Who creates global health data?
- National governments maintain health information systems to provide data to inform and evaluate their health programmes. The ministry of health shares data with other sectors and works closely with the national statistical office. Governments share their official data through the World Health Organization (WHO) and other United Nations (UN) agencies. They work with the stakeholders below.
- Civil society organisations are active in health-care and social and economic aspects of development and often generate data as a product of these activities. They advocate for and evaluate health programmes, generally from the users’ perspective. By networking, they contribute to global advocacy, for example, demonstrating health inequalities and the need to address social determinants of health.
- Non-governmental organisations (NGOs), including faith-based organisations, collect data as part of their health-related activities and contribute to strengthening local data systems. International NGOs also share data and evaluate their programmes across countries. Some NGOs provide support to strengthen statistical and health information systems.
- Academic, research and training institutions undertake local and multi-country research, provide technical advice and training, analyse and disseminate health-related statistics and contribute to programme evaluation. They participate in international technical advisory groups, develop global estimates and provide guidance on disease-specific monitoring and evaluation.
- The private and business sectors are present in countries and collect data on the health workforce and the communities in which they operate. Many companies integrate corporate responsibility into their business operations, and lever technological, business and scientific expertise to benefit health and data systems.
- Public and philanthropic donors including, for example, foundations and research councils, provide financial support for projects that involve research and health information system strengthening in their own countries and internationally, and support research, including multi-country studies.
- Multi-lateral governmental development and financial agencies working at global, regional and country levels, such as the WHO, UN Children’s Fund (UNICEF), the UN Statistics Commission (UNSD), the World Bank Group (WB), International Monetary Fund (IMF), regional development banks and the Organisation of Economic Co-operation and Development (OECD) provide grants and loans for development of health-related data and statistics. They also collect and disseminate data, and develop standards for information and statistical systems and data quality.
- Donor governments, mostly belonging to the OECD, provide bilateral development assistance to low- and middle-income countries and support for information system strengthening and data collection programmes and supervise evaluation of the health programmes they support.
- Public-private partnership and funds, such as Gavi the Vaccine Alliance and the Global Fund to fight Aids Tuberculosis and Malaria, provide grants and technical support to countries to generate high-quality data in their focus areas as part of their ongoing monitoring and evaluation processes.
- Global and regional networks and partnerships coordinate multiple stakeholders to promote integrated approaches to health challenges shared by several countries. Whereas most partnerships, such as Stop TB or Roll Bank Malaria, address particular health issues, some focus on data. Countdown to 2030 tracks coverage of health interventions proven to reduce maternal, newborn and child mortality.
The Health Data Collaborative promotes collaboration among donors and partners in support of country-led data governance, and development of national health sector and health information plans, unified digital health data architectures and common investment frameworks.
The Global Partnership for Sustainable Development Data focusses on the use of data to improve policymaking and service delivery, increase accountability and promote entrepreneurship for better development.
In the statistics community, the Partnership in Statistics for Development in the 21st Century (PARIS21) brings together national statistics offices and multi-lateral, bilateral and financial agencies to support capacity development, advocate for the integration of reliable data in decision-making, and coordinate donor support to statistics.
How agencies create global health data
In the sections below, we describe five essential core activities by which these actors transform country health-related data into global health data, indicators and evidence
- Country production and use of data, indicators and evidence, using standard definitions, concepts and methodologies.
- Global reporting of data by governments through the WHO and other UN agencies, that is: notifiable diseases and public health emergencies of international concern; deaths and cause of death; disease specific data; and Sustainable Development Goal (SDG) indicators.
- Cross-country creation and use of data by generating data and evidence across countries and across programmes, and developing global health estimates.
- Global sharing of data, estimates and evidence by publishing databases, open data and evidence, and synthesising evidence for policy advocacy and action.
- Global support and guidance for maintaining information systems and data standards by setting standards for systems and indicators, and providing financial and technical support to build systems.
Country production and use of data
We have described the country production and use of data on the country production and use of data page.
Governments maintain data infrastructures and collect and report data and official statistics as part of a broader national statistical system. The ministry of health collects routine administrative data. The ministry works with the national statistical office to design and implement national health household surveys. It also notifies births and deaths to the civil registry and provides information on causes of death.
The national statistical office undertakes the census on which the health and other sectors depend for demographic data. Using standard definitions and methods of data collection, the ministry of health and the national statistical office share data globally with their UN counterparts.
All ministries work together to collect data and report indicators for the SDGs. Academic institutions, civil society and non-governmental organizations operate independently to create data and evidence, promote accountability, and form local networks to advocate for and address key issues.
Global reporting and exchanging of data
Minimum official data reporting requirements by countries to the WHO now include the following:
Diseases and public health emergencies
The International Health Regulations (IHR) require WHO member countries and territories to report all cases of
- Smallpox; Poliomyelitis due to wild type poliovirus; Human influenza caused by a new subtype; Severe acute respiratory syndrome (SARS)).
- Any events that constitute a Public Health Emergency of International Concern (PHEIC).
All signatories must develop minimum core public health capacities, defined as ‘the capacity to detect, assess, notify and report events’ and ‘the capacity to respond to promptly and effectively to public health risks and PHEICs’.
In 2015, the WHO reported that 43 per cent of the 196 IHR States Parties had obtained extensions to be able meet IHR core capacity requirements.
In 2019, the WHO Director General declared the coronavirus COVID-19 to be a PHEIC. The subsequent COVID-19 pandemic demonstrated the centrality of data to maintaining national, regional and global health security. It also highlighted the need to build local capacity to collect, spontaneously interpret and share data locally and internationally.
The WHO collates the information it receives from countries and publishes summaries for each disease on its website
Deaths and cause of death
Member States must report data annually to the WHO on mortality by age, sex and cause of death classified using the International Classification of Disease (ICD). WHO maintains a Mortality Database of these data as reported by Member States from their civil registration systems. This site provides some details about the data and their analysis.
The WHO and partners also use mortality and cause-of-death data to provide estimates for:
- Life expectancy at birth; healthy life expectancy at birth; maternal mortality ratio; under five mortality rate; neonatal mortality rate.
- Probability of dying from cardiovascular diseases, cancer, diabetes, or chronic respiratory diseases between age 30 and exact age 70 years; suicide, homicide and road traffic mortality rates.
- Mortality rates attributed to household and ambient air pollution, attributed to unsafe water and sanitation services, and from unintentional poisoning.
- Death rates due to natural disasters and from major conflicts.
Disease specific data
National disease focused programmes compile data from health facilities, surveillance systems and disease registries and share data and indicators with development partners at regional and global levels. For example,
- National malaria control programmes report data on malaria cases and deaths in health facilities, and from national malaria surveillance systems. They also report on the distribution of insecticide-treated bed nets, sales of rapid diagnostic tests, treatment courses distributed and findings from local household surveys. The WHO compiles these data and disseminates the information in its annual World Malaria Report.
- Annual updates on the HIV epidemic draw on multiple sources of data reported by National AIDS Control Programmes (NACPs). These include:
- HIV testing during antenatal care.
- Anonymised HIV testing in sentinel clinics.
- Prevalence surveys in particular population such as sex workers and men who have sex with men.
- Reported cases of HIV reported by medical doctors.
The NACP collates the data with demographic data using the Spectrum software to come up with a comprehensive picture of the national HIV epidemic, including estimates of prevalence, incidence and mortality. The NACP shares the national estimates with UNAIDS and the WHO and these provide the basis for regional and global estimates.
Sustainable Development Goal indicators
The Inter-agency and Expert Group on SDG Indicators (IAEG-SDGs) – composed of Member States and regional and international agencies as observers – has developed a global indicator framework with recommended data sources for each of the 232 indicators.
The UNSD coordinates global SDG reporting, in collaboration with multilateral agencies responsible for specific mandates. the WHO , UNICEF and the UN Population Fund (UNFPA) share global reporting on the health-related SDGs.
The annual SDG indicators report does not generally include data for individual countries, instead reporting regional and/or sub-regional aggregates calculated from national data by the relevant agencies. Each country also develops a SDG report following UN guidelines that promote country-led, transparent, and participatory processes.
Cross-country creation and use of data
Generating data and evidence across countries
Global and regional development agencies coordinate and support multi-country and regional studies and surveys; commission cross-cutting reports and conduct cross-country analyses. Academics, private and non-governmental organizations support these studies and network to conduct independent multi-country and regional studies, and reports.
The United States (US) Agency for International Development (USAID) supported Demographic and Health Survey (DHS) programme has established an HIV/AIDS Survey Indicators Database that facilitates graphing and mapping of HIV-related indicators and comparisons with other population and health indicators from DHS surveys. Included are indicators to monitor the goals set at the UN General Assembly Special Session on HIV/AIDS, the Millennium Development Goals (MDGs), and strategic goals of the President’s Emergency Plan for AIDS Relief (PEPFAR). As of 2018, the database hosts 266 surveys – mainly from the DHS, Multiple Indicator Cluster Surveys (MICS), Reproductive Health Surveys (RHS), Sexual Behavior Surveys (SBS), and Behavioral Surveillance Surveys (BSS).
The WHO STEPwise approach to Surveillance (STEPS) is a simple, standardized method for collecting, analysing and disseminating such data. The three step approach consists of: 1) behavioural questionnaire (diet, smoking, physical activity); 2) physical measurements (blood pressure, height, weight); and 3) biochemical measurement (blood glucose, cholesterol etc.).
Generating data and evidence across programmes
International partners who support multi-country programmes evaluate their investments. This includes the WHO, other United Nations agencies, international partnerships, multi-lateral and bi-lateral donors, global funds, foundations, and international non-governmental, and may involve academic institutions and independent consultants.
International agencies have developed reporting standards for indicators to expedite comparison across countries and time periods, and encourage countries to modify their health information systems to comply. Because development partners bring technical expertise and funding to the table, they influence which data countries collect and the methods they use to assess, compile and disseminate data. Countries have strong incentives to construct their health information systems around donor priorities.
Generating global health estimates
The WHO and the UNFPA began making global estimates shortly after World War II, focussing largely on population size, fertility and mortality. Other agencies have taken on active roles in estimation, for example:
- UNICEF and the WHO for infant and child mortality.
- UNFPA for fertility and contraception.
- UNAIDS and the WHO for HIV/AIDS; the WHO for tuberculosis.
- WHO, UNICEF, UNFPA and the WB for maternal mortality.
- WHO and UNICEF for nutritional status.
The process of estimation can add value to country reported data. This includes: checking compliance with global statistical standards; verifying the use of international indicator definitions; harmonizing data where necessary using standard conversions and peer-reviewed methodologies; and filling data gaps.
Academic institutions contribute significantly to developing estimation methods. Academics participate in independent advisory and technical reference groups set up in specific measurement areas, including, for example: HIV/AIDS; tuberculosis; malaria; maternal health; and child health epidemiology. These groups not only provide the UN system with valuable technical expertise but also a degree of independence and objectivity.
A striking development in health estimation has been the ongoing work to quantify for all countries and all diseases, the total burden of mortality and disability. This started in 1993 with the World Development Report, Investing in health and was followed by updates by the WHO up to 2004. Since 2013, the Institute for Health Metrics and Evaluation (IHME) has regularly produced estimates of the global burden of disease (GBD) for global, national and, increasingly, subnational levels. The GBD estimates are widely used by development agencies, funds, foundations, NGOs, researchers and health programmes and are hugely influential in determining global health policy.
Global sharing of data and information
Publishing databases, open data and evidence
The WHO publishes World Health Statistics, which summarises data available to the organization on a range of topics, including the health-related SDGs. The annual update is part of the WHO Global Health Observatory (GHO), which issues regular analytical reports on the current situation and trends for priority health issues and maintains a portal to track universal health coverage. The WHO and the Institute of Health Metrics and Evaluation publish Global Burden of Disease estimates. Several WHO Regional Offices have also developed regional observatories and data compilations.
The UNSD which collates social and economic statistics, maintains operating procedures for major statistical activities and coordinates reporting of all indicators for the SDGs publishing them on the UNData site. The WB also collates most sectoral and economic indicators on its open data website.
Development agencies’ programmes report progress about target groups – such as infants, children and reproductive aged women – or target health concerns – such as maternal mortality, HIV/AIDS, malaria, tuberculosis, or violence.
Countries use global data to benchmark their performance across priority indicators against those of other countries or global and regional averages. Such comparisons can be risky and counterproductive if they are based on inadequate data or analysis. They can even result in inappropriate policy responses; as the WHO found when it ranked countries according to health system performance in the World Health Report 2000.
Synthesising and communicating evidence
Strong structures, policies, and procedures help institutionalise and sustain demand for data and statistics and their use to underpin policy and practice. But, data alone are insufficient to change entrenched positions and the mind-set of decision makers about the necessity and feasibility policy action. Medical journals can be pivotal in changing attitudes because they are perceived to encapsulate the best available evidence and knowledge. However, their readership rarely includes policy makers.
For years, policymakers perceived health to be a cost to the economy. To turn this perception on its head and position health spending as an investment with high returns, WHO, the WB and health leaders around the world established the Global Commission on Macroeconomics and Health in 2001. The success of the Commission’s format—as a forum for innovative thinking on specific health topics based on careful analysis of available data—was such that it has since been replicated multiple times.
For example, the 2005–08 WHO Commission on the Social Determinants of Health was highly influential in drawing attention to the importance of including socio-economic determinants and inequities in all data analyses. Commission reports are published in the medical journal, bringing together technical experts, data specialists, policy advocates to develop strategies to support evidence-based decision making.
Global support and guidance
Setting standards for systems and indicators
Responsibility for data integrity cuts across all the WHO’s core functions, that is:
- Monitoring the health situation and assessing health trends.
- Setting norms and standards and promoting and monitoring their implementation.
- Providing technical support, catalysing change, and building sustainable institutional capacity.
- Shaping the research agenda and stimulating the generation, translation and dissemination of valuable knowledge.
- Articulating ethical and evidence-based policy options; and providing leadership on matters critical to health and engaging in partnerships where joint action is needed.
The UNSD, which brings together representatives of national statistical systems as well as international agencies, is the highest decision-making body for international statistical activities and oversees the work of the UNSD. UNSD compiles and distributes global statistical data and information, sets standards for and coordinates statistical activities and supports national efforts to strengthen statistical systems.
Just as ministries of health work within their national statistical systems, the WHO works within this international statistical system along with other UN agencies that collect health-related data such as UNAIDS, UNICEF, UNFPA, the UN Development Programme (UNDP) and the WB. This international statistical system helps countries to adopt harmonized concepts, definitions and classifications. This enhances international comparability of statistics – essential for monitoring international commitments such as the SDGs.
UN member states have, through their national statistics agencies, agreed the Fundamental Principles of Official Statistics as universal standards by which producers of official government statistics should operate. The principles build on the premise that trustworthy official statistics are indispensable to democracy. The ten principles state, inter alia, that statistical agencies should: be independent, impartial, follow scientific principles and ethics in data collection, analysis and interpretation; maintain data security and respect individual data confidentiality; and coordinate among country and international statistical agencies to ensure consistency and efficiency of statistical systems. The principles are often used as a framework to assess the performance of national statistics offices.
The UNSD has also developed standards for the international statistical system. The Principles Governing International Statistical Activities include, inter alia, ensuring free and open public access to key statistics; using strictly professional considerations for decisions on methodology, terminology, data dissemination and presentation; making a clear distinction, in statistical publications, between statistical and analytical comments and policy-prescriptive and advocacy comments; and having a published policy ensuring that statistical functions must be impartial, based on professional standards, and independent from political influence.
Several organizations offer frameworks for maintaining and assessing data quality. The OECD has developed statistical standards, guidelines, and best practices specifically for development indicators. These emphasise the importance of metadata – definitions, sources, data collection methods etc. – that should accompany all data reports, thus enabling users to evaluate data quality and fitness for use.
Providing financial and technical support
International agencies and donors provide financial and technical support for country data collection. Many support household surveys as the preferred data source. Agencies also support countries to strengthen health management information systems, civil registration and vital statistics systems, and censuses.
The WB manages the Trust Fund for Statistical Capacity Building (TFSCB), a multi-donor trust fund that is intended to improve the capacity of developing countries to produce and use statistics. The TFSCB works closely with PARIS21 to advance coordinated international efforts to improve statistics globally. However, few countries have used the THSCB for health statistics.
Strategies to build capacities in countries are crucial so that they can be self-sufficient across all components of HIS. Capacity building includes training workshops and technical support to national statistical agencies, ministries of health, public health institutes, and academia. Some development partners provide capacity development by way of partnerships, for example north-south collaboration and peer-to-peer learning. Statistics Norway, for example, has a long-running programme of cooperation with statistical agencies in LMICs.
UN agencies and development partners, especially at regional and country levels, organise inter-country training workshops on specific themes. Regional development banks provide technical support and capacity development for statistics.
The complete chapter on which we based this page:
Macfarlane S.B., AbouZahr C., Tangcharoensathien V. (2019) National Systems for Generating and Managing Data for Health. In: Macfarlane S., AbouZahr C. (eds) The Palgrave Handbook of Global Health Data Methods for Policy and Practice. Palgrave Macmillan, London.
All WHO member states have signed up to the International Health Regulations (IHR) 2005
The WHO maintains the the International Classification of Disease (ICD) which defines the universe of diseases, disorders, injuries and other related health conditions, listed in a comprehensive, hierarchical fashion.
The UN has agreed a global indicator framework to measure the SDGs
International agencies have developed Global Reference List of 100 Core Health Indicators
UN member states have, through their national statistics agencies, agreed the Fundamental Principles of Official Statistics
The UNSD has also developed standards for the international statistical system. The Principles Governing International Statistical Activities
The OECD has developed statistical standards, guidelines, and best practices
The UNSD which collates social and economic statistics, maintains operating procedures for major statistical activities and coordinates reporting of all indicators for the SDGs publishing them on the UNData site.
The annual World Health Statistics report publishes the latest global estimates of health related data.