Chapter 6. Embedding inequality monitoring within health information systems

Overview

Health information systems integrate data collection, processing, analysis, reporting, and use of the information necessary for improving health service effectiveness and efficiency through better management at all levels of health services (1). Health information systems include data from the health sector and other relevant sectors to support management and decision-making processes across health systems (2, 3). The main components of a health information system include health information system resources, indicators and related targets, data sources, data management, information products, and dissemination and use (3).

Integrating health inequality monitoring considerations across a country’s health information systems contributes to mainstreaming health equity in the health sector. For example, health-sector policies and plans should include equity-based targets and indicators, including those related to determinants of health. Health equity indicators can be estimated through the regular collection of disaggregated data that are timely, relevant and of high quality. Inequality analyses and reporting should be strategically timed to ensure the resulting evidence can be used as part of decision-making processes. Ideally, this equity orientation should be evident across all health programmes and initiatives, rather than serving as a parallel programme. In this way, health information systems can be leveraged to generate and link inequality data to action on health equity.

Often, however, health information systems are not optimally oriented towards generating and acting on evidence about health inequalities. They may lack the necessary funding, technical capacity, political will and public support to generate inequality data and act on the recommendations that arise from the monitoring results. In some cases, health inequality monitoring may not be conducted on a frequent basis, resulting in insufficient or untimely evidence. Societal factors external to health information systems may sway attention and resources towards maintaining the status quo (see Chapter 10).

Efforts to integrate and mainstream health inequality monitoring as part of health information systems may entail improving the quality, scope and reach of data-collection efforts. Expanded or more rigorous analysis of existing data and systems may be required, including information about health outcomes, determinants of health and health systems factors. Integrating health inequality monitoring may entail more effective strategies to communicate results of existing analyses and underlying disaggregated data to the appropriate audiences. Establishing political support for these activities is vital to ensure health inequality monitoring is adequately resourced and sustainable.

The objective of this chapter is to demonstrate how health information systems can be oriented to promote and enable routine inequality monitoring in the health sector. Much of the chapter focuses on national health information systems, but the concepts have wider applicability to other contexts. Examples are provided to demonstrate how inequality monitoring has been – or can be – embedded into the activities of global health initiatives. After identifying strategic entry points for introducing or strengthening key health inequality monitoring activities through health information systems, the chapter provides an example of inequality monitoring in immunization programmes.

Strategic entry points for promoting inequality monitoring

To enhance its impact, health inequality monitoring can be strategically integrated across the components of a health information system. This may be supported through legislative, regulatory and planning frameworks that embed health equity as a priority, commit resources for inequality monitoring, and create accountability for inequality monitoring activities. This conveys political will for characterizing and addressing situations of inequity and provides a rationale for ensuring inequality monitoring activities are adequately resourced in terms of personnel, finances and other logistics support.

The collection of high-quality, meaningfully disaggregated data ensures the availability of information about population subgroups. Investments in capacity-strengthening for inequality analysis techniques enhance the ability to assess and interpret data accurately and derive reliable conclusions. Regular reporting through annual reports, programme or policy review cycles, meetings or conventions can serve as powerful platforms to share the results of monitoring with particular audiences. Such information products, and their dissemination, can enable the use of evidence for decision-making processes.

Across these components, coordination is required to ensure inequality monitoring is aligned with relevant decision-making processes, and adequate budget allocations and other resources are dedicated to follow through with action and advocacy.

Establish inequality targets and indicators

A first strategic entry point for promoting regular health inequality monitoring lies in establishing inequality targets and indicators. Globally, equity is a key tenet of human rights treaties, and the advancement of equity is evident in major health and development initiatives (Box 6.1). High-level planning exercises, whether across national health sectors or in specific health programmes, frequently specify equity as a foundational principle. This provides a basis for developing equity targets and indicators. Their inclusion as part of monitoring frameworks creates accountability for health inequality monitoring, while also defining the parameters of what is monitored (i.e. which indicators and how they are defined) and when monitoring is to be done (i.e. ensuring timeliness of analysis and reporting). Inequality monitoring should encompass both health and determinants of health indicators, as appropriate. Consideration should be given to ensure the set of indicators reflects diverse aspects of the topic beyond health outcomes (see Chapter 3).

BOX 6.1. Major global health initiatives emphasize the reduction of health inequalities in plans and strategies

Equity has been integrated into the strategic plans and activities of high-level health programmes such as Gavi, the Vaccine Alliance, the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund), and the Joint United Nations Programme on HIV/AIDS (UNAIDS).

Gavi, the Vaccine Alliance foregrounded equity in its phase 5 institutional strategy (2021–2025), placing particular emphasis on increasing equity in immunization delivery as a core component of its health systems strengthening support (4). The corresponding target aims to reduce the number of children who do not receive any routine vaccinations by 25% by 2025, and by 50% by 2030. To facilitate monitoring, Gavi has set up Zero-dose Learning Hubs in four priority countries, with the aim to marshal evidence on intervention approaches to reduce gaps and inequalities in immunization coverage, focusing on unimmunized and under-immunized children and missed communities (5). For more information, see the example of embedding inequality monitoring in immunization programmes at the end of this chapter.

The Global Fund is focused on a world free of HIV, tuberculosis (TB) and malaria. Its 2023–2028 strategy, Fighting Pandemics and Building a Healthier and More Equitable World, has a specific objective calling for maximization of health equity, gender equality and human rights (6). The Global Fund promotes country ownership, commitment and capacity of monitoring and evaluating equity-oriented programmes through initiatives such as Breaking Down Barriers, which carries out analyses of inequalities countries challenged by disproportionate burdens of HIV, TB and malaria. The analyses are specifically intended to expand programming and reduce human rights and gender-related barriers to services. In addition, the Global Fund has introduced new health equity key performance indicators, which track whether health inequalities are reducing within the country programmes it supports.

The UNAIDS Global Aids Strategy 2021–2026. End Inequalities. End AIDS positioned the reduction of inequalities as the key to ending HIV as a public health threat globally (7). Acknowledging that inequalities exist between and within countries, and that overall averages mask areas of continued concern, the Global AIDS Strategy applies an inequalities lens to identify, reduce and eliminate inequalities that are barriers to people living with or affected by HIV.

Equity targets are measurable goals aimed at reducing inequalities by a specified amount, within a specified timeframe. Monitoring frameworks with equity targets include indicators that capture the reduction of inequality or, in some cases, improvements among disadvantaged subgroups.

The inclusion of equity targets and indicators is not yet a standard part of health planning processes in all countries. Nearly all national health policies in the Region of the Americas, for example, specified health equity as a goal, but in more than half of countries this did not translate into the inclusion of inequality reduction targets (Box 6.2). Although the United Nations 2030 Agenda for Sustainable Development underscores a strong commitment to equity and leaving no one behind, the health-related targets and indicators are focused on global and national averages rather than the explicit reduction of inequality (9). A methodology has been proposed for setting national health inequality reduction targets aligned with the health-related Sustainable Development Goal (SDG) (10).

BOX 6.2. Equity in national health plans in the Region of the Americas

A region-wide analysis of national health-sector policies, strategies and plans in the Region of the Americas assessed the degree to which countries incorporated equity into their national health plans (8). In nearly all of the 32 countries in the study, the national health plan stated that health equity was part of the overarching mission or vision, and countries most specified a goal of providing universal health coverage. Fewer countries, however, addressed multisectoral actions, accountability measures, or capacity to respond to health inequities.

With regard to disaggregated data, monitoring and accountability, about 60% of countries included baseline data on health inequalities in the national health plan, and around 40% included time-bound targets on reducing absolute or relative health inequalities in health service access or health outcomes. Only a few countries included health equity targets in their national development strategies.

Political will and data availability are important prerequisites for delivering on plans to address health equity. There is also a need for increased technical support and peer learning. Overall, the study concluded that the diversity across national plans – which each contained strengths and gaps – could serve as an opportunity for learning and sharing of best practices across countries.

Orient health information systems to collect disaggregated data

Another entry point for promoting inequality monitoring lies in the expanded collection of disaggregated health data across diverse data sources. Disaggregated health data reveal underlying inequality patterns that are not evident from overall averages and are the most basic data requirement for the inequality analyses described in Part 4. Many health information systems collect data that can be disaggregated by age or sex, but disaggregation by other factors, such as economic status, education or place of residence, tends to be less available. Box 6.3 describes a scoping exercise used for the WHO Health Inequality Data Repository. Countries should be strategic in planning how to collect relevant data most effectively through routine systems, surveys or special studies to understand health inequalities within the population. See Part 3 for more on data sources, including their strengths and limitations for health inequality monitoring.

BOX 6.3. Scoping exercise for the Heath Inequality Data Repository

In 2023, WHO undertook a systematic scoping exercise to identify sources of publicly available disaggregated data on health and health determinants (11). The results of this exercise were featured in the 2023 update of the WHO Health Inequality Data Repository (12). The exercise entailed a search of databases maintained by WHO, the United Nations and its specialized agencies, and other prominent international health, development and research organizations. The main criteria for inclusion were country-level data, disaggregated by one or more dimensions of inequality and updated within the past five years.

The search yielded data from 16 sources, including over 2000 indicators and 22 dimensions of inequality. The most common dimension of inequality was sex (87% of indicators), followed by age (23%) and place of residence (22%). There was limited availability of data disaggregated by socioeconomic-related dimensions of inequality such as education (15% of indicators), economic status (14%), subnational region (12%) or disability (2%).

Disaggregated data were available for around half of the eligible SDG indicators (52 of 97 indicators), but less than half of the indicators for the health-related goal (SDG 3) were disaggregated (11 of 26 indicators).

Build and sustain capacity for inequality analysis

A range of technical skills are required to conduct inequality analyses, including assessing data availability and suitability, preparing disaggregating data, calculating and interpreting summary measures of inequality, and developing key messages. These topics are addressed in Parts 3 and 4. Building, strengthening and sustaining capacity for inequality analysis as part of a health information system is an active process that requires country commitment. Incorporating capacity-building for health inequality analysis into health information systems constitutes another entry point for embedding health inequality monitoring.

To this end, the WHO Inequality Monitoring and Analysis Strategy 2022–27 includes a goal dedicated to strengthening capacity for health inequality monitoring at the country, regional and global levels (13). WHO has developed a number of tools to support capacity-building in countries and other global partners (14). Dedicated capacity-building activities in the South-East Asia Region, for example, have included workshops and the development of analytical frameworks and tools (15).

Establish regular inequality reporting

Another entry point for promoting health inequality monitoring lies in establishing reporting requirements for inequality data and evidence. This includes ensuring available disaggregated data are routinely included in national statistical reporting (e.g. in dashboards, statistical reports or policy briefs). Some countries publish regular health inequality reports to share experiences and progress in advancing health equity. Canada, for example, established the cross-institute Pan-Canadian Health Inequalities Reporting Initiative to support regular health inequality reporting and guide health equity-informed policy and action. The Initiative has developed several key products since its inception in 2012 – including the online interactive Health Inequalities Data Tool (16) and key reports (17, 18) – to present in-depth data about some of the most pressing health inequalities across Canadian populations. The WHO SCORE assessment provided insight into how countries reported disaggregated data obtained from various data sources (Box 6.4).

BOX 6.4. WHO SCORE assessment

The WHO SCORE for health data technical package: global report on health data systems and capacity, 2020 provided a global assessment (based on 133 countries) of the availability and reporting of disaggregated data from various data sources (19). Overall, only half of country health statistics reports included disaggregation.

Population surveys conducted between 2013 and 2018 tended to be the sources with the most disaggregated data, especially in low- and middle-income countries. A total of 91% of surveys across all countries contained data disaggregated by sex and 83% contained data disaggregated by age – but less than 75% collected data by education, rural/urban place of residence or subnational region, and only 58% collected data disaggregated by economic status. Countries were more likely to publish analytical reports containing data disaggregated by sex (56% of countries) than by socioeconomic status (38%).

Disaggregation across other data sources was more limited. In half of countries, census data included disaggregated population projections. Routine facility data about the delivery of services and treatment outcomes specific to health programmes were more often disaggregated by subnational region than by age or sex, with variation by indicator. For example, more than 80% of countries collected age- and sex-disaggregated data about antiretroviral therapy coverage, but less than 30% collected this information with regard to severe mental health disorders. About 55% of countries reported data about health workforce density and distribution disaggregated by subnational region.

Reporting practices should ensure the evidence generated from health inequality monitoring is reported in a timely manner that aligns with key policy- and decision-making periods. For example, health-sector reviews may be conducted annually or at other specified times (e.g. midterm or end of a health programme) and may be a prime opportunity for the development and uptake of evidence-informed recommendations.

Frequency and timing of health inequality monitoring

The frequency and timing of health inequality monitoring will be informed, in part, by the availability of new data. Depending on the data source, data may be updated with different frequency. For example, routine data from the health system may be collected on a rolling basis and made available on a weekly, monthly or annual schedule. Many recurring household health surveys collect data every three to five years, while censuses are often scheduled to occur every 10 years. Other sources may collect data on a sporadic or one-off basis.

Another consideration for the timing of health inequality monitoring pertains to the rationale for repeated inequality monitoring in a given context – that is, the time by which inequalities can be reasonably expected to change. For example, monitoring during a pandemic, where new data are rapidly available and the situation is rapidly changing, may need to be done on a frequent basis. Evidence about inequalities may inform changes, with immediate effect on the population’s health. On the other hand, monitoring inequalities in chronic health conditions, where the situation is slower to respond to changes, may need to be done on a less frequent basis. In some cases, health inequality monitoring can be aligned advantageously with policy cycles to maximize the impact of monitoring (see Chapter 8).

The frequency of inequality monitoring may also be contingent on the opportunity for meaningful engagement with relevant stakeholders, including communities and groups. For example, community-led monitoring efforts require the active involvement of community members and stakeholders, aiming to align monitoring activities and outputs with their needs and priorities. On these terms, inequality monitoring fosters a shared sense of ownership and accountability (see Annex 3).

Example: embedding inequality monitoring in immunization programmes

The importance of addressing inequalities in immunization is emphasized in global immunization initiatives, including the United Nations SDGs (9), the WHO Immunization Agenda 2030 (20), Gavi strategies (21), and the Equity Reference Group for Immunization (22). The evidence generated from inequality monitoring provides important inputs to guide the planning and implementation of immunization activities globally, regionally, nationally and subnationally. Immunization programmes have made strides in integrating health inequality monitoring considerations as part of data collection, evaluation, reporting and planning activities.

Dedicated and collaborative efforts to advance the collection and analysis of data pertaining to immunization have led to deeper and more precise understandings of inequalities in immunization (23, 24). These efforts are driven in part by the monitoring obligations set out in the objectives, targets and indicators identified by global initiatives. For example, the Immunization Agenda 2030 calls for enhanced partnerships and people-centred approaches with local communities and representatives of disadvantaged groups, allowing for deeper understandings of local barriers and the changes needed in data and information systems (20). It also includes an objective specific to the use of data to map and track subnational inequality in unvaccinated children.

As another example, WHO has developed guidance on the use of behavioural and social driver tools to understand factors affecting the uptake of vaccines by different populations (25). Tracking data on the behavioural and social drivers of immunization offers insights that can help to close coverage gaps and advance equity.

Capacity-building support for health inequality monitoring activities is evident in initiatives such as the Zero-dose Learning Hubs established by Gavi (26). (In this context, “zero-dose” describes children who have not received their first dose of the diphtheria, tetanus toxoid and pertussis vaccine.) The Learning Hubs serve as a global resource “to increase access to key measures, tools, and evidence; improve evidence generation aligned with the Identify–Reach–Monitor–Measure–Advocate framework; and improve synthesis, dissemination, sharing, and ultimately use to improve immunization equity” (27). The mandate of the Learning Hubs includes providing collaborative capacity-strengthening, technical assistance and mentorship to identify and resolve challenges.

The results of inequality monitoring in immunization should be considered at multiple strategic points to maximize potential for impact. They should be considered during programme reviews and planning. Expanded Programme on Immunization (EPI) reviews (also referred to as a National Immunization Programme reviews) are comprehensive assessments of the strengths and weaknesses of an immunization programme at the national, subnational and service-delivery levels (28). A desk review occurs early in the EPI review process and includes inequality monitoring to help identify field sites to be visited and equity issues to be addressed.

Strategies such as reducing missed opportunities for vaccination (29) and tailoring immunization programmes (30) can use the findings of inequality monitoring to help identify underlying causes of inequities. Any proposed equity-oriented immunization interventions should be included in national immunization strategies to improve the likelihood of the activities being budgeted, planned and implemented. Thus, considerations of the results of inequality monitoring, particularly for EPI reviews, should be conducted before the immunization programme strategic planning cycle.

Gavi places a heavy emphasis on targeting and tailoring its support to the people most in need, namely, zero-dose and under-vaccinated children and missed communities. Inequality monitoring and analyses can prove foundational to informing Gavi applications and review processes.

For countries eligible for support from Gavi, another opportunity to integrate equity considerations into programmes and plans are Gavi application and review processes (31). In support of applications for Gavi support for health systems strengthening, countries undertake a full portfolio planning process, with support from partners to detail goals, objectives, activities and requests for financing, including how immunization targets will be reached (32). More recently, countries may apply to Gavi for dedicated Equity Accelerator Funding to support efforts to reach zero-dose children and missed communities (33). The full portfolio planning and Equity Accelerator Funding applications require a situational analysis that includes equity-focused analyses, including geographic distributions, key populations (e.g. conflict-affected and nomadic populations), and gender barriers to immunization (34). Joint appraisals are annual in-country multistakeholder reviews of the implementation progress, performance and results across Gavi support to the country. Although not as comprehensive as holistic EPI reviews, joint appraisals offer a key opportunity to review successes and challenges, agree on programmatic priorities for the coming period, and in some cases revisit and potentially reprogramme Gavi support to communities and populations most in need.

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