Health Information Systems and Migrant Health in Europe
- Louise Biddle, Louise BiddleHeidelberg University Hospital
- Kayvan BozorgmehrKayvan BozorgmehrBielefeld University, School of Public Health
- and Rosa JahnRosa JahnHeidelberg University Hospital
Ensuring the health of migrants and access to appropriate health services presents a challenge to health systems in the age of global migration. Reliable and timely information is key to decision-making in all sectors of the health system to ensure that health system goals are met. Such information is even more important among a mobile, sometimes rapidly changing, dynamic and heterogeneous migrant population. While health information systems (HIS) are crucial for effective functioning of other health system blocks as well as for evidence-informed decision-making, they are often sidelined in health system policy and development. Looking across the World Health Organization (WHO) European Region, HIS for migrants are deficient both in their overall availability and their integration into regular monitoring structures. Less than half of the 53 member states routinely report health data for refugees and migrants. Most of the routinely collected data on migrant and refugee health can be identified in countries with strong population-based records, with some good practice examples of well-integrated and high-quality health monitoring surveys, disease-specific registries, and “parallel” HIS in migrant-specific settings. Overall, however, HIS in the WHO European Region are not able to provide data of sufficient quality and comparability to be well integrated into regular health monitoring structures. The reasons for this can be highlighted by five key barriers to improved information systems for migrant health: barriers in recording data, standardizing data collection, harmonizing migrant indicators, producing high-quality data, and sharing information. Better integration can be achieved through increased multilateral collaboration for the harmonization of indicators, strengthening of governance frameworks for data-sharing and protection measures, and the increased use of currently underutilized data collection mechanisms, including health monitoring surveys and medical records from refugee reception facilities. These steps will remain essential for the adequate planning and provision of needs-based care for refugees and migrants.
Ensuring the health of migrants and that they have access to appropriate health services are key challenges to health systems in the age of global migration. Globally, 272 million persons live outside of their country of origin (IOM, 2019), a heterogeneous group including labor migrants, refugees, and asylum seekers. It is widely accepted that international migration flows will remain a reality across the globe, with all nations increasingly becoming origin, transit, and host countries. In 2017, the European Region of the World Health Organization (WHO) was home to 90.7 million international migrants (WHO, 2018). Reliable and timely information is key to decision-making in all sectors of the health system to ensure that health system goals (improved health, equity, efficiency, and responsiveness) are met through access to and coverage with high-quality health services (including preventive, promotive, curative, and rehabilitative care) according to the needs of a population (WHO, 2010). Such information is even more important among a mobile, sometimes rapidly changing, dynamic and heterogeneous migrant population. At the same time, this information can be particularly challenging to obtain for migrant groups by country health information systems (HIS).
HIS provide the fundamental basis for evidence-informed decision-making and have four key functions: (a) data generation, (b) compilation, (c) analysis and synthesis, and (d) communication and use (WHO, 2010). They collect data from health and other societal sectors related to health determinants, health system performance, and health status, “analyses the data and ensures their overall quality, relevance and timeliness, and converts the data into information for health-related decision-making” (HMN, 2008). Broadly, HIS is a subsystem of a health system and consists of data sources, policies, governance, human resources, and capacity for analysis and dissemination, as well as the intersection of these domains (HMN, 2008). Data sources can be grouped in four data collection methods (Box 1).
Box 1. Simplified Overview of Data Sources of HIS
Population registry and civil registration systems
Vital records (e.g., birth and death registries)
Medical records (utilization data of hospital and ambulatory care)
Claims data (from insurance companies)
Disease-specific registries (e.g., cancer registries)
Notification and surveillance systems*
Clinical case registries
Public health service records
Health monitoring surveys**
Population panels and cohorts
Note: *Routinely collected secondary data;
** Routinely collected primary data (excluding one-off data collection efforts e.g., in the scope of time-bound scientific studies).
While HIS are crucial for effective functioning of other health system blocks as well as for evidence-informed decision-making, they are often sidelined in health system policy and development. This is particularly salient as inequities in health and healthcare remain undiscovered in weak HIS that (implicitly or explicitly) do not allow for disaggregated analysis of population health by important social determinants, such as sex, socioeconomic status, and migration status. In the area of migrant health, several key documents, such as the Strategy and Action Plan for Refugee and Migrant Health in the WHO European Region, the Global Compact on Refugees, the Global Compact for Safe, Orderly and Regular Migration, and the WHO Global Action Plan to promote the health of refugees and migrants, note the urgent need for stronger data collection and reporting on migrant groups to overcome blind spots of HIS in this area. However, little systematic evidence exists on the availability of migrant health data in HIS in Europe, and on the use of such data for health reporting.
This article provides an overview on the availability of health data on refugees and migrants in HIS in Europe, and describes HIS use for migrant health research based on existing reviews in the field. A particular focus is placed on challenges of HIS to fulfil their health monitoring function due to barriers in integrating, recording, sharing, and harmonizing data on migrant health. Data availability, integration, and quality are affected by policies outside HIS or outside the health sector itself, as can be demonstrated by examples on health data for asylum seekers and refugees. This article highlights key challenges associated with the use of HIS for studying migrant health, and it identifies key policy options and requirements to move from fragmented HIS to more integrated, comparable, and harmonized migrant health data in Europe.
Availability and Use of Migrant Health Data in HIS in Europe
A Health Evidence Network (HEN) Series Report studied the availability and use of refugee and migrant health data in HIS in 53 countries of the WHO European Region (Bozorgmehr et al., 2019) by using a comprehensive literature review methodology. The review was conducted by screening 11,219 references, and it synthesized the evidence of 41 full-text studies and 696 abstracts. A main finding from the report was that less than half of the countries routinely collect data on the health of refugees and migrants (figure 1). Except in a few countries using population-based records, the existing data sources are often fragmented, as they focus on single diseases, have a limited geographic scope, or only capture information at the point of service use (Bozorgmehr et al., 2019).
Note: Color code: quintiles of the distribution of N = 696 reports by country.
Looking across the studies identified in the review, most of the routinely collected data on migrant and refugee health was identified in countries with strong population-based records (figure 1). Such records are particularly valuable because they often allow for a disaggregated analysis of health outcomes by country of birth, immigration status, or other types of migration indicators. For example, 24 of 27 countries in the European Union (EU) have death registries disaggregated by migrant status (Rechel et al., 2012).
A further advantage of population-based records is that they can enable linkage between different databases, allowing for the analysis of a broad range of exposures and outcomes. Figure 2 shows the distribution of scientific reports which have used HIS to analyze migrant health in the WHO European Region since 2000. The figure shows that most of the research has been conducted using a linkage of different data sources, and that both linked datasets and population-based records have the broadest range of health outcomes, covering communicable and non-communicable diseases, maternal health, mortality, and injuries.
The use of linkage studies has been most prominent in countries with centralized databases, especially in countries of the Scandinavian region (Bozorgmehr et al., 2019). However, linkage has also been employed in countries without centralized HIS to overcome challenges of fragmented databases. In Germany, for example, researchers have been able to link decentralized population registers with death registries to study migrant mortality (Ronellenfitsch et al., 2004). On the whole, however, linkage appears to be an underutilized tool in the field of refugee and migrant health for overcoming the challenges of fragmented HIS (Bozorgmehr et al., 2019).
NCD = Non-communicable disease; ID = Infectious disease
A prominent example of research with population-based data sources can be found in Denmark, where the Danish Civil Registration System has been used in migrant heath research for many years. The Danish Civil Registration System is an electronic, centralized, civil register, in which all people born to a mother already registered in the system, or who have been residing legally in Denmark for at least three months, are registered with a unique civil personal registration (CPR) number (Norredam et al., 2011). The system includes information such as address, date and place of birth, country of citizenship, kinship, civil status, and registered partnership, and covers a total of 9,484,792 individuals (Ronellenfitsch et al., 2004). This information can be accurately and cost-effectively linked via the CPR number to a wide range of individual-level registers, such as the Danish General Practice Database, the Danish Cancer Registry, or the Danish National Health Service Register. Therefore, many studies use the system as a tool in epidemiology, including in refugee and migrant health research, to perform follow-up studies, assess all-cause mortality, and establish comparison cohorts, family cohorts, control samples, or random samples for population surveys (Schmidt et al., 2014).
Other data sources identified in the WHO HEN report included disease-specific registries and health utilization data from healthcare facilities or insurance funds. Health utilization data is collected in hospitals and by specialist practices, as well as by health insurance providers, and gives insights into the health of individuals presenting at healthcare facilities.
A study on data collection practices in the EU identified 11 countries which include migration indicators in their health utilization data (Rechel et al., 2012). Of the countries in the WHO European Region, medical records or health service utilization data are most frequently used in Italy, Spain, and Sweden (Bozorgmehr et al., 2019), especially in the analysis of maternal health issues, infectious diseases, and mental health outcomes. Health records also include disease-specific registries such as national cancer registries, which are compiled based on health utilization data. Disease-specific registries have been used in the field of migrant health primarily for the analysis of infectious disease and non-communicable disease outcomes (figure 2).
These databases can be a very rich source of data to study migrant health, as they often include detailed longitudinal data on symptoms, diagnosis, treatment, and health outcomes. However, reliably identifying migrants can be a challenge if migrant status is not directly recorded. Furthermore, even in databases which do include migrant status, issues have been noted regarding the quality and reliability of this indicator (Mladovsky, 2009). Approaches to overcome this issue include the development of name-matching algorithms (Makarova et al., 2013) for the linkage of medical records with population-based databases. Finally, the indicators used to identify someone as being a “migrant” (e.g., country of birth, citizenship, legal status) can vary between systems, thus complicating identification of refugees and migrants within datasets, as well as comparisons between systems.
Notification and Surveillance Systems
Infectious diseases have been a long-standing concern for migration policies and migrant health research. Many national and international notification systems for infectious diseases thus allow for the disaggregation of data by migrant status. In the WHO European Region, 61 individual notification systems for infectious diseases have been used for migrant health research, comprising 25.2% of all data sources reporting evidence on migrant health. Data from notification systems were most frequently used in the United Kingdom and the Netherlands, and primarily addressed the outcomes of hepatitis, HIV, malaria, and TB (Bozorgmehr et al., 2019).
The WHO HEN report also identified research using international notification systems for infectious diseases. TropNet Europe, for example, is the largest European network on imported infectious disease surveillance, involving 75 specialized clinical sites in 18 European countries. In its objective to establish and sustain a sentinel surveillance of imported infectious diseases in Europe, it is supported by elaborate governance structures, including three committees (steering, network, and research). It collects data from patients with travel or migrant history who have presented for treatment at one of the participating surveillance sites (Jellinek et al., 2000).
Research using data from notification systems for infectious diseases, however, is complicated by a lack of standardization of migration indicators both within and across countries (Chu et al., 2013; Giorgi Rossi et al., 2017; Riccardo et al., 2015). Moreover, notification systems for infectious diseases are very limited in the scope of health issues which are reported (figure 2) and often lack information on relevant comorbidities and sociodemographic information, thus giving a highly incomplete picture of refugee and migrant health.
Health Monitoring Surveys
Despite their potential to capture a wide range of potentially relevant data on migrant health, health monitoring surveys represent only a small proportion of the reports produced to analyze migrant health in the European Region (figure 2). Adequately capturing migrants in health information surveys can be challenging if steps to proactively include them are not taken. For example, using a sampling frame construction from population registers may not include individuals living in shared accommodation, such as asylum seekers and refugees. Furthermore, participation rates among migrant groups may be low if survey and information materials have not been translated into multiple languages. Finally, oversampling of migrant groups may be required in order to generate sample sizes large enough for the disaggregated analysis of data with multiple confounders. Yet there is no overview of how many countries routinely integrate migrant indicators in their health monitoring surveys, nor how many can be considered “migration-sensitive” by fulfilling the criteria mentioned to systematically include migrants (sampling frame, recruitment, data collection in multiple languages, etc.).
Health monitoring surveys in Germany placed increasing emphasis on including and oversampling migrants to generate reliable data on migrant health throughout the 2010s, including the development of materials in multiple languages and personalized recruitment approaches to increase participation rates. Migrant status is captured using multiple indicators on citizenship, country of birth of parents, first language, length of residence in Germany, as well as residence status, enabling a distinction to be made between migrants with secured residence status and those with insecure status (temporary refugee protection, toleration, or asylum seeker status). The availability of a public-use file of the data to researchers and the variety of included health outcomes make it a valuable resource for scientists and policymakers to monitor migrants’ health status and their access to healthcare (Santos-Hövener et al., 2019; Schenk et al., 2006). On a European level, however, health monitoring surveys appear to remain an underused tool in migrant health research (figure 2).
Barriers in the Use of Information Systems for the Improvements of Migrant Health
Looking across the WHO European Region, HIS for migrants are deficient both in their overall availability and their integration into regular monitoring structures. Less than half of the 53 member states routinely report health data for refugees and migrants. Those that do are hampered in their ability to provide data of sufficient quality and comparability required for regular health monitoring. The reasons for this situation can be highlighted by five key barriers to improved information systems for migrant health: barriers in recording data, standardizing data collection, harmonizing migrant indicators, producing high-quality data, and sharing information. This article discusses each challenge in turn, paying particular attention to the situation of refugees, asylum seekers, and undocumented migrants in the European Region.
Barriers in Recording Migrant Health in HIS
In migrant-inclusive health systems, migrants would be granted unrestricted access to structures of routine care and civil registration, enabling the collection of all necessary health monitoring data. HIS for the general population, if designed in a migration-sensitive and multilingual way, would be able to collect data from all groups of migrants within these structures—at the point of care, from health insurance providers, at civil authorities and registries, or through household surveys. However, two key policy areas affect the representation of migrants in data collection systems for the general population.
First, the widespread policy of restricting access to healthcare excludes certain groups of migrants, in particular asylum seekers and undocumented migrants, from data collected at the point of care. Among the 28 countries of the EU, for example, only 17 countries grant the same health entitlements to asylum seekers as to the regular population (Abubakar et al., 2018). Even in these countries, however, a range of bureaucratic, linguistic, financial, and structural barriers may act to impede realized access to and utilization of essential health services. Policies which impede access to health service structures also ultimately affect the collection of health data for this group: if migrants are not able to access hospital care, for example, then data collection systems intended to capture patient data in this setting will systematically exclude migrants. This primarily affects their representation in medical records, utilization data, and disease-specific registries.
Second, the campification of migration, in particular for refugees and migrants, removes these groups from structures of everyday life and restricts their movement. These groups are thus often excluded from data collection at the household level or other areas of life, such as schools or work, affecting their representation in health monitoring surveys, censuses, and population-based records related to income and taxation. Parallel health monitoring structures are therefore required if national sampling strategies do not, as of 2020, capture shared accommodation facilities. In Germany, the RESPOND project has placed a particular focus on health monitoring among asylum seekers and refugees by using accommodation facilities as the sampling frame. With questionnaires translated into nine languages and a personal recruitment approach by a multilingual field team, the project was able to gain a high participation from this population group and collect a wide range of health indicators crucial for local service planning (Biddle et al., 2019).
These issues are amplified in the population of undocumented migrants, where lack of representation in data collected from authorities or civil registration and further barriers to services due to threats of deportation may lead to a near complete absence of this population from HIS. Of the 696 studies using HIS for migrant health research reviewed by the WHO HEN report, only five studies considered the situation of undocumented migrants. These studies were from Italy, the Netherlands, Israel, and Sweden, and all were based on single-center data from individual healthcare facilities (Coppola et al., 2017; Mor et al., 2018; van de Sande & van den Muijsenbergh, 2017; Wahlberg et al., 2014; Wendland et al., 2016).
Barriers in Standardizing Migrant-Specific Data Collection
The exclusion of specific subgroups of migrants from the HIS of the general population, either by exclusionary policies and legislation, or social and language barriers, has led to the establishment of several forms of diverse, haphazard, and often fragmented migrant-specific (“parallel”) data collection systems. These systems collect data on specific groups of migrants and are targeted toward reaching them in the settings where they live and/or access medical care. Although they are established outside the regular structure of a HIS, such systems can generate valuable information, provided they are set up in a way that allows for reliable analysis of migrant health data over space and time (i.e., the information generated is comparable between regions and different time periods). In the HEN report, less than 3% of the identified reports using routinely collected data were derived from migrant-specific data collection systems. These sources included administrative records, health monitoring surveys, and medical records. Administrative records from migration services, for example, have been used for migrant health research in Italy, using data from the Italian Service for Protection of Refugees and Asylum Seekers system to study vitamin D deficiency in newly arrived migrants (De Filippis et al., 2017).
Health monitoring surveys designed specifically for migrants from specific countries of origin can be found in Finland (Jokela et al., 2018) and Switzerland (Ackermann Rau et al., 2014). These have been used to study maternal health and health literacy, respectively. Other examples are national electronic medical record databases of medical services provided at reception centers for asylum seekers. In Denmark, the Danish Red Cross stores electronic medical records from health clinic at reception centers in a central database that has been used to study vaccination status and needs of asylum-seeking children (Nakken et al., 2018). The Netherlands follow a similar strategy: the health clinics at all reception centers use electronic medical records which are stored in one central database that can be used for comprehensive migrant health research (Goosen et al., 2014, 2015).
In other countries of the WHO European Region, for example, Italy, Spain, Greece, Turkey, or Germany, data derived from migrant-specific sources are based on a small number of facilities, and cover a limited geographic region and/or a heterogeneous or very specific range of health outcomes.
The examples of nationwide, migrant-specific medical record systems in Denmark and the Netherlands highlight the potential of these records to improve availability of migrant health data in HIS if they are tailored specifically to this setting and are readily available for analysis. However, the usefulness of migrant-specific records in many other countries remains hampered by haphazard data collection, the lack of standardization of electronic medical records, and limited comparability to migrants in other settings or to the general population (Bozorgmehr et al., 2019). All these factors lead to strong fragmentation and constitute a barrier to the integration of the information generated by such “parallel” systems for data collection.
Barriers for Harmonizing Migration Indicators
Integrating migrant groups in regional, national, or international HIS further requires the inclusion of indicators to allow for disaggregated analysis. Common indicators such as ethnicity or race are important for inequality monitoring, but are not sufficient for monitoring migrant health, as these do not necessarily capture migration history. Across the European Region, countries have different traditions of what constitutes a “migrant” and this is often reflected in their national HIS: several countries use country of birth, while others instead rely on citizenship status. The Netherlands and Germany use composite indicators categorizing individuals as “migrants” if they were born in the country, but one of their parents was not. Epidemiologists have argued that simply using one indicator of migrant status is not sufficient to understand the complex health needs of this heterogeneous group, and call for an inclusion of indicators on length of residence, first vs. second (or subsequent) generations of migrants and legal status (Riccardo et al., 2015; Schenk et al., 2006; Stronks et al., 2009).
The harmonization of migration indicators is also of crucial importance for the comparability over time and across regions. Monitoring improvements or deterioration of health over time is key for an understanding of the effects of policies and interventions on health status and health system accessibility. Furthermore, comparisons across regions or countries can help uncover unnecessary and unjust differences in health status or accessibility, and lobby for a change in conditions for the improvement of the health of refugees and migrants. However, neither of these comparisons can be reliably made if definitions of what constitutes a “migrant” differ.
Barriers in Producing High-Quality Data
Medical records and health utilization data in particular have been reported to be of low quality in terms of data completeness and accuracy (Bozorgmehr et al., 2019). This is an issue that affects both migrant and host populations. However, three particular issues negatively affect the availability and integration of migrant health data.
First, the coding of the migrant indicator itself has been reported to be of particularly poor quality (Mladovsky, 2009). This may be because questions relating to migration status, ethnicity, or legal status can be difficult to raise in a medical encounter, and considered inappropriate topics for discussion when the primary focus is on the provision of adequate medical care. Thus, doctors may either leave the question blank or guess the answer, leading to poor-quality data.
Second, medical records from facilities in refugee reception centers are a useful source of information to understand the medical needs of asylum seekers and refugees who are excluded from regular health service structures. As with other medical records, however, the records from these settings have been noted to suffer from issue of data quality and comparability in terms of the types of indicators collected (Rojek et al., 2018). In many cases, the data collection has been set up in an “ad hoc” fashion, with little consideration of the type of information requirements for rigorous data analysis and monitoring. In Germany, the PriCare project has begun establishing a research network with medical care providers at reception centers to improve quality of care and generate data on migrant health across facilities and regions. It is based on tailored electronic medical records which are implemented in 23 reception centers in three federal states. Through a collaborative development process, a decentralized data entry and analysis platform have been created which cater to the specific needs of healthcare providers in these settings. A central research team generates detailed, timely reports on health and health services in the participating reception centers (Nöst et al., 2019). This example shows that improvements in data quality are feasible even in fragile settings such as refugee camps, provided that rigorous epidemiological approaches are: (a) linked with tailored data collection strategies that avoid burdensome duplicate data collection for surveillance purposes, and (b) make processed data ready to use for local healthcare planning.
Finally, while asylum seekers and refugees may be excluded from data collection systems in routine medical settings, they are overincluded in others. The emphasis on infectious diseases and health security concerns with regard to newly arrived migrants has translated into surveillance systems for infectious diseases that place a particular focus on migrants. In many countries, entry screenings for infectious diseases have been implemented, for example for tuberculosis. Such routine screening practices may result in the overrepresentation of subgroups of migrants, such as asylum seekers and refugees, in national or regional notification systems for infectious diseases. Giorgi Rossi et al. (2017) performed a scoping review to study the factors influencing the accuracy of infectious disease reporting in migrants. They note a high completeness and accuracy of infectious disease data for migrants, and lower underreporting in migrants than in native populations. Data derived from notification systems in countries with migrant screening programs are likely to represent the “true” prevalence of infectious disease in migrants. However, the utility of such systems for comparisons of the burden of disease with the general population may be severely limited, as one part of the population (migrants) are systematically screened, while the remaining part of the population (natives or migrants not eligible for the screening program) are not. The data in these systems thus constitutes a mix of actively and passively found cases, resulting in the comparison of very different indicators when assessing differences in infectious disease prevalence or incidence between screened migrants and the host population. Another problem is that most notification systems only denote cases (i.e., the numerator), while the underlying population is taken from population registries. While the calculation of incidence rates is relatively simple for a stable general population, the lack of proper denominators in mobile, transient, and dynamic migrant groups, such as refugees or asylum seekers, may lead to overestimation of the “true” burden of disease obtained by notification systems. Bozorgmehr et al. (2018) illustrate this problem by showcasing how Germany screened more than 1 million asylum seekers since 2015 on mandatory basis, while it completely failed to capture the factual number of migrants screened, leading to inaccurate data on yield of screening for tuberculosis. Overall, the right to be counted has a lot of political implications, especially when this right is not or only improperly fulfilled (Correa-Velez & Gifford, 2007).
Barriers in Sharing Information
Partly to blame for the lack of integration of migrant health data in HIS is the absence of clear national and multilateral governance structures for HIS. Several studies have noted that countries could benefit from a cross-European network to harmonize indicators pertaining to migrant health and share best practices in data collection methods and infrastructure (Bozorgmehr et al., 2017; Dubois-Arber et al., 2010; Giorgi Rossi et al., 2017; Mladovsky et al., 2012; Rechel et al., 2012).
However, governance frameworks are needed not just for the sharing of experiences, but also for the sharing of the data itself. This is a topic of particular importance to refugee and migrant health, as the collection of data on migrant status at the point of care may have negative side effects. Caution is required to avoid stigmatization, fear of deportation, or otherwise discouraging individuals from seeking healthcare. The ability to link datasets could remove the need to collect sensitive information pertaining to migrant status at the point of care as these could be made available through linkage of systems or other routinely collected markers for monitoring purposes. The linkage of datasets can therefore serve not only to improve health monitoring for migrants, but also positively influence the provision of care itself by removing some of the barriers which impede access.
Furthermore, data linkage is crucial for the integration of migrant health data from numerous data sources and health settings. It allows for an analysis of data collected in parallel health provision structures together with data from routine settings and enables the analysis of multiple health outcomes. However, policies and legislature specifically addressing these issues are notably absent, creating uncertainty around who is able to link which datasets and for what purpose. Instituting governance frameworks around data-sharing must balance the need for adequate data accessibility for the purposes of health monitoring with the need for data protection, acknowledging that migrants may be particularly vulnerable to the effects of data misuse.
Opportunities for HIS and Migrant Health Research
Barriers in recording data, harmonizing indicators, producing high-quality data, and sharing information result in a highly fragmented health monitoring landscape for migrants. However, these barriers can also guide the identification of opportunities to strengthen HIS going forwards.
Above all else, there is potential to improve HIS through increased collaboration of actors throughout the European Region, to help identify potential strategies, build partnerships, harmonize indicators, and promote the sharing of best practices. In 2020, the indicators used to identify migrants in datasets are diverse and their suitability to assess relevant aspects of migration varies. A standardized set of indicators to capture aspects relevant to migrant health at the European level has already been suggested (Riccardo et al., 2015), but so far the institutional capacity to support its implementation across the region is missing. Increased collaboration at the European level could also foster the sharing of best practices regarding policies and legislature to promote data linkage and data protection measures.
Furthermore, there is substantial opportunity to increase the use of health monitoring surveys for monitoring a wide range of population-based indicators of health status and health system accessibility. Even when refugees and migrants are formally included in health monitoring surveys, proactive strategies are required to adequately reflect their health concerns. Strategies to include refugees and migrants in health monitoring surveys are community-based approaches to recruitment, identification of individuals in population-based registries, oversampling and tailored sampling approaches, and multilingual survey techniques (Biddle et al., 2019; Mladovsky, 2009; Reiss et al., 2014; Santos-Hövener et al., 2019). To include refugees and migrants even in situations of exclusion and campification, data collection for health monitoring surveys should extend into these specific accommodation settings.
In addition, efforts should be made to avoid the systematic exclusion of subgroups of migrants such as refugees, asylum seekers, and undocumented migrants in routine medical settings. Well into the 21st century, legal and structural barriers impede access to routine medical care and civil services in many reception countries for refugees and migrants. Legal barriers to care, threats of deportation, and stigmatization at the point of care should be reduced to facilitate access to healthcare and HIS. This issue is of particular importance for undocumented migrants, but equally extends to other individuals who may feel stigmatized or exposed through the recording of sensitive data in medical encounters and the possibility of this data being shared with, for example, immigration authorities. Avoiding the recording of migrant status and instead linking such data from other population-based records could thus have synergistic effects by also increasing health system accessibility. Overall, a whole-system approach to HIS is required, acknowledging that factors limiting health system accessibility for refugees and migrants will also impede the collection of comprehensive, high-quality data.
In the presence of barriers to routine medical care and civil registration, data collection systems which capture health information in specific medical settings, for example in refugee reception centers, should be established. Electronic medical records have been instituted in several reception settings for refugees and asylum seekers (Chiesa et al., 2019), but as of 2020 best practice guidelines for their implementation, use, and analysis do not exist. The use of migrant-specific medical records for migrant health could be strengthened through the implementation of standardized indicators and infrastructure, as well as the development of appropriate analysis protocols that allow for the timely generation of reliable health data. In particular, where parallel structures and HIS are established to collect data from specific groups of migrants, care should be taken to adhere to the same standards applied to HIS in the general population. Centralized databases or cloud-based systems containing sensitive medical data of asylum seekers and refugees, for example, should be critically examined for their usefulness compared to other options, such as a decentralized analysis approach which adheres to high standards of data protection (Nöst et al., 2019). The separation of migrants and asylum seekers from the general population should not justify or obscure violations of laws and rights pertaining to access to care, stigmatization, and protection of sensitive personal health data. Thus, strict data protection protocols should be followed to avoid issues such as data-sharing between medical facilities and immigrations services (Abubakar et al., 2018).
There is substantial potential to improve the availability and integration of HIS for migrant health across the European Region. While systems are fragmented, better integration can be achieved through increased multilateral collaboration for the harmonization of indicators, strengthening of governance frameworks for data-sharing and protection measures, and the increased use of underutilized data collection mechanisms, including health monitoring surveys and medical records from refugee reception facilities. These steps will remain essential for the adequate planning and provision of needs-based care for refugees and migrants. Strengthening HIS for migration-sensitive health monitoring is thus not simply a fringe issue in health systems research, but an essential aspect of ensuring the resilience of health systems in the face of increasingly diverse population groups.
We would like to thank Maren Hintermeier for her technical assistance in the creation of figure 1.
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