Real-time procedure information sharing as a means to reduce perioperative anxiety in families of children undergoing elective surgery - a randomized controlled study.

OBJECTIVE: To investigate whether the surgical process information sharing system could alleviate the parental anxiety during a pediatric selective operation. DESIGN: Randomized controlled trial. METHODS: A questionnaire survey was conducted one day before surgery for the enrolled participants. Family members assigned to the intervention group received real-time process information sharing through service reminders during the surgical period, while the control group received standard perioperative education. The Pittsburgh Sleep Quality Index (PSQI) was used to evaluate sleep quality during the perioperative period, and the State of Cohesion-13 Scale (SOC-13) and Self-rating Anxiety Scale (SAS) were used to assess anxiety levels. Satisfaction levels during the perioperative period were assessed through a follow-up survey conducted one day after surgery. RESULTS: The intervention group showed better scores in terms of PSQI, SOC-13, SAS, and postoperative satisfaction levels at various time points compared to the control group, with statistically significant differences observed (P < 0.05). CONCLUSION: Real-time process information sharing is effective in reducing perioperative sleep disorders and anxiety among family members of pediatric patients, as well as improving satisfaction levels. This approach not only establishes a process and mechanism for effective doctor-patient communication but also helps implement continuous perioperative care, thereby optimizing internet healthcare services.

Sharing sensitive data in life sciences: an overview of centralized and federated approaches.

Biomedical data are generated and collected from various sources, including medical imaging, laboratory tests and genome sequencing. Sharing these data for research can help address unmet health needs, contribute to scientific breakthroughs, accelerate the development of more effective treatments and inform public health policy. Due to the potential sensitivity of such data, however, privacy concerns have led to policies that restrict data sharing. In addition, sharing sensitive data requires a secure and robust infrastructure with appropriate storage solutions. Here, we examine and compare the centralized and federated data sharing models through the prism of five large-scale and real-world use cases of strategic significance within the European data sharing landscape: the French Health Data Hub, the BBMRI-ERIC Colorectal Cancer Cohort, the federated European Genome-phenome Archive, the Observational Medical Outcomes Partnership/OHDSI network and the EBRAINS Medical Informatics Platform. Our analysis indicates that centralized models facilitate data linkage, harmonization and interoperability, while federated models facilitate scaling up and legal compliance, as the data typically reside on the data generator's premises, allowing for better control of how data are shared. This comparative study thus offers guidance on the selection of the most appropriate sharing strategy for sensitive datasets and provides key insights for informed decision-making in data sharing efforts.

Measuring data rot: An analysis of the continued availability of shared data from a Single University.

To determine where data is shared and what data is no longer available, this study analyzed data shared by researchers at a single university. 2166 supplemental data links were harvested from the university's institutional repository and web scraped using R. All links that failed to scrape or could not be tested algorithmically were tested for availability by hand. Trends in data availability by link type, age of publication, and data source were examined for patterns. Results show that researchers shared data in hundreds of places. About two-thirds of links to shared data were in the form of URLs and one-third were DOIs, with several FTP links and links directly to files. A surprising 13.4% of shared URL links pointed to a website homepage rather than a specific record on a website. After testing, 5.4% the 2166 supplemental data links were found to be no longer available. DOIs were the type of shared link that was least likely to disappear with a 1.7% loss, with URL loss at 5.9% averaged over time. Links from older publications were more likely to be unavailable, with a data disappearance rate estimated at 2.6% per year, as well as links to data hosted on journal websites. The results support best practice guidance to share data in a data repository using a permanent identifier.

Examining the Effectiveness of Social Media for the Dissemination of Research Evidence for Health and Social Care Practitioners: Systematic Review and Meta-Analysis.

BACKGROUND: Social media use has potential to facilitate the rapid dissemination of research evidence to busy health and social care practitioners. OBJECTIVE: This study aims to quantitatively synthesize evidence of the between- and within-group effectiveness of social media for dissemination of research evidence to health and social care practitioners. It also compared effectiveness between different social media platforms, formats, and strategies. METHODS: We searched electronic databases for articles in English that were published between January 1, 2010, and January 10, 2023, and that evaluated social media interventions for disseminating research evidence to qualified, postregistration health and social care practitioners in measures of reach, engagement, direct dissemination, or impact. Screening, data extraction, and risk of bias assessments were carried out by at least 2 independent reviewers. Meta-analyses of standardized pooled effects were carried out for between- and within-group effectiveness of social media and comparisons between platforms, formats, and strategies. Certainty of evidence for outcomes was assessed using the GRADE (Grading of Recommendations, Assessment, Development, and Evaluations) framework. RESULTS: In total, 50 mixed-quality articles that were heterogeneous in design and outcome were included (n=9, 18% were randomized controlled trials [RCTs]). Reach (measured in number of practitioners, impressions, or post views) was reported in 26 studies. Engagement (measured in likes or post interactions) was evaluated in 21 studies. Direct dissemination (measured in link clicks, article views, downloads, or altmetric attention score) was analyzed in 23 studies (8 RCTs). Impact (measured in citations or measures of thinking and practice) was reported in 13 studies. Included studies almost universally indicated effects in favor of social media interventions, although effect sizes varied. Cumulative evidence indicated moderate certainty of large and moderate between-group effects of social media interventions on direct dissemination (standardized mean difference [SMD] 0.88; P=.02) and impact (SMD 0.76; P<.001). After social media interventions, cumulative evidence showed moderate certainty of large within-group effects on reach (SMD 1.99; P<.001), engagement (SMD 3.74; P<.001), and direct dissemination (SMD 0.82; P=.004) and low certainty of a small within-group effect on impacting thinking or practice (SMD 0.45; P=.02). There was also evidence for the effectiveness of using multiple social media platforms (including Twitter, subsequently rebranded X; and Facebook), images (particularly infographics), and intensive social media strategies with frequent, daily posts and involving influential others. No included studies tested the dissemination of research evidence to social care practitioners. CONCLUSIONS: Social media was effective for disseminating research evidence to health care practitioners. More intense social media campaigns using specific platforms, formats, and strategies may be more effective than less intense interventions. Implications include recommendations for effective dissemination of research evidence to health care practitioners and further RCTs in this field, particularly investigating the dissemination of social care research. TRIAL REGISTRATION: PROSPERO International Prospective Register of Systematic Reviews CRD42022378793; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=378793. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/45684.

Knowledge sharing among academics from Egyptian medical schools during the COVID-19 pandemic.

BACKGROUND: Sharing knowledge among scientists during global health emergencies is a critical issue. So, this study investigates knowledge-sharing behavior and attitude among staff members of 19 Medical schools in Egyptian universities during the COVID-19 pandemic. METHODS: Across-sectional study was conducted using a web-based questionnaire. A total of 386 replies from the 10,318 distributed questionnaires were analyzed. Descriptive statistics were computed using SPSS (version 22) to summarize the demographic data. Inferential statistics such as the independent and chi-square test were used to achieve the study aims. RESULTS: More than half of the respondents (54.4%) indicated that their levels of knowledge of COVID-19 were good. Most participants (72.5%) reported that scientific publications and international websites were the most reliable source of their knowledge concerning COVID-19. More than 46% stated they sometimes share their knowledge. The lack of time to share and organizational culture were the most important factors that could affect their knowledge sharing. Additionally, about 75% of participants shared knowledge about treatment.

Infografía diálogos de saberes

Los diálogos de saberes, también llamados diálogos interculturales, son procesos de comunicación e intercambio entre personas, grupos o comunidades que provienen de diferentes orígenes o culturas. En el caso del sector de la salud, los intercambios se realizan entre determinados grupos o personas y personal de salud capacitado. Su objetivo es, entre otros, mejorar el acceso a los servicios de salud y construir una salud intercultural, con énfasis en la resolución de problemas previamente planteados y sus causas, la comprensión mutua y la creación de vínculos sólidos. Esta infografía destaca los aspectos principales de los Diálogos de saberes

Identifying strategies to support implementation of interprofessional primary care teams in Nova Scotia: Results of a survey and knowledge sharing event.

BACKGROUND: Interprofessional primary care teams (IPCTs) work together to enhance care. Despite evidence on the benefits of IPCTs, implementation remains challenging. This research aims to 1) identify and prioritize barriers and enablers, and 2) co-develop team-level strategies to support IPCT implementation in Nova Scotia, Canada. METHODS: Healthcare providers and staff of IPCTs were invited to complete an online survey to identify barriers and enablers, and the degree to which each item impacted the functioning of their team. Top ranked items were identified using the sum of frequency x impact for each response. A virtual knowledge sharing event was held to identify strategies to address local barriers and enablers that impact team functioning. RESULTS: IPCT members (n = 117), with a mix of clinic roles and experience, completed the survey. The top three enablers identified were access to technological tools to support their role, standardized processes for using the technological tools, and having a team manager to coordinate collaboration. The top three barriers were limited opportunity for daily team communication, lack of conflict resolution strategies, and lack of capacity building opportunities. IPCT members, administrators, and patients attended the knowledge sharing event (n = 33). Five strategies were identified including: 1) balancing patient needs and provider scope of practice, 2) holding regular and accessible meetings, 3) supporting team development opportunities, 4) supporting professional development, and 5) supporting involvement in non-clinical activities. INTERPRETATION: This research contextualized evidence to further understand local perspectives and experiences of barriers and enablers to the implementation of IPCTs. The knowledge exchange event identified actionable strategies that IPCTs and healthcare administrators can tailor to support teams and care for patients.

News and misinformation consumption: A temporal comparison across European countries.

The Internet and social media have transformed the information landscape, democratizing content access and production. While making information easily accessible, these platforms can also act as channels for spreading misinformation, posing crucial societal challenges. To address this, understanding news consumption patterns and unraveling the complexities of the online information environment are essential. Previous studies highlight polarization and misinformation in online discussions, but many focus on specific topics or contexts, often overlooking comprehensive cross-country and cross-topic analyses. However, the dynamics of debates, misinformation prevalence, and the efficacy of countermeasures are intrinsically tied to socio-cultural contexts. This work aims to bridge this gap by exploring information consumption patterns across four European countries over three years. Analyzing the Twitter activity of news outlets in France, Germany, Italy, and the UK, this study seeks to shed light on how topics of European significance resonate across these nations and the role played by misinformation sources. The results spotlight that while reliable sources predominantly shape the information landscape, unreliable content persists across all countries and topics. Though most users favor trustworthy sources, a small percentage predominantly consumes content from questionable sources, with even fewer maintaining a mixed information diet. The cross-country comparison unravels disparities in audience overlap among news sources, the prevalence of misinformation, and the proportion of users relying on questionable sources. Such distinctions surface not only across countries but also within various topics. These insights underscore the pressing need for tailored studies, crucial in designing targeted and effective countermeasures against misinformation and extreme polarization in the digital space.

Workflow for detecting biomedical articles with underlying open and restricted-access datasets.

To monitor the sharing of research data through repositories is increasingly of interest to institutions and funders, as well as from a meta-research perspective. Automated screening tools exist, but they are based on either narrow or vague definitions of open data. Where manual validation has been performed, it was based on a small article sample. At our biomedical research institution, we developed detailed criteria for such a screening, as well as a workflow which combines an automated and a manual step, and considers both fully open and restricted-access data. We use the results for an internal incentivization scheme, as well as for a monitoring in a dashboard. Here, we describe in detail our screening procedure and its validation, based on automated screening of 11035 biomedical research articles, of which 1381 articles with potential data sharing were subsequently screened manually. The screening results were highly reliable, as witnessed by inter-rater reliability values of ≥0.8 (Krippendorff's alpha) in two different validation samples. We also report the results of the screening, both for our institution and an independent sample from a meta-research study. In the largest of the three samples, the 2021 institutional sample, underlying data had been openly shared for 7.8% of research articles. For an additional 1.0% of articles, restricted-access data had been shared, resulting in 8.3% of articles overall having open and/or restricted-access data. The extraction workflow is then discussed with regard to its applicability in different contexts, limitations, possible variations, and future developments. In summary, we present a comprehensive, validated, semi-automated workflow for the detection of shared research data underlying biomedical article publications.

Does Reader Engagement with Neurosurgery Journal Websites Correlate with the Number of Citations Received by Articles?

BACKGROUND: Medicine has begun adapting to new information-sharing paradigms in the hyper-connected social media era. In this milieu, the role of journal websites in the dissemination of clinical and research information needs to be reevaluated. OBJECTIVE: We sought to explore whether reader engagement with neurosurgical journal websites, reflected by the number of article views and downloads, correlated with the eventual number of citations received by the articles. METHODS: The websites of all Medline indexed neurosurgical journals were screened to identify those that provided information regarding the number of abstract and full text views and downloads. Articles published in these journals between July 2010 and June 2011 were included in this analysis. Various article attributes were identified and the number of citations per article was obtained from Google Scholar. The impact factors of the selected journals for the year 2010 were obtained from the Journal Citation Reports. RESULTS: Twenty-two journals that had published 2527 articles were finally included in this analysis. The number of abstract views, full-text views, and downloads all correlated strongly with the journal impact factors in 2010 as well as the eventual citations per article. The number of article downloads independently predicted the citations per article on multivariate analysis. Neurology India had significantly higher article views and downloads but lower citations per article than the other journals. CONCLUSIONS: Readers were found to engage significantly with neurosurgical journal websites and therefore, open access to articles would lead to increased visibility of articles, resulting in higher citation rates.

[Development of Integrated Database for Experiments and Simulations].

Researchers collect data and use various methods to organize it. Ensuring the reliability and reproducibility of data is crucial, and collaboration across different research fields is on the rise. However, when there is geographical distance, sharing data becomes a challenging task. Therefore, there is a need for the development of a mechanism for sharing data on the web. We have developed an integrated database to facilitate the sharing and management of research data, particularly focusing on small molecules. The integrated database serves as a platform for centralizing data related to small molecules, including their chemical structures, wet lab experimental data, simulation data, and more. It has been constructed as a web application, offering features such as library management for small molecules, registration and viewing of wet lab experiment results, generation of initial conformations for simulations, and data visualization. This enables researchers to efficiently share their research data and collaborate seamlessly, whether within their research group or via cloud-based access that allows project and team members to connect from anywhere. This integrated database plays a critical role in connecting wet lab experiments and simulations, enabling researchers to cross-reference and analyze experimental data comprehensively. It serves as an essential tool to advance research and foster idea generation.

Patient experiences of information-sharing and patient-centred care across the broad landscape of primary care practice and provision: a nationally representative survey of Australian adults.

BACKGROUND: Australian government strategies and frameworks have been developed in recent years to encourage the integration and coordination of primary care delivery; including patient-centred approaches to clinical and preventative care, and health promotion. This study aims to explore patient experiences of information-sharing and patient-centred care across various primary care clinical settings, with a particular focus on clinical encounters with GPs, naturopaths, osteopaths and acupuncturists. METHODS: Data about healthcare utilisation and experiences from a 63-item cross-sectional survey obtained from a nationally representative sample of Australian adults aged ≥ 18 years were analysed. Chi-square and Kruskal-Wallis H tests were used to explore differences in the experiences of knowledge and information sharing during GP consultations among those who also consulted with a naturopath, osteopath or acupuncturist, compared those who had not. Logistic regression was used to investigate correlations between participants perceptions about GP consultation outcomes, and the GP's information-sharing behaviour or perceived experience of patient-centredness. RESULTS: Across 2354 participants, verbal explanation (76.3%) and/or individualised handouts (16.8%) were the most common type of information shared in GP consultations. Individuals who consulted with a GP and a naturopath, an osteopath, or an acupuncturist reported a lower rate of receiving a verbal explanation from their GP but higher rate of receiving other types of information sources including handouts. Over one quarter of study participants who visited a GP did not discuss any of their health information with their GP. Information sharing was lower for individuals who also visited a naturopath, osteopath or acupuncturist. Participants scored their consultations with a GP as patient-centred, but these scores were lower among participants who also consulted with at least one other primary care practitioner type included in the study. CONCLUSIONS: Public health and health services researchers, policymakers and leaders of primary care professions have a role and responsibility to ensure practitioners are confident and competent in sharing health information with their patients that considers their health literacy needs, and the importance of patient-centred care. Research focussed on a more in-depth understanding of the differences and relationships observed across the primary care landscape in this study is recommended.

Fatigue Risk Management Preferences for Consumer Sleep Technologies and Data Sharing in Aviation.

INTRODUCTION: Employees from any type of aviation services industry were asked to give their opinions about the usefulness of consumer sleep technologies (CSTs) during operations and their willingness to share data from CSTs with their organizations for fatigue risk management purposes under a variety of circumstances.METHODS: Respondents provided information about position in aviation and use of CST devices. Respondents ranked sleep issues and feedback metrics by perceived level of importance to operational performance. Respondents rated their likelihood to share data with their organization under a series of hypothetical situations.RESULTS: Between January-July 2023, 149 (N = 149) aviation professionals responded. Pilots comprised 72% (N = 108) of respondents; 84% (N = 125) of all respondents worked short- or medium-haul operations. "Nighttime operations" and "inconsistent sleep routines" ranked as the most important issues affecting sleep. "Sleep quality history" and "projected alertness levels" ranked as most important feedback metrics for personal management of fatigue. Respondents were split between CST users (N = 64) and nonusers (N = 68). CST users did not indicate a strong preference for a specific device brand. The most-reported reason for not using a CST was due to not owning one or no perceived need. Respondents indicated greater likelihood of data sharing under conditions where the device was provided to them by their organization.DISCUSSION: These results suggest that aviation professionals are more concerned about schedule-related disturbances to sleep than they are about endogenous sleep problems. Organizations may be able to increase compliance to data collection for fatigue risk management by providing employees with company-owned CSTs of any brand.Devine JK, Choynowski J, Hursh SR. Fatigue risk management preferences for consumer sleep technologies and data sharing in aviation. Aerosp Med Hum Perform. 2024; 95(5):265-272.

Sharing insect data through GBIF: novel monitoring methods, opportunities and standards.

Technological advancements in biological monitoring have facilitated the study of insect communities at unprecedented spatial scales. The progress allows more comprehensive coverage of the diversity within a given area while minimizing disturbance and reducing the need for extensive human labour. Compared with traditional methods, these novel technologies offer the opportunity to examine biological patterns that were previously beyond our reach. However, to address the pressing scientific inquiries of the future, data must be easily accessible, interoperable and reusable for the global research community. Biodiversity information standards and platforms provide the necessary infrastructure to standardize and share biodiversity data. This paper explores the possibilities and prerequisites of publishing insect data obtained through novel monitoring methods through GBIF, the most comprehensive global biodiversity data infrastructure. We describe the essential components of metadata standards and existing data standards for occurrence data on insects, including data extensions. By addressing the current opportunities, limitations, and future development of GBIF's publishing framework, we hope to encourage researchers to both share data and contribute to the further development of biodiversity data standards and publishing models. Wider commitments to open data initiatives will promote data interoperability and support cross-disciplinary scientific research and key policy indicators. This article is part of the theme issue 'Towards a toolkit for global insect biodiversity monitoring'.

Application of empathy theory in the study of the effectiveness and timeliness of information dissemination in regional public health events.

Introduction: This study examines the role of empathy theory in enhancing the effectiveness and timeliness of information dissemination during regional public health events, with a focus on the SARS and COVID-19 pandemics as case studies. Utilizing an anthropological interview method, the research delves into the public's transformation from passive recipients to active participants in information dissemination, emphasizing the impact of empathy. Objective: The study aims to evaluate the application of empathy theory in the context of public health emergencies and to determine its influence on the quality of information dissemination and public engagement. Methods: The research involved two distinct surveys, each collecting 50 questionnaires from participants in different regions, to capture a diverse range of perspectives. The surveys assessed participants' views on information dissemination, their levels of empathy, and their behaviors in receiving and sharing health-related information. Results: The findings indicate that empathy plays a crucial role in facilitating the active involvement of the public in information dissemination. There is a notable difference in the public's emotional response and information sharing behaviors between regions with direct experience of the health events and those less affected. Conclusion: The study concludes that empathy theory, when applied to information dissemination during public health emergencies, can significantly improve the public's engagement and the overall effectiveness of communication strategies. The results underscore the need for empathetic communication to foster a sense of solidarity and collective action in response to public health crises.

Factors influencing smartwatch use and comfort with health data sharing: a sequential mixed-method study protocol.

INTRODUCTION: Smartwatches have become ubiquitous for tracking health metrics. These data sets hold substantial potential for enhancing healthcare and public health initiatives; it may be used to track chronic health conditions, detect previously undiagnosed health conditions and better understand public health trends. By first understanding the factors influencing one's continuous use of the device, it will be advantageous to assess factors that may influence a person's willingness to share their individual data sets. This study seeks to comprehensively understand the factors influencing the continued use of these devices and people's willingness to share the health data they generate. METHODS AND ANALYSIS: A two-section online survey of smartwatch users over the age of 18 will be conducted (n ≥200). The first section, based on the expectation-confirmation model, will assess factors influencing continued use of smartwatches while the second section will assess willingness to share the health data generated from these devices. Survey data will be analysed descriptively and based on structural equation modelling.Subsequently, six focus groups will be conducted to further understand the issues raised in the survey. Each focus group (n=6) will consist of three smartwatch users: a general practitioner, a public health specialist and an IT specialist. Young smartwatch users (aged 18-44) will be included in three of the focus groups and middle-aged smartwatch users (aged 45-64) will be included in the other three groups. This is to enhance comparison of opinions based on age groups. Data from the focus groups will be analysed using the microinterlocutor approach and an executive summary.After the focus group, participants will complete a brief survey to indicate any changes in their opinions resulting from the discussion. ETHICS AND DISSEMINATION: The results of this study will be disseminated through publication in a peer-reviewed journal, and all associated data will be deposited in a relevant, publicly accessible data repository to ensure transparency and facilitate future research endeavours.This study was approved by the Social Research Ethic Committee (SREC), University College Cork-SREC/SOM/21062023/2.

DS-PACK: Tool assembly for the end-to-end support of controlled access human data sharing.

The EU General Data Protection Regulation (GDPR) requirements have prompted a shift from centralised controlled access genome-phenome archives to federated models for sharing sensitive human data. In a data-sharing federation, a central node facilitates data discovery; meanwhile, distributed nodes are responsible for handling data access requests, concluding agreements with data users and providing secure access to the data. Research institutions that want to become part of such federations often lack the resources to set up the required controlled access processes. The DS-PACK tool assembly is a reusable, open-source middleware solution that semi-automates controlled access processes end-to-end, from data submission to access. Data protection principles are engraved into all components of the DS-PACK assembly. DS-PACK centralises access control management and distributes access control enforcement with support for data access via cloud-based applications. DS-PACK is in production use at the ELIXIR Luxembourg data hosting platform, combined with an operational model including legal facilitation and data stewardship.

Identifying and characterizing superspreaders of low-credibility content on Twitter.

The world's digital information ecosystem continues to struggle with the spread of misinformation. Prior work has suggested that users who consistently disseminate a disproportionate amount of low-credibility content-so-called superspreaders-are at the center of this problem. We quantitatively confirm this hypothesis and introduce simple metrics to predict the top superspreaders several months into the future. We then conduct a qualitative review to characterize the most prolific superspreaders and analyze their sharing behaviors. Superspreaders include pundits with large followings, low-credibility media outlets, personal accounts affiliated with those media outlets, and a range of influencers. They are primarily political in nature and use more toxic language than the typical user sharing misinformation. We also find concerning evidence that suggests Twitter may be overlooking prominent superspreaders. We hope this work will further public understanding of bad actors and promote steps to mitigate their negative impacts on healthy digital discourse.