people from a wide range of minority ethnic groups, including some South Asian groups, Chinese, Muslim women including Arabic speakers, the Gypsy, Roma and Traveller community, Polish migrants and Black African women from both English and non-English-speaking countries of origin. Some studies reported more significant barriers among older people, with ethnicity intersecting with age. Difficulties also arose around the difference between social and medical English and in understanding local dialects and accents. A few studies also discussed literacy barriers in relation to limited ability to read English or written materials in general and a preference for visual materials. A Muslim informant in one study commented that their community were more visual learners. Language barriers affected registering with a GP, booking and attending GP appointments, making phone calls to healthcare services, discussing a cancer diagnosis ^[107], understanding screening invitations and appointment letters ^[108], understanding of the HPV vaccination programme, referral to cancer genetic services and participation in genomic research. These findings show that language and literacy are significant patient factors which impede people’s access to cancer services.

Language and literacy: healthcare system factors

Insufficient or poor-quality interpretation facilities

Several studies discussed experiences of insufficient or inadequate interpretation facilities in healthcare settings, in terms of availability or quality. A study with members of the Gypsy/Roma/Traveller community found that none reported access to interpretation facilities in primary care, though facilities were available in hospital98. Other studies with cancer patients from a range of minority ethnic groups found that interpreters were not routinely available or used in the hospitals they attended; and that patients were reluctant to ask for this service if they were uncertain if it was an entitlement^[109]. Poor quality interpretation was also reported. One study reported on an interpreter with poor English language skills and poor-quality interpretation of medical terms. It also reported that late arrival of interpreters for appointments and poor-quality phone interpretation had an adverse impact on patient experience. In the absence of formal interpretation services, patients often relied on informal interpretation, as discussed next.

Informal interpretation by family, friends, healthcare staff or community advocates

Studies with cancer patients from a range of minority ethnic groups found that, because of poor provision of formal interpretation services, non-English speakers routinely relied on family or friends to interpret for them in hospital. One study found that a cancer patient advocacy service which supported members of minority ethnic groups sometimes helped with interpretation, though not all of the advocates saw this as part of their role. If none of these options was available, consultation occurred without interpretation or with healthcare staff interpreting. Informal interpretation of this kind could be problematic. It could result in poor communication between patient and healthcare staff, with challenges including giving informed consent. It could place an additional burden on patient and interpreter. In some cases, family or friends withheld bad news from the patient or made decisions on their behalf, for example about the importance of screening. These oral interpretation barriers were accompanied by barriers relating to written translation which is discussed next.

Difficulty in accessing written materials in languages other than English

There was evidence of difficulties in relation to cancer screening because written materials were not available in the languages needed or because the process of requesting them was difficult. However as noted above, literacy barriers meant that, for some people, written materials in any language were inaccessible.

4.2.6 Cultural Factors relevant to Cancer Care

4.2.6.1 Attitudes and Beliefs relevant to Cancer

Introduction

This section discusses attitudes and beliefs relevant to cancer which can act as barriers to accessing cancer care among people from minority ethnic groups. One study argues that ethnicity and cultural factors play a significant role in shaping attitudes and behaviours related to cancer. While some of these barriers will be experienced by people from all ethnic groups, some are either specific to or more common among some minority ethnic groups. These barriers can adversely affect breast self-examination, uptake of screening, presentation with cancer symptoms, early cancer diagnosis, genetic testing and accessing support from relatives and friends. It is important to highlight that emotional responses and beliefs of this kind are shaped by historical systemic neglect, lived experiences of discrimination, and structural barriers to care.

Fatalism

Fatalism includes beliefs that cancer diagnosis is a matter of fate; and that cancer is not treatable or curable and is a death sentence. While fatalism is found in all ethnic groups, quantitative surveys generally show that, compared with the White British group, it is more common in some minority ethnic groups including Black Caribbean, Black African, Indian, Pakistani and Bangladeshi people^{[110], [111], [112]}. A qualitative study with Gypsy/Roma/Traveller people found that while fatalism had declined and was now more common among older people, poor experiences of healthcare were still perceived by some to justify cancer fatalism. Some fatalistic attitudes are linked to religious beliefs, as discussed below.

Religious and spiritual beliefs

Religious beliefs relevant to cancer include fatalistic attitudes such as ‘it is God’s will’ or that no-one can change the decision of God. However, some studies show religious beliefs as a barrier for some participants but as a positive force and coping mechanism for others ^{[113], [114]}. For example, a study with South Asian (Bangladeshi, Indian and Pakistani) and Black African Muslim breast cancer patients found that while some had fatalistic attitudes and would not attend appointments, others would trust in God and would attend. Religious beliefs can interact with cancer-related taboos and stigmas, which are discussed below.

Cancer taboo and stigma

Studies with different ethnic groups discuss cancer as a taboo (something unmentionable, surrounded by secrecy, a hidden condition) and/or as a stigma (something shameful). These beliefs were found among people from minority ethnic groups including Chinese, Gypsy/Roma/Traveller, Black African and Black Caribbean and South Asian. Other studies included people from a range of ethnic groups. Some studies found that people refrained from using the word cancer, or whispered it, or used the ‘C’ word. These beliefs were more common among older people and were also found among older White British women, though among people from minority groups their ethnicity intersected with age to compound their disadvantage. In some cases, lack of discussion was also to protect and avoid burdening family members. Secrecy or shame could act as a burden, cause stress and isolation, and deter people with cancer symptoms from accessing healthcare. Studies have also found shame about cancers in specific areas of the body perceived as embarrassing, such as bowel cancer and cancers which affect sexual function or urinary incontinence, with shame about ‘what people would say’ about how they developed the cancer99. There is stigma about specific cancers associated, even inaccurately, with sexual activity or promiscuity, such as gynaecological cancers. Stigma is experienced by Black African and Caribbean men in relation to digital rectal examinations to investigate possible prostate cancer symptoms, because of the perceived association with homosexuality and homophobia ^{[115], [116]}. Cultural resistance to intimate examinations, driven by masculinity beliefs, was also discussed. Studies with Black African, Black Caribbean and South Asian women found a perception that they were at low risk of developing cancer as it was a ‘White person’s disease’.

Preference for traditional remedies over or as well as Western medicine

Preferences for traditional remedies were found in studies with people from several minority ethnic groups including Black African, Black Caribbean and South Asian. In a survey of people newly diagnosed with cancer, British South Asian respondents were more likely than White British respondents to believe that alternative therapies were as effective as surgery, radiotherapy or chemotherapy as treatments for cancer. A survey of White British, Caribbean, African, Indian, Pakistani, and Bangladeshi women found that those from minority ethnic groups were more likely to endorse “using traditional remedies” (p.2339). One study found that negative attitudes by healthcare staff towards incorporating alternative forms of medicine as part of their treatment adversely affected cancer patients’ experience of care.

4.2.6.2 Emotional Responses to Cancer

Introduction

Evidence suggests that the main emotional responses to cancer among people from minority ethnic groups are fear and associated concerns and worries, and embarrassment. Both fear and embarrassment can act as barriers to accessing healthcare, including screening, other tests, and treatment.

Fears and concerns about cancer

Cancer fear is defined as a negative emotional reaction to the threat of cancer. Studies report on a wide range of fears including fear of the unknown, of seeking help, that screening or other test procedures would be painful, of a cancer diagnosis, treatment and side effects, of genetic testing and the potential implications, and of death.

Several quantitative surveys have explored fear and concerns about cancer. One survey using the CRUK Cancer Awareness Measure found that the most common barrier to seeking medical help was worry about what the doctor might find, with South Asian women more likely to be worried compared with White and Black women. A separate survey using the same measure found no statistically significant differences between ethnic groups in relation to being ‘too scared’ to visit a doctor with cancer symptoms, except for Black Africans, who were significantly less likely than White British to report being too scared. A survey of women from several ethnic groups found that, compared with White British women, African and Indian women were more fearful of cancer, Bangladeshi women less fearful, and Pakistani and Caribbean women were similar. Participants who were less acculturated (see explanation at Section 4.2.6.2) were less likely to worry about cancer or to be particularly fearful of the disease. The authors suggest that this could reflect that other diseases were more prominent in their country of origin. This finding reflects differences across minority ethnic groups in relation to how cancer is perceived.

Qualitative findings about fear cover a wide range of issues. For example, Black women fear family or partner abandonment and loss of marriage prospects; and African-Caribbean men worry about changes to sexual function and impotence following prostate cancer treatment. Studies into genetic testing found fears about not knowing what would happen if gene variants that could lead to cancer were detected, and fear of death. Fear of research and about how samples would be used was also reported. A survey of people living with cancer found that respondents with minority ethnic backgrounds were more likely to be concerned about coping with their cancer and cancer treatment, its long-term impact, and looking after their family. A study with the Gypsy/Roma/Traveller community also found concerns about socioeconomic vulnerability, and pointed out that this could increase the fear of a cancer diagnosis. Some of these fears overlap with embarrassment in relation to cancer which is discussed next.

Embarrassment about cancer

Several studies report embarrassment in relation to cancer among people from minority ethnic groups. Surveys using the CRUK Cancer Awareness Measure found that, compared with White and Black women, South Asian women were more likely to report that they would be too embarrassed to go to a doctor with breast symptoms. A later study using the same survey measure found that, compared with White women, Black Caribbean, Black African and Asian women were more likely to report embarrassment. Among women from minority ethnic backgrounds, those who migrated to the UK as adults were more likely than UK‐born participants to report being “too embarrassed” to talk to a GP about symptoms.

Research points to other specific causes of embarrassment. These include the importance of privacy and modesty and the perceived immodesty among women in relation to breast and cervical screening procedures, with discomfort about male healthcare providers. Anxiety can arise in relation to areas of the body perceived as embarrassing such as bowel functioning and sexual body parts. Some individuals may feel discomfort due to needing family help with the bowel screening test. Anxiety may also be linked to prior experiences such as FGM.

Acculturation

Acculturation refers to the process through which individuals or groups “adopt the cultural norms, behaviours, and practices of another cultural group, often due to prolonged contact or interaction”^[117]. This concept is relevant to immigrants into the UK, and some cancer-related studies discussed differences in experience between first and second generation migrants. This reflected aspects of ‘acculturation’, whereby the younger generation is more used to the healthcare system, less likely to experience other barriers such as language, and more likely to speak up for themselves. A survey of White British, Caribbean, African, Indian, Pakistani, and Bangladeshi women assessed their acculturation using self-reported measures of migration status, ability to speak English, and understanding of health leaflets. Less acculturated women were less likely to worry but more likely to feel uncomfortable to think about cancer, which could affect their likelihood of early detection. This provides another example of the intersection between ethnicity and gender, compounding disadvantage.

4.2.7 Insufficient Awareness, Knowledge and Understanding

Introduction

This section discusses barriers in awareness, knowledge and understanding experienced, both among people from minority ethnic groups affected by cancer, and among healthcare staff. The evidence covers cancer as a disease, cancer symptoms, cancer risk and the importance of early diagnosis; and cancer healthcare such as screening and treatment.

4.2.7.1 People affected by Cancer

Health literacy

The concept of health literacy provides a useful overarching description for the barriers experienced by people affected by cancer which are described below. According to Public Health Scientist Professor Don Nutbeam, almost all definitions of health literacy have the same core elements: “the literacy and numeracy skills that enable individuals to obtain, understand, appraise, and use information to make decisions and take actions that will have an impact on health status” (p. 161)^[118]. SG’s first Health Literacy Action Plan^[119] stated that health literacy was “about people having enough knowledge, understanding, skills and confidence to use health information, to be active partners in their care, and to navigate health and social care systems” (p.3). A literature review about health inequalities in cancer care cites evidence that lower health literacy is more common among people from ethnic minorities and from more deprived areas. One survey about cancer symptoms and barriers to presentation to primary care found lower written health literacy among African and South Asian (Bangladeshi, Indian and Pakistani) respondents compared with White British and Caribbean respondents, with spoken health literacy lower among Bangladeshi respondents. Low health literacy was associated with some of the barriers described earlier in Sections 4.2.3 and 4.2.6.2, including lacking confidence to talk to a GP and embarrassment. Health literacy is relevant to awareness of cancer symptoms, which is discussed next.

Lower awareness of cancer symptoms

Survey research highlights differences by ethnic group in awareness of cancer symptoms. Surveys in England using the CRUK Cancer Awareness Measure found that awareness was lower among people from minority ethnic groups compared with White participants. South Asian and Black women were much less likely than White women to report checking their breasts at least once a month, with South Asian women slightly less confident that they would notice a change in their breasts. A survey with newly diagnosed cancer patients found that British South Asian participants were less likely to agree that screening was effective in detecting cancer at an early stage. A survey of people living with cancer found that, compared with White respondents, those from minority ethnic backgrounds were less likely to have taken their symptoms seriously, and were more likely to think that their symptoms were related to other pre-existing health conditions. However, a survey with women to explore barriers to symptomatic presentation in primary care found no ethnic differences in body vigilance, but lower levels among minority ethnic women who had migrated to the UK as adults.

Qualitative research also highlights ethnic variation in awareness and understanding of breast cancer. One qualitative study with Black African, Black Caribbean and White British women found that women from all those groups had gaps in breast awareness. Most Black African and first generation Black Caribbean women in this study generally thought they were not at risk of breast cancer. Black African women in this study also had poor knowledge of breast cancer symptoms and were unaware of the importance of early diagnosis. Many first generation Black Caribbean and second generation Black African women were unaware of symptoms other than lumps. Another review found that while many Black women routinely undertook breast examination, some lacked confidence that they could differentiate between ‘good’ and ‘bad’ breasts. A qualitative study with South Asian (Bangladeshi, Indian, Pakistani) women found that they were unaware of the seriousness of breast cancer and had poor awareness of breast cancer symptoms, breast self-examination, and of the breast screening programme. Awareness of cancer symptoms is linked to understanding of personal cancer risk, which is discussed below.

Poor understanding of cancer risk

Reviews and other studies found that people from various minority ethnic groups thought their cancer risk was low. This had a negative influence on uptake of cancer screening, with women believing that screening was unnecessary if they had no symptoms or were feeling well. A study with women from Black ethnic groups found that, if cancer symptoms were misattributed by healthcare staff to other conditions, women might normalise them, which then reduced their perception of their cancer risk. In relation to prostate cancer, one review cited UK survey evidence that Black men of African descent had low awareness of their risk of prostate cancer. A qualitative study with African-Caribbean men diagnosed with prostate cancer found that they had limited knowledge of the prostate and prostate cancer at the time of their diagnosis. A qualitative study with people from several minority ethnic groups about barriers to and uptake of colonoscopy found that, while knowledge about the risks of the procedure could be a barrier, awareness that it could help detect cancer was also reported as an enabler^[120].

Insufficient knowledge about genetic testing

Several studies reported low awareness and knowledge among minority ethnic communities in relation to familial risk, genetic testing and genetic cancer services. One qualitative study with Black African women found that some lacked knowledge about their family health history and hence level of risk, particularly if most family were living in Africa and might not know about their own risk. They were also uncertain about how to access genetic testing and whether the NHS would cover the cost.

4.2.7.2 Healthcare Staff

Research showed that some healthcare staff had insufficient knowledge about how to identify cancer symptoms, and the risk of cancer, among people from minority ethnic groups. This could reduce staff responsiveness to self-reported symptoms and hence the likelihood of early diagnosis.

A qualitative study with women from several minority ethnic groups about their experience of the breast cancer care pathway in England found that healthcare professionals had insufficient medical knowledge about how breast cancer manifests in non-White minority ethnic women. It gave as an example a Black African woman presenting with a self-identified cancer symptom (peau d'orange) but being dismissed. A UK review which considered evidence about prostate cancer risk among Jamaican men highlighted the need for health professionals to have sufficient knowledge and awareness about the prevalence of prostate cancer in this group, and the risk among the wider group of Black men of African descent. A study reported on the experiences of African-Caribbean men who had been treated for prostate cancer and discharged to primary care. They perceived that GPs lacked knowledge about the greater risk of prostate cancer experienced by their ethnic group. This resulted in failure to recommend or support prostate-specific antigen (PSA) testing and could lead to inadequate provision of healthcare services and support. Similar issues have also been reported in the context of genomics literacy and genetic testing.

4.2.8 Under-Representation in Research relevant to Cancer Treatment

Many studies and reports discuss the general under-representation of people from minority ethnic groups in clinical trials, genomic care and precision medicine; and in research into care needs and barriers to accessing care^{[121], [122]}. Some of the barriers contributing to this under-representation have been discussed in previous sections. The poor recording of ethnicity and use of aggregated data (discussed in Section 3.1.5) are also relevant to this issue^[123],[124].

A study into the recruitment of patients from minority ethnic groups to clinical trials in four disease areas, including breast cancer, found that participation was lower among people from minority ethnic groups and among female patients. Barriers to participation specifically affecting people from minority ethnic groups echoed some of those discussed above, including language and the role of family members in decision-making. Another barrier found was the perception of trials as ‘experimental medicine’ which carried risk ^[125].

The RHO review into genomics and precision medicine105 reported under-representation of minority ethnic groups in genomic datasets with, in some cases, ethnicity data missing altogether. This presents a barrier to improving understanding about genetic variation among ethnic groups and limits the predictive value of artificial intelligence (AI) risk prediction tools. The review discussed reasons for this under-representation. These included mistrust arising from past discrimination and historical trauma; and mistrust of the healthcare system, research in general, and how data would be used. Another reason was the lack of meaningful, rather than tokenistic, community engagement.

One study into the potential use of AI to improve the breast screening programme in Scotland highlighted the potential risk of inequalities in detection if AI is not trained on a wide range of population data, including different ethnic groups ^[126].

Some studies commented on how research often aggregates data from different minority ethnic groups, without making distinctions between them, although barriers to healthcare and inequalities experienced can vary between ethnic groups.

4.2.9 Summary

This sub-chapter has developed a narrative synthesis of evidence that describes the different types of barriers to access to cancer care which are experienced by people from minority ethnic groups. While some of these barriers could be experienced by anyone, some are specific to people from minority ethnic groups or are experienced by them more frequently, with variation between and within those groups.

Evidence about general healthcare system factors shows how people from minority ethnic groups are required to interact with healthcare systems which they find difficult to navigate, often without adequate information, support or understanding of the challenges they face. It has discussed the difficulties they experience in accessing care along the cancer pathway, including screening, early presentation to primary care with cancer symptoms, specialist care, post-treatment care and the complaints system. These barriers result in delayed access to healthcare services and poor experience of cancer treatment. They contribute to low confidence and trust in the healthcare system in general, which could discourage future uptake of screening and accessing care.

Healthcare staff and patient interaction was highlighted as another important issue impacting confidence and trust. Evidence shows how healthcare staff behaviours can contribute to negative perceptions and experiences of cancer screening, primary care and cancer treatment among people from minority ethnic groups. Staff behaviours experienced included dismissal of symptoms and brusque, patronising or insensitive behaviour. People’s responses to these behaviours included not feeling listened to, feeling disempowered, poor involvement in decision-making, and not feeling treated with respect and dignity, which again contribute to a loss of trust and confidence. These barriers could also discourage people’s future uptake of screening and cancer-related healthcare.

Evidence showed that the healthcare system is insufficiently responsive to needs in relation to care and support for people from minority ethnic groups. Examples of inattentiveness and unresponsiveness included the failure to meet people’s specific needs relating to skin colour, under-representation in promotional and information materials, and not being given a choice of a female or male healthcare professional. These barriers contribute to people from minority ethnic groups having a worse experience of cancer care compared with people from other groups. In some cases these failures were attributed to racism, which is discussed in Sub-chapter 4.3, covering the impact of institutional and interpersonal drivers of racism on cancer healthcare inequalities.

Research indicated that communication barriers impede access to many aspects of cancer care for people from minority ethnic groups. Language and literacy barriers are key factors for some people, though they are more common among older people and first generation immigrants. These barriers can adversely affect their access to many aspects of healthcare, including registering with a GP, phoning healthcare services, and understanding letters about appointments and screening invitations.

The healthcare system’s response is often inadequate, with insufficient provision of formal interpretation services, and inadequate translation of or signposting to written materials in languages other than English. This can result in the use of informal interpretation by family and friends, which can be problematic.

Other cultural factors relevant to cancer care were also found to be barriers.

This evidence shows the impact on access to cancer care of some attitudes and beliefs which, surveys show, are more commonly held by people from some minority ethnic groups. The main barriers of fatalism, taboo and stigma about cancer, fear and embarrassment could result in delayed presentation to healthcare. The concept of acculturation suggests that some of these barriers are more common among older generations. The evidence suggests a need to develop communication materials that acknowledge and respond to these emotional responses and belief systems, recognising that these will have been shaped by historical discrimination and disadvantage (see Sub-chapter 4.3 for further consideration of drivers of racism). Potential enablers will be discussed in Section 4.4. and include campaigns to address these issues and reduce stigma.

Insufficient awareness, knowledge and understanding about cancer among some people from minority ethnic groups and among healthcare staff also present barriers. Among the general population, while these barriers are found among people in all ethnic groups, surveys generally show that they are more common among people from some minority groups. Those findings reflect inadequate provision by the healthcare system of accessible and culturally appropriate information. They also reflect insufficient support for people to develop health literacy, a concept describing the knowledge, understanding, skills and confidence needed to use health information, with evidence showing lower health literacy among people from minority ethnic groups and in more deprived areas. Evidence also shows lower awareness of cancer symptoms and lower understanding of cancer risk among some people from some minority ethnic groups, with some differences by generation and migration history. Among healthcare staff there is evidence of low awareness about how cancer symptoms manifest among people from specific minority ethnic groups, and in some cases poor understanding about ethnic variations in cancer risk. All of these issues could impede early diagnosis.

There is evidence of under-representation in research relevant to cancer treatment, with people from minority ethnic groups under-represented in clinical trials, genomic care and precision medicine, and research into cancer care. This is partly because barriers discussed above obstruct their inclusion. Other causes are poor recording of ethnicity and the aggregation of different ethnic groups which results in a loss of detail about ethnicity. These issues are relevant to cancer treatment, in that research findings might not apply to minority ethnic groups.

Taken individually or combined, these barriers could prevent or delay people from minority ethnic groups from accessing healthcare services, including registering with a GP, participating in cancer screening, and symptomatic presentation to primary care. If people do present to healthcare services, these barriers can cause cancer symptoms to be missed and hence result in delayed diagnosis. If people need cancer treatment, these barriers can cause poor experiences. Those experiences can damage people’s confidence and trust in the healthcare system in general, which could discourage future uptake of healthcare.

The next chapter discusses evidence identified in this review of structural, institutional and interpersonal drivers of racism experienced by people accessing cancer care.

4.3 Structural, Institutional and Interpersonal Drivers of Racism

4.3.1 Introduction

Sub-chapter 4.3 addresses this review’s second research question: ‘What evidence is there about the impact of structural, institutional and interpersonal drivers of racism on cancer healthcare inequalities?’ The levels of racism framework discussed in Section 3.1.1 is used to frame the findings of racism at structural, institutional and interpersonal levels, including both explicit and implicit forms of racism.

4.3.2 Structural Drivers of Racism

4.3.2.1 Introduction

The levels of racism framework described the structural level as reflected in disadvantaged access to physical, economic and social resources. It noted the alignment between this description and the concept of the social determinants of health. It discussed evidence of ethnic disparities in health outcomes during COVID-19, and in relation to the social determinants of health, shaped by long-standing structural inequalities.

This section discusses evidence of structural barriers relevant to cancer care established by this evidence review. These are practical issues which can be described as the social determinants of health, and often intersect with each other to exacerbate people’s experience of disadvantage. They can hinder people from minority ethnic groups from accessing healthcare generally, as well as cancer services specifically, and worsen their experience of cancer treatment.

4.3.2.2 Findings

Socioeconomic disadvantage experienced by people from minority ethnic groups can affect their likelihood of accessing cancer screening, welfare following a cancer diagnosis and genetic testing. A survey of people living with cancer showed that, compared with White people, those from minority ethnic groups were more likely to have had to dip into their savings during or after cancer treatment, and to be concerned with paying monthly utility bills, which is likely to adversely affect their experience of cancer treatment. One qualitative study with people from African-Caribbean, Irish, Pakistani, Indian, Bangladeshi and Chinese ethnic groups diagnosed with cancer reported that some participants had low awareness of or difficulty accessing welfare entitlements. A study with Black African women in relation to genetic testing highlighted cost and affordability as a potential barrier for some participants95. Some studies reported the costs and logistics of travelling as barriers, with one example of a Pakistani woman who had to make frequent journeys to hospital and was unaware that she could claim travel expenses. Distance and travel to clinical centres can also be a barrier to participation in clinical trials. Lower educational qualifications linked to socioeconomic status and limited or no literacy were also cited as barriers to accessing cancer services.

Employment issues are closely associated with socioeconomic disadvantage and occurred at different points along the cancer pathway. A survey of people living with cancer found that, compared with White people, respondents from minority ethnic backgrounds reported more difficulty in making time for appointments due to work; and were more likely to have to reduce or stop work following their cancer diagnosis, which had affected their finances. Some studies found participants who were experiencing work pressures, and had difficulty or were fearful about taking time off work to attend screening appointments, present with cancer symptoms or pursue genetic testing. These findings could reflect job insecurity among those in low-paid, temporary or casual employment. Additionally, lack of settled immigration status could be a barrier to obtaining stable employment.

Housing issues can be affected by employment barriers and are also associated with socioeconomic disadvantage. Issues experienced by people from minority ethnic groups included the need for new migrants to find employment and housing while juggling other priorities. Short-term occupancy of rental accommodation and frequent house moves could involve moving out of a GP practice catchment area multiple times, and act as a barrier to registering with a GP and accessing cancer screening. These issues are relevant to the healthcare system barriers discussed in section 4.2.2.

Immigration status intersects with the employment and housing barriers discussed above and can present barriers to accessing healthcare. Obtaining settled status could be a priority for recent migrants over other issues, including accessing health services. Some immigrants will have no recourse to public funds, which is relevant to their socioeconomic status. The absence of settled status or indefinite leave to remain in the UK could present a barrier to GP registration and hence access to cancer screening services, and to pursuing genetic testing. One study reported worry among new migrants about obtaining advice and information about cancer services and entitlements in case they breached their immigration status84.

Family priorities competing with the barriers discussed above included childcare and other forms of care-giving, and responsibility for family in people’s country of origin. Study participants prioritised these responsibilities over their own health, which thereby presented barriers to access to healthcare for themselves.

Several studies reported on gaps in support experienced by some people from minority ethnic groups. Some findings refer to healthcare staff assumptions that people from minority ethnic groups have support from strong family networks which is not necessarily the case, for example if family members live abroad. One study with African-Caribbean men diagnosed with prostate cancer reported poor experience or none at all with support agencies or social care organisations, though support from informal networks and the church was valued. Another study with women of Asian, Black and Mixed ethnicity found that while participants appreciated the support provided by charities, there was disappointment that these groups were not representative of minority ethnic women.

Pre-existing health issues were perceived as potential barriers to some tests such as colonoscopy; and to participation in clinical trials.

4.3.3 Institutional Drivers of Racism

This review found evidence of institutional racism and discrimination experienced in healthcare settings by people from minority ethnic groups. In one study of the breast cancer care pathway with women of Asian (Bangladeshi, Indian, Pakistani, Other), Black and Mixed ethnicity, participants described experiences which suggested embedded racism and discrimination in the healthcare system, and an unequal distribution of power. This study highlighted the role of healthcare staff attitudes and behaviours towards participants, insufficient medical knowledge about breast cancer management for minority ethnic women, and participants’ perception that the system is designed for the White majority. One review cited a study which noted that, while service provision might not reflect intentional racism, it resulted from an institutionally inadequate response to language, cultural or religious needs, compounded by a lack of cultural competency. A lack of responsiveness to people’s cultural identify or heritage therefore creates disadvantage within the system underpinning cancer care.

Participants from a range of minority ethnic groups perceived that their minority status in society created an added disadvantage in the healthcare system when the healthcare system was “designed for the White majority” (p. 7). A Black or Black British Caribbean cancer patient admitted to hospital whose need for culturally appropriate food was not met stated that: “The hospital predominantly caters for its White audience, and you are a guest with a privilege to sit in their hospital for free” (p. 41) . In the same study, some participants also perceived that class discrimination had combined with racial stereotyping and contributed to their negative experiences. One Black or Black British Other carer described people who were from minority ethnic groups and were working class as being “at the bottom of the hierarchy” (p. 31). A journal editorial reflecting on Black and Minority Ethnic participation in clinical trials noted historical racial abuses associated with clinical trials which contribute to continuing distrust by people from minority ethnic groups. A further study into breast cancer and ethnicity argued that, although it is recognised in the UK that people from minority ethnic groups experience inequities in breast cancer diagnosis and outcomes, the failure to implement targeted policy interventions or guidelines to address these inequities, in contrast with other developed countries, reflects ”racism in action” (p. 6).

Participants in two qualitative studies perceived a lack of diversity among healthcare staff as relevant to the care they received. A study in Scotland included Chinese, South Asian and Black African/ Caribbean participants. They discussed the low number of healthcare practitioners in Scotland from minority ethnic populations, and connected this with difficulties they experienced related to ignorance, racism and poor understanding of their specific needs. Another study with women with breast cancer from Asian, Black and Mixed ethnicity groups discussed the perceived lack of diversity at all levels of the healthcare workforce. This contributed towards their discomfort when they did not see healthcare professionals who looked like them, and their concerns about the perceived lack of minority ethnic healthcare professionals at senior levels influencing service design.

As discussed in Section 3.1.1, all three dimensions of racism are inter-related, and the next section discusses the role of interpersonal racism in cancer care.

4.3.4 Interpersonal Drivers of Racism

4.3.4.1 Racial bias and microaggressions

Evidence reviewed showed that explicit or implicit racism and bias had negatively influenced some study participants’ experience of healthcare. Participants discussed microaggressions, described as “brief and commonplace verbal, behavioural, or environmental indignities, whether intentional or unintentional, that communicate hostile, derogatory, or negative prejudicial slights and insults toward a group” (p. 52). Examples of bias or microaggressions included dismissal of symptoms and delayed diagnosis or misdiagnosis attributed to racial bias. Microaggressions also involved experiencing rudeness or abruptness from healthcare staff and observing their more positive body language with White patients. Healthcare staff not making eye contact with patients from minority ethnic groups but doing so with other White patients in the same room was another example, alongside a perception that White patients were given more information. One study reported fear of racism as a barrier to uptake of screening.

4.3.4.2 Negative stereotyping

A separate manifestation of interpersonal racism is negative stereotyping. There was evidence of actual, or concerns about, potential negative stereotyping of people from minority ethnic groups by healthcare staff. Examples of stereotypes included the ‘strong Black woman’ who should be able to cope with cancer and Black men feeling that they have to present a ‘strong front’ to medical professionals, not wanting to admit they are ill or in pain. Black men with prostate cancer worried about the stereotype that they are ‘sex icons’, resulting in them experiencing difficulties in discussing sexual problems with healthcare staff. One study with people from a range of minority ethnic groups discussed the impact of negative stereotypes, with participants perceiving that they were viewed as aggressive or over-assertive if they asked too many questions about their care, with healthcare staff shutting down questions. Other stereotyping included assumptions made about patients arising from their ethnicity, including the intersecting characteristics of their socioeconomic status, educational background and ability to speak English. Healthcare staff also made assumptions about family relationships, including that people came from large families and would have support available; and listening more to men than to women. This negative stereotyping of, and assumptions about, people from minority ethnic groups adversely affected their experience of cancer care. It also reflected difficulties with communication, which is discussed next.

4.3.4.3 Different communication styles

Minority ethnic participants in one study with women of Asian (Bangladeshi, Indian, Pakistani, Other), Black and Mixed ethnicity perceived that differences in communication style between themselves and healthcare staff could affect their interpersonal relationships. The study described their “self‐silencing” behaviour (p.3) to avoid being misunderstood or offence being taken, and noted that this undermined their agency to express their needs. People from minority ethnic groups with such experiences and perceptions could feel inhibited from presenting to healthcare services with possible cancer symptoms, or from having an open conversation about their needs with healthcare staff.

4.3.4.4 Summary

This sub-chapter has discussed the considerable evidence of how people from minority ethnic groups experience racism in cancer care, embedded at structural, institutional and interpersonal levels in the healthcare system. The racism described could have been intentional or unintentional but still constituted racism.

Structural racism takes the form of practical barriers which hinder people from minority ethnic groups from accessing healthcare, including cancer services. These barriers can also be described as the social determinants of health and intersect with each other, and with other barriers described above. Evidence shows how people from minority ethnic groups can experience socioeconomic disadvantage, to which practical barriers such as employment, housing, immigration status and care-giving responsibilities contribute, thereby compounding their disadvantage. These barriers reflect the definition of structural racism shown in Section 3.1.1, in terms of disadvantaged access to physical, economic and social resources. They can prevent people from these groups from accessing cancer care, and can worsen their experience of it. While these barriers could be experienced by anyone, many are more likely to be experienced by people from minority ethnic groups, who experience intersecting disadvantages.

Evidence of institutional racism includes barriers which were also discussed in Sub-chapter 4.2. These include healthcare staff attitudes and behaviours towards patients from minority ethnic groups; insufficient knowledge about and inadequate responses to their cancer care and support, language and cultural needs; and the absence of targeted policy interventions to meet such needs. While institutional racism might not be intentional, it reflects institutionally inadequate responses to language, cultural or religious needs. The failure to implement targeted cancer policy interventions to address known ethnic inequities was described as reflecting ”racism in action” (p. 6). Some research participants, in different studies, described the healthcare system as designed for White people.

Examples of interpersonal racism include dismissal of symptoms and delayed diagnosis attributed to racism, experience of more positive behaviour by healthcare staff towards White patients, and negative racial stereotyping, with some people from minority ethnic groups reporting modifying their behaviour to avoid offending healthcare staff. These experiences, and fear of them happening in future, can adversely affect people’s uptake of cancer care, including cancer screening and symptomatic presentation to primary care; and have significant negative effects on their trust in the healthcare system and experience of healthcare. In addition, as discussed in Section 3.1.2, there is evidence that experiencing racism directly affects people’s physical and mental health. The next chapter will discuss potential enablers which can help address the barriers discussed in Sub-chapter 4.2 and the racism discussed in this chapter.

4.4 Potential Enablers which could contribute to Mitigating Inequalities in Access to Cancer Screening, Diagnosis, Treatment, Care and Experience

4.4.1 Introduction

The previous sub-chapters discussed the barriers which contribute to inequalities in access to cancer screening, diagnosis, treatment, care and experience; and the impact of structural, institutional and interpersonal drivers of racism on cancer healthcare inequalities.

Sub-chapter 4.4 addresses the third research question: ‘What evidence is there about cancer interventions (policies or services) which have been effective in mitigating inequalities and inequities experienced by people from minority ethnic groups?’ It discusses potential enablers which could address the barriers and racism described above. Some enablers would be applicable to everyone, but could disproportionately benefit people from minority ethnic groups, who are more likely to experience some common barriers, as well as intersecting disadvantages. Some enablers would be specific to people from these groups and could address issues relating to racism. Enablers considered by this sub-chapter include some which would be addressed by wider service renewal and reform in the health and social care system, as well as enablers that are specific to cancer care.

The analysis in this sub-chapter is informed by findings in systematic or literature reviews; by suggestions from participants in primary research studies; and by conclusions and policy implications discussed by authors of those reviews and studies. It also takes into account findings from the barriers considered in Sub-chapter 4.2 even if the research did not explicitly identify enablers. It would be important to design and implement enablers for people from specific minority ethnic groups as appropriate, also taking account of other intersecting factors such as their gender and age profiles, as well as the local context of their community. An enabler which would be effective for people from one ethnic group might not be effective for people from other groups, or might need to be implemented differently. Therefore, the implementation of actions to mitigate inequalities requires attention to local contexts and populations. As Dowrick et al (2024)^[127] contend, adaptation to context is a necessary part of the implementation of innovations designed to deliver greater equity.

4.4.2 Healthcare System Factors - General

Introduction

This section discusses potential enablers to address some of the healthcare system factors which were covered in the equivalent section in the barriers Sub-chapter 4.2. Studies and reports included here reflect general findings about the need to build trust, but also to capitalise on existing trust in healthcare providers to design strategies to reduce inequalities.

Offer guidance to new migrants on how to navigate the NHS

Guidance for new migrants is suggested based on findings discussed in the barriers Section 4.2.2. One study suggested that key information about services such as screening should be provided at the initial point of contact with the healthcare system80. Findings that some migrants do not always register with a GP immediately on arriving in the UK suggest that information about entitlement to care, the benefits of early GP registration, and other guidance about how to access the NHS, should be made available via other routes such as community, faith and support groups, and welfare services. The Health Equity Evidence Centre (HEEC) has published guidance for GP practices^[128] on the provision of primary care for people seeking asylum, migrants and refugees, which could also have wider NHS relevance. The guidance states that NHS policy in England is clear that anyone can register and consult with a GP without charge and without providing proof of identity, address, immigration status or an NHS number. This is confirmed in NHS guidance on registering with a GP surgery. However, the HEEC states that evidence from across England, Scotland and Wales shows that this policy is not translated into practice. It highlights the following steps needed to support people from these groups: ensuring a culturally competent multidisciplinary team, improving access to primary and secondary care, and undertaking initial health assessments.

Targeting by primary care to reach people from minority ethnic groups

There were suggestions for primary care to target people from minority ethnic groups, and to be more proactive when they present in primary care ^[129]. Findings from one study with South Asian, East European, Chinese and Black African or Caribbean women highlighted the value of maximising coincidental interactions to promote cancer screening. Some study participants did not register with a GP for several years after arriving in the UK until they needed contraception, or pregnancy or postnatal care. This interaction with the healthcare system presented the first opportunity to invite them for cancer screening.

Interventions to improve cancer screening uptake

One rapid review identified interventions which were found to improve screening participation, including in under-served populations^[130]. These interventions included pre-screening reminders and more personalised reminders for people who do not attend screening. Other findings also suggested GP endorsement of national screening invitations: one evidence review found that a recommendation from a healthcare provider to attend screening was the greatest facilitator of screening uptake. Other reviews and qualitative studies suggest follow-up phone calls or texts and more flexible appointment systems, including online booking options and more convenient locations. It was also suggested that cancer prevention advice could be offered at screening appointments. One review emphasised that building trusted relationships between healthcare providers and minority ethnic communities was key to delivering successful cancer screening programmes. Scotland’s health screening equity strategy^[131] discusses barriers experienced by some groups, including minority ethnic groups; and potential approaches to addressing those barriers, which include some of those enablers highlighted above.

Improved access to genetic testing

Suggestions to improve access to cancer genetic testing include offering testing routinely according to family history and risk and reviewing the eligibility criteria to ensure inclusion of those at higher risk. The provision of cost-free NHS genetic testing was also identified as a potential enabler to improve access. The NHS in England and Scotland offers free genetic testing to people who meet specific criteria about familial cancer risk. This is relevant to the concerns about the affordability of genetic testing discussed in Section 4.3.2.2.

Improvements to cancer treatment experience

Specific suggestions to improve people’s experience of cancer treatment include improved support for people experiencing ongoing treatment side effects, which could improve their adherence to long-term medication. Also suggested was a more transparent hospital complaints process, which would enable people complaining to feel that their views had been treated fairly and were taken into account.

4.4.3 Healthcare staff enabled to provide Culturally Competent Healthcare

Introduction

SG’s guidance for NHS Boards to deliver anti-racism plans includes the following definition of cultural competence: “An ongoing process of seeking cultural awareness, knowledge, skill and encounters in which we continuously strive to achieve an ability to effectively work within an individual’s cultural context” (p. 50, citing Campinha-Bacote, 2002^[132]). Cultural competence has also been described as an alternative phrase for sensitivity^[133]. The same guidance for NHS Boards also defines cultural humility as “a concept and framework that goes beyond cultural awareness and sensitivity… involving a deeper level of self-reflection, self-critique, and an ongoing willingness to learn and engage with individuals from different cultural backgrounds” (p. 50).

The terms cultural competence, cultural sensitivity and cultural humility were all referred to in the evidence examined for this review. For convenience, the term cultural competence will be used in this section. The evidence discussed here presents approaches that show potential to support more culturally competent healthcare, which could improve access to cancer care among people from minority ethnic groups. Some of these suggestions are relevant for wider health care as well as for cancer care.

Appropriate Training and Skills Development

Cultural competence training for healthcare staff was suggested in general terms in some studies. Cultural humility training was also suggested, with a view that diversifying the medical curriculum would inform the provision of culturally responsive and equity-focused care. Specific aspects of training and skills development were also proposed. Suggested topics include how to practise healthcare in a culturally diverse environment and how to research health issues with under-served communities; educational initiatives in primary care about cultural differences; and addressing stigmatising beliefs and practices. Other practical suggestions include training for staff to initiate familial risk assessment and referral to cancer genetics services if appropriate; in how to work with interpreters and advocates; and for GP receptionists in how to increase uptake of screening among non-attenders. The need for staff to have good interpersonal skills and to communicate with empathy and respect were also highlighted, as well as the need to build trusted relationships with patients and families. The earlier reference to a lack of empathy about the psychological impact of war and torture in Section 4.2.4 highlights that some people from minority ethnic groups will have come from areas affected by conflict: this suggests the need for training in trauma-informed practice. This type of training and skills development would ideally lead to greater awareness and understanding among healthcare staff about how to deliver more culturally competent healthcare practice, as discussed next.

Improved Awareness and Understanding

The need for improved awareness and understanding among healthcare staff overlaps with the theme of training and skills development above. General issues identified included the need for GP training to involve a greater focus on the needs of specific minority ethnic groups, and for better understanding of ethnicity and cancer risk and how cancer manifests in the bodies of Black women. One study highlighted the need for better understanding of the significance of intersectionality in patients' identities and roles. Other specific points raised included the need to avoid negative biases and stereotypes, and how bias can affect care relationships. Practical suggestions include the need for improved understanding of the situation and needs of new migrants, taking account of their immigration status; and the need for appropriate matching of community health advocates to patients, taking account of their ethnicity. Prostate cancer was specifically highlighted, with the need for healthcare staff to understand how to assess prostate cancer risk in Black men and how to take into account ethnic disparities when interpreting PSA results. Improved awareness and understanding among healthcare staff should ideally inform improved healthcare practice, which is discussed next.

Improved Healthcare Practice

Specific suggestions for improvement from participants in one study with South Asian (Gujarati Hindu) women diagnosed with cancer included avoidance of cultural assumptions about patients and their knowledge, greater support at the time of cancer diagnosis and during treatment, more patient involvement in treatment decisions, promotion of patient courses for self-management and post-treatment self-care, referral to appropriate support groups, and wider use of the Macmillan Holistic Needs Assessment tool with people from minority ethnic communities. Other studies suggest the involvement of health professionals in the delivery of health education. Healthcare practice could also be informed by greater representation of people from minority ethnic groups among healthcare staff, as discussed below.

Greater diversity among healthcare staff

Studies suggest that greater diversity among healthcare staff, reflecting patients’ lived experience including ethnicity and language, would also serve as an enabler of access to healthcare. A survey with newly-diagnosed cancer patients found that, compared with British White patients, more British South Asian patients preferred to receive sensitive information from “someone of the similar religion or background to me” (p. 16). Increased diversity of those involved in making decisions about research funding was also suggested.

4.4.4 Delivery of Culturally Appropriate Policies and Services

Introduction

Several studies suggest the general need for culturally appropriate and sensitive policies and services. The following specific areas for improvement were identified.

Interventions to improve screening uptake and early symptomatic presentation

Findings from a survey about breast cancer awareness and barriers to symptomatic presentation informed recommendations to tailor interventions for women from different ethnic groups. For example, interventions for South Asian (Bangladeshi, Indian and Pakistani) women should focus on improving knowledge of breast cancer symptoms and the national screening programme, promoting confidence to detect breast changes, and tackling emotional barriers to symptomatic presentation to their GP. Interventions for Black women should focus on improving knowledge of breast cancer symptoms and skills to detect breast changes. Another study highlighted the need for nationally targeted interventions for specific ethnic groups at higher risk of early onset of specific cancers, such as early breast screening for Black women, which is already happening in some areas of England. Tailored and targeted interventions of this kind can reach people from minority ethnic groups who do not access services.

Provision of advocacy and support services

One study engaged with people with cancer and their carers from a range of ethnic groups who were receiving a cancer community advocacy service. Findings suggested that advocates and people in similar roles can help people find out more about their illness and treatment processes, and help with other practical needs such as access to welfare benefits and funding for home modifications and adaptations. This is particularly the case if advocates and clients are appropriately matched by ethnicity and for gender preferences to be met. Two studies highlighted the benefits of support networks and self-support groups, facilitated for or by, people from minority ethnic groups, to provide them with emotional support and address their fears and other emotional barriers. Advocacy and support services of this kind can thereby contribute to the wellbeing of cancer patients, which can in turn improve their experience of cancer treatment and post-treatment support.

Improved provision of culturally appropriate treatment options

The poor availability of wigs, hair care, cosmetic, lymphoedema and prostheses services matching the patient’s skin colour was discussed in section 4.2.4. Ethnically and culturally appropriate options should be offered routinely to support access to culturally appropriate care and to enhance the experience of people during and after cancer treatment. Evidence showed that the provision of healthcare or peer support by female staff was important for females, and that it should be offered routinely or on request ^[134].

Improved links, referral procedures and information exchange between care providers

One study with African-Caribbean men who had been treated for prostate cancer highlights the need for systematic links, referral procedures and information exchange between healthcare, social care, voluntary sector, community organisations and churches, to improve the quality of life for cancer patients.

4.4.5 Delivery of Culturally Appropriate Awareness-Raising and Communication

Introduction

The evidence reviewed was consistent about the need to develop culturally appropriate and sensitive information and awareness-raising initiatives to provide practical information and address the barriers described earlier. Several studies highlight the need for such initiatives to be specifically targeted at people from minority ethnic groups or by religion. Examples of how this could work in practice are discussed below.

Representation

The need for cancer promotional materials to be more inclusive was highlighted, with pictures, videos and campaigns including non-White as well as White people. This would help people to feel more valued and included, and alert them that cancer was also relevant to them.

Communication topics

The evidence reviewed suggests some specific topics about which targeted communication with people from minority ethnic groups would be valuable. Topics suggested include cancer symptoms and building confidence among women to recognise breast changes and to go to the GP. Demonstrations of breast self-examination and the colorectal screening testing kit, and tackling cultural barriers about digital rectal examination, were also proposed. One review cited a study reporting on a prostate health education programme following which men in the intervention group were better able to identify more symptoms and to identify risk factors. It was suggested that messages should also address cultural taboos and beliefs as discussed in Section 4.2.6, including fatalism and the belief that cancer is not treatable. These messages could be supplemented with reassurance about shared decision-making between patient and healthcare staff, which would reflect a key principle in SG’s Realistic Medicine^[135] approach. Genetic testing was also proposed as a message topic to raise awareness of risk factors including family history.

Communication channels

Evidence suggested that information should be disseminated through minority ethnic and religious community spaces and communication channels, with attention paid to intersecting characteristics such as gender and age groups. Specific suggestions included using Asian TV and radio stations to promote cancer initiatives such as screening; targeting adverts in settings such as Polish shops and community centres; and producing videos in a variety of languages for social media, for example to demonstrate faecal testing. It was also suggested that people from minority ethnic groups should be represented in this kind of awareness-raising activity, including in health promotion videos and TV campaigns.

Trusted messengers

Suggestions for trusted messengers for communication include patient advocates or navigators, peer educators and former patients. Many studies suggested that community and religious leaders, respected community members and opinion-formers could also reach the target groups. Trusted messengers could also include doctors with whom there is an existing trusting relationship. The potential to use a positive framing to deliver the messages is discussed below.

The use of positive messaging

The evidence reviewed highlighted the potential value of positive messaging in facilitating engagement with cancer care among people from minority ethnic groups. One qualitative study co-designed with Muslim women tested videos about Muslim women’s experiences of cancer or screening. It found that the videos increased participants’ knowledge of screening and highlighted to them the value of screening and early detection. They were encouraged by the personal stories in the videos and valued hearing from women they could relate to. Another study highlighted the value of personal stories about positive cancer journeys and outcomes. The value of positive messaging in screening invitation letters has been highlighted. A related approach to messaging would be to take advantage of other motivations for people to access cancer services. These drivers could include fear, family history of cancer or valuing good health, a desire to preserve good health, and a positive outlook on life. There is also evidence that faith-based messaging can be effective. Religious or spiritual attitudes can give people the strength to access tests or cope with cancer treatment. Suggested enablers to address the communication barriers discussed earlier are covered below.

Improved language and literacy enablers

Many studies suggested communication and language enablers which could address the key barriers discussed earlier. A common suggestion includes better provision of written materials translated into languages used by minority ethnic groups. Greater use of non-written formats such as pictures has been proposed for people who are less literate: this could benefit people from any ethnic group. One study suggested that screening invitation letters could be sent in patients’ first language, which in England is recorded on the GP clinical systems which inform national screening programmes, though it stated that screening programmes’ current access to these systems did not allow access to information about a patient's first language. Another common suggestion was the provision of improved on-site professional interpretation and translation services so that family interpretation would not be needed.

4.4.6 Community-based and co-designed interventions

Introduction

Evidence suggests that community-based and co-designed approaches to cancer interventions can enable access by people from minority ethnic groups. Several aspects of this approach are discussed below.

Developing community-based and outreach interventions

Several studies suggest the value in principle of community-based and outreach interventions. These could help improve service provider understanding of the needs of people from different minority ethnic groups; and could offer and support various aspects of cancer services. One cohort study into the uptake of bowel cancer screening found ethnic and religious variations. It proposed, as an implication for policy and practice, the need for exploratory work and engagement with local communities to develop, refine and test culturally appropriate interventions. Specific approaches to delivering such interventions are discussed below.

Community-based events

The evidence reviewed covered a variety of community-based events. For example, a qualitative study undertaken with people from mainly Polish/Eastern European and African communities in northern Scotland focused on how to improve the delivery of cancer screening programmes. Community-led workshops were suggested to build trust in the healthcare system, provide educational content and develop social support to encourage uptake of cancer screening. One review cited a study of a CRUK Cancer Awareness Roadshow community intervention delivered by a trained cancer awareness nurse to members of the public across some regions of England. The study found that Black respondents to a post-intervention questionnaire were significantly more likely to anticipate changing their health behaviours compared with people from White, South Asian or Other ethnic groups. A study of colorectal cancer screening uptake in South Asian faith communities (Muslim, Hindu, Sikh) concluded that face to face and interactive approaches with opportunities to ask questions should be used in community and faith settings, including health fairs. A qualitative evaluation of a co-designed faith-based intervention for Muslim women in Scotland to encourage uptake of cancer screening, supported by two GPs, found that participants enjoyed the meetings element of the intervention. They wanted more such meetings and drop-in sessions with healthcare staff to learn more about cancer, screening and other health issues. While several of these events or proposals involved NHS healthcare staff, the following section discusses interventions involving community-based health workers.

Community-based peer health workers

Several studies highlighted the potential role of community-based peer health workers recruited from the target minority ethnic groups. One study evaluated an intervention to increase cancer screening uptake among South Asian women (of Pakistani, Indian, Bangladeshi or Nepalese backgrounds). It trained peers from similar ethnic backgrounds as community health champions to address potential language and cultural barriers. The intervention increased participant engagement, supported them to discuss personal difficulties, and benefited the peers themselves through improvements in their knowledge and self-confidence. Another study discussed experience in a diverse English city of health champions, recruited from different ethnic communities, to learn about cancer and take cancer messaging back to their communities49. Research with an Asian Women’s Cancer Support Group with experience of breast cancer suggested service improvements including the recruitment of Asian women as community champions to raise awareness. One review cited evidence about the role of link workers in helping Somali women to make an informed decision about attending breast-screening. Mobilising local support from the target ethnic groups is therefore a valuable way to increase engagement, raise awareness, and improve knowledge and confidence.

Support from networks, peers and the community

The evidence reviewed highlighted the value of both formal and informal peer support for cancer patients, some of which was community-based. Peer support networks for people with the same cancer and/or from the same ethnic group were particularly valued. However, groups which were not specific to people’s ethnicity and cultural backgrounds would be acceptable if they felt inclusive and welcoming to people from different backgrounds.

Some participants in a study with South Asian (Bangladeshi, Indian, Pakistani) female breast cancer patients had attended a breast cancer self-help support group which gave them emotional support, encouragement and information about treatment and recovery. The study mentioned above, undertaken with people from mainly Polish/Eastern European and African communities in northern Scotland, also suggested peer-to-peer support networks. A study with African-Caribbean prostate cancer patients who were recruited through a local support group aimed at men in their ethnic group found that the group had provided their most significant source of help and support, filling a perceived gap in healthcare provision. Other studies with Black prostate cancer patients found that they had established informal support networks with other local men with prostate cancer and had benefited from meetings with other Black men in the same situation.

A qualitative study with cancer patients from a range of minority ethnic groups found that access to support networks was a key factor in having a positive experience of cancer care. Participants in a study with Black African, Caribbean, Black British, and Mixed-Black women about experience of uterine cancer highlighted the importance of social support from within their Black communities, and the important role of community spaces and trusted individuals. A study considered above, which described a community advocacy intervention to support people with cancer and their carers from minority ethnic groups, found that advocacy workers provided a range of culturally appropriate support.

The evidence reviewed shows that community networks, peer support groups and local communities can provide people affected by cancer with important culturally appropriate support and social benefits. This can in turn improve their experience of cancer treatment, and in particular their wellbeing after treatment.

4.4.7 Appropriate representation in research

Introduction

The evidence reviewed suggests various issues which, if addressed, could achieve appropriate representation of people from minority ethnic groups in research. Some of this evidence is not about cancer specifically but is still relevant to cancer.

Greater inclusion and diversity of people from minority ethnic groups in research

Recommendations from the RHO genomics review address the need for meaningful community engagement and building trust, and equitable access. They include implementing some of the enablers discussed above, such as using tailored communication channels and providing access to qualified interpreters. Other recommendations include ensuring that research databases hold genetic information that is representative of the population, with appropriate coding and recording of ethnicities; and inclusive recruitment methods. A qualitative study with cancer patients from a range of ethnic groups recommends that future research of that kind would benefit from engagement with an even more diverse range of cancer patients, such as refugees and asylum seekers, gypsies and travellers. Other studies recommend increasing the participation of people from minority ethnic groups in research about uterine cancer, palliative care^[136] and exercise interventions for men with prostate cancer.

Increase ethnicity diversity in cancer risk prediction models

The RHO genomics review found that risk prediction models are not based on datasets representative of minority ethnic groups. This limits their predictive value for people from minority ethnic groups, which could exacerbate existing ethnic inequalities. The review highlighted the need to increase ethnic diversity in these datasets. A study discussed in Section 4.2.8 reviewed the potential use of AI to improve the breast screening programme in Scotland. Its findings highlighted the need for AI to be trained on population data that includes people from different ethnic groups.

Increase differentiation of minority ethnic groups in research

Evidence about barriers to uptake of cancer screening specifically highlighted the need for research to explore the experiences of different ethnic groups and sub-groups and not to aggregate them into a single group. For example, a systematic review into barriers to uptake of breast cancer screening commented that Black women are often treated as a single group. The review found that there were notable differences in cancer screening between Black African and Black Caribbean populations. A review about breast and cervical cancer screening uptake among Black, Asian, and Minority Ethnic women made a similar point. Addressing this issue of failing to differentiate between minority groups would enable analysis of ethnic inequalities in more detail, taking account of the different contexts and experiences of people from different ethnic groups.

Addressing barriers to participation

Trust and accessible information are key enablers to address barriers to participation in research. The RHO genomics review105 recommendations include actions to build trust and overcome the barriers relating to mistrust which were discussed above. It also recommended the establishment of meaningful, sustained and tailored community engagement activities across the healthcare systems. A study that examined barriers to participation in clinical trials highlighted factors potentially enabling access to research. These included the development of accessible information about research and how patient data are used, translation of study materials into multiple languages, and use of interpreters during patient recruitment. The study also covered support for staff in involving family members in decision-making and greater ethnic diversity within study teams. Increasing trust in research and the accessibility of information would enable more people from diverse ethnic groups to participate, thereby strengthening research data.

4.4.8 Address structural barriers

Section 4.3.2 discussed the structural drivers of racism: practical barriers such as employment, housing, immigration status and care-giving responsibilities, which all contribute to socioeconomic disadvantage often experienced by people from minority ethnic groups. It is plausible that tackling these practical barriers would contribute to reducing ethnic inequalities in access to healthcare, including cancer care.

The evidence reviewed provided limited proposals for how health services can address structural barriers that affect people from minority ethnic groups. Explicit suggestions included help with transport to reach cancer screening, help with transport and childcare to enable attendance at support groups and advice on finances and welfare.

4.4.9 Summary

This sub-chapter has discussed potential enablers which could contribute to tackling inequalities and inequities in access to cancer care experienced by people from minority ethnic groups. In some cases, the enablers directly address barriers discussed in the earlier chapters. While some of these enablers would benefit anyone interacting with the healthcare system, they could particularly benefit people from minority ethnic groups, who are more likely to experience the barriers they address, which also compound each other. Other enablers discussed would address the specific needs of people from minority ethnic groups.

Evidence about enablers relevant to general healthcare system factors addressed some but not all of the issues discussed in Section 4.2.2. These include guidance for new migrants to navigate the NHS healthcare system, primary care targeting of people from minority ethnic groups and interventions to increase screening uptake. Evidence about barriers relating to specialist care, post-treatment care and the complaints system could be drawn on to develop interventions which could combine to enhance confidence and trust in the healthcare system.

The evidence reviewed shows the need for healthcare staff to be enabled to provide culturally competent healthcare. Suggested areas for improvement include appropriate training and skills development, and improved awareness and understanding of the needs of people from minority ethnic groups. Evidence also highlights the perceived need for a more diverse healthcare workforce which reflects the lived experience of people from minority groups. These enablers would support healthcare staff to improve their practice and better meet the specific cancer care needs of people from minority ethnic groups.

Other enablers identified would support the delivery of culturally appropriate policies and services. Practical examples include interventions to improve knowledge of cancer symptoms and of the screening programmes, to improve screening uptake and early symptomatic presentation. Studies also recommend the development of cancer advocacy services and the facilitation of support networks and groups, which could improve the experience of cancer patients during and after treatment.

There was consistent evidence about the need for delivery of culturally appropriate awareness-raising and communication. This would provide practical information for people from minority ethnic groups via trusted messengers and appropriate communication channels to address the barriers described earlier. Specific topics proposed included cancer symptoms and demonstrations of, for example, breast examination. Messages could also address common attitudes and beliefs about cancer, including that it is not treatable, with the use of positive messaging to engage people also suggested. Improved access to translated written materials and formal interpretation services would help address the language barriers discussed earlier.

Studies suggested that engagement with community-based and co-designed interventions could help engage people from minority ethnic groups in aspects of cancer prevention, and elicit and address their needs. This should inform improved design of and access to cancer care services and improving people’s trust and confidence in the healthcare system. Examples of community-based events include community-led workshops, cancer roadshows and facilitated meetings with healthcare staff. Community-based health workers such as health champions from the target minority ethnic groups could play an important role in facilitating engagement with and supporting community members, as could local peer support networks, both formal and informal. There could be advantages to develop or support such approaches routinely, given the potential benefits to patients.

Evidence about the need for appropriate representation in research highlights the need to increase the ethnic diversity of people in research databases, datasets used for risk prediction models and research generally. Initiatives of this kind would need to take precautions to avoid the perpetuation or exacerbation of existing ethnic inequalities. Previous studies have recommended disaggregating data by ethnicity to differentiate and better understand the experiences and needs of people from different groups. These improvements would increase the relevance to people from minority ethnic groups of research into cancer care and treatment.

The need to address structural barriers relates to the structural drivers of racism discussed in Sub-chapter 4.3.2. These are practical barriers such as employment, housing, immigration status and care-giving responsibilities, which all contribute to socioeconomic disadvantage often experienced by people from minority ethnic groups. In the cancer-related evidence reviewed there were relatively few suggestions to address these practical issues, but some studies did highlight as potential enablers support with transport, childcare, and advice on finances and welfare. It is plausible that tackling these structural barriers would contribute to reducing ethnic inequalities in access to healthcare, including cancer care. Several of the earlier enabler themes would address the structural, institutional and interpersonal racism discussed in Section 4.3. This issue will be covered further in Chapter 5.