An Interdisciplinary Terminology for Health and ... - Socialstyrelsen

4 downloads 223 Views 2MB Size Report
Aug 17, 2011 - nary terminology requires user training, application development related to the common ..... ment board,
An Interdisciplinary Terminology for Health and Social Care Final Report

By all means, quote the National Board of Health and Welfare's reports, but remember to state the source. Images, photos and illustrations are protected by copyright. This means that you must have the author's permission to use them.

Article no 2011-8-17 Published: www.socialstyrelsen.se, August 2011

2

Foreword This report describes the realization and results of the Government commission An Interdisciplinary Terminology for Health and Social Care, and it also contains suggestions for further work and administration. The commission is part of the National Strategy for eHealth investment in a common information structure for health and social care services. The report stresses the importance of governance and collaboration in order to achieve the goals of the eHealth strategy. The report also discusses issues related to responsibility and the mandate for the administration, development, skills and training needs, which the National Board of Health and Welfare believes the Government should consider. The proposed administration of the interdisciplinary terminology is described in detail together with summaries of methods and the commission's execution in three factual reports. A list of terms used can be found at the end of the report. The following individuals have assisted in the preparation of this report: Lotti Barlow, Ulla Gerdin, Ann-Helene Almborg, Bengt Kron, Christina Lindberg, Kristina Bränd Persson, Karin Ahlzén, Erika Ericsson, Anna Adelöf, Daniel Karlsson, Lisa Wolff Foster, Lena Widigson, Maria Bratt, Stefano Testi, Anna Staerner Steen and Mikael Nyström.

Lars-Erik Holm Director-General

3

4

Content Foreword .................................................................................................. 3 Summary ................................................................................................... 7 Implementation and administration ...................................................... 7 Introduction ............................................................................................ 11 Background ......................................................................................... 11 Commission ........................................................................................ 11 Decisions on SNOMED CT and participation in IHTSDO ................ 13 The project's objective and goals ........................................................ 14 The project's target groups .................................................................. 15 Project planning and realization .......................................................... 15 Starting points ........................................................................................ 20 Skills for administration ...................................................................... 20 Methods and rules for use ................................................................... 20 Social services concepts in SNOMED CT .......................................... 20 International development................................................................... 21 Means to reach the target groups ........................................................ 21 The content of the interdisciplinary terminology .................................. 22 The National Board of Health and Welfare’s terminology database .. 23 Classifications ..................................................................................... 24 Coding systems ................................................................................... 24 The clinical terminology SNOMED CT ............................................. 25 Method for administration................................................................... 25 Rules for use of the interdisciplinary terminology............................. 25 The National Board of Health and Welfare’s contribution to a common information structure ............................................................................. 27 The contribution of the interdisciplinary terminology ....................... 28 The contribution of the national information structure ....................... 28 Cooperation in the common information structure ............................ 29 Special projects ................................................................................... 32 External activities related to the interdisciplinary terminology .......... 35 National cooperation ........................................................................... 35 International cooperation .................................................................... 40 From project to implementation ............................................................ 43 Administration – the users' priority ..................................................... 43 Administration of the interdisciplinary terminology ......................... 43

5

Initial investment is needed................................................................. 46 Training ............................................................................................... 47 Global events ....................................................................................... 47 Strategic decisions that can make a difference ................................... 48 Unclear mandate.................................................................................. 49 Methods for managing the use ............................................................ 51 The National Board of Health and Welfare applies the interdisciplinary terminology .............................................................. 51 Clear national collaboration ................................................................ 52 Prospective users of SNOMED CT..................................................... 56 Resources for administration and further development ....................... 59 Basic Staffing of the administration organization.............................. 60 Costs for administration and development .......................................... 63 Administration organization ............................................................... 64 Development work .............................................................................. 64 Investigation of new areas................................................................... 65 Incentive grants for implementation ................................................... 66 Factual reports ....................................................................................... 67 References............................................................................................... 68 Appendix 1 SNOMED CT in other countries ....................................... 71 Background ......................................................................................... 71 Survey on the use of SNOMED CT .................................................... 71 Examples of the use of SNOMED CT ................................................ 72 Types of application ............................................................................ 73 Use of different SNOMED CT features .............................................. 75 Series of seminars on implementation ................................................ 76

6

Summary The expected impact of an accessible and used interdisciplinary terminology is that it will contribute to good and safe health and social care services and that the quality and performance of health and social care services will be monitored and compared in a more efficient manner. This requires that health and social care managers, students, researchers, and health and social care staff have access to sources of uniform concepts and terms as the basis for documentation, information transfer, knowledge development, research, regional comparisons and statistics. The Government commission, An Interdisciplinary Terminology for Health and Social Care to the National Board of Health and Welfare, ends on 31 March 2011. This means, among other things, that: • the clinical terminology SNOMED CT has been translated into Swedish • methods for administration and development have been developed and tested • the administration and distribution of SNOMED CT has been prepared • a large number of representatives of the target groups have been informed of or have knowledge of the interdisciplinary terminology in its entirety. The National Board of Health and Welfare has identified five components of the interdisciplinary terminology: • the nationally agreed upon concepts and terms, which are published in the National Board of Health and Welfare’s terminology database • the nationally established statistical classifications and coding systems • the clinical terminology SNOMED CT • methods for development and administration • user regulations.

Implementation and administration

The prerequisite for the implementation of the interdisciplinary terminology is that the administration of SNOMED CT is in place and that the content is readily available. The current plan for the direction of the National Board of Health and Welfare's initiatives extends to 2014. The first Swedish delivery of SNOMED CT in a standardized format is planned for October 2011. Each stage in the implementation of the interdisciplinary terminology requires user training, application development related to the common information structure and supplementing the content of SNOMED CT, e.g., for use within the social services. The National Board of Health and Welfare has knowledge of the interdisciplinary terminology content and use that no other organization in 7

Sweden has at present. It is therefore reasonable that the National Board of Health and Welfare has the initial responsibility for knowledge transfer to local and regional administration organizations. This requires a long-term strategic direction and adequate resources. The National Board of Health and Welfare proposes a planning and decision-making organization for the administration, which would consist of a council for the interdisciplinary terminology, an editorial board and a user forum. Decisions relating to the interdisciplinary terminology are proposed to be determined by the National Board of Health and Welfare's line organization. Currently, the clinical terminology SNOMED CT contains mainly concepts and terms from the field of health care. In conjunction with the National Board of Health and Welfare joining the international cooperation on SNOMED CT, the concepts and terms used within the field of social services were implemented as a target area for the content of SNOMED CT at an international level. In recent years, the National Board of Health and Welfare has received several commissions within the field of social services, which will result in defined concepts and recommended terms. These can then become resources for both the Swedish and the international versions of SNOMED CT.

Resource requirements The commission An Interdisciplinary Terminology for Health and Social Care will shift, just as the national information structure commission has, from being project-based to a sustainable organization for administration and provision as well as for further development and quality assurance. The acquired knowledge areas will be integrated into the National Board of Health and Welfare's work on knowledge management, statistics, monitoring and supervision. Their use within health and social care services should be regulated, and support and incentives to potential users must be given. The final report primarily covers the resources expected to be required to establish the administration and ongoing development of SNOMED CT. In order to maintain the interdisciplinary terminology in its entirety, it is assumed that the continued administration of other sources such as the National Board of Health and Welfare’s terminology database, statistical classifications and coding systems are guaranteed. The National Board of Health and Welfare estimates the overall resource requirements for the interdisciplinary terminology to amount to SEK 105M for the period 2011–2014. Other expenses for the proposed development, initial training and user support are estimated at SEK 67M. Research into new subject areas for SNOMED CT is estimated to cost SEK 2.3M. Moreover, it is proposed that the Government allocates an annual amount of SEK 5M for incentive grants for implementation and use during the period 2012–2014.

Control and cooperation Work within the action area of information structure for the National Strategy for eHealth investment has so far been conducted in project 8

form, divided between the National Board of Health and Welfare, the Centre for eHealth in Sweden (CeHis) and the Swedish Association of Local Authorities and Regions (SALAR) under the collective name of Common information structure. The National Board of Health and Welfare has been responsible for the interdisciplinary terminology and National information structure projects and CeHis for the applied information structure. The administration phase places great demands on management, collaboration and coordination to ensure that the common objectives of the National Strategy for eHealth are achieved. The National Board of Health and Welfare would like to see concerted and conscious development within the action area. The administration plans for the interdisciplinary terminology and national information structure include, for example, content and implementation plans, expertise and resource requirements, regulations, and descriptions of collaboration within the field. The corresponding plan for the administration of the applied information structure needs to be in place. The National Board of Health and Welfare is of the opinion that the Government should demand that the principals develop an administration plan. Clear responsibility for the applied information structure is also lacking within the field of social services. The Government should therefore specify which organization will coordinate and operate the work and how the responsibility should be divided among different actors. The common information structure will be introduced gradually. A farreaching implementation is several years away. A complete connection between SNOMED CT and the applied information structure will be made in parallel in selected national projects. In order for development across the common information structure to go as planned, the National Board of Health and Welfare proposes that the Board be entrusted, along with CeHis and SALAR, with the task of establishing cooperation on the continued development and administration. The National Board of Health and Welfare should have a coordinating role with the responsibility to regularly report to the Government on the progress.

Clarified responsibilities in certain areas

Responsibility for the concepts and terms in SNOMED CT are, with few exceptions, part of the National Board of Health and Welfare's mandate. Those exceptions which do exist belong to areas with multiple actors, and it is unclear which organization has the responsibility for the quality of the content of SNOMED CT and the financial responsibility for the administration and development. The National Board of Health and Welfare believes that the Board should have an explicit mandate to coordinate national activities that are run in association with SNOMED CT. The following areas are of particularly high priority: • that the National Board of Health and Welfare is commissioned, in cooperation with SALAR and EQUALIS AB, to deliberate and issue proposals for administration and financing within the field of laboratory medicine

9

• that the National Board of Health and Welfare is commissioned, in cooperation with CeHis and SALAR, to investigate the allocation of responsibility for the national coding systems • that the National Board of Health and Welfare is commissioned to investigate the need for a uniform dental terminology associated to SNOMED CT • that the Government issues a specific commission to the Medical Products Agency (MPA) and the Swedish Institute of Assistive Technology (SIAT) to be responsible for the content of SNOMED CT to ensure accuracy and verification in their respective domains.

Knowledge management and regulatory For the National Board of Health and Welfare, the internal use of SNOMED CT and other parts of the interdisciplinary terminology constitute an adaptation of the knowledge summaries, guidelines, health data registers and regulations to the development of electronic information management taking place within health and social care services. The interdisciplinary terminology shall, together with the national information structure, form a part of the quality management system within health and social care services. From this aspect, it is important that principals, professionals and system developers care about information quality and that they have access to and knowledge of established methods that help ensure quality. It is the National Board of Health and Welfare's view that the use of the interdisciplinary terminology needs to be regulated if the objective of improving the safety of clients and patients is to be achieved and to ensure that reliable comparisons of health and social care activities are developed. The National Board of Health and Welfare has made the preliminary assessment that the Board has the necessary authorization to standardize the use of concepts and terms as well as the classifications used within the health and social care services. This will be further investigated in the review of the National Board of Health and Welfare's regulations on information management and record keeping in health care (SOSFS 2008:14) starting in 2011. In the current situation, regulations are deemed to be the method that can best ensure wide implementation.

10

Introduction The goal of the National Board of Health and Welfare is to create and provide a national regulatory framework that contributes to knowledgebased health information systems, good health and social care services. The field of terminology and informatics is one of the National Board of Health and Welfare's working areas.

Background

The National Strategy for eHealth, which was decided upon in 2006 [1] and revised in 2010, formulates a vision for IT development in health and social care services. The strategy aims for effective information provision in health and social care services. This means both that the right person has access to relevant information in the right situation in the care process, and that it is possible to find, understand and compile information for follow-up at local and national levels. Six action areas were originally identified as being important for the national efforts: • Bringing laws and regulations into line with extended use of ICT • Creating a common information structure • Creating a common technical infrastructure • Facilitating interoperable, supportive ICT systems • Facilitating access to information across organizational boundaries • Making information and services easily accessible to citizens. The Interdisciplinary Terminology for Health and Social Care project is part of the action area of information structure.

Commission In May 2007, the Government decreed that [2]: “The National Board of Health and Welfare shall take overall national and strategic responsibility for ensuring that individual patient- and user-specific information shall become less ambiguous, easier to follow-up on and more accessible in accordance with the objectives and principles laid down in the government communication entitled National IT Strategy. The initiatives include the development of a national information structure and the establishment, provision and administration of a national terminology and classification resource.” --“The commission means further that the National Board of Health and Welfare in collaboration with SALAR shall encourage and sup11

port the introduction and use of the national terminology and classification resource in the health and social care services.” The part of the commission known as national terminology and classification resource with SNOMED CT has been carried out under the project name An Interdisciplinary Terminology for Health and Social Care. The results of the project are known as the interdisciplinary terminology for health and social care. The overall commission consisted of two parts – the National Information Structure and An Interdisciplinary Terminology for Health and Social Care, which were conducted in two projects. Fully developed and used, they will ensure that information shared between different care activities will be consistent, clear and comparable. The interdisciplinary terminology includes the concepts and terms needed in particular to describe problems, needs and goals of procedures and actions as well as results. The National Information Structure project was reported on 31 December 2009 and administered by the National Board of Health and Welfare [3]. In spring 2007, the Government determined that Sweden should be a member of the international organization1 for the administration and development of the clinical terminology SNOMED CT2. The National Board of Health and Welfare's 2007 plan [4] for the realization of the Interdisciplinary Terminology for Health and Social Care commission stated: “Ultimately, SNOMED CT will be a tool for principals in their endeavours to supply good health and social care services, that is to say procedures and actions for individuals pertaining to social services, support and service for disabled persons and health care under the applicable laws. The commission is divided into three main areas: • The National Board of Health and Welfare shall support and encourage the introduction and use of SNOMED CT. • The national terminology and classification resource shall be made known to principals and other target groups. • SNOMED CT shall be usable in Sweden through translation, harmonization and administration. However, the project is not responsible for adapting national systems and registries to SNOMED CT. One of the more comprehensive questions at issue for the project is whether or not the Board should draw up rules and guidelines for use of SNOMED CT. At present, SNOMED CT does not cover the social services’ field of activities. An important task is, therefore, to ensure that SNOMED CT is developed in this area.

1 2

IHTSDO International Health Terminology Standards Development Organization Systematized Nomenclature of Medicine – Clinical Terms

12

It is strategically essential to build up knowledge, together with the project’s target groups, about the importance of this major national investment for activities in health and social care services. Administration and financing of SNOMED CT are a long-term responsibility requiring a process-oriented working method, skills development and continuity. Experience during the project period will also provide basic material for long-term planning.”

Decisions on SNOMED CT and participation in IHTSDO The Swedish Government contributed to the formation of the international association IHTSDO in 2007. The organization, which owns and operates the clinical terminology SNOMED CT, is controlled by its members, the body of which is comprised of national authorities and bodies from 15 countries. The Ministry of Health and Social Affairs represents Sweden on IHTSDO's governing body. In connection with the commission to translate SNOMED CT, the National Board of Health and Welfare was given the responsibility for Sweden's operational cooperation and participation in IHTSDO. This means that the National Board of Health and Welfare is the Swedish national release centre for both the international and the Swedish version of SNOMED CT. Since 2007, the National Board of Health and Welfare has participated both in the governance of IHTSDO and in quality assurance and development activities around SNOMED CT. This involvement has had several positive effects. It has, for example, helped the project organization to become established quickly and has provided valuable knowledge and the possibility to influence the development of the content as well as the organizational structure. IHTSDO constantly develops guidance and governance documents for various parts of the maintenance and use of SNOMED CT, including quality assurance methods, which will also be useful tools in the National Board of Health and Welfare's work. In 2010, on the initiative of the members, a new strategic plan was developed for the period up to and including 2015 [5]. The strategic direction for IHTSDO has a clear focus on supporting the adoption and use of SNOMED CT by creating useful prerequisites. The operational plan is adjusted gradually in line with this strategy. The priority interim targets for IHTSDO and thus for its members over the next four years are to: • facilitate the use of SNOMED CT within priority user areas • create stable and efficient terminological standards within priority user areas • simplify the use of SNOMED CT along with other international standards • strengthen the professional and clinical governance of the content of SNOMED CT • maintain and strengthen IHTSDO's organizational foundation. Participation in IHTSDO is generally assessed to be of great importance for the National Board of Health and Welfare's future work and devel13

opment in Sweden in the future. This means, among other things, that the international work of the organization, with different partners, and the results that Sweden would get access to, constitute an integral part of the Swedish structure for the administration and development of SNOMED CT and thus also for the interdisciplinary terminology in its entirety. In this context it is worth repeating a few elements from the Board's project plan from 2007: It is important to note that SNOMED CT is not a ready IT solution that can be used immediately in the health and social care services. It is not a classification system and it does not include definitions, rules or directions for the use of concepts in practical everyday contexts. Nor does the terminological content at present fulfil the needs for broader use, which is the objective in the long-term, that is to say, that the system can be used both in health and welfare services as well as in other areas of social services. To create good preconditions for achieving this, extensive development work is needed that must involve several different interested parties: The system must be made available, surveyable and easy to use if it is to be useful to end users in the health and social care services. • The concepts must be packaged in purposeful and usable structures, for example, in the form of standardized treatment plans, input forms or search word templates used in EHR systems. • Regulations and user guidelines must be produced. • Educational and information material as well as competence must be accessible.” Furthermore, the National Board of Health and Welfare, with regard to the interdisciplinary terminology in its entirety, ascertains that it is a long-term project in which no one possesses ready solutions today. Ideas about how the resource should be designed and used must be discussed “in an open and coordinated dialogue, in which both know-how and commitment in the health and social care services must be utilized – among professionals and at management levels, in professional and specialist organizations, in research and education and at the international level.” •

The project's objective and goals The overall objective of this project is to, by means of the interdisciplinary terminology, provide concepts and terms for health and social care documentation, monitoring, research and knowledge development for use in computerized systems. The interdisciplinary terminology will be developed and quality assured through transparent and clear processes together with users. The goal is for the interdisciplinary terminology to contribute to information security and increased safety for clients and patients, allowing users to make reliable monitoring and comparisons of health and social care services. A further aim is that the interdisciplinary terminology will contribute to the development of evidence-based knowledge and practice by supporting proper documentation of expertise in various domains.

14

The project's target groups

The primary target groups for the project An Interdisciplinary Terminology for Health and Social Care are decision makers in Swedish municipalities and counties, health and social care service professionals with special interest or responsibility for documentation issues, professional organizations, terminology managers in Swedish municipalities and counties, IT Directors, IT vendors and actors from the National Strategy for eHealth. Care providers from the private and volunteer sectors have not been the primary target groups, partly because there are no easy methods of communication for these target groups. The National Board of Health and Welfare also made the assessment that they receive their assignments via the county council principals, who in their contracts specify the information to be reported. When the project moves to the administration phase, it is important that private and volunteer sector care providers can be accessed directly. A plan for how the administration is to establish the start-up for these and other groups should be introduced.

Project planning and realization Planning for the project was based on the following main areas: project management, information coordination, international cooperation, translation, harmonization and mapping and multi-professional terminology and collaboration. In addition, there were plans for training and support for pilot projects to encourage the use and external evaluation of the project. Some important restrictions of the project were outlined in the project plan. The project is not responsible for the development of a new knowledge base on the sources of the interdisciplinary terminology, to conduct training outside the framework of the project, to customize national and local systems or registries or for the implementation of SNOMED CT. A summary of the project activities with comments on realization follows here. • Translation of SNOMED CT The translation was conducted during the period from November 2007 to June 2010, i.e., somewhat faster than planned. On average, 35 persons worked with the translation during this period and a total of about 280,000 concepts have been translated into Swedish. Linguistic guidelines for the translation of SNOMED CT were prepared and published [6]. The administration of translation, in the next phase, means continued linguistic quality assurance and validation of content based on current knowledge and existing needs in specific professional areas. The translation sub-project is presented in a separate report. • Mapping and Harmonization The concept of mapping is used in the sense that concepts and terms in SNOMED CT are to be checked against the concepts, terms, and categories in other systems. Harmonization means that proposals for solving inconsistencies between the systems are to be presented. This work has resulted in a method for mapping tested in various systems in health and social care fields. Parts of this work were coordinated in 15

2009–2010 within the sub-projects of the Government commission on compensation in health care. Training materials relating to the method have been developed and a number of training sessions have been conducted. The mapping sub-project is presented in a separate report. The sub-project has also analyzed complex issues concerning the link between SNOMED CT and information models. Work throughout the project has been given more scope than planned due to the strong need to establish uniform general principles for this relationship, and more specifically in relation to the national applied information structure. The work on terminology binding is presented in a separate report. Work is expected to continue after the end of the project. • A Common Language This sub-project has focused on developing a common terminology within health and social care services in order to obtain clear, consistent and comparable information. It also aims to examine how SNOMED CT, the National Board of Health and Welfare's terminology database, ICF and other classifications and coding systems can support a common terminology. A method for the identification and analysis of information needs has been developed. The work has largely been conducted in cooperation with other Government commissions, primarily the SALAR project Regional comparisons: care of the elderly. Training materials have been designed as part of the support for the pilot schemes. The sub-project is presented in a separate report. • Collaboration, communication and training The original project plan included extensive efforts over several years to stimulate and support principals and other target groups to implement and use the project results. The project has worked with the collaboration in different forms. Responsibility for the sub-project “Coordination and collaboration on practical applications” was transferred to SALAR in 2008. In the Dagmar agreement (Dagmaröverenskommelsen) of that year, SALAR was given the responsibility for coordination and collaboration on practical applications and pilot projects as well as for “specific action relating to incentives and support for the principals for the introduction and use of the national terminology and classification resource with SNOMED CT” [7]. SALAR activities have been reported separately [8] [9]. In the ongoing project, collaboration with representatives of target groups has included the development of methodologies, training sessions, seminars and conferences. The work is presented in this report under the heading Cooperation in the common information structure. Communication activities have been carried out in accordance with this plan. The training activities have not been conducted as planned. The reason is mainly that it has taken time to develop methods and to document new knowledge as a basis for training materials. A large part of this foundational work had, however, been completed by the end of the project. Within the framework of the project, documentation such as training materials for the ICF (International Classification of Func16

tioning, Disability and Health) [10] and mapping for SNOMED CT in general have been developed. The plan for web-based training could not be completed during the project period. • Project management and administration The project management together with the line organization is responsible for monitoring other activities in the field of eHealth, overall strategic planning, operational management and continuous monitoring and reporting as well as for contact with clients, interested parties and partners. Collaboration with IHTSDO and responsibility for the management of Swedish user licences has also formed a part of the work. The project management has prepared the plan for the administration of the factual report Management and Administration of SNOMED CT as a Part of an Interdisciplinary Terminology for Health and Social Care. The work has been conducted in accordance with the plan. The project management has collated the results and issues that were encountered during the work, including issues that could not be handled entirely within the framework of the project and which required additional attention or to be handled separately. These matters include, for example, issues concerning the definition of subject domains for the content of the interdisciplinary terminology and the National Board of Health and Welfare's mandate as well as other liability issues relating to various forms of applications of the interdisciplinary terminology both within and outside the operational area of the National Board of Health and Welfare. • International cooperation The work carried out internationally is of great practical importance for the work being conducted in Sweden and is also crucial for the administration of the Swedish project in the future. The National Board of Health and Welfare's responsibility for the practical work during the project has constituted participation in IHTSDO's internal work, exchange of experience between member countries and the contribution of specialists in committees and working groups. The extent of the actions prompted by the participation in IHTSDO has been greater than expected, but has also proven to be of great practical and strategic value. Within these working areas, the project has been realized primarily as planned. Certain parts of the work have not been conducted as planned. Training has been implemented throughout the project but not to the extent planned. This was due mainly to the National Board of Health and Welfare's need for more time to build their knowledge of SNOMED CT and its use. Several pilot projects have been implemented. Instead of initiating and running several of its own pilot schemes, the National Board of Health and Welfare focused on coordination with other commissions already in operation wherever possible and appropriate. This has made it possible to work with several different types of projects in different vocational areas despite a relatively small number of project members. An external 17

evaluation of the project has not been implemented during the project period as the work ran according to plan. An internal follow-up will be conducted after the project ends. During the project period, continuous reporting has been carried out to the Ministry of Health and Social Affairs and the project's steering committee. Both the training and support efforts to encourage use are included among the proposals for further initiatives.

Use of resources during the project period The activities and cost estimates presented in the project plan from 2007 [4] are to a large extent based on the experiences of the Danish SNOMED CT translation project which began two years earlier. In addition to the translation, an administrative structure was scheduled to be put in place after the project, as well as other efforts that must be started to provide continued knowledge development, quality assurance and utilization. The Government allocated approximately SEK 102M for the project during the 2007–2010 period in Category 9 (1:6 Funding contributions to health care). During the project, funds have been allocated annually, based on an annual budget process and monitoring of the previous year's results. The actual results are presented in Table 1, divided into sub-projects and years. For 2011, the budgeted costs for the first three months are stated until the project's close on 31 March 2011. The amount includes salary costs for employees (based on time reporting), remuneration, administrative surcharge of salary funds (overhead), purchased services, personnel expenses, transfers, and attributed revenues. The distribution of certain major items of expenditure (licenses) between the years has been adjusted retrospectively in the table as they have been costed differently before and after the Government moved to a cost-based allocation method. Table 1: Use of funds for the project in total, per sub-project and year, and the percentage of distribution (in SEK thousand)

Project management International 2) cooperation

Total

Per cent

4,293

1,110

21,989

23.4

1,733

2,370

1,300

11,753

12.5

11,038

14,552

10,487

2,500

38,577

41.0

3,652

4,773

3,460

900

12,785

13.6

1,636 775

2,725 398

1,928 703

500 300

6,789 2,176

7.2 2.3

25,555

27,356

23,241

6,610

94,069

100.0

2008

2009

2010

7,477

5,934

3,175

3,830

2,520

Translation of 3) SNOMED CT Mapping and harmonization Multi-professional terminology Information activities TOTAL

4)

1)

2007

11,307

1)

2011

Results for approx. 7 months 2) Membership fees to IHTSDO incl. licence for SNOMED CT, other one-off charges and participation in IHTSDO's work

18

3) 4)

Incl. costs for procured translation services, quality reviewers, licence and support for tools Forecast for the first 3 months

In total, around SEK 94M was used for the commission during the period 2007–2011. The translation project has cost SEK 38.6M, i.e., 41 per cent of the total cost for the entire project. Most of the translation costs (82 per cent) are made up of purchased services and fees paid to translators and quality reviewers as well as licenses for IT tools and support. Around 35 individuals were involved simultaneously with the translation project for more than two and a half years. The heading International collaboration includes Sweden's annual membership fee to IHTSDO, which includes the national licence for the use of SNOMED CT. In 2007, an entry fee for IHTSDO was also paid as well as a separate charge for the organization's takeover of the rights to SNOMED CT. The membership fee is based on the World Bank GNI (Gross National Income) index. In 2008, a one-off grant was paid to IHTSDO for a new common administration platform. Approximately 9 per cent of the costs for international work relate to work in the management board, member forum, working groups and committees within IHTSDO. The National Board of Health and Welfare's fundamental need for IT support for translation services has been met during the project period. However, there are other specific needs for tools required for different methods that were not available during the project and which need to be developed further. Some national requirements will be gradually met by the common tools available through international cooperation within IHTSDO, which means that the total costs may be restricted. The project realization is reported in the factual report Realization of the Government Commission An Interdisciplinary Terminology for Health and Social Care. For the project realization, communication of project results and training both internally and externally have been of particular importance.

19

Starting points The commission included the following three broad conditions for the realization of the project: • The National Board of Health and Welfare shall provide the interdisciplinary terminology for health and social care services. • The interdisciplinary terminology shall be able to be communicated electronically. • The interdisciplinary terminology shall include concepts and terms for health and social care services. The following are the main starting points for the realization of the project.

Skills for administration The commission was a long-term commitment, and therefore it was important already in the project's initial stages to review the skills needed for administration. When the work started, the National Board of Health and Welfare had established knowledge and practice of terminology and classifications work but limited knowledge of the requirements for the administration of SNOMED CT. To ensure that the development of knowledge during the project could be used later in the administration, the National Board of Health and Welfare decided to employ project participants to be trained internally during the project to ensure that the necessary skills would be in place for the transition to administration.

Methods and rules for use

It is the National Board of Health and Welfare's view that the use of the interdisciplinary terminology needs to be regulated if the objective of improving the safety of clients and patients is to be achieved and to ensure that reliable comparisons of health and welfare activities are developed. The interdisciplinary terminology shall, together with the national information structure form a part of the quality management system within the health and social care services. From this aspect, it is important that principals, professionals and system developers safeguard the quality of information and that they have access to and knowledge of established methods that help to ensure quality.

Social services concepts in SNOMED CT Currently, the clinical terminology SNOMED CT contains mainly concepts and terms from the field of health and social care services. In conjunction with the National Board of Health and Welfare joining the inter20

national cooperation on SNOMED CT, concepts and terms from the field of social services as a target area for the content of SNOMED CT at the international level were also implemented. In recent years, the Board has received several assignments in the social services field, which will result in the defined concepts and preferred terms. These can then become resources in the interdisciplinary terminology and in the international version of SNOMED CT. The WHO Classification of Functioning, Disability and Health (ICF), is also a linguistic resource within the health and social care services. The concepts of ICF are partially represented in SNOMED CT today.

International development In the international cooperation on SNOMED CT, the members decided to also develop common tools for the administration of SNOMED CT. The National Board of Health and Welfare contributes to this development within the framework of the commission.

Means to reach the target groups

The National Board of Health and Welfare chose to collectively communicate the commission content, the significance for health and social care services and the tangible results by means of annual conferences, with the aim of reaching a wide audience at least once each year. The conferences have been designed in collaboration with representatives for the different target groups. The project has also, as often as possible, participated in local, regional and national conferences and meetings with materials, presentations and discussion papers.

21

The content of the interdisciplinary terminology The interdisciplinary terminology is a common resource for health and social care services3 and consists of five parts (Diagram 1): • The nationally agreed upon concepts and terms, which are published in the National Board of Health and Welfare’s terminology database • Nationally established statistical classifications and coding systems • The clinical terminology SNOMED CT • Methods for development and administration • Rules for use

Diagram 1. The resources in the interdisciplinary terminology for health and social care.

The terminology database, the classifications and SNOMED CT serve different purposes. • The terminology database is intended primarily to provide definitions of concepts and terms that are important for e.g., regulations, regional comparisons, health and welfare administration and pharmaceutical

3

procedures and action for individuals with regard to social services, support and service for the disabled and health care in accordance with applicable legislation Examples of acts are the Social Services Act (SoL, 2001:453), the Act concerning Support and Service for Persons with Certain Functional Impairments (LSS, (1993:387), the Health and Medical Services Act (HSL, 1982:763), the Care of Abusers (Special Provisions) Act (LVM, 1988:870) and the Care of Young Persons Act (LVU, 1990:52) (Source: The National Board of Health and Welfare terminology database)

22

information management. The terminology database does not provide medical concepts and terms. • The classifications are mainly intended to provide a structure for the grouping of information to be used in statistics. It is important that the classifications’ categories are relatively stable over time so that comparisons can be drawn. • SNOMED CT is primarily intended to provide the requirement for concepts and terms in functional electronic records within health and social care services. The unique benefit of the system is the possibility of linking and grouping concepts that logically belong together and to process these concepts automatically. SNOMED CT, at the present moment, cannot replace the existing terminology database as SNOMED CT does not contain textual definitions, i.e., explanations, which are needed in several different contexts. The health-related statistical classifications with hierarchical classification of groups and regulatory framework cannot be completely replaced by SNOMED CT as long as they are widely used as the primary basis for statistics, comparisons, and financial compensation within health care. However, the concepts and the terms of the terminology database and the classifications can eventually become available via the Swedish version of SNOMED CT for use in electronic information systems. The link between SNOMED CT and the international statistical classifications and other classifications and terminology systems will be made through agreements between the owners, in accordance with a mutually developed method, such as that which is currently done through a cooperation agreement between WHO and IHTSDO. Below is an introduction to the respective part of the interdisciplinary terminology.

The National Board of Health and Welfare’s terminology database The National Board of Health and Welfare provides nationally agreed upon concepts and terms within health and social care services in the terminology database. The terminology database includes definitions for general concepts within health and social care services such as health and assistance. Additionally, the terminology database includes terms used in health and social care services administration and pharmaceutical information management as well as concepts from the National Board of Health and Welfare's code of statutes. The content is largely determined by the users' need for clarity about specific terms and underlying concepts. All published terms and definitions have undergone drafting and have been circulated for comments both internally and externally in order to reach a consensus. The Terminology Council approves the publication of nationally agreed upon concepts and terms in the National Board of Health and Welfare’s terminology database. A proposal to implement the terminology database in the interdisciplinary terminology administration structure is in progress. More information about this proposal is presented in the report on the administration of the interdisciplinary termi-

23

nology. The terminology database currently contains about 600 concept definitions and terms.

Classifications The National Board of Health and Welfare provides and manages certain national statistical classifications in its capacity as a statistical authority for health care and social services. The most significant health-related classifications are: • ICD-10-SE: The Swedish version of the International Statistical Classification of Diseases and Related Health Problems, whose model is owned and managed by WHO, as well as versions adapted for dental care and primary care. ICD-10 is the foundation for national and international health care statistics. • ICF and ICF-CY: International Classification of Functioning, Disability and Health, and International Classification of Functioning, Disability and Health for Children and Youth, whose model is owned and managed by WHO. ICF is based on a biopsychosocial model for health. It contains terminology that is multi-professional and has several potential uses, including statistics. ICF is currently used in many professional areas to describe functioning, disability and health. • The Classification of treatment procedures (KVÅ): The Classification of treatment procedures includes a common Nordic surgical treatment procedure classification and a Swedish classification of non-surgical treatment procedures. The Classification of treatment procedures is used for reporting care contacts to the Swedish patient register. The National Board of Health and Welfare also administers the secondary description system NordDRG, which is a Nordic casemix system of diagnosis-related groups. The system is based on the use of ICD-10 and Nordic treatment procedures, which in Sweden means the Classification of treatment procedures (KVÅ). NordDRG is used for operational descriptions and the regulation of financial compensation within specialized hospital care in Sweden.

Coding systems The term coding systems is used here for classifications that have a less extensive or complex structure. Examples of commonly used coding systems are descriptions of gender, socio-economic background, type of housing, type of clinic and lifestyle factors. In the health and welfare service documentation many different coding systems are used depending on the type of activities and tasks that need to be registered. The coding systems help to structure documentation and facilitate searchability, and they perform a function such as sorting or selection of basic statistics. The National Board of Health and Welfare is responsible for some coding systems which, for example, are to be used for reporting to health data registers and data collection through surveys in different areas.

24

The clinical terminology SNOMED CT

SNOMED CT is an international clinical terminology developed for use in digital information systems and for the communication of information between computer systems with retained content. SNOMED CT contains approximately 300,000 active concepts with unique ID numbers, of which 280,000 concepts have been translated into Swedish during the project. The National Board of Health and Welfare provides the current Swedish translation for licensed users. SNOMED CT is a product of different countries’ and users’ requirements for concepts and terms, which have been acquired over a long period of time. The content fulfils the needs of many specialized areas, while coverage, quality and topicality in other areas is unsatisfactory. SNOMED CT contains a number of concepts and terms which, from a Swedish perspective, are inappropriate for use in today's health and social care services. On a national level, national decisions shall form the basis of which parts of SNOMED CT should be used and within which areas. Each concept in SNOMED CT has a unique ID number that allows the concept to be securely identified in electronic documentation. The concepts are linked together by relationships that organize the concepts in a number of parallel structures in 19 different areas. Examples of such areas are Clinical Finding, Procedure, Organism and Body Structure. The defining relationships in SNOMED CT provide the concepts with different properties. Examples of properties include Finding site, Associated morphology, and Finding method. The types of relationships that may be used as concepts from different areas are determined by the SNOMED CT concept model. The basic information about SNOMED CT's content and structure is presented in SNOMED Clinical Terms® User Guide, which has also been translated into Swedish [11].

Method for administration The methods are essential tools for the National Board of Health and Welfare and other actors in the eHealth sector, including other authorities, principals, professionals and system developers safeguarding the quality of information. The National Board of Health and Welfare has identified eight methods to be used in the administration and development of the interdisciplinary terminology. Of these, the methods for terminology and classification work have been in use for many years. The theoretical basis for the methods in the interdisciplinary terminology is mainly the terminology science, which is also described in this final report's method statement. All methods and their interrelationships are described in the factual report Methods of the Interdisciplinary Terminology for Health and Social Care, published (in Swedish) in spring 2011.

Rules for use of the interdisciplinary terminology The interdisciplinary terminology shall work in electronic documentation and communication. In all electronic data management, it is important 25

that there are rules to govern its use. The expectations of SNOMED CT are particularly large in terms of the ability to make comparisons and to communicate between computer systems. The interdisciplinary terminology has the potential to contribute to the development of various types of decision support and knowledge support. However, this is only possible if: • different sources are mapped to each other in a controllable manner so that the meaning of concepts are not changed • the current release of SNOMED CT is used to safeguard the individual's safety and prevent the deterioration of comparability • professions, through their organizations, control the relationships of concepts in SNOMED CT • interaction with other parts of the common information structure is maintained. The National Board of Health and Welfare has initially identified the need for a regulatory framework for the use of SNOMED CT. This constitutes the requirement of licences for users to access and use SNOMED CT. Further information with regard to this can be found in the factual report, Management and Administration of SNOMED CT as a Part of an Interdisciplinary Terminology for Health and Social Care.

26

The National Board of Health and Welfare’s contribution to a common information structure The common information structure is one of the priorities of the National Strategy for eHealth. The common information structure provides: • uniform and clear content in health and welfare documentation through the interdisciplinary terminology • generic models and descriptions (process, flow, concepts and information model) of the core processes of health and social care and the type of information needed in the process – both for the care of an individual and for monitoring and knowledge management, i.e., a national information structure • applied models, based on the generic models, describing the information needs of an activity with the help of the interdisciplinary terminology, so that they can be applied in IT solutions through a framework of applied information structure.

Diagram 2. Components of the common information structure, based on the perspective of the interdisciplinary terminology and how they relate to each other.

The realization of the common information structure project was split into two commissions within the National Board of Health and Welfare, the National Information Structure and the Interdisciplinary Terminology for Health and Social Care. The Centre for eHealth in Sweden (CeHis) has been tasked by the county councils to develop the applied information structure for health care. SALAR, in collaboration with the National Board of Health and Welfare, has been tasked by the Government to sup27

plement the national information structure based on the social services’ needs. Significant results have been achieved within each project, but in order for the common information structure to support the objective of the strategy for eHealth, further developments are required to link the different components. There is currently no mandate to develop an applied information structure for the operational area of the social services. The following describes how the National Board of Health and Welfare's part of the common information structure contributes to the goal of the National Strategy for eHealth.

The contribution of the interdisciplinary terminology The interdisciplinary terminology provides the tools for information that is created around an individual and his/her health to be described in a uniform and clear manner. The interdisciplinary terminology provides detailed content in terms of concepts and terms, classifications and SNOMED CT for the national and the applied information structure. The interdisciplinary terminology also contributes to the development and administration as well as the rules for controlled use of SNOMED CT. The detail and structure of SNOMED CT creates conditions to meet the various activities' requirements of concepts and terms in electronic records. The interdisciplinary terminology also provides the biopsychosocial model4 contained in the ICF, which is used to describe functioning, disability and health.

The contribution of the national information structure The national information structure provides tools for the information that is created around an individual – with regard to his/her activities and health – to be relevant and presented in context, linked to different stages of the care process. By identifying and describing the core processes within health and social care, and on the basis of this, structuring the type of information needed to support the process, opportunities for the development of the process supporting IT solutions are created as well as the requisite foundation for operational development. The national information structure includes generic models and descriptions of the process, concepts and information needed to structure the information so that it becomes possible to use in the core process as well as in the monitoring and control of health and welfare. The generic models both influence and are influenced by the nationally agreed upon concepts and terms. The generic models are the starting point for efforts to develop more detailed models for various applications within health care and the social services.

4

The model for describing a person's health on the basis of biological, psychological and social dimensions

28

Cooperation in the common information structure In 2008, a collaboration was established between the National Board of Health and Welfare's commission within the common information structure and CeHis. The purpose of the collaboration was to provide mutual insight into the focus, problems and results of the different commissions. Within the framework of this collaboration, the following were conducted: • Study into how components of the interdisciplinary terminology are to be used in the applied information structure. The aim was to identify problem areas requiring special efforts. • Study of the use and responsibility for coding systems at a national level. A working group with representatives from the National Board of Health and Welfare and SALAR in conjunction with the expert group on applied information structure (referred to as TIS) within CeHis conducted work to identify common classifications and coding systems, their status in terms of ownership and administration and the need for national quality assurance for use in the national applied information structure. The study was based on national projects which CeHis was engaged in at the time. The inventory showed that only a few of the classifications and coding systems had clear ownership and administration. The working group noted that there is a lack of accountability, coordination, organizational structure and established approach on a national level, to ensure quality and establish national coding systems and to issue instructions on applying concepts in statistics for health care and social services. A summary of the group's work with proposals for future work will be presented in a report during spring 2011. • Manual for the regulatory framework for interoperability5 within health and social care (RIV documentation), which CeHis developed in collaboration with the National Board of Health and Welfare. The aim is to provide support for various activities, which based on the national information structure shall describe the activities’ adapted and applied information structure on the basis of their individual needs. The RIV document also includes the methods and elements of the interdisciplinary terminology used in this context. Collaboration between the National Board of Health and Welfare and CeHis continues and details of the work that have been given special priority can be found below.

Information structure for quality registries The aim of this work was, among other things, to develop and verify the general requirement to ensure a common information structure with the concurrent use of SNOMED CT for storage and access in a uniform manner. The project Information structure for quality registries (IFK2) 5 The ability to exchange information between computer systems without the receiving system having to do the manual processing to interpret the information content

29

started in September 2008. The work included testing whether the information content of a quality registry (S-HFR – the Swedish Heart Failure Registry) could be represented by SNOMED CT and other parts of the interdisciplinary terminology, and in the next phase whether the applied data structure and SNOMED CT could be used together. The work was carried out in a pilot project involving the quality registry the Swedish Heart Failure Registry [12] [13]. Uppsala Clinical Research Centre (UCR) also participated in the project. A series of experiences were conducted that were deemed as valuable for the introduction of SNOMED CT in Sweden and for the investment that is planned for the quality registries on the basis of the review of the national quality registries conducted in 2010 [14].

Follow-up with health care associated infections The project aims to develop nationally used IT support for uniform documentation, storage and tracking of information on health care associated infections. The IT support is based on the fact that the doctor in conjunction with antibiotic prescription in the EHR indicates that the reason for the prescription is a community associated or health care associated infection or if the prescription is for preventative medicine. From the recorded information, statistics of different kinds are compiled and fed back to the health care unit. In order to obtain a nationally unified conceptual structure, approx. 20 concepts have been mapped to SNOMED CT. In 2011, the Infection Tool will be tested in two counties, and by 2012 the tool will be used within all inpatient care. The use of SNOMED CT in the Infection Tool means that SNOMED CT is used for the first time in a national, clinical application. Through this process, the development of health care associated infections can be monitored more effectively, increasing the ability to identify and evaluate appropriate procedures [15].

Information about the prescription cause Access to information about prescription causes e.g., for drug treatments is essential for good health and social care. In 2010, CeHis, with support from the National Board of Health and Welfare, conducted a preliminary study on the process of and reasons for prescription. By describing the prescription cause in a uniform manner, use of medications can be monitored in a better way and thus contribute to patient safety. The aim was to develop a general description of the entire prescription process and of the various actors' information needs for different types of treatments and procedures. In the preliminary study, it was suggested that a national structure for handling prescriptions should be built up gradually. In addition to the prescription cause the function should include knowledge support for prescriptions, dispensing aid for medications and plausibility checks for medications [16].

30

Terminology binding One of the more complex problems that must be addressed to achieve a common information structure is the connection between the applied information structure information model and SNOMED CT. One of the objectives of the National Strategy for eHealth is that information should be communicated and reused safely whilst retaining the same meaning. This requires, among other things, that information models and terminologies, two essential components in the common information structure, can be used together in a coherent manner. In both the information model and SNOMED CT there is the possibility of handling both structure and semantics as they evolved separately from one another, resulting in overlaps that must be regulated. A feature can be represented in different ways, which constitutes a risk for inconsistencies. Examples of questions concerning the placement of context are: • if something is known, unknown, present or absent • if something occurred at a given time, is under way or is planned or expected Communication and re-use of information can be impeded or hindered, and therefore there is a need to establish general guidelines that specify how the link between SNOMED CT and the applied information structure is created. It is this relationship that is called terminology binding. The need for re-use of information should govern how the information content is represented. In 2010, a cooperation project between the Interdisciplinary Terminology project and CeHis was conducted both to develop national principles for terminology binding and to describe the problems with regard to the overlap between information models and terminologies. The interim report on the terminology binding process reports the continuing work in this area that is deemed as essential and the reasons for this [17].

The National Board of Health and Welfare's terminology database and the national information structure The terms of the national information structure concept model (NI concepts) may at first glance seem similar to the specialized concepts in the National Board of Health and Welfare's terminology database. These include the names of the various plans within health and social care. The National Board of Health and Welfare is often asked how the concepts relate to each other and how they are intended to be used for communication within health and social care services. The purpose of this work was to develop a method for analyzing and describing how the concepts of the national information structure and the terminology database complement each other. Efforts to clarify the relationships between these concepts have begun to enable secure communication in general, not only electronically. During autumn 2010, representatives from the Interdisciplinary Terminology project and the working group for the national information structure analyzed and described the relations between the various concepts in the field of health and social

31

care planning. This approach should be used in future work as and when appropriate [18].

Social services – information requirements This project aims to ensure that the national information structure also covers the activities of the social services. The ongoing collaborative project between the National Board of Health and Welfare and SALAR will conduct an operational analysis, terminology work and identification and analysis of information content within the field of social services6. The respective staff from different Government agencies as well as actors from the various municipalities are involved. It will also contribute to the development of the interdisciplinary terminology so that it better meets the social services needs of concepts and terms. Work is ongoing in 2011.

Special projects Within the National Board of Health and Welfare, the Interdisciplinary Terminology project has been involved in numerous national commissions in order to contribute to knowledge of the use of the interdisciplinary terminology. These are listed below.

Inventory of the use of Classification of Functioning, Disability and Health (ICF) The inventory was conducted via a web survey in spring 2009. The result shows that the respondents (124 individuals) primarily see the potential of the ICF as contributing to a common language and structure to describe an individual's health, functioning and needs and to set goals and monitor the results [19]. The biopsychosocial model of the ICF provides a common framework for describing the health of individuals.

Regional comparisons: care of the elderly Within the Government commission “Regional comparisons: care of the elderly” the interdisciplinary terminology has been applied. The aim is for the national statistics collated on the needs of the elderly and on the agreed and actually implemented measures to be taken from primary documentation in 2014. The commission is being carried out in two separate work areas, the needs of the elderly and related actions in accordance with the Social Services Act, and the needs of the elderly and related procedures within municipal health care. The needs of the elderly and related actions in accordance with the Social Services Act A model has been developed to support a systematic approach and structured documentation using the interdisciplinary terminology. The psy6

The social services referred to activities regulated by SoL, LSS, LVU and LVM.

32

chosocial model and concepts of the ICF have formed the basis of this project. The work also includes developing an applied information architecture which is scheduled for completion in summer 2011. The work will help to increase legal security and improve the quality of the local documentation and data of the national statistics. The project results are supported by representatives from the health and social care services, management representatives of municipalities, user organizations, IT suppliers, SALAR, Famna (The Swedish Association for Non-Profit Health and Social Services) and Vårdföretagarna (The Association of Private Care Providers). The model was tested in four municipalities, evaluated and presented in the final report of the Regional comparisons of care of the elderly 2007–2009. Development work will be ongoing from 2010–2014. Participants in the collaboration are experts, representatives from the health and social care services and management representatives from five municipalities (Simrishamn, the district of Hyllie in Malmö, Haninge, Östersund and Skellefteå) and two R&D units (R&D Malmö, R&D Nestor) [20]. The needs of the elderly and related procedures within municipal health care. The aim is, on the basis of the common information structure, to develop a systematic approach for structured primary documentation. A first test has been completed and evaluated in the municipality of Mölndal. The work contributes to increased quality of local documentation, as it is based on the common information structure. The collaborative project involved experts, business representatives and management representatives from various municipalities, including the municipality of Mölndal. Development work is ongoing from 2010–2014 [21].

Need for action for persons with mental disabilities Within the National Board of Health and Welfare work aimed at developing a tool for the municipalities' inventory and outreach services for individuals with mental disabilities has been conducted. The purpose of the inventory was to identify the target group's situation and the need for action. The concepts of the ICF formed the basis for describing the needs of the target group within various fields of activity. The contents of the tool are connected to the interdisciplinary terminology to ensure the quality and comparability of future inventories. The tool has been tried and tested within mental health care and municipal activities for individuals with mental disabilities in the municipalities of Eskilstuna and Strängnäs [21].

Coding of the functional state of rehabilitation in-patient care The project has collaborated with the persons responsible for NordDRG within the National Board of Health and Welfare. The aim was to develop a coding system which describes the rehabilitation needs of inpatient care, particularly for the use of NordDRG. The result is a guide for coding of the functional state of rehabilitation within in-patient care 33

based on the ICF. The work contributes to efforts to increase the quality of the business descriptions and comparisons over time for different patient groups [22].

Mapping between non-surgical procedures and SNOMED CT There is a need to map between the classifications used in Sweden today and SNOMED CT. This work has included the mapping between the Classification of non-surgical procedures (KMÅ) and SNOMED CT. Since KMÅ is only used in Sweden, Sweden has sole disposal of the mapping process and how the results are to be used. The purpose of the KMÅ mapping is to allow the results to be used by county councils and software manufacturers in conjunction with the introduction of SNOMED CT in Sweden. When SNOMED CT is used as terminology in the digital structured records, the results of the mapping shall facilitate conversion to the Classification of treatment procedures (KVÅ) for use in statistics and in the DRG groupers. The KMÅ mapping was concluded in March 2011 [23].

Two methods – terminology and conceptual modelling It is important to distinguish between the methods of terminology and conceptual modelling as they fulfil functions in their respective contexts. The aim of the investigation was to place the various methods in relation to each other and show that they have common points but different purposes [24].

34

External activities related to the interdisciplinary terminology The interdisciplinary terminology has many stakeholders from numerous fields of activity. The purpose of this chapter is to present the results produced in collaboration with the representatives for the principals, professional organizations, education providers and national projects that have contributed to the commission.

National cooperation For the realization of the commission, the National Board of Health and Welfare participated in external partnerships and procured both skills and development measures.

The target group's demands for provision The commission included the development of a management structure and proposals as to how components of the interdisciplinary terminology could be provided, both now and in the future. The National Board of Health and Welfare has conducted three workshops to identify the requirements for a service that is primarily designed to provide the distribution of SNOMED CT. Participants in the workshops included representatives of CeHis, national projects such as the Infection Tool and quality registry projects as well as the supplier organization Swedish Medtech and their client groups. In total, between 10 and 15 persons participated in each workshop. The results of the workshops formed the basis for further investigative work and procurement.

Prerequisites for cooperation The National Board of Health and Welfare has conducted a survey investigation to describe how informatics, terminology and classification issues are handled in county-operated health care and municipal activities in five regions/counties. The aim of the investigation has been to provide greater understanding about the priorities and conditions that the municipalities and county councils have for the efforts within the field of informatics, within their own operations and for the interaction between the principals. The aim has also been to identify how and where the National Board of Health and Welfare can initiate cooperation in the relevant provinces/regions. The results show that it is possible to define organizational contact points for interactions between the national administration and county councils and municipalities. These mutually agreed upon contact points should reduce the risk of issues if, for example, the investments in the interdisciplinary terminology is managed or determined in the wrong manner. The report also addresses the needs of national support that have come to light during the investigation. In conclusion, it 35

also provides suggestions for activities that the future administrative organization may consider in order to create clear forms of collaboration with counties and municipalities [25].

SNOMED CT and pharmaceuticals SNOMED CT contains concepts that describe both substances and pharmaceutical products. In the United Kingdom, they have chosen to link the national medicinal substances and pharmaceutical products register to SNOMED CT. The same trend is currently under way in Denmark. In the United States, SNOMED CT makes up one of the national standards for pharmaceuticals. In Sweden, it has not yet been decided which path to take. A substance register for pharmaceuticals is essential in order to, from the perspective of the prescriber, create a secure identification of the substances supplied as medication to individual patients. An investigation was therefore conducted with the Medical Products Agency with the aim of investigating the need for a substance registry. Terminology standardization within the field of pharmaceuticals is essential for the continued development of various IT support systems within health care. The work has been accounted in a report [26]. In 2011, the Medical Products Agency was tasked by the Government to carry out an analysis and submit proposals with regard to how a national registry of pharmaceuticals can be established [27]. A possible link between SNOMED CT and the forthcoming substance register depends on the desired functionality of this register. If the forthcoming substance register only meets the most basic requirements, a link to SNOMED CT can be advantageous. The National Board of Health and Welfare collaborates with the Medical Products Agency in these matters.

SNOMED CT and the translation of a nursing classification On the initiative of the Department of Nursing Informatics at Örebro University, the choice of terms in the translation of SNOMED CT were compared with the choice of terms in the Swedish translation of NANDA, which is an American nursing classification. The purpose of the comparison was for the printed Swedish version of NANDA to be consistent with the National Board of Health and Welfare's term recommendations. The joint reconciliation work was rewarding both for the translators of NANDA and for those at the National Board of Health and Welfare responsible for the translation of SNOMED CT. The printed version of NANDA is consistent with the corresponding concepts in SNOMED CT SE. NANDA is owned by a U.S. organization, and Örebro University is solely responsible for the Swedish translation [28]. The knowledge and experience from mapping to NANDA was presented at the IHTSDO conference in April 2010.

National research base within linguistics Sweden has long lacked a scientific forum for research on terminology. The National Board of Health and Welfare has aided Karlstad University with the initiative of building knowledge in the subject area and to, with 36

the support of the Riksbankens Jubileumsfond Foundation, establish a research base that includes several departments, including health and welfare. A resource in the planned research is the medical corpus, described later in this chapter. The purpose of the development at Karlstad University is the longterm increased knowledge of terminology as a significant part of a controlled use of language within health and social care. In particular, this applies to access to education in the subject area.

Collaboration with a region The National Board of Health and Welfare has had several collaborations with Region Skåne, including the engagement of four quality reviewers from the region for the translation of SNOMED CT. In conjunction with the region carrying out a review of their keywords for patient records, a preliminary study with mapping to SNOMED CT was also conducted on the initiative of Region Skåne. Cooperation agreement Region Skåne and the National Board of Health and Welfare also concluded an agreement whereby the National Board would train a group of persons in Skåne, who could be engaged in a mapping project. Eight persons in a two day training session. Guidelines for disease prevention methods A priority development area within Region Skåne is the monitoring of disease prevention practices based on the guidelines of the National Board of Health and Welfare. Within the framework of the Interdisciplinary Terminology project, structures for data collection were discussed between Region Skåne and the persons responsible for the guidelines at the National Board of Health and Welfare. The intention is for data collection to be based on the SNOMED CT mapped concepts. Method for identifying information needs There are many ways to identify an organization's information needs. In collaboration with an ear specialist in Lund, the method for the identification of information needs were tested and compared. The intention is for the results to be mapped to SNOMED CT in spring 2011.

Linguistic Guidelines for Medical Texts Experts from Läkartidningen (the Journal of the Swedish Medical Association), the Language Committee of the Swedish Society of Medicine and the Swedish Centre for Terminology (TNC) participated in the development of linguistic guidelines for the translation of SNOMED CT. The linguistic guidelines have been of great help in the translation process, and a more general version was requested from, among others, organizers of medical secretary training. The purpose of developing the document Linguistic Guidelines for Medical Texts was to provide advice and guidance for those who have 37

questions on writing rules when producing text within the medical field. The National Board of Health and Welfare, Läkartidningen, the Swedish Society of Medicine and TNC have agreed upon these recommendations and have published them on their respective websites [29].

Mapping of psychiatric diagnosis concepts to Snomed CT One of the sub-projects in the Government commission of the National Board of Health and Welfare, “Developing of compensation systems within health care” [30] aims at developing a system that links (converts) concepts in the classification DSM-IV to the corresponding term in ICD10. The project's primary aim was to create conditions in the field of mental health to enable the continued use of DSM-IV as a clinical decision support system for classification and coding as well as to enable the reporting of psychiatric conditions through conversion to ICD-10. As part of the work, pilot mapping was also conducted between concepts in DSM-IV, ICD-10 and SNOMED CT. The mapping was restricted to the concepts contained in the minimum level of reporting to the National Board of Health and Welfare's patient register. A total of 84 per cent of the concepts were found in SNOMED CT. For the remaining concepts, further work needs to be conducted in order for them to be linked to SNOMED CT.

Diabetes concepts in SNOMED CT The issue was initially about whether SNOMED CT contained the concepts and terms that corresponded with the clinical needs of diabetes care. The National Board of Health and Welfare chose to work with two doctors to study the situation of the field of diabetes. The starting point was to identify and document the concepts required for a complete diabetes patient record and the quality registry for diabetes. The diabetes monitoring system Diabase was used in the identification process. The study also included the testing of an early version of the method for mapping to SNOMED CT. The study showed that the majority of diabetes terms used within health care can be found in SNOMED CT. The terms that could not be found were those regarding training of patients with diabetes. The study was reported in an article in Läkartidningen [31].

Children's health care data project The children's health care data project has been run as a cooperation project between SALAR, the School of Health Sciences in Jönköping and the National Board of Health and Welfare. The purpose of this project was to develop a nationally agreed upon model for information management within and between county council and municipal activities for children's health care and school health care. In conjunction with a working group, the project has identified, analysed and specified information content in order to develop clear, consistent and comparable concepts and terms within children's health care and school health care. The result can

38

be used in structured documentation within children's health care and school health care. The working group included representatives from the health and social care services, also representing the related professional organizations, and a postgraduate student from the School of Health Sciences in Jönköping. The goal was for the concepts used to document the child/student health and procedures to be described and mapped to the relevant codes in ICF-CY. The work supports the increased quality of information management by providing health care professionals with a consistent interpretation of the information content [32].

Information for admission and discharge from inpatient care The aim was to identify and analyse the information content of admission and discharge from inpatient care and to implement various elements of the interdisciplinary terminology. The work was carried out in collaboration with a multi-professional working group composed of representatives from Region Skåne, Region Västra Götaland and Västerbotten County Council. The result of the work is a process and information model as well as identified concepts, terms and classifications. This helps promote the transfer of information between inpatient and outpatient health care and social services. It also helps to ensure that the primary EHR documentation follows the National Board of Health and Welfare's Regulations for Collaboration at Admission and Discharge in Hospital Care (SOSFS 2005:27) and the National Guidelines for Stroke Care [33].

Multi-professional collaboration The National Board of Health and Welfare has undertaken a preliminary study in collaboration with four7 professional organizations. The aim was to identify and analyze the information content in order to obtain clear, consistent and comparable concepts, terms and classifications based on each profession's information needs within the field of nutrition. One additional aim was to further develop the methodology for the identification and analysis of information content. The results from this preliminary study show that the generic health care process can form a part of this method. The preliminary study also shows that both the process and documentation method need to be further developed and tested in order to become stable. The National Board of Health and Welfare believes this method to be a significant part of future work.

Medical text corpus The SNOMED CT translation process involved the need to reconcile the proposed Swedish terms against the scientifically used terms. The aim was to develop a corpus based on the articles from Läkartidningen over the past 13 years (1997-2009) through a collaboration between the Department of Swedish at the University of Gothenburg and Läkartidnin7 The Swedish Association of Occupational Therapists, the Swedish Association of Registered Physiotherapists, the Swedish Association of Clinical Dieticians and the Swedish Society of Nursing

39

gen. In 2011, the University of Gothenburg took over responsibility for the corpus. The corpus is available at www.medicinskkorpus.se. The corpus makes it possible to find out how the various terms are used in medical texts and to carry out linguistic studies. Other health care professions have also shown an interest in contributing to the corpus content with specialist texts from various sources. This makes the corpus more interesting from a linguistic perspective as well as from a terminological perspective. The University of Gothenburg has written numerous articles about the medical corpus and has presented the results of its research at national and international conferences [34].

International cooperation There is a need for an efficient exchange of information in health and welfare both nationally and internationally. This requires that health and welfare documentation is made in a manner that allows information content to be exchanged securely and with the same meaning so that it can be read and understood by both the sender and the recipient. The National Board of Health and Welfare monitors and participates in several initiatives that focus on functioning information exchange and knowledge building in this area.

IHTSDO Through the membership in IHTSDO, the National Board of Health and Welfare participates in various initiatives for cooperation and harmonization with various international organizations working in the field of health information standards as well as terminology, coding systems and classifications. The purpose of these activities is to ensure that the content of SNOMED CT corresponds to the users' needs in specialized areas. It also aims to increase the benefits and usability of the terminology by securing the use of SNOMED CT in conjunction with other established standards. Examples of areas included in IHTSDO's harmonization are laboratory medicine, medical devices, product identification, and coding systems and classifications for various areas of operation and application. It is proposed that the National Board of Health and Welfare be tasked with participating in the activities for standardized methods related to the use of SNOMED CT.

Collaboration between IHTSDO and WHO In 2010, IHTSDO and WHO established a long-term collaboration to develop and harmonize the contents of each organization's standards, to create “approved” mappings between WHO classifications and SNOMED CT and to develop common terminology products, particularly in the context of WHO's ongoing audit work for ICD (ICD-11). Other classifications, such as ICF and ICHI (International Classification of Health Interventions) are included in the collaboration. The National Board of Health and Welfare endeavoured the start of the cooperation and is now participating, through IHTSDO, in the specific reference 40

group that is managing the strategic and practical cooperation. It is proposed that the National Board of Health and Welfare is tasked to participate in the cooperation, for example through mapping activities that contribute to greater consistency between the classifications and SNOMED CT.

Nordic cooperation The National Board of Health and Welfare has long been involved in a Nordic agency cooperation concerning health and social statistics. In the field of classification, there is a Nordic centre of excellence that acts as an interface between WHO's classification activities and each country's authorities, specifically in the field of classifications and terminology. The role of the National Board of Health and Welfare is to ensure that WHO's international legal framework and other statistical conventions within the field of health are made available for operations covered by the relevant statistical reporting. The National Board of Health and Welfare contributes to allowing national and international comparisons and for indicators to be developed in order to further enhance health and social care quality and patient safety.

Smart Open Services for European Patients The importance of being able to share health and social care information has been highlighted within the European Commission as a priority work area for the member states, and eHealth issues have in general been given new impetus within the member cooperation. The European cooperation project epSOS (Smart Open Services for European Patients) is one example where 23 member countries all work together to develop and test methods for the exchange of health information in a secure manner across borders. The National Board of Health and Welfare initially participated in this work in the field of semantics. The epSOS project has decided to use SNOMED CT concepts and concept ID numbers wherever possible. The epSOS project also uses classifications such as ICD-10 and ATC (pharmaceuticals) to communicate information across borders. Concepts from SNOMED CT make up more than 10 per cent of the terminology in epSOS. They particularly apply to information on hypersensitivity, allergies and blood groups. ICD-10 represents just 20 per cent, with the Anatomical Therapeutic Chemical (ATC) Classification System being the dominant terminology. The Swedish participation in epSOS was conducted by the SepSOS8 project. In 2011, pilot tests will be conducted in ten of the participating countries. The pilot tests were designed to provide clear patient information tests and quality assurance of content, features and selected technology. The Swedish contact point for the pilot operation is Apotekens Service AB. It is proposed that the National Board of Health and Welfare is tasked with participating in the Swedish part of the European cooperation project with responsibility for quality assurance of translation and mapping.

8

http://www.cehis.se/eu-samarbete/sepsos/

41

Standards and Standardization Standards are national and international agreements aimed at creating uniform products, conditions and practices in various fields within and between countries. The standards are developed and funded by the stakeholders within a common area. By concluding agreements, the member states and stakeholders undertake to use these standards and to help to maintain and develop them. The various information standards are key components of the health information systems aimed at supporting knowledge development and information use for health promoting activities, health care and treatments as well as social care. The realization of the significance of such an information system, both for society and the individual, is the basis for the development of many systems currently in use worldwide. Within the information system used by the United Nations, WHO, for example, manages several standards related to health information. WHO member countries have adhered to common regulations for information standards as a basis for global epidemiological surveillance and statistical monitoring of public health, mortality and health performance, but also for basic clinical documentation. The work includes the implementation, maintenance and further development of the WHO international classifications, terminologies and other regulations that are essential for uniform data collection and statistical comparability. The National Board of Health and Welfare monitors the work within the framework of its commission in the relevant fields. Sweden's membership in the IHTSDO also means a commitment to the standards for the administration of SNOMED CT. A large number of standards within health and social care are developed, adopted and published globally by ISO (International Organization for Standardization), in Europe by CEN (European Committee for Standardization) and in Sweden by SIS (Swedish Standards Institute), of which the National Board of Health and Welfare is also a member. The National Board of Health and Welfare's responsibility for the supervision of activities is based on legislation and its own regulations, and they always take precedence over a standard. The National Board of Health and Welfare's criterion for participating in standardization work is that the purpose of the prospective standard is within the framework of the commission of the National Board of Health and Welfare and that it is of general significance for the Board's regulation, knowledge management and supervision activities.

42

From project to implementation The expected impact of an accessible and used interdisciplinary terminology is that it will contribute to good and safe health and social care services and that the quality and performance of health and social care services can be monitored and compared in a more efficient manner. This requires that managers of health and social care services, students, researchers, and health and social care staff have access to sources of uniform concepts and terms as the basis for documentation, information transfer, knowledge development, research, regional comparisons and statistics. The first stage in the Government commission for the National Board of Health and Welfare ends on 31 March 2011. This means, among other things, that: • the clinical terminology SNOMED CT is translated into Swedish • methods for administration and development have been developed and tested • the administration and distribution of SNOMED CT has been prepared • a large number of representatives of the target groups have been informed of or have knowledge of the interdisciplinary terminology in its entirety.

Administration – the users' priority

Representatives of target groups, e.g., IT suppliers, have identified credible administration as being the single most important prerequisite in order for principals and suppliers to undertake to work with the introduction of SNOMED CT in EHR systems. The implementation of the administrative organization has therefore been prioritized now that the project is moving over to the implementation and use of the results. The management and administration of the interdisciplinary terminology and the national information structure has been described by the respective projects. The administration plans include, for example, content and implementation plans, expertise and resource requirements, regulations, and descriptions of collaborations within the field. The corresponding plan for the administration of the applied information structure needs to be in place. The National Board of Health and Welfare is of the opinion that the Government should demand that the principals develop a management plan.

Administration of the interdisciplinary terminology The five parts of the interdisciplinary terminology have to be managed and administrated. These are:

43

• the nationally agreed upon concepts and terms, which are published in the National Board of Health and Welfare’s terminology database • the nationally established classifications and coding systems • the clinical terminology SNOMED CT • the methods for development and administration • agreements and user regulations. The National Board of Health and Welfare currently has established procedures for the administration of its terminology database. The terminology database needs to be developed to be integrated with the publication of other sources such as quality indicators and modelling concepts from the national information structure. The terminology database must also be developed technically in order to be linked with the service for the distribution of the interdisciplinary terminology. A requirement specification was developed in 2011. The National Board of Health and Welfare currently lacks effective tools for the management of the classifications used for reporting to the health data registers. A review of features and technology support should be made in order to coordinate with the administration of SNOMED CT when possible and desirable. The administration of the classifications is not dealt with in detail in this report. Work is ongoing in 2011. The factual report Management and Administration of SNOMED CT as a Part of an Interdisciplinary Terminology for Health and Social Care describes the administration area's planning and decision-making organization, the implementation of the administration, user support and technical conditions for the provision and use. It is proposed that the National Board of Health and Welfare is commissioned with the task of staffing and deploying the administrative organization of the interdisciplinary terminology from April 2011.

Planning and decision-making organization Three groups have been proposed: an advisory board for the interdisciplinary terminology, an editorial board and a user forum. Decisions relating to the interdisciplinary terminology are proposed to be made by the National Board of Health and Welfare's line organization. The interdisciplinary terminology is a part of several different areas of responsibility within the National Board of Health and Welfare. The national information structure with its generic models is one of these areas of responsibility.

44

Diagram 3. The diagram describes how the various parts of the planning and decision-making organization for the interdisciplinary terminology interact.

The Advisory board for the interdisciplinary terminology The purpose of the Advisory board for the interdisciplinary terminology is to deal with issues of a strategic nature. The Advisory board includes individuals who can contribute to the stable administration and development of the interdisciplinary terminology from their different perspectives and roles. The Chair of the Advisory board is the Director of the Department at the National Board of Health and Welfare, where the interdisciplinary terminology is organized. The secretary is the Head of the unit at the National Board of Health and Welfare, where the interdisciplinary terminology is organized. Other participants are: • Swedish official representatives of the IHTSDO cooperation • Representatives of the National Board of Health and Welfare's different departments and IT unit as well as of the national information structure • Representative for CeHis • Representative for SALAR • Representative for the Medical Products Agency • Representatives of private health care providers • User forum Chairperson

Editorial board The role of the editorial board is to assist in quality reviewing and problem solving. The editorial board handles issues within the areas of terminology, classifications, coding systems and SNOMED CT. Questions that may be relevant to discuss in the editorial board are methods for mapping, modelling, translation, synonym management, subset management, classifications, coding systems and the terminology database. The edito45

rial board has the opportunity to collaborate with internal and external experts in each area. These experts are appointed by their respective organizations at the request of the National Board of Health and Welfare. Which experts are called to the editorial board meeting, depends on the issue that is up for discussion. The Chair is the person at the National Board of Health and Welfare who is responsible for the administration of the interdisciplinary terminology.

User forum The user forum has the task of providing users' views on the administration and the need for development of the interdisciplinary terminology through dialogue and clear communication channels. Representatives of all stakeholder groups are welcome to the user forum. Initially, the National Board of Health and Welfare intends to organize two meetings per year. The Chairperson is a representative who also participates in IHTSDO Affiliate Forum. The secretary is appointed by the group. Other participants include: • Representatives of patient and client organizations • License holders of SNOMED CT • Users of the interdisciplinary terminology • IT suppliers • Health and social care service providers • Professional organizations • Universities and university colleges • Other education providers • The National Board of Health and Welfare and other relevant authorities • etc.

Initial investment is needed

The successful introduction of the interdisciplinary terminology requires the dissemination of knowledge to key employees who are active within health and social care services. In Sweden, for example, knowledge of SNOMED CT is so far only concentrated on a small number of individuals, most of whom work at the National Board of Health and Welfare. The concentration means that the National Board of Health and Welfare must assume an important role in the future of knowledge-building. The transfer of knowledge through traditional education can be effective if it focuses on key roles with good geographical and occupational distribution. This is described in the next section on training education initiatives. Knowledge transfer also takes place between participants in working groups with the aim of introducing structured and standardized EHR documentation. The employees of the National Board of Health and Welfare need to participate in such projects for a transitional period. They also need to transfer knowledge to others as well as build up the internal skills about the role of the interdisciplinary terminology in the health 46

records. The section on prospective users describes a number of such projects. In order for SNOMED CT to be able to be introduced, the internal skills of the National Board of Health and Welfare need to be developed. The section on continuation of the terminology binding work describes some areas of concern, including how the pre- and post-coordinated SNOMED CT expressions are to be stored and reused. It is highly likely that the need for both internal and external knowledge and skills development at the National Board of Health and Welfare will be extensive over the next few years, only to then gradually decline. By the same token, costs will be relatively high initially and then decrease.

Training For the interdisciplinary terminology work to achieve all its goals, it must be made available and be used in accordance with established standards and practices. Availability can be controlled by national decisions, while the implementation and use is dependent on the existence of knowledge of the interdisciplinary terminology content and opportunities of the target groups. Those who require the knowledge are buyers and suppliers of information systems, documentation managers in various activities, health and welfare professionals, professional organizations and training providers. All these groups have specific information needs that are dependent on their individual roles. Health care professionals and staff within social services have a particularly important role as end-users. The National Board of Health and Welfare has knowledge of the interdisciplinary terminology content and use that no other organization has at present. It is therefore reasonable that the National Board of Health and Welfare takes initial responsibility for the knowledge transfer to local and regional management organizations. This requires a long-term strategic direction and adequate resources. It is proposed that the National Board of Health and Welfare is commissioned with the task to: • draw up a plan for knowledge transfer over the next three years in collaboration with the target groups • develop training material for interactive, web-based courses • be responsible for the training of 250 experts and trainers in the different parts of the interdisciplinary terminology over the next three years. • be responsible for both the initial training of experts and instructors (locally as well as regionally) and for the preparation of training materials.

Global events

The EU has recently decided to improve the possibility for citizens to seek health care in other countries through the Directive on cross-border health care. This places additional demands on secure patient information and that translations and mappings are correct. The interdisciplinary terminology has proven methods and processes for the quality assurance of 47

translation and mapping between concepts in e.g., SNOMED CT and ICD-10. These methods should be used at a national level and are also recommended at a local and regional level. In the European eHealth interoperability project for the sharing of medical reports and prescriptions across borders (epSOS) it has been decided that the concepts and terms included should be identified with the help of, for example, SNOMED CT and ICD-10. Ten EU countries are currently members of IHTSDO. SNOMED CT is currently used in other countries for different purposes. The National Board of Health and Welfare has drawn up a specification of the available knowledge on these areas of application. This specification is presented in Appendix 1.

Strategic decisions that can make a difference The interdisciplinary terminology shall contribute to information security for health and social care services. The National Board of Health and Welfare has identified four areas where the interdisciplinary terminology can make a difference and where strategic decisions are required for the implementation of SNOMED CT: • For structured individualized health and social care documentation. • For the transfer of individualized information between different EHR systems, to the quality registries, the National Patient Overview and the Board's health data registers. • For the secure cross-border European exchange of individualized information. • For the development of evidence-based knowledge and decision support systems. An important prerequisite for achieving the interdisciplinary terminology objective is that all Government commissions which have a bearing on the national strategy for eHealth shall also be developed on the basis of the common information structure for health and social care services. For the use of SNOMED CT, the National Board of Health and Welfare recommends that activities and professions within health and social care start by identifying their needs for concepts and terms. The National Board of Health and Welfare also recommends that the documentation is well structured in all applications where SNOMED CT is to be used. These two recommendations will facilitate the use of SNOMED CT. The National Board of Health and Welfare further proposes that principals, professionals and suppliers etc. make reference sets from SNOMED CT that correspond to the identified need for concepts and terms. Each reference set is given a unique identity which makes it possible to identify it within an EHR system. The National Board of Health and Welfare suggests that owners are assigned to each reference set. The owner is responsible for the content corresponding to the identified need and for ensuring that it is managed and updated according to the Swedish version of SNOMED CT. The National Board of Health and Welfare proposes in its plan for administration that the reference sets are made available through the national ser48

vice for distribution. The National Board of Health and Welfare further proposes that a specific agreement is concluded between the reference set owner and the National Board of Health and Welfare.

Unclear mandate The responsibility for the concepts and terms in SNOMED CT is, with few exceptions, a part of the mandate of the National Board of Health and Welfare. These exceptions have the common denominator that they belong to areas with multiple actors, and it is unclear which organization should take responsibility for maintaining the quality of the content of SNOMED CT and the financial responsibility for its development and administration. The National Board of Health and Welfare believes that the authority should be given an explicit mandate to coordinate the national activities that are carried out in relation to SNOMED CT.

The common information structure The national common information structure for health and social care services needs to be highlighted as a specific responsibility and development area. Initiatives for the action area of information structure within the national strategy for eHealth have so far been project-based, and divided between the National Board of Health and Welfare, CeHis and SALAR. This places great demands on management, collaboration and coordination to ensure that the common objectives of the National Strategy for eHealth are achieved. In addition, there is no clear responsibility for the applied information structure within the field of social services. The National Board of Health and Welfare would like to see a concerted and conscious management of development within the action area.

Pharmaceuticals, medical devices and assistive devices SNOMED CT includes concepts and terms for pharmaceutical products and substances, medical devices (MPA) and assistive devices (Swedish Institute of Assistive Technology). The National Board of Health and Welfare has deemed that the Government should commission the Medical Products Agency and the Swedish Institute of Assistive Technology to take responsibility for ensuring that the content of SNOMED CT which affects their areas is correct and verified.

Laboratory medicine There is no designated national standard terminology within the field of laboratory medicine and its use is not regulated. The field includes clinical bacteriology, clinical immunology, clinical chemistry, clinical virology, and transfusion medicine. Information about different types of tests, units and values are commonly used in health care as a basis for decisions about treatment, and the correct interpretation of such information is therefore crucial for patient safety. Currently the most extensive and active quality assured concept system in Swedish is based on the international system NPU (Nomenclature of Properties and Units), which provides names and codes for 49

laboratory tests. With regard to the project for the National Patient Overview (NPO), Arkitekturledningen at SALAR has decided to use the NPU as the coding system for the field of clinical chemistry. The National Board of Health and Welfare believes that the terminology from the field of laboratory medicine should be included in the interdisciplinary terminology and that its use should be regulated in a similar manner. The Swedish version of NPU terminology is currently managed by EQUALIS AB, which also conducts quality assurance within laboratory medicine. In order for the National Board of Health and Welfare to take formal responsibility for the laboratory medical terminology in the same manner as it has taken responsibility for other parts of the interdisciplinary terminology, continued quality assurance and management must be secured, either externally or internally. It is proposed that the National Board of Health and Welfare is commissioned, in cooperation with SALAR and EQUALIS AB, with the task of deliberating and issuing proposals for the administration and financing.

Dental terminology A number of dental care concepts and terms are contained in SNOMED CT. The National Board of Health and Welfare has conducted a special analysis to describe the needs for the concepts and term within dental care and the relationships between the authorities who currently followup with dental care issues. The Swedish Dental Association and several county councils have expressed a desire to compare their terminology with SNOMED CT, but there have not been any resources available for such work. It is important that dental care concepts and terms are based on SNOMED CT and the common information structure. A special commission is required in order for this task to be implemented. It is proposed that the National Board of Health and Welfare is commissioned with the task of investigating the need for a uniform dental terminology related to SNOMED CT.

Coding systems The National Board of Health and Welfare is, together with Statistics Sweden, responsible for the coding systems that are a part of the Board's health data registers. The National Board of Health and Welfare has, together with CeHis, stated that the responsibility for the other coding systems used nationally and regionally in the national registers are unclear. Although there is a consensus regarding the need of nationally managed coding systems and specifications/rules, there is currently no coordination, established organizational structure or established approach to these issues at a national level. This situation counteracts national unity and thus hinders communication, good quality statistics and the production of comparable data for the control and management. It is proposed that the National Board of Health and Welfare is commissioned, in cooperation with CeHis and SALAR, to investigate the responsibility for the national coding systems.

50

Methods for managing the use

The transfer of information between electronic systems requires uniform terminology usage and structured information to ensure information security, which is of significance for the safety of individuals within health and social care. Some of the positive effects of the use of the interdisciplinary terminology are increased information quality and new opportunities for training and development. The EU Directive on cross-border health care together with the national efforts for improved utilization of information technology within health and social care requires crossborder consistency and an unambiguous management of concepts and terms. The National Board of Health and Welfare makes the preliminary assessment that the Board has the necessary authorization to standardize the use of concepts and terms as well as of classifications within the health and social care services. This will be further investigated in the review of the National Board of Health and Welfare's regulations on information management and record keeping in health care (SOSFS 2008:14) starting in 2011. In the current situation, regulations are deemed to be the method that can best ensure widespread implementation.

The National Board of Health and Welfare applies the interdisciplinary terminology For the National Board of Health and Welfare, the internal use of SNOMED CT and other parts of the interdisciplinary terminology constitutes an adaptation of the knowledge summaries, guidelines, health data registers and regulations to the development of electronic information management systems taking place within health and social care services. Specifically, this means that the National Board of Health and Welfare sets out the information content in the knowledge summaries, etc., with uniform and consistent concepts and terms taken from the terminology database, various classifications and SNOMED CT. It also means that the National Board of Health and Welfare can contribute to comparable follow-ups by attaching templates for electronic data collection to the guidelines. The structure and content of the health data registers also needs to be reviewed in order for data to be retrieved from local and regional information systems and for statistics to be compiled in an efficient manner. For research, this development brings about the opportunity of comparing data with a higher degree of detail. If the terminology database, classifications and SNOMED CT are used in the applied information structure together with the national information structure, it will be possible to control the content and the context to which the information belongs. Information about context is relevant for the quality of information in the electronic health records and is therefore of significance for the safety of patients. It is currently difficult to ensure this type of control. In the next generation of information systems, it should be possible to carry out supervision within this area.

51

Clear national collaboration

The National Board of Health and Welfare proposes that the introduction of the interdisciplinary terminology is done gradually. The National Board of Health and Welfare believes that the work of SALAR and CeHis is essential for the realization of the common information structure described in the stages below. This work has already begun and will continue for a number of years. But the introduction of SNOMED CT can also be done through local applications, as set out in stage one. The prerequisite for the introduction is that the organization for the administration of SNOMED CT is in place and that the content can be made available in a technically efficient manner. The first release is scheduled for October 2011. The different stages in the implementation are linked to the user training, the application development related to the common information structure and the supplementation of the content of SNOMED CT, e.g., for use within the social services. The current plan for the direction of the National Board of Health and Welfare's initiatives extends to 2014. The pace and extent of use are dependent on available resources and the coordination decisions which are reached within the common information structure. It is proposed that the National Board of Health and Welfare is commissioned, in cooperation with CeHis and SALAR, to establish the coordination for the continued development and administration. The common information structure will be introduced gradually. However, a far-reaching implementation is several years away. A schematic description of the various stages is presented below. For some purposes, SNOMED CT can be put into use as early as 2011, see stages 1 to 3 below. Simpler applications can be implemented without being completely connected to the applied information structure. In selected national projects, more complete connections will be made in parallel, while the terminology binding issues are examined further.

52

Stage 1 Preparation prior to using SNOMED CT

Diagram 4. Process stage to be reviewed when changes are made to the structure of the EHR systems

Diagram 4 illustrates the different stages that an operation wishing to change its EHR system shall go through. The expected impact of a structured documentation using SNOMED CT is described to the right of the diagram. At this stage, structured concepts and terms are linked to local documentation templates, pending the full implementation of all elements of the common information structure, e.g., an applied information structure within the field of social services. Already at stage 1, the operation can describe the information content with help of the interdisciplinary terminology and by making additions to the National Board of Health and Welfare's guidelines so that it is possible to monitor the guidelines in a uniform manner. The developments described in stages 2 and 3 below focus on the use of SNOMED CT in the context of quality registries. A similar development can take place in other areas, such as the use of SNOMED CT to represent information that is associated with national guidelines on different subjects.

53

Stage 2 The link between local documentation templates and quality registries

Diagram 5. SNOMED CT, which is used in the templates, can be used for transfer of information to the quality registries

If SNOMED CT is used both in local documentation templates and the quality registries, the information can be transferred to the quality registries in a controlled manner. This solution leads to the structuring of health and social care documentation, the use of documentation templates, as well as the use of uniform terms. Furthermore, it also makes it possible to transfer information from documents to the quality registries. The use of uniform terms also means that information can be used locally for monitoring and decision support. This solution does not require a link between SNOMED CT and the other elements of the common information structure and can therefore be used until all elements of the common information structure are fully implemented. This means that an adjustment to the common information structure may be made later. This stage leads to increased knowledge and local improvements in information management, which is a step in the right direction while waiting for the other elements to be put in place.

Stage 3 The link between SNOMED CT and the national applied information model

Diagram 6. When all elements of the common information structure are in place, information can be transferred on a national level. This will also facilitate the international transfer of concepts and terms

When both SNOMED CT and the other elements of the common information structure are used, this allows the possibility of transferring information within Sweden while maintaining the meaning of the content. This solution leads to the structuring of health and social care documentation and the use of documentation templates as well as the use of uniform concepts and terms within Sweden. Furthermore, it also makes it possible to transfer information from the EHR system to the quality reg54

istries and national health data registers. The use of uniform concepts and terms also means that information can be used locally and nationally for monitoring and decision support. For this to be feasible, further investigative work is required in accordance with the below. Continued work on terminology binding In SNOMED CT, it is possible to combine existing concepts and thus create new concepts such as, “Fracture of the left femur.” More knowledge is needed about how these pre- and post-coordinated SNOMED CT expressions are to be stored and reused. No country that currently uses SNOMED CT has a solution for this issue. In the aforementioned terminology binding process, a collaboration was proposed between the National Board of Health and Welfare and CeHis to investigate how this can be tested in a laboratory environment. Other pre-conditions are that there are rules for the development of documentation templates based on the national applied information model and how the primary documentation in the EHR systems will be reused for reporting to the quality registries. These jobs require internal and external resources, both nationally and internationally.

Stage 4 Development of evidence-based decision support systems

Diagram 7. Development of evidence-based decision support systems

The IT based decision support systems consist of three parts: a knowledge base, an inference engine and a communication element that presents the results to the user. The use of SNOMED CT together with the common information structure in its entirety provides the basis for the development of the knowledge base and inference engine. The decision support system is integrated into the documentation of the care process and interacts with staff, for example, by automated reminder dialogue boxes. SNOMED CT and the information structure together provide the preconditions for the establishment of a national evidence-based decision support system, which should contribute to increased patient safety, improved quality of care, increased efficiency and more equitable care.

Alignment of IT tools for mapping and translation The collaboration within IHTSDO includes an ongoing development of IT tools including translation and mapping. This provides the possibility 55

of integrating international support for the continued development of the National Board of Health and Welfare's administration of SNOMED CT. The easiest way to bring about a Swedish adaptation of the tools is likely to be by acquiring the help of the developer. From the Swedish side, it is important to specify the requirements for the Swedish adaptations and to communicate with the individual(s) involved in further development. This requires specific resources.

Prospective users of SNOMED CT The National Board of Health and Welfare addresses both its internal organization and the primary target audiences with information about the interdisciplinary terminology. When the commission is complete, work begins to support and encourage its implementation and use. The National Board of Health and Welfare has begun planning the implementation and the calculation of the resource requirements in collaboration with a number of actors. It is proposed that the National Board of Health and Welfare be commissioned, in collaboration with the prospective users, carry out pilot projects with the aim of building awareness among the parties. This work relates to the following areas:

Structured health records For a number of years, the Department of Gynaecology and Obstetrics at Örebro University Hospital has been using a structured patient record and has developed well-planned internal documentation procedures. The clinic has for example produced structured surgery reports, which all the relevant staff categories use for their documentation. The aim of the collaboration is to use SNOMED CT as a terminology base for the structured patient record. The ideas behind the structured documentation of the Department of Gynaecology and Obstetrics will be made available to more clinics at the University Hospital. In March 2011, representatives of the Department of Gynaecology and Obstetrics and the National Board of Health and Welfare will start joint mapping initiatives. The result of this work will form the basis for the national reference set of gynaecology terminology from SNOMED CT. The collaboration with Örebro University Hospital also means that all methods used in stage 1 are tested.

Quality registries Uppsala Clinical Research Centre (UCR) is one of five centres of excellence for quality registries in Sweden. UCR has been given responsibility for developing the IT applications necessary for the operation of the proposed quality registry for accident and emergency departments. At a meeting between representatives of the registry, UCR and the National Board of Health and Welfare it was determined that the bulk of the contents of the registry should be represented by SNOMED CT. The collaboration is set to continue during the spring of 2011. Preliminary discussions have also been held with UCR regarding a possible link between SNOMED CT and the content of the prenatal care quality registry.

56

The National Board of Health and Welfare has established collaboration with the quality registry group of SALAR. A working group with representatives of the quality registries within primary care has been tasked with trying to agree on the description and coding for a number of common areas. This relates to reaching an agreement about the content formats and also that the registries have a common approach towards information content in areas such as smoking. When the working group has reached an agreement, representatives of the National Board of Health and Welfare are to investigate the prerequisites for linking the content to SNOMED CT. This will provide the basis for a subsequent introduction of SNOMED CT in the primary documentation.

National guidelines The national guidelines for disease prevention methods were published in a preliminary version in autumn 2010. A final version will be published in autumn 2011. In autumn 2010, Region Skåne contacted the unit for terminology, classifications and informatics at the National Board of Health and Welfare to discuss whether the indicators recommended in the guidelines can be linked to SNOMED CT. This in turn led to collaboration within the National Board of Health and Welfare. The content of the collaboration has still not been fully clarified but the intention is to investigate whether the guidelines can be supplemented with descriptions of how primary information on lifestyle will be collected in a standardized way, to be used subsequently for follow-up.

Municipal activities The National Board of Health and Welfare has established collaboration with the 13 municipalities in the region of Östergötland. The collaboration includes the application of the content and structure of ICF to build structured documentation for the municipal health care and the social services. An important part of this work is to ensure that users mean the same thing when using the same concepts and terms.

Professional perspectives A consistent and clear terminology for the field of health and social care requires that the language of professional organizations is uniform wherever possible. The aim is to further develop the method for the identification and analysis of information content. A proposal for this method was developed in a preliminary study that was conducted together with a number of professional organizations. The method should make it easier for the various professions to find similarities and differences in their use of concepts and terms, to enable the coordination of information content based on the needs of different operational areas. It is proposed that the National Board of Health and Welfare is commissioned, in cooperation with the professional organizations, to further develop and test the method. It is also proposed that the National Board of Health and Welfare together with the professional organizations is commissioned with investigating the responsibility for reference sets from SNOMED CT. The professional organizations lack the resources to take responsibility 57

for the reference sets without financial support. Government grants should be able to resolve this issue. This matter should also be investigated.

58

Resources for administration and further development The commission An Interdisciplinary Terminology for Health and Social Care will, just like the National Information Structure commission, shift from being project-based to a sustainable organization for administration and provision of the project results, as well as further development and quality assurance, coordinated with the existing activities. The methods will be developed in order to be integrated into the new knowledge area of the National Board of Health and Welfare's work on knowledge management, statistics, monitoring and supervision. The use of the project results within health care and social care services should be regulated. Support and incentives to potential users must be given. The strategic and overall national coordination and management of the ongoing commission shall be established. In order to encourage the implementation and use within health and social care services, it is proposed that the Government allocate special funds that can be distributed, after reviews, for local implementation and development work in the coming years, such as through Government grants. This chapter primarily includes the expected resource requirements for the administration and further development of SNOMED CT. The starting point is that the administration of other sources for the interdisciplinary terminology, i.e. the terminology database, health-related classifications and other coding systems are in place. Upon completion of the commission in March 2011, a number of staff from the National Board of Health and Welfare shall have the knowledge necessary to cope with about half of the tasks of the administration organization. There is a recruitment plan that can come into force when the commission for further work and funding is secured. To clarify the tasks within the administration’s organization, these are reported under the heading Basic Staffing of the administration organization. The relative lack of qualified skills in sufficient quantity was singled out early as a risk for the continuation of the work as it gives rise to vulnerability. Training, recruitment and skills development issues should be given high priority in the short-term. Described below are the resource needs identified by the National Board of Health and Welfare for the administration and continued development during the period 2011–2014.

59

Basic Staffing of the administration organization Administrative responsibility The administration responsibilities include coordinating the National Board of Health and Welfare's management of SNOMED CT, the quality assurance process and the development of support routines. There should also be a person designated to be in charge of the administration and a team that takes collective responsibility for planning, collaboration, work with and within IHTSDO, managing licences and agreements, communication, contacts with local administrative organizations and inquiries. The group is also responsible for developing policy documentation and procedures for coordination with other parts of the National Board of Health and Welfare and with other agencies and organizations whenever quality assurance of the interdisciplinary terminology is required. Responsibility for the coordination and implementation of internal and external training may also at a later stage be placed with the group. Resource requirement: 3 positions 2011, 4 positions 2012–2014.

Translation of SNOMED CT The administration task includes performing translations between English and Swedish, to prepare matters for the editorial board and to interact within the National Board of Health and Welfare and with the professional organizations. The area of responsibility includes the translation, linguistic guidelines, editorial board decisions and documentation of medical terminology in writing. Resource requirement: 1 position 2011–2014.

Mapping of terminologies and classifications to SNOMED CT The administration task includes the provision of methods and routines for mapping that ensure the quality of the interdisciplinary terminology and providing knowledge support for the mapping process at both regional and local levels. The National Board of Health and Welfare is responsible for providing the approved mapping results. The collaboration takes place with specialists from various fields and operational areas of health and social care services. The area of responsibility is the method for mapping and the published mapping results. Resource requirement: 3.5 positions 2011–2012, 2 positions 2013– 2014.

Modelling of concepts in SNOMED CT The administration task includes modelling Swedish concepts in SNOMED CT SE as well as participating in and contributing to the modelling work for the international version. The collaboration takes place with experts from specialist areas and operational areas within health and social care services. The area of responsibility is the method for model-

60

ling and documentation of the methodology and modelling results which are added to SNOMED CT SE and SNOMED CT INT. Resource requirement: 2.5 positions 2011–2012, 4 positions 2013– 2014.

Reference sets The administration task includes working with experts within a speciality or an operational area to create defined reference sets from SNOMED CT for use within a speciality or a field of activity. The collaboration takes place with specialists and experts within specialist areas and subject and operational areas within health and social care services. The area of responsibility is the method for managing reference sets and documentation of reference sets. Resource requirement: 0.5 position 2011–2014.

Terminology binding The administration task includes applying and further developing the methodology for terminology binding, i.e., the linking of concepts to the information models. Collaboration takes place within the National Board of Health and Welfare, with persons in charge of the information models at CeHis and international experts. The area of responsibility includes the methods and decisions in principle for terminology binding. Resource requirement: 0.5 position 2011–2014. If the work is also to include the application of the method based on information models, this will require another 1 to 1.5 positions from 2012 on.

Content administration of SNOMED CT The administration task includes receiving and handling incoming requests for the content of the Swedish version of SNOMED CT (SNOMED CT SE) and other distributed products such as reference sets, mapping tables, technical documentation and user manuals and information about the distribution process related to each release. It also includes responsibility for handling the process of updating content in Sweden, as well as towards the IHTSDO for the international version of SNOMED CT. The collaboration takes place with users and licensees in Sweden. The area of responsibility is the release updates of SNOMED CT SE. Resource requirement: 1 position 2011–2013, 1.5 positions 2014. If the function is to be extended to include the administration responsibility for the National Board of Health and Welfare's national reference sets the staffing must be increased gradually, depending on the extent and amount of reference sets.

Development responsibility and support for tools The area of responsibility is the ongoing operation, technical support and further development of the National Board of Health and Welfare's tools including IHTSDO Workbench. Responsibility also constitutes the distribution services for SNOMED CT and other parts of the interdiscipli61

nary terminology. Collaboration takes place with the IT department of the National Board of Health and Welfare and with IHTSDO. Resource requirement: 1 position 2011; 1 position 2012–2014.

Communication and web The task of communicating the content and use of the interdisciplinary terminology includes maintaining continuous contact with target audiences through the web and other media. Resource requirement: 1 position 2011–2014.

Summary of proposed basic staffing in the administrative organization Table 2. Summary of estimated basic staffing of the various functions of the administration organization of SNOMED CT 2011–2014, expressed in number of full-time employees. 2011

2012

2013

2014

Administrative responsibility

3.0

4.0

4.0

4.0

Translation of SNOMED CT

1.0

1.0

1.0

1.0

Mapping of terminologies and classifications to SNOMED CT Modelling of concepts in SNOMED CT

3.5

3.5

2.0

2.0

2.5

2.5

4.0

4.0

Reference sets

0.5

0.5

0.5

0.5

Terminology binding

0.5

0.5

0.5

0.5

Content administration of SNOMED CT

1.0

1.0

1.0

1.5

Development responsibility and support for tools Communication and web

1.5

1.0

1.0

1.0

1.0

1.0

1.0

1.0

14.5

15.0

15.0

15.5

Total

62

Costs for administration and development

The aim of this section is to provide a realistic picture of the extent of the basic operations for the foreseeable future as well as to show the different possibilities for accelerating the implementation and use of the interdisciplinary terminology. The costs are difficult to estimate beyond 2012. This has partly to do with the desired pace of implementation. Developments within IHTSDO over the next few years will also affect the administrative costs of the National Board of Health and Welfare's commission. In any case, by the Ministry of Health and Social Affairs’ representation in the IHTSDO General Assembly there are opportunities for monitoring and influencing this development. A specification of estimated costs is presented in Table 3. Comments on the table headers are presented under the table. Table 3. Estimated costs for the management of the interdisciplinary terminology and proposals for development work and specific measures 2011–2014 (SEK 1000) 2011

2012

2013

2014

Total 2011–2014

13,500

14,000

14,200

15,000

56,700

12,000

18,200

10,000

8,200

48,400

25,500

32,200

24,200

23,200

105,100

Development work Common information structure for social services Needs of the elderly, related actions and procedures

1,500

2,500

2,500

2,500

9,000

4,700

6,500

4,800

4,800

20,800

External experts

1,000

1,000

500

500

3,000

Support group for users and pilots Collaboration for the common information structure

1,500

5,000

5,000

5,000

16,500

2,000

2,000

2,000

2,000

8,000

500

1,500

5,500

2,500

10,000

11,200

18,500

20,300

17,300

67,300

400

0

0

0

400

Coordination of applied coding systems

0

200

200

0

400

Dental terminology

0

750

750

0

1,500

400

950

950

0

2,300

0

5,000

5,000

5,000

15,000

37,100

56,650

50,450

45,500

189,700

Administrative organization Staff costs

1)

Other costs Total

Initial training measures Total Investigation of new areas Responsibility for laboratory medicine terminology

Total Incentive grants for implementation TOTAL 1)

Estimated salary costs, including an annual salary increase of 2 per cent 2012–2014 and the administrative surcharge (overhead) of 20 per cent.

63

Administration organization Basic staffing of the administration Cost for estimated basic staffing corresponding to Table 2.

Other administrative costs The administration requires specially developed tools for the administration of SNOMED CT. The cost of tools and the adaptation of technology support and development of these constitute a large proportion of the administrative costs. During a transitional period, it may be necessary to test and develop different tools. Furthermore, tools are also needed to manage user licences and service for the distribution of the interdisciplinary terminology. Additional administrative costs also include information initiatives, skills development, management of the preparatory and decision-making organization, user licences, corporate law expertise, translation, quality reviewers for the translation, external specialists, participation in international forums e.g., WHO and IHTSDO and the annual membership fee to IHTSDO.

Development work Common information structure for the social services This work is linked to SALAR's commission in the same area and is a collaboration between the National Board of Health and Welfare and SALAR. In 2011, an operational description will be concluded that includes process, work flow and information models as well as the concepts, terms and classifications used and needed within the social services. The operational description should provide the National Board of Health and Welfare with a foundation for the future development of the national information structure with regard to the activities of the social services. It is proposed that the National Board of Health and Welfare be awarded a specific commission for the continuation of the work.

Needs of the elderly and related actions and procedures These two initiatives are linked to commissions within the National Board of Health and Welfare. Persons from the administration and development of the interdisciplinary terminology contribute to the implementation of the commission. The work will result in the continued administration of reference sets of concepts and terms from SNOMED CT as well as for classifications for the documentation on local levels, and subsets for national statistics. Resource requirements for the continued work consist of both persons with knowledge of the interdisciplinary terminology and support initiatives for the training and implementation of the presented documentation model. The planned continuation of the work includes proposals for implementation programmes that cover the training of approx. 300 instructors in the municipalities and with private care providers for three years. The goal is for the collation of the national statistics to be in force from 2014. The implementation costs of the training 64

are not included in the specification, but are estimated at SEK 3M per year, plus additional related personal resources, from 2012 to 2014.

External experts Access to specific skills that are relevant for the implementation of the interdisciplinary terminology and its application in the common information structure are critical for achieving the objectives of the national strategy for eHealth. A particularly important area for further development is terminology binding. In Sweden, there is not sufficient expertise within this area; therefore there is a need to engage international experts. Key development projects must be budgeted and staffed separately.

Support group for users and pilot projects In order for the interdisciplinary terminology to be utilized, the National Board of Health and Welfare needs to support and encourage its introduction and use. It is proposed that the National Board of Health and Welfare is commissioned, in collaboration with the prospective users, with the task of carrying out pilot projects with the aim of building awareness among the parties.

Collaboration for the common information structure The National Board of Health and Welfare believes that collaboration with SALAR and CeHis is essential for the realization of the common information structure. There is, for example, a need to develop a general and scheduled implementation plan that includes the interdisciplinary terminology as well as other parts of the common information structure and its applications on a national level. It is proposed that the National Board of Health and Welfare be commissioned, in collaboration with CeHis and SALAR, to develop a plan for the continued development, impact analysis, implementation and administration of the common information structure.

Initial training measures The National Board of Health and Welfare has knowledge of the interdisciplinary terminology content and use that no other organization has at present, and over a limited period of time the Board should therefore be responsible for the knowledge transfer. This requires resources for specific initiatives in the coming years to develop educational materials and to coordinate the training of instructors in the various elements of the interdisciplinary terminology. Initially, existing skills must be allocated to this work, which will need to be compensated.

Investigation of new areas Responsibility for laboratory medicine terminology There is no designated national standard terminology within the field of laboratory medicine and its use is not regulated. The National Board of Health and Welfare currently has no commission or resources for this 65

area. It is proposed that the National Board of Health and Welfare is commissioned, in cooperation with SALAR and the current Swedish administrator of the laboratory terminology NPU, to deliberate and issue proposals for the long-term administration and financing of this project on a national level. Furthermore, the National Board of Health and Welfare should be commissioned with the task of investigating the forms of national regulation and recommendations regarding the use of laboratory medicine terminology as part of the interdisciplinary terminology.

Investigation of the coordination of applied coding systems. It is proposed that the National Board of Health and Welfare is commissioned with the task to investigate the possibilities of coordinating and organizing the national quality assurance of the administrative and statistical coding systems and concepts and terms that are central to, for example, operational descriptions, statistics and monitoring within health and social care services. The study will also highlight the responsibility for the quality assurance of coding systems and related guidelines and provide suggestions for a coordinated approach between the relevant agencies and organizations.

Dental terminology

It is important for dental concepts and terms to be based on SNOMED CT. It is proposed that the National Board of Health and Welfare is commissioned to investigate the need for a uniform dental care terminology related to SNOMED CT.

Incentive grants for implementation

The National Board of Health and Welfare believes that national incentives for the introduction of the interdisciplinary terminology are needed in the municipalities, counties and regions. The National Board of Health and Welfare also believes that the professional organizations should be allowed to apply for incentive grants to encourage active involvement in quality assurance and to develop the reference sets of SNOMED CT for use in health and social care documentation.

66

Factual reports The list below shows the factual reports related to the final reporting. • Methods of the Interdisciplinary Terminology for Health and Social Care. This report describes the methods developed within the framework of the commission and describes how they relate to each other.9 • Management and Administration of SNOMED CT as a Part of an Interdisciplinary Terminology for Health and Social Care. This report describes the objects to be administered by the National Board of Health and Welfare and the prerequisites in the form of requirements of skills and resources. The administration report also describes the technical configuration, planned support for users, licence management, and processes for maintenance, translation, reference sets and mapping results. The report also takes up the issue of tools that have been identified for the administration of SNOMED CT. • Realization of the Government Commission An Interdisciplinary Terminology for Health and Social Care. This report includes a description of the project's cost, the personnel involved and the communication initiatives. The report also describes the related risks during the project as well as the sub-projects and their realization.

9

The report describing the methods of the interdisciplinary terminology is not available in English.

67

References 1. Nationell IT-strategi för vård och omsorg. Regeringens skrivelse 2005/06: 139; 2006-03-16. 2. Uppdrag angående en nationell informationsstruktur och en nationell terminologi- och klassifikationsresurs för hälso- och sjukvården. Regeringsbeslut 3. Socialdepartementet; 2007-05-16. 3. Nationell Informationsstruktur – ett regeringsuppdrag inom Nationell IT-strategi för vård och omsorg. Stockholm: Socialstyrelsen; 2010. 4. Nationell terminologi- och klassifikationsresurs med Snomed CT – Projektplan. Socialstyrelsen; dnr 00-6163/2007. 5. IHTSDO Strategic Directions to 2015. Downloaded 2011-03-08 from http://www.ihtsdo.org/about-ihtsdo/strategic-directions/. 6. Språkliga riktlinjer för översättningen av SNOMED CT till svenska. Stockholm: Socialstyrelsen; 2011. 7. Dagmaröverenskommelse 2008. Stockholm: Sveriges Kommuner och Landsting; 2008. 8. Tillämpat fackspråk i standardvårdplaner, slutrapport. Ett samverkansprojekt mellan Sveriges Kommuner och Landsting, Skånes universitetssjukhus, Akademiska sjukhuset i Uppsala och Lasarettet i Enköping; 2010. 9. Tillämpat gemensamt fackspråk över huvudmannagränser. Förstudierapport. Sveriges Kommuner och Landsting; 2009. 10. Utbildningsmaterial för ICF. Stockholm: Socialstyrelsen; 2011. 11. IHTSDO. SNOMED Clinical Terms® User Guide – January 2010 International Release (US English). 12. IFK2 – del 2. Gemensam utveckling av informationshantering för Nationella Kvalitetsregister. Stockholm: Center för eHälsa i samverkan; 2010. 13. Mappning av kvalitetsregistret RiksSvikt. Stockholm: Socialstyrelsen; 2010. 14. Översyn av de nationella kvalitetsregistren. Guldgruvan i hälsooch sjukvården. Förslag till gemensam satsning 2011-2015. Stockholm: Socialdepartementet och Sveriges Kommuner och Landsting; 2010 15. Infektionsverktyget. Center för eHälsa i samverkan. Downloaded 2011-03-09 from http://www.cehis.se/vardtjanster/infektionsverktyget/. 16. Slutrapport Förstudie om ordinationsorsak – etapp 1. Stockholm: Center för eHälsa i samverkan; 2011. Downloaded 2011-03-10 From http://nepi.net/110208-Foerstudie-ordinationsorsak.htm. 17. Slutrapport från terminologibindningsprojektet. Stockholm: Socialstyrelsen; 2011.

68

18. Begreppsrelationen i NI och Socialstyrelsens termbank. Stockholm: Socialstyrelsen; under utgivning 2011-05. 19. Vem använder ICF och på vilket sätt? Socialstyrelsen; under utgivning 2011-04. 20. Nationell modell för att beskriva behov och insatser inom äldreomsorgen med nationellt fackspråk - Beskrivning av utvecklingsarbetet. Stockholm: Socialstyrelsen; under utgivning 201104. 21. Nationellt fackspråk för vård och omsorg. Slutrapport för delprojektet Gemensamt språk. Stockholm: Socialstyrelsen; 2011. 22. Kodning av funktionstillstånd vid rehabilitering inom sluten vård- för användning med NordDRG från och med 2011. Vägledning. Stockholm: Socialstyrelsen, 2011. 23. Mappning mellan KMÅ och SNOMED CT – slutrapport. Stockholm: Socialstyrelsen; under utgivning 2011-05. 24. Terminologiarbete och begreppsmodellering. – två metoder. Stockholm: Socialstyrelsen; under utgivning 2011-09. 25. Samverkan kring det nationella fackspråket för vård och omsorg. Stockholm: Socialstyrelsen; 2011. 26. Ett nationellt substansregister för läkemedel. Stockholm: Programstyrgruppen för nationella IT-stöd inom läkemedelsområdet; 2010. 27. Uppdrag att utreda frågan om inrättandet av ett nationellt substansregister samt utbetalning av medel. Regeringsbeslut 1:3. Socialdepartementet; 2010-12-02. 28. Omvårdnadsdiagnoser enligt NANDA: definitioner och klassifikation 2009–2011, NANDA International, Studentlitteratur januari 2011. 29. Medicinskt fackspråk i skrift – Råd och riktlinjer. Stockholm: Läkartidningen, Socialstyrelsen, Svenska Läkaresällskapet, Terminologicentrum TNC; 2010. 30. Utveckling av ersättningssystem inom hälso- och sjukvården. Stockholm: Socialstyrelsen och Sveriges Kommuner och Landsting; 2010. 31. Läkartidningen. Snomed CT kan ge vårdens journalsystem gemensam röst. Downloaded 2011-02-18 from http://www.lakartidningen.se/07engine.php?articleId=13976. 32. Barnhälsodataprojektet – utveckling av gemensamt språk [preliminär titel]. Stockholm: Socialstyrelsen; under utgivning 201108. 33. Vårdplanering i samband med utskrivning från sluten vård - Utveckling av gemensamt språk [preliminär titel]. Stockholm: Socialstyrelsen; under utgivning 2011-08. 34. Kokkinakis D, Gerdin U. Läkartidningens arkiv i ny skepnad – En resurs för forskare, läkare och allmänhet. Språkbruk 1/2010. s. 22-23. 35. Results of Survey to Gather the Use, Benefits and Tools of SNOMED CT. Downloaded 2011-01-26 from http://www.ihtsdo.org. 69

36. Medicare and Medicaid Programs; Electronic Health Record Incentive Program; Final Rule. 42 CFR Parts 412, 413, 422, and 495 Federal Register / Vol. 75, No. 144 / Wednesday, July 28, 2010 / Rules and Regulations. 37. Health Information Technology: Initial Set of Standards, Implementation Specifications, and Certification Criteria for Electronic Health Record Technology. 45 CFR Part 170. Federal Register / Vol. 75, No. 144 / Wednesday, July 28, 2010 / Rules and Regulations 38. Dolin RH, Mattison JE, Cohn S, Campbell KE, Wiesenthal AM, Hochhalter B, et al. Kaiser Permanentes Convergent Medical Terminology. Stud Health Technol Inform. 2004;107(Pt 1):346-350. 39. Canada Health Infoway. SNOMED CT in use. 40. Osornio AL, Luna D, Gambarte ML, Gomez A, Reynoso G, de Quirós FG. Creation of a local interface terminology to SNOMED CT. Stud Health Technol Inform. 2007;129(Pt 1):765-9. 41. Experiences from a Large scale Implementation of SNOMED CT in Argentina. Downloaded 2011-03-22 from http://www.ihtsdo.org/publications/implementing-snomedct/implementation-experience/ 42. Health Information Technology: Initial Set of Standards, Implementation Specifications, and Certification Criteria for Electronic Health Record Technology. 45 CFR Part 170. Federal Register / Vol. 75, No. 144 / Wednesday, July 28, 2010 / Rules and Regulations. 43. The CORE Problem List Subset of SNOMED CT. U.S. National Library of Medicine 2011. 44. Cornet R, de Keizer N. Forty years of SNOMED: a literature review. BMC Medical Informatics and Decision Making 2008, 8(Suppl 1):S2. 45. Bodenreider O. Biomedical ontologies in action: role in knowledge management, data integration and decision support. Yearbook Medical Informatics. 2008: s. 67-79.

70

Appendix 1

SNOMED CT in other countries Background A recurring question is the extent to which SNOMED CT is used in other countries. Although there is literature on the content of SNOMED CT, it is more difficult to find articles about how SNOMED CT is used in practice. The IHTSDO operational plan for the next few years prioritizes the issue of experiences of the introduction of SNOMED CT. This Appendix summarizes the available knowledge about how SNOMED CT is currently used. The compilation is based on various types of sources: articles, presentations and interviews with key persons. All member states conduct different types of application projects, either at pilot stage or in full operation. The greatest levels of experience are in the U.S. and Britain, but several other countries such as Australia, Singapore and Canada also run projects. There are also organizations in countries outside the IHTSDO who use SNOMED CT in various applications, for example, South Korea, Argentina, Hong Kong and Sri Lanka. Within the EU, SNOMED CT is also used in a project. See the section on Smart Open Services for European Patients under International Cooperation.

Survey on the use of SNOMED CT During 2010, IHTSDO conducted an online survey about the use of SNOMED CT [35]. The questionnaire was answered by 48 respondents from 10 countries, most of whom were representatives of the parent governmental body or software manufacturers. Just more than half the projects (29) reported in the survey were classified as proof-of-concept or pilot projects. In the survey, however, 24 projects were classified as being in the production phase. SNOMED CT was used mainly for the following purposes (in descending order): • Clinical documentation • Research • Reports to registries and national authorities for disease control • Decision support • Quality control • Information systems for laboratories • Pharmaceuticals • Radiology • Systems for financial compensation within health care

71

In the clinical documentation, SNOMED CT was used mainly for the following types of information (in descending order): • Problem lists • Discharge summaries • Care plans upon discharge • Medication lists • Hypersensitivity lists • Referrals and referral follow-ups The most commonly used hierarchies were Clinical Finding, Procedure and Body Structure. Just more than half of the respondents used reference sets. The number of reference sets used ranged from 1 till 168. The majority of respondents used the national or local versions of SNOMED CT.

Examples of the use of SNOMED CT U.S. Health and Human Services The U.S. Congress has passed a series of laws within the health care sector. The federal health care should be accessible to more persons than it has been previously, in parallel with the aspirations to improve quality, increase security and enhance the efficiency of health care in the U.S. Despite the high technological level in the U.S., the use of IT in health care is lower than in Sweden. On 9 July 2010, Kathleen Sebelius, Secretary of the Department of Health and Human Services (HHS), signed a number of provisions aimed at promoting the use of information technology and the exchange of electronic information between health care providers [36] [37]. Extremely detailed provisions on approved standards, specifications for the introduction and criteria for certification have been combined with financial incentives in Medicare and Medicaid. The institutions that meet the certification criteria are eligible for grants. Just more than twenty certification criteria have been specified in order for complete electronic health records to be achieved. The records shall, for example, contain the problem list, medication list, interaction control, ability to calculate BMI, and structured electronic data on smoking and vaccinations, etc. Standards have been linked to these functions. As a rule, not one single standard has been selected even if the goal is to reduce the number of standards in the future. SNOMED CT has been selected as standard terminology for two areas: the problem list and the medication list. In the case of problem lists, SNOMED CT is standard along with ICD-9-CM, and for the medication lists SNOMED CT is one of eleven permitted standards.

Kaiser Permanente Kaiser Permanente (KP), a large health care organization in the U.S. with approximately 8 million patients, operates a comprehensive terminology solution called Convergent Medical Terminology (CMT) [38]. 72

CMT contains SNOMED CT as an important component, but it also contains other terminologies such as LOINC and an American pharmaceutical terminology. Furthermore, CMT also contains new concepts created by KP based on the needs of the organization. CMT also allows local terms to be used by linking the terms in an interface terminology to CMT as synonyms of the existing concepts. Kaiser Permanente has recently offered IHTSDO the rights to CMT.

Canada Health Infoway Canada Health Infoway (CHI) is a publicly funded organization that drives the development of IT support for health care, in particular for electronic health records. CHI is responsible for Canada's membership and participation in IHTSDO. CHI has specified a number of projects in which SNOMED CT is used [39].

Hospital Italiano, Buenos Aires Hospital Italiano (HI) in Buenos Aires in Argentina is a university in which SNOMED CT is the basis for the coding of patient data [40] [41]. A list of local terms is used, as interface terminology, where each term is linked to either an existing SNOMED CT concept as a synonym or to a new concept in a SNOMED CT extension. The terms in the interface terminology originate from previous work on terminology standardization. The existing possibilities for extending SNOMED CT are used. Initially, the new terminology was used for coding diagnoses and procedures for discharge summaries. The reference sets from SNOMED CT are used to define, for example, the terms presented in different units of a given concept, as well as to define what concepts should be used in a given context. Thus, there are reference sets for diagnostics, procedures, etc. as well as for some medical specialities. Coded patient data is then used to monitor, and approx. 1,200 reference sets for follow-up have been created so far. Mapping from SNOMED CT to ICD-9-CM and DRG has been done, and the results are used for statistics and in compensation systems. Hospital Italiano uses HL7 CDA for the transfer of information. Standardization of data models has not been implemented to any significant extent.

Types of application Problem list A problem list is a current list of a patient's health problems or other health related conditions. SNOMED CT is used to code the problem lists for many applications. E.g., in the U.S., the Department of Health and Human Services certified SNOMED CT (as an alternative to ICD-9-CM) for coding problems in the problem lists within the Governmental programme for “Meaningful use of Electronic Health Records” [42]. The problem list also constitutes a large part of the application of SNOMED CT at the Hospital Italiano in Buenos Aires. 73

The National Library of Medicine (NLM) has specified a subset of SNOMED CT, NLM Core Problem List Subset, for this very purpose [43]. This list of concepts is made up of the most common concepts occurring in the problem lists from seven organizations: Beth Israel Deaconess Medical Centre, Intermountain Healthcare, Kaiser Permanente, Mayo Clinic, Nebraska University Medical Centre, Regenstrief Institute and Hong Kong Hospital Authority. The concepts in the list have been mapped to SNOMED CT. The SNOMED CT concepts used are primarily retrieved from the hierarchies Clinical Finding, Procedure, Situation with explicit context and Event. In the standardized problem lists, SNOMED CT is primarily used as reference terminology in order to reduce variability in the coding of health problems.

Follow-up

Using SNOMED CT for the follow-up primarily means that the patient data is encoded with SNOMED CT and secondly that the coded data is analyzed. If required, the analysis is supported by the structure of SNOMED CT. Within Kaiser Permanente, a set of data is encoded using SNOMED CT, including diagnoses. Patients can then be selected based on the SNOMED CT concepts. In this way, patient cohorts can be created for quality assurance. To select all patients who have, a pulmonary disease caused by Mycobacteria (e.g. pulmonary tuberculosis), a search is done for all patients who have a diagnostic code with the following criteria: (1) disease caused by (2) Mycobacteria (3) in lung. Under the corresponding concept in SNOMED CT there are 27 more specific concepts. If instead of using SNOMED CT you searched for diagnosis codes in accordance with ICD-10, you would need to look in five different chapters and several sub-chapters.

Decision support The term “decision support” has no uniform usage, which makes it difficult to determine whether SNOMED CT should be used in decision support systems. If the meaning is defined to include systems designed to manage the clinical process by providing advice or feedback, no references are found in either Medline or Google Scholar, which describes the actual use of SNOMED CT in the decision support system. In a review of the literature describing SNOMED CT from 2008, Cornet and Keizer write that there is no indication that SNOMED CT is used for direct patient care, such as decision support [44]. Therefore, the SNOMED CT usage for decision support is probably limited. Kaiser Permanente is using SNOMED CT for a simple form of decision support: to search for patients who require follow-ups and that would otherwise have been missed. The technique used is similar to that used in the follow-up process.

74

The fact that the use of SNOMED CT in the decision support system is limited in the current situation can probably be explained by the use of decision support systems in general being very limited. However, one can conclude, based on theoretical reasoning, that the type of knowledge that is represented in SNOMED CT, i.e. how concepts relate to each other, is an important part of a decision support system [45].

Use of different SNOMED CT features SNOMED CT has essentially two general features that are used in applications: to serve as a reference terminology and to support aggregation.

Reference terminology Using SNOMED CT as reference terminology means, in this context, that the SNOMED CT codes are used to drive standardization, particularly within communication. SNOMED CT codes are used either directly in the EHR systems or by mapping from an interface terminology or other existing terminology. If the SNOMED CT codes are common to all communicating parties, i.e., if they function as points of reference, semantic interoperability can be achieved. Canada Health Infoway describes a number of current Canadian projects in which SNOMED CT is used. For example, in Nova Scotia, SNOMED CT is used as a reference terminology for the reporting of surgical procedures. Different coding systems for surgical procedures are used in various organizations and these coding systems are mapped to SNOMED CT. Reporting to the provincial level and the compiling of the specifications are done using SNOMED CT codes.

Aggregation

SNOMED CT uses the concept definitions to build a hierarchy10. This hierarchy can be used to compare concepts. If patient data is encoded with SNOMED CT, the hierarchy can be used for aggregation, i.e., to determine whether the SNOMED CT codes fall within a certain search concept.

10 It is often referred to that SNOMED CT consists of 19 hierarchies, however these19 hierarchies have a common parent concept and all concepts can therefore be deemed as being included in the same individual hierarchy.

75

This option is used in several applications, including Kaiser Permanente's application as described above. The definitions of Pulmonary disease due to Mycobacteria and Pulmonary tuberculosis are used to place the concepts in the right place in the hierarchy.

Series of seminars on implementation Within IHTSDO, the Implementation Special Interest Group works to identify existing applications in which SNOMED CT is used in operation in different parts of the world. Since spring 2010, the group runs a series of seminars in which these applications are presented and where anyone can participate. The presentations are also available at the following website: http://www.ihtsdo.org/publications/implementing-snomedct/implementation-experience/

76