Assuntos
Disseminação de Informação , Projetos de Pesquisa , Software , Biologia Computacional/métodos , Biologia Computacional/normas , Internet , Software/normas , Software/provisão & distribuição , Interface Usuário-Computador , Reprodutibilidade dos Testes , Disseminação de Informação/métodos , Projetos de Pesquisa/normasRESUMO
BACKGROUND: With the ageing population worldwide, falls are becoming a severe and growing health problem. Interprofessional multifactorial fall prevention interventions (FPIs) have effectively prevented falls in community-dwelling older adults. However, the implementation of FPIs often fails due to a lack of interprofessional collaboration. Therefore, gaining insight into the influencing factors of interprofessional collaboration in multifactorial FPI's for older adults living in the community is essential. Consequently, our aim was to provide an overview of factors influencing interprofessional collaboration in multifactorial FPIs for community-dwelling older adults. METHODS: This qualitative systematic literature research was performed according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Pubmed, CINAHL, and Embase electronic databases have been systematically searched for eligible articles, with a qualitative design. The quality was appraised using the Checklist for Qualitative Research by the Joann Briggs Institute. The findings were inductively synthesized using a meta-aggregative approach. Confidence in the synthesized findings was established using the ConQual methodology. RESULTS: Five articles were included. Analysis of the included studies resulted in 31 influencing factors for interprofessional collaboration, which were labelled as findings. These findings were summarized in ten categories and combined into five synthesized findings. Results showed that communication, role clarity, information sharing, organization, and interprofessional aim influence interprofessional collaboration in multifactorial FPIs. CONCLUSIONS: This review provides a comprehensive summary of findings on interprofessional collaboration, specifically in the context of multifactorial FPIs. Knowledge in this area is considerably relevant given the multifactorial nature of falls, which demands an integrated, multidomain approach, including both health and social care. The results can be utilized as a fundament for developing effective implementation strategies aiming to improve interprofessional collaboration between health and social care professionals working in multifactorial FPIs in the community.
Assuntos
Acidentes por Quedas , Comunicação , Acidentes por Quedas/prevenção & controle , Pesquisa Qualitativa , Vida Independente , Disseminação de InformaçãoRESUMO
The German Medical Informatics Initiative (MII) aims to increase the interoperability and reuse of clinical routine data for research purposes. One important result of the MII work is a German-wide common core data set (CDS), which is to be provided by over 31 data integration centers (DIZ) following a strict specification. One standard format for data sharing is HL7/FHIR. Locally, classical data warehouses are often in use for data storage and retrieval. We are interested to investigate the advantages of a graph database in this setting. After having transferred the MII CDS into a graph, storing it in a graph database and subsequently enriching it with accompanying meta-information, we see a great potential for more sophisticated data exploration and analysis. Here we describe the extract-transform-load process which we set up as a proof of concept to achieve the transformation and to make the common set of core data accessible as a graph.
Assuntos
Registros Eletrônicos de Saúde , Armazenamento e Recuperação da Informação , Disseminação de Informação , Data Warehousing , Bases de Dados Factuais , Nível Sete de SaúdeRESUMO
Data sharing provides benefits in terms of transparency and innovation. Privacy concerns in this context can be addressed by anonymization techniques. In our study, we evaluated anonymization approaches which transform structured data in a real-world scenario of a chronic kidney disease cohort study and checked for replicability of research results via 95% CI overlap in two differently anonymized datasets with different protection degrees. Calculated 95% CI overlapped in both applied anonymization approaches and visual comparison presented similar results. Thus, in our use case scenario, research results were not relevantly impacted by anonymization, which adds to the growing evidence of utility-preserving anonymization techniques.
Assuntos
Anonimização de Dados , Privacidade , Humanos , Estudos de Coortes , Disseminação de Informação , OrganizaçõesRESUMO
Availability and accessibility are important preconditions for using real-world patient data across organizations. To facilitate and enable the analysis of data collected at a large number of independent healthcare providers, syntactic- and semantic uniformity need to be achieved and verified. With this paper, we present a data transfer process implemented using the Data Sharing Framework to ensure only valid and pseudonymized data is transferred to a central research repository and feedback on success or failure is provided. Our implementation is used within the CODEX project of the German Network University Medicine to validate COVID-19 datasets at patient enrolling organizations and securely transfer them as FHIR resources to a central repository.
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COVID-19 , Humanos , Semântica , Disseminação de Informação , Registros Eletrônicos de SaúdeRESUMO
Data sharing is sustainable for several reasons, including minimising economical and human costs or maximising knowledge gain. Still, reuse of biomedical (research) data is often hampered by the diverse technical, juridical, and scientific requirements for biomedical data handling and specifically sharing. We are building a toolbox for automated generation of knowledge graphs (KGs) from diverse sources, for data enrichment, and for data analysis. Into the MeDaX KG prototype, we integrated data from the core data set of the German Medical Informatics Initiative (MII) with ontological and provenance information. This prototype is currently used for internal concept and method testing only. In subsequent versions it will be expanded by including more meta-data and relevant data sources as well as further tools, including a user interface.
Assuntos
Pesquisa Biomédica , Informática Médica , Humanos , Reconhecimento Automatizado de Padrão , Disseminação de Informação , ConhecimentoRESUMO
The need for secure and integrity-preserved data sharing has become increasingly important in the emerging era of changed demands on healthcare and increased awareness of the potential of data. In this research plan, we describe our path to explore the optimal use of integrity preservation in health-related data contexts. Data sharing in these settings is poised to increase health, improve healthcare delivery, improve the offering of services and products from commercial entities, and strengthen healthcare governance, all with a maintained societal trust. The HIE challenges relate to legal boundaries and to the importance of maintaining accuracy and utility in the secure sharing of health-related data.
Assuntos
Atenção à Saúde , Disseminação de Informação , ConfiançaRESUMO
In biomedical research, business processes, such as data-sharing or feasibility queries, span across several healthcare organizations. Due to the growing number of data-sharing projects and connected organizations, the management of distributed processes gets more complex over time. This leads to an increased need for administrating, orchestrating, and monitoring all distributed processes of a single organization. A proof of concept for a decentralized and use case agnostic monitoring dashboard was developed for the Data Sharing Framework, which most German university hospitals have deployed. The implemented dashboard can handle current, changing, and upcoming processes using only information for cross-organizational communication. This differentiates our approach from other existing use case specific content visualizations. The presented dashboard is a promising solution to provide administrators with an overview of the status of their distributed process instances. Therefore, this concept will be further developed in upcoming releases.
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Pesquisa Biomédica , Disseminação de Informação , Humanos , ComunicaçãoRESUMO
Harmonizing medical data sharing frameworks is challenging. Data collection and formats follow local solutions in individual hospitals; thus, interoperability is not guaranteed. The German Medical Informatics Initiative (MII) aims to provide a Germany-wide, federated, large-scale data sharing network. In the last five years, numerous efforts have been successfully completed to implement the regulatory framework and software components for securely interacting with decentralized and centralized data sharing processes. 31 German university hospitals have today established local data integration centers that are connected to the central German Portal for Medical Research Data (FDPG). Here, we present milestones and associated major achievements of various MII working groups and subprojects which led to the current status. Further, we describe major obstacles and the lessons learned during its routine application in the last six months.
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Pesquisa Biomédica , Informática Médica , Humanos , Disseminação de Informação , Software , Hospitais UniversitáriosRESUMO
Information about individual behaviour is collected regularly by organisations. This information has value to businesses, the government and third parties. It is not clear what value this personal data has to consumers themselves. Much of the modern economy is predicated on people sharing personal data, however if individuals value their privacy, they may choose to withhold this data unless the perceived benefits of sharing outweigh the perceived value of keeping the data private. One technique to assess how much individuals value their privacy is to ask them whether they might be willing to pay for an otherwise free service if paying allowed them to avoid sharing personal data. Our research extends previous work on factors affecting individuals' decisions about whether to share personal data. We take an experimental approach and focus on whether consumers place a positive value on protecting their data by examining their willingness to share personal data in a variety of data sharing environments. Using five evaluation techniques, we systematically investigate whether members of the public value keeping their personal data private. We show that the extent to which participants value protecting their information differs by data type, suggesting there is no simple function to assign a value for individual privacy. The majority of participants displayed remarkable consistency in their rankings of the importance of different types of data through a variety of elicitation procedures, a finding consistent with the existence of stable individual privacy preferences in protecting personal data. We discuss our findings in the context of research on the value of privacy and privacy preferences.
Assuntos
Disseminação de Informação , Privacidade , Humanos , Disseminação de Informação/métodos , Confiança , Segurança ComputacionalRESUMO
This study investigates health-promoting messages in British and Saudi officials' social-media discourse during the Coronavirus Disease 2019 (COVID-19) Pandemic. Taking discourse as a constructivist conception, we examined the crisis-response strategies employed by these officials on social media, and the role of such strategies in promoting healthy behaviors and compliance with health regulations. The study presents a corpus-assisted discourse analysis of the tweets of a Saudi health official and a British health official that focuses on keyness, speech acts, and metaphor. We found that both officials utilized clear communication and persuasive rhetorical tactics to convey the procedures suggested by the World Health Organization. However, there were some differences in how the two officials used speech acts and metaphors to achieve their goals. The British official used empathy as the primary communication strategy, while the Saudi official emphasized health literacy. The British official also used conflict-based metaphors such as war and gaming, whereas the Saudi official used metaphors that reflected life as a journey interrupted by the pandemic. Despite these differences, both officials utilized directive speech acts to tell audiences the procedures they should follow to achieve the desired conclusion of healing patients and ending the pandemic. In addition, rhetorical questions and assertions were used to direct people to perform certain behaviors favored. Interestingly, the discourse used by both officials contained characteristics of both health communication and political discourse. War metaphors, which were utilized by the British Health official, are a common feature in political discourse as well as in health-care discourse. Overall, this study highlights the importance of effective communication strategies in promoting healthy behaviors and compliance with health regulations during a pandemic. By analyzing the discourse of health officials on social media, we can gain insights into the strategies employed to manage a crisis and effectively communicate with the public.
Assuntos
COVID-19 , Comunicação em Saúde , Mídias Sociais , Humanos , COVID-19/epidemiologia , Arábia Saudita/epidemiologia , Disseminação de Informação , Linguística , Reino Unido/epidemiologiaRESUMO
The common data model (CDM) is an important tool to facilitate the standardized integration of multi-source heterogeneous healthcare big data, enhance the consistency of data semantic understanding, and promote multi-party collaborative analysis. The data collections standardized by CDM can provide powerful support for observational studies, such as large-scale population cohort study. This paper provides an in-depth comparative analysis of the data storage structure, term mapping pattern, and auxiliary tools development of the three international typical CDMs, then analyzes the advantages and limitations of each CDM and summarizes the challenges and opportunities faced in the CDM application in China. It is expected that exploring the advanced technical concepts and practical patterns of foreign countries in data management and sharing will provide references for promoting FAIR (findable, accessible, interoperable, reusable) construction of healthcare big data in China and solving the current practical problems, such as the poor quality of data resources, the low degree of semantization, and the inabilities of data sharing and reuse.
Assuntos
Big Data , Disseminação de Informação , Humanos , China , Estudos de Coortes , Coleta de DadosAssuntos
COVID-19 , Bases de Dados Genéticas , Genoma Viral , SARS-CoV-2 , Humanos , COVID-19/virologia , Bases de Dados Genéticas/economia , Bases de Dados Genéticas/ética , Bases de Dados Genéticas/normas , Bases de Dados Genéticas/tendências , Disseminação de Informação/ética , Mutação , SARS-CoV-2/genéticaRESUMO
BACKGROUND: Data-sharing is increasingly encouraged or required by funders and journals. Data-sharing is more complicated for lifecourse studies that rely upon ongoing participation, but little is known about perspectives on data-sharing among participants of such studies. The aim of this qualitative study was to explore perspectives on data-sharing of participants in a birth cohort study. METHODS: Semi-structured interviews were conducted with 25 members of the Dunedin Multidisciplinary Health and Development Study when aged between 45 and 48 years. Interviews were led by the Director of the Dunedin Study and involved questions about different scenarios for data-sharing. The sample consisted of nine Dunedin Study members who are Maori (the Indigenous peoples of Aotearoa/New Zealand) and 16 who are non-Maori. RESULTS: Principles of grounded theory were applied to develop a model of participant perspectives on data-sharing. The model consists of three factors that inform a core premise that a one-size-fits-all approach to data-sharing will not suffice in lifecourse research. Participants suggested that data-sharing decisions should depend on the cohort and might need to be declined if any one Dunedin Study member was opposed (factor 1). Participants also expressed a proven sense of trust in the researchers and raised concerns about loss of control once data have been shared (factor 2). Participants described a sense of balancing opportunities for public good against inappropriate uses of data, highlighting variability in perceived sensitivity of data, and thus a need to take this into account if sharing data (factor 3). CONCLUSIONS: Communal considerations within cohorts, loss of control over shared data, and concerns about inappropriate uses of shared data need to be addressed through detailed informed consent before data-sharing occurs for lifecourse studies, particularly where this has not been established from the start of the study. Data-sharing may have implications for the retention of participants in these studies and thus may impact on the value of long-term sources of knowledge about health and development. Researchers, ethics committees, journal editors, research funders, and government policymakers need to consider participants' views when balancing the proposed benefits of data-sharing against the potential risks and concerns of participants in lifecourse research.
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Disseminação de Informação , Consentimento Livre e Esclarecido , Humanos , Pessoa de Meia-Idade , Estudos de Coortes , Teoria Fundamentada , Pesquisa QualitativaRESUMO
Secondary use of medical data for research is desirable for intrinsic, ethical and financial reasons. In this context, the question becomes relevant as to how such datasets are to be made accessible to a larger target group in the long term. Typically, datasets are not extracted ad hoc from the primary systems, because they are processed qualitatively (FAIR data). Special data repositories are currently being built for this purpose. This paper examines the requirements for the reuse of clinical trial data in a data repository utilizing the Open Archiving Information System (OAIS) reference model. In particular, a concept for an Archive Information Package (AIP) is developed with the central focus on a cost-effective trade-off between the effort of creation for the data producer and the comprehensibility of the data for the data consumer.
Assuntos
Ensaios Clínicos como Assunto , Curadoria de Dados , Bases de Dados Factuais , Disseminação de Informação , Gerenciamento de DadosRESUMO
A vitrine "Difusão do Conhecimento Científico em Saúde no âmbito da SES/SP" tem como objetivo principal destacar conteúdos, serviços e recursos informacionais com foco na produção científica e técnica institucional e em ações relevantes que visam contribuir para facilitar o acesso à informação em saúde e subsidiar pesquisadores, gestores e usuários.
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Disseminação de Informação , Bibliotecas DigitaisRESUMO
When the first cases of human infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) were reported from Wuhan, China, in December 2019, there was quick agreement across scientific and health communities that understanding the facts about its emergence would help prevent future outbreaks. Never could I have imagined the degree of politicization that would cloud this quest. Over the past 39 months, while reported deaths from COVID-19 increased to nearly 7 million worldwide, science on the virus's origins has gotten smaller while the politics surrounding this question has grown ever bigger. Last month, the World Health Organization (WHO) learned that scientists in China possessed data on viral samples from Wuhan that had been gathered in January 2020, which should have been shared immediately-not 3 years later-with the global research community. The lack of data disclosure is simply inexcusable. The longer it takes to understand the origins of the pandemic, the harder it becomes to answer the question, and the more unsafe the world becomes.
