In 2015, the European Union (EU) received the largest number of forcibly displaced migrants since World War II: over 1.2 million asylum seekers were registered [1
]. Forced migration can represent a challenge to transit and destination countries’ health systems in terms of rapid humanitarian responses as well as provision of high-quality care in line with concepts of universal health coverage [2
]. Meeting these challenges requires strong health information systems (HIS) which include migrant-sensitive data to produce valid and timely information on health status and health care needs. Data on the short- and long-term health situation during the asylum process—that can take many years—is essential especially for policy makers, health planners and public health professionals at national, regional and local levels. HIS data need to be appropriately disaggregated [3
] so that systematic disparities in health (or its determinants) between social groups [6
] can be detected and the impact of policies on health equity and access to care be measured. However, such data is scarce [7
] and asylum seekers stuck in their asylum process do not appear or cannot be recognised as such in any health register for years.
To improve HIS it is important to monitor their performance and have benchmarks against which countries can identify their relative strengths and weaknesses. The WHO recommends the HIS performance index (HIS-PIX) for the assessment of country HIS. This tool assesses country capacity to collect relevant data at appropriate intervals, periodicity, timeliness, contents of data collection tools and availability of data on key indicators, as well as country capacities for synthesis, analysis and validation of data [9
]. HIS-PIX is, however, focussed on low- and middle-income countries, and is applicable to national systems and populations rather than to inequalities within populations.
We hence aimed to: (a) develop an instrument that can be used to compare and benchmark the country HIS with respect to the ability to assess the health status and health care situation of asylum seekers; and (b) pilot this instrument by applying it to The Netherlands and Germany.
HIATUS is a tool that helps countries to assess their HIS with respect to the ability to assess the health status and health care access situation of asylum seekers. It allows for cross-country comparison and benchmarking of HIS performance in this area. We developed the tool as a generic tool to assess the HIS of any country with a well-developed health system. While there is considerable heterogeneity in country HIS, a comparative assessment can help countries to assess their relative strengths and weaknesses, and to identify “benchmark” countries that illustrate how the HIS of one’s own country could perform better. As part of a piloting, we applied the tool to country HIS in DE and NL and compared the performance of the two countries.
The tool proved to be best applicable in a team of at least two persons, in which ratings are performed based on consensus. There are two main reasons for that. Firstly, scoring with HIATUS is based on subjective considerations, which can be expressed, discussed and weighted in teams. Our experience is that team-based scoring is thus important to arrive at reasoned, consensus-based scoring. This also illustrates that the HIATUS instrument will need to be more explicit on the criteria to be applied in future versions. Secondly, the tool covers a wide range of topics in different areas of country HIS, and no single expert will realistically be knowledgeable about all aspects. Moreover, in federal countries such as Germany there may be differences between individual states. Combining the expertise of different public health professionals proved to yield a meaningful and insightful picture of the respective HIS performance. Based on our practical experience of using the tool, a higher number of raters per country may be helpful provided that they are equipped with complementary expertise in HIS, health data collection and refugee issues.
The assessment and cross-country comparison revealed several strengths and weaknesses in the HIS of respective countries. Germany hosts the largest numbers of asylum seekers in the EU. With a capacity of less than 20% of the maximum possible total HIATUS score, there is considerable space for strengthening and improving the HIS in Germany in this area. In contrast, the HIS in the Netherlands performed better, as measured by the HIATUS score, especially with respect to the availability of data across data sources. This is also reflected in the existence of a wide range of epidemiological studies that contributed to the evidence base on health among asylum seekers and that were used to influence health policies (e.g., relocations of children of asylum seekers [12
], free provision of contraceptives [13
]) and in targeted health promotion activities (e.g., increased drowning risk, high prevalence of diabetes) [14
]. The explanation for the huge difference between the two countries is mainly explained by the fact that The Netherlands has established a system of health care registries and notification systems, and was able to include the group of asylum seekers into these data sources. In contrast, existing data sources in Germany are yet less developed and those who exist are often unable to stratify by migrant group or asylum seeker status.
A full HIATUS score reflects a situation in which a HIS is perfectly able to provide data on respective indicators and stratify in existing data sources according to asylum seeker status. It may reasonably be argued that a full score is unlikely to be achieved even for countries with a highly developed health system and a strong HIS. However, we think that the added value of the tool is to depict the gap between the real capacity of country HIS and an “ideal” situation. There may be good reasons to strive for sub-optimal HIS rather than a perfect HIS (e.g., trade-offs between investments in HIS and other blocks of the health system). The value of HIATUS, and its international application, would be to provide the data to inform such a choice.
The HIATUS may also be used for assessing the HIS regarding the host or national population. Overall HIS performance would serve as another benchmark, and help to assess how much improving the refugee HIS would depend on making particular efforts for the refugee populations versus addressing fundamental HIS limitations for the country at large. Further research should therefore assess how the approach taken in HIATUS can be applied to measure general HIS performance or specific performance for other population groups.
Strengthening a HIS requires intellectual, political and financial investments. Investments directed to HIS performance also contribute to strengthening of the overall health system, as other blocks of a health system (service provision, financing, health workforce, and governance) rely on the availability of valid, reliable and timely data. Good access to comprehensive health care can also facilitate data availability, especially from medical records sources. However, when access to health care is not given or only limited in scope, targeted studies and signals from health professionals and others working with asylum seekers become more important to capture potential gaps between health needs and access, e.g., for vulnerable sub-groups among asylum seekers, pointing to areas where the right to health is not fulfilled [3
With HIATUS, we provide a tool for countries to assess their own HIS in an area of international importance related to asylum seekers health and health care. HIATUS proved to have a moderate to low reliability in individual rating, so that a consensus-based rating is the recommended approach to assess country HIS when using the tool. Further studies are needed to assess test-retest reliability of the team based rating, or inter-rater reliability of ratings for the same country between different teams. Further requirements of a valid assessment tool, such as sensitivity to change, still need to be explored in future studies using HIATUS. As country HIS are subject to constant or dynamic changes, a country’s HIS should be assessed using HIATUS at least every 5 years, but also after major changes to the HIS have been implemented.
Further refinements may be applied to the weighting of items to better reflect their relative importance. The applied weights were in fact chosen arbitrarily in a manner that reflected the views of the authors. However, weightings could be applied to items e.g. based on prevalence estimates of predominant conditions, size of special population groups in respective countries (e.g., minors), or particularities of the asylum process. Such weights could also be derived more systematically based on methods to capture the views of experts in the field of health and health care among asylum seekers. If the need arises in a country where HIATUS is used, further dimensions and indicators could be added or amended. Further relevant indicators might refer to substance dependence, population coverage of services, and unmet health care needs or barriers to obtaining care.
A European Union-wide upscale of the performed cross-country comparison would form an ideal opportunity to further test and refine the tool in future studies. This would support objective evaluation of country HIS, enable countries to take measures directed to HIS strengthening, and facilitate international exchange about challenges, strategies, and solutions to monitor the health of asylum seekers across the EU.