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.

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.

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.

DS-PACK: Tool assembly for the end-to-end support of controlled access human data sharing.

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.

Proposed CMS Data Access Changes May Hamper Health Services Research.

This Viewpoint discusses how proposed Centers for Medicare & Medicaid Services data access changes may impede health services research.

Preserving Access to CMS Data for Early-Career Researchers.

This Viewpoint describes the potential consequences of the Centers for Medicare & Medicaid Services' (CMS') proposed data access policy change for graduate students and early-career researchers.

Plan to alter access to health data draws ire.

Universities could no longer store Medicare and Medicaid data, and costs would rise.

Conectividade universal

Um dos oito princípios orientadores da transformação digital no setor da saúde promovidos pela Organização Pan-Americana da Saúde (OPAS) é a conectividade. Esta sinopse de políticas apresenta conceitos-chave, linhas de ação recomendadas e indicadores para monitoramento, com o objetivo de avançar na conectividade universal.

Inteligência artificial

Um dos oito princípios orientadores para a transformação digital no setor de saúde promovidos pela Organização Pan-Americana da Saúde (OPAS) é a inteligência artificial (IA). Esta sinopse de políticas apresenta conceitos-chave, linhas de ação recomendadas e indicadores para monitoramento, com o objetivo de avançar na IA.

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.

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.

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.

Impact of Open Access status on journal metrics in infectious diseases and clinical microbiology - A cross-sectional study.

INTRODUCTION: While Open Access (OA) journals provide free access to articles, they entail high article processing charges (APC), limiting opportunities for young researchers and those from low-middle income countries to publish OA. METHODS: Cross-sectional study, evaluating APC and academic impact of full OA (FOA) journals in infectious diseases (ID) and clinical microbiology (CM) compared to hybrid journals. Data were collected from Journal Citation Reports and journals' websites. RESULTS: Among 255 journals, median APC was 2850 (interquartile range [IQR] 1325-3654$). Median APC for 120 FOA journals was significantly lower than for 119 hybrid journals (2000, IQR 648-2767$ versus 3550, IQR 2948-4120$, p < 0.001). FOA journals had lower citation numbers and impact metrics compared to hybrid journals. CONCLUSION: While FOA ID/CM journals have lower APCs, they also lower academic impact compared to hybrid journals. These findings highlight the need for reforms in the publication process in view of achieving equitable data dissemination.

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.

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.

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.