Quality and reliability analysis of migraine Botox treatment information on YouTube.

YouTube (YT) is one of the world's most well recognized video-sharing platforms that appeals to large audiences and is used by individuals to educate themselves on disease diagnosis and treatment alternatives and to distribute health-related information. Videos were searched by typing the terms "migraine botox" and "botox treatment for migraine" on the YT search bar in English. A total of 50 videos were evaluated for each term. Two independent researchers viewed the videos and documented pertinent descriptive attributes of each video, such as the upload date, number of comments, number of dislikes, number of likes, and views. The videos were analyzed and the DISCERN Global Quality Scale (GQS), Journal of the American Medical Association (JAMA) quality, and reliability scores were recorded. A total of 100 videos were assessed. The mean DISCERN score was 3.09, the mean JAMA score was 2.11, and the mean GQS score was 3.25. According to the source, 32% of the videos were uploaded by university/nonprofit physicians or professional organizations. In addition, when the DISCERN, GQS, and JAMA scores of the videos uploaded by health professionals were examined, a statistically significant difference was observed (P = .002, P = .015, and P = .002, respectively). However, no statistically significant relationship was found for the Video Popularity Index score. The reliability and quality scores of the evaluated videos uploaded by healthcare professionals for migraine Botox treatment were high, but the frequency of viewership was low. In our analysis of migraine Botox treatment videos on YT, we observed that the information on migraine Botox treatment had a wide spectrum, high-quality content, and that there were videos that may mislead viewers. In conclusion, we believe that the platform is not sufficient in its entirety, and that it should be supported with renewed, fact-checked, easy-to-understand language, and video-duration optimized videos.

A how-to guide for code sharing in biology.

In 2024, all biology is computational biology. Computer-aided analysis continues to spread into new fields, becoming more accessible to researchers trained in the wet lab who are eager to take advantage of growing datasets, falling costs, and novel assays that present new opportunities for discovery. It is currently much easier to find guidance for implementing these techniques than for reporting their use, leaving biologists to guess which details and files are relevant. In this essay, we review existing literature on the topic, summarize common tips, and link to additional resources for training. Following this overview, we then provide a set of recommendations for sharing code, with an eye toward guiding those who are comparatively new to applying open science principles to their computational work. Taken together, we provide a guide for biologists who seek to follow code sharing best practices but are unsure where to start.

A Perspective on Neuroscience Data Standardization with Neurodata Without Borders.

Neuroscience research has evolved to generate increasingly large and complex experimental data sets, and advanced data science tools are taking on central roles in neuroscience research. Neurodata Without Borders (NWB), a standard language for neurophysiology data, has recently emerged as a powerful solution for data management, analysis, and sharing. We here discuss our labs' efforts to implement NWB data science pipelines. We describe general principles and specific use cases that illustrate successes, challenges, and non-trivial decisions in software engineering. We hope that our experience can provide guidance for the neuroscience community and help bridge the gap between experimental neuroscience and data science. Key takeaways from this article are that (1) standardization with NWB requires non-trivial design choices; (2) the general practice of standardization in the lab promotes data awareness and literacy, and improves transparency, rigor, and reproducibility in our science; (3) we offer several feature suggestions to ease the extensibility, publishing/sharing, and usability for NWB standard and users of NWB data.

Information sharing and channel encroachment in biomass supply chains.

To guarantee the sustainable development of the biomass raw material supply chain, researchers are increasingly focusing on the issue of information asymmetry between biomass power plants and upstream supply chain members. This paper investigates the optimal information sharing strategy for a biomass power plant where farmers choose whether to encroach on the biomass feedstock supply. Using a game theory model, we analyze eight different information sharing scenarios, and the results show that when the encroachment occurs in supply chain channels, information sharing can significantly increase the profits of the entire supply chain. In this case, the power plant should share its demand information with all upstream players to promote the overall benefit of the supply chain. In contrast, when the power plant shares its information only with the middleman, it can maximize its profits, which, however, may not be conducive to the long-term stability of the supply chain. Furthermore, surprisingly, in the absence of channel encroachment, the power plant sharing information with upstream members may harm their profits. This suggests that power plants may need to consider the scope of information sharing more carefully when the farmers choose not to encroach. Finally, we also examine the impact of channel competition intensity on information sharing strategies, and find that when channel competition intensity is low, transparent demand information helps the power plant maximize expected returns. However, in a highly competitive market environment, the power plant should carefully handle information sharing with farmers to avoid damaging their profits.

Africa in the era of pathogen genomics: Unlocking data barriers.

Rapid expansion of pathogen sequencing capacity in Africa has led to a paradigm shift from relying on others to locally generating genomic data and sharing it with the global community. However, several barriers remain to be unlocked for timely processing, analysis, dissemination, and effective use of pathogen sequence data for pandemic prevention, preparedness, and response.

Sharing Is Caring? International Society for Pharmacoepidemiology Review and Recommendations for Sharing Programming Code.

PURPOSE: There is increasing recognition of the importance of transparency and reproducibility in scientific research. This study aimed to quantify the extent to which programming code is publicly shared in pharmacoepidemiology, and to develop a set of recommendations on this topic. METHODS: We conducted a literature review identifying all studies published in Pharmacoepidemiology and Drug Safety (PDS) between 2017 and 2022. Data were extracted on the frequency and types of programming code shared, and other key open science practices (clinical codelist sharing, data sharing, study preregistration, and stated use of reporting guidelines and preprinting). We developed six recommendations for investigators who choose to share code and gathered feedback from members of the International Society for Pharmacoepidemiology (ISPE). RESULTS: Programming code sharing by articles published in PDS ranged from 1.8% in 2017 to 9.5% in 2022. It was more prevalent among articles with a methodological focus, simulation studies, and papers which also shared record-level data. CONCLUSION: Programming code sharing is rare but increasing in pharmacoepidemiology studies published in PDS. We recommend improved reporting of whether code is shared and how available code can be accessed. When sharing programming code, we recommend the use of permanent digital identifiers, appropriate licenses, and, where possible, adherence to good software practices around the provision of metadata and documentation, computational reproducibility, and data privacy.

Evaluating the discoverability of supporting research materials in ClinicalTrials.gov for US federally funded COVID-19 clinical studies.

Objective: The objective of this study was to evaluate the discoverability of supporting research materials, including supporting documents, individual participant data (IPD), and associated publications, in US federally funded COVID-19 clinical study records in ClinicalTrials.gov (CTG). Methods: Study registration records were evaluated for (1) links to supporting documents, including protocols, informed consent forms, and statistical analysis plans; (2) information on how unaffiliated researchers may access IPD and, when applicable, the linking of the IPD record back to the CTG record; and (3) links to associated publications and, when applicable, the linking of the publication record back to the CTG record. Results: 206 CTG study records were included in the analysis. Few records shared supporting documents, with only 4% of records sharing all 3 document types. 27% of records indicated they intended to share IPD, with 45% of these providing sufficient information to request access to the IPD. Only 1 dataset record was located, which linked back to its corresponding CTG record. The majority of CTG records did not have links to publications (61%), and only 21% linked out to at least 1 results publication. All publication records linked back to their corresponding CTG records. Conclusion: With only 4% of records sharing all supporting document types, 12% sufficient information to access IPD, and 21% results publications, improvements can be made to the discoverability of research materials in federally funded, COVID-19 CTG records. Sharing these materials on CTG can increase their discoverability, therefore increasing the validity, transparency, and reusability of clinical research.

Understanding anti-immigration sentiment spreading on Twitter.

Immigration is one of the most salient topics in public debate. Social media heavily influences opinions on immigration, often sparking polarized debates and offline tensions. Studying 220,870 immigration-related tweets in the UK, we assessed the extent of polarization, key content creators and disseminators, and the speed of content dissemination. We identify a high degree of online polarization between pro and anti-immigration communities. We found that the anti-migration community is small but denser and more active than the pro-immigration community with the top 1% of users responsible for over 23% of anti-immigration tweets and 21% of retweets. We also discovered that anti-immigration content spreads also 1.66 times faster than pro-immigration messages and bots have minimal impact on content dissemination. Our findings suggest that identifying and tracking highly active users could curb anti-immigration sentiment, potentially easing social polarization and shaping broader societal attitudes toward migration.

Douyin and Bilibili as sources of information on lung cancer in China through assessment and analysis of the content and quality.

Lung cancer has emerged as a major global public health concern. With growing public interest in lung cancer, online searches for related information have surged. However, a comprehensive evaluation of the credibility, quality, and value of lung cancer-related videos on digital media platforms remains unexamined. This study aimed to assess the informational quality and content of lung cancer-related videos on Douyin and Bilibili. A total of 200 lung cancer-related videos that met the criteria were selected from Douyin and Bilibili for evaluation and analysis. The first step involved recording and analyzing the basic information provided in the videos. Subsequently, the source and type of content for each video were identified. All videos' educational content and quality were then evaluated using JAMA, GQS, and Modified DISCERN. Douyin videos were found to be more popular in terms of likes, comments, favorites, and shares, whereas Bilibili videos were longer in duration (P < .001). The majority of video content on both platforms comprised lung cancer introductions (31/100, 31%), with medical professionals being the primary source of uploaded videos (Douyin, n = 55, 55%; Bilibili, n = 43, 43%). General users on Douyin scored the lowest on the JAMA scale, whereas for-profit businesses scored the highest (2.50 points). The results indicated that the videos' informational quality was insufficient. Videos from science communications and health professionals were deemed more reliable regarding completeness and content quality compared to videos from other sources. The public should exercise caution and consider the scientific validity when seeking healthcare information on short video platforms.

Semi-Automatic Export of Electrophysiological Metadata to NFDI4Health Local Data Hubs: Use Case of Microneurography odML-Tables - A Technical Case Report.

INTRODUCTION: The Local Data Hub (LDH) is a platform for FAIR sharing of medical research (meta-)data. In order to promote the usage of LDH in different research communities, it is important to understand the domain-specific needs, solutions currently used for data organization and provide support for seamless uploads to a LDH. In this work, we analyze the use case of microneurography, which is an electrophysiological technique for analyzing neural activity. METHODS: After performing a requirements analysis in dialogue with microneurography researchers, we propose a concept-mapping and a workflow, for the researchers to transform and upload their metadata. Further, we implemented a semi-automatic upload extension to odMLtables, a template-based tool for handling metadata in the electrophysiological community. RESULTS: The open-source implementation enables the odML-to-LDH concept mapping, allows data anonymization from within the tool and the creation of custom-made summaries on the underlying data sets. DISCUSSION: This concludes a first step towards integrating improved FAIR processes into the research laboratory's daily workflow. In future work, we will extend this approach to other use cases to disseminate the usage of LDHs in a larger research community.

Handling Complexity in Decentralized Research Networks: The Data Sharing Framework Allowlist Management Application.

INTRODUCTION: With the establishment of the Data Sharing Framework (DSF) as a distributed business process engine in German research networks, it is becoming increasingly important to coordinate authentication, authorization, and role information between peer-to-peer network components. This information is provided in the form of an allowlist. This paper presents a concept and implementation of an Allowlist Management Application. STATE OF THE ART: In research networks using the DSF, allowlists were initially generated manually. CONCEPT: The Allowlist Management Application provides comprehensive tool support for the participating organizations and the administrators of the Allowlist Management Application. It automates the process of creating and distributing allowlists and additionally reduces errors associated with manual entries. In addition, security is improved through extensive validation of entries and enforcing review of requested changes by implementing a four-eyes principle. IMPLEMENTATION: Our implementation serves as a preliminary development for the complete automation of onboarding and allowlist management processes using established frontend and backend frameworks. The application has been deployed in the Medical Informatics Initiative and the Network University Medicine with over 40 participating organizations. LESSONS LEARNED: We learned the need for user guidance, unstructured communication in a structured tool, generalizability, and checks to ensure that the tool's outputs have actually been applied.

The German Central Health Study Hub - A Service to Find and Publish Clinical, Public Health and Epidemiolocal Studies and Associated Documents.

INTRODUCTION: The German Central Health Study Hub is a service that was initially developed at short notice during the COVID-19 pandemic. Since then, it has been expanded in scope, content, active users and functionality. The service is aimed at two main audiences: data provider and data consumers. The former want to share research data from clinical, public health and epidemiological studies and related documents according to the FAIR criteria for research data, and the latter want to find and ultimately reuse relevant research data in the above areas. METHODS: The service connects both groups via graphical and programmatic interfaces. A sophisticated information model is employed to describe and publish various research data objects while obeying data protection and fulfilling FAIR requirements. The service is being developed in a demand-driven manner with extensive user interaction. RESULTS: A free-to-use service, built on open-source software (Dataverse, MICA, Keycloak), accessible via a web-browser. In close collaboration with users several features (ranging from collection to group items to combined data capture via API and UI) were created. The adoption of the service increases continuously and results in over 1,970 research data objects in June 2024. CONCLUSION: The service fills a marked gap and connects both user groups, yet it still needs to be improved in various dimensions (features, content, usage). The impact on the community needs to be further assessed. Despite recent legislative changes (GDNG, EHDS), the system improves the findability of sensitive data, provides a blueprint for similar systems and shows how to create a useful and user-friendly service together with users.

NFDI4Health Local Data Hubs Implementing a Tailored Metadata Schema for Health Data.

INTRODUCTION: NFDI4Health is a consortium funded by the German Research Foundation to make structured health data findable and accessible internationally according to the FAIR principles. Its goal is bringing data users and Data Holding Organizations (DHOs) together. It mainly considers DHOs conducting epidemiological and public health studies or clinical trials. METHODS: Local data hubs (LDH) are provided for such DHOs to connect decentralized local research data management within their organizations with the option of publishing shareable metadata via centralized NFDI4Health services such as the German central Health Study Hub. The LDH platform is based on FAIRDOM SEEK and provides a complete and flexible, locally controlled data and information management platform for health research data. A tailored NFDI4Health metadata schema for studies and their corresponding resources has been developed which is fully supported by the LDH software, e.g. for metadata transfer to other NFDI4Health services. RESULTS: The SEEK platform has been technically enhanced to support extended metadata structures tailored to the needs of the user communities in addition to the existing metadata structuring of SEEK. CONCLUSION: With the LDH and the MDS, the NFDI4Health provides all DHOs with a standardized and free and open source research data management platform for the FAIR exchange of structured health data.

Recommendations to improve use and dissemination of patient versions of oncological clinical practice guidelines in Germany: results of a multi-stakeholder workshop.

BACKGROUND: Oncological patients have high information needs that are often unmet. Patient versions of oncological clinical practice guidelines (PVG) translate clinical practice guidelines into laypersons' language and might help to address patients' information needs. Currently, 30 oncological PVG have been published in Germany and more are being developed. Following a large multi-phase project on oncological PVGs in Germany, recommendations to improve use and dissemination of PVG were adopted in a multi-stakeholder workshop. METHODS: Organisations representing users of PVGs (patients, medical personnel, and multipliers), creators, initiators/funding organisations of PVGs, and organisations with methodological expertise in the development of clinical practice guidelines or in patient health information were invited to participate. The workshop included a World Café for discussion of pre-selected recommendations and structured consensus procedure for of all recommendations. Recommendations with agreement of > 75% were approved, and in case of ≤ 75% agreement, recommendations were rejected. RESULTS: The workshop took place on 24th April 2023 in Cologne, Germany. Overall, 23 people from 24 organisations participated in the discussion. Of 35 suggested recommendations 28 recommendations reached consensus and were approved. The recommendations referred to the topics dissemination (N = 13), design and format (N = 7), (digital) links (N = 5), digitalisation (N = 4), up-to-dateness (N = 3), and use of the PVG in collaboration between healthcare providers and patients (N = 3). CONCLUSION: The practical recommendations consider various perspectives and can help to improve use and dissemination of oncological PVG in Germany. The inclusion of different stakeholders could facilitate the transfer of the results into practice.

Innovate! Accelerate! Evaluate! Harnessing the RE-AIM framework to examine the global dissemination of parenting resources during COVID-19 to more than 210 million people.

BACKGROUND: Parents were at the forefront of responding to the needs of children during the COVID-19 pandemic. This study used the RE-AIM framework to examine the Reach, Effectiveness, Adoption, Implementation, and Maintenance of a global inter-agency initiative that adapted evidence-based parenting programs to provide immediate support to parents. METHODS: Data were collected via short surveys sent via email, online surveys, and analysis of social media metrics and Google Analytics. Retrospective surveys with 1,303 parents and caregivers in 11 countries examined impacts of the resources on child maltreatment, positive relationship building, parenting efficacy, and parenting stress. RESULTS: The parenting resources were translated into over 135 languages and dialects; reached an estimated minimum 212.4 million people by June 2022; were adopted by 697 agencies, organizations, and individuals; and were included in 43 national government COVID-19 responses. Dissemination via social media had the highest reach (n = 144,202,170, 67.9%), followed by radio broadcasts (n = 32,298,525, 15.2%), text messages (n = 13,565,780, 6.4%), and caseworker phone calls or visits (n = 8,074,787, 3.8%). Retrospective surveys showed increased parental engagement and play, parenting self-efficacy, confidence in protecting children from sexual abuse, and capacity to cope with stress, as well as decreased physical and emotional abuse. Forty-four organizations who responded to follow-up surveys in April 2021 reported sustained use of the resources as part of existing services and other crisis responses. CONCLUSION: This study highlights the importance of a) establishing an international collaboration to rapidly adapt and disseminate evidence-based content into easily accessible resources that are relevant to the needs of parents; b) creating open-source and agile delivery models that are responsive to local contexts and receptive to further adaptation; and c) using the best methods available to evaluate a rapidly deployed global emergency response in real-time. Further research is recommended to empirically establish the evidence of effectiveness and maintenance of these parenting innovations.

Leveraging the use of a social media app as a collaborative medical information and knowledge sharing tool-insights from experiential use and survey of a CME WhatsApp community.

BACKGROUND AND AIM: Continuing Medical Education (CME) is crucial for physicians to stay current in the rapidly advancing field of medicine. A WhatsApp (WA) based community of physicians was initiated in 2016 'WhatsApp CME India Group' to facilitate learning, knowledge sharing, and discussion among physicians. Due to participant size constraints of the technology, it evolved into seven distinct WA groups, overseen by a central administrator. A survey undertaken in the group's 7th year aimed to evaluate its effectiveness in achieving its goals, measure participant engagement, and uncover the primary factors driving its usage. METHODS: The survey questionnaire was distributed to 3500 members across the 07 WhatsApp CME groups for voluntary participation. Data collected was analysed using SPSS version 24.0 (SPSS Inc., Chicago, IL, USA) and reported using descriptive statistics. RESULTS: Among the 581 survey respondents, the study found 43% of physicians use the WhatsApp academic groups for CME content, with 32% accessing their group over four times daily. The primary motivation for 77% was to discuss challenging cases and to gain knowledge updates from fellow physician (70%). Medical websites (57%), referral books (49%), and Google (43%) were other significant resources. Every participant (100%) found the WhatsApp CME India group the most beneficial resource for daily medical science updates. A significant portion (57%) of the respondents found the group valuable for real-time information exchange. Over 78% stated it kept them current with knowledge and guidelines. Notably, 94% viewed WhatsApp CME as complementary to physical conferences, not a replacement. The post-conference/webinar summaries were appreciated by 81% participants. Case discussions (31%) and update posts from fellow physicians sharing their insights and learnings (24%) were noted as activities of great academic interest. CONCLUSION: This study underscores the potential of digital platforms like WhatsApp in supplementing CME in India and potentially other comparable settings. The blend of digital and traditional resources suggests a balanced learning approach. While real-time engagement is a strength, challenges like information overload and privacy concerns require careful management. Striking a balance is crucial for ensuring content quality, structured discussions and privacy. As the digital age advances, professionals must critically assess shared information on these platforms to guarantee evidence-based and reliable knowledge dissemination. TRIAL REGISTRATION: ARK 001.