Clinical terminology SNOMED CT: experiences from the implementation of a terminology standard in the Swedish region of Västra Götaland

The Västra Götaland region is the first region to implement the Snomed CT standard in Sweden to standardise the clinical terminology within the region. This happens at the same time as the region undergoes a huge undertaking to implement a new medical record system – Millennium, that only partially supports the Snomed CT standard. Which imposes challenges when the region wants to utilise the standard to create a decision support system to provide individual-based diagnosis and treatment. This is a portrayal of the initial phase of the implementation of the Snomed CT on what challenges and lessons the region has acquired in the implementation of clinical terminology standards aimed to achieve seamless reuse of patient and healthcare information in the region.

Analysis

Snomed CT is an international standard for clinical terminology which consists of more than 360,000 terms and concepts for describing healthcare information digitally. The standard aims to create a uniform representation of clinical information while maintaining a conceptual understanding for analysis and diagnosis between IT support systems, operations, regions and countries. I have interviewed Sara Almvide who works as a project manager with the introduction of the standard in the Västra Götaland region. She has worked in the region since 2016 and has a past as a requirements analyst-product owner at suppliers of journal systems since 2006.

The conversation with Almvide begins with her describing the need for a uniform standard for documenting the organisation’s information needs – whether it is digital or on paper – to describe patient history. Much of the documentation in today’s health record system is free text-based, which makes it time-consuming to interpret the meaning of what someone else has written, and makes knowledge transfer and follow-up more difficult. Snomed CT is a digital standard for establishing uniform and conceptual understanding of clinical terminology. The terminology describes the language used and it needs to be decoupled and independent of the system supplier, she emphasizes. Snomed CT is based on open technology from W3C (the same technology that links documents, images and media on the web – remark of the author). However, a license is required to use and develop the standard for national needs – see the interview with the National Board of Health and Welfare, which manages Snomed CT in Sweden.

Snomed CT is a tool in our work to take the business’ need for information and describe it in a structured way… so that the systems speak the same language as reality.

The regional board of health and wealthfare decided in 2015 to use the Snomed CT standard for clinical terminology in the region. But it took until 2019 before the implementation began with the establishment of a strategy and project plan for implementation. According to Almvide, the tardiness was partly due to the fact that managers who were responsible were not directly affected by the decision and did not realise the scope of the task. Therefore, a strategy was established in 2019, to describe different levels of goals with the introduction of Snomed CT, where the first level is the establishment of a common terminology for the whole region.

We have come to the conclusion that they (health and wealthfare board) did not understand that you have to include people who are responsible for the clinical terminology in the region. If they do not tell who is responsible for introducing the terminology it will be difficult. … This is one reason that the implementation has not come as far as we wanted.

In order for the terminology to be useful, it needs to be continuously updated. The region has collaborated with the National Board of Health and Welfare to update Snomed CT and keep it up to date with today’s clinical language. The Swedish translation of the international terminology was completed in 2009 and needed to be updated since the clinical language has changed over a decade. Almvide highlights the importance that the regions in Sweden have to be involved in the development of the Swedish version of Snomed CT in order for the standard to be successful at a national level. This is because the clinical language is being developed at a regional level where healthcare is provided. The role of the NBHW is to coordinate that the development is done consistently across all regions of the standard.

The region is where the clinical language is used to document the meeting with patients in the form of medical records. Therefore, we must be involved in the development of Snomed CT together with the National Board of Health and Welfare.

The Västra Götaland region and the NBHW have established guidelines and work routines for the development of Snomed CT. The collaboration with the NBHW has exceeded their expectations and they have been sensitive to their suggestions and requests. The change management the region is undergoing is documented in the form of best practice so that other regions can take part in the lessons learned via a national group for knowledge management established under The Swedish Association of Local Authorities and Regions. The Västra Götaland region is the only region that has decided to introduce Snomed CT, however, other regions are included in the forum established by the NBHW to support the development and implementation of the standard nationally.

The NBHW has been extremely cooperative when we asked to be involved in the development with Snomed CT.

To succeed, Almvide believes that the regional board must dare to invest and allocate resources to establish structures needed to control, develop and manage the standard in the organisation. She refers to the restart that was made in 2019 – when the region established a strategy and project plan for the introduction of Snomed CT. At the same time, the region trained and certified 12 people in the development, modeling and use of tools linked to the standard. The investment in training a larger group was significant so that the group could undertake a knowledge journey together. Partly to help and support each other, and partly to anchor the change management process in different parts of the organisation. According to Almvide, it would not have worked if only one person had been sent on a course to engage the rest of the organisation to advocate the change management initiative. It is estimated that each person devoted approximately 30 percent of their working time over five months to training and certification.

We made the right choice when we invested in training a group of people that could together begin to acquire the skills to develop in Snomed CT.

At the same time as the region initiated the development of Snomed CT, the region began the implementation of a new medical record system – Millennium. The procurement of Millennium was completed in 2018 and shortly thereafter the introduction of the journal system was started, which will last until the end of 2023. Currently, around 300 people in the region are working on the implementation to configure the system to suit the region’s processes and routines. One of the requirements in the procurement was that the system should be a standard system that was available on the market. Another requirement was that the new medical record system would support Snomed CT. Almvide says that when the implementation of Millennium in the region began, it was revealed that the support for Snomed CT was as great as expected, given that it was a state-of-the-art medical record system. This is due to the fact that the requirements in the procurement were not sufficiently detailed about how the intended system would support the standard. According to her, there are no journal systems on the market today that had built-in support for the standard from the beginning and they must be configured to do so afterwards. The region was aware of this at the time of the procurement, but since the region had not started work on the implementation of Snomed CT, it was difficult to specify more detailed requirements. If more detailed requirements were set, it would disqualify all suppliers on the market, which was not a desirable outcome. Other healthcare and information systems that the region uses have no support for Snomed CT, which she describes as a lack of ability to specify detailed requirements in the procurement process.

An active use of an ontology such as Snomed CT means that we can eventually demand functionality. It is difficult to set requirements when the region has not actively worked with it. It’s like drawing a map of a country you’ve never been to.

Snomed CT has what Almvide describes as a multi-hierarchical information structure where clinical concepts can be linked to several other clinical phenomena and concepts. This makes it possible to deduce implicit connections between different clinical phenomena that may affect the diagnosis. For example, a search for medical records of a patient with inflammation of the shoulder, which consists of two concepts of shoulder and inflammation, would also present other relevant patient history that may affect the assessment linked to the search. This contributes to a better basis for diagnosing and understanding the patient’s medical history. Few medical record systems on the market support the storage of information in digital structures that the Snomed CT standard requires, which also applies to the medical record system – Millennium. However, Millennium can be configured to link concepts from the Snomed CT standard to codes and terms used internally by the system. This should be sufficient according to Almvide to enable common clinical terminology, which is the first level of four in the region’s Snomed CT strategy. However, the medical record system does not support inferencing of clinical concepts described in level three and four of the Snomed CT strategy. She hopes that when the new medical record system is rolled out throughout the region, the organisation will hopefully be ready to take on the Millennium shortcoming to make more use of the functionality in Snomed CT standard.

We believe in building an information structure that does not depend on how an individual system perceives reality. We see Snomed CT as a system-independent conceptual model and structure that serves as a frame of reference that all our information systems must be related to.

Among the lessons learned during the change management process and implementation of Snomed CT. Almvide highlights the importance of a clinical commitment as the single most important factor in succeeding in introducing a common terminology in the organisation. Practitioners must be involved in the development process because they are the ones who will use the terminology in their daily work. This means that the regional board has had to set aside time for clinical staff to participate in the development to adapt the standard to reflect the language used in the business. Another important lesson has been the importance of educating a larger group of people from different departments at the same time as it contributes with knowledge transfer, anchoring and creates momentum for the change management in the organisation.

Discussion

Implementation of Snomed CT in the Västra Götaland region shows several characteristic features of digital transformation. Such as the need to keep up with the medical technology development – where new treatment-analysis and diagnostic methods are constantly available, which demands a constant updating of the terminology used in the organisation. The iterative development process means that strategies and sub-goals can be corrected continuously to create added value for patients. Another characteristic is that the implementation of Snomed CT is a business and not an IT-centered development process. Aimed to create a uniform terminology that both people and machines can use as a reference point for business development. This enables reuse of clinical information while maintaining a conceptual understanding horizontally in the region, provided that the standard is successfully integrated into medical records and decision support systems. All in all, it creates the premises for automated decision support and strategic flexibility to adapt regional resources to achieve the goal of offering individualised healthcare.

Contrary to the iterative development of Snomed CT is the introduction of the new medical record system – Millennium that the region has procured. This change management process mimics the usual waterfall model with long lead times which is the norm in the public sector. From the start of procurement in 2014 to the planned rollout at the end of 2023, almost a decade will have passed. Another challenge with the implementation is that the system does not support the so-called multi-hierarchical information structure on which Snomed CT is based to establish explicit and implicit inferencing of clinical phenomena and concepts. The shortcomings of the Millennium system will lead to problems with fragmentation of various information management systems and structures that the region must bridge, which is central in creating decision support systems for individualised diagnosis.

The original budget of three billion for the implementation of the Millennium has already been overdrawn and the project has demanded another half a billion. This is because Cerner – the supplier of Millennium, can not deliver on time due to the system not meeting security requirements for Swedish patient data law. Internal accounting warns of further delays and cost increases before medical record systems can be operational, as practitioners and pharmaceutical experts consider the system to be outdated and risk patient safety. In addition, there is the challenge of adapting a closed system such as Millennium with Snomed CT to utilise the potential of a system-independent clinical terminology. This can lead to further delays and increased consulting fees to achieve the goal of creating the healthcare information environment of the future which is the regional slogan for the medical record systems project.

Summary

The Västra Götaland was part of a collaborative project to create the healthcare information environment of the future together with the region of Skåne and Stockholm. Where the ambition was to create common terminology nationally. Unfortunately, there will be no synergy effects from this collaboration since the region Stockholm has canceled the procurement process based on lack of competition. And Skåne has chosen not to implement the Snomed CT terminology.

The OECD’s report Digital Government Index 2019 depicts structural problems with the governance model of the Swedish public sector which makes digital transformation more difficult and perpetuate silo-based information structures. Instead of adopting an iterative-agile collaborative development process to create a common healthcare system and medical terminology. Which can change as the requirements change and enable common reuse of clinical information nationally. This is disheartening considering that The Swedish Association of Local Authorities and Regions has the task of supporting and coordinating the development amongst municipalities and regions, and also owns the company Inera that has the tagline of “creating common digital infrastructure and architecture” nationally.

If the Västra Götaland region succeeds in establishing a common terminology they have the opportunity to free themself from supplier dependencies and lock-in effects of closed medical record systems that must be configured at great cost to, for example, comply with Swedish patient data law. The implementation of Snomed CT is also a good example of how to conduct an agile change management process that has a better opportunity to create added value for patients. This is in contrast to political prestige projects to introduce the new medical record system Millennium, that erodes citizens’ confidence in the public sector’s ability to keep pace with the digital development of society.

About Clear Byte

Clear Byte has been registered as a non-profit organisation in research and development since 2011. We work for an inclusive digital transformation and community development. Based on the basic principles of openness, participation and collaborative collaboration to enable data-driven development and reuse of information to take advantage of synergies and enable innovation within and between sectors of society. Reuse and interoperability based on open technology and standards is one of our focus areas for creating innovative solutions to the multifaceted global challenges declared in global goals.

Contact us info[at]clearbyte.org if you want to know more about our work to promote trust and democratisation linked to digital transformation and social development.

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