Integrated information infrastructure for health care: case studies from Denmark and Norway Tina Blegind Jensen, Aarhus School of Business Margunn Aanestad, University of Oslo
2 Background A fully integrated information infrastructure for health care is the objective for most governments and health care providers: Significant resources are directed to the introduction of Electronic Patient Record (EPR) systems on a wide scale Standardization initiatives to achieve interoperability between EPR systems Health authorities in Denmark and Norway have attempted to achieve interoperability through EPR standardization processes: The conditions for achieving interoperability and standardization seem favourable in both countries Both countries have aimed at standardization initiatives Neither Denmark nor Norway has managed to achieve standardization of EPRs as planned
3 Purpose The purpose of our study: To study the challenges in organizing and co-ordinating complex, widely distributed, and long-term national standardization efforts To critically examine the anatomy of ambitions To define strategies that specify small and manageable initiatives to be extended and built on Denmark and Norway as case studies: The Basic Structure for EPR (B-EPR) initiative in Denmark The development of an EPR standard in Norway
4 Theoretical underpinnings Information infrastructures: Extend single information systems; collections of interconnected systems Socio-technical in nature: practices, technologies, regulations, etc. Not designed from scratch; growing over time in planned and unplanned manner Standardization and complexity: The vision of interoperable EPR systems spurs the need for standardization of data formats and information models The development of work practices and communication modes in relation to an EPR standard may differ across contexts Need to accommodate local use patterns while maintaining standardization and interoperability
5 Framework: Three dimensions of complexity Framework: Three dimensions of complexity in information infrastructures
6 Denmark and Norway as case studies Denmark and Norway are similar in many respects: Free public healthcare services to relatively small populations Healthcare systems are highly centralized and government controlled The responsibility for everyday operation of healthcare services is divided between regions and municipalities The governmental healthcare expenditure in both countries is high Over the last decade the governments have introduced significant digitization initiatives (EPR systems) Attempts to build standardized and interoperable national healthcare infrastructure have met difficulties and unanticipated problems
7 Data sources Data sources Denmark Norway National digitization strategies - Plan of Action for Electronic Patient Records, Danish Ministry of Health 1996 - National Strategy for IT in Healthcare 2000-2002, Ministry of the Interior and Health 1999 - National IT Strategy 2003-2007 for the Danish Healthcare Service, Ministry of the Interior and Health 2003 - National Strategy for IT in healthcare 2008-2012, Digital Health 2007 Action plans from the Norwegian Ministry of Health: - More Health for every bit (1997-2000) - Say @!, (2001-2003) 2003) - Te@mwork 2007 (2004-2007) - Teamwork 2.0 (2008-2013) Project report on EPR strategy, Directorate of Social Services and Health, 2005 (SHDIR 2005) Regulations - The Economy of Counties 2005, Economy Agreement - Requirement specifications EPR (KITH 1998) (legislation, between the Government and the Association of County - EPR standard: Architecture, archiving and access control (KITH financial Councils 2004 2001) arrangements, - Principles for Standardization and Diffusion of EPRs, standards) - EPR standard, (revised version of 2001 standard) (KITH 2007) Ministry of Health, National Board of Health, County Council, and H:S 2002 - Basic standard for EPR, Circular IS 1/2002 from the.directorate of Social Services and Healt, 2002. Evaluation - EHR Observatory status reports from 2000-2006 - Evaluation of EPR vendors standards compliance (KITH 2004) studies - Evaluation reports of B-EPR implementations - Office of the Auditor General s report on ICT in hospitals and - Deloitte report 2007 electronic collaboration in the healthcare sector (RR 2008) Public debate - Radio broadcast July 2008 - Comments from public hearing of EPR standard (KITH 2000) - Debates in: The Journal of the Danish Medical Association, Daily Medicine, Danish Nurses Organization, Computer World - Websites: Digital Health, Ministry of Health and Prevention, Danish Nurses Organization Electronic Health Record Observatory conferences (attended in 2003, 2005, and 2006) - Workshop on Reform, Management and Organizational Processes in Healthcare, 2004 - Scandinavian Conference on Health Informatics, 2005 - Various articles in Computerworld, Digi, Daily Medicine, Journal of the Norwegian Medical Association - Websites of central actors Conferences, - Electronic Health Record Observatory conferences -Tromsø Telemedicine and ehealth conference (attended in 1999 and 2003) seminars, workshops, - Health Informatics Conference in (attended in 2007 and 2008) meetings -1 st National Seminar for Research on Management and Organization of the Healthcare Sector, October 2004
8 Denmark s B-EPR initiative Plan of action for EPRs in 1996: promote, stimulate, and coordinate the development of EPRs in Danish hospitals In 2003: B-EPR project to create the foundation for the coordinated development and implementation of EPRs based on the national standard. Purpose: to ensure a common structure for communication among [EPR] systems and between [EPR] systems and other information systems in the healthcare service Process and problem-oriented solving process : Diagnostic consideration Planning Execution Evaluation Built on structured data and reporting to national clinical databases
9 Denmark s B-EPR initiative 2003-2007: a number of pilot projects initiated to test and evaluate the B-EPR model in practice (GEPKA projects) Hospitals in seven counties participated Evaluation reports showed that a common structure for EPR systems was challenging Not easily transferable to a clinical setting; would require substantial changes in clinical practices Information was too fragmented and not well-structured, leading to poor user interfaces Difficulties for two EPR systems built upon the B-EPR structure to exchange data: What data to be communicated? What rules for security issues and consent? Which technical standards to be used? Etc.
10 Denmark s B-EPR initiative learning Functional span: - Problem-oriented documentation and cross-disciplinary - The need for structured clinical terminology - Revised: electronic medicine card and national patient index Temporal reach: - Radical changes were expected within a short time frame - The ambition that all Danish hospitals should have EPR systems before 2006 was modified Geographical scope: - Define a patient record for both primary healthcare and hospital sector across the whole country - A lot of local EPR systems already existed - In steps implementation of medicine card and national patient index
11 A Norwegian EPR standard Started in 1998 pre-project project at KITH with pragmatic initial aims: The ambitions for the first version of a Norwegian EPR standard should be limited to the minimum which is required in order to waive the demand that the paper-based record should be maintained Alignment with activities of CEN/TC251 standardization of EPR s basic architecture increased aims to: 1. Establish a format for long-term storage of patient records 2. Specify mechanisms to prevent un-authorized access and allow authorized access 3. Establish a basic record architecture which gives the opportunity for a more flexible use of the record 4. Give guidelines for how standardized coding schemes and classifications shall be integrated with the EPR 5. Establish minimum requirements for functionality of an EPR system 6. Facilitate use of standardized concept frameworks in EPR systems
12 A Norwegian EPR standard CEN prenv 13606 could not be directly applied, adjusted for Norwegian legal requirements (privacy, storage) Published in 2001, X pages, abstract/generic, UML-based, with around 200 references to Norwegian law Public hearing in 2000: Users: abstract and difficult to understand Vendors: requires significant changes and costs Directorate of Health, March 2002: not mandatory standard Survey of adherence (2003/4): focus on access control and archiving, not architectural model Useful in exemplifying how the legal requirements to security aspects, access control and privacy could be met
13 Norway s EPR standard learning Functional span: - Initially short, but wide with the CEN initiative - Then reduced again a model for law compliance Temporal reach: - Initially short-term, then extended timeframe - long-term and visionary CEN initiative - Then reduced again (law compliance Then reduced again (law compliance achieved by 2004) Geographical scope: - Initially national - CEN initiative: international - Legal regulations: national scope
14 Discussion A critical look at the ambition level and associated complexity of strategies may contribute to formulating more modest targets with respect to: Geographical scope Functional span Temporal reach Goal description of an initiative needs to be connected to existing information infrastructure Minimizing complexity necessitates that changes are realized in small steps Only move along one of the dimensions at a time