[Blockchain in health: Transforming security and clinical data management]. / Blockchain en salud: transformando la seguridad y la gestión de datos clínicos.

INTRODUCTION: Technological advances continue to transform society, including the health sector. The decentralized and verifiable nature of blockchain technology presents great potential for addressing current challenges in healthcare data management. DISCUSSION: This article reports on how the generalized adoption of blockchain faces important challenges and barriers that must be addressed, such as the lack of regulation, technical complexity, safeguarding privacy, and economic and technological costs. Collaboration between medical professionals, technologists and legislators is essential to establish a solid regulatory framework and adequate training. CONCLUSION: Blockchain technology has the potential to revolutionize data management in the healthcare sector, improving the quality of medical care, empowering users, and promoting the secure sharing of data, but an important cultural change is needed, along with more evidence, to reveal its advantages in front of the existing technological alternative.

The scope and severity of white-nose syndrome on hibernating bats in North America.

Assessing the scope and severity of threats is necessary for evaluating impacts on populations to inform conservation planning. Quantitative threat assessment often requires monitoring programs that provide reliable data over relevant spatial and temporal scales, yet such programs can be difficult to justify until there is an apparent stressor. Leveraging efforts of wildlife management agencies to record winter counts of hibernating bats, we collated data for 5 species from over 200 sites across 27 U.S. states and 2 Canadian provinces from 1995 to 2018 to determine the impact of white-nose syndrome (WNS), a deadly disease of hibernating bats. We estimated declines of winter counts of bat colonies at sites where the invasive fungus that causes WNS (Pseudogymnoascus destructans) had been detected to assess the threat impact of WNS. Three species undergoing species status assessment by the U.S. Fish and Wildlife Service (Myotis septentrionalis, Myotis lucifugus, and Perimyotis subflavus) declined by more than 90%, which warrants classifying the severity of the WNS threat as extreme based on criteria used by NatureServe. The scope of the WNS threat as defined by NatureServe criteria was large (36% of Myotis lucifugus range) to pervasive (79% of Myotis septentrionalis range) for these species. Declines for 2 other species (Myotis sodalis and Eptesicus fuscus) were less severe but still qualified as moderate to serious based on NatureServe criteria. Data-sharing across jurisdictions provided a comprehensive evaluation of scope and severity of the threat of WNS and indicated regional differences that can inform response efforts at international, national, and state or provincial jurisdictions. We assessed the threat impact of an emerging infectious disease by uniting monitoring efforts across jurisdictional boundaries and demonstrated the importance of coordinated monitoring programs, such as the North American Bat Monitoring Program (NABat), for data-driven conservation assessments and planning.

Alcance y Severidad del Síndrome de Nariz Blanca en los Murciélagos Hibernando en América del Norte Resumen La evaluación del alcance y la severidad de las amenazas es necesaria para los análisis de impacto sobre las poblaciones que se usan para orientar a la planeación de la conservación. La evaluación cuantitativa de amenazas con frecuencia requiere de programas de monitoreo que proporcionen datos confiables en escalas espaciales y temporales, aunque dichos programas pueden ser difíciles de justificar hasta que exista un estresante aparente. Gracias a una movilización de esfuerzos de las agencias de manejo de fauna para registrar los conteos invernales de murciélagos hibernadores, recopilamos datos para cinco especies en más de 200 sitios a lo largos de 27 estados de EUA y dos provincias canadienses entre 1995 y 2018 para determinar el impacto del síndrome de nariz blanca (SNB), una enfermedad mortal de los murciélagos hibernadores. Estimamos declinaciones en los conteos invernales de las colonias de murciélagos en sitios en donde el hongo invasivo que ocasiona el SNB (Pseudogymnoascus destructans) había sido detectado para evaluar el impacto de amenaza del SNB. Tres especies que se encuentran bajo valoración por parte del Servicio de Pesca y Vida Silvestre de los EUA (Myotis septentrionalis, Myotis lucifugus y Perimyotis subflavus) tuvieron una declinación de más del 90%, lo que justifica la clasificación de la severidad de la amenaza del SNB como extrema con base en el criterio usado por NatureServe. El alcance de la amenaza del SNB definido por el criterio de NatureServe fue desde amplio (36% de la distribución de Myotis lucifugus) hasta dominante (79% de la distribución de Myotis septentrionalis) para estas especies. Las declinaciones de otras dos especies (Myotis sodalis y Eptesicus fuscus) fueron menos severas, pero de igual manera quedaron clasificadas desde moderada hasta seria con base en los criterios de NatureServe. El intercambio de datos entre las jurisdicciones proporcionó una evaluación completa del alcance y la severidad de la amenaza del SNB e indicó las diferencias regionales que pueden guiar a los esfuerzos de respuesta realizados en las jurisdicciones internacionales, nacionales, estatales o provinciales. Evaluamos el impacto de amenaza de una enfermedad infecciosa emergente mediante la combinación de los esfuerzos de monitoreo que sobrepasan fronteras jurisdiccionales y demostramos la importancia que tienen para la planeación y la evaluación basadas en datos de la conservación los programas de monitoreo coordinados, como el Programa de Monitoreo de los Murciélagos Norteamericanos (NABat).

Data sharing and re-use in the traumatic stress field: An international survey of trauma researchers.

BACKGROUND: The FAIR data principles aim to make scientific data more Findable, Accessible, Interoperable, and Reusable. In the field of traumatic stress research, FAIR data practices can help accelerate scientific advances to improve clinical practice and can reduce participant burden. Previous studies have identified factors that influence data sharing and re-use among scientists, such as normative pressure, perceived career benefit, scholarly altruism, and availability of data repositories. No prior study has examined researcher views and practices regarding data sharing and re-use in the traumatic stress field. OBJECTIVE: To investigate the perspectives and practices of traumatic stress researchers around the world concerning data sharing, re-use, and the implementation of FAIR data principles in order to inform development of a FAIR Data Toolkit for traumatic stress researchers. METHOD: A total of 222 researchers from 28 countries participated in an online survey available in seven languages, assessing their views on data sharing and re-use, current practices, and potential facilitators and barriers to adopting FAIR data principles. RESULTS: The majority of participants held a positive outlook towards data sharing and re-use, endorsing strong scholarly altruism, ethical considerations supporting data sharing, and perceiving data re-use as advantageous for improving research quality and advancing the field. Results were largely consistent with prior surveys of scientists across a wide range of disciplines. A significant proportion of respondents reported instances of data sharing and re-use, but gold standard practices such as formally depositing data in established repositories were reported as infrequent. The study identifies potential barriers such as time constraints, funding, and familiarity with FAIR principles. CONCLUSIONS: These results carry crucial implications for promoting change and devising a FAIR Data Toolkit tailored for traumatic stress researchers, emphasizing aspects such as study planning, data preservation, metadata standardization, endorsing data re-use, and establishing metrics to assess scientific and societal impact.

Traumatic stress researchers worldwide responding to a survey held generally positive views on data sharing, endorsing scholarly altruism and pro-sharing ethical considerations, and rating data re-use as useful for advancing the field.While many respondents reported instances of sharing or re-using data, gold standard practices such as formally depositing data in established repositories were reported as infrequent.Barriers to data sharing and re-use included time constraints, funding, and a lack of familiarity with practices to make data more Findable, Accessible, Interoperable, and Re-usable (FAIR).

Compartilhamento de dados de pesquisa na Fiocruz: diagnóstico e percepção do pesquisador / Research data sharing at Fiocruz: researcher diagnosis and perception

Este artigo apresenta os resultados parciais de pesquisa em andamento para caracterizar os dados de pesquisa produzidos na Fiocruz e analisar a percepção dos pesquisadores quanto ao compartilhamento e abertura desses dados. Foi utilizado como instrumento de coleta de dados um questionário on-line, aplicado aos pesquisadores da Fiocruz. A análise dos dados obtidos foi baseada no Modelo de Fatores que influenciam a prática de compartir dados de pesquisa. Os resultados parciais indicam as barreiras que interferem na coparticipação de dados de pesquisa e os estímulos à adesão ao movimento Ciência Aberta. É traçado um diagnóstico sobre os dados de pesquisa gerados pelos participantes, que pode subsidiar estratégias para o desenvolvimento de infraestrutura para o compartilhamento de dados de pesquisa na Fiocruz. Verificou-se que a principal barreira é a desinformação dos tipos de compartilhamento das plataformas existentes e das normas vigentes. A maioria dos pesquisadores da Fiocruz compreende a importância do compartilhamento e abertura dos dados de pesquisa, principalmente para a transparência na conduta da pesquisa e otimização do avanço científico.