Chapter 4. Health inequality monitoring: a shared responsibility
Overview
Health inequality monitoring is a shared responsibility, involving a range of stakeholders from global and regional levels to national, subnational, community and individual levels. Monitoring practices across these different spheres are complementary. Although they share many similarities in their approach and are united in the larger purpose of advancing health equity, they may reflect different purposes, with their own requirements, considerations and contributions. Global inequality monitoring offers a broad view of the situation, permitting cross-national comparisons and assessments of trends. As the scope of monitoring becomes more localized across regional, national and subnational levels, there are opportunities to explore context-specific factors and priorities more deeply.
Although specialized skills are often required to carry out the technical steps of health inequality monitoring (especially preparing and analysing data), wider engagement with a variety of stakeholder groups adds value across many other stages of health inequality monitoring:
Policy-makers and implementers often have a strong role in initiating and overseeing inequality monitoring, including helping to establish the scope for monitoring, ensuring the availability of resources, and driving actions informed by the results of monitoring.
Research and technical institutes are instrumental in developing and refining methodological approaches, supporting capacity-building for monitoring, and conducting analyses.
Individuals from civil society and nongovernmental organizations, community members and people with lived experiences make diverse and important contributions, and may have a leadership role in defining the scope of what is to be monitored, collecting and analysing data, and pursuing the meaningful interpretation and application of findings. They also play a role in holding governments and other stakeholders accountable to promises and commitments and advocating for the needs of communities to decision-makers.
Health professionals, including community health workers and public health professionals, have a role to play across the steps of inequality monitoring, because they bring important perspectives to agenda-setting activities, facilitate data collection activities, and collaborate on the development and deployment of actions to advance health equity.
Together, collaborations involving many stakeholders can help to identify and address inequalities in a manner that upholds accountability and is action-oriented.
This chapter explores the different levels at which health inequality monitoring is conducted and the roles and responsibilities of stakeholders working across these levels, underscoring the shared responsibility for health inequality monitoring. The objective of this chapter is to describe the purpose and contributions of health inequality monitoring across global, regional, national and subnational levels, highlighting the range of stakeholders involved in monitoring. It also addresses responsibilities related to health data governance, including data security considerations.
From global to local: purpose and contributions of inequality monitoring across various levels
At the global level, health inequality monitoring makes comparisons between multiple countries or regions. Such monitoring may be based on overall national or regional averages, but in the context of this book, between-country comparisons of the state of within-country inequality are of particular interest (see Chapter 2. Regional inequality monitoring adopts a narrower scope, comparing the state of inequality between countries within a world region. Global and regional levels may also play a role in identifying and addressing the needs of people who are stateless or mobile or who do not have legal rights in countries (see Chapter 5). At the national level, comparisons are derived from subgroups of national populations. Subnational monitoring focuses on inequalities within or between one or more provinces, states, districts, municipalities, communities or other subnational populations.
Global level
Global actors have an instrumental role in establishing mandates and support for health inequality monitoring activities through high-level political commitments and resource mobilization. When global in scope, inequality monitoring is often conducted to identify larger trends and patterns, track progress on global goals (such as the Sustainable Development Goals, SDGs), and inform high-level resource allocation (e.g. enabling targeted responses to global crises). These functions may be motivated by the priorities set out by global agencies, such as Gavi, the Vaccine Alliance, the Global Fund to Fight AIDS, Tuberculosis and Malaria, and United Nations agencies. It can also be instrumental for identifying priority settings of interest for further inequality monitoring (see Box 4.1). Benchmarking at the global level can promote a broader understanding of the state of inequality within a particular country and facilitate knowledge-sharing between settings.
BOX 4.1. Assessing the global state of inequality in childhood immunization
The WHO report State of inequality: childhood immunization characterized within-country inequalities in 69 low- and middle-income countries with comparable data (1). The findings of the report demonstrated large inequalities in national immunization coverage between countries, with many countries reporting high levels of within-country inequality by economic status and mother’s education level. Based on this global analysis, 23 priority countries were identified for further analysis, featuring more detailed country-level disaggregated data across relevant dimensions of inequality (1). A follow-up report Explorations of inequality: childhood immunization probed more deeply into the factors associated with childhood immunization across a subset of 10 priority countries (2).
Because inequality monitoring at the global level entails comparisons between countries or regions, it requires alignment in terms of how health indicators and dimensions of inequality are defined. Global monitoring standards, definitions and frameworks are particularly useful to ensure comparability across settings (see Chapter 3). Monitoring at the global level may rely on advanced techniques to consolidate existing data, carry out targeted data collection (e.g. through multicountry household survey programmes – see Chapter 12), conduct modelling exercises, or apply advanced methods of inequality analysis. Depending on the target audience, reporting at the global level may involve high-level reports, technical publications, dissemination events, presentations and dashboards. For example, the WHO World Health Statistics report series is an annual compilation of health and health-related indicators across all countries, including inequality analyses for selected topics (3). Global conferences and meetings can further enhance implementation and experience-sharing.
WHO plays a central role in directing and coordinating on international health work. It has an active programme dedicated to health inequality technical analysis and support, scientific collaboration and knowledge generation (4). These activities are supported by numerous multilateral agencies, research institutions and development partners working across health and other sectors. For example, the WHO collaborating centre the International Center for Equity in Health, based at the Federal University of Pelotas in Brazil, undertakes activities related to providing technical assistance on health inequality monitoring for WHO Member States (5).
Regional level
Although the general purposes and reuirements of regional inequality monitoring are similar to those of global monitoring, regional monitoring has the scope to be more sensitive to regional needs and priorities. In this way, inequality monitoring at the regional level may be done against a backdrop of commonalities related to language, culture and geography. Inequality monitoring at this level can reflect specific health topics and forms of disadvantage that are relevant across countries of the region but not necessarily on a global scale. For example, migration, conflict, natural disasters and disease outbreaks may affect multiple countries, and coordinated data collection and analysis at the regional level may be required.
Regional supports for monitoring activities may be needed to bolster country capacity, especially when emergency or crisis situations hinder the availability of more localized resources for monitoring. Against a common regional backdrop, benchmarking at a regional level may be particularly useful for deriving lessons from the experiences of other countries and exploring the impact of national-level policies or conditions.
There are active health inequality monitoring initiatives across all six WHO regions. Collaborations specific to certain health topics may be instrumental for promoting and conducting health inequality monitoring within regions. Box 4.2 provides examples of regional-level health inequality monitoring initiatives.
BOX 4.2. Examples of regional-level health inequality monitoring initiatives
The WHO European Region Health Equity Status Report Initiative promotes and supports policy action and commitment for health equity and well-being in the European Region (6). Its aims include setting a baseline for monitoring health inequality within Member States and setting an agenda for scaling up and enabling action on health equity within countries. The initiative encompasses a WHO European health equity dataset, policy guidance and other supporting tools (7).
As part of its efforts to monitor the health-related SDG 3, the Pan American Health Organization (PAHO) has developed an interactive dashboard tool for equity monitoring and analysis across the region (8). The toolkit provides evidence about SDG 3 indicators across the region, enabling comparisons of between- and within-country inequality. For more on inequality monitoring and the SDGs, see the example later in this chapter.
The Every Woman Every Child initiative for the Latin America and Caribbean region has convened a health inequality monitoring focused coalition of United Nations agencies and key stakeholders, including the Inter‑American Development Bank, the Joint United Nations Programme on HIV/AIDS, the Latin American and Caribbean Neonatal Alliance, the Latin American and Caribbean Regional Task Force for the Reduction of Maternal Mortality, PAHO, the United Nations Children’s Fund, the United Nations Population Fund, the United States Agency for International Development, UN Women and the World Bank (9). This coalition has created a data dashboard to monitor regionally prioritized indicators aligned with the global Survive, Thrive and Transform objectives, ensuring they have local relevance. Alongside this, a compendium of tools and resources has been created to support action on intermediary and structural determinants of health, with cascades of training on understanding and addressing inequalities, accessible to local stakeholders in their local languages.
National level
National-level inequality monitoring may be conducted as an extension of global and regional monitoring, or it may reflect separate priorities specific to a country. The purpose of inequality monitoring at the national level may be directly linked to accountability and action mechanisms present in government, the health sector, health programmes or development initiatives. When conducted regularly, national inequality monitoring serves an essential public health function. For example, it can provide evidence about the impact of national policies, programmes and practices (including budgets and resource allocations), which may help to inform subsequent changes to advance health equity. Ideally, regular health inequality monitoring should be integrated into national health information systems (see Chapter 6).
The specifications for national health inequality monitoring activities can be selected to closely reflect the national context (10). National decision-makers and technical experts have a role in identifying health topics, indicators and population subgroups that are of national importance, aligning with global metrics where relevant. In terms of data collection, governments may commission regular or ad hoc surveys, studies or monitoring processes and have established routine health information systems (sometimes in partnership with donor agencies). National governments may make disaggregated data publicly available for wider use, and civil society organizations may compile data in population-based observatories or reviews. National agencies may carry out inequality analyses based on national priorities and needs, ensuring representation of population subgroups that may be left behind. Depending on the technical capacity available at the national level, analyses may be somewhat rudimentary or incorporate innovative analytical approaches. Box 4.3 contains examples of health inequality monitoring activities at the national level.
BOX 4.3. Examples of national-level health inequality monitoring activities
Indonesia undertook an extensive process involving a range of national stakeholders to build capacity for health inequality monitoring and institutionalize it as part of the country health information system (11). A series of workshops, technical meetings and other activities in 2016–2017 resulted in the country’s first national report on the state of health inequality (12) and numerous peer-reviewed manuscripts on health inequality in Indonesia (13). Sustained political will across all levels of administration and leadership within the country, along with the participation and collaboration of stakeholders and concurrent development of technical tools, contributed to the success of this endeavour (11). For more on the selection of topics, health indicators and dimensions of inequality for the national state of health inequality report, see Chapter 3.
In Malaysia, the Department of Statistics maintains a dashboard that catalogues, visualizes and analyses disaggregated data on health indicators, ensuring data are publicly available (14). A report published by the non-profit-making organization Khazanah Research Institute in 2020 presents inequalities related to social factors (income and work) and their relationship with health outcomes (15). This report adds to a growing body of literature on inequalities in health outcomes, which draws from national surveys and administrative data. Other analyses of health inequalities in Malaysia are conducted at the national and subnational levels, driven by emerging policy needs.
Canada endorsed the Rio Political Declaration on Social Determinants of Health in 2012, pledging to take action to promote health equity. Strengthening the capacity to monitor and report on health inequalities was recognized as a critical foundation for achieving meaningful progress towards this goal. The Pan-Canadian Health Inequalities Reporting Initiative supports Canada’s pledges under the Rio Declaration. Based on a framework developed by WHO, the Initiative aims to strengthen the measurement, monitoring and reporting of health inequalities in Canada. It does this by improving access to data and developing resources to improve knowledge of health inequalities. Data tools and evidence products from the Initiative can be accessed by using the online interactive Health Inequalities Data Tool. This contains over 100 indicators of health status and health determinants, stratified by a range of population groups meaningful to health equity (16).
The Office for National Statistics in the United Kingdom of Great Britain and Northern Ireland collects and publishes statistics and conducts the census in England and Wales every 10 years. Inequalities in health are monitored by measures of socioeconomic status (17). For example, it has reported on life expectancy, mortality rates by cause, healthy life expectancy and disability-free life expectancy using slope index of inequality to demonstrate inequalities between deciles of small areas, classified by a national index of deprivation (18, 19).
Subnational level
Subnational-level monitoring is characterized by the ability to closely reflect local priorities, contexts and knowledge systems. It can incorporate health concerns, environmental conditions or forms of disadvantage that are pertinent within a specific locality. It can be conducted within a single subnational area, such as a province or state, health district or community, with the purpose of generating a granular understanding of the local state of inequality. It may also be harmonized across multiple subnational areas, with the purpose of feeding into national-level monitoring. Due to the close proximity of subnational monitoring to on-the-ground service delivery and programme implementation, it has the potential to be highly responsive to local communities in comparison with monitoring conducted at higher levels. To this end, health indicators and inequality dimensions that are defined nationally can be further adapted to reflect the local context and serve as an evidence base for action.
In health systems characterized by a high degree of decentralization (i.e. where a large extent of authority and power over public planning, management and decision-making is afforded to subnational rather than national levels), monitoring at the subnational level can provide evidence on local situations of inequality and inform strategies for targeting activities towards areas of greatest need. Subnational inequality monitoring and evaluation efforts can be a fruitful part of knowledge-sharing between localities. Insight into successes and challenges across one subnational area may impart lessons and inspire action in another area.
Communities and people with lived experiences, community health volunteers and frontline service delivery providers can define the scope of what is to be monitored and how it may be used (e.g. for local action or reporting to other levels), in partnership with civil society organizations. At the local level, monitoring of health services and facilities has occurred, with initiative taken by communities and civil society and, in some cases, by local self-government actors, focused on the needs of populations left behind. In these efforts, outcomes for populations left behind are interpreted in the light of existing norms, standards or guarantees, or in comparison with more advantaged regions or population subgroups (and sometimes tracked over time). Outcomes may be determined by communities, and the data may be collected and owned by communities and used to negotiate with local providers and government actors.
Box 4.4 provides examples of subnational-level health inequality monitoring activities.
BOX 4.4. Examples of subnational-level health inequality monitoring activities
The Canadian province of Québec has developed a strategy and set of indicators to monitor health inequalities at the provincial and health region levels. The system of Surveillance des inégalités sociales de santé presents inequality measures for various health indicators. These measures portray the current state of health inequalities and allow ongoing monitoring over time. Information is used to support the development of public health policies and programmes aimed at reducing health inequities (20).
In the United Kingdom of Great Britain and Northern Ireland, the Department of Health and Social Care monitors inequalities in various health measures, including life expectancy, mortality rates, child health, behavioural risk factors and wider social determinants, at each local government administrative level (21). The Health Inequalities Dashboard provides interactive information to monitor progress on reducing inequalities within regions and local authorities in England (22).
Brazil has a longstanding tradition of compiling health and social indicators and monitoring health inequalities. The Rede Interagencial de Informações para a Saúde (Interagency Network for Health Information) congregates dozens of governmental, academic and nongovernmental organization stakeholders to select, estimate and publish a large collection of health-relevant estimates at the national and subnational levels. Drawing from a variety of data sources, the data feature indicators across demographic, socioeconomic, mortality, determinants, morbidity, health resources and intervention coverage topic areas. Tackling health inequities is a main priority. Indicators are presented at the national level and disaggregated by subnational region, state, municipality, and other relevant dimensions of inequality such as sex, age, schooling and occupation. A cross-cutting health equity committee is being established to find solutions to act on inequalities (23).
Many societies have a history of community-based or community-led resource management practices, wherein small communities have a prominent role in leading or governing actions to promote health, well-being and other shared priorities (24, 25). In some contexts, these practices continue to exist and evolve, while in other contexts, there are efforts to reclaim or introduce practices, including efforts to increase the voice of the people in matters related to health inequality monitoring (Box 4.5). For more information on community-led monitoring, see Annex 3.
BOX 4.5. Enhancing community voice for health inequality monitoring
At all stages of the health inequality monitoring cycle, there is scope for increasing the voice of communities and people with lived experiences, which in turn enhances the rigour, relevance and impact of monitoring.
Political commitments and declarations can create an enabling environment for strengthened participation and community voice. For example, the Civil Society Engagement Mechanism for UHC2030 aims for universal health coverage policies to be inclusive and equitable by ensuring civil society has a voice in the UHC 2030 movement (26). The State of Commitment to Universal Health Coverage: Synthesis 2023 tracks progress in implementing agreed upon commitments for universal health coverage, drawing mixed-methods data from policy reviews, surveys, global indicator repositories, media sources and country consultations (27). The Global Partnership for Social Accountability aims to expand opportunities for civil society to work with governments, presenting the possibility for deeper engagement around health equity issues and strengthening accountability and improving governance (28).
Measures to uphold collaborative social accountability can increase the impact of participatory spaces and strengthen linkages across levels of the health system, enabling both government directives and grassroots advocacy. For example, in the state of Maharashtra in India, several social accountability tools were rolled out at the local, district and state levels of the health system, including community health service assessments, local meetings with clinic staff, public dialogues, health oversight committees, and autonomous monitoring committees active at multiple levels of the health system (29).
Health data governance
There is increasing recognition that ownership of and control over data collection processes and the uses of data should lie with the people from whom the data were collected. Fostering community ownership of inequality monitoring may be especially important within communities that have experienced discrimination, marginalization or exclusion, and that may have a profound distrust of systems that reinforce health inequalities.
Data governance refers to a framework or mechanism that builds and maintains trust in data (and the institution producing and holding the data) by managing transparently the access, use and reuse (including matching and linking), quality and security of those data to maximize the net benefits. Data governance frameworks set out the standards, solutions and structures necessary to improve the coordination of the “data journey” from collection to sharing, storage, analysis and use (33).
Elements included in a typical data governance framework include data management, quality, security and privacy, sharing and access, and reporting and analysis. These elements must be supported by a governance or management structure with clearly defined roles and responsibilities.
A comprehensive global set of health data governance principles has been developed to ensure individuals, groups and communities are protected against data-related harm and violations. The global Health Data Governance Principles, developed through collaborative efforts driven by civil society, seek to support the use of digital technologies and data for the public good (34). The principles are clustered around three high-level objectives of protecting people, promoting health value and prioritizing equity. Recognizing the need for global guidance as regions and countries implement tailored health data governance policies and legislation, the principles are intended for use by governments, the private sector, international organizations, civil society and others (34).
Likewise, WHO abides by the WHO Data Principles, which serve as a transparent framework of data governance for the organization (Box 4.6), and data governance is an integral part of the United Nations Secretary-General’s Data Strategy (36).
BOX 4.6. Health data governance at WHO
WHO developed a set of data principles through an internal consultation process involving staff from across headquarters and regional offices, and in consultation with external experts (35). The five resulting principles are a commitment by WHO to:
treat data as a public good;
uphold Member States’ trust in data;
support Member States’ data and health information systems capacity;
be a responsible data manager and steward;
strive to fill public health data gaps.
There are also national and subnational efforts to promote responsible and collaborative approaches to health data governance. For example, Box 4.7 highlights data governance principles and framework developed by Indigenous groups in Canada.
BOX 4.7. Health data governance: Indigenous groups in Canada
As part of Canada moving towards reconciliation with Indigenous Peoples, several community-specific data governance principles and frameworks have been developed (37). They include the following:
The First Nations Principles of Ownership, Control, Access and Possession assert that First Nations have control over data collection processes, and that they own and control how this information can be used. They are the standard approach to First Nations data governance and support data sovereignty (38). Given the diversity within and across First Nations, expression of the principles may vary from one Nation to another, in line with different world views, traditional knowledge and data management protocols.
The Inuit Qaujimajatuqangit Framework, representing Indigenous Inuit knowledge, is based on four elements – working for the common good, respecting all living things, maintaining harmony and balance, and continually planning and preparing for the future (39). This approach forms the foundation for wellness in Inuit communities, as does the valuing, preserving and promoting of traditional knowledge.
The Manitoba Métis principles of Ownership, Control, Access and Stewardship describe how Métis health and wellness information should be collected, accessed and used. The information should be under the ownership and control of the Métis Nation (40). The Métis National Council supports knowledge translation agreements with federal, provincial and territorial governments towards evidence-based interventions that benefit Métis health and well-being.
Data security considerations
As more health data around the globe are digitalized, data security is a growing consideration with regard to health data governance. Data security encompasses the protection of data privacy and confidentiality, while promoting its integrity and appropriate accessibility and utility. Increasingly, strict data protection and cybersecurity laws are put in place to ensure the processing of personal health data – including data used by the public health sector – adheres to core data protection principles (41). The WHO Personal Data Protection Policy, for example, outlines the rules and principles relating to the processing of personal data by or within WHO (42).
Safeguarding the confidentiality of monitoring information on health inequality – and on health in general – is crucial to gain and maintain public trust. Without public trust, many people may not participate in data collection, compromising the value of the efforts. Data custodians and government systems should ensure appropriate access of data coupled with adequate data protection protocols to maximize benefit and reduce harm to individuals and populations.
The Five Safes framework provides a structured approach to managing access to sensitive data and mitigating disclosure risk (43). It covers the following five requirements:
Safe people: Only authorized individuals can access the data, such as people trained in confidentiality protocols and who have signed user agreements.
Safe projects: Data projects must be in the public interest, with a clear rationale for the data collection (i.e. which data are collected and why), the statistical purpose and the methodology.
Safe data: Data are de-identified in proportion to their use, with personal identifiers removed, as required. For example, source data may need to be identifiable for data validation and linkage under controlled conditions, but open-source data files must be completely anonymized. When data are shared, only the minimum necessary information should be reported.
Safe settings: Data can be accessed only in secure information technology and physical environments.
Safe outputs: Before public release, outputs undergo additional checks and measures (vetting rules) to avoid disclosure of identifiable information.
Due to the nature of disaggregated health data – where health information is presented for small population subgroups – there may be fewer data anonymity concerns than for individual-level data (noting that users may still need to access individual data to create aggregated estimates). Measures may still be required to avoid unintentional breaches of anonymity. Presenting racial or ethnic-specific data about disease rates by postal code, for example, may make it possible to trace individual identities. To uphold anonymity, data may need to be aggregated at a higher geographical level, such as by municipality. Another option is to aggregate small-area data according to a dimension of inequality – for example, by creating deciles of postal code areas based on degree of urbanization (see Chapter 17).
Example: inequality monitoring and the United Nations 2030 Agenda for Sustainable Development
The United Nations 2030 Agenda for Sustainable Development and its commitment to leave no one behind is a global accountability mechanism for identifying and addressing inequalities, including inequalities in health. Agreed upon at the United Nations Headquarters in 2015, the Agenda represents a global consensus on attaining 17 SDGs by the year 2030. Critically, linkages across global to local levels are important for global consensus processes and implementation at the local level, as well as national and subnational priority-setting and country-level contextualization.
Monitoring is central to tracking progressing towards achieving the 17 SDGs, which each specify corresponding targets and indicators, and an equity focus is evident throughout. SDG 10 specifically addresses inequality within and among countries, calling for “social, economic and political inclusion of all, irrespective of age, sex, disability, race, ethnicity, origin, religion, or economic or other status” (44). SDG 17, on implementation and partnerships, includes a target on “support to developing countries, including for least developed countries and small island developing States, to increase significantly the availability of high-quality, timely and reliable data disaggregated by income, gender, age, race, ethnicity, migratory status, disability, geographic location and other characteristics relevant in national contexts”. This specifically frames inequality monitoring as a shared responsibility involving exchange and capacity-strengthening initiatives within and across countries.
In support of SDG monitoring, a global indicator framework was agreed upon at the 48th session of the United Nations Statistical Commission in 2017, and subsequently adopted by the United Nations General Assembly (45). The indicator development builds on a series of previous efforts, including the Commission on Sustainable Development, held since 1993, which was replaced by the United Nations High-level Political Forum on Sustainable Development in 2012 (46). A major initiative of this Forum is its support of follow-up and review mechanisms, including encouraging Member States to “conduct regular and inclusive reviews of progress at the national and subnational levels, which are country-led and country-driven” (47).
Voluntary national reviews are non-mandatory, state-led, multistakeholder initiatives that consolidate experiences and perspectives on progress against the 2030 Agenda with an emphasis on achievements, challenges and lessons learnt. The United Nations Economic and Social Council has directed the creation of various approaches, tools, trainings and resources for voluntary national review reporting, which creates a pathway between national review efforts and global appraisal of progress on the SDGs at High-level Political Forum meetings.
Localizing SDG initiatives, which are under way across many countries, are another example of monitoring efforts that span global, national and subnational levels (48). Local self-government leaders are adapting and customizing global monitoring guidance to their local contexts while fulfilling obligations towards the global SDGs.
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