3 Review of maternity cards in the Baltic countries

KPMG Finland arranged interviews with healthcare representatives from each Baltic country – Estonia, Latvia, and Lithuania – to find out the status of pregnancy care and maternity cards in these countries. The focus of the interviews was specifically on the overall responsibility of pregnancy care, the pregnancy data collection and recording procedures, the extent of digitalization of the maternity cards, and the kind of standards in place regarding pregnancy care. In addition, some challenges to cross-border pregnancy data exchange were discussed. The results from the interviews are presented in the following chapters. For more information on the dates of the interviews and the people involved, see attachment B.1. A summary of the status of pregnancy care in the participating countries is provided in table format in attachment B.4. The specific contents included in maternity cards used in the Baltic countries are provided as attachment B.5.

The Health and Wellbeing Information System Center (‘TEHIK’) is the authority that manages all health data procedures and development in Estonia. TEHIK is also responsible for managing the central health information system for pregnancy data collection. TEHIK manages the development of health data in accordance with the requirements and guidelines issued by the Ministry of Social Affairs. In addition, TEHIK is responsible for informing all the healthcare providers in the country about these laws and demands set by the Ministry.

At the moment, the overall responsibility of pregnancy care is on the local healthcare providers. The healthcare provider that first confirms the pregnancy usually starts the pregnancy care process and takes responsibility for the whole process until birth. A normal pregnancy can be supervised by a family doctor and nurse or most often by a midwife in a maternity hospital. Other healthcare providers, such as an obstetrician, get involved in the process if complications occur. Regular monitoring and tracking of a pregnancy consist of three to five meetings during the pregnancy. However, Estonia is currently rebuilding their entire health information system, which is why the organization of pregnancy care is likely to change in the country in the following years.

For the collection and recording of pregnancy data, there are national guidelines in place that guide the actions of local healthcare providers in the country. The pregnancy monitoring guidelines were written about 15 years ago. In addition, Estonian law requires that every healthcare service must be documented. There are specific rules on what kind of data healthcare providers should record at the reception and that the data should be recorded digitally in the systems. However, since the rules were defined before digital documentation, today’s actual clinical practice may not always be in line with the rules of pregnancy data collection. Thus, there can be variations in the data collection and recording practices between establishments, as some healthcare providers might still record some of the data manually and in their own way. Note that Estonia has recently hired a person to take on the challenge of digitalizing pregnancy and birth data. The first results of this are expected by the end of 2024.

In summary, the data is stored in the establishment’s own local information system, on paper cards held locally, and, to some extent, in the central information system. This means that the data gathered during pregnancy is fragmented in the country, as it may exist only in specific local information systems or establishments or on paper. The most important pregnancy data, like birth information, patient summaries, and medical prescriptions, are recorded in the central information system. Usually, at least some kind of summary ends up digitalized also in local information systems, but this information is not structured or machine-readable. During birth, some data gets documented on paper, and some establishments have a fillable form that is digitalized and stored in the local information system.

Even though the pregnancy data collection and recording process varies between healthcare providers, the overall process is digital, as many of the local healthcare providers record pregnancy data in digital format in the local information systems. Shared data is sent to the central health information system via X-road. X-road connects all central databases and medical establishments in Estonia. Data that are made available on the central information system is available to all parties, including the patient, unless the patient has prohibited access to their patient portal. Data are of varying quality, even though there are some standards in place. Data is mostly document-based and not structured or machine-readable. According to the interview, audits say that important information about the birth process and pregnancy is missing.

In Estonia, some hospitals have digitized the pregnancy care process to a fairly large extent, while others do it more manually. Both the paper and digital versions of the maternity card are in place. For the pregnant woman, the paper version of the maternity card is the main source of information; it includes detailed data on her pregnancy. Pregnant women can also access their pregnancy data via the patient portal of the central information system, where the data is more general.

There are some variations in the presentation of data structures and data contents between the paper and digital versions of the maternity cards. Even though TEHIK and the Ministry of Social Affairs give guidelines on what kind of data to collect in the pregnancy care process, there are no uniform data definitions for the data in question. Thus, local solutions for data collection and recording can emerge, as local operators emphasize some pregnancy data that others do not. It was noted in the interview that the data elements of the maternity cards may change during the digitalization process, but they will still be in line with WHO standards.

Regarding the use of standards on pregnancy care, there are several international standards in use in Estonia. For example, ICD-10 and HL7 CDA. Some hospitals have a few SNOMED CT elements. Estonia is moving towards utilizing HL7 FHIR and SNOMED CT more widely in the future. In addition to these, the European Patient Summary is in use in pregnancy care. The systems are based on Nictiz systems, but there is no direct cooperation between the authorities at Nictiz and Estonia. WHO guidelines are also in use regarding pregnancy care, and the contents of the maternity cards are largely based on these standards. The standards mentioned in these chapters are presented in more detail in attachment B2 of the report.

Currently, there is no interoperability for cross-border pregnancy data exchange in Estonia, even though the national contact point or centralized information system is in place. The transmission of data across borders is still in its infancy, and mainly medical prescriptions and patient summaries can be sent across borders. However, the tools for cross-border data transfers are available. In addition, there is a clear will in Estonia to increase data exchange in this area in the coming years.

According to the interview, time and organizational issues are seen as the main challenges in enabling data exchange across borders. The pregnancy data first needs to be in a structured format at all establishments. Also, the data must be transferred from local establishments to the central health information system before there can be data transfers across borders.

There is national-level regulation in place regarding pregnancy care in Latvia. The National Health Service (NHS) works in close cooperation with healthcare providers regarding pregnancy care, and every healthcare provider uses the same information related to pregnancy care. The NHS is a direct administrative institution under the Latvian Ministry of Health. The responsibilities of NHS include implementing state policies for planning and the availability of healthcare services for pregnant women as well as implementing the eHealth program according to the policy decided by the state. In addition, the NHS is producing some statistics related to pregnancy care, which is paid for by the government.

Pregnancy care and monitoring are carried out by specialists who have a contract with the NHS. Thus, the overall responsibility and practical implementation of the whole pregnancy care process is on healthcare providers like gynaecologists, family doctors or practitioners, or midwives. Pregnancy monitoring, including consultations with a physician and midwife, laboratory, and diagnostic investigations during certain weeks of the pregnancy, are funded from the state budget.

The collection and recording practices of pregnancy data are mainly manual in Latvia. There is a central health information system that collects data about the performed examinations and visits, but not about the results of the examinations and the progress of the pregnancy. Hospitals have their own digital platforms and databases, which are not connected to other hospitals. Due to this, pregnancy data is very location-based and fragmented. Even though the data collection and recording process is mainly manual, there is an eHealth platform in place, where some parts of the pregnancy data can be recorded in digital format. For example, ultrasound is included in this platform. However, its use is not mandatory for healthcare providers. There are also some kind of fee-based private data portals or platforms available to hospitals and clinics. The data portals can be used mainly for sharing specific laboratory tests nationally, and this way, the data about laboratory results can also be made available to other hospitals and clinics. For example, the results of blood tests, urine tests, and infection tests can be stored in private portals. In addition, some specific examinations made during the pregnancy period can be stored there. The use of these private platforms is not mandatory either.

As pregnancy-related data is not necessarily shared in the eHealth platform or private data portals, there is potential for making duplicate tests when pregnant women visit different healthcare providers. However, healthcare professionals are responsible for pregnancy care and they keep documents on important things like medical prescriptions and patient summaries regarding the pregnancy. Some hospitals and clinics with large databases might share data with the Centre for Disease Prevention and Control (ECDC) from their own databases. It was noted in the interview that there is no data available on pregnant women who only use the private sector for pregnancy care. In addition, pregnant women who are not Latvian citizens, non-citizens, foreigners with a permanent residence permit in Latvia, stateless persons who have been granted stateless status in Latvia, refugees or persons who have been granted alternative status, and asylum seekers must use only the private sector for pregnancy care, so no information is recorded even if they have a maternity passport.

There are two types of cards used for pregnancy data in Latvia, which are both paper versions. Pregnancy data is recorded on the maternity card by the healthcare professionals as well as on a maternal passport held by a pregnant woman. Healthcare professionals use the maternity card for tracking the progress of the pregnancy; it is the main tool for data exchange between healthcare providers. The card is usually in the possession of the responsible healthcare provider. The pregnant woman has her own maternal passport, which contains data about her pregnancy in detail. The maternity card and maternal passport are regulated in the same way, so the documents are similar in their form and data contents. During the delivery or birth in the hospital, a third card is created regarding the delivery. This card includes descriptions of the phases in the hospital during and after the birth. Patients will also get a version of this card at their home after the delivery, where the data contents of the card are provided very shortly and on a high level.

According to the interview, the transition towards digital maternity cards in Latvia is difficult because each hospital uses its own platforms, databases, and information systems for pregnancy data collection and recording. Thus, the IT systems are very different between healthcare providers, and they are not easily connected to the possible national centralized information system. It was noted during the interview that if a digital version of the maternity card is published in the future, it will probably resemble the paper version in terms of data content and data structures.

In Latvia, they have standardized national-level regulations that set out procedures and guidelines for the minimum standard of care. Although they are not directly based on any international document, they are based on internationally recognized guidelines. The data collection and storing process is done according to the GDPR. Also, several tests like blood tests must be performed according to certain codes. It was noted in the interview that Latvia is planning to start using the NOMESCO codes regarding pregnancy care next year. These standardized code sets are used for classifying medical procedures, diagnoses, and interventions, which are utilized primarily in the Nordic countries.

According to the interviews, the most difficult challenges in cross-border data exchange are organizational and technical in nature, as well as resource constraints. Due to these aspects, the digitalization of the pregnancy care process is very slow. For example, there is a need for a national contact point for cross-border data exchange in Latvia. To make this possible, data transfers from local hospitals need to be organized in such a way that at least the most important data on pregnancy care are transferred to a central health information system. As every hospital is using its own digital platforms and IT systems, there is a need for integrators.

There is national regulation in place regarding pregnancy care in Lithuania. The Ministry of Health makes legal acts regarding procedures and policies of pregnancy care services in the country. Pregnancy care is organized on three levels –primary, secondary, and tertiary. Primary-level services include pregnancy care services, where for example family doctors and gynaecologists are involved in the process. Secondary-level or tertiary-level services are provided for pregnant women when there are high-risk factors related to the pregnancy. In these cases, obstetrician-gynaecologists and other specialists are involved in the process. There is also a special protocol for special cases in which the family doctor can ask for support from specialized doctors. However, hospitals have the overall responsibility of pregnancy care in the country. Family doctors or gynaecologists support the hospitals in taking responsibility for pregnancy care and providing services for pregnant women. Also, some special institutions collect data related to pregnancy care and births and provide statistics and analysis of the status of pregnancy care in the country.

In Lithuania, there is a national eHealth information system that stores the medical records of each resident (patient) and also allows integrating data from all internal information systems of the healthcare institution into a unified system. Such integration allows for the creation, storage, and transfer of EHRs. This system stores different types of records, for example, prescriptions and outpatient visits of the pregnant woman. Specialists, like family doctors, can use national portals and eHealth records in which data about pregnancy is collected. By accessing these national portals, specialists do not necessarily have to have access to internal data. Although most hospital information systems are linked to the national eHealth information system, some data can only be found at certain hospitals, making pregnancy information unavailable to all parties in all situations. However, family doctors should always have access to inpatient/outpatient visits, referrals, prescriptions, vaccinations, and birth/death certificates. In case the family doctors need to have access to pregnancy period-related data, they can also receive electronic reports that include data about the progress of a pregnancy.

In terms of collecting and recording pregnancy data, there are national guidelines in place that guide what data related to pregnancy, maternity, and childbirth should be collected in the records. Thus, certain hospitals may have different data collection and recording structures, and the data held in these hospitals may be more extensive than in the centralized national information system. Pregnancy care-related data is collected as pregnant women visit hospitals or other healthcare providers, and most data is recorded digitally in local hospitals’ information systems. The data collected during the visit include special types of data that describe the pregnancy case and data about who filed the forms during the period. References to status reports are also included in the systems.

It was noted during the interview that the centralized national information system is big and well-structured. In addition, the availability of pregnancy data should be ensured, as the patient has the right to ask for their records about the pregnancy at any time, and hospitals should be able to deliver the records to patients. There can sometimes be technical issues that prevent this.

The maternity card used in Lithuania has been digitalized since 2015. In 2015, several healthcare service providers started to use the system to share maternity card data. Data sharing was created for healthcare specialists; patient access to this maternity card information was not developed. The starting point for developing a digital maternity card was paper-based maternity cards, which are still in place. The paper-based maternity cards include data about the visits of a patient during the pregnancy period.

Today, Lithuania has a national eHealth system where different types of eHealth records are stored, such as inpatient/outpatient visits, referrals, prescriptions, vaccinations, and birth/death certificates. All healthcare providers are connected to this system and use it to record and share patient eHealth records. Between 2023 and 2024, a project is underway to integrate the current national maternity card system. This will allow patients and health professionals to access maternity card data.

Currently, the maternity card is the main source of information for the pregnant woman. The card has been described by pregnancy care specialists. The maternity card includes a pregnancy care plan, contact information, high-risk pregnancy factors, urine and blood tests, medical history (like infections), vaccinations, domestic violence, work-life data, data in the outpatient clinic during pregnancy, and ultrasounds. Each visit is presented in different sections on the maternity card. The data contents of the original paper card and the digital version of the maternity card are largely the same.

There are national-level eHealth record data sets in place for collecting data on the pregnancy period, birth, and childcare. International standards are also in use, for example, SNOMED CT, ICD-10, HL7 FHIR, and ATC. For laboratory results, the LOINC standard is used.

Lithuania aims at making the national eHealth information system more interoperable with other European countries’ eHealth systems. This could be achieved by using internationally used data coding standards. Lithuania has a national contact point for eHealth services and is in the process of implementing cross-boarding services for ePrescription and ePatient summary services.

According to the interview, there are many technical, legal, and organizational challenges regarding cross-border data exchange in Lithuania. The exchange of data abroad poses technical challenges for information systems and the national contact point. The implementation of cross-border data exchange is not easy because the European eHealth record exchange format differs from the data set used in the national eHealth environment, and this sets challenges for countries. One technical challenge that was noted in the interview was related to providing translations for data classification tables in the healthcare information systems. There are also some legal aspects to consider when making all or just some ePrescriptions when travelling abroad. Also, questions regarding what patients should expect from visits to foreign hospitals regarding pregnancy care as well as questions about how patients can have access to their pregnancy data abroad should be solved.

Even though some challenges were identified regarding the implementation of cross-border data exchange, Lithuania shows interest in increasing the data exchange of pregnancy data in the coming years. According to the interview, countries that are participating in the cross-border data exchange regarding pregnancy data need support and extensive resources for its implementation, as there is no comprehensive base and experience of large-scale data exchange between the Nordic and Baltic countries.

The digitalization of maternity cards in the Baltic countries seems to be in different states. In Estonia, both the paper version and digital version of the maternity cards are in use. Latvia lags behind other Baltic countries in the digitalization of maternity cards, with most pregnancy data collected and stored manually in paper versions of the cards. Lithuania, on the other hand, is the most advanced, as the cards have been digitalized since 2015. All the Baltic countries have a centralized authority that is responsible for managing pregnancy data-related procedures and policies. In addition, local pregnancy care providers, like family doctors, nurses, and midwives, have overall responsibility for pregnancy care in these countries. Note that Estonia and Lithuania have centralized information systems in place that act as national contact points for cross-border data exchange. Latvia has not yet established a centralized information system for pregnancy data.

There are national-level guidelines in place regarding the collection and recording of pregnancy data in the Baltic countries. There are also variations in the local establishments regarding the collection and recording practices of pregnancy data in each of the countries. In Estonia, for example, some of the data is recorded in local hospitals’ information systems, paper and digital versions of maternity cards, and some data is transferred to a centralized information system. Pregnancy data is usually quite fragmented in the countries, as it can be recorded for some specific establishments or on the paper versions of the maternity cards. In addition, there are no uniform data definitions for the data to be recorded in these countries. Thus, data is mostly document-based and not structured and machine-readable.

The exchange of pregnancy data across borders is still in its infancy in the Baltic countries. Mainly medical prescriptions and patient summaries can be sent across borders. The possible tools for wider cross-border data exchange are available in Estonia and Lithuania, and there is a clear willingness to increase the data exchange in this area in the coming years. In Latvia, the transition towards cross-border data exchange and digital maternity cards is more challenging because there is no national contact point in place. In each country, local establishments and hospitals are using their own platforms, databases, and information systems for pregnancy data collection and recording, which are not always connected to the central information systems of the countries. Estonia is the most advanced in using international standards for pregnancy care, while Latvia and Lithuania are mainly using national-level standards. However, the Baltic countries intend to utilize more international-level standards.

The main challenges regarding the cross-border exchange of pregnancy data are mostly time and resource-related and technical and organizational in nature. It was noted that the implementation of cross-border data exchange will not be easy because many countries can have different versions of patient summaries, for example, and the migration of these summaries sets challenges for countries. According to the interviews, the key to enabling cross-border data exchange is to ensure that there is a national-level information system in place in each of the countries and that local information systems are connected to the central information system. At least the most important data, like patient summaries and medical prescriptions, should be recorded in the central information systems. In addition, pregnancy data should be structured and uniform, which would enable the cross-border exchange of pregnancy data.