OIM - Migration Health Data - An IOM Primer de 2025

MIGRATION HEALTH DATA An IOM PrimerThe opinions expressed in this publication are those of the authors and do not necessarily reflect the views of the International Organization for Migration (IOM). The designations employed and the presentation of material throughout the publication do not imply expression of any opinion whatsoever on the part of IOM concerning the legal status of any country, territory, city or area, or of its authorities, or concerning its frontiers or boundaries. IOM is committed to the principle that humane and orderly migration benefits migrants and society. As an intergovernmental organization, IOM acts with its partners in the international community to: assist in meeting the operational challenges of migration; advance understanding of migration issues; encourage social and economic development through migration; and uphold the human dignity and well-being of migrants.

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PUB2025/042/RMIGRATION HEALTH DATA

An IOM PrimerMIGRATION HEALTH DATA: An IOM Primer i

ACKNOWLEDGEMENTS

Original Concept: Kolitha Wickramage Primer Design and Methodology: Elisa Mosler Vidal and Kolitha Wickramage Writing original draft: Elisa Mosler Vidal

T echnical review: Caterina Giudi, Laura Bartolini, Marina Manke, Estefania Guallar, Aiko Kaji, Kit Leung, Nikki Herwanger, KC Radheshyam Krishna, Mary Ann Bautista, Janice Lopez and Sweetmavourneen Agan.MIGRATION HEALTH DATA: An IOM Primer ii

CONTENTS

ACKNOWLEDGEMENTS I

ACRONYMS III

SECTION A: INTRODUCTION 1

Why migration health data? 1 Existing guidance 2 This primer 3

SECTION B: BACKGROUND 5

Relevant frameworks 5 Key challenges and opportunities 5 Key data sources 8

SECTION C: KEY STEPS TO TAKE ACTION 16

1. Develop institutional framework and coordination mechanisms 18

2. Conduct a data mapping exercise 22

3. Design a migration health data strategy 25

4. Prioritize data protection 28

5. Standardize migration variables used in data collection 34

6. Integrate migration module into selected data instruments 38

7. Assess opportunities for data linkage 42

8. Assess progress made on migration health data 45

SECTION D: CASE STUDIES 48

ANNEXES 52

Annex 1: Overview of global and regional frameworks relating to migration health data 52 Annex 2: T ool 1: T erms of Reference (TORs) template for consultants/staff 55 Annex 3: T ool 3: TOR for technical working group on migration health data 61 Annex 4: T ool 5: Data mapping template 65 Annex 5: Additional migration variables and model questions 67 REFERENCES 71MIGRATION HEALTH DATA: An IOM Primer iii ACRONYMS CRVS Civil registration and vital statistics CSO Civil Society Organizations DHS Demographic and Health Survey DTM Displacement Tracking Matrix EEA European Economic Area ePHR electronic personal health record ESS European Social Survey EU European Union GDPR General Data Protection Regulation HIS Health Information System IDP Internally Displaced Person ILO International Labour Organization IOM International Organization for Migration LFS Labour Force Survey MHADRI Migration Health and Development Research Initiative MHMIS Migration Health Management Information System MICS Multiple Indicator Cluster Survey NSO National Statistical Office OECD Organisation for Economic Cooperation and Development PAHO Pan American Health Organization PISA Programme for International Student Assessment RTS Regional Thematic Specialist SDG Sustainable Development Goal SDH Social Determinants of Health TWG technical working group UN DESA United Nations Department of Economic and Social Affairs UNFPA United Nations Population Fund UNHCR United Nations High Commissioner for Refugees WHO World Health OrganizationMIGRATION HEALTH DATA: An IOM Primer 1

SECTION A: INTRODUCTION

WHY MIGRATION HEALTH DATA?

Against ever-evolving migration and global health dynamics, promoting the health of migrants whilst addressing the wider dimensions of migration health has become increasingly complex. T o do this, evidence is key. Quality, timely and reliable disaggregated data is needed on the different ways in which migration affects health, as well as how health affects migration. Across migration health topics, from everything to inequalities in health-care access to mobility of health workers, timely and quality data is key to inform

disaggregated data is needed on the different ways in which migration affects health, as well as how health affects migration. Across migration health topics, from everything to inequalities in health-care access to mobility of health workers, timely and quality data is key to inform policies and programmes. However, in reality, data is scarce and policy opportunities on migration health are constrained by a lack of timely and quality information. For example, it is not always clear which diseases migrants have a higher burden of compared to non-migrants, or which ones migrants may be at greater risk of than other groups. This lack of clarity makes it challenging to design effective public health interventions for migrants. Common data challenges include low integration of migration variables in health data collection, fragmentation of data sources, and many others. Migration health data remains weak at all levels, with particular gaps on the health of migrant children, mental health and well-being of migrants, disability and migration, and other topics. Analyses from the World Health Organization (WHO) and International Organization for Migration (IOM) reveal that little to no Sustainable Development Goal (SDG) data related to health is disaggregated by migratory status (WHO, 2022b; Mosler Vidal, 2021). Moreover, there are significant data and research gaps on migration health in low-income countries (Sweileh et al., 2018). Better data is essential to champion the health of migrants, so that they can enjoy their universal fundamental right to health through inclusive health systems. Inclusive health policies enhance overall public health and to inform these, a strong evidence base that includes data on migrants as a key population subgroup is necessary. Data on the health of migrants is needed to ensure accessible health services for migrants and for public health preparedness, response and planning. Improving migration health data can help ensure that migrants have access to quality health care, improving their health outcomes and integration prospects. Several benefits of health system inclusivity, which

ensure accessible health services for migrants and for public health preparedness, response and planning. Improving migration health data can help ensure that migrants have access to quality health care, improving their health outcomes and integration prospects. Several benefits of health system inclusivity, which can only be achieved with stronger data, have been proven. Equal health-care access is linked to growth and can increase employment and productivity, and restricting access to refugees is expensive in the long-term, while extending care is linked to savings (Koczan et al. 2021; Trummer et al., 2016). Data is also needed to monitor progress towards national goals, such as to track progress on disease control programmes. There is increasing recognition by national disease prevention and control programmes of the need to adopt migrant-inclusive strategies, asMIGRATION HEALTH DATA: An IOM Primer 2

Section A: Introduction some migrant populations pose a challenge to disease elimination campaigns if they are hard to reach in terms of data collection and/or treatment (Adams et al., 2022;  WHO, 2015).

Moreover, better data is needed to monitor progress towards global goals on both migration and health; for example, to make cross-country comparisons of progress towards the  2030 Agenda for Sustainable Development (2030 Agenda) and its calls to “leave no one behind,” and the Global Compact on Safe, Orderly and Regular Migration. Without this data, efforts to address migration health are constrained. Not only is it impossible to champion the health of migrants without strong data, but it can negatively impact the population at large. For example, data on all population groups, including migrants, is necessary for effective infectious disease monitoring and control (WHO, 2022a). What is counted counts; without robust information systems on migration health, it is difficult to make the case to prioritize migrants in global and public health agendas, in turn to identify relevant financing gaps, fundraise for these, and design and implement related

control (WHO, 2022a). What is counted counts; without robust information systems on migration health, it is difficult to make the case to prioritize migrants in global and public health agendas, in turn to identify relevant financing gaps, fundraise for these, and design and implement related efforts to support migration health. EXISTING GUIDANCE Scattered guidance is available on migration health data, developed by different stakeholders. Several articles and reports explore the data landscape, often focusing on Europe, outlining key issues within this and proposing recommendations. Examples include Integration of migrant and refugee data in health information systems in Europe: advancing evidence, policy and practice (Bozorgmehr et al., 2023), and What is the evidence on availability and integration of refugee and migrant health data in health information systems in the WHO European Region? (Bozorgmehr et al., 2019). There is some guidance specifically on improving migration health data; notably, WHO’s Collection and integration of data on refugee and migrant health in the WHO European Region: technical guidance. This provides actionable steps and considerations to improve data on migration health, relating again to Europe. There is much guidance from the global health domain on improving health data and information systems; for example, the WHO’s Toolkit for Routine Health Information Systems data and the Health Metrics Network (HMN)’s Framework and standards for country health information systems . However, this generally does not make links to migration health or the wider migration governance domain. There is statistical guidance on migration specifically; for example, the United Nations Department of Social and Economic Affairs’ (UN DESA) Handbook on Measuring International Migration through Population Censuses developed through its Statistics Division . This also includes several documents from IOM, such as Leave no Migrant Behind: The 2030 Agenda and Data Disaggregation, Gender and Migration Data: A Guide for Evidencebased, Gender-responsive Migration Governance , Essentials of Migration Management 2.0 which

its Statistics Division . This also includes several documents from IOM, such as Leave no Migrant Behind: The 2030 Agenda and Data Disaggregation, Gender and Migration Data: A Guide for Evidencebased, Gender-responsive Migration Governance , Essentials of Migration Management 2.0 which includes modules on health and data, and several online courses related to migration data from different regions. Similarly, while some of these documents make some mention of health, they do not usually relate to health and cannot directly support efforts to improve migration health data.MIGRATION HEALTH DATA: An IOM Primer 3

Section A: Introduction Existing guidance is often geographically biased, and focuses almost exclusively on either health or migration and not migration health.

Standardized approaches and technical guidance to assist in improving the collection, analysis and 1 In contrast to data on migrant health, which refers more narrowly to the health of several legal categories of migrants, data on migration health refers to information beyond this, on the wider nexus between migration, mobility and health. use of migration health data are lacking. Until now, there has not been a practical manual on how to improve migration health data in a range of settings. THIS PRIMER The objective of this primer is to guide practitioners in supporting countries to improve migration health data at country level. How to use this primer depends on the context. It can be used as a step-by-step guide to design and implement a dedicated initiative to improve migration health data, or individual steps may be adapted and implemented to suit needs. The primer can also be used for reference to integrate migration health data considerations into other health or data-related projects. Target users. This primer is for any practitioner interested in migration health data, both health and non-health specialists. It is designed to be relevant in diverse settings experiencing different migration dynamics, across geographies and income levels. It relates to a range of migrant subgroups, including international and internal migrants, as well as internally displaced persons (IDPs) and refugees.

and non-health specialists. It is designed to be relevant in diverse settings experiencing different migration dynamics, across geographies and income levels. It relates to a range of migrant subgroups, including international and internal migrants, as well as internally displaced persons (IDPs) and refugees. Scope and limitations. Overall, this primer focuses on guiding technical cooperation initiatives to improve availability and use of migration health data. It provides user-friendly information and tools to guide the design and implementation of capacity development projects related to migration health data, signposting to other resources along the way. While it makes reference to several global frameworks, it is not intended to be a guide in using migration health data to monitor these. It does not provide in-depth technical advice, for example on which software or information systems to use in data collection and analysis. In this context, migration health data is any data relevant to the nexus between migration and health. This could mean data on the health status or outcomes of migrants and what factors may shape this, health coverage, policy or other data relating to the extent of access and take-up of health-care services by different types of migrants, health workforce mobility, how diseases spread along migration corridors, and many other topics. Migration health data can be quantitative, such as epidemiological profiles on refugee populations, or qualitative, such as interview data exploring migrants’ practical issues accessing health care. 1 Note that this primer does not exhaustively discuss data on all migration health dimensions, for example health workforce mobility and signposts to other resources where appropriate. Section B presents background information and the state of play in migration health data. This outlines relevant frameworks from both the migration governance and global health domains, describes key challenges and opportunities in the data landscape and introduces key migration health data sources. Section C focuses on key practical steps to improve migration health data.MIGRATION HEALTH DATA: An IOM Primer 4

Section A: Introduction This outlines eight steps to develop an

migration governance and global health domains, describes key challenges and opportunities in the data landscape and introduces key migration health data sources. Section C focuses on key practical steps to improve migration health data.MIGRATION HEALTH DATA: An IOM Primer 4

Section A: Introduction This outlines eight steps to develop an institutional framework and coordination mechanisms, conduct a data mapping exercise, design a migration health data strategy, prioritize data protection, standardize migration variables used in data collection, integrate a migration module into selected data instruments, assess opportunities for data linkage, and assess progress made on migration health data. There are several tools to guide action. Section D presents examples of initiatives for improving migration health data from around the world that put into practice some of the steps.MIGRATION HEALTH DATA: An IOM Primer

5

SECTION B: BACKGROUND RELEVANT FRAMEWORKS 2 Others may refer to health management information systems (HMIS) or health information management systems (HIMS).

Several global and regional policy frameworks, action plans and strategies have recognized that quality information on migration health is scarce, and highlighted the need to improve this. A select few relate to migration health specifically; most come from either the global health or migration governance domains. For example, the WHO Global Action Plan on promoting the health of refugees and migrants, 2019–2030 includes a priority to strengthen health monitoring and health information systems, “to ensure that information and disaggregated data at global, regional and country levels are generated and that adequate, standardized, comparable records on the health of refugees and migrants are available to support policymakers and decision-makers to develop more evidence-based policies, plans and interventions.” The Report on the Third Global Consultation on the health of refugees and migrants presents several recommendations to harness the power of research, data and innovation to improve the health of refugees and migrants. Several regional frameworks are also key. For example, the African Union’s Migration Policy

and interventions.” The Report on the Third Global Consultation on the health of refugees and migrants presents several recommendations to harness the power of research, data and innovation to improve the health of refugees and migrants. Several regional frameworks are also key. For example, the African Union’s Migration Policy Framework for Africa and Plan of Action 2018–2030 recommends to conduct analyses and needs assessments on the health of migrants and strengthen research and data collection on the relationship between health and migration. When designing and implementing a migration health data initiative, it is important to connect efforts to relevant national, regional and global frameworks that can help provide a normative basis and/or boost political impetus. Additional frameworks and their relevance to migration health data are listed non-exhaustively in Annex 1. KEY CHALLENGES AND OPPORTUNITIES The evidence base on migration health faces several key challenges. Integration of data on migration into health information systems (HIS)2 is limited, meaning that in most countries, little regular data collection takes place on migrants’ health. Even in high income countries, there is often no systematic inclusion of migration variables within health or other data systems. This means that routine data collection on health, including through HIS, does not usually integrate migration variables – concretely, it does not include questions on whether respondents are migrants or not. ForMIGRATION HEALTH DATA: An IOM Primer 6

Section B: Background example, a review of 85 national Demographic Health Survey (DHS) found that a dedicated module with detailed migration information was only present in 12 of these (Corsi et al., 2012).

The lack of inclusion of migration variables results in aggregated data that makes it impossible to understand how key information, for example on morbidity and mortality, relates to migrants. As a result, migrants are largely invisible in official health data (Mosler Vidal and Wickramage, 2024). Where some disaggregation on migratory

in aggregated data that makes it impossible to understand how key information, for example on morbidity and mortality, relates to migrants. As a result, migrants are largely invisible in official health data (Mosler Vidal and Wickramage, 2024). Where some disaggregation on migratory status is available in health data, it normally does not allow for identification of different migrant subgroups such as refugees, labour migrants, international students, asylum-seekers and others. This limits policymakers’ understanding of migrants’ health; to support inclusive health policies, health data must be collected for different population groups, including migrants, and broken down to show this (Bozorgmehr et al., 2023). Despite there being many relevant data sources, their high diversity of approaches makes data interoperability difficult. Countries’ HIS are managed in diverse ways; for example, disease surveillance programmes across countries often use different information management systems. Data collection methods are not always consistent across disease programmes, and data sources may use definitions of migrants or migration variables that do not align, making comparison across sources within and across countries difficult (Kumar et al., 2022). One report examined refugee and migrant health data in Europe, finding that data was only available in 25 of 53 countries and in those, that there was high heterogeneity of approaches, with large differences in data availability and data sources used (Bozorgmehr et al., 2019). As a result, many valuable data sources are not always effectively integrated or utilized, and there is overall high data fragmentation. Separate data systems are common across settings, along with low crossministerial and cross-border data sharing. For example, migration health assessments hold key data but remain poorly analysed and usually unlinked to national health systems (Wickramage and Zenner, 2019; Wickramage and Mosca, 2014). Other datasets that may include information on migration, for example from national health

example, migration health assessments hold key data but remain poorly analysed and usually unlinked to national health systems (Wickramage and Zenner, 2019; Wickramage and Mosca, 2014). Other datasets that may include information on migration, for example from national health programmes on tuberculosis or malaria, may not be integrated into HIS. Many key data sources, such as population registers, censuses and household surveys, exclude hard-to-reach migrant groups who may have unique and sometimes particularly acute health needs. Collecting data on certain migrant subgroups, such as those living in remote areas or group dwellings, or those with substance abuse issues, is difficult. Data collection by health authorities may also be limited for some highly mobile individuals, such as nomads or temporary labour migrants, for whom regular interactions or treatment with authorities can be a challenge (African Union, 2021). Others, such as irregular migrants, may also avoid contact with authorities. Finally, many migrants face language, literacy and/or cultural barriers in migration health data collection, negatively impacting quality and quantity of data collected. In some cases, health data on migrants may be unreliable due to inaccurate disease reporting and underrepresentation. (Bozorgmehr et al., 2019). Collecting and using migration health data can raise significant data protection and ethical concerns. The protection and privacy of data must be upheld, as inappropriate data sharing could have serious consequences for some migrants, such as limiting access to health care and other services, or even deportation. While approaches that disaggregate data by migration variables, link data across systems or leverage big data are welcome steps to strengthen the migration health evidence base, these require strong data protection measures, through legal frameworks and other mechanisms.MIGRATION HEALTH DATA: An IOM Primer 7

Section B: Background Limited availability of migration health data is also related to practical and political challenges.

Many national stakeholders and institutions

migration health evidence base, these require strong data protection measures, through legal frameworks and other mechanisms.MIGRATION HEALTH DATA: An IOM Primer 7

Section B: Background Limited availability of migration health data is also related to practical and political challenges.

Many national stakeholders and institutions have limited capacity to collect quality, timely and reliable data. Data is usually collected by a range of actors working on different aspects of migration health; it can be difficult to identify all of these and establish effective coordination between them. There is usually little intersectoral coordination to improve data. This extends to stakeholders across sectors; there is low coordination between the health, migration governance and other policy domains, as well as between these and academia, the private sector and civil society. In some cases, although recommendations exist to improve migration health data, these are granted low political priority and various other political factors hinder their implementation (Bozorgmehr et al., 2023). Political emphasis being given to monitoring certain diseases only over a short time, rather than generating comprehensive evidence on migration health, can also make data availability patchy. Migration health data is also subject to common limitations of wider migration data. For example, some countries use different definitions of who is a migrant, which hampers data comparability and can impact access to health care (Hannigan et al., 2016). It can be challenging to create meaningful collaboration between migration data producers, such as NSOs, and data users, such as migration policymakers. Financing available to improve migration statistics is often limited. NSOs and other stakeholders often have few resources for migration data initiatives and this is not prioritized in statistical capacity development financing; this can also be the case for migration health data. Specific data sources present their own strengths and limitations, some listed below. For example, while many surveys collect rich data on health outcomes and social determinants of health (SDH), their sampling frames and/or sample sizes

capacity development financing; this can also be the case for migration health data. Specific data sources present their own strengths and limitations, some listed below. For example, while many surveys collect rich data on health outcomes and social determinants of health (SDH), their sampling frames and/or sample sizes may be inadequate to make data representative of migrant populations. There are also key opportunities related to migration health data. There is a very wide range of data sources – from surveys and censuses to administrative records on migration, birth and death registries, information from disease surveillance programmes, routine health-care data and many others – that can help policymakers understand migration health, if they included migration variables. There are more potential data sources to leverage than in many other topics within migration. Some of these may offer advantages – for example, the existence of longitudinal data that tracks outcomes over time is often more common in health than other sectors. Further, the potential for high-quality research and analysis is high; not only are large amounts of relevant data collected, but there are large existing global health and medical research communities that can help make sense of this and drive forward insights. Finally, ongoing developments in migration statistics could also support better data on migration health. A process is currently underway to revise the official recommendations on international migration, spearheaded by the Expert Group on Migration Statistics which developed a revised conceptual framework on measuring international migration and mobility. This proposes, for the first time in migration statistical guidance, a migration-related population category related to health. This recommends to measure health-related mobility, which includes “all persons who are not residents of the country but travel to the country to access health care services for less than the minimum duration required for residence” (UNSD, 2021). Thus some advances in migration statistics could help generate further efforts to improve migration health data.MIGRATION HEALTH DATA: An IOM Primer 8

Section B: Background KEY DATA SOURCES Countries collect migration health data in

services for less than the minimum duration required for residence” (UNSD, 2021). Thus some advances in migration statistics could help generate further efforts to improve migration health data.MIGRATION HEALTH DATA: An IOM Primer 8

Section B: Background KEY DATA SOURCES Countries collect migration health data in different ways; there is a wide heterogeneity of approaches even within continents (see Bozorgmehr et al., 2019). Commonly, migration health data may be