When Parents Request Nondisclosure: Rights of Adolescents to Access Their Health Information and Implications of the 21st Century Cures Act Final Rule.

AbstractDespite broad ethical consensus supporting developmentally appropriate disclosure of health information to older children and adolescents, cases in which parents and caregivers request nondisclosure continue to pose moral dilemmas for clinicians. State laws vary considerably regarding adolescents' rights to autonomy, privacy, and confidentiality, with many states not specifically addressing adolescents' right to their own healthcare information. The requirements of the 21st Century Cures Act have raised important ethical concerns for pediatricians and adolescent healthcare professionals regarding the protection of adolescent privacy and confidentiality, given requirements that chart notes and results be made readily available to patients via electronic portals. Less addressed have been the implications of the act for adolescents' access to their health information, since many healthcare systems' electronic portals are available to patients beginning at age 12, sometimes requiring that the patients themselves authorize their parents' access to the same information. In this article, we present a challenging case of protracted disagreement about an adolescent's right to honest information regarding his devastating prognosis. We then review the legal framework governing adolescents' rights to their own healthcare information, the limitations of ethics consultation to resolve such disputes, and the potential for the Cures Act's impact on electronic medical record systems to provide one form of resolution. We conclude that although parents in cases like the one presented here have the legal right to consent to medical treatment on their children's behalf, they do not have a corresponding right to direct the withholding of medical information from the patient.

Workflow for detecting biomedical articles with underlying open and restricted-access datasets.

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.

Quality and Accessibility of Liquid Biopsy Information.

This cross-sectional study evaluates the information on a circulating tumor DNA test available to the public on popular internet resources.

A qualitative interview study to determine barriers and facilitators of implementing automated decision support tools for genomic data access.

Data access committees (DAC) gatekeep access to secured genomic and related health datasets yet are challenged to keep pace with the rising volume and complexity of data generation. Automated decision support (ADS) systems have been shown to support consistency, compliance, and coordination of data access review decisions. However, we lack understanding of how DAC members perceive the value add of ADS, if any, on the quality and effectiveness of their reviews. In this qualitative study, we report findings from 13 semi-structured interviews with DAC members from around the world to identify relevant barriers and facilitators to implementing ADS for genomic data access management. Participants generally supported pilot studies that test ADS performance, for example in cataloging data types, verifying user credentials and tagging datasets for use terms. Concerns related to over-automation, lack of human oversight, low prioritization, and misalignment with institutional missions tempered enthusiasm for ADS among the DAC members we engaged. Tensions for change in institutional settings within which DACs operated was a powerful motivator for why DAC members considered the implementation of ADS into their access workflows, as well as perceptions of the relative advantage of ADS over the status quo. Future research is needed to build the evidence base around the comparative effectiveness and decisional outcomes of institutions that do/not use ADS into their workflows.

The role of the (in)accessibility of social media data for infodemic management: a public health perspective on the situation in the European Union in March 2024.

Public health institutions rely on the access to social media data to better understand the dynamics and impact of infodemics - an overabundance of information during a disease outbreak, potentially including mis-and disinformation. The scope of the COVID-19 infodemic has led to growing concern in the public health community. The spread of harmful information or information voids may negatively impact public health. In this context, social media are of particular relevance as an integral part of our society, where much information is consumed. In this perspective paper, we discuss the current state of (in)accessibility of social media data of the main platforms in the European Union. The European Union's relatively new Digital Services Act introduces the obligation for platforms to provide data access to a wide range of researchers, likely including researchers at public health institutions without formal academic affiliation. We examined eight platforms (Facebook, Instagram, LinkedIn, Pinterest, Snapchat, TikTok, X, YouTube) affected by the new legislation in regard to data accessibility. We found that all platforms apart from TikTok offer data access through the Digital Services Act. Potentially, this presents a fundamentally new situation for research, as before the Digital Services Act, few platforms granted data access or only to very selective groups of researchers. The access regime under the Digital Services Act is, however, still evolving. Specifics such as the application procedure for researcher access are still being worked out and results can be expected in spring 2024. The impact of the Digital Services Act on research will therefore only become fully apparent in the future.

Laws governing access to sexual health services and information: contents, protections, and restrictions.

Access to sexual health services and information is critical to achieving the highest attainable standard of sexual health, and enabling legal environments are key to advancing progress in this area. In determining overall alignment with human rights standards to respect, protect, and fulfil sexual health-related rights without discrimination, there are many aspects of laws, including their specificity and content, which impact which sexual health services and information are availed, which are restricted, and for whom. To understand the nature of existing legal provisions surrounding access to sexual health services and information, we analysed the content of 40 laws in English, French, and Spanish from 18 countries for the specific sexual health services and information to which access is ensured or prohibited, and the non-discrimination provisions within these laws. Overall, there was wide variation across countries in the types of laws covering these services and the types and number of services and information ensured. Some countries covered different services through multiple laws, and most of the laws dedicated specifically to sexual health addressed only a narrow aspect of sexual health and covered a small range of services. The protected characteristics in non-discrimination provisions and the specificity of these provisions with regard to sexual health services also varied. Findings may inform national legal and policy dialogues around sexual health to identify opportunities for positive change, as well as to guide further investigation to understand the relationship between such legal provisions, the implementation of these laws within countries, and relevant sexual health outcomes.

Access to sexual health services and information is important to being able to have good sexual health. Laws are relevant because what they include and how specific they are affects what types of sexual health services people can access, what types of services are illegal, and whether or not all people can access services equally. We reviewed 40 laws in English, French, and Spanish from 18 countries to understand how many and which sexual health services and information countries ensure in their laws, which sexual health services are illegal, and which people are protected from discrimination in accessing these services. We found that countries use many different types of laws to ensure access to sexual health services or information, and most countries do not cover the same types or number of sexual health services. There are also differences in which people are specifically protected from discrimination in the laws we reviewed. These findings are important because they may help countries identify ways that access to sexual health services and information could be improved so as to improve people's sexual health. They may also guide future research.

Open Notes Experiences of Parents in the Pediatric ICU.

OBJECTIVE: We examined how parents experience and navigate open access to clinical notes ("open notes") in their child's electronic health record and explored their interactions with clinicians during an ICU admission. METHODS: We performed a qualitative analysis using semistructured interviews of English-speaking parents who accessed their child's clinical notes during a pediatric ICU (general or cardiac) admission. We included patient-parent dyads with an ICU admission ≥48 hours between April 2021 and December 2022, note access by proxy timestamp during the ICU course, and either patient age <12 years or incapacitated adolescent ages 12 to 21 years. Purposive sampling was based on sociodemographic and clinical characteristics. Phone interviews were audio-recorded, transcribed, and analyzed using inductive thematic codebook analysis. RESULTS: We interviewed 20 parents and identified 2 thematic categories, outcomes and interactions, in parents accessing clinical notes. Themes of outcomes included applied benefits, psychosocial and emotional value, and negative consequences. Themes of interactions included practical limitations and parental approach and appraisal. The ICU context and power dynamics were a meta-theme, influencing multiple themes. All parents reported positive qualities of note access despite negative consequences related to content, language, burdens, and lack of support. Parents suggested practice and design improvements surrounding open note access. CONCLUSIONS: Parental experiences with open notes reveal new, unaddressed considerations for documentation access, practices, and purpose. Parents leverage open notes by negotiating between the power dynamics in the ICU and the uncertain boundaries of their role and authority in the electronic health record.

Will Generative AI Tools Improve Access to Reliable Health Information?

This Medical News article is an interview with JAMA Editor in Chief Kirsten Bibbins-Domingo and Virologist Davey Smith, head of the Division of Infectious Diseases and Global Public Health at the University of California, San Diego.

Change in injury pattern with mandatory, referred access compared to open access in an emergency department.

INTRODUCTION: This retrospective cohort study aimed to examine whether implementing mandatory referral changed the composition of patients visiting the Accident and Emergency (A and E) Department in relation to severity, demographics and activity at injury. METHODS: Patients visiting the A and E Department at Odense University Hospital, Denmark, in 2008-2019, were divided into three time periods: before (four years before any changes in the operation of the A and E), transition period (the four years during which mandatory referral and the centralised emergency medical service were implemented) and after (the four years after these changes had been implemented). The incidence rate ratios and odds were calculated. RESULTS: The absolute number of severe injuries declined, but to a lesser extent than the number of minor injuries. The incidence rate ratios throughout all subcategories, including severity, fracture, sex, age and activity at injury, indicate a smaller risk of visiting the A and E Department in the after period than in the before period, with a total lower (0.82 times; 95% confidence interval: 0.82-0.83 times) risk of visiting the A and E Department in the after period than in the before period. CONCLUSIONS: Changing from open to referred access altered the composition of injuries for patients seen in the A and E Department, indicating a smaller risk of a visit with referred access than with open access. The odds of a visit being due to a major injury increased after implementing referred access, and the number of visits decreased. FUNDING: The Nordentoft Fund TRIAL REGISTRATION. Not relevant.

Lactiplantibacillus (Lactobacillus) plantarum as a Complementary Treatment to Improve Symptomatology in Neurodegenerative Disease: A Systematic Review of Open Access Literature.

This systematic review addresses the use of Lactiplantibacillus (Lactobacillus) plantarum in the symptomatological intervention of neurodegenerative disease. The existence of gut microbiota dysbiosis has been associated with systemic inflammatory processes present in neurodegenerative disease, creating the opportunity for new treatment strategies. This involves modifying the strains that constitute the gut microbiota to enhance synaptic function through the gut-brain axis. Recent studies have evaluated the beneficial effects of the use of Lactiplantibacillus plantarum on motor and cognitive symptomatology, alone or in combination. This systematic review includes 20 research articles (n = 3 in human and n = 17 in animal models). The main result of this research was that the use of Lactiplantibacillus plantarum alone or in combination produced improvements in symptomatology related to neurodegenerative disease. However, one of the studies included reported negative effects after the administration of Lactiplantibacillus plantarum. This systematic review provides current and relevant information about the use of this probiotic in pathologies that present neurodegenerative processes such as Alzheimer's disease, Parkinson's disease and Multiple Sclerosis.

Implementation of a Novel Residency-Based Electrocardiogram Curriculum Based on Free Open Access Content.

BACKGROUND: Interpretation of the electrocardiogram (ECG) is fundamental in the practice and teaching of emergency medicine. Previous studies have shown that providers of all levels have expressed interest in additional education with ECGs. Asynchronous learning has been shown to be beneficial for improving residents' ability to recognize findings of acute myocardial ischemia. OBJECTIVES: The goal of the study was to know whether a new format based on free, online content would improve residents' ability to interpret ECGs. METHODS: In this 1-year educational pilot study at a single urban teaching hospital, resident physicians participated in a longitudinal curriculum based on free, online content, which was delivered to them electronically on a weekly basis. The study was conducted during the 2016-2017 academic year. Prior to and after the study period, their subjective attitudes toward ECG interpretation, and their objective ability to interpret them successfully, were assessed. RESULTS: Of 42 residents, 25 (59.5%) completed the pre- and post-ECG testing. During the study period, trainees demonstrated improvement in both their subjective attitude toward ECG interpretation and their objective ability to interpret various abnormalities. CONCLUSIONS: Despite some important limitations, we believe this study represents an essential step in the development of training methods for the modern emergency medicine trainee.

Informação na judicialização da saúde: o protótipo JUDJe / Information in the judicialization of health: the JUDJe prototype / Información en la judicialización de la salud: el prototipo JUDJe

O fenômeno da judicialização da saúde carece de dados organizados e comparáveis entre estudos sobre o tema. Diversas fontes, recortes prévios e intermediários geram resultados conflitantes e de difícil repro-dução. Esta nota argumenta a necessidade de definir um padrão/elemento comum nos processos judiciais em saúde, propondo o sistema JUDJe, que utiliza o Diário de Justiça Eletrônico para extrair, organizar e classificar esses dados. O JUDJe gerou um banco de dados aberto com 100 mil movimentações processuais sobre casos de câncer. Defende mais qualidade e conexão dos dados, e mais acesso a esses últimos, pro-movendo equidade e visão multidimensional. Propõe a "judicialização 2.0" com dados em rede conectando saúde e direito.

The phenomenon of health judicialisation lacks organised and comparable data between studies on the subject. Different sources, previous and intermediate pieces of information generate conflicting results that are difficult to reproduce. This note argues the need to define a common standard/element in health lawsuits and proposes the JUDJe system, using the online Official Gazette to extract, organize and classify such data. JUDJe generated an open geo-referenced database with 100 thousand legal proceedings on cancer cases. It advocates more quality and connection of data, and more access to them, promoting equity and a multidimensional vision. It proposes a "judicialization 2.0" connecting the health and law domains.

El fenómeno de la judicialización de la salud carece de datos organizables y comparables entre los estudios sobre el tema. Diferentes fuentes, cortes previos y intermedios generan resultados contradictorios y dificiles de reproduzir. Esta nota argumenta la necesidad de definir un elemento común/estándar en los procesos judiciales de salud, proponiendo el sistema JUDJe, que utiliza el Diario Oficial Electrónico de Justicia para extraer, organizar y clasificar esos datos. El JUDJe generó una base de datos abiertos georreferenciada con 100 mil actuaciones judiciales sobre casos de cáncer. Defiende más calidad y conexión de datos, y más acceso a esos últimos, promoviendo la equidad y una visión multidimensional. Propone la "judicialización 2.0" con datos en red que conecten salud y derecho.

With super SDMs (machine learning, open access big data, and the cloud) towards more holistic global squirrel hotspots and coldspots.

Species-habitat associations are correlative, can be quantified, and used for powerful inference. Nowadays, Species Distribution Models (SDMs) play a big role, e.g. using Machine Learning and AI algorithms, but their best-available technical opportunities remain still not used for their potential e.g. in the policy sector. Here we present Super SDMs that invoke ML, OA Big Data, and the Cloud with a workflow for the best-possible inference for the 300 + global squirrel species. Such global Big Data models are especially important for the many marginalized squirrel species and the high number of endangered and data-deficient species in the world, specifically in tropical regions. While our work shows common issues with SDMs and the maxent algorithm ('Shallow Learning'), here we present a multi-species Big Data SDM template for subsequent ensemble models and generic progress to tackle global species hotspot and coldspot assessments for a more inclusive and holistic inference.

Vídeos sobre vacinas: quais fatores influenciam em maior visualização no YouTube? / Videos about vaccines: what factors influence on having higher views on YouTube? / Videos sobre vacunas: ¿qué factores influyen en una mayor visualización en YouTube?

Considerando-se a crescente importância do YouTube como fonte para busca de informações em saúde, o objetivo deste trabalho é analisar os fatores associados a um maior número de visualizações de vídeos sobre vacinas contra a covid-19. Para isso, usaram-se técnicas de Processamento de Linguagem Natural e modelagem estatística com base em 13.619 vídeos, abrangendo três tipos de variáveis: métricas gerais, conteúdo textual dos títulos e informações sobre os participantes dos vídeos. Entre os resultados, destacam-se os vídeos de duração média ou longa, postados durante a madrugada e nos fins de semana, com tags, descrição e títulos curtos, além de elementos controversos e presença de figuras masculinas e brancas em miniaturas. Os achados contribuem para uma melhor compreensão dos possíveis fatores a serem considerados na produção de conteúdo de comunicação em saúde sobre vacinas no YouTube.

Considering the growing importance of YouTube as a source for health information search, the aim of this study was to analyze the factors associated with a higher number of views in videos about covid-19 vaccines. For this purpose, Natural Language Processing techniques and statistical modeling were employed based on 13,619 videos, encompassing three types of variables: general metrics, textual content of titles, and information about the participants in the videos. Among the results, videos of medium or long duration, posted during late hours and on weekends, with tags, descriptions, and short titles, along with controversial elements and the presence of male and white figures in thumbnails stand out. These findings contribute to a better understanding of the potential factors to be considered in the production of health communication content about vaccines on YouTube.

Teniendo en cuenta la creciente importancia de YouTube como fuente de búsqueda de información en salud, el objetivo de este artículo es analizar los factores asociados a un mayor número de visualizaciones en videos sobre vacunas contra el covid-19. Para eso, se emplearon técnicas de Procesamiento del Lenguaje Natural y modelado estadístico basadas en 13,619 videos, que abarcan tres tipos de variables: métricas generales, contenido textual de títulos y información sobre los participantes en los videos. Entre los resultados, destacan los videos de duración media o larga, publicados durante altas horas de la noche y los fines de semana, con tags, descripciones y títulos cortos, junto con elementos controvertidos y la presencia de figuras masculinas y blancas en las miniaturas. Estos hallazgos contribuyen a una mejor comprensión de los posibles factores a tener en cuenta en la producción de contenido de comunicación de salud sobre vacunas en YouTube.

Bibliotecários e os desafios da Ciência Aberta: habilidades, recursos e serviços / Librarians and the challenges of Open Science: skills, resources and services / Bibliotecarios y los desafíos de la Ciencia Abierta: habilidades, recursos y servicios

Este estudo tem como objetivo identificar, na literatura científica, produtos e serviços desenvolvidos por bibliotecários vislumbrando as práticas de Ciência Aberta. A questão principal é identificar: qual o papel dos bibliotecários frente aos desafios da Ciência Aberta? Predominantemente qualitativa, esta pesquisa pode ser caracterizada como bibliográfica, exploratória e descritiva. Para atingir seu objetivo, utilizou-se a técnica de revisão rápida de literatura. Foi realizado um levantamento de publicações indexadas na Brapci, na Scopus e na Web of Science, sendo recuperadas três publicações em cada. Ao excluir um título que se repetiu, o corpus da pesquisa configurou-se com seis artigos e dois resumos apresentados em evento. Conclui-se que debates sobre o novo modus operandi de fazer ciência vêm aumentando e os bibliotecários parecem intimamente relacionados às ações de Ciência Aberta nas diversas etapas da pesquisa científica. Devido às suas habilidades e aos seus serviços, entende-se que exercem um dos papéis centrais na concretização da abertura da ciência.

This study aims to identify, in the scientific literature, products and services developed by librarians with a view to Open Science practices. The main question is to identify: what role is played by librarians facing the challenges of Open Science? Predominantly qualitative, this research can be characterized as bibliographic, exploratory, and descriptive. To achieve its objective, a rapid literature review technique was used. A survey of publications indexed in Brapci, Scopus and Web of Science was carried out, and three publications from each were retrieved. After excluding one title that was repeated, the research corpus consisted of six articles and two abstracts presented at an event. We conclude that debates about the new modus operandi of doing science have been increasing and librarians seem closely related to Open Science actions in the various stages of scientific research. Because of their skills and services, they play one of the central roles to achieve the opening of science.

Este studio tiene como objetivo identificaren la literature científica los productos y servicios desarrollados por los bibliotecarios com vistas a las prácticas de la Ciencia Abierta. La cuestión principal es identificar: ¿ cuál es el papel de los bibliotecarios ante los desafíos de la Ciencia Abierta? Predominantemente cualita-tiva, esta investigación puede caracterizar se como bibliográfica, exploratoria y descriptiva. Para lograr su objetivo, se utilizó la técnica de revision rápida de la literatura. Se realizó un estudio de las publicaciones indexadas en Brapci, Scopus y Web of Science, recuperándo se tres publicaciones en cada una de ellas. Al excluir un título repetido, el corpus de la investigación quedó configurado con seis artículos y dos resúmenes presentados en un evento. Concluimos que los debates sobre el nuevo modus operandi de hacer ciencia han aumentado y los bibliotecarios parecen estar estrechamente relacionados con las acciones de la Ciencia Abierta en las distintas etapas de la investigación científica. Por sus habilidades y servicios, se entiende que ejercen uno de los papeles centrales en la realización de la Ciencia Abierta.

Publishing in the Open Access and Open Science era.

Our research activities would be better served if they were communicated in a manner that is openly accessible to the public and all researchers. The research we share is often limited to representative data included in research papers-science would be much more efficient if all reproducible research data were shared alongside detailed methods and protocols, in the paradigm called Open Science. On the other hand, one primary function of research journals is to select manuscripts of good quality, verify the authenticity of the data and its impact, and deliver to the appropriate audience for critical evaluation and verification. In the current paradigm, where publication in a subset of journals is intimately linked to research evaluation, a hypercompetitive "market" has emerged where authors compete to access a limited number of top-tier journals, leading to high rejection rates. Competition among publishers and scientific journals for market dominance resulted in an increase in both the number of journals and the cost of publishing and accessing scientific papers. Here we summarize the current problems and potential solutions from the development of AI technology discussed in the seminar at the 46th Annual Meeting of the Molecular Biology Society of Japan.