Ebook: Large Scale Projects in eHealth

The Efmi STC2012 was jointly organized by the European Federation for Medical Informatics (EFMI) and the Russian Association for Medical Informatics (AMI). The overarching aim of EFMI Special Topic Conferences is to provide a forum for discussing achievements and actual experiences on specific topics in medical informatics. Being based on innovative methods and approaches, a Special Topic Conference (STC) enhances the communication among professional communities in the health informatics domain. STCs are organized in close collaboration with EFMI Working Groups.

Carrying on the series of EFMI Special Topic Conferences started in 2001 in Bucharest, Romania, EFMI STC 2012 is one of the most important European events in the common sphere of medicine and informatics in the year. Its major goal is to increase interaction and collaboration between the stakeholder groups from both health and ICT across, but not limited to, Europe. The 2012 event has been actively supported by the EFMI Working Groups “Assessment of Health Information Systems (EVAL)”, “Health Informatics for Interregional Communication (HIIC)”, “Health Information Management (HIME)”, and “Libre/Free and Open Source Software in Health Informatics (LI-FOSS)”.

The theme of STC 2012 is the implementation experience of large scale eHealth projects. Those large scale projects can be described by size, effects, complexity, duration etc. eHealth projects contribute to the success and sustainability of tomorrow's health care systems. Large scale projects are mostly accompanied by small and dedicated initiatives and solutions. STC 2012 will try to bring experience, innovation, new concepts and actual research and development into a constructive discussion resulting in a partnership for modernization. Success stories but also failures which provide a basis for further improvement of health information systems' applications shall be presented.

For successfully mastering the challenges in health supported by ICT, qualification and training of professionals and patients are utmost important prerequisites. So, educational programs and activities including didactic and technical innovations as well as eLearning play a big role in this year's event.

This publication reflects the objective of the conference to highlight large scale projects supporting the use of information and communication technology (eHealth) at national, regional, and also at international level. It results in requirements for national and regional solutions for medical informatics and health information management.

Russia joined the European Federation for Medical Informatics EFMI in 2006. Therefore, initiating or fostering partnerships for modernization with this important country is another goal of this STC. Efficient and effective delivery of health care requires accurate and relevant methodologies, e.g. patient-centered clinical data, its communication and application in medical decision support. This publication enables some insight in the use of information and communication technology in different countries. It is designed to have a high relevance in practice and further research.

The EFMI STC 2012 has been completed through seminars on “Open Source for Health Care” and “Good Evaluation Practice in Health Care using GEP-HI”.

The editors would like to thank all the authors for their excellent work as well as the reviewers for lending their expertise to the conference, thereby contributing to the final achievements. Furthermore, they are indebted to HL7 International and HL7 Germany for sponsoring the publication of the proceedings. Final thanks are dedicated to Thomas Schabetsberger, who collaboratively responded to all requests related to the Online-Submission System.

Bernd Blobel, Rolf Engelbrecht and Michael A. Shifrin

(Editors)

The paper refers to EFMI's initiatives to develop an international cooperation with different regional groups of IMIA. More details are presented about the successful project “TrEHRT - Traveler's Electronic Health Record Template”. Its potential applicability, compact structure and functional simplicity turned this product into a template capable to become an international standard, using mobile phones.

“We need a precise framework of regulations in order to maintain appropriate and structured health care documentation that ensures that the information maintains a sufficient level of quality to be used in treatment, in research and by the actual patient. The users shall be aided by clearly and uniformly defined terms and concepts, and there should be an information structure that clarifies what to document and how to make the information more useful. Most of all, we need to standardize the information, not just the technical systems.” (eHälsa – nytta och näring, Riksdag report 2011/12:RFR5, p. 37).

In 2010, the Swedish Government adopted the National e-Health – the national strategy for accessible and secure information in healthcare. The strategy is a revision and extension of the previous strategy from 2006, which was used as input for the most recent efforts to develop a national information structure utilizing business-oriented generic models. A national decision on healthcare informatics standards was made by the Swedish County Councils, which decided to follow and use EN/ISO 13606 as a standard for the development of a universally applicable information structure, including archetypes and templates.

The overall aim of the Swedish strategy for development of National Healthcare Information Architecture is to achieve high level semantic interoperability for clinical content and clinical contexts. High level semantic interoperability requires consistently structured clinical data and other types of data with coherent traceability to be mapped to reference clinical models. Archetypes that are formal definitions of the clinical and demographic concepts and some administrative data were developed. Each archetype describes the information structure and content of overarching core clinical concepts. Information that is defined in archetypes should be used for different purposes. Generic clinical process model was made concrete and analyzed. For each decision-making step in the process where information is processed, the amount and type of information and its structure were defined in terms of reference templates. Reference templates manage clinical, administrative and demographic types of information in a specific clinical context.

Based on a survey of clinical processes at the reference level, the identification of specific clinical processes such as diabetes and congestive heart failure in adults were made. Process-specific templates were defined by using reference templates and populated with information that was relevant to each health problem in a specific clinical context. Throughout this process, medical data for knowledge management were collected for each health problem. Parallel with the efforts to define archetypes and templates, terminology binding work is on-going. Different strategies are used depending on the terminology binding level.

Sharing of health data though the effective deployment of information systems should allow safer and more efficient health systems. However, to date many large IT system deployments in health care have had major short comings. This paper critically appraises the UK National Programme for IT and suggests where there are important lessons of for other large scale eHealth projects. Our method combined the classic evaluation methods of Donnabedian with Pawson's realistic review to analyze the impact of the program at health service, locality or major provider, and client-service impact levels. Financial incentives promoted uptake and use of IT systems at all levels. Health service level interventions that were capable of incorporation into clinical workflow were used. These included: a national unique identifier, creation of national registries and electronic transfer of data, records, and results. At the regional and major provider level we identified how vendors offer very different electronic patient record (EPR) systems which influence what is recorded and health care delivery. Using the EPR at the point of care takes longer, but this investment of time creates a more usable record and facilitates quality. National IT systems need to be clinically orientated, patient accessible, and underpinned by a secure, standardized back office system that enables messaging and information sharing between authenticated users. Learning the lessons from the UK and other large system deployments might enable other countries to leap to the forefront of health care computing.

Efficiency and privacy protection are essential when setting up nationwide research networks. This paper investigates the extent to which basic services developed to support the provision of care can be re-used, whilst preserving an acceptable privacy protection level, within a large Belgian primary care research network. The generic sustainable confidentiality management model used to assess the privacy protection level of the selected network architecture is described. A short analysis of the current architecture is provided. Our generic model could also be used in other countries.

Lab test result reporting has been fully implemented in Denmark since early 2000. Labtest ordering is much more complicated due to different handling and labeling procedures in more than 70 Danish labs. Until 2004 all orders were based on preprinted paper forms. A new electronic national lab test order solution based on national MedCom standards and codes was introduced in 2005 and it was fully implemented in all 2100 GP clinics and 1000 private specialist clinics in 3 years. It also included 42 biochemistry labs, 14 Microbiology labs and 16 histopathology and cytology labs. Implementation was organized by MedCom and planned in rough details. During the implementation period a set of planed and ad-hoc activities to reach 100 % implementation was successfully launched. Today more than 6.000.000 lab test orders (100%) are now handled electronically each year. The implementation process, the challenges: organizational and technically as well as outcome is described in the paper.

A number of registries of various levels (national, regional, etc.) were created in the Russian Federation during last two decades. Main principles of registries formation, as well as some limitations of the use of registries for assessment of treatment effectiveness and drug safety are discussed.

This paper presents an overview and comparison of national efforts on ePrescribing in Finland and Greece focusing on aspects of interoperability and standards. Building on experience of HL7 affiliates in Finland and Greece, the role of HL7 Clinical Document Architecture (CDA) in assuring interoperability within the national and cross-border framework for ePrescription is addressed underlining current use of standards and interoperability challenges for large scale adoption.

Health informatics programs usually are evaluated by national accreditation committees. Not always are the members of these committees well informed about the international level of (education in) health informatics. Therefore, when a program is accredited by a national accreditation committee, this does not always mean that the program is of an international level. Institutions may invite international experts to assess their educational programs. IMIA can serve as an intermediary for organizing the peer review. IMIA can play the role of accreditation committee and together with the institution assign an independent site visit committee to carry out the peer review. This contribution describes the IMIA accreditation procedure.

EuroMISE Center was established in the year 1994bas the joint workplace of Charles University in Prague and Academy of Sciences of the Czech Republic with the support of the European project focused on higher education in methodology field of healthcare. Nowadays, the EuroMISE Center is working as the joint workplace of five organizations. We describe in more details history and nowadays activities of the EuroMISE Center in the field of research, higher education and e₃ Health applications.

The publication of the International Medical Informatics Association revised version of the existing international recommendations in health informatics / medical informatics education was welcome positively by the educational community. The recommendations help to establish courses and complete programs in the field of Biomedical and Health Informatics (BMHI), to further develop existing educational activities in the various nations and to support international initiatives. The paper focuses on the Master's courses, which are the most widely established programs following the recommendations. The number of citations of the recommendations shows the worldwide acceptance. However, an in-depth review is recommended.

Education is the basis for running a health care system effectively and efficiently. It is integrated into the curriculum for medical students and supported by training. International participation in concept and practice will be necessary for success and further development. Institutional cooperation will transfer experience and recommendations. It may lead to a partnership for modernization on European level.

Large scale multiple venue institutions face problems when delivering educations to their healthcare staff. The present study is aimed at evaluating the feasibility of relying on e-learning for at least part of the training of the Salvatore Maugeri Foundation healthcare staff. The paper reports the results of the delivery of elearning courses to the personnel during a span of time of 7 months in order to assess the attitude to online courses attendance, the proportion between administered online education and administered traditional education, the economic sustainability of the online education delivery process. 37% of the total healthcare staff have attended online courses and 46% of nurses have proved to be the very active. The ratio between total number of credits and total number of courses for online and traditional education are respectively 18268/5 and 20354/96. These results point out that eLearning is not at all a niche tool used (or usable) by a limited number of people. Economic sustainability, assessed via personnel work hour saving, has been demonstrated. When distance learning is appropriate, online education is an effective, sustainable, well accepted mean to support and promote healthcare staff's education in a large scale institution.

New educational technologies prove to be capable of solving many problems in the medical training. Students do not see e-Learning as replacing traditional instructor-led training but as a complement to it, forming part of a blended-learning strategy. Innovations in e-Learning technologies point toward a revolution in education, allowing learning to be individualized (adaptive learning), enhancing learners' interactions with others (collaborative learning), and transforming the role of the teacher. The integration of e-Learning into medical education can catalyze the shift towards applying adult learning theory, where educators will no longer serve mainly as the distributors of content, but will become more involved as facilitators of learning and assessors of competency. This survey analyzes possibilities to effectively use e-Learning in medical education, and what steps are to be made in that direction.

In December 2011, the first phase of the project aimed at developing an information system for the implementation of individual rehabilitation programs for persons with disabilities was finished in Nizhny Novgorod region of Russia. It included the installation of 40 workstations in the Ministry for Social Policy and 8 institutions of Nizhny Novgorod region. Accumulated data were moved to a new information system based on a distributed database. In 2012, the rest of the regional rehabilitation institutions are to join this information system. A transition to a centralized database is planned.

A new distributed model of health care management is being introduced in England. Family practitioners have new responsibilities for the management of health care budgets and commissioning of services. There are national datasets available about health care providers and the geographical areas they serve. These data could be better used to assist the family practitioner turned health service commissioners. Unfortunately these data are not in a form that is readily usable by these fledgling family commissioning groups.

We therefore Web enabled all the national hospital dermatology treatment data in England combining it with locality data to provide a smart commissioning tool for local communities. We used open-source software including the Ruby on Rails Web framework and MySQL. The system has a Web front-end, which uses hypertext markup language cascading style sheets (HTML/CSS) and JavaScript to deliver and present data provided by the database. A combination of advanced caching and schema structures allows for faster data retrieval on every execution. The system provides an intuitive environment for data analysis and processing across a large health system dataset.

Web-enablement has enabled data about in patients, day cases and outpatients to be readily grouped, viewed, and linked to other data. The combination of web-enablement, consistent data collection from all providers; readily available locality data; and a registration based primary system enables the creation of data, which can be used to commission dermatology services in small areas. Standardized datasets collected across large health enterprises when web enabled can readily benchmark local services and inform commissioning decisions.

We present a new approach for pathogens and gene product normalization in the biomedical literature. The idea of this approach was motivated by needs such as literature curation, in particular applied to the field of infectious diseases thus, variants of bacterial species (S. aureus, Staphyloccocus aureus, ...) and their gene products (protein ArsC, Arsenical pump modifier, Arsenate reductase, ...).

Our approach is based on the use of an Ontology Look-up Service, a Gene Ontology Categorizer (GOCat) and Gene Normalization methods. In the pathogen detection task the use of OLS disambiguates found pathogen names. GOCat results are incorporated into overall score system to support and to confirm the decisionmaking in normalization process of pathogens and their genomes.

The evaluation was done on two test sets of BioCreativeIII benchmark: gold standard of manual curation (50 articles) and silver standard (507 articles) curated by collective results of BCIII participants. For the cross-species GN we achieved the precision of 46% for silver and 27% for gold sets. Pathogen normalization results showed 95% of precision and 93% of recall.

The impact of GOCat explicitly improves results of pathogen and gene normalization, basically confirming identified pathogens and boosting correct gene identifiers on the top of the results' list ranked by confidence. A correct identification of the pathogen is able to improve significantly normalization effectiveness and to solve the disambiguation problem of genes.

An extremely important area in which there is also vital information needed in different locations is the healthcare domain. In the areas of healthcare there is an important exchange of information since there are many departments where a patient can be sent for investigation. In this regard cloud computing is a technology that could really help supporting flexibility, seamless care and financial cuts.

In this study, a content analysis of Twitter is carried out to determine the frequency of tweets mentioning influenza like illnesses (swine flu, cold etc.) and results have been compared with news articles, Google search trends and national health statistics in Turkey. Between 1st January 2009 and 31st December 2010, over 4,165 influenza-related Turkish posts on Twitter and 10,000 news articles in three leading Turkish newspaper websites containing influenza related keywords have been analyzed. No strong correlation has been found between influenza related online data and the real world records. Although there is no significant relationship, this study shows that there is a huge amount of data can be harvested from the social web applications such as Twitter.

With the relentless increase of computer power and the widespread availability of digital patient-specific medical data, we are now entering an era when it is becoming possible to develop predictive models of human disease and pathology, which can be used to support and enhance clinical decision-making. The approach amounts to a grand challenge to computational science insofar as we need to be able to provide seamless yet secure access to large scale heterogeneous personal healthcare data in a facile way, typically integrated into complex workflows—some parts of which may need to be run on high performance computers—in a facile way that is integrated into clinical decision support software. In this paper, we review the state of the art in terms of case studies drawn from neurovascular pathologies and HIV/AIDS. These studies are representative of a large number of projects currently being performed within the Virtual Physiological Human initiative. They make demands of information technology at many scales, from the desktop to national and international infrastructures for data storage and processing, linked by high performance networks.

Driven primarily by advances in genomics, pharmacogenomics and systems biology technologies, large amounts of genomic and phenomic data are today being collected on individuals worldwide. Integrative analysis, mining, and computer modeling of these data, facilitated by information technology, have led to the development of predictive, preventive, and personalized medicine. This transformative approach holds the potential inter alia to enable future general practitioners and physicians to prescribe the right drug to the right patient at the right dosage. For such patient-specific medicine to be adopted as standard clinical practice, publicly accumulated knowledge of genes, proteins, molecular functional annotations, and interactions need to be unified and with electronic health records including phenotypic information, most of which still reside as paper-based records in hospitals. We review the state-of-the-art in terms of electronic data capture and medical data standards. Some of these activities are drawn from research projects currently being performed within the European Virtual Physiological Human (VPH) initiative; all are being monitored by the VPH INBIOMEDvision Consortium. Various ethical, legal and societal issues linked with privacy will increasingly arise in the post-genomic era. This will require a closer interaction between the bioinformatics/systems biology and medical informatics/healthcare communities. Planning for how individuals will own their personal health records is urgently needed, as the cost of sequencing a whole human genome will soon be less than U.S. $100. We discuss some of the issues that will need to be addressed by society as a result of this revolution in healthcare.

Distributed systems and grid computing systems are used to connect several computers to obtain a higher level of performance, in order to solve a problem. During the last decade, projects use the World Wide Web to aggregate individuals' CPU power for research purposes. This paper presents the existing active large scale distributed and grid computing projects with research focus in human health. There have been found and presented 11 active projects with more than 2000 Processing Units (PUs) each. The research focus for most of them is molecular biology and, specifically on understanding or predicting protein structure through simulation, comparing proteins, genomic analysis for disease provoking genes and drug design. Though not in all cases explicitly stated, common target diseases include research to find cure against HIV, dengue, Duchene dystrophy, Parkinson's disease, various types of cancer and influenza. Other diseases include malaria, anthrax, Alzheimer's disease. The need for national initiatives and European Collaboration for larger scale projects is stressed, to raise the awareness of citizens to participate in order to create a culture of internet volunteering altruism.