Ethnic and racialised inequalities in cancer services: evidence review

3. Background: Wider Context and Scotland’s Policy Context

3.1 Wider Context

This chapter provides wider context for the Findings which follow in Chapter 4, which discusses evidence about cancer inequalities and barriers experienced by people from minority ethnic groups along the cancer pathway. However, those findings must be understood within the context of different levels of racism; the impact of racism on health; and intersectionality.

3.1.1 Levels of Racism

Several frameworks explain the different levels at which racism operates and its impact on people’s health ^[14],[15]. This review will follow a framework comprising the three levels below and which emphasises the inter-relationships among them^{[16], [17]}. It therefore provides a useful practical context for the research questions of this review.

• Structural racism (macro level): reflected in disadvantaged access to physical, economic, and social resources, resulting in, for example, deep and persistent socioeconomic inequalities.
• Institutional racism (meso level): reflected in routine processes and procedures within institutional settings that translate into actions that negatively shape the experiences of people from minority ethnic groups. Jones (2000) notes that “institutionalised racism is often evident as inaction in the face of need” (p. 1212).
• Interpersonal racism (micro level): everyday experiences of racism by people from minoritised ethnic groups, ranging from everyday slights and microaggressions to verbal or physical abuse.

The framework above has been adapted and cited by the RHO and the Institute of Health Equity (IHE) ^[18]. The RHO Rapid Evidence Review states that “ethnic inequalities in access to, experiences of, and outcomes of healthcare are longstanding problems in the NHS, and are rooted in experiences of structural, institutional and interpersonal racism” (p.10). This statement highlights that ethnic inequalities are located in the healthcare system and in wider society, rather than in the ethnic groups and individuals experiencing them.

Cultural racism is also discussed by some writers: this is the ideology of the inferiority of minority ethnic groups in wider society’s values, language, imagery, symbols and unstated assumptions. It can manifest through negative stereotyping and implicit bias. It can result in internalised racism, whereby some people from minority ethnic groups accept such negative stereotypes as true. There is evidence of an association between internalised racism and negative health outcomes^[19].

3.1.2 The Impact of Racism on Health

There is robust evidence that racism negatively affects health in multiple ways. For example, one study analysed data from the Understanding Society UK Household Longitudinal Study, covering respondents’ experiences of harassment or abuse due to their ethnicity, nationality, or religion; their mental and physical health functioning scores; and their socioeconomic status as measured by household income. The study found the enduring effect of racism, which operates both directly at the time of experiencing racism, as well as indirectly via lower income and poorer health over time.

A 2019 systematic review of mainly US evidence explored the ‘weathering hypothesis’ as an explanation for racial disparities in health^[20]. This hypothesis “states that chronic exposure to social and economic disadvantage leads to accelerated decline in physical health outcomes and could partially explain racial disparities in a wide array of health conditions” (p.1). Most studies included in the review found evidence that supported this hypothesis. Weathering patterns were observed for age, socioeconomic disadvantage and biological or physiological mechanisms, including responses to stress. The review acknowledged that none of the studies reviewed considered discrimination, which could explain racial or ethnic differences in weathering patterns. This analysis of racial disparities, including the need to consider discrimination alongside social and economic disadvantage, is relevant to policy that seeks to reduce health inequalities.

The IHE’s 2024 report on Structural Racism, Ethnicity and Health Inequalities in London drew on relevant evidence to explain how racism affects health in three interconnected ways:

1. Experiencing racism directly damages physical and mental health.

2. Racism may be a cause of socioeconomic disadvantage and adverse exposure to the social determinants of health which undermine health.

3. Racism damages health through the operation of the health care system and other services.

It argues that they are all manifestations of structural racism, which leads to institutional and interpersonal racism. The report cited evidence that the direct health impacts of racism included psychological distress, poorer self-rated health and hypertension. It argued that exposure to racism over the lifecourse, together with the anticipatory stress of possible future racist encounters, is likely to have long-term effects on the mental health of people from minority ethnic groups.

3.1.3 COVID-19 and Structural Racism

The effects of the COVID-19 pandemic illustrated the impact of structural racism on health outcomes among people from minority ethnic groups. Notably, the IHE’s COVID-19 Build Back Fairer review ^[21] highlighted high COVID-19 mortality rates among British people who self-identified as Black, Bangladeshi, Pakistani and Indian. These disparities were linked to poor housing, low-paid work, and crowded living conditions, all shaped by long-standing structural inequalities. The review referred to structural racism as the “cause of the causes of the causes” of poor health (p. 7), demonstrating the close connection between inequity and the social determinants of health. The World Health Organisation’s Commission on the Social Determinants of Health originated the phrase “causes of the causes”, or “the fundamental global and national structures of social hierarchy and the socially determined conditions these create in which people grow, live, work, and age” (p.1153) ^[22]. The concept of the social determinants of health aligns well with the description of structural racism in the framework above.

3.1.4 Intersectionality

In any consideration of racism and ethnic inequalities, it is important to consider the concept of intersectionality. This term was coined by Kimberlé Crenshaw in 1989 to describe the combined effects of racism and sexism experienced by Black women^[23]. The concept of intersectionality has since evolved to describe the way in which people’s multiple and overlapping forms of disadvantage, due to intersecting characteristics such as gender, ethnicity, geography and socioeconomic status, interact with and compound each other to create unique patterns of oppression and disadvantage that intensify health inequalities ^[24],[25]. The IHE contends that intersections with other dimensions of exclusion can amplify the effects of racism on health18. In the context of cancer, one study describes intersectionality as where “overlapping social identities—such as age, ethnicity, gender, and socioeconomic status—combine to create unique and compounded disadvantages in accessing and receiving quality healthcare” (p.1) ^[26]. As such, any consideration of inequalities and barriers experienced by people from minority ethnic groups should take account of the intersecting inequalities and disadvantages which they experience.

3.1.5 Ethnicity and Data Quality

While the COVID-19 pandemic highlighted inequalities in outcomes amongst people from minority ethnic groups, it also drew attention to deficiencies in the quality of ethnicity data in healthcare records and analysis. Key issues included the low level of recording of ethnicity data and the inconsistency of data that was recorded^[27].

The RHO and the IHE also highlighted the need for data and analysis to be disaggregated as far as possible, to understand which specific ethnic groups are most affected by inequalities, in what contexts, and their experiences and needs. Aggregated data could also lose the nuances of differences within ethnic groups, and inter-generational differences. One cancer-related study highlights that ”current datasets often lack the necessary granularity to reflect the full diversity of the population, hindering the development of effective interventions” (p.9).

Work in Scotland to improve data quality is discussed in Section 3.2.4.

3.2 Scotland’s Policy Context

3.2.1 Introduction

This section discusses how the wider context considered above has informed SG’s policy agenda on anti-racism and intersectionality; the relationship between ethnicity and poverty in Scotland; and Scotland’s Cancer Strategy (2023 to 2033), which effectively established the requirement for this evidence review.

3.2.2 The Scottish Government’s Anti-Racism Policy Agenda

SG’s Race Equality Framework for Scotland (2016 to 2030) ^[28] is consistent with the understanding of the structural, institutional, and interpersonal levels of racism, as set out in Section 3.1.1. Scotland’s framework states that “no-one in Scotland should experience disadvantage due to structural racism or discrimination on the grounds of colour, nationality, ethnicity or national origin” (p.8). Its 2021 immediate priorities plan acknowledges the need to see racism as a structural issue; and that “understanding racism and taking a truly anti-racist position means acknowledging the existence of formal and informal structural, institutional and cultural processes that place minority ethnic and migrant groups at a disadvantage within Scotland in relation to the majority” (p.4)^[29]. The framework’s key principles include “acknowledging that racial inequality is a product of discrimination and disadvantage” (p.11). A Progress Review published in 2023 acknowledged that addressing racism requires “systemic change that addresses "baked-in" racism within Scotland’s economic, political, social and cultural institutions and structures” (p.6) ^[30]. SG has also published an evidence synthesis on the concept of intersectionality^[31]. It includes discussion of how it can be applied to policy-making and analysis and provides some spotlight examples. Anti-racism and intersectionality are therefore central to SG’s policy agenda.

Early in the COVID-19 pandemic, in response to evidence of higher risks faced by people from migrant and minority ethnic communities, Scotland’s Expert Reference Group on COVID-19 and Ethnicity was established. In 2020 it published initial advice and recommendations ^[32] which acknowledged the existence of formal and informal structural, institutional and cultural processes that placed minority ethnic and migrant groups at a disadvantage within Scotland in relation to the majority population. This group highlighted the importance of improving awareness and understanding of structural, institutional and individual racism to address the fundamental relationship of systemic issues to inequalities. It also acknowledged the absence of high-quality population-based data on ethnicity, which hampered understanding of ethnic variations in COVID-19 and its outcomes. This reinforced the need discussed above to address structural racism to tackle ethnic inequalities and disadvantage, as well as to improve the quality of ethnicity data as discussed in Section 3.2.4.

Following the pandemic, in September 2024, Scotland’s Cabinet Secretary for Health and Social Care issued a statement on anti-racism ^[33]. This acknowledged that racism persists in society and within Scotland’s NHS and social care services. It recognised racism as a significant public health challenge for Scotland and a key cause of health inequalities. It also set out plans to take a firm anti-racism approach to the improvement of Scotland’s services. This included a requirement for all NHS Boards to develop and deliver against their own anti-racism plans, providing practical guidance ^[34] on what a strong anti-racism plan would look like. This reflected the commitment in SG’s Programme for Government (2024-2025)^[35] (PfG) to working with partners across the public and third sectors to embed anti-racism and advance the race equality framework.

Tackling racism within Scotland’s health and social care services will contribute to fulfilling the priority commitment of ‘High Quality and Sustainable Public Services’ in SG’s 2025-26 PfG^[36]. In the section on ‘Ensuring Equality’, the PfG acknowledges that while the impacts of poverty are felt widely, they are also felt disproportionately, with minority ethnic communities among the groups which experience higher levels of poverty. The PfG commits to taking action to make Scotland a fairer and more equal country for everyone. Planned actions include launching the Anti Racism Observatory for Scotland, which will work with Government, public bodies and communities to tackle systemic racism in Scotland.

In support of the PfG’s broad focus on Ensuring Equality, Scotland’s ten-year Population Health Framework ^[37], published in June 2025, sets out a framework to tackle the root causes of ill health, reduce health inequalities and improve health equity in Scotland. It recognises that health is shaped by a range of social, economic and environmental factors, or the social determinants of health. Progress against a variety of indicators will be monitored. These are structured around the established ‘Marmot Eight’ principles to improve health equity ^[38]; which include to ”tackle racism, discrimination and their outcomes” (p. 2). A Healthcare Inequalities Action Plan to be developed will address among other things, stigma and discrimination, and racialised health inequalities.

3.2.3 Scotland’s Cancer Strategy

Reflecting SG’s policy focus on tackling racism, its ten-year Cancer Strategy (2023 to 2033) explicitly cited Scotland’s race equality framework and its Expert Reference Group on COVID-19 and Ethnicity. As discussed in the Introduction, the Strategy highlighted that among the people who experience health inequalities and inequities of access are people from minority ethnic groups and/or those experiencing racism and discrimination. Under its ‘Tackling Health Inequalities’ ambition, the Strategy committed to “reduce inequities in access, experience and outcomes for individuals and groups experiencing socioeconomic inequalities, racism and discrimination… by improving the way we collect and use data and evidence to monitor equity of access, experience and outcomes for marginalised and minoritised groups, and targeting action where it is needed most” (p. 47). It was recognised that SG did not have a comprehensive understanding of the relevant evidence base about ethnic inequalities, which informed the decision to undertake this evidence review.

3.2.4 Ethnicity and Data Quality in Scotland

Scotland’s Expert Reference Group on COVID-19 and Ethnicity highlighted that the COVID-19 pandemic had shown the need for ongoing monitoring of health data by ethnicity, noting that poor ethnicity data could hide ethnic inequalities in health. Its initial advice and recommendations addressed the need to improve the quality of ethnicity data in routine health datasets. This included improving ethnicity coding, for example, by making ethnicity a mandatory data field in health databases. Other recommendations included improving the collection of ethnicity data from patients, for example, by collecting it at the time of their GP registration. PHS is undertaking a programme of work to improve data collection and monitoring of racialised health inequalities. Its latest report ^[39] published in 2023 discussed ongoing work to improve understanding of why equalities data is collected; and to improve the consistency and level of recording of ethnicity in routine health datasets.

3.3 Ethnicity and Intersectionality in Scotland

There is evidence of intersection or overlap between ethnicity, poverty and other structural barriers in Scotland. The over-representation of people from minority ethnic groups living in deprived areas and in poverty constitutes evidence of structural racism. Some summary evidence is presented below.

A 2021 briefing by the Joseph Rowntree Foundation^[40] reported that people from ethnic minorities in Scotland had been at significantly higher risk of poverty compared with White people; and experienced multiple structural inequalities including in relation to economic activity, pay, job insecurity and housing costs. The briefing also highlighted the need for robust ethnicity data which could inform an understanding of the interaction and scale of these drivers of poverty.

A 2022 report into Health Inequalities in Scotland^[41] discussed the unequal social consequences of COVID-19, highlighting that people from minority ethnic groups were more likely to be working in insecure jobs, putting them at higher risk of job loss and falling into poverty.

A 2024 briefing by the Scottish Health Equity Research Unit^[42] compared socioeconomic and health findings from Scotland’s 2011 and 2022 Censuses. It found that the proportion of people from minority ethnic backgrounds and of the migrant population living in deprived areas increased between 2011 and 2022. People from Black African and Polish backgrounds were the most likely to live in deprived areas, with people from Bangladeshi, Pakistani, and Other Asian backgrounds more likely to live in deprived areas in 2022 compared with 2011. In 2022, people living in deprived areas were more likely than the general population to report poor health, be economically inactive, to have no qualifications and to live in overcrowded homes.

In 2024 the Coalition for Racial Equality and Rights (CRER) in Scotland published analysis of Ethnicity and Socioeconomic Deprivation in Scotland^[43], drawing on data from Scotland’s 2022 Census and the Scottish Index of Multiple Deprivation 2020. It found that Black and minority ethnic people in Scotland were more likely to experience socioeconomic deprivation compared with White Scottish/British people; and that they were disproportionately concentrated in Scotland’s most deprived areas. They noted that structural racism contributed to Black and minority ethnic people experiencing a wide range of interconnected barriers and disadvantages, affecting their health, education, employment, access to housing and experiences of crime and the justice sector.

3.4 Conclusion

Chapter 3 has explained the wider context of systemic racism; the impact of racism on health; and how the concept of intersectionality helps explain how structural barriers can compound each other to exacerbate health inequalities experienced by people from minority ethnic groups. It has also discussed the Scottish context, including SG’s anti-racism policy agenda and the Cancer Strategy, from which the need for this review derives. It sets the scene for the Findings in Chapter 4.

When considering the findings about barriers to accessing cancer care experienced by people from minority ethnic groups, it is important to avoid pathologising or blaming people from these groups, especially given that some barriers will also be experienced by people from other ethnic groups. There will also be differences between and within minority ethnic groups. The review’s findings about barriers and enablers should be viewed through the lenses of levels of racism and intersectionality as set out above. This position emphasises that health inequalities are located in the healthcare system and in wider society, rather than in the ethnic groups and individuals experiencing them.