Ethnic and racialised inequalities in cancer services: evidence review

5. Discussion and Policy Implications

5.1 Cancer Inequalities

The review’s exploration of cancer healthcare inequalities has addressed 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?’ The findings from this review show that ethnic inequalities are evident in lower uptake of cancer screening programmes, in some evidence relating to delayed diagnosis, and in consistently worse self-reported experience of cancer treatment. Inequalities are also shown in audits, analysis of concordance with cancer treatment guidelines and in literature on the use of different treatment methods. Inequalities relating to ethnicity are not evident in key metrics such as cancer incidence and cancer mortality, with specific exceptions such as higher mortality rates for prostate cancer among Black Caribbean and Black African men. However, factors such as cultural assimilation over time and associated increases in cancer risk factors could adversely influence these measures in the future.

5.2 Barriers and Potential Enablers

The review’s exploration of barriers and potential enablers relevant to ethnic inequalities has addressed:

• 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?’
• Research Question 3: ‘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?’

Causes of cancer inequalities include healthcare system barriers experienced throughout the cancer pathway, including communication barriers such as inadequate translation and interpretation facilities. Patients may experience barriers when healthcare systems fail to provide information and services that are accessible, culturally responsive, and trust-building. This includes limited support for health literacy, inadequate translation, and a lack of meaningful engagement with diverse communities’ values and experiences. These barriers could prevent or delay cancer diagnosis, potentially causing poor experience of cancer treatment and poor treatment outcomes. They could damage people’s confidence and trust in the healthcare system, which could discourage future uptake of healthcare. Experience of these barriers will vary between and within minority ethnic groups, and by generation, country of birth, and length of time in the UK. Some older people and some people less ‘acculturated’ to the UK are more likely to experience some barriers.

These findings are consistent with wider evidence, such as that reported by the RHO. Their Cost of Racism report ^[137] discusses barriers to access to screening programmes, primary and secondary care. Their report about Patient Experience and Trust in NHS Primary Care ^[138] reported survey findings of worse patient experience among minority ethnic participants, including not feeling listened to and their symptoms being ignored or dismissed. Both the RHO report on Patient Experience and Trust in NHS Primary Care and its evidence review into Ethnic Inequalities in Healthcare recommended better access to interpreters and to translated materials. A UK survey about health information commissioned by the Patient Information Forum^[139] also found that people from ethnic minorities were more likely to say that they did not feel listened to and that their views were not taken seriously. The report also cited wider evidence of persistent inequalities in access to information, particularly among people from minority ethnic groups and those with health literacy challenges. Accessibility of services, provision of accessible information and the importance of trust were also highlighted in relation to uptake of the COVID-19 vaccine among people from minority ethnic groups, reflecting similar barriers in wider health services^[140]. This wider evidence suggests that these issues are systemic in the healthcare system, and will consequently influence cancer care.

Healthcare system barriers are not experienced equally. Minority ethnic communities often face structural and systemic challenges that compound access issues and undermine trust in services. Equity-focused solutions embedded throughout the cancer care pathway are a means by which to tackle inequalities. Interventions highlighted in this evidence review include: i) ensuring clear, culturally grounded information for migrants, ii) targeted primary care initiatives to improve access to screening and early detection, iii) genetic testing for people at higher cancer risk, iv) and universal access to translation and interpretation services that meet both linguistic and cultural needs.

Other barriers identified by the review were that the healthcare system was insufficiently responsive to, and staff insufficiently knowledgeable about, the specific needs of people from minority ethnic groups. A clear finding to address these barriers was the need to enable healthcare staff to provide culturally competent healthcare. This finding is consistent with evidence from the RHO’s review into Ethnic Health Inequalities and the NHS24, which also highlighted the need to deliver culturally competent services, cultivate inclusive cultures, and ensure that there is diversity and representativeness at every level of the health system. As discussed earlier, the term ‘cultural humility’ is also used to describe how healthcare staff should work with a culturally and ethnically diverse population. A key element of cultural humility is the willingness to reflect, learn and engage with individuals from different cultural backgrounds. This would involve training and skills development for healthcare staff to take a more explicitly anti-racism approach and proactively address the healthcare needs of people from minority ethnic groups, including for cancer care. SG’s guidance to NHS Boards on developing anti-racism plans signposts to a digital learning course on Cultural Humility, which is hosted on the NHS Education for Scotland (NES) learning platform for health and social care workforce in Scotland. A review of anti-racist interventions to reduce ethnic disparities in healthcare in the UK commented that there was limited evidence that cultural competency training had reduced ethnic health inequalities, partly because high quality evidence was limited. It recommended that cultural competency training should be one component of a multi-level approach to dismantle institutional and systemic racism ^[141]. This recommendation is consistent with Scotland’s anti-racism approach discussed further below and would enable more culturally appropriate cancer care. In view of the limited evidence mentioned above, it would be useful to assess the impact of this training.

Patient perceptions of cultural under-representation among NHS staff was another barrier identified in this review. In terms of cultural under-representation, the RHO report on The Cost of Racism stated that a quarter of NHS staff were from a Black, Asian or minority ethnic background. However it noted that they experience discrimination and harassment from patients and colleagues, have worse chances of being promoted, and do not feel represented by their leadership. However, representation does not necessarily translate into awareness of the specific healthcare needs of people from minority ethnic groups. Wider evidence from the USA shows how healthcare staff training curricula content about race, ethnicity and racism was inadequate and inaccurate. This provides a further example of institutional drivers of racism, with learning that is relevant to the Scottish context. For example, one study considered that inadequate attention to ethnicity and racism could potentially contribute to staff overlooking diagnosis, withholding needed treatment, or delivering inequitable care^[142]. Another study argued that the misconception that race is a risk factor, rather than a risk marker, could contribute to the lower quality of care experienced by people from minority ethnic groups^[143]. A further study proposed the inclusion in medical education of a new approach termed ‘structural competency’, which would take account of structural determinants of health and potential non-medical mitigations^[144]. This evidence reinforces the need for healthcare staff training to include substantive content about anti-racism.

A key potential enabler highlighted in the review findings was the use of community-based approaches developed with and by people from minority ethnic groups. Such approaches should improve healthcare staff’s understanding of the needs of people from those groups, and engage those people in co-designing interventions. Interventions could include community-based events and use of community spaces, recruitment of community-based health workers from the target groups, involve trusted community and faith group messengers, and use minority ethnic and religious communication channels. This broad approach would be consistent with wider evidence and recommendations. Key messages in the RHO’s report into Ethnic Health Inequalities and the NHS24 included the need for “increased investment in community engagement work with Black and minority ethnic communities to develop and deliver culturally competent services - to build sustained and trusting relationships between services and communities” (p. 6). The King’s Fund (2024) publication on Tackling Health Inequalities^[145] also advocates for the NHS to work in partnership with communities in general. It noted that “listening to communities and dismantling hierarchical ways of working by sharing decision-making power will help to rebuild trust between the NHS and communities, inform the design of person-centred, culturally sensitive services, and in turn, reduce barriers to accessing care”. With trust a recurring theme in analysis of barriers and enablers in this review, co-design and community participation is important to build trust and relationships in interventions to tackle and reduce inequalities.

A review of anti-racist interventions to reduce ethnic disparities in healthcare in the UK found that community participation is needed in the design, delivery and evaluation of services; and that building trust and capacity for communities to participate can support efforts to reduce health inequalities. An SG literature review into Socioeconomic inequality and barriers to primary care in Scotland^[146] highlighted Scottish examples of tailored outreach interventions for people from specific minority ethnic groups, and emphasised the value of creating links between primary care and communities. Examples cited included a Community Health Worker (CHW) service, delivered by a third sector organisation, Minority Ethnic Carers of People Project (MECOPP), to provide training to Gypsy/Travellers to advocate for their community on health and social care issues. Findings from an external evaluation of this intervention were positive, with CHWs gaining the trust of the community, facilitating improved access to healthcare and building community capacity^[147]. This suggests that there would be benefits from initiatives of this kind, which focus on under-served groups with the greatest needs and build links between them and healthcare services. If the NHS takes a community-led approach to co-design interventions, developed using an equity-driven lens that adopts cultural humility, this would support the development of cancer care that is centred on communities but moves away from placing the burden of change on communities themselves. This focus should align with Scotland’s Health & Social Care Service Renewal Framework 2025-2035^[148], which sets out plans to shift the balance towards enabling a community-orientated approach to health and social care, with increased access to health and social care services and treatments in the community. This policy framework will inform the development of the next Cancer Action Plan.

Under-representation of people from minority ethnic groups in research relevant to cancer treatment was a key barrier identified in the review that is important to consider in future cancer policy development and implementation. Potential enablers to improve recruitment and retention of people from minority ethnic groups in clinical trials include culturally appropriate communication about the trials and other research, including use of translation and interpretation services. The RHO’s report on Ethnic Inequities in Genomic and Precision Medicine recommended diversifying research participation through increasing the ethnic diversity of population databases. This would also require improving the percentage of people in databases whose ethnicity is recorded; and ensuring that the coding of ethnicity is inclusive and consistent between different health services and electronic patient record systems. This issue is also discussed in the Data Quality section below. The RHO report also recommends ensuring that measures of risk are inclusive of different ethnic groups: this process would need to be undertaken with care to avoid embedding invisible ethnic inequalities.

5.3 Structural, Institutional and Interpersonal Drivers of Racism

The review’s consideration of the drivers of racism has addressed Research Question 2: ‘What evidence is there about the impact of structural, institutional and interpersonal drivers of racism on cancer healthcare inequalities?’ Findings show clear evidence that structural, institutional and interpersonal drivers of racism all contribute to cancer inequalities. Many of the issues discussed in the Barriers Sub-chapter 4.2 could be described as examples of how systemic racism in its broadest sense operates in the healthcare system, including in cancer care, although only a small proportion of the cited articles explicitly discussed or alluded to structural and other drivers of racism.

The specific structural barriers identified in this review, such as socioeconomic status, employment and housing, closely align with the social determinants of health. While these practical barriers could be experienced by anyone, many are more likely to be experienced by people from minority ethnic groups. This is shown, for example in the social consequences of COVID-19 as discussed in a report on Health Inequalities in Scotland. These findings are consistent with similar practical barriers outlined in the RHO report on the Cost of Racism. Its review into Ethnic Inequalities in Healthcare cited structural and system-wide issues which shaped the maternity care provided to migrant women. Its review of Patient Experience and Trust in NHS Primary Care compared survey responses of participants from ethnic minority groups to the responses of White British participants. It found that discrimination on the basis of ethnicity was reported by 25% of all participants and 51% of those who reported some form of discrimination.

The review found clear evidence of institutional racism and discrimination in healthcare settings, including in cancer care. Examples included negative attitudes and behaviours by healthcare staff towards people from minority ethnic groups, insufficient medical knowledge about breast cancer diagnosis and management for minority ethnic women, and institutionally inadequate responses to the language, cultural and religious needs of people from minority ethnic groups. The failure to implement targeted policy interventions or guidelines to address known ethnic inequalities in breast cancer diagnosis and outcomes was described by one study as “racism in action” (p. 6).

Findings about interpersonal drivers of racism included evidence of racial bias, microaggressions and negative stereotyping, which negatively affected people’s experience of cancer care. Examples of bias and microaggressions included dismissal of symptoms, delayed diagnosis or misdiagnosis attributed to racial bias, rudeness, and more positive behaviour towards White people compared with those from minority ethnic groups. Negative stereotypes included perceptions by people from minority ethnic groups that they were viewed as aggressive or over-assertive if they asked too many questions about their care, and negative assumptions about patients’ perceived socioeconomic status and ability to speak English based on their ethnicity.

In terms of structural drivers of racism in Scotland, Scotland's Population Health Framework published in 2025 takes a public health approach to prevention, recognising three types of prevention needed to address poor health outcomes, all of which are relevant to cancer care.

• Primary prevention tries to stop problems happening, either through actions at a population level that reduce risks or those that address the cause of the problem. An example relevant to cancer is tobacco control.
• Secondary prevention focuses on early detection of a problem to support early intervention and treatment or reduce the level of harm. Examples relevant to cancer are screening and early detection.
• Tertiary prevention tries to minimise the harm of a problem through careful management. This is relevant to cancer treatment.

The Framework sets out initial actions across five key interconnected prevention drivers of health and wellbeing:

• Prevention Focused System
• Social and Economic Factors
• Places and Communities
• Enabling Healthy Living
• Equitable Access to Health and Care

The driver ‘Social and Economic Factors’ sets out to improve the social and economic factors that support better health and reduce inequalities. Actions within this driver will build on existing policies and strategies, and include tackling poverty. Progress on this driver would contribute to tackling structural drivers of racism and the specific barriers discussed in this review; and to reducing avoidable inequalities in access to healthcare generally, including access to cancer care. The five drivers are informed by the IHE’s eight Marmot principles and The King’s Fund four pillars of population health^[149]. The Marmot principles include “tackle racism, discrimination and their outcomes”.

Institutional and interpersonal drivers of racism within Scotland’s healthcare system will be addressed through the anti-racism approach and pursuit of racial equity which SG is seeking to embed across the entire health and care system. This was discussed in the earlier Background Chapter 3 which highlighted the statement on anti-racism by Scotland’s Cabinet Secretary for Health and Social Care, and the guidance to NHS Boards on developing anti-racism plans. It will be important to embed this approach fully in cancer care policy development and implementation, to tackle racism and address the systemic barriers experienced by people from minority ethnic groups which have been identified in this review. This could have a positive impact on secondary and tertiary cancer prevention.

5.4 Intersectionality

The Background Chapter 3 discussed the concept of intersectionality and how intersecting characteristics combine to exacerbate disadvantage; and evidence about intersectionality in Scotland. A number of the cancer-related studies reviewed commented on intersectionality, with several discussing the known intersection between ethnicity and socioeconomic status. These studies are highlighted here given the importance of addressing intersectionality when considering ethnic inequalities in cancer care.

A systematic review into barriers to cancer screening uptake among Black, Asian, and Minority Ethnic women in the UK highlighted low socioeconomic status as a key barrier to accessing screening. A study exploring the experiences and health service use of Roma, Gypsies and Travellers noted that while their incidence of cancer was unknown because of the absence of routine data collection, factors likely to increase their lifetime risk included their predominantly low socioeconomic status. Some participants in another study felt that class discrimination could combine with racial stereotyping, resulting in worse outcomes for working class people from an minority ethnic background84. A study with South Asian breast cancer patients noted that healthcare for ethnically diverse populations occurs against a backdrop of socioeconomic disadvantage, institutional racism and social exclusion. Participants in CRUK’s 2024 Cancer Awareness Measure for Scotland^[150] asked respondents about specific barriers to seeking help for a health concern. Findings showed that respondents from a minority ethnic background identified more barriers compared with White respondents; and people from less affluent socioeconomic backgrounds identified more barriers compared with those from more affluent backgrounds. A limitation of this analysis is that there were fewer than 100 survey responses from people from minority ethnic backgrounds, so this finding should be treated with caution. As discussed earlier, migrants without recourse to public funds experience socioeconomic disadvantage which adversely affects their social determinants of health and results in inadequate access to healthcare. This review has also discussed evidence of disadvantage being compounded by intersecting characteristics such as ethnicity and gender or ethnicity and age. It would be important to take account of such intersecting factors when developing and implementing policy interventions to tackle ethnic health inequalities.

5.5 Data Quality

The guidance for Scotland’s NHS Boards on developing anti-racism plans emphasises the need to improve healthcare data quality in relation to ethnicity. This would include reducing the inappropriate use of aggregate data and exploring the experiences of people from specific minority ethnic groups and sub-groups. More granular ethnicity data, which included people’s migration history, faith, language and generation, would support more meaningful service design and evaluation. PHS has a programme of work to improve data collection on and monitor racialised health inequalities. Its latest report, published in 2023, provided examples of translating evidence into action on improving vaccine uptake among minority ethnic groups and reducing inequalities among the Gypsy, Roma and Traveller community. The report also highlighted ongoing work to improve understanding of why equalities data are collected; and to improve the consistency and level of recording of ethnicity in routine health datasets. This work is also discussed in Scotland’s Race Equality Framework Progress Review. Scotland’s 2025 Population Health Framework reports plans to develop a Healthcare Inequalities Action Plan, whose actions will include ensuring the routine collection, analysis, reporting and use of healthcare inequalities data by key variables, including race and ethnicity, to enable better accountability. Continued attention to improving healthcare data quality will be an important enabler in developing a more detailed understanding of ethnic inequalities in access to cancer care and cancer outcomes.

5.6 Policy Implications

The policy implications of this review are set out below. They include overarching issues which are not specific to cancer inequalities but are highly relevant to them, as shown in the findings from this review. They also cover implications which are directly relevant to the next Cancer Action Plan, in terms of tackling ethnic inequalities in access to cancer care, patient experience and cancer outcomes. They would need to be adapted to different ethnic groups and to different local contexts.

Overarching Issues

• Structural Racism: progress on planned actions to address the social and economic determinants of health, as set out in Scotland's Population Health Framework, would contribute to tackling structural racism and the specific barriers discussed in this review; and to reducing avoidable inequalities in cancer care.
• Institutional and Interpersonal Racism: delivery of SG’s national anti-racism agenda, including through local NHS Board anti-racism plans, will contribute to raising the profile of these issues and would address ethnic inequalities experienced by healthcare patients, including in cancer care. This will be supported by work to improve data quality as discussed below.
• National government policy development in relation to cancer care: Scotland’s Cancer Strategy highlighted the need to reduce inequities in access to cancer services, experience and outcomes for individuals and groups experiencing socioeconomic inequalities, as well as people experiencing racism and discrimination. The actions to address structural, institutional and interpersonal drivers of racism described above would contribute to reducing such inequities.
• Cultural Humility training for health and social care staff: training and skills development for healthcare staff should enable them to take a more explicitly anti-racism approach and proactively address the healthcare needs of people from minority ethnic groups, including for cancer care. Exploring uptake of the NHS Education Scotland cultural humility training and post-training evaluation would inform the future development of this approach.
• Data quality: ongoing work to improve the level and consistency of recording of ethnicity in routine healthcare and related records, and to reduce the inappropriate use of aggregate data, would provide a more granular understanding of ethnic health inequalities and inform the design of targeted interventions to address them. Recording of ethnicity in the Scottish Cancer Registry is improving: this will enable future improvement of reporting on ethnic inequalities.

The following points are relevant to the Cancer Strategy’s cross-cutting ambition to tackle health inequalities. These will be considered in the context of the next Cancer Action Plan to determine any relevant actions to be taken forward.

• Addressing healthcare system factors which present barriers to access. This could involve the development of accessible, culturally resonant health information for all minority ethnic communities, including those newly navigating the NHS, such as asylum seekers, people with limited English proficiency, or those excluded from mainstream communication channels. It could cover the benefits of early GP registration, and information on the benefits of cancer screening and how to access it. Relevant policy actions could also involve targeted interventions in primary care to improve access to cancer screening, and to improve access to genetic testing for people at higher cancer risk.
• Enabling healthcare staff to provide culturally competent care. This could involve appropriate training and skills development, such as the cultural humility training highlighted above. Policy action in this area could lead to a greater focus on and understanding of the needs of people from specific minority ethnic groups, including migrants; and better understanding of how cancer manifests among people from different minority ethnic groups.
• Delivery of culturally appropriate policies and services. This could involve the development of interventions to improve screening uptake and early symptomatic presentation, including a choice of female or male healthcare staff on request. It could also involve improved provision of or signposting to ethnically appropriate cancer treatment requirements: e.g. wigs, prostheses and lymphoedema sleeves to match skin colour. Evidence indicates that the development of local advocacy services and support networks for cancer patients could be relevant to improving people’s experiences and outcomes.
• Development of effective health communication. This would recognise that emotional responses and belief systems are shaped by historical neglect, lived experiences of discrimination, and structural barriers to care. Co-producing materials with communities would build trust, affirm dignity, and provide hopeful, accessible pathways to support.
• Delivery of culturally appropriate awareness-raising and communication. This could include the increased representation of people from minority ethnic groups in promotional materials. It could involve local trusted messengers, such as patient navigators and community leaders, and use minority ethnic and religious community spaces and communication channels. It could include improved communications for people whose first language is not English, including signposted access to translated written materials and interpreter services and the development of visual materials.
• Support and funding for community-based and co-designed interventions. Evidence suggests that such approaches could help build trust between the NHS and local communities. They could support uptake of cancer screening, encourage early symptomatic presentation to primary care and support patients during treatment. Interventions could involve community-based health workers with a shared ethnic and cultural background and peer support networks, and use interactive community-based events.
• Intersectionality. Embedding intersectionality into cancer policy design, service delivery, and evaluation recognises how the combined effects of racism, poverty, gender inequality, immigration status, and other structural barriers compound disadvantage across the cancer care pathway. This means moving beyond a one-size-fits-all approach to equity and ensuring targeted interventions for groups facing multiple layers of exclusion, including undocumented migrants, Black women from low-income backgrounds, and older adults from minority ethnic groups.