Ebook: User Centred Networked Health Care

This volume of Studies in Technology and Health Informatics contains the proceedings of MIE2011, the 23^rd Conference of the European Federation of Medical Informatics. MIE2011 is hosted by Forum for Databehandling i Helsesektoren (FDH) in collaboration with the European Federation of Medical Informatics (EFMI). MIE2011 builds on the traditions of 22 preceding MIEs, starting in Cambridge (1978), and more recently in Geneva (2005), Maastricht (2006), Gothenburg (2008) and Sarajevo (2009).

The special theme for MIE2011 is “User centered networked health care”, highlighting design for and experiences by health professionals and patients working and living in ICT enabled environments. This ties into the Scandinavian tradition of active user involvement in all aspects of design and implementation of complex workplace technology. MIE2011 will highlight the broad range of health informatics research and innovations at regional, national, and international levels. Health care is transforming into a networked activity where strict boundaries between health care facilities and the home are vanishing. Patients demand and require continuity of care. Health care providers become team players sharing decision-making responsibilities with colleagues and patients. This poses interesting challenges for health informatics, where critical appraisal of strategies for user involvement, deployment and sustainable use of information systems and new forms of patient-provider collaboration are needed. Ideas presented as “meaningful use” open additional perspectives and exciting opportunities to ensure that the users, understood broadly as health providers, patients, their families or consumers at large, would be offered solutions according to their needs. Such trends and developments are recognized across the contributions at MIE2011.

Related to the specific theme, let us highlight specifically:

• User-centeredness is discussed in terms of usability and usefulness for the health provider, but also in terms of citizen orientation, empowerment and opportunities for patient-provider collaboration or self-care enabled by web applications.

• Networked health care may be realized by an integrated, operational EHR in collaborative environments where appropriate information is available at the point of need. Continued development of standards and terminologies is complemented with search strategies to make sense of free text entries in several languages.

• Coordination and collaboration in an institution or across levels of care is another line of development towards patient oriented health care where current developments discussions of interoperability, standards and search strategies in new ways. Such achievements also calls for discussions of privacy and security, as well as careful evaluation to systematize and share the experiences and gains.

• The changing environments of care reflect the changing division of labor and calls for more permeable boundaries between community health, primary care, and specialized care to support unfolding patient trajectories of care. In this picture, integration and additional perspectives in health informatics, like social care informatics, open opportunities to support mobility of patients and providers in new and innovative ways.

MIE2011 received approximately 500 submissions for consideration. Selection has been a major challenge for the Scientific Program Committee. The majority of the submissions received three reviews, which were accompanied by suggestions and advice for possible improvements of the contribution. We are indebted to the over 220 colleagues who volunteered time and energy to serve as reviewers. To honor their contribution they are all listed in this book. The Conference Program and the Proceedings offers a selection of oral presentations submitted as full papers or short communications, as well as workshops, panels and posters. Many of these activities are sponsored by the EFMI Working Groups. It is encouraging for the development of health informatics that many of the submissions are by young researchers. We are pleased that MIE2011 is an arena where they choose to share their ideas and findings with peers. Furthermore, MIE2011 will host an application oriented track “partnerships in innovation” where EFMI institutional members and corporate affiliates participate actively.

Most topics presented in this MIE2011 proceedings are interdisciplinary in nature and may interest a variety of stakeholders: nurses, physicians and allied health providers, health IT specialists, informaticians, engineers, academics and representatives from industry and consultancy. This European conference gathers participants from most parts of the world, reflected by the nationalities of the more than 1150 contributing authors representing Europe, Asia, Africa as well as South and North America. We hope you will enjoy the program of keynotes, presentations of accepted papers, workshops, panels and posters and participate in exchange of ideas and experiences.

The proceedings is an integral part of MIE2011. The printed version of the MIE2011 proceedings includes the PubMed indexed, full papers accepted for presentation. The MIE2011 CD includes the printed proceedings (i.e., the full papers), short communications, posters, workshops, panels as well as demonstrations and the “partnership in innovation” synopses. To facilitate wider access to the material presented during MIE2011, the proceedings with the full papers will be available from IOS Press online book platform. The additional material on the CD will be handled as an EFMI publication.

We are grateful to the colleagues who agreed to serve as members of the SPC core: Drs. Truls Østbye, Elske Ammenwerth, Ronald Cornet, Rolf Engebrecht, Sabine Koch, Silvana Quaglini, Pieter Toussaint, and Rune Fensli. Dr. Alexander Horsch chaired the subcommittee for workshop and panel selection. Dr. Sabine Koch chairs the award committee for the Peter L. Reichertz Prize that will be awarded to the best paper by a young scientist, Dr. Robert Cornet chairs the committee selecting recipient of the Rolf Hansen Prize for the best paper on clinical information system and Dr. Elske Ammenwerth chairs the committee selecting recipient ofthe prize for the best poster.

Acknowledgement: The editorial team is grateful to Ms. Shazia Mushtaq for her careful and extensive work editing the submissions and preparing the proceedings.

Oslo, Aalborg, Rotterdam, June 2011

Anne Moen, Stig Kjær Andersen, Jos Aarts, Petter Hurlen (editors)

In this paper we describe a novel social-medical discovery solution, based on an idea of social and medical data unification. Built on foundations of exploratory search technologies, the proposed discovery solution is better tailored for the social-medical discovery task. We then describe its implementation within the IBM Medics system and discuss a sample usecase which demonstrates several new social-medical discovery opportunities.

Recent research has provided a detailed insight into what information cancer patients as a generic group require and we now understand that this requirement changes during the disease episode. This paper will focus on the information needs of adolescent cancer patients as little research has been done in this area and unlike every other group of cancer patients very little improvement in information provision and clinical outcomes for this small but important group of people has occurred over the past 20 years. Adolescents have specialised needs and have for too long been grouped either with young children or adults. This paper describes our current knowledge regarding their special needs and outlines future directions to facilitate equality in information provision for this group.

A literature review has been conducted to gain an overview of which technologies and patient groups have previously been employed in scientific studies with regard to patients reporting symptoms electronically. This paper presents preliminary results from the review, based on the abstracts from relevant publications. The Medline database search identified 974 publications. Of these, 235 (24%) met the inclusion/exclusion criteria. The number of studies has increased heavily over the past two decades. A lot of the studies are small with regard to sample size, but we see that the number of studies increase over time. Cancer and lung diseases are the largest diagnosis groups. Cancer symptom reporting seems to take place inside the healthcare institutions, while lung disease and musculoskeletal disease reporting mainly take place at home via Internet.

Due to the increasing prevalence of adiposity in children numerous schools are introducing prevention programmes. Among these is “Gewaltlos Starksein” (“Being strong without violence”), a project of Hauptschule Sophienstraße Braunschweig, Germany (a general education secondary school for grades 5-10). This study aims to discover possible increases in activity through “Gewaltlos Starksein” where health–enabling technologies play a major role. A prospective intervention study with a span of 1.5 years was designed to measure this increase in activity. Partners in this study were Hauptschule Sophienstraße as the intervention group and Grund- und Hauptschule Pestalozzistraße as control group. Data collection was performed using a multi-sensor device, and questionnaires. Confirmatory data analysis of average metabolic equivalent (METs) yielded no significant results. Exploratory analysis showed interesting results, especially concerning the number of steps during leisure time. Descriptive analysis of questionnaires showed that all children enjoy physical activity. There were differences in sports team participation, open-air games and club affiliation. The study could not prove that the intervention “Gewaltlos Starksein” improves physical activity in children. However, the increased leisure activity step count indicates that “Gewaltlos Starksein” has positive effects on children's behaviour. This should be investigated in a further study in cooperation with psychologists.

Changing dietary habits is one of the most challenging tasks of diabetes self-management. Mobile terminals are increasingly used as platforms for tools to support diet management and health promotion. We present literature describing mobile terminal-based support tools for management of diabetes focused on diet. We also propose a summary of key success factors for designing such tools and discuss recommendations for future research.

This paper explores how technology affects the interaction between chronic obstructive pulmonary disease (COPD) patients and healthcare professionals in a cross-sector tele-rehabilitation programme. The qualitative analysis has shown that a community of rehabilitation can be created despite the presence of long-distance technology. In the tele-rehabilitation programme, the interaction between the COPD patients at home and the healthcare professionals at the clinic has evolved with dialogue as the basis for mutual learning processes and new relationships. Managed properly, rehabilitation at a distance can be both effective and satisfying.

This paper reports on a research trial designed to evaluate the benefits of a health mentoring programme supported with a web and mobile phone based self-monitoring application for enhancing self-efficacy for self-management skills and quality of life for people with CF. This randomised, single-blind controlled trial evaluated two strategies designed to improve self-management behaviour and quality of life. Task-specific self-efficacy was fostered through mentorship and self-monitoring via a mobile phone application. Trial participants were randomised into one of three groups: Control, Mentor-only and Mentor plus mobile phone. Analysis and discussion focus on the experiences of participants through a methodology utilising descriptive statistics and semi-structured interviews. The results highlight the challenges of stimulating self-management behaviours particularly in adolescents and in the evaluation of the role of mobile applications in supporting them.

In this paper, we report on a pilot study conducted to test the usefulness and understandability of definitions in a Consumer Health Dictionary (IVS-CHD). Our two main goals for this study were to evaluate functionality of the dictionary when embedded in electronic health records (EHR) and determine the methodology for our larger-scale project to iteratively develop the IVS-CHD. The hyperlinked IVS-CHD was made available to thoracic surgery patients reading their own EHR. We asked patients to rate definitions on two 5-level Likert items measuring perceived usefulness and understandability. We also captured the terms that patients wanted defined, but that were not included in the IVS-CHD. Preliminary results indicate the types of problems that must be avoided when creating definitions, for example, that patients prefer detailed explanations that include medical outcomes, and that do not use “unfamiliar” terms they must also look up. We also have gained insight into the types of terms that patients want defined from their EHR notes, especially certain abbreviations. Patients further commented on the experience of reading EHR notes directly from the same system used by healthcare personnel and the help strategy of linking the contents to a hyperlinked dictionary.

Patients suffering from heart diseases often face lifelong oral anticoagulant therapy. Traditionally, the patient's general practitioner takes care of the treatment. An alternative management scheme is a self-monitoring setup where the patient monitors and manages the oral treatment himself. Despite international evidence of reduced thrombosis risk and death rate among patients enrolled in self-monitoring, a majority of eligible patients deselect this opportunity. Little is about the causes if this. This study is a pilot assessment of why patients, located in the North Denmark Region, choose not to participate. The study is based on qualitative interviews with two nurses working in a medical practice and two patients participating in conventional anticoagulant therapy. The results of this study seem to suggest that at least some patients feel a lack of information to base their decision regarding self-monitoring or conventional management on and that the knowledge among the health personnel at the medical clinics should be increased.

As in other domains, there has been unprecedented growth in diabetesrelated social media in the past decade. Although there is not yet enough evidence for the clinical benefits of patient-to-patient dialogue using emergent social media, patient empowerment through easier access to information has been proven to foster healthy lifestyles, and to delay or even prevent progression of secondary illnesses. In the design of diabetes-related social media, we need access to personal health data for modelling the core disease-related characteristics of the user. We discuss design aspects of mobile peer support, including acquisition of personal health data, and design artefacts for a healthcare recommender system. We also explore mentoring models as a tool for managing the transient relationships among peers with diabetes. Intermediate results suggest acquiring health data for modelling patients' health status is feasible for implementing a personalized and mobile peer-support system.

Today, the Web is a media with increasing pervasiveness around the world. Its use is constantly growing and the medical field is no exception. With this large amount of information, the problem is no longer about finding information but assessing the credibility of the publishers as well as the relevance and accuracy of the documents retrieved from the web. This problem is particularly relevant in the medical area which has a direct impact on the well-being of citizens and in the Web 2.0 context where information publishing is easier than ever. To address the quality of the medical Internet, the HONcode certification proposed by the Health On the Net Foundation (HON) is certainly the most successful initiative. The aims of this paper are to present certification activity through the HONcode experience and to show that certification is more complex than a simple code of conduct. Therefore, we first present the HONcode, its application and its current evolutions. Following that, we give some quantitative results and describe how the final user can access the certified information.

In this paper we report on findings related to treatment of patient consent in various circumstances and geographic domains; explore transfer of health data between custodians and geo-political entities; and emphasize importance of educating general public about issues related to handling health data. A specific set of questions about consent/legislation and related issues in the Canada, the USA and the EU are addressed in an attempt to answer them systematically. This comparison identifies similarities and differences along a set of dimensions.

This work reflects on the translation of a paper-based information system into an electronic one, taking account of the emotional dimension of material artifacts. A qualitative analysis carried out through semi-structured interviews enabled us to describe laypeople's healthcare practices, and specifically the use of “ pediatric booklets”, which are paper health diaries designed to provide parents with a repository of the most relevant clinical data about their children. Our analysis reveals that parents' use of the booklet does not depend only on the clinical relevance of the information contained in it. Its success rather depends on practices that reshape the booklet's original meaning. In particular, parents use booklets as containers for other clinical records, and they consider them more as objects of affection and symbols of their caring for their children than as clinical tools with instrumental value in themselves. In the discussion we consider the risks of dematerializing health information tools by underestimating the relevance of the emotional side.

The present article is an entirely collaborative effort by two authors. If, however, for academic reasons individual responsibility is to be assigned, Enrico Maria Piras wrote Introduction and Results, Alberto Zanutto wrote Methods and Discussion.

This paper takes a socio-technical perspective to analyze the ongoing practices of making an eHealth infrastructure, namely a web-based communication platform, which aims to improve healthcare delivery in Norway. The platform is planned to support interaction between patients and healthcare providers, patient access to personal health information, and dissemination of health knowledge to the public. The analysis is based on the ‘scales of infrastructure’ concept found in Information Systems research, which shows the complexity of the design, development and implementation process across three scales of activities for achieving durability: institutionalization, organizing work, and technology enactment. The case analysis brings the non-linearity of the ongoing practices to the foreground, enabling a more in-depth understanding of the relationship between technology design and infrastructural work.

The Internet is increasingly being used as a means to search and communicate health information. As the mission of Health on the Net Foundation (HON) is to guide healthcare consumers and professionals to trustworthy online information, we have been interested in seeing the trend of the attitudes towards Internet use for health purposes since 1996. This article presents the results of the 10^th HON survey conducted in July-August 2010 (in English and French). It was hosted on the HON site with links from Facebook and Twitter and from HONcode certified web sites. There were 524 participants coming mainly from France (28%), the UK (18%) and the USA (18%). 65% of participants represented the “general public”, while the remaining 35% were professionals. Information quality remains the main barrier users encounter while looking for health information online; at the same time, 79% believe they critically assess online content. Both patients and physicians consider the Internet to be helpful in facilitating their communication during consultations, although professionals are more sceptic than the general public. These results justify the continuing efforts of HON to raise public awareness regarding online health information and the ethical, quality and transparency issues, and to educate and guide users towards trustworthy health information.

The CareRabbit has been introduced as a technological innovation in the care for children, enabling family and friends to stay in touch while the child is hospitalized. This study addresses influence of this innovation on the wellbeing of the children, and uses the validated KINDL questionnaire, eliciting information from children and parents at the end of hospitalization. A baseline and an experimental measurement are compared. The children in the CareRabbit group scored slightly higher on the KINDL questionnaire than children in the control group. For young children (age 4-7) the difference was large. Initial findings indicate that CareRabbit has a positive influence on wellbeing, although sample size and measured differences limit the support for this conclusion. The measured difference suggests that CareRabbit may be more valuable for younger children.

The rise of cheaper and more powerful mobile devices make them a new and attractive platform for clinical applications. The interaction paradigm and portability of the device facilitates bedside human-machine interactions. The better accessibility to information and decision-support anywhere in the hospital improves the efficiency and the safety of care processes. In this study, we attempt to find out what are the most appropriate Operating System (OS) and Software Development Kit (SDK) to support the development of clinical applications on mobile devices. The Android platform is a Linux-based, open source platform that has many advantages. Two main SDKs are available on this platform: the native Android and the Adobe Flex SDK. Both of them have interesting features, but the latter has been preferred due its portability at comparable performance and ease of development.

Quality indicators (QIs) are increasingly used to summarize quality of care and to give professionals' performance feedback. We have previously developed a continuous multifaceted guideline implementation strategy that integrates computerized decision support with feedback on QIs and benchmarking. This paper focuses on development of QIs, and presents results of a case study in the field of cardiac rehabilitation. We present a modified Rand method that combines results from a literature search and guideline review with knowledge of an expert and patient panel in an extensive rating and consensus procedure. All sources contributed to the final set of 18 QIs for cardiac rehabilitation.

Successful healthcare process design requires active participation of users who are familiar with the cooperative and collaborative nature of healthcare delivery, expressed in terms of healthcare processes. Hence, a reusable, flexible, agile and adaptable training material is needed with the objective to enable users instill their knowledge and expertise in healthcare process management and (re)configuration activities. To this end, social software, such as a wiki, could be used as it supports cooperation and collaboration anytime, anywhere and combined with semantic web technology that enables structuring pieces of information for easy retrieval, reuse and exchange between different systems and tools. In this paper a semantic wiki is presented as a means for developing training material for healthcare providers regarding healthcare process management. The semantic wiki should act as a collective online memory containing training material that is accessible to authorized users, thus enhancing the training process with collaboration and cooperation capabilities. It is proposed that the wiki is stored in a secure virtual private cloud that is accessible from anywhere, be it an excessively open environment, while meeting the requirements of redundancy, high performance and autoscaling.

Personal information management has been proposed as an important enabler for individual empowerment concerning citizens' wellbeing and health information. In the MyWellbeing project in Finland, a strictly citizen-driven concept of “Coper” and related architectural and functional guidelines have been specified. We present a reference architecture and a set of identified application services to support personal wellbeing information management. In addition, the related standards and developments are discussed.

Insulin is the most potent agent for the treatment of diabetes mellitus. However insulin treatment requires frequent evaluation of blood glucose levels and adjustment of the insulin dose. This process is called titration. To guide patients with type 2 diabetes using once-daily long-acting insulin, we have developed a web-based decision support system for insulin self-titration. The purpose of this paper is to provide an overview of the phases of development and the final design of the system. We reviewed the literature, consulted an expert panel, and conducted interviews with patients to elicit system requirements. This revealed four important aspects: the insulin titration algorithm, the handling of hypoglycemic events, telemedicine functionalities, and visiting frequency monitoring. We used these requirements to develop a fully functional system.

The Personal Health Record (PHR) is progressively becoming a fundamental tool to allow people to control their health. User needs, however, impose to design a PHR solution that must offer a great flexibility in terms of managing heterogeneous health data, composing data in higher level concepts and interfacing the PHR with different devices to collect and visualize data. We propose to adopt REST as core of a regional PHR architecture and present a PHR based on this architecture implemented and tested in our Province.