The National Board of Health and Welfare (NBHW) in Sweden has been working with the Snomed CT standard since the mid-2000s, to enable seamless national exchange of information within the healthcare sector. The Covid-19 pandemic has showed how much work that remains to implement seamless exchange of information between regions and authorities in Sweden. We have talked to the NBHW about challenges and lessons learned about implementing semantic interoperability.
Analysis
Snomed CT is an international standard for clinical terminology which consists of more than 350,000 terms and codes for describing healthcare information digitally. The standard allows for digital description of clinical information while maintaining a conceptual understanding for analysis and diagnoses between IT support systems, organisations, regions and countries. The price of the license is around 1.5 million SEK per year for Sweden as a nation, and 6-7 people work full time with standards at the NBHW. We have interviewed Daniel Karlsson who has worked with Snomed CT since 2006. He is employed as a health informatics and is responsible for managing the standard at the NBHW.
NBHW functions as a national knowledge centre to support regions’ work with the implementation of the standard. The Region has the responsibility for healthcare to its citizens in Sweden. Karlsson describes that today’s patient record systems are mostly free text-based, which makes it difficult to exchange information while maintaining a conceptual understanding without large integration costs.
The benefit of Snomed CT is that there are already concepts and codes that can be reused in future patient record systems that the regions can benefit from instead of inventing the wheel themselves.
Nationally, there is no requirement for the regions to use the standard to facilitate the exchange of information due to regional self-governance. According to Karlsson, The Swedish Association of Local Authorities and Regions (SALAR) will possibly recommend the regions to adopt the standard. At present, only Västra Götaland has decided to introduce the standard. Regional self-governance and the right to self-determination are an impending circumstance for introducing national wide standards.
The state is not allowed to decide what the regions do, healthcare is the responsibility of the regions and we have 21 organisations that decide for themselves. It is a challenge and impeding factor.
According to Karlsson, an implication of the delegated decision-making right is that Sweden may fall behind because all 21 regions make their own decisions about which standards and IT systems that are to be used in the organisation. During the Covid-19 pandemic, it has emerged that national statistics are lagging behind. This is partly due to the fact that the Public Health Agency of Sweden has its own codes for clinical information in relation to what the NBHW and the regions have, which makes it difficult to exchange information. On the other hand, Karlsson points out that Sweden has succeeded well in making patient and medical records available to citizens through the 1177 web–based care guide. This is based on the Nationell patientöversikt system, which is run by the company Inera and is owned by The Swedish Association of Local Authorities and Regions (SALAR).
Another aspect of information exchange is the need to create semantic interoperability in the healthcare sector to enable understanding of concepts between regions. In the UK a study was concluded within a five week period to identify causality between clinical factors such as age group, gender, asthma, diabetes, ethnicity, chronic breathing difficulties, heart failure, blood type and more. The sample in the study is based on 17 million patients, who at the time accounted for around 10,000 covid-19-related deaths. This was possible because a large part of the patient and medical record systems in the UK are linked to the Snomed CT. The study Factors associated with COVID-19-related death using OpenSAFELY was published in the journal Nature on July 8, 2020.
They could go from idea to manuscript in 5 weeks, then they had created the infrastructure (information system) to monitor the pandemic and anonymised data… There is no study on Covid that is based on approximately the same amount of patients.
Similar studies would have been impossible to carry out in Sweden because most of the primary care information systems store patient records as free-text and the regions have different IT systems that use different formats and standards for information. According to Karlsson, the introduction of a cross-sectoral standard is not primarily a technical problem. Instead, it is an organisational, knowledge and coordination problem to create uniform processes and routines nationally to implement Snomed CT. This is to prevent local adaptations or supersede attributes, which can violate inferencing logic and rules in the standard. Part of this challenge is that the regions themselves must build up capabilities and knowledge of how the standard is to be implemented, as each regional organisation is different and they use different IT-systems.
On the question of initiatives for cross-sectoral information exchange between public sectors, for example combining healthcare with traffic data, Karlsson is not aware of any initiatives or standards to enable re-use between sectors. One explanation he gives is that the exchange of information in the healthcare sector is multifaceted and fragmented, which makes harmonisation and exchange with other sectors difficult. This is because standards in different sectors need to be harmonised with each other to enable cross-sectoral information exchange. In addition, Karlsson points out that the need for information exchange is greatest within regions and that the NBHW has no responsibility for cross-sectoral information exchange.
It is an obstacle that the healthcare system demands for information are so great and multifaceted.
Discussion
The Covid-19 pandemic has emphasised the need of a homogeneous national standard for exchanging information to enable decision-making, produce statistics and monitor the developments more promptly. The work on implementing the Snomed CT standard has been going on for a century and a half, and yet the regions’ change management process has only just begun. It is not only a risk that the Swedish public sector falls behind, it can be argued that this is already a fact. Sweden ranks last out of 33 survey countries in the Digital Government Index 2019, and more specifically–second to last in the OECD’s OURdata Index 2019 for re-use of public data and information.
The tardiness of introducing the standard leads to a deteriorating and more expensive services within the healthcare sector that risks not meeting citizens’ expectations. The sector accounted for 11 percent of GDP in 2018, compared with 5.5 in 1970. Meanwhile, the number of care places has fallen markedly, while the number of doctors and nurses has increased. The inefficiency and increased cost in the sector shows structural problems and an inability to enable digital transformation and development. The OECD points out that the focus on digitisation and streamlining of processes and routines is not sufficient to enable digital transformation.
This would require a paradigm shift in terms of the current modus operandi – one that has been successful to realise a well-functioning e-government, but that is not sufficient enough to advance digital government efforts in the country.
OECD Digital Government Index 2019
The government and SALAR vision e-health 2025 was announced 2016 and the establishment of the Swedish eHealth Agency 2014 are examples of modus operandi to which the OECD report refers. The objective of the vision was that Sweden would have the world’s most digitised healthcare sector, which included action plans for national methods and standards for seamless information exchange. Research on digital transformation shows that the focus must be shifted from streamlining of processes and efficiency to instead creating added value for end-users. Healthcare workers are important links in the digital value-chain to generate added value for citizens and end-users. But instead the government and SALAR proclaimed another digitalization initiative in December 2020, this time to reduce administrative burden and misalignment between IT-systems. To address the problem, the perspective needs to be shifted to the entire value-chain to enable added value for end-users. Otherwise there is a risk that these digitisation initiatives are perceived as empty promises where the public sector teams-up with IT and management consulting firms to create exuberant visions.
Summary
The insight into the process of introducing national standards for clinical terminology reveals obstacles for implementing data-driven development and digital transformation within the healthcare sector. Much points to structural problems that, among other things, lead to slow decision-making, fragmented IT systems and information silos that are described as being due to delegated responsibility with self-determining regions and authorities. Reports from the OECD show that the Swedish consensus model is a contributing factor to that the nation is falling behind when it comes to data-driven development. This means that there is no easy access to structured data and information, which can be used for decision support, statistics and monitoring the progress of the Covid-19 pandemic. If standards had been implemented nationally, it would have been easier to make anonymised clinical data available for further use by other actors. For example, to create interactive graphics and visualization of causal relationships between clinical factors. Instead, Swedes had to settle for lagging statistics and Power-point presentations at the Swedish Public Health Agency’s daily presentations.
To reverse the trend of increased cost for welfare and mistrust for public institutions there is a need for an inclusive perspective on social development. Where the perspective is shifted from ever ending digitisation initiatives with a focus on cost savings, streamlining of processes and efficiency. To facilitate digital transformation with the goal of creating added value for end-users and citizens.