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2.
Respir Res ; 25(1): 334, 2024 Sep 09.
Artigo em Inglês | MEDLINE | ID: mdl-39252025

RESUMO

BACKGROUND: The internet is a common source of health information for patients and caregivers. To date, content and information quality of YouTube videos on sarcoidosis has not been studied. The aim of our study was to investigate the content and quality of information on sarcoidosis provided by YouTube videos. METHODS: Of the first 200 results under the search term "sarcoidosis," all English-language videos with content directed at patients were included. Two independent investigators assessed the content of the videos based on 25 predefined key features (content score with 0-25 points), as well as reliability and quality (HONCode score with 0-8 points, DISCERN score with 1-5 points). Misinformation contained in the videos was described qualitatively. RESULTS: The majority of the 85 included videos were from an academic or governmental source (n = 63, 74%), and median time since upload was 33 months (IQR 10-55). Median video duration was 8 min (IQR 3-13) and had a median of 2,044 views (IQR 504 - 13,203). Quality assessment suggested partially sufficient information: mean HONCode score was 4.4 (SD 0.9) with 91% of videos having a medium quality HONCode evaluation. Mean DISCERN score was 2.3 (SD 0.5). Video content was generally poor with a mean of 10.5 points (SD 0.6). Frequently absent key features included information on the course of disease (6%), presence of substantial geographical variation (7%), and importance of screening for extrapulmonary manifestations (11%). HONCode scores were higher in videos from academic or governmental sources (p = 0.003), particularly regarding "transparency of sponsorship" (p < 0.001). DISCERN and content scores did not differ by video category. CONCLUSIONS: Most YouTube videos present incomplete information reflected in a poor content score, especially regarding screening for extrapulmonary manifestations. Quality was partially sufficient with higher scores in videos from academic or governmental sources, but often missing references and citing specific evidence. Improving patient access to trustworthy and up to date information is needed.


Assuntos
Sarcoidose , Mídias Sociais , Gravação em Vídeo , Humanos , Mídias Sociais/normas , Gravação em Vídeo/métodos , Gravação em Vídeo/normas , Sarcoidose/diagnóstico , Educação de Pacientes como Assunto/métodos , Educação de Pacientes como Assunto/normas , Informação de Saúde ao Consumidor/normas , Informação de Saúde ao Consumidor/métodos , Disseminação de Informação/métodos , Internet/normas , Fonte de Informação
3.
JMIR Form Res ; 8: e53978, 2024 Sep 09.
Artigo em Inglês | MEDLINE | ID: mdl-39250219

RESUMO

BACKGROUND: The COVID-19 pandemic underscored the challenge of swiftly disseminating research findings to a global audience. Language barriers further exacerbated disparities in access to timely scientific information, particularly for non-English speaking communities. The majority of COVID-19 research was published in English, limiting accessibility for Spanish-speaking populations. OBJECTIVE: This paper aims to assess the reach and effectiveness of AccesoCovid.com, a platform designed to disseminate up-to-date COVID-19 research in both English and Spanish, addressing the language gap in scientific communication. METHODS: AccesoCovid.com was developed through a partnership between the University of California, San Francisco (UCSF) and Universidad Nacional Autónoma de México (UNAM). The website's performance and user engagement were evaluated using Google Analytics over a span of 2 years. Key metrics included user language preference, geographical distribution, and site traffic. The website summarized and translated 1032 articles on various COVID-19 topics, such as "Pharmaceutical Interventions and Vaccines." RESULTS: From February 2021 to February 2023, the platform attracted 57,000 users. Of the 43,000 unique new visitors, 84.2% (n=36,219) hailed from Spanish-speaking regions. The majority accessed the site organically through search engines, with 88.4% (n=38,000) of users arriving this way, while 5000 (11.6%) users accessed the site directly. Most users (n=30,894, 72.1%) preferred the Spanish version of the site. The website's most accessed category was "Pharmaceutical Interventions and Vaccines," followed by "Clinical Presentation and Management" and "Mental Health." Regarding language distribution, 72.1% (n=30,894) of users primarily used Spanish; 21.4% (n=9215) used English; and 6.7% (n=2891) spoke other languages, including Portuguese, Chinese, and German. Geographically, the website attracted visitors from 179 countries, with the highest visitor counts from Mexico (n=12,342, 28.7%), Spain (n=6405, 14.9%), the United States (n=4416, 10.3%), and Peru (n=3821, 8.9%). CONCLUSIONS: AccesoCovid.com successfully bridged a critical language gap in the dissemination of COVID-19 research. Its success underscores the pressing need for multilingual scientific resources. The platform demonstrated significant user engagement and reach, particularly in Spanish-speaking countries. This highlights the potential for similar platforms to ensure equitable access to scientific knowledge across diverse linguistic communities. Future efforts should focus on expanding to other languages and conducting formal evaluations to enhance user satisfaction and impact.


Assuntos
COVID-19 , Barreiras de Comunicação , Disseminação de Informação , Humanos , COVID-19/epidemiologia , Disseminação de Informação/métodos , Idioma , Pesquisa Biomédica
4.
PLoS One ; 19(9): e0308080, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39264887

RESUMO

This study explores the nuances of information sharing in the context of infodemics, with a concentrated examination of the effects of opinion leaders and information attention on users' disposition towards sharing information during public health emergencies. The research adopts a quantitative methodology, employing Structural Equation Modeling (SEM) to empirically test the proposed hypotheses. By employing a rigorous analytical framework, the research also scrutinizes the mediating role of risk perception in shaping users' intentions to disseminate information related to public health emergencies. Additionally, it investigates the moderating effect of perceived usefulness, shedding light on how it influences the strength of the relationship between information attention and risk perception. The findings underscore the significance for public health communication strategies, emphasizing targeted messaging utilizing trusted opinion leaders and emphasizing information utility to foster responsible sharing. This research contributes to the academic conversation on infodemic management, providing empirical insights to guide policies and practices in mitigating misinformation during public health emergencies.


Assuntos
Emergências , Disseminação de Informação , Saúde Pública , Humanos , Saúde Pública/métodos , Disseminação de Informação/métodos , Meios de Comunicação de Massa , Comunicação , Masculino , Feminino
5.
Geospat Health ; 19(2)2024 Aug 29.
Artigo em Inglês | MEDLINE | ID: mdl-39221813

RESUMO

While more and more health-related data is being produced and published every day, few of it is being prepared in a way that would be beneficial for daily use outside the scientific realm. Interactive visualizations that can slice and condense enormous amounts of multi-dimensional data into easy-to-digest portions are a promising tool that has been under-utilized for health-related topics. Here we present two case studies for how interactive maps can be utilized to make raw health data accessible to different target audiences: i) the European Notifiable Diseases Interactive Geovisualization (ENDIG) which aims to communicate the implementation status of disease surveillance systems across the European Union to public health experts and decision makers, and ii) the Zoonotic Infection Risk in Twente-Achterhoek Map (ZIRTA map), which aims to communicate information about zoonotic diseases and their regional occurrence to general practitioners and other healthcare providers tasked with diagnosing infectious diseases on a daily basis. With these two examples, we demonstrate that relatively straight-forward interactive visualization approaches that are already widely used elsewhere can be of benefit for the realm of public health.


Assuntos
Zoonoses , Humanos , Zoonoses/epidemiologia , Animais , Análise Espaço-Temporal , Saúde Pública , Pessoal de Saúde , União Europeia , Mapeamento Geográfico , Vigilância da População/métodos , Disseminação de Informação , Sistemas de Informação Geográfica
6.
BMC Public Health ; 24(1): 2393, 2024 Sep 03.
Artigo em Inglês | MEDLINE | ID: mdl-39227851

RESUMO

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.


Assuntos
Guias de Prática Clínica como Assunto , Humanos , Alemanha , Neoplasias/terapia , Disseminação de Informação/métodos , Oncologia/normas , Participação dos Interessados
7.
BMC Public Health ; 24(1): 2391, 2024 Sep 03.
Artigo em Inglês | MEDLINE | ID: mdl-39227875

RESUMO

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.


Assuntos
COVID-19 , Poder Familiar , Humanos , COVID-19/epidemiologia , COVID-19/prevenção & controle , Poder Familiar/psicologia , Criança , Estudos Retrospectivos , Maus-Tratos Infantis/psicologia , Feminino , Adulto , Masculino , Pais/psicologia , Disseminação de Informação/métodos , Inquéritos e Questionários , Saúde Global , Pandemias , Pré-Escolar
8.
BMC Med Educ ; 24(1): 960, 2024 Sep 03.
Artigo em Inglês | MEDLINE | ID: mdl-39227936

RESUMO

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.


Assuntos
Educação Médica Continuada , Disseminação de Informação , Aplicativos Móveis , Mídias Sociais , Humanos , Educação Médica Continuada/métodos , Inquéritos e Questionários , Disseminação de Informação/métodos , Índia , Masculino , Feminino , Adulto , Pessoa de Meia-Idade
9.
PLoS One ; 19(9): e0307917, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39231099

RESUMO

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.


Assuntos
Emigração e Imigração , Mídias Sociais , Humanos , Reino Unido , Opinião Pública , Disseminação de Informação/métodos
10.
J Sch Psychol ; 106: 101343, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39251318

RESUMO

As rates of adolescent hospitalization for suicide-related crises increase, so does the urgency for improving adolescent school reintegration. Communication and collaboration are considered key mechanisms for continuity of care during times of transition; however, to date, few studies have identified critical information to share or have explored strategies for navigating challenges to information sharing during and following school reintegration. The present study explored previously hospitalized adolescent (n = 19), parent (n = 19), school professional (n = 19), and hospital professional (n = 19) views of information sharing and their perceptions of facilitators and barriers to this communication. Applied thematic analysis revealed three key themes related to the best information to share across entities, including the (a) need to consider environmental relevance to information (i.e., informing school supports and hospital treatment), (b) importance of considering information unique to each patient's circumstance (i.e., sharing information on a "case-by-case basis"), and (c) duality between families preferring to share minimal information but school professionals desiring the maximum (i.e., less is more vs. more is better). Regarding facilitators and barriers to information sharing, six key themes emerged, including (a) understanding risks and benefits of information sharing; (b) trust in hospitals and schools; (c) mental health stigma; (d) communication processes; (e) navigating individual, family, school, and community contexts; and (f) "push and pull" between privacy and need. Findings inform key considerations for collaborating with families in determining if and what information to share during school reintegration.


Assuntos
Hospitais Psiquiátricos , Disseminação de Informação , Instituições Acadêmicas , Humanos , Adolescente , Masculino , Feminino , Retorno à Escola , Pais/psicologia , Suicídio/psicologia
11.
Sci Rep ; 14(1): 20604, 2024 09 04.
Artigo em Inglês | MEDLINE | ID: mdl-39232044

RESUMO

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.


Assuntos
Neoplasias Pulmonares , Humanos , China , Gravação em Vídeo , Disseminação de Informação/métodos , Fonte de Informação
12.
Nat Commun ; 15(1): 7615, 2024 Sep 02.
Artigo em Inglês | MEDLINE | ID: mdl-39223133

RESUMO

While multiple factors impact disease, artificial intelligence (AI) studies in medicine often use small, non-diverse patient cohorts due to data sharing and privacy issues. Federated learning (FL) has emerged as a solution, enabling training across hospitals without direct data sharing. Here, we present FL-PedBrain, an FL platform for pediatric posterior fossa brain tumors, and evaluate its performance on a diverse, realistic, multi-center cohort. Pediatric brain tumors were targeted due to the scarcity of such datasets, even in tertiary care hospitals. Our platform orchestrates federated training for joint tumor classification and segmentation across 19 international sites. FL-PedBrain exhibits less than a 1.5% decrease in classification and a 3% reduction in segmentation performance compared to centralized data training. FL boosts segmentation performance by 20 to 30% on three external, out-of-network sites. Finally, we explore the sources of data heterogeneity and examine FL robustness in real-world scenarios with data imbalances.


Assuntos
Inteligência Artificial , Neoplasias Encefálicas , Humanos , Criança , Neoplasias Encefálicas/diagnóstico por imagem , Neoplasias Encefálicas/patologia , Adolescente , Feminino , Masculino , Pré-Escolar , Disseminação de Informação/métodos
13.
Radiology ; 312(3): e233057, 2024 09.
Artigo em Inglês | MEDLINE | ID: mdl-39225601

RESUMO

Background Podcasts have become an increasingly popular method of communicating information in medicine, including in radiology. However, the effect of podcasts on the reach of journal articles remains unclear. Purpose To evaluate the influence of Radiology podcasts on the performance metrics, including downloads, citations, and Altmetric Attention Score (AAS), of Radiology articles. Materials and Methods This was a retrospective study. All articles published in the print version of Radiology from January 2021 to December 2022 were reviewed; editorials and case reports were excluded. Articles featured on Radiology podcasts were included in the podcast group. Articles published within the same journal issue and category were the nonpodcast group. Downloads, Google Scholar citations, Dimensions citations, and AAS metrics were recorded. The Mann-Whitney U test was used to compare medians and evaluate differences between older and more recently published articles. Results The podcast group, composed of 88 articles, exhibited significantly higher median values for downloads (PG, 4521.0; nonpodcast group, 2123.0; P < .001), Google Scholar citations (podcast group, 14.5; nonpodcast group, 10.0; P = .01), Dimensions citations (podcast group, 12.0; nonpodcast group, 9.0; P = .01), and AAS (podcast group, 43.0; nonpodcast group, 10.0; P < .001) compared with the nonpodcast group of 378 articles. Within both groups, articles published in the earlier nonpodcast group (January to June 2021) had higher downloads (podcast group, P = .08; nonpodcast group, P < .001), Google Scholar citations (podcast group and nonpodcast group, P < .001), and Dimension citations (podcast group and nonpodcast group, P < .001) than articles from the later period (July to December 2022). AAS markedly increased in recent podcast articles (P = .03), but AAS for nonpodcast articles significantly decreased over time (P = .01). Conclusion Radiology articles featured on the Radiology podcast had greater median metrics, including downloads, Google Scholar citations, Dimensions citations, and AAS, compared with nonpodcast articles, suggesting that podcasts can be an effective method of disseminating and amplifying research within the field of radiology. © RSNA, 2024 See also the editorial by Chu and Nicola in this issue.


Assuntos
Publicações Periódicas como Assunto , Radiologia , Webcasts como Assunto , Humanos , Estudos Retrospectivos , Disseminação de Informação/métodos
14.
JMIR Form Res ; 8: e51513, 2024 Sep 03.
Artigo em Inglês | MEDLINE | ID: mdl-39226540

RESUMO

BACKGROUND: Coronary heart disease (CHD) is a leading cause of death worldwide and imposes a significant economic burden. TikTok has risen as a favored platform within the social media sphere for disseminating CHD-related information and stands as a pivotal resource for patients seeking knowledge about CHD. However, the quality of such content on TikTok remains largely unexplored. OBJECTIVE: This study aims to assess the quality of information conveyed in TikTok CHD-related videos. METHODS: A comprehensive cross-sectional study was undertaken on TikTok videos related to CHD. The sources of the videos were identified and analyzed. The comprehensiveness of content was assessed through 6 questions addressing the definition, signs and symptoms, risk factors, evaluation, management, and outcomes. The quality of the videos was assessed using 3 standardized evaluative instruments: DISCERN, the Journal of the American Medical Association (JAMA) benchmarks, and the Global Quality Scale (GQS). Furthermore, correlative analyses between video quality and characteristics of the uploaders and the videos themselves were conducted. RESULTS: The search yielded 145 CHD-related videos from TikTok, predominantly uploaded by health professionals (n=128, 88.3%), followed by news agencies (n=6, 4.1%), nonprofit organizations (n=10, 6.9%), and for-profit organizations (n=1, 0.7%). Content comprehensiveness achieved a median score of 3 (IQR 2-4). Median values for the DISCERN, JAMA, and GQS evaluations across all videos stood at 27 (IQR 24-32), 2 (IQR 2-2), and 2 (IQR 2-3), respectively. Videos from health professionals and nonprofit organizations attained significantly superior JAMA scores in comparison to those of news agencies (P<.001 and P=.02, respectively), whereas GQS scores for videos from health professionals were also notably higher than those from news agencies (P=.048). Within health professionals, cardiologists demonstrated discernibly enhanced performance over noncardiologists in both DISCERN and GQS assessments (P=.02). Correlative analyses unveiled positive correlations between video quality and uploader metrics, encompassing the positive correlations between the number of followers; total likes; average likes per video; and established quality indices such as DISCERN, JAMA, or GQS scores. Similar investigations relating to video attributes showed correlations between user engagement factors-likes, comments, collections, shares-and the aforementioned quality indicators. In contrast, a negative correlation emerged between the number of days since upload and quality indices, while a longer video duration corresponded positively with higher DISCERN and GQS scores. CONCLUSIONS: The quality of the videos was generally poor, with significant disparities based on source category. The content comprehensiveness coverage proved insufficient, casting doubts on the reliability and quality of the information relayed through these videos. Among health professionals, video contributions from cardiologists exhibited superior quality compared to noncardiologists. As TikTok's role in health information dissemination expands, ensuring accurate and reliable content is crucial to better meet patients' needs for CHD information that conventional health education fails to fulfill.


Assuntos
Doença das Coronárias , Mídias Sociais , Gravação em Vídeo , Estudos Transversais , Humanos , Disseminação de Informação/métodos
15.
Pharmacoepidemiol Drug Saf ; 33(9): e5856, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39233394

RESUMO

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.


Assuntos
Disseminação de Informação , Farmacoepidemiologia , Farmacoepidemiologia/métodos , Humanos , Disseminação de Informação/métodos , Software , Reprodutibilidade dos Testes , Guias como Assunto
16.
Stud Health Technol Inform ; 317: 40-48, 2024 Aug 30.
Artigo em Inglês | MEDLINE | ID: mdl-39234705

RESUMO

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.


Assuntos
Metadados , Humanos , Disseminação de Informação/métodos , Armazenamento e Recuperação da Informação/métodos
17.
Stud Health Technol Inform ; 317: 85-93, 2024 Aug 30.
Artigo em Inglês | MEDLINE | ID: mdl-39234710

RESUMO

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.


Assuntos
Disseminação de Informação , Alemanha , Segurança Computacional , Humanos
18.
Stud Health Technol Inform ; 317: 129-137, 2024 Aug 30.
Artigo em Inglês | MEDLINE | ID: mdl-39234715

RESUMO

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.


Assuntos
COVID-19 , Alemanha , COVID-19/epidemiologia , Humanos , SARS-CoV-2 , Disseminação de Informação , Software , Saúde Pública
19.
Stud Health Technol Inform ; 317: 115-122, 2024 Aug 30.
Artigo em Inglês | MEDLINE | ID: mdl-39234713

RESUMO

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.


Assuntos
Metadados , Alemanha , Humanos , Gerenciamento de Dados , Disseminação de Informação , Software
20.
Psychol Sci ; 35(9): 1025-1034, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39110783

RESUMO

People share information for many reasons. For example, Berger (2011, N = 40) found that undergraduate participants manipulated to have higher physiological arousal were more likely to share a news article with others via email than people who had low arousal. Berger's research is widely cited as evidence of the causal role of arousal in sharing information and has been used to explain why information that induces high-arousal emotions is shared more than information that induces low-arousal emotions. We conducted two replications (N = 111, N = 160) of Berger's study, using the same arousal manipulation but updating the sharing measure to reflect the rise of information sharing through social media. Both studies failed to find an impact of incidental physiological arousal on undergraduate participants' willingness to share news articles on social media. Our studies cast doubt on the idea that incidental physiological arousal-in the absence of other factors-impacts people's decisions to share information on social networking sites.


Assuntos
Nível de Alerta , Mídias Sociais , Humanos , Nível de Alerta/fisiologia , Feminino , Masculino , Adulto Jovem , Adulto , Disseminação de Informação , Emoções/fisiologia
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