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.

Use of a dedicated open transcarotid access system for neurovascular disease.

BACKGROUND: Transcarotid artery revascularization (TCAR) is an increasingly popular technique for the management of extracranial carotid stenosis. Its off-label use in the treatment of intracranial neurovascular disease is poorly described. Our objective is to describe the use of a dedicated open transcarotid access system for the treatment of neurovascular pathologies other than extracranial carotid stenosis. METHODS: We conducted a retrospective review of a prospectively maintained database of consecutive patients who underwent treatment of neurovascular disease at a single academic center using the ENROUTE Transcarotid Arterial Sheath. Demographics, procedural characteristics, and patient outcomes were reported. RESULTS: Twenty patients were included in the study between September 2017 and March 2023. The following pathologies were treated: intracranial atherosclerotic disease (ICAD, nine patients), complex cervico-petrous carotid disease (five patients), intracranial aneurysms (three patients), and large vessel occlusion-acute ischemic stroke (three patients). Eighteen of the 20 cases were performed with active carotid flow reversal. All cases were successfully completed. There were no access-related complications. One periprocedural complication was incurred: a microguidewire perforation during an exchange maneuver for the treatment of ICAD. CONCLUSION: An open transcarotid approach using a dedicated transcarotid system may offer a safe alternative access strategy for the endovascular treatment of complex neurovascular pathologies when a traditional transfemoral or transradial approach is contraindicated or failed.

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.

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.

Open Access Publication in Total Ankle Arthroplasty Literature Is Associated With Increased Social Media Attention, but Not Increased Citations.

Background: Open access (OA) publications are increasingly common in orthopaedic literature. However, whether OA publications are associated with increased readership or citations among total ankle arthroplasty (TAA) literature is unclear. We hypothesize that compared with non-OA status, OA status is associated with increased social media dissemination, and readership, but not with citation count. This study aimed to analyze social media attention, citations, readership, and cost of TAA OA and non-OA publications. Methods: Using a PubMed query search, there were 368 publications from 81 journals, with 25% (91/368) being OA articles and 75% (277/368) non-OA articles from 2016 to 2023. We analyzed the Altmetric Attention Score (AAS), Mendeley readership score, and citations between OA vs non-OA articles. Citations and cost of OA articles were determined using an altered timeline and publisher's website, respectively. Subgroup analysis was performed among articles published in the top 5 TAA journals (Tables 2 and 3). Negative binomial regression was used while adjusting for days since publication. Significance was considered at P <.05. Results: OA publication was associated with a larger mean AAS score (8.7 ± 37.0 vs 4.8 ± 26.3), Mendeley readership (42.4 ± 41.6 vs 34.9 ± 25.7), and Twitter mentions (4.6 ± 7.4 vs 3.3 ± 8.1), but not citations (19.7 ± 24.8 vs 20.3 ± 23.5) (Table 1). Conclusion: TAA OA publications and top 5 journals were associated with significantly increased social media attention but not Mendeley readership or citation counts.

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.

Plan to alter access to health data draws ire.

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

A simplified digital workflow for the rapid design and fabrication of interim fixed prostheses using an open-access software program.

A digital workflow for the rapid design and fabrication of interim fixed prostheses using an open-access software program and 3-dimensional printing technology is described. After obtaining intraoral scanning data, the prostheses are designed by offset, margin sculpting, and a Boolean operation. Then, the prostheses are finalized and manufactured additively. The use of the open-access software program and simplified design steps enhances the manufacturing efficiency and accessibility of computer-aided design and computer-aided manufacturing of interim restorations.

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.

Inspiration4 data access through the NASA Open Science Data Repository.

The increasing accessibility of commercial and private space travel necessitates a profound understanding of its impact on human health. The NASA Open Science Data Repository (OSDR) provides transparent and FAIR access to biological studies, notably the SpaceX Inspiration4 (I4) mission, which amassed extensive data from civilian astronauts. This dataset encompasses omics and clinical assays, facilitating comprehensive research on space-induced biological responses. These data allow for multi-modal, longitudinal assessments, bridging the gap between human and model organism studies. Crucially, community-driven data standards established by NASA's OSDR Analysis Working Groups empower artificial intelligence and machine learning to glean invaluable insights, guiding future mission planning and health risk mitigation. This article presents a concise guide to access and analyze I4 data in OSDR, including programmatic access through GLOpenAPI. This pioneering effort establishes a precedent for post-mission health monitoring programs within space agencies, propelling research in the burgeoning field of commercial space travel's impact on human physiology.

Development and initial validation of an open-access online Behavioral Avoidance Test (BAT) for spider fear.

The behavioral avoidance test (BAT) is a well-known diagnostic tool assessing fear by directly measuring avoidance behavior. For instance, in spider phobia, participants or patients gradually approach a live spider until they feel too uncomfortable to continue. However, the use of different BAT protocols in various studies hampers the comparability of results. Moreover, conducting the test requires considerable preparation by researchers and clinicians. Thus, we have developed an open-access online BAT (vBATon). We validated its efficacy in measuring avoidance behavior and eliciting feelings of anxiety and disgust by comparing it to a real-life BAT (rl-BAT). Spider-fearful (N = 31) and nonfearful (N = 31) individuals completed a rl-BAT and vBATon on two separate dates within a 1-week interval. As expected, both tests successfully distinguished between spider-fearful and nonfearful individuals. Crucially, equivalence tests confirmed that vBATon captures avoidance behavior, anxiety, and disgust equal to the rl-BAT. Assessing validity, we found moderate to high correlations between vBATon and (a) the rl-BAT and (b) self-report measurements of spider fear (Spider Phobia Questionnaire, Fear of Spiders Questionnaire). Overall, our study displayed initial evidence of validity of vBATon and suggests that it is a standardized, efficient, and user-friendly alternative to rl-BATs for measuring spider fear. It can be utilized in both research and clinical practice. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Dissemination of scientific information through open access by research scientists in a developing country.

This study investigated the perceptions and factors that researchers had about Open Access (OA) publishing, specifically how it affected their decision to publish or not. The Diffusion of Innovation Theory by Rogers served as the study's main guide, and 15 research scientists from Ghana's Council of Scientific and Industrial Research's Crop Research Institute provided qualitative data for the study through semi-structured interviews and the interpretivist research paradigm. Convenience sampling was used to choose the participants, and thematic analysis was used to analyse and present the research results in themes. The study's conclusions showed that all of the participants benefited from OA and that they were all aware of its application for disseminating scientific information. High Article Processing Charges (APC) and credibility issues were also mentioned in the study as significant obstacles to using OA for the dissemination of scientific information. The study suggests that in order for scientists to use Open Access (OA) for the sharing of scientific information, they must be given the means to distinguish trustworthy journals from predatory ones.

Outcomes of minimal access cytoreductive surgery (M-CRS) and HIPEC/EPIC vs. open cytoreductive surgery (O-CRS) and HIPEC/EPIC in patients with peritoneal surface malignancies: a meta-analysis.

Introduction: Minimal Access Surgery (MAS) has shown better peri-operative outcomes with equivalent oncological outcomes in gastrointestinal and thoracic oncology. Open CRS (O-CRS) procedure accompanies inevitable and significant surgical morbidity in patients. The aim of the review article is to compare outcomes of M-CRS and HIPEC/EPIC with open procedure in peritoneal surface malignancies. Content: Comprehensive search of databases was done and total 2,807 articles were found (2793-PubMed and 14-Cochrane review). PRISMA flow chart was prepared and 14 articles were selected. Meta-analysis was performed according to PRISMA guidelines using random-effects model (DerSimonian Laird) and fixed effect model. Publication bias was tested with Funnel plot and Egger's regression test. Quality of studies was assessed by Newcastle-Ottawa scale. Summary and Outlook: Patients in both groups [total (732), M-CRS(319), O-CRS(413)] were similar in demographic characteristics. Peri-operative outcomes were significantly better in M-CRS group in terms of blood loss SMD=-2.379, p<0.001 (95 % CI -2.952 to -1.805), blood transfusion RR=0.598, p=0.011 (95 % CI 0.402 to 0.889), bowel recovery SMD=-0.843, p=0.01 (95 % CI -1.487 to -0.2), hospital stay SMD=-2.348, p<0.001 (95 % CI -3.178 to -1.519) and total morbidity RR=0.538, p<0.001 (95 % CI 0.395 to 0.731). Duration of surgery SMD=-0.0643 (95 % CI -0.993 to 0.865, p=0.892) and CC0 score RR=1.064 (95 % CI 0.992 to 1.140, p=0.083) had no significant difference. Limited studies which evaluated survival showed similar outcomes. This meta-analysis shows that M-CRS and HIPEC/EPIC is feasible and has better peri-operative outcomes compared to open procedure in patients with limited peritoneal carcinoma index (PCI) peritoneal surface malignancies. Survival outcomes were not calculated. Further studies are warranted in this regard.