Enhanced cross-border data sharing in Nordic maternity care
Having your data nationally isolated behind digital borders can become a serious problem especially when in comes to health issues. Finnish residents Iliana Kandzha and Sofia Jernroth share their stories.
Every year, around 25,000 people move from one Nordic country to another for work, study or other reasons.
While migration flows testify to the integration of the Nordic Region, people in the digital age assume and expect their digital information to follow them across invisible borders. Alas, this is not always the case.
While this lack of cross-border connectivity is usually nothing more than a nuisance that the individual involved can solve, in urgent and sensitive cases such as health issues, it can cause serious problems if your data is stored in an isolated national system.
"The Little Paper Booklet"
In autumn 2023, Finnish resident Iliana Kandzha was in the sixth week of her pregnancy when she and her busband were both offered jobs in Denmark and had to relocate.
"At the neuvola [ie. the Finnish maternity and child health system] they were really sweet and caring. I was given a little paper booklet that the nurse made notes in, by hand, after every visit. But by the next crucial check-up in Week 20, we had arrived in Copenhagen," she recalls.
While a pregnancy is usually considered viable by week six, the foetus is scanned for abnormalities during the check-up in week twenty, which is also the legal limit for voluntary abortion in Finland. Once she had arrived in Denmark, registered and had her CPR number, Iliana called her GP to arrange a referral for the scan. The problem was that an appointment could not be arranged until well after Week 20. Iliana had to visit another hospital on an unrelated matter before that.
The hospital staff due to scan me were very worried but had to wait for my data to be registered by the GP, who was unable to see me before Week 20. With a digital maternity card, the data would have gone to the hospital directly, avoiding this potentially dangerous delay.
In spite of the delay and confusion, Iliana and Frederik were lucky that nothing was wrong with their baby, and everything went well in the end. In other cases, it could have caused further problems, even though the two countries seem to operate with the same digital systems.
"No one in Denmark asked to see the little booklet I brought with me from Finland with all my information in it. A Danish nurse told me later on that Finland and Denmark actually use the same digital healthcare system, they just don't seem to be connected in any way," Iliana concludes.
”I Wouldn't Want to Be in Your Situation, Sofia”
Another story that testifies to this complicated cross-border bureaucracy, is that of Finnish Sofia Jernroth, and how she found herself pregnant while working remotely from Norway for a few months — and in a sudden bind.
She was still registered as a resident in Finland, but once pregnant wanted to do everything by the book.
It turned out there wasn’t much of a book to go by. Sofia called official agencies in Finland and Norway but was always told to try somewhere else.
It was a classic Catch 22. On the one hand, becoming an official resident in Norway would mean the loss of her social security status in Finland. On the other, registering in Norway while already pregnant, would exclude her from Norwegian maternity and parental benefits because her employer was not Norwegian.
At a meeting with KELA [ie. Finnish Social Insurance Agency] an official told me bluntly, "I wouldn't want to be in your situation, Sofia."
Although she was living in Norway, Sofia couldn’t officially register there. Nor could she stay registered in Finland and live in Norway for more than six months without losing all welfare support. Officials recommended that she keep her registration in Finland.
"I was very careful to keep a digital traces of everything, and I am glad I did," she says.
Eventually Sofia decided to stay and give birth in Norway, but during the first months of her pregnancy, she made frequent visits to Finland for parallel appointments, so that the baby and the pregnancy would create a paper trail in the Finnish system, too.
In Norway, she was given unofficial access to what she and the baby needed, and individual doctors and counselors registered them in the system manually, which helped a lot after their daughter was born.
The cross-border confusion only escalated during the first year of ther baby’s life. The parents went to the Finnish embassy to register their child but miscommunication between Finnish and Norwegian officialdom delayed financial support for the young family for the best part of a year. Conflicting advice from different officials, often at the same agency, was a continuous source of frustration.
In the end it worked out for us, but it should not be that difficult to be pregnant and have one foot in two different countries, especially within the Nordic Region. No agency knows how to go about it, and you have to drive the process yourself. We could easily have lost all our maternity and parental benefits, if I had just moved to Norway straight away and not kept a digital trail in the Finnish system. All of this confusion could have been avoided if agencies were able to communicate more easily across borders, for instance through a shared digital maternity card system.
New Nordic Efforts
Iliana’s and Sofia’s stories are just two of many that keep piling up and have encouraged the Nordic Council of Ministers to embark on a long-term, strategic journey by financing several projects that promote solutions for better cross-border data communication and interoperability between national and local digital platforms and services.
One of the projects focuses on internationally accessible Digital Maternity Cards (DMCs). The DMC project might be called a typically Nordic initiative. It promotes gender equality by aiming to remove an inconvenience particular to women. DMCs are also a clearly defined and delimited service, the study of which will help highlight general obstacles to both national and cross-border data flows.
Detailed findings in a new report
A status report on Nordic and Baltic DMCs aims to share knowledge on the stage of development and the content of them.
There are stark differences in how far digitalisation and data sharing has evolved in the Nordic and Baltic countries. The idea of transitioning from hard-copy maternity cards to digital services, as well as being able to share the data across borders, enjoys generally strong support among both users (i.e. mothers) and providers (healthcare professionals). However, it seems that development and implementation are lagging behind.
Breakdown country by country
The Nordic countries
Showing the way, Iceland has fully integrated the DMC into both their national birth registry and healthcare platform, where both patients and providers can access extensive and (almost) identical information. When developing future cross-border services, Iceland’s interconnected systems could serve as best-pratice examples.
Norway still has paper-based maternity cards but also uses a national digital database for information sharing between service providers. Some early steps have been taken towards a centralised database for cross-border exchange of prescription data, adhering to international standards (i.e. EU compatibility).
In Sweden, maternity care is fully decentralised and municipalities are responsible for digital pregnancy monitoring. No national system or standardised data format exists, resulting in poor interoperability even within the country.
As part of a transitional period, Finland has been using hard-copy cards and DMCs in parallel since 2016. The digital maternity database 'Ipana' covers roughly a third of all births, but has no interoperabilitiy with the general healthcare platform. The lack of a universal digital ID and the number of Finns who opt out of online registration because of GDPR concerns hamper progress.
Denmark, while boasting a well-run centralised digital healthcare system that brings together data from different regions, still relies on hard-copy maternity cards. A small scale DMC pilot received positive feedback. However, local experts recommend avoiding a gradual roll-out, which would lead to parallel analogue and digital systems, and caasll instead for a unified all-in digital approach.
The Baltic states:
Estonia has a centralised health information system and uses both hard copies and DMCs. The tools for cross-border data exchanges are in place but have not yet been implemented.
In Latvia the National Health Service oversees policy and funding while actual care is mainly by individual providers. Pregnancy data is stored in hard-copy maternity cards and 'maternal passports'. Much like the situation in Sweden, Latvian data is fragmented and there is no national contact point, centralised interoperability or infrastructure for sharing pregnancy data across borders.
Lithuania, on the other hand, has a centralised eHealth system, is in the priocess of integrating data from hospitals and has had DMCs since 2015, with system upgrades in 2024. It also has the infrastructure for cross-border data exchanges, the development of which is ongoing.
Possible Solutions
A key challenge for digital maternity care and cross-border data exchange, is the lack of standardised data elements, resulting in fragmented information, redundant records, and sometimes dupication. The use by ocal providers in some countries of their own systems leads to a wide variety of platforms that make coordination difficult, even at national level.
It seems the majority of Nordic citizens would be willing to share their health data, particularly for clinical care and research, and that the technology to facilitate cross-border interoperability already exists in some places. However, actual implementation and momentum for the project remains limited.
In line with the 'Handbook of Cross-border Data Exchange' potential first steps could be defining data standards at national level, improving integration between systems, and remembering to commission platforms that are designed with cross-border compatibility in mind.
