bluuebunny/crossref_metadata_2025 huggingface dataset:
Weekly Pattern for Online Information Seeking on HIV – A Multi-Language Study
Authors: Gabarron Elia  , Lau Annie Y.S.  , Wynn Rolf
Published: February 2025

Studies have demonstrated that there are weekly patterns of information-seeking activities on sexual health topics in some selected languages. However, it is not known if this weekly pattern is found across the ten most commonly-used languages on the Internet, and whether international public events might have an impact on these information-seeking patterns. The objective of this study is to examine sexual health information-seeking patterns for searches performed in several languages, and also to analyze the potential impact of public events on these information-seeking rates. We extracted the number of hits on the HIV article on Wikipedia for the ten most used languages on the Internet for all of the year 2015. The results confirm the existence of a weekly pattern for the searches performed in English, Spanish, Portuguese, Japanese, Russian, French, and German. But the weekly pattern was not found for searches in Mandarin Chinese, Arabic, and Malay. The number of HIV queries increased significantly during two public events, the World AIDS Day, and the announcement regarding the HIV-positive condition of the celebrity actor Charlie Sheen. The existence of higher peaks in searching rates at the beginning of the week for some languages, and the increase in queries related to public events could represent valuable opportunities for public campaigns promoting sexual health.
Lay Crowd-Sourced Expertise (LCE) and Its Influence on the New Role of Patients: Ethical and Societal Issues
Authors: Lamas Eugenia  , Salinas Rodrigo  , Ferrer Marcela  , Bousquet Cedric  , Vuillaume Dominique
Published: February 2025

The emergence of social media on the Internet allows patients to discuss about their chronic diseases within online communities sharing common interests. This allows patients to gather other patients' experience, and gain new knowledge that is usually not shared by healthcare professionals. In this context, further studies are required on the actual impact of the use of social networks on the quality of life of patients participating in these online communities, focusing on the evolving role and impact of Lay Crowdsourced expertise (LCE) in improving disease management and control. We present a study on a large number of posts from social networks of different online communities. This study allowed us to choose four pathologies, with distinctive characteristics relevant for our future analysis, and to define the themes that will be covered in future work by online questionnaires. The analysis of responses from patients, who volunteer to participate, will help us in exploring how interactions between patients, on these online communities, may help them to gain useful information for managing their conditions and improving their quality of life. Furthermore, we will identify new ethical issues that arise in the sharing of health data.
Towards a Personal Health Record System for the Assesment and Monitoring of Sedentary Behavior in Indoor Locations
Authors: Ceron Jesus D.  , Lopez Diego M.
Published: February 2025

Background: Sedentary behavior has been associated to the development of noncommunicable diseases (NCD) such as cardiovascular diseases (CVD), type 2 diabetes, and cancer. Accelerometers and inclinometers have been used to estimate sedentary behaviors, however a major limitation is that these devices do not provide contextual information such as the activity performed, e.g., TV viewing, sitting at work, driving, etc.
Educating Students About Standardisation Relating to Universal Design
Authors: Darzentas Jenny
Published: February 2025

Standardisation education is rarely taught to students in the design disciplines in academic settings, and consequently there is not much evidence about best practices. This paper examines this situation, and elaborates on some of the possible reasons for this situation. Further, it gives an example of how students may be instructed and encouraged to further their interests in standards and the standardization-making process as a means for increasing Universal Design in practice.
Universal Design and Continuing Professional Development for Architects: An Irish Case Study
Authors: Shea Eoghan C.O.  , Basnak Megan  , Bucholz Merritt  , Steinfeld Edward
Published: February 2025

The Tomar Resolution urged that all occupations working in the built environment be educated in the principles and measures of Universal Design in order to facilitate all people playing a full role in society. For Architects and Architectural Technologists, under-graduate education will continue to have a major role to play. At the same time in the Republic of Ireland, and in an ever-growing number of other jurisdictions, Continuous Professional Development (CPD) is a requirement for all Architects and Architectural Technologists and can significantly affect knowledge, skill and competence in a number of subjects including Universal Design. This paper looks at the results of a recent survey of Architects and Architectural Technologists practising in Ireland, architectural educators, and client bodies that sought to assess the following:
Interactive Universal Design Kiosks: Explanations About Social Inclusion Features in Architectural Design
Authors: Guimarães Marcelo Pinto  , Picceli Angélica Fátima Baldin  , Sabino Paulo Roberto
Published: February 2025

This paper details a set of self-supporting and illuminated panels that work together but independently in order to emphasize the explanation of building features and activities that are based on Universal Design guidelines. The exhibition is based on two structures that are arranged in semi-circles (A and B). They are integrated to form a carpeted path where the visitor will be gradually exposed to the concepts related to the principles of Universal Design. Following the sequence of three-dimensional objects and swivelling box elements that support the tactile information on the subject, it is expected that visitors become familiar with each of the principles being demonstrated. Operated by a control system consisting of keys with colour signage, textures and high relief, the panel on the control table allows the user to choose information about paired relationships between some of seven principles contained in printed images about the architectural design on the set of panels. The effectiveness of the composition can be verified by the time people remain enough to hear, see and touch the kiosks for all the information, or by successive visits users make to the setting.
Ensuring Universal Access to Eye Health in Urban Slums in the Global South: The Case of Bhopal (India)
Authors: Pregel Andrea  , Vaughan Gough Tracy  , Jolley Emma  , Buttan Sandeep  , Bhambal Archana
Published: February 2025

Sightsavers is an international organisation working with partners in over 30 countries to eliminate avoidable blindness and help people with disabilities participate more fully in society. In the context of its Urban Eye Health Programme in Bhopal (India), the organisation launched a pilot approach aimed at developing an Inclusive Eye Health (IEH) model and IEH Minimum Standards. Accessibility audits were conducted in a tertiary eye hospital and four primary vision centres located within urban slums, addressing the accessibility of physical infrastructures, communication and service provision. The collection and analysis of disaggregated data inform the inclusion strategy and provide a baseline to measure the impact of service provision. Trainings of eye health staff and sensitisation of decision makers on accessibility, Universal Design, disability and gender inclusion are organised on a regular basis. A referral network is being built to ensure participation of women, people with disabilities and other marginalised groups, explore barriers at demand level, and guarantee wider access to eye care in the community. Finally, advocacy interventions will be developed to raise awareness in the community and mainstream disability and gender inclusion within the public health sector. Founded on principles of Universal Design, accessibility and participation, and in line with international human rights treaties, Agenda 2030 and the Sustainable Development Goals (SDGs), Sightsavers' IEH model ultimately aims to develop a sustainable, scalable and universally accessible system-strengthening approach, capable of ensuring more inclusive services to people with disabilities, women and other marginalised groups, and designed to more effectively meet the health needs of the entire population.
Energy Efficiency and Universal Design in Home Renovations – A Comparative Review
Authors: Kapedani Ermal  , Herssens Jasmien  , Verbeeck Griet
Published: February 2025

Policy and societal objectives indicate a large need for housing renovations that both accommodate lifelong living and significantly increase energy efficiency. However, these two areas of research are not yet examined in conjunction and this paper hypothesizes this as a missed opportunity to create better renovation concepts. The paper outlines a comparative review on research in Energy Efficiency and Universal Design in order to find the similarities and differences in both depth and breadth of knowledge. Scientific literature in the two fields reveals a disparate depth of knowledge in areas of theory, research approach, and degree of implementation in society. Universal Design and Energy Efficiency are part of a trajectory of expanding scope towards greater sustainability and, although social urgency has been a driver of the research intensity and approach in both fields, in energy efficiency there is an engineering, problem solving approach while Universal Design has a more sociological, user-focused one. These different approaches are reflected in the way home owners in Energy Efficiency research are viewed as consumers and decision makers whose drivers are studied, while Universal Design treats home owners as informants in the design process and studies their needs. There is an inherent difficulty in directly merging Universal Design and Energy Efficiency at a conceptual level because Energy Efficiency is understood as a set of measures, i.e. a product, while Universal Design is part of a (design) process. The conceptual difference is apparent in their implementation as well. Internationally energy efficiency in housing has been largely imposed through legislation, while legislation directly mandating Universal Design is either non-existent or it has an explicit focus on accessibility. However, Energy Efficiency and Universal Design can be complementary concepts and, even though it is more complex than expected, the combination offers possibilities to advance knowledge in both fields.
Colour Coding of Maps for Colour Deficient Observers
Authors: Røise Anne Kari  , Kvitle Anne Kristin  , Green Phil
Published: February 2025

We evaluate the colour coding of a web map traffic information service based on profiles simulating colour vision deficiencies. Based on these simulations and principles for universal design, we propose adjustments of the existing colours creating more readable maps for the colour vision deficient observers.
Planning and Measuring Luminance Contrast in Staircases
Authors: Houck Leif D.  , Gundersen Kristoffer  , Strengen Ola
Published: February 2025

Norwegian legislation has requirements concerning luminance contrast for different elements in staircases. This paper investigates how architects work to meet the requirements, how to measure the actual built luminance contrasts and finally 21 staircases are measured using two different methods. The results show that some architects do not reflect on luminance contrasts at all, some use their “experience” and some try to measure the reflectance value of different materials during planning. The investigations also reveal that there is not any official predefined way to control luminance contrast, and this investigation shows that different approaches will give different results. To perform the measuring of the built staircases, it has been necessary to develop a defined measuring method. The results of the measuring generally shows that only a few of the staircases studied fully meet the legislation requirements.
A Universal Design Method for Reflecting Physical Characteristics Variability: Case Study of a Bicycle Frame
Authors: Shimada Masato  , Suzuki Wataru  , Yamada Shuho  , Inoue Masato
Published: February 2025

To achieve a Universal Design, designers must consider diverse users' physical and functional requirements for their products. However, satisfying these requirements and obtaining the information which is necessary for designing a universal product is very difficult. Therefore, we propose a new design method based on the concept of set-based design to solve these issues. This paper discusses the suitability of proposed design method by applying bicycle frame design problem.
Norway's ICT Accessibility Legislation, Methods and Indicators
Authors: Rygg Malin  , Rømen Dagfinn  , Sterri Brynhild Runa
Published: February 2025

This paper gives an overview of the Norwegian legislation on Universal Design of information and communication technology (ICT) and how the Norwegian Authority for Universal Design of ICT works to enforce and achieve the goals behind the legislation. The Authority uses indicators to check websites for compliance with the regulations. This paper describes the rationale and intended use for the indicators and how they are used for both supervision and benchmarks as well as a way of gathering data to give an overview of the current state of Universal Design of websites in Norway.
Lithuanian Dependency Treebank ALKSNIS
Authors: Bielinskienė Agnė  , Boizou Loïc  , Kovalevskaitė Jolanta  , Rimkutė Erika
Published: February 2025

This paper aims to describe the on-going work on creation of the Lithuanian syntactically annotated corpus ALKSNIS focusing on its structure, morphological and syntactic annotation principles. The corpus is scheduled to be completed at the end of 2016, and it should reach about 2350 sentences from texts of various genres. ALKSNIS is based on a dependency model. The corpus is provided in two formats: PML (Prague Markup Language), as a core format, and PAULA XML. The compilation of the list of abbreviations for syntactic labels and collecting of the information about the presentation of the syntactic relations and dependences were based on the experience (with some changes) of Czech researchers [1]. At present, 18 main syntactic labels (excluding variants) are used in ALKSNIS.
Passive RFID Localisation Framework in Smart Homes Healthcare Settings
Authors: Alsinglawi Belal  , Liu Tony  , Nguyen Quang Vinh  , Gunawardana Upul  , Maeder Anthony  , Simoff Simeon
Published: February 2025

In recent years, Smart Homes have become a solution to benefit impaired individuals and elderly in their daily life settings. In healthcare applications, pervasive technologies have enabled the practicality of personal monitoring using Indoor positioning technologies. Radio-Frequency Identification (RFID) is a promising technology, which is useful for non-invasive tracking of activities of daily living. Many implementations have focused on using battery-enabled tags like in RFID active tags, which require frequent maintenance and they are costly. Other systems can use wearable sensors requiring individuals to wear tags which may be inappropriate for elders. Successful implementations of a tracking system are dependent on multiple considerations beyond the physical performance of the solution, such as affordability and human acceptance. This paper presents a localisation framework using passive RFID sensors. It aims to provide a low cost solution for subject location in Smart Homes healthcare.
Improving the Quality of Informed Consent in Clinical Research with Information Technology
Authors: Taber Celia  , Warren Jim  , Day Karen
Published: February 2025

The clinical research industry has yet to fully embrace information technology (IT) for informed consent purposes, even though it is used indispensably in our everyday lives and in other areas of clinical research and healthcare. This paper presents findings of a meta-narrative literature review to discuss the potential for IT to improve the quality of clinical research informed consent. The review reveals three main rationales for including IT in research consent. First, in the current context consent documents frequently fail to be effective decision aids for patients, and the lack of patient centricity in the process. Second, social media provides opportunities for patients to consult with a broader community during research consent to seek broader support, and potential to participate in creating a more patient centric process. Third, multimedia tools provide opportunities for improved patient education, engagement and decision making during research consent. IT offers opportunities to achieve more meaningful research consent, but more research is needed to create an evidence base, policies and economic analyses on the return on investment of using IT in the process.
Current Trends in Electronic Medication Reminders for Self Care
Authors: Fang Kerry Y.  , Maeder Anthony J.  , Bjering Heidi
Published: February 2025

Poor adherence to medication can lead to negative health outcomes and increased financial burdens. We present a literature review on electronic medication reminders used for medication adherence in self care settings, to identify current and possible future trends. A structured PubMed search based on extracted MeSH terms provided a total of 45 publications which were identified as most relevant. Three main categories of electronic solutions were identified: mobile phone reminders, in-home electronic reminder devices, and portable reminder devices.
Disorders of Sterol Biosynthesis
Authors: Furtado Larissa V.  , Kelley Richard I.  , Opitz John M.
Published: February 2025

As a major component of the cell membrane of most eukaryotic cells, cholesterol assumes crucial roles in myelination of the central and peripheral nervous systems, in the synthesis of bile acids, steroids, and vitamin D, in sterol signaling, and in embryonic development. Inborn errors of cholesterol biosynthesis comprise a heterogeneous group of disorders characterized by developmental delays, increased tissue levels of specific sterol intermediates, and complex malformations involving many organ systems. Here we present the basics of cholesterol biosynthesis and review the clinical phenotype, biochemistry, molecular pathogenesis, and management of the 8 known errors of sterol metabolism in humans: Antley-Bixtler syndrome, Greenberg dysplasia, X-linked dominant congenital hemidysplasia with ichthyosiform erythroderma and limb defects (CHILD syndrome), X-linked dominant chondrodysplasia punctata (Conradi-Hünermann syndrome; CDPX2), lathosterolosis, Smith-Lemli-Opitz syndrome, desmosterolosis, and methyl sterol oxidase (SC4MOL) deficiency.
The Porphyrias
Authors: Gou Eric W.  , Phillips John D.  , Anderson Karl E.
Published: February 2025

The porphyrias are metabolic diseases caused by altered activities of enzymes in the heme biosynthetic pathway. Signs and symptoms of porphyria result from overproduction and accumulation of pathway intermediates. Recognizing the different types of porphyrias can be challenging due to similarities in presentation but etiology, pathogenesis, methods for diagnosis and treatment for each are distinct. In this overview of the porphyrias, we describe the eight enzymes in the heme biosynthetic pathway associated with each type of porphyria. We classify these diseases by their erythropoietic or hepatic origin and their cutaneous or neurovisceral manifestations. The etiology and pathophysiology specific to the type of porphyria is linked to the specific enzyme in the heme biosynthetic pathway. Emphasis is placed on specific clinical features, relevant diagnostic evaluation and appropriate therapy for each porphyria pertinent to treating physicians and clinicians.
Neuromuscular Disorders
Authors: Wong Kondi
Published: February 2025

Hereditary myopathies have been well defined on a molecular basis in recent years as a consequence of concerted efforts to identify the causal genetic mutations. This has not only clarified heretofore uncertain clinical and pathologic aspects such as variations in severity but also led to markedly enhanced diagnostic capabilities and also novel molecular therapeutic strategies. The most impressive, significant discoveries relate to the commonest severe disorders, namely Duchenne muscular dystrophy (DMD) and spinal muscular atrophy (SMA) syndromes. DMD, an X-linked disorder, is attributable to pathologic variants in the dystrophin gene, a huge segment of DNA at the p21 region on the short arm of the X chromosome; its ~2500 kb size makes dystrophin unusually susceptible to a high mutation rate. Newborn screening, based on detecting high levels of blood creatine kinase followed by DNA analyses facilitates early diagnosis and institution of helpful but not yet curative therapies. Infantile SMA is an autosomal recessive disorder due to mutations in two genes at the 5q11-q13 locus that encodes a neuronal apoptosis inhibitor protein and the survival motor neuron gene, respectively. Most cases are due to a homozygous deletion in the SMN1 gene of 5q13. This discovery permits application of a newborn screening test with complex DNA analysis, but improved therapies are needed before this strategy should become routine. Other myopathies such as myasthenia gravis and a variety of congenital neuropathies have also been better characterized through molecular research and thus can be diagnosed and managed more effectively.
Nursing Competencies for Multiple Modalities of Connected Health Technologies
Authors: Saranto Kaija  , Ronquillo Charlene  , Velez Olivia
Published: February 2025

An overview of the rapid and diverse number developments in health information technologies (HIT) in recent years are described in this chapter and the move towards more integrated and connected health is described. The evolution of HIT is described as it has increased in complexity, diversity, connectivity, and more recently, the move towards multiple modalities. Examples of developments in various settings are represented from clinical settings, at home, and in low-resource settings. The implications of the move towards multiple modalities for nursing competencies and the move towards personalized and connected health are discussed, highlighting important areas for consideration and development in the future.
Competences in Social Media Use in the Area of Health and Healthcare
Authors: Kouri Pirkko  , Rissanen Marja-Liisa  , Weber Patrick  , Park Hyeoun-Ae
Published: February 2025

In today's life, social media offer new working ways. People are increasingly expanding interactions from face-to-face meetings to online ways of communication, networking, searching, creating and sharing information, and furthermore taking care of patients/citizens via tweeting care, Facebook care, blogging care, vlogging care, infotainment care, gamification-care, infographic care, for instance. This chapter discusses the utilisation of social media in the healthcare domain including nursing education, practice and research. When in the current healthcare era, social media is used effectively and purposefully, it can give all of us a greater choice in how we live, how we take care of our health and how we learn and build both our professional competences and produce evidence-based, qualified data. Nurses need continuous education and proper tools to take the most of the benefits of social media, not forgetting privacy and ethical issues. This use of social media in professional nursing generates the need for new competences.
IMIA Educational Recommendations and Nursing Informatics
Authors: Mantas John  , Hasman Arie
Published: February 2025

The updated version of the IMIA educational recommendations has given an adequate guidelines platform for developing educational programs in Biomedical and Health Informatics at all levels of education, vocational training, and distance learning. This chapter will provide a brief introduction of the recommendations pinpointing aspects for developing and assessing educational programs. We will provide a review of the existing feedback we have acquired during the IMIA site visits of accrediting educational programs at a worldwide level and discuss implementations issues. A brief overview of existing academic programs in Europe, North America and in other regions, especially for programs related to Nursing and to Nursing Informatics is provided. Finally, we will draw conclusions as how the IMIA recommendations may be required to be fitted into the specific needs of the Nursing Informatics and the needs of the Nursing professionals when they apply the recommendations to their academic and/or hospital/professional environments.
Competencies Related to Informatics and Information Management for Practicing Nurses in Select Countries in Asia
Authors: Wu Ying  , Wang Yanling  , Ji Meihua
Published: February 2025

The advancement of information and communication technology have enabled nurses to practice more effectively, efficiently, and safely. This chapter introduces nursing informatics competency and information management competency for nurses in China (including Mainland China, Hong Kong and Taiwan), India, Japan, Korea, and Singapore. Most countries in Asia are still in the process of developing and standardizing competences that are relevant to nurses and those specialized in nursing informatics. The level and content of nursing informatics offered in entry-to-practice nursing education programs varies greatly. There is a growing need to adopt more comprehensive curriculum for entry-to-practice nursing education programs, as well as offer continuing education to help nurses to develop knowledge, skill, and attitude related to nursing informatics and information management in the world of connected health.
Effects-Driven Participatory Design: Learning from Sampling Interruptions
Authors: Brandrup Morten  , Østergaard Kija Lin  , Hertzum Morten  , Karasti Helena  , Simonsen Jesper
Published: February 2025

Participatory design (PD) can play an important role in obtaining benefits from healthcare information technologies, but we contend that to fulfil this role PD must incorporate feedback from real use of the technologies. In this paper we describe an effects-driven PD approach that revolves around a sustained focus on pursued effects and uses the experience sampling method (ESM) to collect real-use feedback. To illustrate the use of the method we analyze a case that involves the organizational implementation of electronic whiteboards at a Danish hospital to support the clinicians' intra- and interdepartmental coordination. The hospital aimed to reduce the number of phone calls involved in coordinating work because many phone calls were seen as unnecessary interruptions. To learn about the interruptions we introduced an app for capturing quantitative data and qualitative feedback about the phone calls. The investigation showed that the electronic whiteboards had little potential for reducing the number of phone calls at the operating ward. The combination of quantitative data and qualitative feedback worked both as a basis for aligning assumptions to data and showed ESM as an instrument for triggering in-situ reflection. The participant-driven design and redesign of the way data were captured by means of ESM is a central contribution to the understanding of how to conduct effects-driven PD.
Engaging People with Aphasia in Design of Rehabilitation Through Participatory Design: A Way to Learn what They Really Want
Authors: Konnerup Ulla
Published: February 2025

Research literature on participatory design in relation to people with communicative and cognitive disabilities often focuses on the challenges of communication among the participants. This paper presents a case study involving people suffering from communication disabilities after a brain injury (aphasia) early in a design process of an avatar-mediated virtual learning environment for rehabilitation. The example demonstrates how providing time and space and supporting the communication with well-suited tools and artefact opens for firth-hand domain knowledge of living with aphasia. The results demonstrate that participatory design methods might result in much more than just being a step in the design process. In this specific case, it turns out to be a tool to engage, involve, and empower people with communication disabilities to interact and communicate. The paper argues, that participatory design is a way for designers to gain insights into what people with aphasia really want and, consequently, might also be a key to redesign rehabilitation for people with communication disabilities.
Participatory Continuing Design: “Living with” Videoconferencing in Rehabilitation
Authors: Aanestad Margunn  , Driveklepp Anne Merete  , Sørli Hilde  , Hertzum Morten
Published: February 2025

While much research emphasizes design-before-use, we here study design-in-use. The notion of participatory continuing design is introduced to draw attention to the ongoing work of incorporating information and communication technology into work processes in healthcare institutions. Through an empirical case study of how telemedicine, in the form of videoconferencing, was taken up in a rehabilitation hospital in Norway, the nature of such ongoing experimentation, learning, and redesign is described. When contrasted with traditional design-before-use practices, participatory continuing design differs in terms of its timing, object, process, outcome, and participants. We offer recommendations for how such processes can be supported in healthcare organizations.
The Use of Case Studies in Systems Implementations Within Health Care Settings: A Scoping Review
Authors: Gill Rav  , Borycki Elizabeth M.
Published: February 2025

There is little evidence available in the research literature as to how to undertake an implementation process that ensures electronic medical record (EMR)/electronic health record (EHR) implementation success (i.e. high levels of clinician adoption). The research literature has documented the presence of a direct relationship between how systems are implemented and their level of adoption by clinicians after implementation. In order to develop recommendations for systems implementation to enhance the level of clinician adoption and to ensure EHR/EMR success, researchers need to analyze implementation failures (i.e. where there has been a low level of adoption among clinicians) and successes (i.e. where there has been a high level of clinician adoption). This paper examines EMR/EHR system implementation in the context of adoption success, by conducting a scoping review of the EMR/EHR case study literature. The paper attempts to answer the following: “How does the published, case study research literature provide insights into the success and/or failure of EMR/EHR implementations?” Case studies can provide insights that allow researchers to identify best practice approaches to EMR/EHR implementations that may turn the tide towards reducing the number failed EMR/EHR implementation projects.
Low-Cost Rapid Usability Testing: Its Application in Both Product Development and System Implementation
Authors: Kushniruk Andre  , Borycki Elizabeth
Published: February 2025

In recent years there has been considerable discussion around the need for certification and regulation of healthcare information technology (IT). In particular, the usability of the products being developed needs to be evaluated. This has included the application of standards designed to ensure the process of system development is user-centered and takes usability into consideration while a product is being developed. In addition to this, in healthcare, organizations in the United States and Europe have also addressed the need and requirement for product certification. However, despite these efforts there are continued reports of unusable and unsafe implementations. In this paper we discuss the need to not only include (and require) usability testing in the one-time development process of health IT products (such as EHRs), but we also argue for the need to additionally develop specific usability standards and requirements for usability testing during the implementation of vendor products (i.e. post product development) in healthcare settings. It is further argued that health IT products that may have been certified regarding their development process will still require application of usability testing in the process of implementing them in real hospital settings in order to ensure usability and safety. This is needed in order to ensure that the final result of both product development and implementation processes take into account and apply the latest usability principles and methods.
Building Research Capacity: Results of a Feasibility Study Using a Novel mHealth Epidemiological Data Collection System Within a Gestational Diabetes Population
Authors: McLean Allen  , Osgood Nathaniel  , Newstead-Angel Jill  , Stanley Kevin  , Knowles Dylan  , van der Kamp William  , Qian Weicheng  , Dyck Roland
Published: February 2025

Public health researchers have traditionally relied on individual self-reporting when collecting much epidemiological surveillance data. Data acquisition can be costly, difficult to acquire, and the data often notoriously unreliable. An interesting option for the collection of individual health (or indicators of individual health) data is the personal smartphone. Smartphones are ubiquitous, and the required infrastructure is well-developed across Canada, including many remote areas. Researchers and health professionals are asking themselves how they might exploit increasing smartphone uptake for the purposes of data collection, hopefully leading to improved individual and public health. A novel smartphone-based epidemiological data collection and analysis system has been developed by faculty and students from the CEPHIL (Computational Epidemiology and Public Health Informatics) Lab in the Department of Computer Science at the University of Saskatchewan. A pilot feasibility study was then designed to examine possible relationships between smartphone sensor data, surveys and individual clinical data within a population of pregnant women. The study focused on the development of Gestational Diabetes (GDM), a transient condition during pregnancy, but with serious potential post-birth complications for both mother and child. The researchers questioned whether real-time smartphone data could improve the clinical management and outcomes of women at risk for developing GDM, enabling earlier treatment. The initial results from this small study did not show improved prediction of GDM, but did demonstrate that real-time individual health and sensor data may be readily collected and analyzed efficiently while maintaining confidentiality. Because the original version of the data collection software could only run on Android phones, this often meant the study participants were required to carry two phones, and this often meant the study phone was not carried, and therefore data not collected. The lessons learned will greatly inform future research.
An Enterprise Architecture Perspective to Electronic Health Record Based Care Governance
Authors: Motoc Bogdan
Published: February 2025

This paper proposes an Enterprise Architecture viewpoint of Electronic Health Record (EHR) based care governance. The improvements expected are derived from the collaboration framework and the clinical health model proposed as foundation for the concept of EHR.
A Conceptual Model for Increasing Use of Electronic Medical Records by Primary Care Physicians Through End-User Support
Authors: Randhawa Gurprit K.
Published: February 2025

A conceptual model for exploring the relationship between end-user support (EUS) and electronic medical record (EMR) use by primary care physicians is presented. The model was developed following a review of conceptual and theoretical frameworks related to technology adoption/use and EUS. The model includes (a) one core construct (facilitating conditions), (b) four antecedents and one postcedent of facilitating conditions, and (c) four moderators. EMR use behaviour is the key outcome of the model. The proposed conceptual model should be tested. The model may be used to inform planning and decision-making for EMR implementations to increase EMR use for benefits realization.
Towards Data Value-Level Metadata for Clinical Studies
Authors: Zozus Meredith Nahm  , Bonner Joseph
Published: February 2025

While several standards for metadata describing clinical studies exist, comprehensive metadata to support traceability of data from clinical studies has not been articulated. We examine uses of metadata in clinical studies. We examine and enumerate seven sources of data value-level metadata in clinical studies inclusive of research designs across the spectrum of the National Institutes of Health definition of clinical research. The sources of metadata inform categorization in terms of metadata describing the origin of a data value, the definition of a data value, and operations to which the data value was subjected. The latter is further categorized into information about changes to a data value, movement of a data value, retrieval of a data value, and data quality checks, constraints or assessments to which the data value was subjected. The implications of tracking and managing data value-level metadata are explored.
Towards a Framework for Managing Risk Associated with Technology-Induced Error
Authors: Borycki Elizabeth M.  , Kushniruk Andre W.
Published: February 2025

Health information technologies (HIT) promised to streamline and modernize healthcare processes. However, a growing body of research has indicated that if such technologies are not designed, implemented or maintained properly this may lead to an increased incidence of new types of errors which the authors have referred to as “technology-induced errors”. In this paper, framework is presented that can be used to manage HIT risk. The framework considers the reduction of technology-induced errors at different stages by managing risks associated with the implementation of HIT. Frameworks that allow health information technology managers to employ proactive and preventative approaches that can be used to manage the risks associated with technology-induced errors are critical to improving HIT safety and managing risk associated with implementing new technologies.
Community Paramedicine Initiative: Transforming Paramedicine in British Columbia
Authors: Calderone Colton  , Brittain Michelle  , Sirivar Daniel  , Kotani Nancy
Published: February 2025

British Columbia's health care system is facing challenges related to rural access to care and an ever increasing demand for services. These variables are compounded by the anticipated needs of an aging population that can expect to live several of their golden years with a chronic illness. The introduction of community paramedicine in BC allows for a care delivery model that expands the role of qualified paramedics to include the delivery of prevention, health promotion and primary care services in the community. The implementation of the Community Paramedicine Initiative in rural and remote BC highlights a transformational approach to health care delivery empowered by a technology enabled perspective of community needs.
Exploratory Clustering for Patient Subpopulation Discovery
Authors: Gamberger Dragan  , Ženko Bernard  , Lavrač Nada  , the Alzheimer's Disease Neuroimaging Initiative
Published: February 2025

Exploratory Clustering is a novel general purpose clustering tool which is especially appropriate for medical domains in which we need to identify subpopulations that are similar in two different data layers. The tool implements the multi-layer clustering algorithm in a framework that enables iterative experiments by the user in his search for relevant patient subpopulations. A unique property of the tool is integration of clustering and feature selection algorithms. Differences in values of most relevant attributes are used to demonstrate decisive properties of constructed clusters. Usefulness of the tool is illustrated on a task of discovering groups of patients with similar cognitive impairment.
Disentangling Prognostic and Predictive Biomarkers Through Mutual Information
Authors: Sechidis Konstantinos  , Turner Emily  , Metcalfe Paul  , Weatherall James  , Brown Gavin
Published: February 2025

We study information theoretic methods for ranking biomarkers. In clinical trials, there are two, closely related, types of biomarkers: predictive and prognostic, and disentangling them is a key challenge. Our first step is to phrase biomarker ranking in terms of optimizing an information theoretic quantity. This formalization of the problem will enable us to derive rankings of predictive/prognostic biomarkers, by estimating different, high dimensional, conditional mutual information terms. To estimate these terms, we suggest efficient low dimensional approximations. Finally, we introduce a new visualisation tool that captures the prognostic and the predictive strength of a set of biomarkers. We believe this representation will prove to be a powerful tool in biomarker discovery.
The Effects of Heterogeneity in the Comparative Effectiveness of Individual Treatments in Randomised Trials
Authors: Pericleous Paraskevi  , van Staa Tjeerd  , Sperrin Matthew  , GetReal Work Package
Published: February 2025

In some randomised trials, the new treatment can be compared with usual care which can include multiple treatments and result in a heterogeneous control group. In this paper, we use simulation to assess the performance of various statistical methods to infer the individual effects of the various control treatments. These methods include inverse Probability Weighting, Doubly Robust Inverse Probability Weighting, Propensity Score, Disease Risk Score, Standardization and Multivariable Logistic Regression. Different scenarios were tested including unmeasured heterogeneity with or without confounding. The methods perform well when heterogeneity and confounding are both fully captured; however, for the scenarios where heterogeneity is not fully captured this leads to biased effect estimates, particularly where there is also unobserved confounding. Thus, leading to potentially misleading comparative effectiveness of individual treatments.
Personalized Guideline-Based Treatment Recommendations Using Natural Language Processing Techniques
Authors: Becker Matthias  , Böckmann Britta
Published: February 2025

Clinical guidelines and clinical pathways are accepted and proven instruments for quality assurance and process optimization. Today, electronic representation of clinical guidelines exists as unstructured text, but is not well-integrated with patient-specific information from electronic health records. Consequently, generic content of the clinical guidelines is accessible, but it is not possible to visualize the position of the patient on the clinical pathway, decision support cannot be provided by personalized guidelines for the next treatment step. The Systematized Nomenclature of Medicine – Clinical Terms (SNOMED CT) provides common reference terminology as well as the semantic link for combining the pathways and the patient-specific information. This paper proposes a model-based approach to support the development of guideline-compliant pathways combined with patient-specific structured and unstructured information using SNOMED CT. To identify SNOMED CT concepts, a software was developed to extract SNOMED CT codes out of structured and unstructured German data to map these with clinical pathways annotated in accordance with the systematized nomenclature.
Ubiquitous Adoption of Innovative and Supportive Information and Communications Technology Across Health and Social Care Needs Education for Clinicians
Authors: Procter Paula M.
Published: February 2025

The paper presents the development, use and evaluation of an on-line undergraduate module delivering an academic-led programme of eHealth learning within nursing, midwifery, allied health professional and social work courses. The health information technology competency frameworks are explored along with an overview of the resulting module. The need for an academically led module will be made along with a description of the management required to maintain validity of content materials. A review of student evaluations will be presented. In conclusion the positive change in attitude and understanding of academic staff members towards health information technology through the inclusion of the module across all of the undergraduate courses will be explored.
Parallel Design of Browsing Scheme and Data Model for Multi-Level Hierarchical Application Devoted to Management of Patient with Infectious Disease in Primary Care
Authors: Ugon Adrien  , Duclos Catherine  , Konate Salamata  , Arnedos Lopez Sarah  , Yazidi Hechem  , Venot Alain  , Jaulent Marie-Christine  , Tsopra Rosy
Published: February 2025

Many decision systems are based on a hierarchical approach, enriching the known context used to finally choose the right potential action. Designing the scheme for browsing the clinical guidelines is a task devoted to expert in infectious diseases. Designing the data model is a task devoted to the expert in data modeling. As a consequence, browsing scheme and data model generally differ in terms of abstraction levels. While the browsing scheme proposes to navigate into depth, the data model stays flat. We propose here a novel method to design in parallel the browsing scheme and the data model so that both of them reflect the different abstraction levels in decision process.
Preliminary Analysis of the OBO Foundry Ontologies and Their Evolution Using OQuaRE
Authors: Quesada-Martínez Manuel  , Duque-Ramos Astrid  , Iniesta-Moreno Miguela  , Fernández-Breis Jesualdo Tomás
Published: February 2025

The biomedical community has now developed a significant number of ontologies. The curation of biomedical ontologies is a complex task as they evolve rapidly, being new versions regularly published. Therefore, methods to support ontology developers in analysing and tracking the evolution of their ontologies are needed. OQuaRE is an ontology evaluation framework based on quantitative metrics that permits to obtain normalised scores for different ontologies. In this work, OQuaRE has been applied to 408 versions of the eight OBO Foundry member ontologies. The OBO Foundry member ontologies are supposed to have been built by applying the OBO Foundry principles. Our results show that this set of ontologies is actually following principles such as the naming convention, and that the evolution of the OBO Foundry member ontologies is generating ontologies with higher OQuaRE quality scores.
A Terminology in General Practice/Family Medicine to Represent Non-Clinical Aspects for Various Usages: The Q-Codes
Authors: Jamoulle Marc  , Grosjean Julien  , Resnick Melissa  , Ittoo Ashwin  , Treuherz Arthur  , Vander Stichele Robert  , Cardillo Elena  , Darmoni Stéfan J.  , Shamenek Frank S.  , Vanmeerbeek Marc
Published: February 2025

The hereby proposed terminology called “Q-Codes” can be defined as an extension of the International Classification of Primary Care (ICPC-2). It deals with non-clinical concepts that are relevant in General Practice/Family Medicine (GP/FM). This terminology is a good way to put an emphasis on underestimated topics such as Teaching, Patient issues or Ethics. It aims at indexing GP/FM documents such as congress abstracts and theses to get a more comprehensive view about the GP/FM domain. The 182 identified Q-Codes have been very precisely defined by a college of experts (physicians and terminologists) from twelve countries. The result is available on the Health Terminology/Ontology Portal (http://www.hetop.org/Q) and formatted in OWL-2 for further semantic considerations and will be used to index the 2016 WONCA World congress communications.