Web strategies for the curation and discovery of openeducational resources

For those receiving funding from the UK HEFCE-funded Open Educational Resource Programme (2009 – 2012), the sustainability of project outputs was one of a number of essential goals. Our approach for the hosting and distribution of health and life science open educational resources (OER) was based on the utilisation of the WordPress.org blogging platform and search engine optimisation (SEO) techniques to curate content and widen discovery. This paper outlines the approaches taken and tools used at the time, and reflects upon the effectiveness of web strategies several years post-funding. The paper concludes that using WordPress.org as a platform for sharing and curating OER, and the adoption of a pragmatic approach to SEO, offers cheap and simple ways for small scale open education projects to be effective and sustainable

A learning health systems approach to integrating electronic patient-reported outcomes across the health care organization

Introduction: Foundational to a learning health system (LHS) is the presence of a data infrastructure that can support continuous learning and improve patient outcomes. To advance their capacity to drive patient-centered care, health systems are increasingly looking to expand the electronic capture of patient data, such as electronic patient-reported outcome (ePRO) measures. Yet ePROs bring unique considerations around workflow, measurement, and technology that health systems may not be poised to navigate. We report on our effort to develop generalizable learnings that can support the integration of ePROs into clinical practice within an LHS framework. Methods: Guided by action research methodology, we engaged in iterative cycles of planning, acting, observing, and reflecting around ePRO use with two primary goals: (1) mobilize an ePRO community of practice to facilitate knowledge sharing, and (2) establish guidelines for ePRO use in the context of LHS practice. Multiple, emergent data collection activities generated generalizable guidelines that document the tangible best practices for ePRO use in clinical care. We organized guidelines around thematic areas that reflect LHS structures and stakeholders. Results: Three core thematic areas (and 24 guidelines) emerged. The theme of governance reflects the importance of leadership, knowledge management, and facilitating organizational learning around best practice models for ePRO use. The theme of integration considers the intersection of workflow, technology, and human factors for ePROs across areas of care delivery. Lastly, the theme of reporting reflects critical considerations for curating data and information, designing system functions and interactions, and presentation of ePRO data to support the translation of knowledge to action. Conclusions: The guidelines produced from this work highlight the complex, multidisciplinary nature of implementing change within LHS contexts, and the value of action research approaches to enable rapid, iterative learning that leverages the knowledge and experience of communities of practice

Causally Linking Health Application Data and Personal Information Management Tools

The proliferation of consumer health devices such as smart watches, sleep monitors, smart scales, etc, in many countries, has not only led to growing interest in health monitoring, but also to the development of a countless number of ``smart'' applications to support the exploration of such data by members of the general public, sometimes with integration into professional health services. While a variety of health data streams has been made available by such devices to users, these streams are often presented as separate time-series visualizations, in which the potential relationships between health variables are not explicitly made visible. Furthermore, despite the fact that other aspects of life, such as work and social connectivity, have become increasingly digitised, health and well-being applications make little use of the potentially useful contextual information provided by widely used personal information management tools, such as shared calendar and email systems. This paper presents a framework for the integration of these diverse data sources, analytic and visualization tools, with inference methods and graphical user interfaces to help users by highlighting causal connections among such time-series

Open Data, Grey Data, and Stewardship: Universities at the Privacy Frontier

As universities recognize the inherent value in the data they collect and hold, they encounter unforeseen challenges in stewarding those data in ways that balance accountability, transparency, and protection of privacy, academic freedom, and intellectual property. Two parallel developments in academic data collection are converging: (1) open access requirements, whereby researchers must provide access to their data as a condition of obtaining grant funding or publishing results in journals; and (2) the vast accumulation of 'grey data' about individuals in their daily activities of research, teaching, learning, services, and administration. The boundaries between research and grey data are blurring, making it more difficult to assess the risks and responsibilities associated with any data collection. Many sets of data, both research and grey, fall outside privacy regulations such as HIPAA, FERPA, and PII. Universities are exploiting these data for research, learning analytics, faculty evaluation, strategic decisions, and other sensitive matters. Commercial entities are besieging universities with requests for access to data or for partnerships to mine them. The privacy frontier facing research universities spans open access practices, uses and misuses of data, public records requests, cyber risk, and curating data for privacy protection. This paper explores the competing values inherent in data stewardship and makes recommendations for practice, drawing on the pioneering work of the University of California in privacy and information security, data governance, and cyber risk.Comment: Final published version, Sept 30, 201

Debutant iOS app and gene-disease complexities in clinical genomics and precision medicine.

BACKGROUND: The last decade has seen a dramatic increase in the availability of scientific data, where human-related biological databases have grown not only in count but also in volume, posing unprecedented challenges in data storage, processing, analysis, exchange, and curation. Next generation sequencing (NGS) advancements have facilitated and accelerated the process of identifying genetic variations. Adopting NGS with Whole-Genome and RNA sequencing in a diagnostic context has the potential to improve disease-risk detection in support of precision medicine and drug discovery. Several bioinformatics pipelines have been developed to strengthen variant interpretation by efficiently processing and analyzing sequence data, whereas many published results show how genomics data can be proactively incorporated into medical practices and improve utilization of clinical information. To utilize the wealth of genomics and health, there is a crucial need to generate appropriate gene-disease annotation repositories accessed through modern technology. RESULTS: Our focus here is to create a comprehensive database with mobile access to actionable genes and classified diseases, considered the foundation for clinical genomics and precision medicine. We present a publicly available iOS app, PAS-Gen, which invites global users to freely download it on iPhone and iPad devices, quickly adopt its easy to use interface, and search for genes and related diseases. PAS-Gen was developed using Swift, XCODE, and PHP scripting that uses Web and MySQL database servers, which includes over 59,000 protein-coding and non-coding genes, and over 90,000 classified gene-disease associations. PAS-Gen is founded on the clinical and scientific premise that easier healthcare and genomics data sharing will accelerate future medical discoveries. CONCLUSIONS: We present a cutting-edge gene-disease database with a smart phone application, integrating information on classified diseases and related genes. The PAS-Gen app will assist researchers, medical practitioners, and pharmacists by providing a broad and view of genes that may be implicated in the likelihood of developing certain diseases. This tool with accelerate users\u27 abilities to understand the genetic basis of human complex diseases and by assimilating genomic and phenotypic data will support future work to identify gene-specific designer drugs, target precise molecular fingerprints for tumors, suggest appropriate drug therapies, predict individual susceptibility to disease, and diagnose and treat rare illnesses

A National Network of Safe Havens:A Scottish Perspective

For over a decade, Scotland has implemented and operationalized a system of Safe Havens, which provides secure analytics platforms for researchers to access linked, deidentified electronic health records (EHRs) while managing the risk of unauthorized reidentification. In this paper, a perspective is provided on the state-of-the-art Scottish Safe Haven network, including its evolution, to define the key activities required to scale the Scottish Safe Haven network’s capability to facilitate research and health care improvement initiatives. A set of processes related to EHR data and their delivery in Scotland have been discussed. An interview with each Safe Haven was conducted to understand their services in detail, as well as their commonalities. The results show how Safe Havens in Scotland have protected privacy while facilitating the reuse of the EHR data. This study provides a common definition of a Safe Haven and promotes a consistent understanding among the Scottish Safe Haven network and the clinical and academic research community. We conclude by identifying areas where efficiencies across the network can be made to meet the needs of population-level studies at scale

Reporting health data in waiting rooms with mobile technology: Patient expectation and confirmation

Objectives: Hospitals and medical staff use digital devices such as mobile phones and tablets to treat patients. Prior research has examined patient-reported outcomes, and the use of medical devices to do diagnosis and prognosis of patients, but not whether patients like using, and intend to use in future, mobile devices to self-report medical data. We address this research gap by developing a theoretical model based on the expectancy confirmation model (ECM) and testing it in an empirical study of patients using mobile technology to self-report data. Design: This study adopts a non-interventional cross-sectional research design. Randomly-selected patients provided data via survey and physical measurements. The target population comprises adults visiting a healthcare laboratory to get their blood drawn. Materials and methods: We surveyed 190 randomly-selected patients waiting for treatment in the clinic. They were surveyed at two points in time - before and after their blood was drawn - on their demographic characteristics, research variables concerning their use of mobile devices to provide medical information, and perceived clinical data (blood pressure, height and weight). The research model was tested using structural equation modeling. Results: The study found strong support for the research model, with seven of eight hypotheses being supported. Both self-disclosure effort and feedback expectation positively affect both perceived feedback quality and confirmation. Contrary to expectations, perceived feedback quality was not found to affect confirmation. Perceived feedback quality, along with confirmation, was found to positively affect satisfaction, which was found to affect intention to disclose medical data through mobile technology. Conclusions: The study\u27s findings support the proposed path from feedback expectation and self-disclosure effort to confirmation to satisfaction to disclosure intention. Although perceived feedback does not affect confirmation, it affects satisfaction. Overall, we believe the results provide novel insights to both scientific research community and practitioners about using mobile technologies for self-reporting medical data

An Ecological Approach to Smart Homes for Health Care Services: Conceptual Framework of a Smart Servicescape Wheel

Background: Smart homes are considered effective solutions for home health care for the elderly, as smart home technologies can reduce care costs and improve elderly residents' independence. To develop a greater understanding of smart homes for health care services (SHHSs), this study accentuated the necessity of ecological approaches with an emphasis on environmental constraints. This study was based on 2 rationales: (1) users are inclined to perceive the service quality and service experience from environments (ie, servicescape) owing to the intangibility of health care and the pervasiveness of smart home technologies, and (2) both service domains are complex adaptive systems in which diversified and undefined service experiences-not only a few intended service flows-can be generated by complex combinations of servicescape elements. Objective: This study proposed the conceptual framework of a Smart Servicescape Wheel (SSW) as an ecological approach delineating the extensive spectrum of environmental constraints in SHHSs. Methods: The SSW framework was established based on a literature review. Results: Generally divided by perceptible and imperceptible servicescapes, the SSW consists of the perceptible Physical scape (ie, hardware components, environmental cues, and human states) and Social scape (ie, service relationships and social relationships) as well as the imperceptible Datascape (ie, computing intelligence, databases, and communication networks). Following the ecological approach, each category of the SSW is subdivided and defined at the level of components or functions. Conclusions: The SSW's strengths lie in the various application opportunities for SHHSs. In terms of service planning and development, the SSW can be utilized to (1) establish the requirements for SHHS development, (2) associate with work domain analysis by defining component layers, and (3) understand the real contexts of SHHSs for the enhanced prediction of diverse service experiences. Regarding service management, it can be applied to develop measurement items for the operation and evaluation of SHHSs.This work was supported by the Ministry of Education of the Republic of Korea and the National Research Foundation of Korea under grant NRF-2017S1A5A8019275. This fund has no specific role or influence in the research process

Navigating Healthcare Insights: A Birds Eye View of Explainability with Knowledge Graphs

Knowledge graphs (KGs) are gaining prominence in Healthcare AI, especially in drug discovery and pharmaceutical research as they provide a structured way to integrate diverse information sources, enhancing AI system interpretability. This interpretability is crucial in healthcare, where trust and transparency matter, and eXplainable AI (XAI) supports decision making for healthcare professionals. This overview summarizes recent literature on the impact of KGs in healthcare and their role in developing explainable AI models. We cover KG workflow, including construction, relationship extraction, reasoning, and their applications in areas like Drug-Drug Interactions (DDI), Drug Target Interactions (DTI), Drug Development (DD), Adverse Drug Reactions (ADR), and bioinformatics. We emphasize the importance of making KGs more interpretable through knowledge-infused learning in healthcare. Finally, we highlight research challenges and provide insights for future directions.Comment: IEEE AIKE 2023, 8 Page