Developing Data Sharing Models for Health Research with Real-World Data: A Scoping Review of Patient and Public Preferences.

For researchers to realize the benefits of real-world data in healthcare requires broader access to patient data than is currently possible given siloed data systems. To facilitate evidence generation, infrastructure must support integrated data collection and sharing enabled by patient consent. Critical to the success of data sharing is to design secured data sharing platforms around patient preferences and expectations. The objective of this review was to characterize patient and public preferences for secured data sharing platforms and incentives to share real-world data for health research. We conducted a scoping review of the data sharing and health informatics literature capturing patient and public values for data sharing platforms and incentivization. We searched Embase and Medline (OVID) databases for primary data studies. Two reviewers participated in study selection and data abstraction. Findings were summarized according to preference frequency within each major theme. The final search produced 253 articles. After screening, 12 articles were included for data extraction. Two studies discussed preferences for data sharing platforms, 7 discussed incentives preferences, and 3 addressed both. We identified considerable variation of patient and public preferences according to preferred consent mechanisms and level of control, willingness to trade off risks and benefits, and the type of incentivization appropriate to offer for participation. This preference variation informs the conditions under which individuals may be willing to engage with secured data sharing platforms to support research. Our findings indicate that platforms will need to be flexible to meet the diverse preferences of users and facilitate uptake.

MDMPR: Mouse Developmental and Metabolic Phenotype Repository.

Mouse Developmental and Metabolic Phenotype Repository (MDMPR) is an open access, real-time database which dedicates to share mouse resources and phenotype data. MDMPR is supported by the National Key Research and Development Project "Establishment of Mouse Developmental and Metabolic Phenotype Repository" within the Key Project of "Developmental Programming and Its Metabolic Regulation" from the Ministry of Science and Technology of the People's Republic of China's program. In the next 5 years, MDMPR will create 500 mutant mouse models related to development and metabolism, perform standard phenotyping analysis, and establish a phenotype database. MDMPR is a combination of resources and data repository, has several sub-systems, including the ES cell database, the project management system, the breeding management system, the sperm bank management system and the phenotyping database. These systems digitalize all data and ensure their authenticity in real-time. Besides the gradual increase of data during the project, MDMPR will also integrate other resources, such as human KO ES cell database, STRING database, database of Core Transcriptional Regulatory Circuitries and Enhancer-Indel database. MDMPR is anticipated to contribute to various areas of developmental and metabolic research to investigators through more convenient accesses to the resources and data in one-stop manner, thereby accelerating the research processes and ultimately serving the medical causes of human health.

Digital morphology network for effective teaching of cytology, histology and histopathology for medical and biology curriculum. VM3.0 Erasmus+ project.

INTRODUCTION: Digital microscopy transformation, the basis for the virtual microscopy applications, is a challenge but also a requirement in modern Medical Education. This paper presents the scope, background, methods, and results of the project "Digital Transformation of Histology and Histopathology by Virtual Microscopy (VM) for an Innovative Medical School Curriculum", VM3.0, funded by the European Union under the Erasmus+ framework (ref.no.2022-1- RO01-KA220-HED-000089017). The project was initiated at Grigore T. Popa University of Medicine and Pharmacy, Iași, Romania, with the support of Euroed Foundation, Iași, and cooperation of University partners from Gdansk (Poland), Plovdiv (Bulgaria), Alicante (Spain), and Patras (Greece) aimed to implement digital histology and histopathology teaching in a common network. MATERIALS AND METHODS: The backbone of the project was the development of a Digital Slide Platform based on the scans of histological slides collected from all the partners of the participating universities and the creation of a simple and fast digital/internet communication tool that could be used to improve histology and histopathology teaching of medical and natural sciences students. The construction of a Virtual Microscopy Library (VML) has been based on the acquisition of whole scans of high-quality histological slides stained by hematoxylin and eosin (H&E) and other classical staining methods and description of various organs' details in English as well as respective languages of the project's partners. The VML can be used for different approches, both for students' instruction in classes as well as for individual students' work and self-testing. Universities from other countries could use the modal structure of the developed VML system on the condition that more slides are provided and the implementation of national language(s) is implemented. CONCLUSIONS: The combined efforts of all university partners allowed to establish the dynamic low-cost virtual microscopy educational system. The VM system could help unify the standards of cytology, histology, and histopathology teaching in a quest for the digital transformation of the European educational system.

A blockchain-enabled sharing platform for personal health records.

Background: Longitudinal personal health record (PHR) provides a foundation for managing patients' health care, but we do not have such a system in the U.S. except for the patients in the Department of Veterans Affairs. Such a gap exists mainly in the rest of the U.S. by the fact that patients' electronic health records are scattered across multiple health care facilities and often not shared due to privacy, security, and business interests concerns from both patients and health care organizations. In addition, patients have ethical concerns related to consent. To patients, data security, privacy, and consent are based on trustfulness, rather than patients' engagement in ensuring only authorized people can view their PHRs with patient-managed granularity. Resolving these challenges is an important step in making longitudinal PHR useful for patient care. Objective: This research aims to design and implement a blockchain-enabled sharing platform prototype for PHR with desired patient-controlled data security, privacy, and consent granularity. Methods: Built upon our prior work of a blockchain-enabled access control (BAC) model, we design a blockchain-enabled sharing platform for PHR with patient-controlled security, privacy, and consent granularity. We further implement the construct by building a prototypical platform among a patient and two typical health care organizations. Health organizations that hold the patient's electronic health records can join the platform with trust based on the validation from the patient. The mutual trust can be established through a rigorous validation process by both the patient and the built-in Hyperledger Fabric blockchain consensus mechanism. Results: We proposed a system trusted by patients and health care providers and constructed a Web-based PHR sharing platform with patient-controlled security, privacy, and consent granularity. We analyzed the system scalability in three aspects and showed millisecond range of performance when simultaneously changing access permissions on hundreds of PHRs. Consent, security and privacy of the model are ensured by the merits of the BAC model. We discovered the current blockchain model limits the system scalability due to using a non-graphical database. A new graphical database is suggested for future improvements. Conclusions: In this research, we report a solution to electronically sharing and managing patients' electronic health records originating from multiple organizations, focusing on privacy, security, and granularity control of consent in the U.S. Specifically, the system protects data security and privacy, and provides auditability, scalability, distributedness, patient consent autonomy, and zero-trust capabilities. The prototypical instantiation of the designed model suggested the feasibility of combining emerging blockchain technology with next generation access control model to tackle a longstanding longitudinal PHR problem.

Everyday non-partisan fake news: Sharing behavior, platform specificity, and detection.

Concern over the impact of fake news on major socio-political events is growing. The use of deliberate misinformation is thought to have played a role in the outcome of the UK EU referendum, the 2016 US presidential election, and in the effectiveness of COVID-19 public health messaging. As a result, recent research has tended to focus on hyper-partisan (e.g., US politics; Democrat/Republican), person specific (e.g., Hillary Clinton/Donald Trump) content that incorporates emotive and hyperbolic language. However, in this study, we focus on an alternative form of fake news, across a variety of topics (e.g., Crime, Immigration, and Health), that avoids these characteristics, and which may therefore be more pervasive and difficult to detect. In a three-part study, we examined participants sharing intentions for fake news (including platform preference; Facebook, Twitter, Instagram, and WhatsApp), their ability to explicitly detect fake news, and whether individual differences on psychological measures of critical thinking ability, rational thinking, and emotional stability predict sharing behavior and detection ability. The results show that even our well-informed sample (political science students) were not immune to the effects of fake news, some issues (e.g., health and crime) were more likely to be shared than others (e.g., immigration), and on specific platforms (e.g., Twitter, Facebook). In addition, we show that individual differences in emotional stability appears to be a key factor in sharing behavior, while rational thinking aptitude was key to fake news detection. Taken together, this study provides novel data that can be used to support targeted fake news interventions, suggesting possible news topic, sharing behavior, and platform specific insights. Such interventions, and implications for government policy, education, and social media companies are discussed.

English teaching system design based on ID3 algorithm and node optimization.

In order to optimize the integration of English multimedia resources and achieve the goal of sharing English teaching resources in education, this article reconstructs the traditional college English curriculum system. It divides professional English into learning modules according to different majors integrating public health teaching resources. How optimize the integration of English multimedia resources and achieving the goal of sharing English teaching resources (ETR) is the main direction of English teaching reform during the current COVID-19 pandemic. An English multimedia teaching resource-sharing platform is designed to extract feature items from multimedia teaching resources using the ID3 information gain method and construct a decision tree for resource push. In resource sharing, a structured peer-to-peer network is used to manage nodes, query location and share multimedia teaching resources. The optimal gateway node is selected by calculating the distance between each gateway node and the fixed node. Finally, a collaborative filtering (CF) algorithm recommends Multimedia ETR to different users. The simulation results show that the platform can improve the sharing speed and utilization rate of teaching resources, with maximum throughput reaching 12 Mb/s and achieve accurate recommendations of ETR.

Video-Sharing Platform Viewing Among Preschool-Aged Children: Differences by Child Characteristics and Contextual Factors.

Free video-sharing platforms such as YouTube are highly popular among young children but may contain low-quality and highly commercialized content. This study aimed to describe the prevalence, duration, and timing of objectively measured mobile YouTube viewing in preschool-aged children and test hypotheses about associations with child individual differences and contextual factors. We analyzed mobile sampling data from 349 English-speaking children aged 3-4.99 years whose parents completed surveys about child, parent, and household characteristics. We assessed whether the child ever viewed YouTube during the sampling week and calculated average daily duration in a subsample of 121 participants with their own mobile devices. We built multivariable logistic regression models to test correlates of mobile YouTube viewership and duration. Children were 3.82 years (SD 0.53), 74.6 percent white non-Hispanic; parents were mostly mothers (93.7 percent), 34.0 (SD 4.6) years, and 37.9 percent had less than a college degree. Mobile YouTube viewing (37.0 percent of children) was more likely in children who used Android devices, shared mobile devices with family members, were older, attended home-based childcare, or had parents with lower educational attainment. Median YouTube duration was 61.2 min/day, with longer durations in children whose parents had lower educational attainment. These results demonstrate that many young children use free video-sharing platforms on mobile devices for long durations, and this practice may be disproportionately higher in children from lower socioeconomic status. Longitudinal research is needed on video-sharing platform viewing and child outcomes.

Influence of intrinsic motivations on the continuity of scientific knowledge contribution to online knowledge-sharing platforms.

Scientific knowledge contribution to online knowledge-sharing platforms has long been regarded as instrumental behavior based on utilitarian considerations. Employing cognitive evaluation theory, this study examines scientific expert users' behavioral metrics to understand the factors responsible for users continuing to contribute their scientific knowledge for an extended period or a very short span. We found that expert users' intrinsic motivations, which has received little attention in recent studies, constitute an important indicator of sustained online scientific knowledge contribution. Furthermore, although social rewards fail to predict the continuity of scientific knowledge contribution, they prolong the duration of knowledge contribution by enhancing the intrinsic motivations of expert users. In conclusion, a self-reinforcement mechanism underlies the relationship of intrinsic motivation with social rewards, which governs continuous online scientific knowledge contribution behavior.

The COMPARE Data Hubs.

Data sharing enables research communities to exchange findings and build upon the knowledge that arises from their discoveries. Areas of public and animal health as well as food safety would benefit from rapid data sharing when it comes to emergencies. However, ethical, regulatory and institutional challenges, as well as lack of suitable platforms which provide an infrastructure for data sharing in structured formats, often lead to data not being shared or at most shared in form of supplementary materials in journal publications. Here, we describe an informatics platform that includes workflows for structured data storage, managing and pre-publication sharing of pathogen sequencing data and its analysis interpretations with relevant stakeholders.

Sharing simulation-based training courses between institutions: opportunities and challenges.

BACKGROUND: Sharing simulation-based training (SBT) courses between institutions could reduce time to develop new content but also presents challenges. We evaluate the process of sharing SBT courses across institutions in a mixed method study estimating the time required and identifying barriers and potential solutions. METHODS: Two US academic medical institutions explored instructor experiences with the process of sharing four courses (two at each site) using personal interviews and a written survey and estimated the time needed to develop new content vs implement existing SBT courses. RESULTS: The project team spent approximately 618 h creating a collaboration infrastructure to support course sharing. Sharing two SBT courses was estimated to save 391 h compared with developing two new courses. In the qualitative analysis, participants noted the primary benefit of course sharing was time savings. Barriers included difficulty finding information and understanding overall course flow. Suggestions for improvement included establishing a standardized template, clearly identifying the target audience, providing a course overview, communicating with someone familiar with the original SBT course, employing an intuitive file-sharing platform, and considering local culture, context, and needs. CONCLUSIONS: Sharing SBT courses between institutions is feasible but not without challenges. An initial investment in a sharing infrastructure may facilitate downstream time savings compared with developing content de novo.

eGender-from e-Learning to e-Research: a web-based interactive knowledge-sharing platform for sex- and gender-specific medical education.

BACKGROUND: Sex and Gender Medicine is a novel discipline that provides equitable medical care for society and improves outcomes for both male and female patients. The integration of sex- and gender-specific knowledge into medical curricula is limited due to adequate learning material, systematic teacher training and an innovative communication strategy. We aimed at initiating an e-learning and knowledge-sharing platform for Sex and Gender Medicine, the eGender platform (http://egender.charite.de), to ensure that future doctors and health professionals will have adequate knowledge and communication skills on sex and gender differences in order to make informed decisions for their patients. METHODS: The web-based eGender knowledge-sharing platform was designed to support the blended learning pedagogical teaching concept and follows the didactic concept of constructivism. Learning materials developed by Sex and Gender Medicine experts of seven universities have been used as the basis for the new learning tools. The content of these tools is patient-centered and provides add-on information on gender-sensitive aspects of diseases. The structural part of eGender was designed and developed using the open source e-learning platform Moodle. The eGender platform comprises an English and a German version of e-learning modules: one focusing on basic knowledge and seven on specific medical disciplines. Each module consists of several courses corresponding to a disease or symptom complex. Self-organized learning has to be managed by using different learning tools, e.g., texts and audiovisual material, tools for online communication and collaborative work. RESULTS: More than 90 users from Europe registered for the eGender Medicine learning modules. The most frequently accessed module was "Gender Medicine-Basics" and the users favored discussion forums. These e-learning modules fulfill the quality criteria for higher education and are used within the elective Master Module "Gender Medicine-Basics" implemented into the accredited Master of Public Health at Charité-Berlin. CONCLUSIONS: The eGender platform is a flexible and user-friendly electronical knowledge-sharing platform providing evidence-based high-quality learning material used by a growing number of registered users. The eGender Medicine learning modules could be key in the reform of medical curricula to integrate Sex and Gender Medicine into the education of health professionals.