2 Review of maternity cards in the Nordic countries

The Norwegian Directorate of e-Health is focusing on the development of a digital maternity card. E-Health has conducted a review in 2022 on maternity data sharing in the Nordic countries. The review included Norway, Sweden, Denmark, Finland, Iceland, and in addition, Germany and the Netherlands. Germany and the Netherlands were included because they have defined the data elements used in the digital maternity card. In this context, data elements refer to the components of a data model.

This chapter addresses the general status of maternity cards in the Nordic countries, discusses the challenges, and reviews ideas for future development. It also presents the country-specific current implementation of the maternity card. Attachment B.4 provides the overall results in a quick glanceable format, and more detail is given below. The Nordic survey will serve as a background to the report, while the main focus will be to carry out a similar survey in the Baltic countries. More on that in Chapter 3.

Overall, the content of the maternity card has remained largely unchanged for several decades. While minor updates may have been made to include additional data fields, the core structure has remained the same. The transition from paper to digital maternity cards is ongoing but still in its early stages in many countries. This leads to healthcare professionals finding themselves making double entries in various systems when using a paper and a digital maternity card in tandem. In addition, not all essential data from the paper-based maternity cards are seamlessly integrated into the medical record systems, resulting in data fragmentation and redundancy. One of the current, most fundamental challenges we identified was defining and standardizing the data elements for digital maternity cards. The interview revealed that implementing the digital maternity card requires changes in legislation. The use of the paper-based maternity card may also lead to the prevalent practice of consistently printing new lines on the maternity card to record various aspects of a patient's journey, such as outpatient clinic visits. As a result, multiple versions of the same paper maternity card are in circulation, further complicating data management. Compounding the issue is the fact that municipalities usually have the autonomy to select and use the systems they deem fit for their needs. Consequently, a multitude of different systems are in use, each catering to their own unique requirements.

Regarding data fragmentation and redundancy, one possible solution that emerged was providing clear written guidance outlining the necessary data elements nationally. Healthcare operators in the private sector also have their own interests in system investments, which may influence interoperability and compatibility. When developing cross-border data exchange, it is worth noting the European Interoperability Framework (EIF)

European Interoperability Framework eif_brochure_final.pdf (europa.eu)

. It ensures legal, organizational, semantical, and technical aspects of interoperability. For example, concerning the legal environment, it was proposed that legislation should outline what can be stored in the national register. It is imperative that all the data requirements are enshrined in law before practical implementation can take place. Also, organizational interoperability takes into consideration the visualization of information. Currently, the data are presented differently in paper and digital form. The interoperability aspect should be considered through the visualization of data in a way that data exchange is compatible whether the exchange data are in paper or digital format.

All Nordic countries are collecting secondary data regarding maternity. When disparate systems do not seamlessly exchange data, midwives and other healthcare professionals must record the same information twice, leading to inefficiencies and potential errors. It also requires logging in to multiple systems, each housing fragments of the patient's data. This scattered approach to data management creates an undue workload and may impact the efficient delivery of maternal healthcare services. It appears that there is a need to streamline and integrate these systems to alleviate the burden on healthcare professionals, enhance the quality of care provided to expectant mothers, and enable the cross-border exchange of maternity data in the future.

This section describes in more detail the situation in each Nordic country according to the information received from e-Health. Based on the interview, we can describe the current format of the maternity card, the sharing of information between health professionals, and the situation regarding the national contact point. It is also important to note that our information is not absolute, so in reality, country-specific situations may differ from how this report presents them. This should therefore be taken as an indicative overview.

Currently, in Norway, maternity care is operated using paper-based maternity cards. Norway has an expert organization, e-Helse, that sets the premises, guidelines, and standards for the maternity card so that the solution can be developed by others. There is an aspiration for digitizing the maternity card, but the implementation has not yet been decided on the national level. Early studies and preparations have been made to identify the data elements to be included in the maternity card.

In Norway, data transfer between healthcare professionals is implemented using a nationally centralized database. The information included in this type of maternity card follows the national standard to some degree, although different healthcare organizations on the national level may also have their own guidelines regarding the data collected on maternity cards. Norway’s centralized database is already in use for cross-border data exchange of medicines and prescription data. Overall, Norway strictly uses international standards for healthcare data, as it wants to be EU-compatible. 

In Sweden, maternity monitoring is done through local municipal digital services. There are national recommendations on how to monitor pregnancy, but ultimately it is up to the municipalities to decide how to handle the monitoring. The maternity cards have essentially the same data content, but the information is stored on different systems. This means there is no centralized information system at the national level where pregnancy data can be viewed by the healthcare professional or the mother, and no standardized format for presenting the information. Therefore, information sharing between healthcare actors is poor. For example, if a mother in northern Sweden is treated in southern Sweden, she may not have access to information about the pregnancy. Sweden also lacks a paper record, but municipalities have their own websites for pregnancy monitoring that provide centralized information that can be monitored by the pregnant mother.

In Finland, digital and paper-based maternity cards are used in parallel. THL (Finnish Institute for Health and Welfare) defined the data elements used in the maternity card in 2016. This includes the minimum data that must be on the maternity card and the minimum requirement for treatment at all stages of pregnancy. However, the digital maternity card was not implemented nationally in 2016 because it was not prioritized for government resources. Finland also has an IT system called Ipana, which covers a third of all births in Finland and where healthcare professionals and mothers can log in and see information related to maternity

Ipana Suosittu esitietopalvelu uudistui | Ipana äitiys

. The appearance and content of the platform are similar for mothers and health professionals. In Ipana, there are also multiple information packages related to maternity, which are in line with THL’s guidance. Ipana's popularity is due to the involvement of professionals in its development. Ipana itself is connected to Kanta through the main patient information system, but not directly.

Because the pregnancy information must be collected somewhere, the benefits of the paper card are mainly for those without ID and those who do not speak any of the languages spoken in Finland. (The Kanta system requires a Finnish personal identification number and strong identification.) There are also mothers who do not give consent to the transfer of data based on the GDPR and some who do not want to use e-services in general. Under the GDPR, mothers can also opt out of digital maternity recording in the middle of the pregnancy and continue only with a paper card, in which case the pre-collected data is anonymized but retained. On the other hand, sometimes mothers may want a paper card because they don't want their data to be seen by a familiar healthcare professional (in small villages, for example).

Denmark uses paper-based maternity cards and has a national standard for pregnancy monitoring. They also have a country-specific centralized information system that brings together data from different regions. The digital maternity card has been tested as a project in one hospital and its surrounding municipalities. The system worked in such a way that the mother herself could log in and check her own data, and the hospital/neighbouring municipalities used the same system. However, the digital maternity card caused some duplicate entries and additional work (e.g. logging in to several systems), which left healthcare professionals unsatisfied. Professionals in Denmark highlighted the need for an all-in system, so that there is no situation where some of the data comes on paper and the rest within the system. However, mothers were pleased with the experiment, as they could follow their pregnancy in digital form.

Iceland is the only Nordic country to fully implement the digital maternity card. They have an integrated electronic health record system where both the pregnant woman and the healthcare professional see mostly the same information in the digital maternity card. The exception is a dedicated feature where the midwife can enter extra-sensitive information in the system, such as when there is suspected or confirmed domestic violence that is not shared in the patient portal. Information sharing between healthcare professionals is in a good state. For example, if a pregnant mother gets into an accident, the healthcare professional who comes to provide help sees a notification in the shared electronic health record about the pregnancy and will be able to access all relevant information needed about the pregnancy due to nationally interconnected electronic health records. Moreover, the real-time data flow is to the National Birth Registry for secondary data usage on the national level. Iceland’s interconnected health information system could serve as a point of contact for a possible cross-border data exchange in the future.

Germany and the Netherlands are included in this report because they have already defined the data elements of the digital maternity card and, at least in the case of the Netherlands, have tested it in practice.

In Germany, they use a paper maternity card and have predefined all its data elements. The data elements are reasonably consistent with Norway, and developers can access the data elements online. In addition to the paper maternity card, there exists a first draft of the digital version, which has not yet been adopted by anyone. There is a strong desire to digitalize the maternity card, but for the time being, the paper card is still in use. The situation in the Netherlands is very similar to that in Germany, i.e. the data elements have been defined and are available for use by developers. A special characteristic of the Netherlands is that the mother and fetus are considered to be separate individuals, which may make it difficult to transfer maternity data between countries in the future.

In summary, pregnancy monitoring and the flow of information between healthcare professionals in the Nordic countries are generally in a good state. The Nordic countries also often have a national contact point that could possibly be used for information exchange in the future. In addition, no clear barriers to further development of the digital maternity card were identified. Iceland seems to be the most advanced of the Nordic countries in the digitalization of the maternity card, while Sweden seems to have the most room for development when it comes to enabling the digital maternity card in the future. A summary table for comparison can be found in attachment B.4.

We will now go through the development ideas for the digital maternity card identified through the interview. Regarding the defining of data elements, comprehensive documentation and guidance on how to structure all text fields and employ the appropriate code language was seen as essential. This step could ensure uniformity and consistency in the data recorded, facilitating seamless integration and analysis. In addition, one fundamental principle that emerged was the idea that maternity card projects should be designed to be cross-border by default. This would better ensure that the digital maternity card can function effectively across different regions and also across borders, enabling expectant mothers and healthcare professionals to access comprehensive and coherent healthcare information seamlessly. The existence of a central system for health data at the national level is important, as it serves as an enabler for cross-border data exchange. Central system for health data refers to a system into which healthcare information flows from other, possibly locally used, information systems. The national contact point could later serve as a platform for international maternity data transfer.

Another possible consideration is the need for a universal version of the paper maternity card. By modifying the paper versions used in different countries, universal data elements could make it easier to reconcile the data elements of internationally operating healthcare systems. In addition, it is worth noting that all countries developing their electronic maternity cards are using their own language or other official languages of the country. When developing a cross-border data exchange, it could be feasible to use commonly understood language to enhance interoperability.