Chapter 10. Health inequality monitoring on the path to a just society

Overview

Rectifying health inequities is a matter of human rights and social justice and a cornerstone of global development agendas. Yet, across global to local levels, social structures, institutions and cultural norms contribute to shaping the environments that create and perpetuate injustices. Recognizing that “social injustice is killing people on a grand scale”, the WHO Commission on Social Determinants of Health brought attention to the societal conditions and upstream forces that impede progress to achieve a more just world (1). A justice-oriented approach to global health necessitates moving beyond health outcomes to address unfair aspects of society within and beyond health-care systems (1). Critically, it also means upholding and respecting human rights.

Injustices influence the health of individuals and populations in different ways, directly and indirectly, and may have different implications across different stages of the life course and with varying levels of exposure. For example, people from racialized and ethnic minorities in the United States of America report poorer health status and access to recommended health care (2). Experiencing social injustice at critical periods, such as early childhood, can have a strong bearing on later life health and recommended health care (3).

Disadvantage and risk can accumulate over time. For example, people with adverse childhood circumstances are more likely to have greater exposure to risk behaviour, to engage in risk behaviours, and to experience compromised health (4). Disadvantage may exhibit transgenerational transmission, with prolonged effects of stress on the physiology of the body and declines in physical health attributable to chronic exposure to social and economic disadvantage or discrimination perpetuated by unequal societal norms and structures. Such effects have been evident in groups such as racialized and ethnic minorities and First Nations or Indigenous Peoples (3, 5, 6).

The path towards a just society requires acknowledgement and accountability to understand and address the structural roots of inequities, including recalcitrant social injustices linked to discrimination, colonialism and corruption. Recognizing the pervasiveness and complexity of such forces – and the importance of moving forward on this path – this chapter aims to demonstrate how health inequality monitoring can play a role in the advancement of societal equity and justice.

At the core of justice are the concepts of human rights, freedoms and entitlements that belong to all human beings (7). States have a legal obligation to counter and redress violations of human rights, including those that may have their roots in history and may continue to cause and perpetuate societal injustice. After introducing foundational concepts related to human rights, this chapter focuses on three selected themes – discrimination, colonialism and corruption – with brief descriptions showing how these themes intersect with health inequalities and examples indicating the role monitoring could play in driving and tracking their redressal. The themes and examples featured in this chapter are intended to be illustrative and serve as a starting point for further exploration; they are not meant to be comprehensive in scope or depth.

Human rights: a foundation for health equity

Human rights are moral aspirations based on the inherent dignity and equality of the human person. They are codified through international and regional human rights treaties (conventions), international customary law and national laws. Characteristics of human rights include that they are universal and inalienable, indivisible and interdependent, equal and nondiscriminatory. All humans have the right to the highest attainable standard of health – both physical and mental – to which all countries have a legal obligation (Box 10.1).

BOX 10.1. Human rights obligations for health and health equity

A human rights-based approach specifically aims to realize human rights, including the right to health. The Universal Declaration of Human Rights was adopted by the United Nations in 1948, enshrining the basic freedom and equality in dignity and rights of all humans (8). All WHO Member States have ratified at least one international human rights treaty that includes the right to health.

The WHO Constitution states that “the enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition” (9). To realize this right, states must ensure access to health services that are available, accessible, acceptable and of good quality. States must also remove obstacles to some of the underlying determinants of health, such as safe and potable water, sanitation, food, housing, health-related information and education, and information about health problems affecting a person’s community (10).

More specifically, states have the obligation to respect, protect and fulfil the right to health (11, 12). States should respect the right to health, meaning they should refrain from directly or indirectly interfering with the right to health. For example, states should not restrict access to health-care services, censor or misrepresent health information, or impose discriminatory practices that affect the care-seeking of any group. The obligation to protect requires that proactive efforts be made to prevent third parties from interfering with the right to health. This includes ensuring privatization does not threaten the availability or financial accessibility of services. In fulfilling the right to health, states should set up appropriate measures – legislative, administrative, promotional or other – to ensure well-being, tackle causes of ill health, and ensure health facilities, goods and services are available, accessible, acceptable and of good quality, without any discrimination.

Some of the most critical human rights principles that matter for health are nondiscrimination and equality. This means ensuring multiple reasons for exclusion are addressed and that information, services and resources are not intentionally or unintentionally denied to any population subgroups (13). Another principle is participation, such that health service users, communities and civil society play a role in planning, deciding, monitoring and budgeting for health across levels of the health and other systems. The concept of a dignified life encompasses the principles of self-determination and freedom to live a life that “one has reason to value” (14). Grounded in the respect for human dignity and the right to health, the capability to be healthy emphasizes the moral entitlement and equitable capability to live a normal length of lifespan and achieve a cluster of capabilities and functionings (15).

Accountability is another key human rights principle. Regulatory institutions and instruments are part of ensuring accountability to human rights obligations. Health inequality monitoring approaches discussed throughout this book can be used to monitor the realization of human rights. WHO has prioritized lists of indicators for monitoring human rights in certain programmes and topics and has provided guidance on how monitoring can be applied as part of a human rights analysis. For example, in the area of reproductive health, the WHO report Ensuring human rights within contraceptive programmes: a human rights analysis of existing quantitative indicators provides a methodology for identifying indicators that can be used in a rights analysis of contraceptive programmes, highlighting 12 prioritized indicators (16).

Inequality monitoring may explore how health-related human rights (outcome indicators) are realized across population subgroups. Such approaches may complement human rights monitoring across other domains, including structural indicators, which provide information on whether a state has ratified international human rights treaties, and process indicators, which measure the realization of the obligations that flow from ratifying these treaties (e.g. whether populations experiencing disadvantage are covered by health programmes) (17). In many countries, national human rights institutions and civil society organizations have played significant roles in identifying violations of health-related rights, including forms of discrimination that require redress and advocating for rights-based approaches. Box 10.2 lists further reading on human rights and health.

BOX 10.2. Further reading on human rights and health

Beyrer C, Kamarulzaman A, Isbell M, Amon J, Baral S, Bassett MT, et al. Under threat: the International AIDS Society–Lancet Commission on Health and Human Rights 2024;403(10434):1374–1418. doi:10.1016/S0140-6736(24)00302-7.

Braveman P. Social conditions, health equity, and human rights. Health Hum Rights. 2010;12(2):31–48.

Gruskin S, Grodin M, Tarantola D, Annas G, editors. Health and human rights in a changing world. New York: Routledge; 2013.

Montel L, Ssenyonga N, Coleman MP, Allemani C. How should implementation of the human right to health be assessed? A scoping review of the public health literature from 2000 to 2021. Int J Equity Health. 2022;21(1):139. doi:10.1186/s12939-022-01742-0.

Human rights. Geneva: World Health Organization (https://www.who.int/health-topics/human-rights#tab=tab_1, accessed 19 June 2024).

Part of contextualizing the results of health inequality analyses and determining how to act upon them should consider how relevant human rights are protected, promoted, enforced or violated.

Discrimination

Routinely described as a social or psychosocial determinant of health (18), discrimination is defined as “any unfair treatment or arbitrary distinction based on a person’s race, sex, religion, nationality, ethnic origin, sexual orientation, disability, age, language, social origin or other status” (19). It may occur as an isolated event impacting a single person or group of people who share a similar circumstance, or it may be manifest through harassment or misuse of power. Discrimination is a human rights violation. Stigma, a broader term, refers to the negative attitudes, beliefs or behaviours about or towards a group of people because of their situation in life (20). Discrimination can result from internalized stigma or due to interpersonal, systemic or structural barriers (2).

Discrimination can affect health in diverse ways. Discriminatory laws and policies can have negative impacts on health-care access for certain populations. Systemic and structural discrimination have implications on social determinants of health, including education, employment and housing. Systemic issues within health systems, such as inequitable distribution of resources, can result in poorer health-care access and health outcomes for populations experiencing disadvantage. Biased or discriminatory health-care provider attitudes and practices can affect access and quality of care. The experience of discrimination at one health facility or in one facet of life may affect care-seeking and risk behaviours related to health throughout the life course. In 2017, the United Nations issued the Joint statement on ending discrimination in health care settings, recognizing discrimination as a major barrier to achieving the United Nations 2030 Sustainable Development Agenda (21).

Health inequality monitoring may help quantify and track cases of discrimination by incorporating indicators that overtly measure discrimination, such as accepting or discriminatory attitudes. It can be used to assess whether there are inequalities based on the prohibited grounds of discrimination, such as age, ethnicity or sex. Additionally, analyses may be conducted to measure compounded vulnerability and advantage to get a sense of how dimensions may act cumulatively (see Chapter 25). Box 10.3 lists further reading on discrimination and health.

BOX 10.3. Further reading on discrimination and health

Declaration on Racism, Discrimination, Xenophobia and Related Intolerance against Migrants and Trafficked Persons. Tehran: Asia-Pacific NGO Meeting for the World Conference Against Racism, Racial Discrimination, Xenophobia and Related Intolerance; 2001 (https://www.hurights.or.jp/wcar/E/tehran/migration.htm 19 June 2024).

Braveman PA, Arkin E, Proctor D, Kauh T, Holm N. Systemic and structural racism: definitions, examples, health damages, and approaches to dismantling. Health Affairs. 2022;41(2):171–178. doi:10.1377/hlthaff.2021.01394.

Frontier dialogue consultations on addressing structural racial and ethnicity-based discrimination: key action areas for COVID-19 recovery plans. Geneva: World Health Organization; 2021 (https://www.who.int/publications/m/item/frontier-dialogue-consultations-on-addressing-structural-racial-and-ethnicity-based-discrimination, accessed 19 June 2024).

Joint United Nations statement on ending discrimination in health care settings. Geneva: World Health Organization; 2017 (https://iris.who.int/handle/10665/259622, accessed 23 September 2024).

Gender and health. Geneva: World Health Organization (https://www.who.int/health-topics/gender, accessed 19 June 2024).

Improving LGBTIQ+ health and well-being with consideration for SOGIESC. Geneva: World Health Organization (https://www.who.int/activities/improving-lgbtqi-health-and-well--being-with-consideration-for-sogiesc , accessed 19 June 2024).

Tackling structural racism and ethnicity-based discrimination in health. Geneva: World Health Organization (https://www.who.int/activities/tackling-structural-racism-and-ethnicity-based-discrimination-in-health, accessed 19 June 2024).

Example: HIV-related discrimination

People living with HIV often face discrimination due to their HIV status, which may be exacerbated due to characteristics such as age, economic or social status, ethnicity, gender, sexual orientation or gender identity, or other health conditions (22). HIV-related discrimination can affect the enjoyment of rights, and may lead to physical abuse, denial of health or social services, or denial or loss of employment or education opportunities. HIV-related discrimination may be manifest in the criminalization of HIV nondisclosure, exposure and transmission, or in measures such as HIV-related travel restrictions, mandatory testing or employment restrictions (23).

HIV-related stigma refers to the negative beliefs, feelings and attitudes towards people living with HIV, groups associated with people living with HIV (e.g. the families of people living with HIV), and other key populations at higher risk of HIV infection. HIV-related discrimination refers to the unfair and unjust treatment (act or omission) of an individual based on their real or perceived HIV status (24).

HIV-related discrimination has negative implications for individuals (including impacts on health-care seeking behaviours, access to prevention and treatment services, treatment adherence, and mental health and well-being) and for the wider attainment of public health goals. For example, fear of stigma and discrimination may deter people from being tested for HIV (25, 26). Self-stigma or stigmatization by family members, health-care providers or others may lead to stress, anxiety, social isolation or reduced quality of life. HIV-related discrimination may result in other social and economic barriers to access to services.

Inequality monitoring in HIV can improve understanding on how discrimination – and its impact – is experienced within populations. Over the past decades, various organizations have advanced efforts to monitor discrimination experienced by people living with or at increased risk of acquiring HIV – key populations (Box 10.4).

BOX 10.4. Key populations

Global actors, including the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund), the Joint United Nations Programme on HIV/AIDS (UNAIDS) and WHO, recognize five key populations at increased risk of HIV: men who have sex with men, transgender and gender diverse people, people who inject drugs, sex workers, and people in prisons and other closed settings (27, 28). People from these populations face structural barriers, in addition to social, legal and other contextual barriers, that increase their risk of acquiring HIV and limit their access to essential services. Stigma and the resulting discrimination are linked to many of the factors that perpetuate higher risks among people from key populations.

Adopting a common approach to identifying and defining key populations promotes harmonized inequality monitoring efforts and continuity in terms of planning, prioritization and development of remedial interventions. WHO has developed technical guidance to assist countries in planning and monitoring HIV services among people from key populations, including guidance for the use of disaggregated data to better understand diversity within key populations (29).

The Demographic and Health Surveys programme introduced indicators related to HIV discriminatory attitudes in the mid-2000s. This has enabled tracking of trends in discriminatory attitudes over time and exploration of inequalities in discriminatory attitudes between population subgroups. The State of inequality: HIV, tuberculosis and malaria report, for example, explored inequalities in HIV-related discrimination, including analysis of the prevalence of accepting attitudes about HIV, disaggregated by age, economic status, education level, place of residence and sex (30).

In 2019, UNAIDS published a framework for human rights-based monitoring of national HIV responses, including guidance for selecting and developing indicators related to stigma and discrimination (31). Subsequently, guidance on community-led monitoring of HIV services was developed, which facilitates tracking specific experiences of discrimination from the perspective of health service users (32). Such monitoring is part of efforts to reduce discrimination in these settings, harness and improve the skills of people living with HIV and their communities, and enhance trust and mutual accountability between service users and service providers (32).

As of 2024, the UNAIDS Global AIDS Monitoring initiative provides guidance for the collection of data on several indicators on stigma and discrimination, including discriminatory attitudes among people in the general population; discriminatory attitudes among health facility staff; internalized stigma; stigma and discrimination within communities; stigma and discrimination within health-care settings; stigma and discrimination experienced by people from key populations; and avoidance of care-seeking (33). Although data on most of these indicators are reported by only a small number of countries, having these indicators provides great potential for monitoring trends over time and in relation to programmatic responses to tackle the different forms and manifestations of stigma and discrimination across diverse settings.

Colonialism

Colonialism refers to “one group of people having the power to dominate, subjugate and/or exploit another group or groups of people, thereby enabling the misappropriation and extraction of resources in a large-scale and systematic manner” (34). Historical and contemporary colonial practices encompass war, displacement, forced labour, removal of children, relocation, ecological destruction, massacres, genocide, slavery, intentional or unintentional spread of diseases, banning of languages, regulation of marriage, assimilation, and eradication of social, cultural and spiritual practices (35).

Processes largely driven by the economic interests of monarchies and settler groups in the fifteenth to twentieth centuries resulted in the conquest, occupation and plunder of large territories and widespread displacement, trafficking and enslavement of large populations. Within the territories carrying out the campaign of colonialism or those subjected to it (i.e. colonies), the effects have been longstanding, including on the health of the population. The health implications of colonialism are both immediate and intergenerational, embodied within individuals, families and entire communities (35, 36).

In many countries, indigenous or minority communities continue to live in imposed circumstances that are considered oppressive and exploitative, with unjust social, political and economic systems (34). Legacies of colonialism and slavery constitute some of the most entrenched forms of systemic racism, racial discrimination, xenophobia and intolerance and are a threat to the realization of human rights and sustainable development (37).

The findings derived from health inequality monitoring often reflect inherited and recalcitrant injustices in the form of inequitable health outcomes for population subgroups that have faced – and continue to face – disadvantage, neglect, or direct oppression and discrimination. The economic logic of colonialism still dominates the world order in many ways and leads to new pathways outside the health sector that determine the distribution and impact of disease burden (38).

Colonialism deeply affects ecologies, configurations and definitions within the knowledge landscape. Evaluations of health initiatives are often carried out by groups and individuals who lack an understanding of – and residency in – the contexts they are studying and who may have “limited knowledge and understanding of the sociopolitical, cultural and health system contexts of countries, and yet produce policy recommendations based on their assessments” (39). This mindset is a form of neocolonial domination, which imposes worldviews, methods and notions of expertise on populations while neglecting the views of local experts, communities and people with lived experiences. This has dire consequences for policy formulation, which may perpetuate or exacerbate health inequalities. Box 10.5 lists further reading on colonialism.

BOX 10.5. Further reading on colonialism

McCoy D, Kapilashrami A, Kumar R, Rhule E, Khosla R. Developing an agenda for the decolonization of global health. Bull World Health Organ. 2024;102(2):130. doi:10.2471/BLT.23.289949.

Decolonization, localization and WHO: history matters. Global Health Matters podcast. Geneva: World Health Organization; 2023 (https://tdr.who.int/global-health-matters-podcast/decolonization-localization-and-who , accessed 19 June 2024).

Example: ethnic-related discrimination and health inequalities in Brazil

With over 300 years of racialized colonialism, Brazil has a large multiethnic population (40). Brazil was colonized by Portugal in the 1500s, and the population subsequently underwent drastic changes. The large majority of the Indigenous population was decimated or assimilated, and the country became a major destination for the African slave trade (41). Brazil was one of the last countries in the Region of the Americas to abolish slavery, in 1888. Brazil’s population has been shaped by several waves of migration from Germany, Italy, Japan, Lebanon and the Syrian Arab Republic, contributing to its unique cultural and ethnic diversity. Alongside the changing ethnic composition of the Brazilian population, there have been evolving approaches to categorizing ethnicity and race in Brazil, and there is a large variety in the terms used, including Amarelos (East Asian people), Brancos (White people), Indigenous Peoples, Pardos (people of mixed race) and Pretos (Black people) (42).

Health inequality monitoring has been used in Brazil to shed light on the extent of inequalities and, along with other evidence, helps to inform the lasting impact of colonialism on the population. Data suggest socioeconomic inequalities persist, with people with darker skin tones experiencing increasing levels of discrimination (40). For example, White populations reported income that was twice as high as that for Black populations in 1995, and 1.6 times higher in 2015 (40). In the health sector, Black residents of Rio de Janeiro had higher prevalence of multiple health conditions, hospital admissions and mortality than people from other racial groups (43). Self-rated health was 10–20% lower among Black and Pardo Brazilians compared with White Brazilians (44). Similar effects were seen during the COVID-19 pandemic, when COVID-19 mortality was higher among Black Brazilians than among other groups (45).

With a growing body of research establishing the relationship between ethnicity and health (46), a number of policy interventions have been introduced in Brazil to address the legacy of racialized colonialism and inequalities. In particular, the National Policy for Comprehensive Health of the Black Population, established by the Brazilian Ministry of Health, acknowledges the history of unjust social, cultural and economic processes that have affected the living conditions of this population (47). The Policy specifies affirmative actions and strategies to prioritize and achieve health equity and promote racial equality, guided by the use of racial classifications for priority-setting and decision-making. The Policy guarantees Black people access to health services in a timely and dignified manner, contributing to improved health of this population and reduced inequities on the basis of ethnicity, gender, gender identity, sexual orientation and class. With responsibilities for each sphere of management in the health system – federal, state and municipal – the Policy requires the creation of institutional structures and indicators for monitoring its implementation (48).

Corruption

Corruption – “the abuse of entrusted power for private gain” – encompasses activities such as bribes, informal payments, embezzlement, nepotism and other forms of abuse of power (49). Corruption constitutes a longstanding drain on health resources, systems strengthening and reform efforts. It is a barrier to economic growth, good governance, and basic freedoms and rights. It exacerbates inequalities within populations because people of different ages, sex and socioeconomic status experience corruption and its effects differently (Box 10.6).

BOX 10.6. Corruption and inequality

The 2019 Afrobarometer report Global Corruption Barometer Africa 2019 presents public opinion data on views on corruption and direct experiences of bribery across 35 African countries. In the year preceding the survey, more than a quarter of people who accessed public services, including health care and education, had paid a bribe. Economic-related inequality was evident – increasing wealth corresponded with lower likelihood of paying a bribe. Among the poorest people, 36% had paid a bribe, compared with 31% of moderately poor people, 25% of moderately well-off people, and 19% of the wealthiest people. Men (32%) were more likely than women (25%) to pay a bribe. Young people aged 18–34 years (32%) were more likely than people aged 55 years and over (18%) to pay a bribe. Variations were reported across countries: the percentage of people who had paid a bribe ranged from 5% in Mauritius to 80% in the Democratic Republic of the Congo (50).

Various forms of corruption were evident in COVID-19 service delivery. Spanning diverse geographical settings, corrupt actions included informal payments, theft and embezzlement, favouritism, manipulation of data, unauthorized or corrupt absenteeism, and service provision malpractices such as overcharging or defrauding clients. These actions have negative direct and indirect consequences across populations and health systems, but they are often disproportionately harmful to women, poor people, and people from migrant or ethnic backgrounds (51).

Corruption in its various forms is a threat to the achievement of the Sustainable Development Goals (SDGs). It is addressed in SDG target 16.5, which is focused on introducing anti-corruption, transparency and accountability measures within and across Member States (52).

The impacts of corruption are wide-ranging and the linkages similarly multifarious – for example, reporting of dysfunctional health systems, absenteeism, stockouts and waiting times are associated with payment of bribes (53). Corruption in health systems arises in situations where health infrastructure is chronically underfunded, where regulatory oversight is lacking, and where the nature of governance lacks transparency (53, 54). Corruption has links to colonialism, where exploitative practices and clientelism were established as norms and informal social structures and have remained even as countries have attained independence (55). Anti-corruption has been a joint priority of several international health organizations, including the Global Fund, the United Nations Development Programme, WHO and the World Bank (56).

Health inequality monitoring can serve as a vehicle for public transparency and accountability and can be part of efforts to expose and end corruption (e.g. the findings of the Afrobarometer survey in Box 10.6). Health inequality monitoring can be used to monitor types of corruption in health systems, including assessing the theft and misuse of information, employee nepotism, research misconduct, misuse of health services, and improper procurement processes and payment schemes, but data on these topics are not readily forthcoming and evidence may not be easy to compile (57). The involvement of community councils, community-led monitoring and other social audit mechanisms that use monitoring can ensure bottom-up accountability and promote vigilance against corruption (53).

Box 10.7 lists further reading on corruption.

BOX 10.7. Further reading on corruption

Anti-corruption, transparency and accountability. Global Health Action. 2020;13(Suppl. 1) (https://www.tandfonline.com/toc/zgha20/13/sup1, accessed 23 September 2024).

Reducing health system corruption. Geneva: World Health Organization (https://www.who.int/activities/reducing-health-system-corruption, accessed 19 June 2024).

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