2011-05-09 1(6) National Information Structure for health and social care in Sweden It is crucial that the right person has access to the right information about a patient at the right time to be able to provide safe care of high quality to each individual. To reach this goal, the information processed in health and social care has to be structured in a way that means it can be found and compiled for different purposes. Information has to be relevant, unambiguous and structured The Swedish National Strategy for ehealth was initiated by the Ministry of Health and Social Affairs in 2006. Safe, accessible health and social care of high quality, based on public need, are the cornerstones of the strategy. Ensuring an efficient information supply in health and social care is not only a matter of the technical capability of systems to operate together; it is also a matter of the quality and structure of the information. The information produced and registered about patients has to be relevant, unambiguous and structured so that it can be used by various stakeholders, for different purposes and in different parts of the health and social care processes. Information is needed to: manage the clinical process of a patient follow up clinical processes (aggregated data) manage clinical processes These three aspects of the information supply are dependent on IT solutions based on a common information structure and the use of a common interdisciplinary terminology as well as statistical classifications. This is especially important if the goal is to enable relevant information to follow the patient over time and over organizational borders, and to make it reusable in different contexts. A common national approach in this area enables the development of IT solutions that support efficient documentation, facilitate automated delivery of structured and well defined subsets of data to different registers, operate as decision support, and help to ensure access to relevant information at the point of care.
SOCIALSTYRELSEN 2011-05-09 2(6) The National Information Structure (NI) the basis for coherent information The Swedish National Board of Health and Welfare has the responsibility to develop a foundation for structured and well-defined information in health and social care. The result of this work will serve as a basis for a regulatory framework that will specify how information is to be documented and handled. An important part of this has been to develop a national information structure for health and social care (NI). NI is a comprehensive description of health and social care activities (the core process) and stakeholders' information needs. It is also a description of how the information should be structured so that it can be reused in different parts of the process, while its context is maintained. NI creates the necessary conditions to develop IT solutions supporting the processes within health and social care. NI can be used for both social care and health care activities and is based on the concept of Health as defined in the WHO definition of health 1. NI describes a common view of the process The Swedish national information structure consists of three different types of models. The basis of NI is a common view of the health and social care process, presented as a generic process model. The core concepts describing the process are clarified and defined in concept models. These two types of models (process and concept) represent the business domain, and together they make up the foundation of the information models. NI describes how the information linked to the individual and created in a care process, should be structured to be useful now as well as in the future. The information will be useful in the health and social care processes related directly to the individual, but also in the processes used to manage and follow up activities in different ways when comprehensive information is needed on an aggregated basis. It should be possible to compile and present relevant information about an individual and their way through the health and social care process, no matter where in the process the information is generated. It should also be possible to link the information to the process of one individual as well as to compilations of several processes of the same type. Structured and transparent information is needed as an input to the planning and implementation of care for individuals, for monitoring the performance and effectiveness of care activities and to optimize patient 1 Definition of Health (WHO): Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.
SOCIALSTYRELSEN 2011-05-09 3(6) safety. NI describes the type of information required to compile information in an appropriate context, for example information about: Purpose why is a blood test or an examination undertaken: as part of an investigation or a treatment? Responsible person who is responsible for prescribing, booking or performing an activity? Status is the activity prescribed, commissioned, booked, performed, dependent on other activities? Date/time for prescription, order, performance etc. It is also relevant to know when, by whom and during which part of the process the information was generated and the health problem to which it is linked. NI contains a process model that can be used as a starting point for identifying these types of data (see figure below). Basic concepts in NI The WHO definition of Health has been the starting point for the basic concepts used in NI: Health condition Health problem Health care request Health process Health process plan An individual may have multiple parallel health processes (which include one or more health problems), and therefore they have a health
SOCIALSTYRELSEN 2011-05-09 4(6) process plan which may consist of several sub-plans. For example, one health process plan could be linked to COPD (chronic obstructive pulmonary disease) and another to stroke. For all the stroke care related to the unique individual there is only one health process plan, which is the same for all professionals involved in managing and performing the care of the health problems in this health process. In order to coordinate the various health process plans of an individual, NI also provides a general concept for the plan, activity plan, which may include all activities related to an individual in various health problems. This may apply to all actors; specialist care, primary care, rehabilitation and others. A health process plan must, at any given time, have a professional actor who is responsible for coordinating this plan. The person or the professional actor who completed the plan has a special responsibility to ensure that activities are effectively executed and followed up. In NI, this responsibility is called continuity of responsibility. NI provides, along with terms and concepts from the national interdisciplinary terminology, clear identification of, for example: What are the health conditions of the individual? Which is the individual's health process (one or more)? What activities are included in the health process plan (planned, executed), and what is their status? What resources are linked to the activities? What are the benefits of using NI? Creates continuity of care If all actors involved in the individual's care process have access to relevant information and can monitor and evaluate their processes and results, health and social care will become safer and of better quality. When it is possible to get access to information from previous parts of a process and it is comprehensible what has been planned and what has been actually performed, the next actor can take over and continue the process. The intention is that the health process plan for the individual should be available to different care professionals, regardless of organizational boundaries (provided that they are qualified and involved in the care process). Facilitates documentation For example, NI can be used to develop IT applications that activate a predetermined plan of operations (standardized care plans, which can be individualized) when a specific health problem is registered.
SOCIALSTYRELSEN 2011-05-09 5(6) Allows follow-up at individual level or at health issue level NI can be used as the basis for IT support that makes it possible to monitor quality, resource consumption and deviation from established national or local guidelines. Creates empowerment for the patient (the individual) An individual who has access to adequate information has a better chance of dialogue with the health and social care provider and can take part in setting the goals and influence the outcome. Structured data also provides increased opportunities to present comparable information on various health and social care actors and their performance and quality. This supports the individual in making an informed and active decision about for example which health centre or nursing home to choose. Enables the development of knowledge management and decision support If NI forms the basis for developing national decision support solutions, it would be possible to achieve uniformity in health and social care. It then becomes possible to achieve an unbroken chain of information, from knowledge-based decision support to management of core processes on a local level and on to uniformly structured quality registers. Data from quality registers can then be analysed and the results used to make changes in the decision supports a complete improvement cycle. Improves management and governance With support from NI, risk and change management can improve. Standardized activity plans make it possible to document and monitor deviations from planned activities. This provides a basis for analysis, valuation and, if necessary, changes. IT solutions based on NI offer the potential for reuse and compilation of information for management purposes. Creates opportunities to transform businesses The generic process model of NI offers the possibilities to describe processes and activities in a consistent manner, from the perspective of the individual. This in turn provides a good basis for planning and developing a business so that it can become more process oriented. Provides a basis for procurement and development of IT support With support from NI, IT applications can be developed to support process oriented health and social care. With NI, buyers and developers
SOCIALSTYRELSEN 2011-05-09 6(6) of IT get a common basis for requirements definition and development. This makes it possible to combine IT solutions from different vendors and, ultimately, at lower costs. This should apply not only to the procurement of new IT solutions but also to the adaptation or extension of existing solutions.