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1.
Multimedia | Multimedia Resources | ID: multimedia-13168

ABSTRACT

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


Subject(s)
Culturally Competent Care/methods , Social Determinants of Health/standards , Information Dissemination/methods , Population Groups/ethnology
2.
BMC Prim Care ; 25(1): 151, 2024 May 04.
Article in English | MEDLINE | ID: mdl-38704562

ABSTRACT

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.


Subject(s)
Patient-Centered Care , Primary Health Care , Humans , Female , Male , Australia , Adult , Cross-Sectional Studies , Middle Aged , Information Dissemination , Aged , Young Adult , Adolescent , Physician-Patient Relations , Patient Satisfaction
4.
Aerosp Med Hum Perform ; 95(5): 265-272, 2024 May 01.
Article in English | MEDLINE | ID: mdl-38715267

ABSTRACT

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.


Subject(s)
Aviation , Fatigue , Risk Management , Humans , Adult , Male , Female , Middle Aged , Information Dissemination , Aerospace Medicine , Surveys and Questionnaires , Pilots , Sleep/physiology
5.
PLoS One ; 19(5): e0302473, 2024.
Article in English | MEDLINE | ID: mdl-38717975

ABSTRACT

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.


Subject(s)
Communication , Social Media , Humans , Europe , Information Dissemination/methods , Internet , Italy
6.
PLoS One ; 19(5): e0302787, 2024.
Article in English | MEDLINE | ID: mdl-38718077

ABSTRACT

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.


Subject(s)
Biomedical Research , Workflow , Biomedical Research/methods , Humans , Information Dissemination/methods , Access to Information , Reproducibility of Results
8.
Front Cell Infect Microbiol ; 14: 1384809, 2024.
Article in English | MEDLINE | ID: mdl-38774631

ABSTRACT

Introduction: Sharing microbiome data among researchers fosters new innovations and reduces cost for research. Practically, this means that the (meta)data will have to be standardized, transparent and readily available for researchers. The microbiome data and associated metadata will then be described with regards to composition and origin, in order to maximize the possibilities for application in various contexts of research. Here, we propose a set of tools and protocols to develop a real-time FAIR (Findable. Accessible, Interoperable and Reusable) compliant database for the handling and storage of human microbiome and host-associated data. Methods: The conflicts arising from privacy laws with respect to metadata, possible human genome sequences in the metagenome shotgun data and FAIR implementations are discussed. Alternate pathways for achieving compliance in such conflicts are analyzed. Sample traceable and sensitive microbiome data, such as DNA sequences or geolocalized metadata are identified, and the role of the GDPR (General Data Protection Regulation) data regulations are considered. For the construction of the database, procedures have been realized to make data FAIR compliant, while preserving privacy of the participants providing the data. Results and discussion: An open-source development platform, Supabase, was used to implement the microbiome database. Researchers can deploy this real-time database to access, upload, download and interact with human microbiome data in a FAIR complaint manner. In addition, a large language model (LLM) powered by ChatGPT is developed and deployed to enable knowledge dissemination and non-expert usage of the database.


Subject(s)
Microbiota , Humans , Microbiota/genetics , Databases, Factual , Metadata , Metagenome , Information Dissemination , Computational Biology/methods , Metagenomics/methods , Databases, Genetic
9.
Health Soc Care Deliv Res ; 12(12): 1-87, 2024 May.
Article in English | MEDLINE | ID: mdl-38778710

ABSTRACT

Background: Sharing data about patients between health and social care organisations and professionals, such as details of their medication, is essential to provide co-ordinated and person-centred care. While professionals can share data in a number of ways - for example, through shared electronic record systems or multidisciplinary team meetings - there are many factors that make sharing data across the health and social care boundary difficult. These include professional hierarchies, inaccessible electronic systems and concerns around confidentiality. Data-sharing is particularly important for the care of older people, as they are more likely to have multiple or long-term conditions; understanding is needed on how to enable effective data-sharing. Objectives: To identify factors perceived as influencing effective data-sharing, including the successful adoption of interventions to improve data-sharing, between healthcare and social care organisations and professionals regarding the care of older people. Methods: MEDLINE and seven further databases were searched (in March 2023) for qualitative and mixed-methods studies. Relevant websites were searched and citation-chasing completed on included studies. Studies were included if they focused on older people, as defined by the study, and data-sharing, defined as the transfer of information between healthcare and social care organisations, or care professionals, regarding a patient, and were conducted in the United Kingdom. Purposive sampling was used to obtain a final set of studies which were analysed using framework synthesis. Quality appraisal was conducted using the Wallace checklist. Stakeholder and public and patient involvement groups were consulted throughout the project. Results: Twenty-four studies were included; most scored highly on the quality appraisal checklist. Four main themes were identified. Within Goals, we found five purposes of data-sharing: joint (health and social care) assessment, integrated case management, transitions from hospital to home, for residents of care homes, and for palliative care. In Relationships, building interprofessional relationships, and therefore trust and respect, between professionals supported data-sharing, while the presence of professional prejudices and mistrust hindered it. Interorganisational Processes and procedures, such as a shared vision of care and operationalisation of formal agreements, for example data governance, supported data-sharing. Within Technology and infrastructure, the use of technology as a tool supported data-sharing, as did professionals' awareness of the wider care system. There were also specific factors influencing data-sharing related to its purpose; for example, there was a lack of legal frameworks in the area of palliative care. Limitations: Data-sharing was usually discussed in the context of wider initiatives, for example integrated care, which meant the information provided was often limited. The COVID-19 pandemic has had significant impacts on ways of working; none of our included studies were conducted during or since the pandemic. Conclusions: Our findings indicate the importance of building interprofessional relationships and ensuring that professionals are able to share data in multiple ways. Future work: Exploration of the impact of new technologies and ways of working adopted as a result of the COVID-19 pandemic on data-sharing is needed. Additionally, research should explore patient experience and the prevention of digital exclusion among health and social care professionals. Study registration: The protocol was registered on PROSPERO CRD42023416621. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR135660), as part of a series of evidence syntheses under award NIHR130538, and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 12. See the NIHR Funding and Awards website for further award information.


Health and social care organisations and professionals need to share data about older people. Data ­ for example, details of medication ­ can be shared in different ways, for example electronic records systems, team meetings. Sharing data is important, especially for people with multiple or long-term conditions as they may need co-ordinated help from health and social care services. However, professionals often find it difficult to share data. For example, they may have concerns about confidentiality or may not have access to the same electronic record systems. This review investigated factors that influence data-sharing between health and social care. We found 24 studies that used methods such as focus groups or interviews. We found five main purposes of sharing data in the studies: to assess people's need for health and social care to co-ordinate care for people with existing needs to help people move from hospital to home to care for people living in care homes to support end-of-life care. Factors that help health and social care professionals share data include: having trust and respect for each other having suitable policies and processes in place between their organisations having an awareness of why other professionals need data. New technologies can help professionals share data, but they need to be part of the normal way that people work. These findings could help to improve data-sharing as they show that professionals need multiple ways of sharing data. They also suggest more research is needed so that new technology supports data-sharing. Stakeholders ­ for example, doctors, social workers, and public and patient representatives ­ provided feedback throughout the project. The review contains studies published between 1995 and March 2023.


Subject(s)
Information Dissemination , Qualitative Research , Humans , Aged , Social Work/organization & administration , Delivery of Health Care/organization & administration , Patient-Centered Care
10.
PLoS One ; 19(5): e0302201, 2024.
Article in English | MEDLINE | ID: mdl-38776260

ABSTRACT

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.


Subject(s)
Information Dissemination , Social Media , Humans , Information Dissemination/methods , Communication
11.
Expert Rev Clin Pharmacol ; 17(5-6): 433-440, 2024.
Article in English | MEDLINE | ID: mdl-38739460

ABSTRACT

INTRODUCTION: Over the past decade, polypharmacy has increased dramatically. Measurable harms include falls, fractures, cognitive impairment, and death. The associated costs are massive and contribute substantially to low-value health care. Deprescribing is a promising solution, but there are barriers. Establishing a network to address polypharmacy can help overcome barriers by connecting individuals with an interest and expertise in deprescribing and can act as an important source of motivation and resources. AREAS COVERED: Over the past decade, several deprescribing networks were launched to help tackle polypharmacy, with evidence of individual and collective impact. A network approach has several advantages; it can spark interest, ideas and enthusiasm through information sharing, meetings and conversations with the public, providers, and other key stakeholders. In this special report, the details of how four deprescribing networks were established across the globe are detailed. EXPERT OPINION: Networks create links between people who lead existing and/or budding deprescribing practices and policy initiatives, can influence people with a shared passion for deprescribing, and facilitate sharing of intellectual capital and tools to take initiatives further and strengthen impact.This report should inspire others to establish their own deprescribing networks, a critical step in accelerating a global deprescribing movement.


Subject(s)
Deprescriptions , Inappropriate Prescribing , Polypharmacy , Humans , Inappropriate Prescribing/prevention & control , Information Dissemination , Health Policy
12.
PLoS One ; 19(5): e0303828, 2024.
Article in English | MEDLINE | ID: mdl-38781141

ABSTRACT

BACKGROUND: Several factors thwart successful data sharing-ambiguous or fragmented regulatory landscapes, conflicting institutional/researcher interests and varying levels of data science-related expertise are among these. Traditional ethics oversight mechanisms and practices may not be well placed to guarantee adequate research oversight given the unique challenges presented by digital technologies and artificial intelligence (AI). Data-intensive research has raised new, contextual ethics and legal challenges that are particularly relevant in an African research setting. Yet, no empirical research has been conducted to explore these challenges. MATERIALS AND METHODS: We explored REC members' views and experiences on data sharing by conducting 20 semi-structured interviews online between June 2022 and February 2023. Using purposive sampling and snowballing, we recruited representatives across sub-Saharan Africa (SSA). We transcribed verbatim and thematically analysed the data with Atlas.ti V22. RESULTS: Three dominant themes were identified: (i) experiences in reviewing data sharing protocols, (ii) perceptions of data transfer tools and (iii) ethical, legal and social challenges of data sharing. Several sub-themes emerged as: (i.a) frequency of and approaches used in reviewing data sharing protocols, (i.b) practical/technical challenges, (i.c) training, (ii.a) ideal structure of data transfer tools, (ii.b) key elements of data transfer tools, (ii.c) implementation level, (ii.d) key stakeholders in developing and reviewing a data transfer agreement (DTA), (iii.a) confidentiality and anonymity, (iii.b) consent, (iii.c) regulatory frameworks, and (iii.d) stigmatisation and discrimination. CONCLUSIONS: Our results indicated variability in REC members' perceptions, suboptimal awareness of the existence of data protection laws and a unanimously expressed need for REC member training. To promote efficient data sharing within and across SSA, guidelines that incorporate ethical, legal and social elements need to be developed in consultation with relevant stakeholders and field experts, along with the training accreditation of REC members in the review of data-intensive protocols.


Subject(s)
Ethics Committees, Research , Information Dissemination , Information Dissemination/ethics , Africa South of the Sahara , Humans , Ethics, Research , Female , Male
13.
PLoS One ; 19(5): e0303300, 2024.
Article in English | MEDLINE | ID: mdl-38781238

ABSTRACT

Information dissemination has a significant impact on social development. This paper considers that there are many stochastic factors in the social system, which will result in the phenomena of information cross-dissemination and variation. The dual-system stochastic susceptible-infectious-mutant-recovered model of information cross-dissemination and variation is derived from this problem. Afterward, the existence of the global positive solution is demonstrated, sufficient conditions for the disappearance of information and its stationary distribution are calculated, and the optimal control strategy for the stochastic model is proposed. The numerical simulation supports the results of the theoretical analysis and is compared to the parameter variation of the deterministic model. The results demonstrate that cross-dissemination of information can result in information variation and diffusion. Meanwhile, white noise has a positive effect on information dissemination, which can be improved by adjusting the perturbation parameters.


Subject(s)
Information Dissemination , Stochastic Processes , Information Dissemination/methods , Humans , Computer Simulation , Models, Theoretical
14.
Neurol India ; 72(2): 352-357, 2024 Mar 01.
Article in English | MEDLINE | ID: mdl-38691481

ABSTRACT

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.


Subject(s)
Journal Impact Factor , Neurosurgery , Periodicals as Topic , Humans , Periodicals as Topic/statistics & numerical data , Internet , Information Dissemination/methods
15.
Yakugaku Zasshi ; 144(5): 539-543, 2024.
Article in Japanese | MEDLINE | ID: mdl-38692930

ABSTRACT

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.


Subject(s)
Databases, Factual , Information Dissemination , Computer Simulation , Internet , Reproducibility of Results , Small Molecule Libraries
16.
J Med Internet Res ; 26: e48564, 2024 May 15.
Article in English | MEDLINE | ID: mdl-38748460

ABSTRACT

BACKGROUND: The information epidemic emerged along with the COVID-19 pandemic. While controlling the spread of COVID-19, the secondary harm of epidemic rumors to social order cannot be ignored. OBJECTIVE: The objective of this paper was to understand the characteristics of rumor dissemination before and after the pandemic and the corresponding rumor management and debunking mechanisms. This study aimed to provide a theoretical basis and effective methods for relevant departments to establish a sound mechanism for managing network rumors related to public health emergencies such as COVID-19. METHODS: This study collected data sets of epidemic rumors before and after the relaxation of the epidemic prevention and control measures, focusing on large-scale network rumors. Starting from 3 dimensions of rumor content construction, rumor propagation, and rumor-refuting response, the epidemic rumors were subdivided into 7 categories, namely, involved subjects, communication content, emotional expression, communication channels, communication forms, rumor-refuting subjects, and verification sources. Based on this framework, content coding and statistical analysis of epidemic rumors were carried out. RESULTS: The study found that the rumor information was primarily directed at a clear target audience. The main themes of rumor dissemination were related to the public's immediate interests in the COVID-19 field, with significant differences in emotional expression and mostly negative emotions. Rumors mostly spread through social media interactions, community dissemination, and circle dissemination, with text content as the main form, but they lack factual evidence. The preferences of debunking subjects showed differences, and the frequent occurrence of rumors reflected the unsmooth channels of debunking. The χ2 test of data before and after the pandemic showed that the P value was less than .05, indicating that the difference in rumor content before and after the pandemic had statistical significance. CONCLUSIONS: This study's results showed that the themes of rumors during the pandemic are closely related to the immediate interests of the public, and the emotions of the public accelerate the spread of these rumors, which are mostly disseminated through social networks. Therefore, to more effectively prevent and control the spread of rumors during the pandemic and to enhance the capability to respond to public health crises, relevant authorities should strengthen communication with the public, conduct emotional risk assessments, and establish a joint mechanism for debunking rumors.


Subject(s)
COVID-19 , Information Dissemination , Pandemics , COVID-19/prevention & control , COVID-19/epidemiology , Humans , China/epidemiology , Information Dissemination/methods , Pandemics/prevention & control , SARS-CoV-2 , Social Media/statistics & numerical data , Communication
17.
Sci Data ; 11(1): 465, 2024 May 08.
Article in English | MEDLINE | ID: mdl-38719810

ABSTRACT

Myriad policy, ethical and legal considerations underpin the sharing of biological resources, implying the need for standardised and yet flexible ways to digitally represent diverse 'use conditions'. We report a core lexicon of terms that are atomic, non-directional 'concepts of use', called Common Conditions of use Elements. This work engaged biobanks and registries relevant to the European Joint Programme for Rare Diseases and aimed to produce a lexicon that would have generalised utility. Seventy-six concepts were initially identified from diverse real-world settings, and via iterative rounds of deliberation and user-testing these were optimised and condensed down to 20 items. To validate utility, support software and training information was provided to biobanks and registries who were asked to create Sharing Policy Profiles. This succeeded and involved adding standardised directionality and scope annotations to the employed terms. The addition of free-text parameters was also explored. The approach is now being adopted by several real-world projects, enabling this standard to evolve progressively into a universal basis for representing and managing conditions of use.


Subject(s)
Biological Specimen Banks , Humans , Information Dissemination , Registries
18.
Front Public Health ; 12: 1388552, 2024.
Article in English | MEDLINE | ID: mdl-38751587

ABSTRACT

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.


Subject(s)
COVID-19 , Empathy , Information Dissemination , Public Health , Humans , COVID-19/psychology , Surveys and Questionnaires , Male , Female , Adult , SARS-CoV-2 , Middle Aged , Pandemics
20.
Sci Data ; 11(1): 501, 2024 May 15.
Article in English | MEDLINE | ID: mdl-38750048

ABSTRACT

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.


Subject(s)
Information Dissemination , Humans , Access to Information , Computer Security , Software
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