Ebook: eHealth Beyond the Horizon – Get IT There

The first part of the MIE 2008 conference theme – eHealth Beyond the Horizon – highlights the expectations for the future of eHealth and raises the question: What sort of developments in eHealth services can we imagine emerging above the horizon in the years to come? We have received a good number of high quality papers giving different perspectives of this future, some of them already available today in pilot scale, some of them outlined in visions.

The second part of the theme – Get IT there – has triggered a large number of papers describing how to create, evaluate, adjust and deliver products and deploy services in health care organizations for the necessary information technology as a basis for the eHealth applications that are essential in order to respond to the challenges of the health systems.

We, as society, are facing great challenges for our health systems. Our national health systems will have to treat proportionately more people due to the change in age distribution, with more illnesses, higher expectations, and more expensive technologies based on the biomedical scientific progress, but using proportionally less money and fewer workers. In addition, the increased mobility between countries within the European Union and a large number of immigrants from the war zones of the world creates challenges. On the other hand, the increased global co-operation and willingness of the countries to co-operate and address the possibilities for cross-border care – e.g. for highly specialised care and centres of excellence – give hope. The conference will address the challenges we face, in order to cope with these changes. We cannot know for sure what is below the horizon, but we know that enormous possibilities lie in eHealth.

As researchers, we will share our results and critical evaluation of new methods and possibilities. We encourage an open and constructive scientific discussion that is global in nature. We are very happy that this year MIE has also attracted a good number of non-European participants from all continents.

We, as stakeholders, want the medical informatics society to contribute substantially to the agenda and make the roadmap for the future health services. For several decades information technology has been applied in healthcare in interplay among stakeholders, organizations, and applications. Let us identify what makes a difference and brings the best of the past into the future.

When we grasp the future and have to fulfil the expectations, we have to ensure that the health applications are reliable, interoperable, sustainable, efficient, effective, and ubiquitous. The vital questions we therefore face are: What form of health systems, i.e. can we envisage which are sustainable in the long run, and how do we set about building them? How do we engage in optimizing the health services, given the complexity of current organizations, current skills and resource shortages, and the fundamental barriers that exist everywhere to undertake radical change?

Thoughts, visions, and objectives on the European arena have been brought forward by the European Commission with an action plan for a European eHealth Area: eHealth – making healthcare better for European citizens acknowledging that eHealth and interoperability can offer a number of golden opportunities. The 7th Framework Program will contribute to the realization of these visions.

This conference celebrates that 30 years have gone by since the first conference was organised by the European Federation of Medical Informatics – EFMI. The conference this year is organised by the Swedish Federation of Medical Informatics but the scientific evaluation and organisation of the conference has been conducted by a broad European Scientific Programme Committee in co-operation with the EFMI council. The following persons were members of the SPC: Stig Kjær Andersen (Chair), Jos Aarts, Marie-Christine Jaulent, Gunnar Hartvigsen, Jacob Hofdijk, Dipak Kalra, Gunnar Klein, Sabine Koch, Yunkap Kwankam, Victor Maojo, M. Cristina Mazzoleni, George Mihalas, Göran Petersson, Martin Rydmark, Stefan Schulz, and Hans Åhlfeldt. In addition, we were assisted by an international team of expert reviewers, listed in the following pages.

The Scientific Programme Committee received 360 submissions of which 267 were full papers. To ensure a high quality, each submission was reviewed by at least two reviewers. The entire review process took place in the period from November 15th 2007 to February 1st 2008 and was accomplished by 210 scientific peers, who accepted 142 papers for publication. Finally, a small team of editors, consisting of Andersen, Klein, Schulz, Aarts, and Mazzoleni, reviewed the accepted papers and ensured the incorporation of the reviewers' comments and improvement suggestions.

The papers in the proceeding are grouped by themes according to the submission categories and the supplied keywords. Within the themes, the papers are in alphabetic order by the first author. As the last theme, three doctoral students from different areas of medical informatics were selected to present and discuss their research under the guidance of a panel of distinguished research faculties.

Let MIE 2008 be an opportunity to bring together all stakeholders in the eHealth to come and to exchange knowledge and insight in a lively, stimulating, and creative environment, thus creating a common ownership to the future of eHealth.

The editors would like to thank all the authors of the scientific contributions, the reviewers and our colleagues of the Scientific Programme Committee.

Stig Kjær Andersen, Gunnar O. Klein, Stefan Schulz, Jos Aarts, M. Cristina Mazzoleni

The increasing amount of information available for biomedical research has led to issues related to knowledge discovery in large collections of data. Moreover, Information Retrieval techniques must consider heterogeneities present in databases, initially belonging to different domains—e.g. clinical and genetic data. One of the goals, among others, of the ACGT European is to provide seamless and homogeneous access to integrated databases. In this work, we describe an approach to overcome heterogeneities in identifiers inside queries. We present an ontology classifying the most common identifier semantic heterogeneities, and a service that makes use of it to cope with the problem using the described approach. Finally, we illustrate the solution by analysing a set of real queries.

The Gene Regulation Ontology (GRO) is designed as a novel approach to model complex events that are part of the gene regulatory processes. We introduce the design requirements for such a conceptual model and discuss terminological resources suitable to base its construction on. The ontology defines gene regulation events in terms of ontological classes and imposes constraints on them by specifying the participants involved. The logical structure of the ontology is intended to meet the needs of advanced information extraction and text mining systems which target the identification of event representations in scientific literature. The GRO has just been submitted to the OBO library and is currently under review. It is available at http://www.ebi.ac.uk/Rebholz-srv/GRO/GRO.html

The organisational culture of a health facility has been identified as a significant factor for successful implementation of clinical information systems. There have been no reported studies exploring the link between sub-cultures and the use of information systems. This study utilises cross sectional surveys to measure doctors' and nurses' perceptions of organisational culture and relate this to their use of a hospital-wide mandatory computerised pathology order entry (CPOE) system. Data were collected by administering an organisational culture survey (Organisational Culture Inventory, OCI) along with a user-satisfaction survey to a population of 103 doctors and nurses from two clinical units in an Australian metropolitan teaching hospital. We identified subcultures based on professional divisions where doctors perceived an aggressive/defensive culture (mean percentile score = 43.8) whereas nurses perceived a constructive culture (mean percentile score = 61.5). There were significant differences between doctors and nurses on three of the attitude variables with nurses expressing more positive views towards CPOE than doctors. The manifestation of subcultures within hospitals and the impact this has on attitudes towards clinical information systems should be recognized and addressed when planning for system implementation.

Nosocomial infections (NIs) – those acquired in health care settings – represent one of the major causes of increased mortality in hospitalized patients. As they are a real problem for both patients and health authorities, the development of an effective surveillance system to monitor and detect them is of paramount importance. This paper presents a retrospective analysis of a prevalence survey of NIs done in the Geneva University Hospital. The objective is to identify patients with one or more NIs based on clinical and other data collected during the survey. In this classification task, the main difficulty lies in the significant imbalance between positive and negative cases. To overcome this problem, we investigate one-class Parzen density estimator which can be trained to differentiate two classes taking examples from a single class. The results obtained are encouraging: whereas standard 2-class SVMs scored a baseline sensitivity of 50.6% on this problem, the one-class approach increased sensitivity to as much as 88.6%. These results suggest that one-class Parzen density estimator can provide an effective and efficient way of overcoming data imbalance in classification problems.

In the United States and Europe, electronic health records (EHRs) allow information technology and decision-support to facilitate the activities of clinicians and are considered an important component of health care improvement. However, actual adoption of EHRs by physicians has been slow and the use of decision support has been minimal. Part of the difficulty lies in the challenges that users face in capturing structured clinical information. Reference and administrative terminologies have been in use for many years and provide a critical infrastructure to support reimbursement, decision-support and data analysis. The problem is that physicians do not think and work using reference terminologies. Interface terminologies bridge the gap between information that is in the physician's mind and information that can be interpreted by computer applications. The maps from interface terminologies to appropriate reference terminologies enable advanced functionality in clinical information systems. The conflict between the need for timely adoption of health information technology and the need for standardization is also relevant to the problems faced by health information technology in Africa. The problem of clinicians having to communicate and/or record information in a format that is acceptable to someone else, somewhere else, leaves the true benefits of these systems beyond the reach of most in Africa. There is a growing effort in the United States to produce clinically-relevant interface terminologies mapped to standards. These interface terminologies can be expanded to incorporate the languages and clinical requirements of clinicians in Africa. The adoption of interface terminologies will help bring the value of standard terminology and the resulting benefits of decision-support, data analysis and information retrieval to parts of the world where they are needed most.

Among the numerous new functionalities of the Internet, commonly called Web 2.0, Web syndication illustrates the trend for better and faster information sharing. Web feeds (a.k.a RSS feeds), which were used mostly on weblogs at first, are now also widely used in academic, scientific and institutional websites such as PubMed. As very few French language feeds were listed or catalogued in the Health field by the year of 2007, it was decided to implement them in the quality-controlled health gateway CISMeF ([French] acronym for Catalogue and Index of French Language Health Resources on the Internet). Furthermore, making full use of the nature of Web syndication, a Web feed aggregator was put online in to provide a dynamic news gateway called “CISMeF actualités” (http://www.chu-rouen.fr/actualites/). This article describes the process to retrieve and implement the Web feeds in the catalogue and how its terminology was adjusted to describe this new content. It also describes how the aggregator was put online and the features of this news gateway. CISMeF actualités was built accordingly to the editorial policy of CISMeF. Only a part of the Web feeds of the catalogue were included to display the most authoritative sources. Web feeds were also grouped by medical specialties and by countries using the prior indexing of websites with MeSH terms and the so-called metaterms. CISMeF actualités now displays 131 Web feeds across 40 different medical specialities, coming from 5 different countries. It is one example, among many, that static hypertext links can now easily and beneficially be completed, or replaced, by dynamic display of Web content using syndication feeds.

A videophone system was used to link cancer patients, undergoing chemotherapy at home, with care providers in the Home Healthcare Facility at the University Hospital Centre of Grenoble. The participant patients expressed their satisfaction both with the use and the technical quality of the system. Improvement was observed in the Hospitalisation Anxiety and Depression Scale (HADS), SF36 Health Survey Questionnaire and Palliative care Outpatient Scale (POS) scores during and at the end of the experiment. The results indicated that the use of videophones was both feasible and satisfactory, and that they may have a positive effect on the cancer patient's quality of life at home. Further studies are necessary to prove this final observation.

For an effective integration of microarray-based technologies in clinical settings a number of contributions from biomedical informatics technologies and techniques are needed to facilitate the improvement of the phases of experimental design, image analysis, data management, annotation, and analysis. In this communication we briefly present the state-of-the-art in the application of biomedical informatics to laboratories conducting microarray experiments and how our unit is coping with these requirements imposed by the routine clinical work of the National Centre of Microbiology, a reference laboratory for the Spanish Health System.

Rare diseases include a group of conditions characterized by a prevalence lower than 5 per 10,000 in the community. In France, any rare disease affects less than 30,000 patients and often much less. Three to 4% of children and 6% of the population in Europe are affected. It is a true public health stake since most diseases do not have any curative treatment. In France, the Ministry of Health has initiated a National Rare Diseases Plan. Twenty five out of 132 labelled Reference Centres (RC) decided to share a common Information System named CEMARA. It is dedicated to collect continuous and complete records of all patients presenting with a rare disease, and their follow-up. The main objective of CEMARA is to contribute to the missions of the RC regarding the registration and description of their activities, coordination of the network of their correspondents, organization of the follow-up of rare diseases, and analysis of the epidemiological patterns. A description of CEMARA is provided as well as its cooperation with Orphanet and Genatlas, and a presentation of 11803 current records collected by more than 300 health care professionals belonging to more than 70 sites.

Improving Shared Decision Making (SDM) and patient-provider communication, and providing all citizens with equal access to health information has become a high priority health policy goal. In this interdisciplinary, international research collaboration we develop and test CONNECT (Care Online: Novel Networks to Enhance Communication and Treatment), a patient portal that integrates a suite of context-sensitive patient communication and information tools into a patient-clinician shared electronic health record that patients can use seamlessly through heterogeneous networks from different locations (home, hospital, doctor's office). In this paper we present methods used to develop CONNECT; how to safeguard data security and confidentiality and adapt user interfaces to different users, devices and contexts of use; as well as ensure safe and efficient data transfer through heterogeneous networks; and critical success factors and challenges.

The objective of this prospective clinical usage study was to examine the value of the rule based ‘Therapeutic Assistant’ integrated into an existing Patient Data Management System (PDMS) in helping to prescribe a initial antibiotic regime in accordance with the requirements of accepted guidelines. A prospective study comparing data before and after the introduction of the ‘Therapeutic Assistant’ was carried out. An adequate therapy resulted significantly more often after the introduction of the ‘Therapeutic Assistant’ [p<0.05]; however no difference between the regimes with and without the ‘Therapeutic Assistant’ in the period after its introduction could be established. Whether the ‘Therapeutic Assistant’ influenced the prescriptions made without it will have to be established in a further study.

Computer and video games for children have gained negative publicity due to reported associations between intensive gaming and aggressive behaviour, school failure, and overweight. While most studies centre upon negative consequences of video games, their innovative potentials tend to be overlooked. One field for the innovative use of computer games is child psychotherapy. By including therapeutic concepts into a video game, children can be offered attractive electronic homework assignments that enable them to rehearse and repeat basic psychoeducational concepts they have learned during therapy sessions. Moreover, therapeutic games can help therapists to structure therapy sessions. Psychotherapeutic computer games translated into foreign languages could form a useful tool in the treatment of migrant children. ‘Treasure Hunt’ is the first serious game based on principles of cognitive behaviour modification. It is developed for eight to twelve year old children who are in cognitive-behavioural treatment for various disorders. Reactions of children and therapists to experimental versions of the game are positive. Serious games might prove a useful tool to support psychotherapeutic treatment of children.

The purpose of this project was to investigate the effects of Virtual Reality technology and haptics for stroke rehabilitation. Twenty-nine stroke subjects, 17 women, and 12 men aged 44–85 years, participated in three different studies. All participants responded favorable to the use of the VR activity station. A change of attitude took place after the subjects were exposed to playing computer games. The general experience with the VR application approach suggests that this treatment concept is promising in stroke rehabilitation, with a wide range of applicability.

This paper describes an easy to use home-based eHealth system for chronic disease management. We present the design and implementation of a prototype for home based education, exercises, treatment and following-up, with the TV and a remote control as user interface. We also briefly describe field trials of the system for patients with COPD and diabetes, and their experience with the technology.

While the public has increasingly access to medical information, specialized medical language is often difficult for non-experts to understand and there is a need to bridge the gap between specialized language and lay language. As a first step towards this end, we describe here a method to build a comparable corpus of expert and non-expert medical French documents and to identify similar text segments of lay and specialized language. Among the top 400 pairs of text segments retrieved with this method, 59% were actually similar and 37% were deemed exploitable for further processing. This is encouraging evidence for the target task of finding equivalent expressions between these two varieties of language.

One of the tasks towards the definition of a knowledge model for home care is the definition of the different roles of the users involved in the system. The roles determine the actions and services that can or must be performed by each type of user. In this paper the experience of building an ontology to represent the home-care users and their associated information is presented, in a proposal for a standard model of a Home-Care support system to the European Community.

An information system supporting pain assessment in palliative home healthcare was implemented at the hospital-based home care clinic of University Hospital in Linköping, Sweden. Using digital pens and pain diaries, pain assessments were sent from the patients' home to the professional caregiver. A total of 12 patients participated in the study. Patients, spouses and professional caregivers were interviewed. Qualitative content analyses were performed on the study material. All patients managed to use the pain assessment method, they experienced an improved contact with the caregivers and had a sense of increased security. After an initial cautious outlook the caregivers experienced positive outcomes for themselves and their patients. The medical records showed that the method had had impact on treatment. In conclusion, the home healthcare solution provided an effortless method for pain assessment with a high degree of user acceptance for palliative patients and had positive influences on the care.

Industrial countries are faced with a growing elderly population. Homecare systems with assistive smart house technology enable elderly to live independently at home. Development of such smart home care systems is complex and expensive and there is no common reference model that can facilitate service reuse. This paper proposes reusable actor and service models based on a model-driven development process where end user organizations and domain healthcare experts from four European countries have been involved. The models, specified using UML can be reused actively as assets in the system design and development process and can reduce development costs, and improve interoperability and sustainability of systems. The models are being evaluated in the European IST project MPOWER.

Trends towards lower levels of physical activity have raised health concerns. Tools to capture, store and use information about physical activity might improve motivation to increase the level of such activity. This is especially important for Type 2 diabetes, since physical activity is one of the key components in achieving healthy blood glucose values. Over a period of four months, 15 people with Type 2 diabetes provided us with input on how a mobile system needs to be put together. Generally, they answered that such tools must be integrated as well as possible with their other daily tools and clothing. Based on their inputs, we built a sensor system for monitoring physical activity. The system automatically and wirelessly reports the accumulated number of steps taken, using a mobile phone as the patient terminal. We asked 1001 persons about their use of step counters/pedometers. About 6.5% of them use such a device daily and about 20% daily, weekly or monthly. Our concept differs from others of this nature in its simplicity, size and integration with other relevant patient data. It is fully manageable by patients themselves as a self-help tool.

Software-based medical knowledge packages (MKPs) are packages of highly structured medical knowledge that can be integrated into various health-care information systems or the World Wide Web. They have been established to provide different forms of clinical decision support such as textual interpretation of combinations of laboratory rest results, generating diagnostic hypotheses as well as confirmed and excluded diagnoses to support differential diagnosis in internal medicine, or for early identification and automatic monitoring of hospital-acquired infections. Technically, an MKP may consist of a number of inter-connected Arden Medical Logic Modules. Several MKPs have been integrated thus far into hospital, laboratory, and departmental information systems. This has resulted in useful and widely accepted software-based clinical decision support for the benefit of the patient, the physician, and the organization funding the health care system.

The appropriate anesthetic techniques and care during and after operation rely on data gathered during the preoperative assessment. Because various people are involved, standardization of this process is important. This paper provides a systematic literature review about which data items are collected in the preoperative assessment. Thirty-two relevant articles were found by PubMed search. To categorize data SNOMED CT concepts are used, resulting in 13 categories totaling 540 data items. The two largest categories of data were “past history of clinical finding”, and “physical examination procedure” with 251 and 75 data items respectively. Our study showed a high diversity of data items in the preoperative assessment. Because of the diversity of patients and treatment options available one undisputed preoperative assessment data set is hard to define. However, to solve the problem of exchangeability of the information at least anesthesiologists should use a same core set of data.