Ebook: Quality of Life through Quality of Information

The theme of MIE2012 is ‘Quality of Life through Quality of Information’. The importance of Information towards Quality of Health Care and Quality of Life is highlighted across the current proceedings. The 24th Medical Informatics in Europe Conference (MIE2012) has been organised by the European Federation for Medical Informatics (EFMI) with the collaboration of the Italian Medical Informatics Association (AIIM) and the Italian e-health Community, and takes place in the historical city of Pisa, Italy from 26th to 29th of August, 2012.

EFMI is a federation of national medical informatics associations from 32 European countries, and its purpose is to develop and disseminate knowledge and expertise in the field of biomedical and health informatics. Besides the national associations, the working groups, which include experts in specialist fields ranging from electronic patient records, medical imaging, and evaluation to nursing and rehabilitation, are the main channel through which new knowledge and ideas are developed and disseminated. Because EFMI understands the role which application and implementation plays, a third pillar has been introduced to the federation, that of the Institutional Members, such as industries, academic institutions and organisations.

The conference is being held in Pisa, a city well known not only for its famous leaning tower, but also as the birthplace of Galileo Galilei, who some consider to be the father of modern science. He was responsible for introducing the notion of experimental proof into scientific research. It is this approach which is, without any doubt, crucial to our research in medical informatics. We need evidence before we can apply our knowledge to health care; evidence-based medicine needs quality information in order to lead to quality of health, and thus to quality of life.

The conference focuses on the role of e-health in pursuing benefits in terms of quality of life for patients, health-care personnel, citizens and society. The topic can be analysed from many points of view, and MIE2012 provides a unique platform for the fruitful exchange of ideas and experiences among the actors and stakeholders of ICT supported healthcare. Both methodologies and examples of applications form the basis for the discussion, and all of us will learn, not only from success stories in the field, but also from failures. The opinion and experiences of the designers and planners, as well as those of users, are of great importance when the target is the global improvement of quality of life, at both personal and public level. For this reason we encourage health professionals, policy makers and also patients and citizens' associations to take an active part in the conference and share their knowledge.

The present volume incorporates contributions related to the latest achievements in biomedical and health informatics in terms of major challenges such as interoperability, collaboration, coordination, and increasingly, patient oriented health care at the most appropriate level of care. The papers also provide new perspectives for the future of biomedical and health informatics, critical appraisals of strategies for user involvement, insights for design, deployment, and sustainable use of electronic health records, standards, social software, citizen centred e-health, and new challenges in rehabilitation and social care informatics, where health professionals collaborate in teams with colleagues and with their patients.

MIE2012 also introduces the ‘Village of the Future’; a vibrant agora where national, regional and European projects, as well as other initiatives, present, demonstrate, discuss and share ideas and innovations in the ‘eLounge’, creating new coalitions for the future. The village provides an opportunity to get involved in presentations, demonstrations, and living poster and collaborative sessions. The village is open to all ‘citizens’, with a focus on the younger generation, who can present new initiatives and results. In particular, presentations will be based on technologies such as the semantic web, social media and web 2.0/3.0, which contribute to new ways of delivering health-care and facilitating a higher quality of life for citizens, patients and health professionals alike. The presentations form part of the electronic version of the proceedings, and are not included in the current volume.

The Scientific Programme Committee of MIE2012 received 449 submissions. The selection process presented a major challenge for the SPC. Almost all submissions were reviewed by three reviewers. The reviews were accompanied by suggestions and advice for possible improvements to the contribution. In case of conflicting opinions, the SPC appointed additional reviewers. We are indebted to the 205 colleagues who volunteered their time and energy to be involved in this peer review processes, which necessitated 1,077 individual reviews. The reviewers are listed in the appendix as a token of our appreciation for their effort and dedication.

The programme for MIE2012 consists of 206 oral presentations of full papers, 48 posters, 25 short communication oral presentations, 26 short communication posters, 11 workshops, 2 EFMI WG workshops, 6 tutorials, and 2 panels. It is encouraging that so many of the submissions are from young researchers, and we are pleased that MIE2012 provides an arena where they can begin to exchange their ideas and findings with their peers. Furthermore, MIE2012 hosts an application oriented track, the ‘Village of the Future’, where EFMI institutional members and corporate affiliates can discuss pressing issues and innovations headed for the market, and where the latter will also be demonstrated.

Most of the topics presented at MIE2012 are interdisciplinary in nature and of interest to a variety of professionals: physicians, nurses, and allied health providers, health informaticians, engineers, academics and representatives from industry and consultancy in the various fields. This European conference commands an international audience, gathering participants from most parts of the world. This is reflected by the nationalities of the 1,016 contributing authors, originating from 43 countries in Europe, the Middle East, Asia and Africa, as well as South and North America.

Conference proceedings consist of a printed version and an electronic version, and are considered to be an integral part of MIE2012. The printed version includes full papers accepted for presentation as well as posters, and all are indexed in Medline. The CD version of the proceedings includes the full papers, posters, short communications, workshops, tutorials, panels, and a synopsis of the ‘Village of the Future’. The CD is an EFMI publication, which will also be available online at www.EFMI.org after a period agreed with the publisher.

We are grateful to the colleagues who served as members of the executive SPC, and to the affiliate, Dr. Dimitrios Zikos. We would also like to express our thanks to Drs. Jacob Hofdijk and Dr. Christian Lovis for coordinating the ‘Village of the Future’. Thanks also to Professor Jana Zvarova for chairing the subcommittee for workshop and panel selection. Finally, we take this opportunity to thank the members of the award committees for the Peter Reichertz Prize, awarded for the best paper by a young scientist; the Rolf Hansen Prize for the best paper on a clinical information system; and the poster prize for the best poster.

John Mantas

Stig Kjær Andersen

Maria Cristina Mazzoleni

Bernd Blobel

Silvana Quaglini

Anne Moen

Pisa, 25/06/2012

Curricular recommendations coming from highly respectable associations are highly useful. Nevertheless, they show fatigue in keeping the pace of any fast evolution, as in the ICT happens. So we do the attempt to disclose the emerging challenges affecting e-Health curricular education.

The paper addresses the complex interplay between patients, healthcare professionals, and technology in relation to the treatment of chronic patients. It reflects on an ongoing interdisciplinary action research project striving to design and implement IT support for communication and collaboration in the distributed heterogeneous network of chronic patients and the healthcare professionals that take care of them. An interactive personal health record (PHR) has been designed as part of the project. As such it is part of a trend to find ways to include patients in their own care process. This has been motivated by expected health benefits for the patients as well as promises to lead to reduced costs for a burdened healthcare system.

In nowadays aging society, many people require assistance for activity of daily living. In most cases technologies have the potential to improve the quality of life for the older and disabled. We show how the use of a robotic platform with some embedded intelligence, the i-Walker, can help to improve the performance of the post-stroke individuals' rehabilitation.

Academic biomedical informatics has achieved great successes through research contributions over several decades, now reflected in a thriving commercial marketplace for electronic health records and other informatics tools. That very success, coupled with changes in the ability of governments to support research at past levels, is forcing a reconsideration of the directions and emphases for faculty members in informatics academic units. This paper discusses those forces and proposes areas of emphasis that will strengthen the academic discipline as it evolves in the years ahead. The focus is on the role of academic informaticians as practitioners of informatics, as researchers, and as educators.

Patients have moved away from being passive recipients of care. They require access to their own health data, shared decision making and control over their care pathways. eHealth offers the tools to meet these requirements and to support both patients and care providers. However, opinions diverge in how far a patient-provider partnership should be supported or full consumer autonomy be provided and there is still not enough evidence on how to design and implement effective eHealth solutions that create patient benefits. In this keynote paper different perspectives on the patient empowerment process, outcome measurement and eHealth development will be discussed as well as ongoing developments in the field of e-citizen services be presented.

Prospective Health Technology Assessment (ProHTA) is a new and innovative approach to analyze and assess new technologies, methods and procedures in health care. Simulation processes are used to model innovations before the cost-intensive design and development phase. Thus effects on patient care, the health care system as well as health economics aspects can be estimated. To generate simulation models a valid information base is necessary and therefore conceptual modeling is most suitable. Project-specifically improved methods and characteristics of simulation modeling are combined in the ProHTA Conceptual Modeling Process and initially implemented for acute ischemic stroke treatment in Germany. Additionally the project aims at simulation of other diseases and health care systems as well. ProHTA is an interdisciplinary research project within the Cluster of Excellence for Medical Technology - Medical Valley European Metropolitan Region Nuremberg (EMN), which is funded by the German Federal Ministry of Education and Research (BMBF), project grant No. 01EX1013B.

This paper describes an approach to build a Data Definition Ontology (DDO) in the context of full domain ontology integration with datasets in order to share and query clinical heterogeneous data repositories. We have adapted an existing semantic web tool (D2RQ) to implement a process that automatically generates the DDO from a database information model, thanks to reverse engineering and schema mapping approaches. This study has been performed in the context of the DebugIT European project (Detecting and Eliminating Bacteria UsinG Information Technology) that aims to control and monitor the bacterial growth via a semantic interoperability platform (IP). The evaluation of the process is based, first, on the accuracy of the produced DDO for different samples of database storage and second, by checking the congruency between the DDO and the D2RQ database mapping file.

A standardized end-to-end solution has been implemented with the aim of supporting the semantic integration of clinical content in institution spanning applications. The approach outlined is a proof-of-concept design. It has shown that the standards chosen are suitable to integrate device data into forms, to document the results consistently and finally enable semantic interoperability. In detail the implementation includes a standardized device interface, a standardized representation of data entry forms and enables the communication of structured data via HL7 CDA. Because the proposed method applies a combination of standards semantic interoperability and the possibility of a contextual interpretation at each stage can be ensured.

The realisation of semantic interoperability, in which any EHR data may be communicated between heterogeneous systems and fully understood by computers as well as people on receipt, is a challenging goal. Despite the use of standardised generic models for the EHR and standard terminology systems, too much optionality and variability exists in how particular clinical entries may be represented. Clinical archetypes provide a means of defining how generic models should be shaped and bound to terminology for specific kinds of clinical data. However, these will only contribute to semantic interoperability if libraries of archetypes can be built up consistently. This requires the establishment of design principles, editorial and governance policies, and further research to develop ways for archetype authors to structure clinical data and to use terminology consistently. Drawing on several years of work within communities of practice developing archetypes and implementing systems from them, this paper presents quality requirements for the development of archetypes. Clinical engagement on a wide scale is also needed to help grow libraries of good quality archetypes that can be certified. Vendor and eHealth programme engagement is needed to validate such archetypes and achieve safe, meaningful exchange of EHR data between systems.

While HL7 CDA is a widely adopted standard for the documentation of clinical information, the archetype approach proposed by CEN/ISO 13606 and openEHR is gaining recognition as a means of describing domain models and medical knowledge. This paper describes our efforts in combining both standards. Using archetypes as an alternative for defining CDA templates permit new possibilities all based on the formal nature of archetypes and their ability to merge into the same artifact medical knowledge and technical requirements for semantic interoperability of electronic health records. We describe the process followed for the normalization of existing legacy data in a hospital environment, from the importation of the HL7 CDA model into an archetype editor, the definition of CDA archetypes and the application of those archetypes to obtain normalized CDA data instances.

In a competitive world, healthcare organizations are forced to make improvements in order to compete and prosper. Healthcare services suffer from lack of change and inefficiency, which affects the delivery of sustainable services. We propose a method based on DEMO to find non value-added transactions that must be redesigned to simplify processes. This methodology was chosen as a basis for our solution because it provides a better understanding of the dynamics of an organization, has a strong and well-formed theory, and allows a good alignment between the enterprise design and operation. A demonstration of the method was accomplished in an emergency department, making it possible to find transactions that can be improved or automated. To evaluate the results we used interviews, Moody and Shanks Quality Framework, and the Four Principles from Österle et al., which shows that the method yields an adequate and clear process view and is reliable when it comes to improving healthcare operational processes.

The relevance of controlled vocabularies in promoting the standardized representation and exchange of clinical data is no longer to be proved. As part of a national project we evaluated the integration of classifications and terminologies in metadata registries based on the standard ISO/IEC 11179 Information technology - Metadata Registries (MDR). To overcome integration and maintenance tasks of monohierarchical classifications in the MDR, and to provide an exchange format between classifications publishers and the MDR, we implemented an import interface based on the Classification Markup Language (ClaML). The implementation transforms classifications from ClaML into a MDR conform structure using the Extensible Stylesheet Language Transformation (XSLT). Several XSLT-scripts were linked and successively executed. The national obliged classifications ICD-10-GM and OPS could be hence imported into the MDR. Problems arose with different interpretations and extensions of ClaML by WHO and the national publisher. We therefore advocate a unique interpretation of ClaML as prerequisite for a general use of the ClaML import interface.

Biomedical data collections are typically compiled on the basis of assessment instruments and associated terminologies and their data structure explained by means of data dictionaries. The Information Artifact Ontology (IAO) is an attempt to give a realism-based account of the essence of information entities and how components of such entities relate to each other and to that what they are information about. Changes in the taxonomy and the definitions of the IAO, most importantly the addition of the terms ‘representational artifact’ and ‘representational unit’, are proposed to make the IAO a useful tool to clarify formally the distinctions and commonalities between data collections and associated artifacts that are compiled independently from each other, yet cover the same domain.

In the context of PROTECT European project, we have developed an ontology of adverse drug reactions (OntoADR) based on the original MedDRA hierarchy and a query-based method to achieve automatic MedDRA terms groupings for improving pharmacovigilance signal detection. Those groupings were evaluated against standard handmade MedDRA groupings corresponding to first priority pharmacovigilance safety topics. Our results demonstrate that this automatic method allows catching most of the terms present in the reference groupings, and suggest that it could offer an important saving of time for the achievement of pharmacovigilance groupings. This paper describes the theoretical context of this work, the evaluation methodology, and presents the principal results.

Objective: The objective of this paper is to describe by a Platform Independent Model, the formal specification of an ontology-based service for electronic health records interoperability.

Methods: The GCM is used as a framework for the service's architectural design. The formal specification of the service is an extension of the OMG CTS 2 specification. A review of mapping approaches is also provided.

Results: The paper describes the service' information and computation models, including the mapping process workflow. The platform specific implementation (Platform Specific Model) is provided as a set of WSDL interfaces. The specification includes ontology mapping algorithms and tools needed.

A collaboration between the International Health Terminology Standards Development Organisation (IHTSDO®) and the World Health Organization (WHO) has resulted in a priority set of cross maps from SNOMED CT^® to ICD-10^® to support the epidemiological, statistical and administrative reporting needs of the IHTSDO member countries, WHO Collaborating Centres, and other interested parties. Overseen by the Joint Advisory Group (JAG), approximately 20,000 SNOMED CT concepts have been mapped to ICD-10 using a stand-alone mapping tool. The IHTSDO Map Special Interest Group (MapSIG) developed the mapping heuristics and established the validation process in conjunction with the JAG. Mapping team personnel were selected and then required to participate in a training session using the heuristics and tool. Quality metrics were used to assess the training program. An independent validation of cross map content was conducted under the supervision of the American Health Information Management Association. Lessons learned are being incorporated into the plans to complete the mapping of the remaining SNOMED CT concepts to ICD-10.

In this paper, we introduce an application of Proxima and define a new measure of proximity between two concepts present in an ontology. The approach is based on the three dimensions of a conceptualization: intension with relations between concepts, expression with terms denoting concepts, and extension with instances of concepts. This preliminary work, in the field of rare diseases, involved the Orphanet Ontology of Rare Diseases (OntoOrpha) and corpus of texts extracted from Online Inheritance in Man (OMIM). The proximity measurements are consistent with an appropriate representation of groups of diseases in the ontology, which are derived from the Orphanet classifications of rare diseases. Other semantic relations are explored and new perspectives in medical knowledge curation are proposed.

Increasing physician adherence to the clinical practice guidelines (CPG) for infections should improve antibiotic prescription practices. The aim of this study was to present the decision elements of these CPG in an original interface to be implemented in the website “Antibiocarte”. We manually analyzed all CPG available for ambulatory treatment of infections. We extracted all terms related to the antibiotic therapy decisions and grouped them into decision or action variables. We then modeled the antibiotic therapy decision process and designed an interface according to ergonomic principles. The interface consists of five fixed parts: a decision table, two information zones, a zone with the reasons for hospitalization, and a zone with situations not concerned by the CPG. All CPG could be implemented according to this model. The usability of the new interface was evaluated by ten general practitioners using the System Usability Scale (SUS) and found to be satisfactory and appropriate for clinical use.

Knowledge defines how an automated system transforms data into information. This paper suggests a representation method of medical imaging knowledge using fuzzy inference systems coded in XML files. The imaging knowledge incorporates features of the investigated objects in linguistic form and inference rules that can transform the linguistic data into information about a possible diagnosis. A fuzzy inference system is used to model the vagueness of the linguistic medical imaging terms. XML files are used to facilitate easy manipulation and deployment of the knowledge into the imaging software. Preliminary results are presented.

Magnetic Resonance Imaging is an essential diagnostic imaging technique. The complexity of interpreting MRI images is often compounded by the presence of a wide range of artifacts which are often challenging to identify and eliminate. Ontology permits the construction of a knowledge database with which users can interact given an appropriate interface. The goal of this work is to create an interactive tool for the ontology of MRI artifacts that will allow a radiologist to compare any given MRI artifact image with those contained in the ontology.

Material and method: Using Protégé 4, we have constructed the ontology with input from an expert in MRI artifacts and utilizing images exemplifying such artifacts. The graphical user interface has been built in Java and the linkage with the ontology made with Owl API. Results: Using the tool, users can compare imaging artifacts encountered in daily practice to those in the database. Once a user has identified the image the most similar to their own, they then have instantaneous access to the knowledge contained in the ontology about the artifact. Individual users can also submit images and have access to DICOM data.

Multiple myeloma (MM) is a malignant disorder characterized by the monoclonal proliferation of B cell derived plasma cells in the bone marrow. The diagnosis depends on the identification of abnormal monoclonal marrow plasma cells, monoclonal protein in the serum or urine, evidence of end-organ damage, and a clinical picture consistent with MM. The distinction between MM stages— monoclonal gammopathy of undetermined significance or indolent myeloma—is critical in guiding therapy. This paper describes how to produce ontology-driven semiological rules base (SRB) and a consultation form to aid in the diagnosis of plasma cells diseases. We have extracted the MM sub-ontology from the NCI Thesaurus. Using Protégé 3.4.2 and owl1, criteria in the literature for the diagnosis and staging of MM have been added to the ontology. All quantitative parameters have been transformed to a qualitative format. A formal description of MM variants and stages has been given. The obtained ontology has been checked by a reasoner and instantiated to obtain a SRB. The form created has been tested and evaluated utilizing 63 clinical medical reports. The likelihood for a disease being the correct diagnosis is determined by computing a ratio. The resulting tool is relevant for MM diagnosis and staging.

In order to be able to automatically calculate clinical quality indicators, we have proposed CLIF, a stepwise method for clinical quality indicator formalisation. Quality indicators are used for external accountability and hospital comparison. As clinical quality indicators are computed in a decentralised manner by the hospitals themselves, reproducibility of the formalisation method is essential to ensure the comparability of calculated values. Thus, we performed a case study to investigate the reproducibility of CLIF. Eight participants formalised the same sample quality indicator with the help of a web-based indicator-authoring tool that facilitates the application of CLIF. We analysed the results per step and concluded that the method itself leads to reproducible results. To further improve reproducibility, ambiguities in the indicator text must be clarified and trained experts are needed to encode clinical concepts and to specify the relations between concepts.