Third generation participatory design in health informatics--making user participation applicable to large-scale information system projects

Participatory Design (PD) methods in the field of health informatics have mainly been applied to the development of small-scale systems with homogeneous user groups in local settings. Meanwhile, health service organizations are becoming increasingly large and complex in character, making it necessary to extend the scope of the systems that are used for managing data, information and knowledge. This study reports participatory action research on the development of a PD framework for large-scale system design. The research was conducted in a public health informatics project aimed at developing a system for 175,000 users. A renewed PD framework was developed in response to six major limitations experienced to be associated with the existing methods. The resulting framework preserves the theoretical grounding, but extends the toolbox to suit applications in networked health service organizations. Future research should involve evaluations of the framework in other health service settings where comprehensive HISs are developed.     

SARS and population health technology

The recent global outbreak of SARS (severe acute respiratory syndrome) provides an opportunity to study the use and impact of public health informatics and population health technology to detect and fight a global epidemic. Population health technology is the umbrella term for technology applications that have a population focus and the potential to improve public health. This includes the Internet, but also other technologies such as wireless devices, mobile phones, smart appliances, or smart homes. In the context of an outbreak or bioterrorism attack, such technologies may help to gather intelligence and detect diseases early, and communicate and exchange information electronically worldwide. Some of the technologies brought forward during the SARS epidemic may have been primarily motivated by marketing efforts, or were more directed towards reassuring people that "something is being done," ie, fighting an "epidemic of fear." To understand "fear epidemiology" is important because early warning systems monitoring data from a large number of people may not be able to discriminate between a biological epidemic and an epidemic of fear. The need for critical evaluation of all of these technologies is stressed.     

Education and training in health informatics: the IT-EDUCTRA project

In this contribution both the EDUCTRA project of the European Advanced Informatics in Medicine Programme and the IT-EDUCTRA project of the Telematics Applications Programme (Health Sector) are described. EDUCTRA had as aim to investigate which gaps in knowledge health professionals have with respect to health informatics and to suggest ways to remedy this. It was assumed that health professionals had a basic understanding of health informatics and that additional educational material only had to cover the knowledge necessary for appreciating the new products coming from the AIM programme. A state-of-the-art survey revealed that the knowledge of health professionals with respect to health informatics was deplorable. Guidelines for curricula were therefore proposed to enable potential teachers to design courses. IT-EDUCTRA is a continuation of the EDUCTRA project. It has as aim to create learning materials covering a broad area of health informatics.     

Applying Weick's model of organizing to health care and health promotion: Highlighting the central role of health communication

Objective

Communication is a crucial process in the effective delivery of health care services and the promotion of public health. However, there are often tremendous complexities in using communication effectively to provide the best health care, direct the adoption of health promoting behaviors, and implement evidence-based public health policies and practices. This article describes Weick's model of organizing as a powerful theory of social organizing that can help increase understanding of the communication demands of health care and health promotion. The article identifies relevant applications from the model for health communication research and practice.

Conclusion

Weick's model of organizing is a relevant and heuristic theoretical perspective for guiding health communication research and practice. There are many potential applications of this model illustrating the complexities of effective communication in health care and health promotion.

Practice implications

Weick's model of organizing can be used as a template for guiding both research and practice in health care and health promotion. The model illustrates the important roles that communication performs in enabling health care consumers and providers to make sense of the complexities of modern health care and health promotion, select the best strategies for responding effectively to complex health care and health promotion situations, and retain relevant information (develop organizational intelligence) for guiding future responses to complex health care and health promotion challenges.     

Hypothesis generation using network structures on community health center cancer-screening performance

Research objectives: Nationally sponsored cancer-care quality-improvement efforts have been deployed in community health centers to increase breast, cervical, and colorectal cancer-screening rates among vulnerable populations. Despite several immediate and short-term gains, screening rates remain below national benchmark objectives. Overall improvement has been both difficult to sustain over time in some organizational settings and/or challenging to diffuse to other settings as repeatable best practices. Reasons for this include facility-level changes, which typically occur in dynamic organizational environments that are complex, adaptive, and unpredictable. This study seeks to understand the factors that shape community health center facility-level cancer-screening performance over time. This study applies a computational-modeling approach, combining principles of health-services research, health informatics, network theory, and systems science. Methods: To investigate the roles of knowledge acquisition, retention, and sharing within the setting of the community health center and to examine their effects on the relationship between clinical decision support capabilities and improvement in cancer-screening rate improvement, we employed Construct-TM to create simulated community health centers using previously collected point-in-time survey data. Construct-TM is a multi-agent model of network evolution. Because social, knowledge, and belief networks co-evolve, groups and organizations are treated as complex systems to capture the variability of human and organizational factors. In Construct-TM, individuals and groups interact by communicating, learning, and making decisions in a continuous cycle. Data from the survey was used to differentiate high-performing simulated community health centers from low-performing ones based on computer-based decision support usage and self-reported cancer-screening improvement. Results: This virtual experiment revealed that patterns of overall network symmetry, agent cohesion, and connectedness varied by community health center performance level. Visual assessment of both the agent-to-agent knowledge sharing network and agent-to-resource knowledge use network diagrams demonstrated that community health centers labeled as high performers typically showed higher levels of collaboration and cohesiveness among agent classes, faster knowledge-absorption rates, and fewer agents that were unconnected to key knowledge resources. Conclusions and research implications: Using the point-in-time survey data outlining community health center cancer-screening practices, our computational model successfully distinguished between high and low performers. Results indicated that high-performance environments displayed distinctive network characteristics in patterns of interaction among agents, as well as in the access and utilization of key knowledge resources. Our study demonstrated how non-network-specific data obtained from a point-in-time survey can be employed to forecast community health center performance over time, thereby enhancing the sustainability of long-term strategic-improvement efforts. Our results revealed a strategic profile for community health center cancer-screening improvement via simulation over a projected 10-year period. The use of computational modeling allows additional inferential knowledge to be drawn from existing data when examining organizational performance in increasingly complex environments.     

Information and redundancy: key concepts in understanding the genetic control of health and intelligence.

A model is proposed in which information from the environment is analysed by complex biological decision-making systems which are highly redundant. A correct response is intelligent behaviour which preserves health; incorrect responses lead to disease. Mutations in genes which code for the redundant systems will accumulate in the genome and impair decision-making. The number of mutant genes will depend upon a balance between the new mutation rate per generation and systems of elimination based on synergistic interaction in redundant systems. This leads to a polygenic pattern of inheritance for intelligence and the common diseases. The model also gives a simple explanation for some of the hitherto puzzling aspects of work on the genetic basis of intelligence including the recorded rise in IQ this century. There is a prediction that health, intelligence and socio-economic position will be correlated generating a health differential in the social hierarchy. Furthermore, highly competitive societies will place those least able to cope in the harshest environment and this will impair health overall. The model points to a need for population monitoring of somatic mutation in order to preserve the health and intelligence of future generations.     

Health equity in the implementation of genomics and precision medicine: A public health imperative

Recent reviews have emphasized the need for a health equity agenda in genomics research. To ensure that genomic discoveries can lead to improved health outcomes for all segments of the population, a health equity agenda needs to go beyond research studies. Advances in genomics and precision medicine have led to an increasing number of evidence-based applications that can reduce morbidity and mortality for millions of people (tier 1). Studies have shown lower implementation rates for selected diseases with tier 1 applications (familial hypercholesterolemia, Lynch syndrome, hereditary breast and ovarian cancer) among racial and ethnic minority groups, rural communities, uninsured or underinsured people, and those with lower education and income. We make the case that a public health agenda is needed to address disparities in implementation of genomics and precision medicine. Public health actions can be centered on population-specific needs and outcomes assessment, policy and evidence development, and assurance of delivery of effective and ethical interventions. Crucial public health activities also include engaging communities, building coalitions, improving genetic health literacy, and building a diverse workforce. Without concerted public health action, further advances in genomics with potentially broad applications could lead to further widening of health disparities in the next decade.     

Health informatics and the delivery of care to older people

In the light of an aging society, effective delivery of healthcare will be more dependent on different technological solutions supporting the decentralisation of healthcare, higher patient involvement and increased societal demands. The aim of this article is therefore, to describe the role of health informatics in the care of elderly people and to give an overview of the state of the art in this field. Based on a review of the existing scientific literature, 29 review articles from the last 15 years and 119 original articles from the last 5 years were selected and further analysed. Results show that review articles cover the fields of information technology in the home environment, integrated health information systems, public health systems, consumer health informatics and non-technology oriented topics such as nutrition, physical behaviour, medication and the aging process in general. Articles presenting original data can be divided into 5 major clusters: information systems and decision support, consumer health informatics, emerging technologies, home telehealth, and informatics methods. Results show that health informatics in elderly care is an expanding field of interest but we still do lack knowledge about the elderly person's needs of technology and how it should best be designed. Surprisingly, few studies cover gender differences related to technology use. Further cross-disciplinary research is needed that relates informatics and technology to different stages of the aging process and that evaluates the effects of technical solutions.     

Using evidence-based internet interventions to reduce health disparities worldwide

Health disparities are a persistent problem worldwide. A major obstacle to reducing health disparities is reliance on "consumable interventions," that is, interventions that, once used, cannot be used again. To reduce health disparities, interventions are required that can be used again and again without losing their therapeutic power, that can reach people even if local health care systems do not provide them with needed health care, and that can be shared globally without taking resources away from the populations where the interventions were developed. This paper presents the argument that automated self-help evidence-based Internet interventions meet the above criteria and can contribute to the reduction of health disparities worldwide. Proof-of-concept studies show that evidence-based Internet interventions can reach hundreds of thousands of people worldwide and could be used in public sector settings to augment existing offerings and provide services not currently available (such as prevention interventions). This paper presents a framework for systematically filling in a matrix composed of columns representing common health problems and rows representing languages. To bring the benefits of evidence-based Internet interventions to the underserved, public sector clinics should establish eHealth resource centers, through which patients could be screened online for common disorders and provided with evidence-based Internet intervention services not currently available at the clinics. These resources should be available in the patients' languages, in formats that do not require literacy, and that can be accessed with mobile devices. Such evidence-based Internet interventions should then be shared with public sector clinics as well as individuals anywhere in the world. Finally, this paper addresses sustainability and describes a continuum of evidence-based Internet interventions to share nationally and across the world. This approach to expanding health service delivery will significantly contribute to a reduction of health disparities worldwide, adding to the often-quoted slogan, "Think globally, act locally," a third line: "Share globally."     

Tailored interactive multimedia computer programs to reduce health disparities: opportunities and challenges

Objective

To review the theory and research evidence suggesting that tailored interactive multimedia computer programs (IMCPs) aimed at optimizing patient health behaviors could lessen socio-demographic health disparities.

Methods

Selective critical review of research regarding IMCPs tailored to psychological mediators of behavior and their effects on health behavior and outcomes among socio-demographically disadvantaged patients.

Results

Tailored IMCPs can address patient factors (e.g. language barriers, low self-efficacy) and buffer provider (e.g. cognitive bias) and health system (e.g. office visit time constraints) factors that contribute to poor provider–patient communication and, thereby, suboptimal health behaviors. Research indicates disadvantaged individuals’ interactions with providers are disproportionately affected by such factors, and that their behaviors respond favorably to tailored information, thus suggesting tailored IMCPs could mitigate disparities. However, no randomized controlled trials (RCTs) have examined this question. The optimal design and deployment of tailored IMCPs for disadvantaged patients also requires further study.

Conclusion

Preliminary research suggests tailored IMCPs have the potential to reduce health disparities. RCTs designed expressly to examine this issue are warranted.

Practice implications

Many socio-demographic health disparities exist, and there is a dearth of proven disparity-reducing interventions. Thus, if tailored IMCPs were shown to lessen disparities, the public health implications would be considerable.     

Cognitive engineering and health informatics: Applications and intersections

Cognitive engineering is an applied field with roots in both cognitive science and engineering that has been used to support design of information displays, decision support, human-automation interaction, and training in numerous high risk domains ranging from nuclear power plant control to transportation and defense systems. Cognitive engineering provides a set of structured, analytic methods for data collection and analysis that intersect with and complement methods of Cognitive Informatics. These methods support discovery of aspects of the work that make performance challenging, as well as the knowledge, skills, and strategies that experts use to meet those challenges. Importantly, cognitive engineering methods provide novel representations that highlight the inherent complexities of the work domain and traceable links between the results of cognitive analyses and actionable design requirements. This article provides an overview of relevant cognitive engineering methods, and illustrates how they have been applied to the design of health information technology (HIT) systems. Additionally, although cognitive engineering methods have been applied in the design of user-centered informatics systems, methods drawn from informatics are not typically incorporated into a cognitive engineering analysis. This article presents a discussion regarding ways in which data-rich methods can inform cognitive engineering.     

An investigation into health informatics and related standards in China

OBJECTIVE: To describe the current status of and future plans for health informatics and related standards in China and analyze the problems raised in the process of standardization for health informatics. METHODS: Data were collected through investigation and interviews, complemented by a comprehensive review of relevant literatures and regulations/law documents about health informatics and related standards in China. RESULTS: Health informatics has been greatly developed in China. Significant resources were committed to construct and improve the health information system. Approximately 35-40% of hospitals have constructed hospital information system. Over 80% of medical organizations above the county/district level, 27% of town level hospitals and all CDC above the county/district level can transmit real-time epidemic situation reporting through public health information system. However, lack of standards became a bottleneck to utilize and improve health informatics. China has adopted some vocabulary, classification, coding standards and message standards. Moreover, several national standardization actions for health informatics have been taken. In the process of standardization, the main barriers consist of financial, technical, cultural and language problems, legal and ethical concerns and others. CONCLUSIONS: Informatics has the potential to play an important role in China's healthcare reform process and standards are the basis for the information sharing and interoperability. Governments and partners of health informatics have realized the importance of standards and taken the initiatives in trying to solve the problem of lacking standards, but much work still needs to be done.     

Scenarios,personas and user stories: User-centered evidence-based design representations of communicable disease investigations

PurposeDespite years of effort and millions of dollars spent to create unified electronic communicable disease reporting systems, the goal remains elusive. A major barrier has been a lack of understanding by system designers of communicable disease (CD) work and the public health workers who perform this work. This study reports on the application of user-centered design representations, traditionally used for improving interface design, to translate the complex CD work identified through ethnographic studies to guide designers and developers of CD systems. The purpose of this work is to: (1) better understand public health practitioners and their information workflow with respect to CD monitoring and control at a local health agency, and (2) to develop evidence-based design representations that model this CD work to inform the design of future disease surveillance systems.MethodsWe performed extensive onsite semi-structured interviews, targeted work shadowing and a focus group to characterize local health agency CD workflow. Informed by principles of design ethnography and user-centered design we created persona, scenarios and user stories to accurately represent the user to system designers.ResultsWe sought to convey to designers the key findings from ethnographic studies: (1) public health CD work is mobile and episodic, in contrast to current CD reporting systems, which are stationary and fixed, (2) health agency efforts are focused on CD investigation and response rather than reporting and (3) current CD information systems must conform to public health workflow to ensure their usefulness. In an effort to illustrate our findings to designers, we developed three contemporary design-support representations: persona, scenario, and user story.ConclusionsThrough application of user-centered design principles, we were able to create design representations that illustrate complex public health communicable disease workflow and key user characteristics to inform the design of CD information systems for public health.     

Visions and strategies to improve evaluation of health information systems. Reflections and lessons based on the HIS-EVAL workshop in Innsbruck

BACKGROUND: Health care is entering the Information Society. It is evident that the use of modern information and communication technology offers tremendous opportunities to improve health care. However, there are also hazards associated with information technology in health care. Evaluation is a means to assess the quality, value, effects and impacts of information technology and applications in the health care environment, to improve health information applications and to enable the emergence of an evidence-based health informatics profession and practice. OBJECTIVE: In order to identify and address the frequent problems of getting evaluation understood and recognised, to promote transdisciplinary exchange within evaluation research, and to promote European cooperation, the Exploratory Workshop on "New Approaches to the Systematic Evaluation of Health Information Systems" (HIS-EVAL) was organized by the University for Health Sciences, Medical Informatics and Technology (UMIT), Innsbruck, Austria, in April 2003 with sponsorship from the European Science Foundation (ESF). Methods: The overall program was structured in three main parts: (a). discussion of problems and barriers to evaluation; (b). defining our visions and strategies with regard to evaluation of health information systems; and (c). organizing short-term and long-term activities to reach those visions and strategies. RESULTS: The workshop participants agreed on the Declaration of Innsbruck (see ), comprising four observations and 12 recommendations with regard to evaluation of health information systems. Future activities comprise European networking as well as the development of guidelines and standards for evaluation studies. CONCLUSION: The HIS-EVAL workshop was intended to be the starting point for setting up a network of European scientists working on evaluation of health information systems, to obtain synergy effects by combining the research traditions from different evaluation fields, leading to a new dimension and collaboration on further research on information systems' evaluation.     

Facilitating biomedical researchers’ interrogation of electronic health record data: Ideas from outside of biomedical informatics

Electronic health records (EHR) are a vital data resource for research uses, including cohort identification, phenotyping, pharmacovigilance, and public health surveillance. To realize the promise of EHR data for accelerating clinical research, it is imperative to enable efficient and autonomous EHR data interrogation by end users such as biomedical researchers. This paper surveys state-of-art approaches and key methodological considerations to this purpose. We adapted a previously published conceptual framework for interactive information retrieval, which defines three entities: user, channel, and source, by elaborating on channels for query formulation in the context of facilitating end users to interrogate EHR data. We show the current progress in biomedical informatics mainly lies in support for query execution and information modeling, primarily due to emphases on infrastructure development for data integration and data access via self-service query tools, but has neglected user support needed during iteratively query formulation processes, which can be costly and error-prone. In contrast, the information science literature has offered elaborate theories and methods for user modeling and query formulation support. The two bodies of literature are complementary, implying opportunities for cross-disciplinary idea exchange. On this basis, we outline the directions for future informatics research to improve our understanding of user needs and requirements for facilitating autonomous interrogation of EHR data by biomedical researchers. We suggest that cross-disciplinary translational research between biomedical informatics and information science can benefit our research in facilitating efficient data access in life sciences.     

International Master Classes in health informatics

Master Classes arose within the performing arts and are now being offered in system sciences. The IPhiE group of faculty from six universities in Europe and the United States has offered Master Classes in health informatics to provide an integrative forum for honors students. Featured are international views of health systems, varied opportunities for student interaction and promotion of informatics professionalism. Five years of experience indicate the success of this concept and suggest changes that will be considered for the future.     

The accelerated aging phenotype: The role of race and social determinants of health on aging

The pursuit to discover the fundamental biology and mechanisms of aging within the context of the physical and social environment is critical to designing interventions to prevent and treat its complex phenotypes. Aging research is critically linked to understanding health disparities because these inequities shape minority aging, which may proceed on a different trajectory than the overall population. Health disparities are characteristically seen in commonly occurring age-associated diseases such as cardiovascular and cerebrovascular disease as well as diabetes mellitus and cancer. The early appearance and increased severity of age-associated disease among African American and low socioeconomic status (SES) individuals suggests that the factors contributing to the emergence of health disparities may also induce a phenotype of ‘premature aging’ or ‘accelerated aging’ or ‘weathering’. In marginalized and low SES populations with high rates of early onset age-associated disease the interaction of biologic, psychosocial, socioeconomic and environmental factors may result in a phenotype of accelerated aging biologically similar to premature aging syndromes with increased susceptibility to oxidative stress, premature accumulation of oxidative DNA damage, defects in DNA repair and higher levels of biomarkers of oxidative stress and inflammation. Health disparities, therefore, may be the end product of this complex interaction in populations at high risk. This review will examine the factors that drive both health disparities and the accelerated aging phenotype that ultimately contributes to premature mortality.     

Skill needs for nurses in their role as health informatics professionals: a survey in the context of global health informatics education

In the process of developing global health informatics education, a common understanding of educational outcomes is required. Therefore, an educational framework for health informatics professionals is desirable to support student mobility, trans-national and borderless education. Nurses form a significant part of the health workforce and need to be properly educated for their roles in health informatics. To ascertain their perceptions of needs and priorities, we developed a web-based questionnaire and surveyed Australian nurses on the preferred knowledge/skills set for health informatics professionals. Among others, the questionnaire is based on the International Medical Informatics Association's (IMIA) set of recommendations on education and IMIA's scientific map. Benner's five levels of competencies were applied to measure the degree of competency required for each skill/knowledge. Altogether, 82 Australian nurses completed the questionnaire. The nurses' perceived degree of competency required for a total of 74 specific skills and knowledge in five skill categories is presented in this paper as well as the overall results for each of the five categories. Further, significant differences between the nurses' primary roles and primary interest in health informatics are discussed. The development of a comprehensive health informatics education framework needs to take into account nurses as well as other health professionals. Repeating the survey in other countries and for various professions is essential to develop an international educational framework.     

The future of health informatics.

Whatever a future vision for health informatics entails, it must take into account the evolving nature of the field, a growing trend towards primary and preventive care and the explosive growth in global networking as exemplified by the Internet. While, historically, storage and retrieval of data has been the main target for information systems development, the need to capture knowledge itself is becoming the focus for development. In parallel, education in health informatics for tomorrow's healthcare professionals is now essential. The Asia Pacific Association for Medical Informatics (APAMI) is a regional group of the International Medical Informatics Association (IMIA). While the newest of the IMIA regional organizations, its growth and activities in the Asia Pacific region aim to advance health informatics. Its triennial conferences act as a means of promoting and monitoring the growth of our field in this region, APAMI itself is a part of the future of health informatics.     

Individualization, globalization and health--about sustainable information technologies and the aim of medical informatics

This paper discusses aspects of information technologies for health care, in particular on transinstitutional health information systems (HIS) and on health-enabling technologies, with some consequences for the aim of medical informatics. It is argued that with the extended range of health information systems and the perspective of having adequate transinstitutional HIS architectures, a substantial contribution can be made to better patient-centered care, with possibilities ranging from regional, national to even global care. It is also argued that in applying health-enabling technologies, using ubiquitous, pervasive computing environments and ambient intelligence approaches, we can expect that in addition care will become more specific and tailored for the individual, and that we can achieve better personalized care. In developing health care systems towards transinstitutional HIS and health-enabling technologies, the aim of medical informatics, to contribute to the progress of the sciences and to high-quality, efficient, and affordable health care that does justice to the individual and to society, may be extended to also contributing to self-determined and self-sufficient (autonomous) life. Reference is made and examples are given from the Yearbook of Medical Informatics of the International Medical Informatics Association (IMIA) and from the work of Professor Jochen Moehr.