Ebook: Consumer-Centered Computer-Supported Care for Healthy People

The Korean Society of Medical Informatics (KOSMI) is pleased to again host a major event in health informatics, the 9th International Congress on Nursing Informatics, NI2006. This major event, which is held in collaboration with KOSMI-NI, our Nursing Informatics Specialist Group, and with IMIA-NI, the Special Interest Group in Nursing Informatics of the International Medical Informatics Association, builds on our experience in the successful MEDINFO conference held in Seoul in 1998. The host country, Korea, is well known for having the highest level of Information and Communication Technology (ICT) accessibility in the world. Advances in ICT in Korea have lead Korean health care sectors to fully utilize the benefit of ICT for health care.

NI2006 is the premier International congress for nurses and informatics experts working with informatics applications in nursing care, administration, research and education, bringing together the worlds of nursing informatics community. The theme of the congress, “Consumer-Centered Computer-Supported Care for Healthy People” emphasizes the central role of the consumer and the function of information technology in health care. This theme reflects the major challenge in our time, which is developing and using information technology for the improvement of consumer oriented health care.

The Scientific Programme Committee (SPC) was faced with a difficult task in selecting the best submissions. We received over 365 submissions for papers, posters, demonstrations, workshops, panels, and tutorials. Each submission was reviewed by at least two reviewers selected from a panel of more than 80 experts. Scientific reviewer feedback was provided to the authors of each submission, and every effort was made to accommodate the best submissions given the constraints of the conference timetable. This has meant that in some cases, the type of presentation was modified to accommodate to the limited time slots available for each presentation type.

The result of the SPC activity is reflected in the Proceedings and Conference Programme. The printed version of the Proceedings has page limitations, therefore only paper, poster and demonstration presentations are included. The full contents, including all accepted workshops, panels and tutorials, are included in the CD version of the Congress Proceedings. The Congress Proceedings will be indexed, including in MEDLINE, which will include all contents for the printed Proceedings.

The proceedings are an integrated part of NI2006. We would like to thank all those who have made the printed volume and the CD possible, the authors, the Scientific Programme Committee, the Organizing Committee, the reviewers, and the team in Seoul, Mariah Min, Hyunkyoung Ryu, Hyeyoung Kim, Shinyoung Kim and many more.

Hyeoun-Ae Park, Peter Murray, Connie Delaney

Survival of any species depends on adaptation and evolution. In the changing healthcare environment, patients have evolved into consumers but nursing has yet to undergo a corollary evolution in order to survive in what is now a consumer-centric industry. This article examines how and why healthcare has become consumer-centric and what nursing can and must do to remain viable.

One of the world's unanswerable questions is, “How did life begin?” Religion and science have argued about it. Folklore has attempted to make a metaphor of it. Big Bang or Divine Intervention—the truth is, we just do not know. However life began, one thing is clear: It evolved. At least some species did. Many did not. The difference between those that did and those that didn't? The ability to adapt to a changing environment.

Such is the scenario playing out in healthcare and nursing today. Patients adapted to an increasingly cost-focused, information-based environment by evolving into consumers. The challenge nursing faces is adapting to the resultant consumer-centric world. The question: What will it take? The answer: Technology.

New technologies from the new digital era are overcoming temporal, spatial and physical hurdles in the development and realization of individual health profiling and consumer health monitoring devices. Mature wireless and networking technologies promise more accessibility and portability of health data and records, and health monitoring. The increase in convenience and efficiency underlie the technological foundation for development of telehealth systems, which make personal health care available anytime, anywhere. On the one hand, advances in information technology are aiding in the creation of lifelong health records and hence in the tracking and understanding of the health history of individuals, which in turn will help shift the public health care delivery model toward more primary and secondary care and prevention from the current emphasis on curing. On the other, health monitoring devices are also benefiting from technological progress, and are increasingly moving toward more self-assistive, compact and appealing to consumers. However, although most of the necessary hardware and technologies are already mature and widely available, they have yet to be fully exploited for personal health care, and the general public also need to be educated and encouraged to adopt the concepts of individual health profiling and regular health monitoring into their lives. In this regard, the School of Nursing at The Hong Kong Polytechnic University has been working proactively on two fronts. First, a telehealth system has been installed in community-based venues such as clinics, hospitals and, most important, schools and youth centers in order to promote lifelong health profiling for all individuals. Second, the School of Nursing is committed to utilizing advanced technologies for developing more compact and user-friendly consumer health monitoring devices such as non-invasive meters. This is with a view to encourage individuals to take more responsibility for their own health and behavior, which fits in with the Hong Kong government's aim of shifting the burden of public health care provision away from hospitals to community-based primary and secondary care. The ultimate goal of the School of Nursing's efforts in telehealth and consumer health monitoring devices is the wide adoption of home-based telehealth systems that will subsequently spur individual health profiling, which will in turn encourage personal responsibility for improving one's health.

Recent developments in biomedical informatics research have afforded possibilities for great advances in health care delivery. As in most domains, there is a gulf between technologic artifacts and end users, which compromises the culture of safety in the workplace. This necessitates a broadening of disciplinary boundaries to consider cognitive and social factors related to the design and use of technology. The authors argue for a place of prominence for cognitive science in understanding nursing factors associated with patient safety. Cognitive science provides a framework for the analysis and modeling of complex human performance. Studies of clinical cognition can meaningfully inform and shape design, development, and assessment of information systems. Furthermore, they have a decisive impact on whether information technology has a positive influence on human performance and are especially important in understanding and promoting safe practices. These issues are discussed in the context of clinical informatics with a focus on nursing practice.

A complex set of needs–the increased accessibility to and interest in health information, more respected patients' rights, advanced information technologies, and pressure to seek a cost-effective healthcare delivery—introduced the Personal Health Record (PHR). Nursing care, as essential to healthcare, must be represented in a PHR, but few studies have explored the nurses' role in the development and expansion of the PHR. Our ‘IOWA PERSONAL HEALTH RECORD (IowaPHR)’ would be a pioneer to demonstrate how nursing can be integrated in the PHR. IowaPHR is attributed with these innovations: (1) information that embraces main community health concerns; (2) transformation of a standardized nursing language into questions adjusted for consumer vocabulary level; and (3) a user-friendly interface equipped with trending of health conditions and a diary function. The usability of this PHR is validated by experts in terms of content, ease of navigation, time needed to complete tasks, ability to find desired information, and site presentation. This work will provide a way for nursing informatics to make a difference in health informatics.

This qualitative study was the first phase in designing a computer system that provides interactive tailored interventions for management of depressive symptoms in HIV-infected individuals (HIV TIDES) [1]. The purposes of the study were to explore caseworkers' perceptions of the mental health information needs of persons living with HIV/AIDS (PLWHA), barriers of accessing mental health information, and possible solutions to fulfilling PLWHA's mental health information needs. A focus group methodology was used to gather perceptions from six experienced community-based workers who provided direct case management services for PLWHA in East Harlem, New York. Data were classified into four main categories: mental health information needs, information sources for mental health concerns, barriers to accessing mental health information, and need for mental health interventions. The results of this study were used to inform the design of HIV TIDES.

The need to promote consumer informatics in all health care settings is essential. Primary care provides timely opportunities to educate and promote the use of e-health tools and computer literacy for consumers. However, these settings are often the least equipped with technology and informed care providers to educate and promote consumer acceptance and use of technology to promote and maintain health. The purpose of the consumer informatics in primary care project was twofold: 1) to develop a primary health care informatics practice model to improve health care outcomes to targeted communities and 2) promote the use of e-health tools for an identified consumer population. The paper describes a process of faculty and student dyads that combined primary care and informatics expertise to promote consumer informatics in an urban underserved primary care site.

With an increasing number of older adult online users, the Internet has become recognized as an efficient medium to disseminate health information to these individuals. Usability of health Web sites is particularly important for older adults who have unique Web design needs. Although several Web usability questionnaires have been developed for younger adults, there is a lack of such measure for older adults. In this study, based on prior research findings and consultation with usability experts, a 12-item Perceived Health Web Site Usability Questionnaire (PHWSUQ) was developed for older adults. The preliminary reliability and validity of this measure was assessed in a study that tested the usability of three health Web sites employing 10 older adult online users. The findings provided some evidence of internal consistency and construct validity for the PHWSUQ. The major limitation of this study was its small sample size, hence further psychometric testing is needed with larger samples.

In this paper we describe experiences from design of an informatics-based learning resource for patients and relatives. The prototype, REPARERE (learning REsource for PAtients and RElatives during REcovery), aims to support patients and their family recovering from heart surgery in meeting challenges in to daily living post discharge.

Using recovery experiences and patient teaching material, REPARERE includes examples of textual information, video-clips, images and illustrations relevant to the recovery trajectory and a user's digitally represented profile. The development of the prototype focuses on flexibility and usability, tailoring and sequencing resources, and inclusion of recommendations for universal access.

Development of web-based learning resources allows for exploration of ‘just-in-case’ and ‘just-in-time’ strategies to information retrieval and knowledge construction in health and learning trajectories. Findings from the literature, discussions with patients as well as health care providers indicate that unfulfilled information needs in the recovery period are common. Resources like REPARERE would be valuable supplement to facilitate patient learning about symptom management, self-care and coping while recovering.

Health care outcomes are clearly impacted by the ability of clients to participate in their health care. Nurses have always used education to empower their patients. With the advent of the Internet the concept of patient education has been transformed to the much broader concept of consumer informatics. For increasing numbers of clients the Internet has become a primary source of health information and a major factor influencing their knowledge and decisions related to their health. Successful use of the Internet depends on several different levels and types of literacies. This paper explores the interrelations between the concepts of basic literacy, computer literacy, information literacy, health information literacy and health literacy. It demonstrates the need for client assessment tools that are sensitive to each of these literacies and their interrelations. In concludes by challenging consumer informatics specialists to develop these assessment tools as well as teaching tools for empowering consumers using the Internet.

Patient participation in decision making concerning nursing needs is an important aspect of high quality care, of interest for both planning and implementing care. However, patients' perspective on participation in clinical decision making has not been studied extensively and the literature is inconclusive of what roles patients prefer to adopt. The aim was to investigate associations between patient demographics and preferences for participation in clinical decision making and to compare patients and RNs perceptions of the patients' preferences for participation. A cross sectional study including 80 nurse-patient dyads was adopted. The Control Preference scale was used to collect data. The findings showed that younger and more educated patients preferred to be more active in some aspects of decision making than older and less educated patients did. Further, in comparison with RNs inference of patient preferences for participation, patients preferred to be more passive in decision making in relation to nursing needs in general, as well as for physical and psychosocial needs. Differences in perceptions between patients and RNs concerning patient participation could hamper high quality care and need to be addressed.

Exploring the context of use for informatics tools and applications can provide insight into requirements for their design. Historically, photographs have been used by social scientists as a way to study context in complex environments. Using data collected in the study “Advanced technologies for Health@Home” we share how photographs can be used to understand one such complex environment where informatics tools appear, the household.

By capture, categorization, analysis and interpretation of photographs, we developed a richer understanding of information artifacts and the context of these artifacts used to support health information management in the household (HIMH).

Photographs are an underused data source. Appropriately used, photographs can aid in the development of informatics resources that align with and extend current practices of health information management in the household (HIMH). Their use should be investigated further concerning other complex environments within nursing informatics.

The purpose of this web-based study was to explain and predict consumers' acceptance and usage behavior of Internet health information and services. Toward this goal, the Information and Communication Technology Acceptance Model (ICTAM) was developed and tested. Individuals who received a flyer through the LISTSERV of HealthGuide were eligible to participate. The study population was eighteen years old and older who had used Internet health information and services for a minimum of 6 months. For the analyses, SPSS (version 13.0) and AMOS (version 5.0) were employed. More than half of the respondents were women (n=110, 55%). The average age of the respondents was 35.16 years (S.D.=10.07). A majority reported at least some college education (n=126, 63%). All of the observed factors accounted for 75.53% of the total variance explained. The fit indices of the structural model were within an acceptable range: χ²/df=2.38 (χ²=1786.31, df=752); GFI=.71; RMSEA=.08; CFI=.86; NFI=.78. The results of this study provide empirical support for the continued development of ICTAM in the area of health consumers' information and communication technology acceptance.

The Norwegian Nurses Association has developed a strategy for the use and development of terminologies in nursing. The proposal for this strategy is that terminologies are important in developing nursing practice. The goal of the strategy is to contribute to the nursing endeavours in documenting, quality insurance and influencing health policies.

One method of achieving this is to stimulate the use and further development of terminologies, through structured and standardized documentation. The purpose is to inform and educate clinical practice, education, professional development and research. It is a goal that the strategy will also influence health authorities in the choice and decisions of terminologies that will be used for nursing.

The strategy gives an overview of the terminologies that the Norwegian Nurses Association has decide translate and evaluate. In addition, the strategy exemplifies recommendations for status in 2007 for structured documentation and the use of terminologies and how this status should be achieved.

This paper will highlight three areas from the strategy that the Norwegian Nurses Association wishes to focus on:

1. Translations of classifications systems and version control

2. The need for systematic research and evaluation of terminologies in the context of nursing practice and laws in Norway

3. The challenge of educating nurses in the use of terminologies.

Healthcare executives may be unaware of effective uses of evidence-based guidelines within their healthcare system. The primary objective in this research was to design and implement an automated intranet dashboard reporting performance measures for community acquired pneumonia. A secondary objective was to describe how this might increase cooperation and coordination within a healthcare delivery system. Principals of user centered design and information management were used in the construction of the intranet dashboard. Descriptive research approaches were used with a convenience sample of healthcare executives completing a baseline survey measuring satisfaction with receiving reports and cooperation between geographically distributed facilities. After three months of exposure to the dashboard, a follow-up survey was administered. Usage patterns were examined from server log files; qualitative exit interviews were also conducted with six healthcare executives. A functional dashboard was created with limited resources, data quality issues presented as barriers to automation. Descriptive analysis found substantial increases on a number of survey items, suggesting that the dashboard contributes toward increased satisfactio communication and coordination among healthcare executives. Findings should be balanced by the limited rigor in the research design and the web server log files which found few visitations to the dashboard. Qualitative data analysis suggests that current reporting mechanisms are suboptimal for healthcare executives and that one solution may be dashboards.

Children with cancer experience many symptoms and problems that often remain unreported and untreated. We therefore, developed PedsChoice, a support system for pediatric cancer symptom assessment and manage ment to provide children with a “voice,” and assist nur ses and physicians to better address children's sympto ms and problems in patient care. We used participator y design techniques where healthy children joined our design team. During this process we explored the role s healthy children can appropriately play to inform the design of a system for children with cancer and their contributions and limitations as participants in the design process. We found that healthy children can contribute considerably in the role as testers, informers and to some extent as partners. Children have very creative design ideas that can considerably improve the software. However, system development for seriously ill children also requires psychological and pedagogical insights and design and usability expertise. This limits the role children can play as full design partners.

The vast and growing area of informatics presents the single biggest change in how societies grow, work, and live. Strong emphasis is placed on environment, work safety, disease minimization, illness detection, and care interventions. The informatics in these areas is not adequately used to realize the full benefits to society, but using computational intelligence or soft computing techniques, we obtain a closer acceptance of confidence in the application of informatics to improve quality of life. There is a vast array of applications of informatics in society like bioinformatics, genetic detection, medical diagnosis, manufacturing, environmental responsibility, transportation design, etc. By using neural networks and genetic algorithms, reasoning on the data sources can result in emerging nursing informatics patterns where prediction can become more and more accurate in an acuity system that ultimately gives effective therapeutic care and decreased rates of mortality. In this paper, I propose the use of CI techniques to determine crisp data that can be incorporated into decision-making for nursing care.

The present study concerns the clinical decision-making process in a naturalistic context and its relationship to the nurses' abilities of critical thinking, creative thinking and emotional intelligence.

Apart from describing a model of the clinical decision-making process in nursing, the results showed its continuous and interactive nature as well as that different patterns of decisions correspond to distinct patterns of those cognitive abilities.

Despite some limitations, we consider that this study has implications in the caring, administration, education and nursing informatics areas.

Clinical practice guidelines (CPGs) are common tools for clinicians in daily practice. In order to use CPGs effectively at the point of care, representing CPGs into computer-interpretable format is essential. Since computer-interpretable guidelines (CIGs) have been reported to increase clinicians' usage of guidelines and improve patient's outcomes, it is critical to validate health care knowledge translated from CPGs into CIGs. A comprehensive method of developing and evaluating a gold standard for a depression screening CIG was performed and analyzed in this study. GLIF encoding was conducted for a depression screening CPG and 21 clinical scenarios were created based on the encoded depression screening CIG. Two nurse practitioners were recruited to generate initial management for each scenario. Proficiency and efficiency scores were calculated for each scenario. In 13 of 21 scenarios, both experts had proficiency scores of 100%. Proficiency scores were lowest for scenarios that included bipolar disease. Implications of our findings for development of a gold standard are discussed.

The Decision Support System (DSS) of the Veterans Health Administration (VHA) uses available data sources to produce information that supports strategic management and planning. At the same time, the clinical information in the system is useful for measurement of performance and quality of care initiatives. Clinical decision makers can correlate processes of care with outcomes to refine best practices and determine if treatment/monitoring standards are met. The DSS information has also proven to be very useful for health services researchers.

The purpose of this study was to develop and evaluate the online evidence-based nursing practice guideline bank system to support the best evidence-based decision in the clinical and community practice settings.

The main homepage consisted of seven modules for introduction of site, EBN, guideline bank, guideline development, guideline review, related sites, and community.

The major contents in the guidelines were purpose, developer, intended audience, method of development, target population, testing, knowledge components, and evaluation.

Electronic versions of the guidelines were displayed by XML, PDF, and PDA versions.

The system usability were evaluated by general users, guideline developers, and guideline reviewers on the web and the results showed high scores of satisfaction.

This online evidence-based guideline bank system could support nurses' best and cost-effective clinical decision using the sharable standardized guidelines with education module of evidence based nursing.

The purpose of this study was to develop the nursing information system based on the Standardized Nursing Language System for gastric cancer patients according to the framework of the nursing process. This study also tried to evaluate the usability by applying it to the gastric cancer nursing practice. The system was developed based on the System Development Life Cycle. Therefore, it is considered that the gastric cancer nursing information system developed in this study can contribute to the improvement of clinical usability under the nursing process and to the enlargement of the range of nursing records. In addition, the system developed in this study was based on the Standardized Nursing Language System, for effectively controlling data related to gastric cancer nursing. The gastric cancer nursing information system in this study can be applied effectively in the quality control of nursing care, follow-up care and research for the whole nursing field as well as in cancer nursing, and can promote the use of the Standardized Nursing Language System.