Your browser doesn't support javascript.
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 16.034
Filtrar
1.
RECIIS (Online) ; 13(3): 457-470, jul.-set. 2019. ilus
Artigo em Português | LILACS | ID: biblio-1016410

RESUMO

Este artigo discute a emergência de iniciativas ciberativistas centradas na representação política LGBT, assim como a sua contribuição para a consolidação das demandas do movimento e para o aprofundamento da democracia. Com abordagem qualitativa e procedimento monográfico, objetiva-se compreender a atuação da campanha #VoteLGBT, desenvolvida nas redes de comunicação digital distribuída nas eleições de 2014 e 2016. Delimitam-se, como corpus, as ferramentas sociais digitais utilizadas e os conteúdos das publicações realizadas no Facebook. Conclui-se que a iniciativa #VoteLGBT produz uma tripla visibilização (das candidaturas para os eleitores; dos eleitores para os candidatos; das demandas e temáticas para os candidatos e eleitores); expõe desigualdades políticas veladas no próprio regime democrático; cumpre a função, ao usar ferramentas digitais, de aproximar as dimensões civil e política em uma mesma ambiência; busca, ao produzir conteúdo, sensibilizar e convocar os eleitores, demonstrando a legitimidade das pautas e a importância da participação e da representação política.


This article discusses the emergence of cyberactivist initiatives centered on LGBT political representation and its contribution to the consolidation of demands required by that movement and to deepen the democracy. With a qualitative approach and monographic procedure, the objective of this study is to understand the performance of the #VoteLGBT campaign, developed in distributed digital communication networks before the Brazilian elections in 2014 and 2016. It was delimited as corpus the digital social tools used to those campaigns and the contents of the information posted in Facebook. We concluded that the #VoteLGBT initiative produces a triple visibility (of candidates to voters, of voters to candidates, of demands and themes to candidates and voters); exposes veiled political inequalities in the democratic regime itself; in using digital tools, it fulfills the function of approaching the civil and political dimensions in the same environment; in producing content, it seeks to sensitize the voters to LGBT's issues and to choose their representant, demonstrating the legitimacy of those issues and the importance of political participation and representation.


Este artículo discute la emergencia de iniciativas ciberactivistas centradas en la representación política LGBT y su contribución para la consolidación de las demandas del movimiento y para la profundización de la democracia. Con un enfoque cualitativo y un procedimiento monográfico, el objetivo del estudio es comprender la actuación de la campaña #VoteLGBT, desarrollada en redes de comunicación digital distribuida antes de las elecciones brasileñas de 2014 y 2016. Delimitamos como corpus las herramientas sociales digitales utilizadas en las campañas y los contenidos de las informaciones publicadas en Facebook. Concluimos que la iniciativa #VoteLGBT produce una triple visibilidad (de candidatos para votantes, de votantes para candidatos, de demandas y temas para candidatos y votantes); expone desigualdades políticas veladas en el proprio régimen democrático; al emplear herramientas digitales, cumple la función de acercar las dimensiones civil y política en el mismo ambiente; al producir contenido, busca sensibilizar los votantes para las cuestiones LGBT y para elegir sus candidatos , demostrando la legitimidad de los temas y la importancia de la participación y representación política.


Assuntos
Humanos , Acesso à Informação , Iniquidade Social , Minorias Sexuais e de Gênero , Política , Brasil , Comunicação , Democracia , Disseminação de Informação , Identidade de Gênero
2.
Stud Health Technol Inform ; 267: 20-27, 2019 Sep 03.
Artigo em Inglês | MEDLINE | ID: mdl-31483250

RESUMO

In the context of the German Medical Informatics Initiative (MII), where data reuse and data sharing are major goals, cross-site, long-term research on patient care data can only be conducted lawfully with informed patient consent. Thus, the MII consent working group developed a template form for patient information and broad consent based on work that has been done for a former biobank project. The broad consent enables the patient to consent to the use of a wide range of the documented data including research purposes. Therefore, a user-friendly tool is needed which not only supports the storage and maintenance of the patient's consents but also allows him to easily review or withdraw his consents. Furthermore, the tool should allow the patient to review the use of his data in research projects and possible publications. This is why we developed a concept of how such a tool could be integrated into the clinical and research system landscape and implemented a prototype as a proof of concept.


Assuntos
Consentimento Livre e Esclarecido , Participação do Paciente , Humanos , Disseminação de Informação , Masculino
3.
Stud Health Technol Inform ; 264: 1945-1946, 2019 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-31438420

RESUMO

Chronic kidney disease (CKD) is a Public Health problem worldwide. Treatment in complex and depends on patient education to achieve adequate adherence. We describe in this paper novel strategies for patients' education based on internet (youtube and instagram), through videos, images and texts information directed for patients in a project developed in Brazil.


Assuntos
Insuficiência Renal Crônica , Mídias Sociais , Brasil , Educação em Saúde , Humanos , Disseminação de Informação , Internet
4.
Stud Health Technol Inform ; 264: 1968-1969, 2019 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-31438432

RESUMO

With the increase of foreign residents in Japan, most of them are suffering from inadequate health information. In reference to an ethnography, we conducted fieldwork using a participant observation and an interview with 36 foreign Muslim women. Our study clarified they especially needed health information on childcare because of a lack of such information in their native languages, and needed the support of Japanese Muslims because of problems in communication with healthcare personnel.


Assuntos
Disseminação de Informação , Islamismo , Antropologia Cultural , Feminino , Pessoal de Saúde , Humanos , Japão
5.
Stud Health Technol Inform ; 265: 157-162, 2019 Aug 09.
Artigo em Inglês | MEDLINE | ID: mdl-31431592

RESUMO

Policy and regulation seldom keep up with advances in technology. Although data de-identification is seen as a key to protecting one's data, re-identification is often possible. Whether one's data is to be used for care, research, or commercial purposes, individuals are concerned about the use of their information. The authors propose the concept of an information fiduciary for holders of data, describe how it might be applied in a health care context, and outline considerations to determine whether a holder of health care-related information should be regarded as an information fiduciary.


Assuntos
Disseminação de Informação , Privacidade , Confidencialidade , Anonimização de Dados , Humanos
6.
Stud Health Technol Inform ; 264: 1361-1365, 2019 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-31438148

RESUMO

Little is known about data sharing preferences for care and research of behavioral health patients. Eighty-six behavioral health patients (n = 37 Latinos; n = 32 with serious mental illness) completed questionnaires, in either English or Spanish, with items assessing their views on privacy and sensitivity of health record information. Most patients (82.5%) considered mental health information as sensitive. In general, there was a direct correspondence between perceived sensitivity of information and willingness to share with all or some providers. A main motivation for sharing data with providers was improving the patient's own care (77.8%). Most participants (96.5%) indicated they would be extremely to somewhat willing to share their data for research with their care facilities and universities. Follow-up patient interviews are being conducted to further elucidate these findings.


Assuntos
Disseminação de Informação , Privacidade , Confidencialidade , Registros Eletrônicos de Saúde , Humanos , Inquéritos e Questionários
7.
Stud Health Technol Inform ; 264: 1747-1748, 2019 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-31438324

RESUMO

Information sharing in healthcare remains an unsolved problem despite a plethora of standards and architectures. Effective information sharing is difficult because of the heterogeneity of health information users and data sources, organisational, ethical and legislative constraints and the very demanding requirements of clinical practice. This paper argues that the key requirement of a viable sharing architecture is to support trust in the system and between stakeholders. It uses the concept of a "democratic" approach where citizens can control and verify the use and sharing of data about them and identify ways that some of the value extracted from the data could be assigned to the patient themselves. The reasons for the survival of obsolescent methods are used to inform the design of a proposed citizen-centric architecture using blockchain technology.


Assuntos
Confidencialidade , Disseminação de Informação , Segurança Computacional , Armazenamento e Recuperação da Informação , Telefac-Símile
8.
Stud Health Technol Inform ; 264: 1785-1786, 2019 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-31438343

RESUMO

The digitization of health records and cross-institutional data sharing is a necessary precondition to improve clinical research and patient care. The SMITH project unites several university hospitals and medical faculties in order to provide medical informatics solutions for health data integration and cross-institutional communication. In this paper, we focus on requirements elicitation and management for extracting clinical data from heterogeneous subsystems and data integration based on eHealth standards such as HL7 FHIR and IHE profiles.


Assuntos
Instalações de Saúde , Disseminação de Informação , Armazenamento e Recuperação da Informação , Sistemas Computadorizados de Registros Médicos , Telemedicina
9.
Stud Health Technol Inform ; 264: 839-842, 2019 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-31438042

RESUMO

Collection and management of clinical data for administration and analysis is a time-consuming and complex task, especially when multiple data providers been involved. Even if people are willing to take on the burden for it, there is still no mature solution to protect data privacy for distributed data providers. Distributed ledger is an emerging technology that supports decentralized data sharing and management. Based on this, we present a platform which enables distributed and truthful data collection and serves privacy-preserving needs in clinical data management. Our system, built on Hyperledger Fabric, used smart contract to execute data aggregation and provide basic analysis methods. The system used ledger and world status to record data access history and other metadata. This decentralized platform enables data providers to proactively share and protect their data, Thus can simplify clinical data collection procedure and promote efficient collaboration between providers.


Assuntos
Disseminação de Informação , Privacidade , Confidencialidade
10.
World J Microbiol Biotechnol ; 35(9): 139, 2019 Aug 26.
Artigo em Inglês | MEDLINE | ID: mdl-31451943

RESUMO

Exploitation of microbes, especially fungi, has the potential to help humankind meet the UN's sustainable development goals, help feed the worlds growing population and improve bioeconomies of poorer nations. The majority of the world's fungal genetic resources are held in collections in developed countries, primarily within the USA, Europe and Japan. Very little capacity exists in low to middle income countries, which are often rich in biodiversity but lack resources to be able to conserve and exploit their own microbial resources. In this paper we review the current challenges facing culture collections and the challenges of integrating new approaches, the worth of collaborative networks, and the importance of technology, taxonomy and data handling. We address the need to underpin research and development in developing countries through the need to build 'in country' infrastructure to address these challenges, whilst tackling the global challenges to meet the requirements of the research community through the impacts of legislation and the Nagoya protocol on access to biological resources.


Assuntos
Fungos , Desenvolvimento Sustentável/tendências , Biodiversidade , Bases de Dados Genéticas , Fungos/classificação , Fungos/genética , Fungos/isolamento & purificação , Fungos/fisiologia , Disseminação de Informação , Internacionalidade
12.
Stud Health Technol Inform ; 266: 101-107, 2019 Aug 08.
Artigo em Inglês | MEDLINE | ID: mdl-31397309

RESUMO

Information sharing is key to integrated, collaborative, and continuous care. People with a lived experience of mental illness may access several services across the health, mental health and social care sectors, which creates challenges for information sharing. The health informatics community has traditionally not prioritised social care informatics. However, with the growing role of social care in the lives of people with complex health conditions, now is the time when we must consider the articulation between health informatics and social care informatics in Australia. This paper reports the results of a qualitative study to understand the current context of information sharing between health, mental health and social care services. Interviews and focus groups with nine clinicians, caseworkers and support workers were undertaken. Thematic analysis supported the development of several themes. These include the growing role of social care services, the importance of trust and the challenge created by the complexity of conditions people can present with when accessing social care services. To ensure the growing range of social care services do not get left behind with the increasing digitisation of the Australian health system, the health informatics community should prioritise the inclusion of social care informatics in its scope of practice.


Assuntos
Transtornos Mentais , Serviços de Saúde Mental , Austrália , Acesso aos Serviços de Saúde , Humanos , Disseminação de Informação , Saúde Mental
13.
Stud Health Technol Inform ; 266: 142-148, 2019 Aug 08.
Artigo em Inglês | MEDLINE | ID: mdl-31397315

RESUMO

My Health Record (MHR), which is an online health summary for Australians, was changed from the opt-in to the opt-out model, and therefore sparked a vast discussion on Twitter. In order to understand the debate, the information dissemination and the levels of engagement, we have analysed tweets posted from July 2018 to February 2019. In this paper, we report on the findings of the patterns of discussion, the hashtags and the numbers of retweets and likes from different user categories. The results show that the discussion was highly political, and the tweets from the MHR official accounts had lower propagation and engagement than other user groups. This work highlights the implications of using social networking sites (SNSs) to promote large-scale mandatory electronic health record systems.


Assuntos
Mídias Sociais , Austrália , Disseminação de Informação , Recreação , Rede Social
14.
Stud Health Technol Inform ; 264: 596-600, 2019 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-31437993

RESUMO

Security, privacy, transparency, consent, and data sharing are major challenges that healthcare institutions must address today. The explosion of the Internet of Things (IoT), the enactment of the General Data Protection Regulation (GDPR), the growing trend of patients self-managing their diseases, and the eagerness of patients to share their self-collected health data with primary and secondary health organisations further increase the complexity of these challenges. Smart contracts, based on blockchain technology, can be a legitimate approach for addressing these challenges. Smart contracts define rules and penalties in an agreement, enforce those rules, and render them irrevocable. This paper presents a state-of-the-art review (as of May 2018) of the possible usages of smart contracts in healthcare and focuses on data sharing between patients, doctors, and institutions.


Assuntos
Segurança Computacional , Assistência à Saúde , Humanos , Disseminação de Informação , Privacidade , Tecnologia
15.
Stud Health Technol Inform ; 264: 20-24, 2019 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-31437877

RESUMO

Supported by the European Commission under Horizon 2020, mHealth4Afrika is co-designing and validating a modular, multilingual, state-of-the-art health information system addressing primary healthcare requirements in resource constrained environments. mHealth4Afrika has co-designed a comprehensive range of functionality and medical programs in partnership with Ministries of Health, district health officers, clinic managers and primary healthcare workers from urban, rural and deep rural health facilities in Ethiopia, Kenya, Malawi and South Africa. This paper provides insights into how mHealth4Afrika is leveraging HL7 FHIR to support standards-based data exchange and interoperability between Electronic Medical Records and DHIS2. This work is currently being validated in the field.


Assuntos
Registros Eletrônicos de Saúde , Disseminação de Informação , Humanos , Quênia , Malaui , África do Sul
16.
Stud Health Technol Inform ; 264: 93-97, 2019 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-31437892

RESUMO

Media outlets play crucial roles in disseminating health information. Previous studies have examined how health journalism is practiced by reliable and unreliable media outlets. However, most of the existing works are conducted over a relatively small set of samples. In this study, we investigate a large collection (about 30 thousand) of health-related news articles which were published by 29 reliable and 20 unreliable media outlets and identify several differences in health journalism practice. Our analysis shows that there are significant structural, topical, and semantic disparities in the way reliable and unreliable media outlets conduct health journalism. We argue, in this age of 'fake news', these findings will be useful to combat online health disinformation.


Assuntos
Disseminação de Informação , Meios de Comunicação de Massa , Informática Médica
17.
Stud Health Technol Inform ; 264: 1674-1675, 2019 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-31438287

RESUMO

Although the symptoms of food allergy are diverse and sometimes dangerous to life, we have not been able to effectively share information on patients' food allergies. In this study, we developed a program to prescribe the allergic formula for each patient and to establish a series of processes for safe allergenic meal delivery based on the standards and guidelines of food allergy management. We then assessed the utility of the "introduction of food allergy program" by comparing the number of allergic prescriptions before and after the program application for inpatients. Through the development and introduction of the program, all hospital staffs, including medical staff and dieticians, can share information on food allergy patients. Systematic management of food allergy patients from doctor's prescriptions has provided the basis for safe meal preparation.


Assuntos
Hipersensibilidade Alimentar , Alérgenos , Humanos , Disseminação de Informação , Nutricionistas , Prescrições
18.
Yi Chuan ; 41(8): 761-772, 2019 Aug 20.
Artigo em Chinês | MEDLINE | ID: mdl-31447427

RESUMO

Genetic resources are important national strategic resources. Their preservation, protection and rational utilization form a solid foundation to guarantee national security and to build national competitiveness for the future. Due to a relatively late starting point, China is actively catching up with global peers in storing genetic samples and data. In view of this, in 2011 China approved a plan to build its first nation-level comprehensive gene bank, the China National GeneBank (CNGB), and entrusted BGI-Research to implement its construction and operation. It is China's first gene bank for "reading, writing and storing" bioresources. In this paper, we summarize the development of influential platforms at home and abroad, and focus on CNGB's position, mission, and its structure of "Three Banks and Two Platforms". CNGB launched its official operation in September 2016 and aims to develop a world-class, non-profit and strategic platform that supports science and technology development. It has built capacities to store tens of millions of traceable samples and to analyze handreds of thousanda of WGS each year. It has also set up China's first Pb-level digitalization platform and a high-efficient synthesis platform with a production rate of ten million bases per year. Based on such capacities, CNGB has established its open sharing mechanism for biological samples and data, provided public platform services for life science research, and achieved initial results in supporting innovation and development of the bio-industry.


Assuntos
Bases de Dados Genéticas , Pesquisa , China , Disseminação de Informação
19.
J Forensic Leg Med ; 66: 155-161, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31306915

RESUMO

The simultaneous localisation and globalisation of 'terrorist threats' and cross-border criminality have led to increased expansion of surveillance activities and greater cross-border police and judicial cooperation, placing a greater priority on these activities within the political agenda of the EU. In this scenario, the expansion of technological systems for surveillance and monitoring, and the large-scale exchange of citizens' personal data play a pivotal role in the "fight against crime". This paper explores the multiplicity of data protection regimes in different EU Member States within the framework of the Prüm system. While EU regulations establish minimum standards for personal data flows at the transnational level, local and domestic practices are extremely heterogeneous. Based on analysis of 37 interviews conducted with professionals involved in the automated exchange of forensic genetic profiles, this paper provides empirical data that highlights the tensions between the local and the global within DNA data exchanges across the EU. These tensions relate to differentiated sociotechnical imaginaries regarding the protection of personal data flowing between Member-States. In sum, this paper analyses the potential threats to human rights created by the exchange of personal data with regards to issues of privacy and data protection.


Assuntos
Segurança Computacional/legislação & jurisprudência , Bases de Dados de Ácidos Nucleicos , Disseminação de Informação/legislação & jurisprudência , Cooperação Internacional , Privacidade/legislação & jurisprudência , Crime/prevenção & controle , Impressões Digitais de DNA/legislação & jurisprudência , Dermatoglifia , União Europeia , Humanos , Terrorismo/prevenção & controle
20.
Genome Biol ; 20(1): 128, 2019 07 02.
Artigo em Inglês | MEDLINE | ID: mdl-31262363

RESUMO

As the scale of genomic and health-related data explodes and our understanding of these data matures, the privacy of the individuals behind the data is increasingly at stake. Traditional approaches to protect privacy have fundamental limitations. Here we discuss emerging privacy-enhancing technologies that can enable broader data sharing and collaboration in genomics research.


Assuntos
Privacidade Genética , Genômica/ética , Disseminação de Informação/ética , Genoma Humano , Humanos
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA