RESUMO
Single-base substitution (SBS) mutational signatures have become standard practice in cancer genomics. In lieu of de novo signature extraction, reference signature assignment allows users to estimate the activities of pre-established SBS signatures within individual malignancies. Several tools have been developed for this purpose, each with differing methodologies. However, due to a lack of standardization, there may be inter-tool variability in signature assignment. We deeply characterized three assignment strategies and five SBS signature assignment tools. We observed that assignment strategy choice can significantly influence results and interpretations. Despite varying recommendations by tools, Refit performed best by reducing overfitting and maximizing reconstruction of the original mutational spectra. Even after uniform application of Refit, tools varied remarkably in signature assignments both qualitatively (Jaccard index = 0.38-0.83) and quantitatively (Kendall tau-b = 0.18-0.76). This phenomenon was exacerbated for 'flat' signatures such as the homologous recombination deficiency signature SBS3. An ensemble approach (EnsembleFit), which leverages output from all five tools, increased SBS3 assignment accuracy in BRCA1/2-deficient breast carcinomas. After generating synthetic mutational profiles for thousands of pan-cancer tumors, EnsembleFit reduced signature activity assignment error 15.9-24.7% on average using Catalogue of Somatic Mutations In Cancer and non-standard reference signature sets. We have also released the EnsembleFit web portal (https://www.ensemblefit.pittlabgenomics.com) for users to generate or download ensemble-based SBS signature assignments using any strategy and combination of tools. Overall, we show that signature assignment heterogeneity across tools and strategies is non-negligible and propose a viable, ensemble solution.
Assuntos
Proteína BRCA1 , Proteína BRCA2 , Proteína BRCA1/genética , Proteína BRCA2/genética , MutaçãoRESUMO
Adequate reporting is essential for evaluating the performance and clinical utility of a prognostic prediction model. Previous studies indicated a prevalence of incomplete or suboptimal reporting in translational and clinical studies involving development of multivariable prediction models for prognosis, which limited the potential applications of these models. While reporting templates introduced by the established guidelines provide an invaluable framework for reporting prognostic studies uniformly, there is a widespread lack of qualified adherence, which may be due to miscellaneous challenges in manual reporting of extensive model details, especially in the era of precision medicine. Here, we present ReProMSig (Reproducible Prognosis Molecular Signature), a web-based integrative platform providing the analysis framework for development, validation and application of a multivariable prediction model for cancer prognosis, using clinicopathological features and/or molecular profiles. ReProMSig platform supports transparent reporting by presenting both methodology details and analysis results in a strictly structured reporting file, following the guideline checklist with minimal manual input needed. The generated reporting file can be published together with a developed prediction model, to allow thorough interrogation and external validation, as well as online application for prospective cases. We demonstrated the utilities of ReProMSig by development of prognostic molecular signatures for stage II and III colorectal cancer respectively, in comparison with a published signature reproduced by ReProMSig. Together, ReProMSig provides an integrated framework for development, evaluation and application of prognostic/predictive biomarkers for cancer in a more transparent and reproducible way, which would be a useful resource for health care professionals and biomedical researchers.
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Lista de Checagem , Neoplasias , Humanos , Medicina de Precisão , Neoplasias/diagnóstico , Neoplasias/genética , Neoplasias/terapiaRESUMO
BACKGROUND: Tremendous research efforts have been made in the Alzheimer's disease (AD) field to understand the disease etiology, progression and discover treatments for AD. Many mechanistic hypotheses, therapeutic targets and treatment strategies have been proposed in the last few decades. Reviewing previous work and staying current on this ever-growing body of AD publications is an essential yet difficult task for AD researchers. METHODS: In this study, we designed and implemented a natural language processing (NLP) pipeline to extract gene-specific neurodegenerative disease (ND) -focused information from the PubMed database. The collected publication information was filtered and cleaned to construct AD-related gene-specific publication profiles. Six categories of AD-related information are extracted from the processed publication data: publication trend by year, dementia type occurrence, brain region occurrence, mouse model information, keywords occurrence, and co-occurring genes. A user-friendly web portal is then developed using Django framework to provide gene query functions and data visualizations for the generalized and summarized publication information. RESULTS: By implementing the NLP pipeline, we extracted gene-specific ND-related publication information from the abstracts of the publications in the PubMed database. The results are summarized and visualized through an interactive web query portal. Multiple visualization windows display the ND publication trends, mouse models used, dementia types, involved brain regions, keywords to major AD-related biological processes, and co-occurring genes. Direct links to PubMed sites are provided for all recorded publications on the query result page of the web portal. CONCLUSION: The resulting portal is a valuable tool and data source for quick querying and displaying AD publications tailored to users' interested research areas and gene targets, which is especially convenient for users without informatic mining skills. Our study will not only keep AD field researchers updated with the progress of AD research, assist them in conducting preliminary examinations efficiently, but also offers additional support for hypothesis generation and validation which will contribute significantly to the communication, dissemination, and progress of AD research.
Assuntos
Doença de Alzheimer , Doenças Neurodegenerativas , Animais , Camundongos , Mineração de Dados/métodos , PubMed , Bases de Dados FactuaisRESUMO
The GlyCosmos Glycoscience Portal (https://glycosmos.org) and PubChem (https://pubchem.ncbi.nlm.nih.gov/) are major portals for glycoscience and chemistry, respectively. GlyCosmos is a portal for glycan-related repositories, including GlyTouCan, GlycoPOST, and UniCarb-DR, as well as for glycan-related data resources that have been integrated from a variety of 'omics databases. Glycogenes, glycoproteins, lectins, pathways, and disease information related to glycans are accessible from GlyCosmos. PubChem, on the other hand, is a chemistry-based portal at the National Center for Biotechnology Information. PubChem provides information not only on chemicals, but also genes, proteins, pathways, as well as patents, bioassays, and more, from hundreds of data resources from around the world. In this work, these 2 portals have made substantial efforts to integrate their complementary data to allow users to cross between these 2 domains. In addition to glycan structures, key information, such as glycan-related genes, relevant diseases, glycoproteins, and pathways, was integrated and cross-linked with one another. The interfaces were designed to enable users to easily find, access, download, and reuse data of interest across these resources. Use cases are described illustrating and highlighting the type of content that can be investigated. In total, these integrations provide life science researchers improved awareness and enhanced access to glycan-related information.
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Bases de Dados de Compostos Químicos , Polissacarídeos , Glicosilação , Fluxo de Trabalho , Informática , Polissacarídeos/química , Glicoconjugados/químicaRESUMO
BACKGROUND: A frequently used feature of electronic patient portals is the viewing of test results. Research on patient portals is abundant and offers evidence to help portal implementers make policy and practice decisions. In contrast, no comparable comprehensive summary of research addresses the direct release of and patient access to test results. OBJECTIVE: This scoping review aims to analyze and synthesize published research focused on patient and health care provider perspectives on the direct release of laboratory, imaging, and radiology results to patients via web portals. METHODS: PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were followed. Searches were conducted in CINAHL, MEDLINE, and other databases. Citations were screened in Covidence using the inclusion and exclusion criteria. Primary studies that focused on patient and health care provider perspectives on patient access to laboratory and imaging results via web portals were included. An updated search was conducted up to August 2023. Our review included 27 articles-20 examining patient views, 3 examining provider views, and 4 examining both patient and provider views. Data extraction and inductive data analysis were informed by sensitizing concepts from sociomaterial perspectives, and 15 themes were generated. RESULTS: Patient perspectives (24 papers) were synthesized using nine themes: (1) patterns of use and patient characteristics; (2) emotional response when viewing the results and uncertainty about their implications; (3) understanding test results; (4) preferences for mode and timing of result release; (5). information seeking and patients' actions motivated by viewing results via a portal; (6) contemplating changes in behavior and managing own health; (7) benefits of accessing test results via a portal; (8) limitations of accessing test results via a portal; and (9) suggestions for portal improvement. Health care provider perspectives (7 papers) were synthetized into six themes: (1) providers' view of benefits of patient access to results via the portal; (2) effects on health care provider workload; (3) concerns about patient anxiety; (4) timing of result release into the patient portal; (5) the method of result release into the patient portal: manual versus automatic release; and (6) the effects of hospital health information technology system on patient quality outcomes. CONCLUSIONS: The timing of the release of test results emerged as a particularly important topic. In some countries, the policy context may motivate immediate release of most tests directly into patient portals. However, our findings aim to make policy makers, health administrators, and other stakeholders aware of factors to consider when making decisions about the timing of result release. This review is sensitive to the characteristics of patient populations and portal technology and can inform result release framework policies. The findings are timely, as patient portals have become more common internationally.
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Registros Eletrônicos de Saúde , Portais do Paciente , Humanos , Pessoal de Saúde , Atitude do Pessoal de Saúde , PacientesRESUMO
BACKGROUND: The COVID-19 pandemic has required an increased need for rehabilitation activities applicable to patients with chronic diseases. Telerehabilitation has several advantages, including reducing clinic visits by patients vulnerable to infectious diseases. Digital platforms are often used to assist rehabilitation services for patients in remote settings. Although web portals for medical use have existed for years, the technology in telerehabilitation remains a novel method. OBJECTIVE: This scoping review investigated the functional features and theoretical approaches of web portals developed for telerehabilitation in patients with chronic diseases. METHODS: PubMed and Web of Science were reviewed to identify articles associated with telerehabilitation. Of the 477 nonduplicate articles reviewed, 35 involving 14 portals were retrieved for the scoping review. The functional features, targeted diseases, and theoretical approaches of these portals were studied. RESULTS: The 14 portals targeted patients with chronic obstructive pulmonary disease, cardiovascular, osteoarthritis, multiple sclerosis, cystic fibrosis diseases, and stroke and breast cancer survivors. Monitoring/data tracking and communication functions were the most common, followed by exercise instructions and diary/self-report features. Several theoretical approaches, behavior change techniques, and motivational techniques were found to be utilized. CONCLUSIONS: The web portals could unify and display multiple types of data and effectively provide various types of information. Asynchronous correspondence was more favorable than synchronous, real-time interactions. Data acquisition often required assistance from other digital tools. Various functions with patient-centered principles, behavior change strategies, and motivational techniques were observed for better support shifting to a healthier lifestyle. These findings suggested that web portals for telerehabilitation not only provided entrance into rehabilitation programs but also reinforced participant-centered treatment, adherence to rehabilitation, and lifestyle changes over time.
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COVID-19 , Telerreabilitação , Doença Crônica , Humanos , Pandemias , SARS-CoV-2RESUMO
BACKGROUND: In the current phase of the COVID-19 pandemic, we are witnessing the most massive vaccine rollout in human history. Like any other drug, vaccines may cause unexpected side effects, which need to be investigated in a timely manner to minimize harm in the population. If not properly dealt with, side effects may also impact public trust in the vaccination campaigns carried out by national governments. OBJECTIVE: Monitoring social media for the early identification of side effects, and understanding the public opinion on the vaccines are of paramount importance to ensure a successful and harmless rollout. The objective of this study was to create a web portal to monitor the opinion of social media users on COVID-19 vaccines, which can offer a tool for journalists, scientists, and users alike to visualize how the general public is reacting to the vaccination campaign. METHODS: We developed a tool to analyze the public opinion on COVID-19 vaccines from Twitter, exploiting, among other techniques, a state-of-the-art system for the identification of adverse drug events on social media; natural language processing models for sentiment analysis; statistical tools; and open-source databases to visualize the trending hashtags, news articles, and their factuality. All modules of the system are displayed through an open web portal. RESULTS: A set of 650,000 tweets was collected and analyzed in an ongoing process that was initiated in December 2020. The results of the analysis are made public on a web portal (updated daily), together with the processing tools and data. The data provide insights on public opinion about the vaccines and its change over time. For example, users show a high tendency to only share news from reliable sources when discussing COVID-19 vaccines (98% of the shared URLs). The general sentiment of Twitter users toward the vaccines is negative/neutral; however, the system is able to record fluctuations in the attitude toward specific vaccines in correspondence with specific events (eg, news about new outbreaks). The data also show how news coverage had a high impact on the set of discussed topics. To further investigate this point, we performed a more in-depth analysis of the data regarding the AstraZeneca vaccine. We observed how media coverage of blood clot-related side effects suddenly shifted the topic of public discussions regarding both the AstraZeneca and other vaccines. This became particularly evident when visualizing the most frequently discussed symptoms for the vaccines and comparing them month by month. CONCLUSIONS: We present a tool connected with a web portal to monitor and display some key aspects of the public's reaction to COVID-19 vaccines. The system also provides an overview of the opinions of the Twittersphere through graphic representations, offering a tool for the extraction of suspected adverse events from tweets with a deep learning model.
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COVID-19 , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Mídias Sociais , Atitude , COVID-19/epidemiologia , COVID-19/prevenção & controle , Vacinas contra COVID-19/efeitos adversos , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/epidemiologia , Humanos , Infodemiologia , Pandemias , SARS-CoV-2RESUMO
Proteins are critical in catalyzing chemical reactions, forming key cellular structures, and in regulating cellular processes. Investigation of marine microbial proteins by metaproteomics methods enables the discovery of numerous aspects of microbial biogeochemical processes. However, these datasets present big data challenges as they often involve many samples collected across broad geospatial and temporal scales, resulting in thousands of protein identifications, abundances, and corresponding annotation information. The Ocean Protein Portal (OPP) was created to enable data sharing and discovery among multiple scientific domains and serve both research and education functions. The portal focuses on three use case questions: "Where is my protein of interest?", "Who makes it?", and "How much is there?" and provides profile and section visualizations, real-time taxonomic analysis, and links to metadata, sequence analysis, and other external resources to enable connections to be made between biogeochemical and proteomics datasets.
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Disseminação de Informação , Proteômica , Oceanos e MaresRESUMO
BACKGROUND: This study aims to identify a novel potential use for web portals in health care and health research: their adoption for the purposes of rapidly sharing health research findings with clinicians, scientists, and patients. In the era of precision medicine and learning health systems, the translation of research findings into targeted therapies depends on the availability of big data and emerging research results. Web portals may work to promote the availability of novel research, working in tandem with traditional scientific publications and conference proceedings. OBJECTIVE: This study aims to assess the potential use of web portals, which facilitate the sharing of health research findings among researchers, clinicians, patients, and the public. It also summarizes the potential legal, ethical, and policy implications associated with such tools for public use and in the management of patient care for complex diseases. METHODS: This study broadly adopts the methods for scoping literature reviews outlined by Arskey and O'Malley in 2005. Raised by the integration of web portals into patient care for complex diseases, we systematically searched 3 databases, PubMed, Scopus, and WestLaw Next, for sources describing web portals for sharing health research findings among clinicians, researchers, and patients and their associated legal, ethical, and policy challenges. Of the 719 candidate source citations, 22 were retained for the review. RESULTS: We found varied and inconsistent treatment of web portals for sharing health research findings among clinicians, researchers, and patients. Although the literature supports the view that portals of this kind are potentially highly promising, they remain novel and are not yet widely adopted. We also found a wide range of discussions on the legal, ethical, and policy issues related to the use of web portals to share research data. CONCLUSIONS: We identified 5 important legal and ethical challenges: privacy and confidentiality, patient health literacy, equity, training, and decision-making. We contend that each of these has meaningful implications for the increased integration of web portals into clinical care.
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Letramento em Saúde , Portais do Paciente , Bibliometria , Big Data , HumanosRESUMO
BACKGROUND: Despite the scientific consensus about vaccines safety and effectiveness, there is still a discrepancy between scientific evidence and perception by the general population. The "VaccinarSì" portal was created in 2013 by Italian specialists in Public Health to provide evidence-based information regarding vaccination. STUDY DESIGN: The purpose of this study was to analyse the web traffic on "VaccinarSì" platform during a six-year period (May 8, 2013-May 8, 2019). Moreover, we compared the first six-month with the last six-month period of the website activity, to identify potential areas of improvements. METHODS: This is a descriptive study using Google Analytics data. We collected data regarding the following: total number of sessions to the portal, total number of pages viewed, total number of users and the number of new visitors, geographical locations and demography of users as well as user access mode (type of device used and way of access). We also collected some data that were informative about the possibility to infer the level of visitors' engagement with the portal, such as thee number of returning users, bounce rate, number of pages visited per session and mean session duration. RESULTS: Throughout the relevant period, the portal has consistently increased its popularity, with a remarkable increment of monthly connections (ending up to more than 80,000/month) from all over Italy. Visitors were mainly female (71.1%), aged between 25 and 44 years (64.7%). Healthcare professionals were responsible for a considerable proportion of accesses (50.6%). The mobile has become the dominant device used to access the portal, accounting for 77.8% of total connection in the last six months. Similarly, in the last period, organic search accounted for 92% of all connections. Measles and MPR vaccine, as well as chickenpox and hexavalent vaccine, have remained the most appealing topics of interest among visitors over the years. The page that attracted more visitors over the six years was "real risks and benefits of vaccination", accounting for 5.67% of total sessions with a high mean duration spent of 05:08 minutes. CONCLUSION: During the six years of activity, overall, the level of users' engagement with the portal has dropped with an increased bounce rate and a lower average number of pages visited per session and a lower mean duration of each connection. The lowest engagement involved connections accessed through mobile devices. Results helped "Vaccinarsi" developers to speculate about future strategies to further increase the platform popularity and optimize visitors' engagement.
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Ferramenta de Busca , Vacinas , Adulto , Feminino , Humanos , Internet , Itália , Saúde Pública , VacinaçãoRESUMO
BACKGROUND: The internet-based stepped-care intervention iCAN-DO, used in the multicenter randomized controlled trial AdultCan, was developed for adult patients undergoing treatment for cancer and concurrently experiencing anxiety or depressive symptoms. iCAN-DO aimed to decrease symptoms of anxiety or depression. Step 1 comprises access to a library with psychoeducational material and a peer-support section, as well as the possibility to pose questions to a nurse. Step 2 of the intervention offers treatment consisting of internet-based cognitive behavioral therapy (iCBT) to participants still experiencing anxiety or depression at 1, 4, or 7 months after inclusion. OBJECTIVE: The study aimed to explore user experiences of delivery, design, and structure of iCAN-DO from the perspective of people with cancer. METHODS: We studied user experiences by interviewing 15 informants individually: 10 women with breast cancer (67%), 4 men with prostate cancer (27%), and 1 man with colorectal cancer (7%) with a mean age 58.9 years (SD 8.9). The interviews focused on informants' perceptions of ease of use and of system design and structure. Informants had been included in iCAN-DO for at least 7 months. They were purposefully selected based on activity in Step 1, participation in iCBT (ie, Step 2), gender, and diagnosis. RESULTS: Of the 15 informants, 6 had been offered iCBT (40%). All informants used the internet on a daily basis, but 2 (13%) described themselves as very inexperienced computer users. The analysis revealed three subthemes, concerning how user experiences were affected by disease-specific factors and side effects (User experience in the context of cancer), technical problems (Technical struggles require patience and troubleshooting), and the structure and design of iCAN-DO (Appealing and usable, but rather simple). CONCLUSIONS: The results indicate that user experiences were affected by informants' life situations, the technical aspects and the design of iCAN-DO, and informants' preferences. The results have generated some developments feasible to launch during the ongoing study, but if iCAN-DO is to be used beyond research interest, a greater level of tailoring of information, features, and design may be needed to improve user experiences. The use of recurrent questionnaires during the treatment period may highlight an individual's health, but also function as a motivator showing improvements over time.
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Ansiedade/terapia , Depressão/terapia , Intervenção Baseada em Internet/tendências , Neoplasias/terapia , Adulto , Idoso , Feminino , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
Mobile and wearable technologies offer patients with diabetes mellitus new possibilities for data collection and their more effective analysis. The Diabesdagboga smartphone application and the Diani web portal enable to collect and analyze glycaemia values, carbohydrates intake, insulin doses and the level of physical activity. The data are not only accessible in the corresponding smartphone but also automatically transferred to an Internet portal, where they may be completed by the records from an electronic pedometer and continuous glucose monitor. All these data may then be displayed in various types of graphical outputs and are available to both the patient and the physician. The case report of a patient who has used the system for almost two years shows a significant improvement in metabolic compensation (a decrease in the mean HbA1c value by 18.6 mmol/mol as compared with the previous period).
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Diabetes Mellitus Tipo 1 , Glicemia , Diabetes Mellitus Tipo 1/tratamento farmacológico , Hemoglobinas Glicadas/análise , Humanos , InsulinaRESUMO
tRNA-derived fragments (tRFs) constitute a new class of short regulatory RNAs that are a product of nascent or mature tRNA processing. tRF sequences have been identified in all domains of life; however, most published research pertains to human, yeast and some bacterial organisms. Despite growing interest in plant tRFs and accumulating evidence of their function in plant development and stress responses, no public, web-based repository dedicated to these molecules is currently available. Here, we introduce tRex (http://combio.pl/trex)-the first comprehensive data-driven online resource specifically dedicated to tRFs in the model plant Arabidopsis thaliana. The portal is based on verified Arabidopsis tRNA annotation and includes in-house-generated and publicly available small RNA sequencing experiments from various tissues, ecotypes, genotypes and stress conditions. The provided web-based tools are designed in a user-friendly manner and allow for seamless exploration of the data that are presented in the form of dynamic tables and cumulative coverage profiles. The tRex database is connected to external genomic and citation resources, which makes it a one-stop solution for Arabidopsis tRF-related research.
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Arabidopsis/genética , Biologia Computacional/métodos , Bases de Dados Genéticas , RNA de Plantas/genética , RNA de Transferência/genética , Sequência de Bases , Internet , Conformação de Ácido Nucleico , RNA de Plantas/química , RNA de Transferência/química , Análise de Sequência de RNA/métodos , Homologia de Sequência do Ácido NucleicoRESUMO
PURPOSE OF REVIEW: The international mouse phenotyping consortium (IMPC) is producing defined gene knockout mouse lines. Here, a phenotyping program is presented that is based on micro-computed tomography (µCT) assessment of distal femur and vertebra. Lines with significant variation undergo a computer-based bone histomorphometric analysis. RECENT FINDINGS: Of the 220 lines examined to date, approximately 15% have a significant variation (high or low) by µCT, most of which are not identified by the IMPC screen. Significant dimorphism between the sexes and bone compartments adds to the complexity of the skeletal findings. The µCT information that is posted at www.bonebase.org can group KOMP lines with similar morphological features. The histological data is presented in a graphic form that associates the cellular features with a specific anatomic group. The web portal presents a bone-centric view appropriate for the skeletal biologist/clinician to organize and understand the large number of genes that can influence skeletal health. Cataloging the relative severity of each variant is the first step towards compiling the dataset necessary to appreciate the full polygenic basis of degenerative bone disease.
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Osso e Ossos/diagnóstico por imagem , Fêmur/diagnóstico por imagem , Coluna Vertebral/diagnóstico por imagem , Animais , Osso e Ossos/patologia , Bases de Dados Factuais , Fêmur/patologia , Genótipo , Gestão da Informação , Camundongos , Camundongos Knockout , Fenótipo , Desenvolvimento de Programas , Índice de Gravidade de Doença , Caracteres Sexuais , Coluna Vertebral/patologia , Microtomografia por Raio-XRESUMO
BACKGROUND: To gain insight into the opinions and working methods of diabetes care providers after using a diabetes web portal for 4 years in order to understand the role of the provider in patients' web portal use. METHODS: Survey among physicians and nurses from general practices and an outpatient clinic, correlated with data from the common web portal. RESULTS: One hundred twenty-eight questionnaires were analysed (response rate 56.6%). Responders' mean age was 46.2 ± 9.8 years and 43.8% were physicians. The majority was of opinion that the portal improves patients' diabetes knowledge (90.6%) and quality of care (72.7%). Although uploading glucose diary (93.6%) and patient access to laboratory and clinical notes (91.2 and 71.0%) were considered important, these features were recommended to patients in only 71.8 and 19.5% respectively. 64.8% declared they informed their patients about the portal and 45.3% handed-out the information leaflet and website address. The portal was especially recommended to type 1 diabetes patients (78.3%); those on insulin (84.3%) and patients aged< 65 years (72.4%). Few found it timesaving (21.9%). Diabetes care providers' opinions were not associated with patients' portal use. CONCLUSIONS: Providers are positive about patients web portals but still not recommend or encourage the use to all patients. There seems room for improvement in their working methods.
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Instituições de Assistência Ambulatorial , Atitude do Pessoal de Saúde , Diabetes Mellitus , Medicina Geral , Pessoal de Saúde/estatística & dados numéricos , Portais do Paciente , Preferência do Paciente/estatística & dados numéricos , Autogestão , Adulto , Diabetes Mellitus/psicologia , Diabetes Mellitus/terapia , Feminino , Educação em Saúde/métodos , Humanos , Disseminação de Informação/métodos , Masculino , Pessoa de Meia-Idade , Opinião Pública , Autogestão/educação , Autogestão/métodos , Autogestão/psicologia , Telemedicina/métodosRESUMO
The use of Web portals has several benefits. They have been proven to enhance communication between patients and health care professionals, allow patients to play a more active role in their own treatment and self-management, increase self-efficiency. Doctors can access patients' medical data and give recommendations to the patients. Some evidence of positive outcomes has been reported including improved clinical indicators and reduced health service use, as well as enhanced feelings of security and increased satisfaction with health and social care services. However, a number of studies have demonstrated that these types of solutions often fail to be successfully implemented and adopted within routine healthcare. The goal of the study was to analyze attitude of tuberculosis patients and doctors and identify perceived opportunities and barriers to operate a Web portal. The perceptions of 30 tuberculosis patients and 18 doctors (10 general practitioners and 8 phthisiatricians) from Tomsk, Russia were collected through semi-structured interviews. The responses were analyzed using grounded theory and thematic analysis, in order to understand the participants' opinions and attitudes towards accepting tuberculosis web-portal in the treatment and rehabilitation process. We have recognized core topics that represented the participants' responses. These core topics indicated that most respondents mentioned "the potential of tuberculosis web-portal to establish a better communication between doctors and patients" and "the increased health status of the patients" as the most valuable outcomes of adopting the tool. Both doctors and patients also expressed their opinions on the usability of the solutions, with no significant concerns reported about its usability. The main barrier we identified was different expectations of doctors and patients: doctors expected that the portal would decrease the amount of paper work and will help them to quickly react in acute cases, however, the patients were disappointed that the portal did not allow them to be able to reach doctors on the 24/7 basis and have a consultation whenever they felt they needed it. Finally, our findings disclosed that participants appreciated the perceived clinical utility of the portal, which could further have an influence on their intention to use it. The findings from our reported study in the area of tuberculosis treatment and rehabilitation suggested that the participants generally accepted the introduction of web-portal for the purpose of reporting health status and getting recommendation from the doctors as an alternative to the traditional doctor visits.
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Portais do Paciente/estatística & dados numéricos , Pacientes/psicologia , Médicos/psicologia , Idoso , Agendamento de Consultas , Atitude Frente a Saúde , Segurança Computacional , Registros Eletrônicos de Saúde/organização & administração , Feminino , Nível de Saúde , Humanos , Internet , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Planejamento de Assistência ao Paciente/organização & administração , Pesquisa Qualitativa , Sistemas de Alerta , Federação Russa , Tuberculose/terapiaRESUMO
BACKGROUND: With the advent of the patient-centered care paradigm, it is important to examine what patients' reports of medication experience (PROME) mean to patient care. PROME available through a Web portal provide information on medication treatment options and outcomes from the patient's perspective. Patients who find certain PROME compelling are likely to mention them at their physician visit, triggering a discussion between the patient and the physician. However, no studies have examined PROME's potential applicability to patient care. OBJECTIVE: This study aimed to examine older (≥50 years) adults' perceptions of the health care applicability of a hypothetical PROME Web portal. Specifically, this study investigated whether PROME would facilitate patient-physician communication, and identified the preferred reporting items and the trusted sponsors of such a PROME Web portal. METHODS: We used a cross-sectional, self-administered, 5-point Likert scale survey to examine participants' perceptions of a hypothetical PROME Web portal that compared PROME for 5 common antihypertensive medications. Between August and December 2013, we recruited 300 members of 7 seniors' centers in a metropolitan area of a southeastern state of the United States to participate in the survey. RESULTS: An overwhelming majority of study participants (243/300, 81.0%) had a favorable perception of PROME's health care applicability. They were mostly positive that PROME would facilitate patient-physician communication, except for the perception that physicians would be upset by the mention of PROME (n=133, 44.3%). Further, 85.7% (n=257) of participants considered the PROME information trustworthy, and 72.0% (n=216) were willing to participate by reporting their own medication experiences. Study participants wanted the PROME Web portal to report the number of reviews, star ratings, and individual comments concerning different medication attributes such as side effects (224/809, 27.7%), cost (168/809, 20.8%), and effectiveness (153/809, 18.9%). Finally, the PROME Web portal sponsorship was important to participants, with the most trusted sponsor being academic institutions (120/400, 30.0%). CONCLUSIONS: PROME, if well compiled through Web portals, have the potential to facilitate patient-physician communication.
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Internet , Portais do Paciente , Assistência Centrada no Paciente/métodos , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Relações Médico-Paciente , Inquéritos e Questionários , Estados UnidosRESUMO
BACKGROUND: As providers develop an electronic health record-based infrastructure, patients are increasingly using Web portals to access their health information and participate electronically in the health care process. Little is known about how such portals are actually used. OBJECTIVE: In this paper, our goal was to describe the types and patterns of portal users in an integrated delivery system. METHODS: We analyzed 12 months of data from Web server log files on 2282 patients using a Web-based portal to their electronic health record (EHR). We obtained data for patients with cardiovascular disease and/or diabetes who had a Geisinger Clinic primary care provider and were registered "MyGeisinger" Web portal users. Hierarchical cluster analysis was applied to longitudinal data to profile users based on their frequency, intensity, and consistency of use. User types were characterized by basic demographic data from the EHR. RESULTS: We identified eight distinct portal user groups. The two largest groups (41.98%, 948/2258 and 24.84%, 561/2258) logged into the portal infrequently but had markedly different levels of engagement with their medical record. Other distinct groups were characterized by tracking biometric measures (10.54%, 238/2258), sending electronic messages to their provider (9.25%, 209/2258), preparing for an office visit (5.98%, 135/2258), and tracking laboratory results (4.16%, 94/2258). CONCLUSIONS: There are naturally occurring groups of EHR Web portal users within a population of adult primary care patients with chronic conditions. More than half of the patient cohort exhibited distinct patterns of portal use linked to key features. These patterns of portal access and interaction provide insight into opportunities for electronic patient engagement strategies.
Assuntos
Diabetes Mellitus/epidemiologia , Registros de Saúde Pessoal , Cardiopatias/epidemiologia , Telemedicina/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pennsylvania/epidemiologia , Atenção Primária à Saúde/estatística & dados numéricos , Telemedicina/métodosRESUMO
BACKGROUND: The National TB elimination programme (NTEP) is facilitating sub-national certification of "TB Free" status with benchmarks at every 20% reduction in incidence from the baseline of 2015. Drug consumption/sale is essential criteria to claim for the award. During the certification process in 10 districts of Madhya Pradesh in 2022, it was found that Nikshay Aushadhi (a web-based supply chain management portal) entries were incomplete or vacant in most of the districts and it was observed that quarterly drug requests were not sent using Nikshay Aushadhi. Hence, present study was planned to explore the perceived challenges and suggested solutions from provider perspective, pertaining to Nikshay Aushadhi portal. METHODS: A descriptive qualitative study with two distinct but interrelated phases. Free listing to identify the perceived challenges and suggested solutions pertaining to Nikshay Aushadhi followed with key informant interviews to explore in detail. Finally, the findings obtained were triangulated to increase the heterogeneity and validity of the results. RESULT: Major perceived challenges identified were i) interrupted internet accessibility ii) frequent changes in portal iii) inadequate testing of portal before deployment/updates iii) excess, unutilized field in the portal iv & v) lack of frequent and effective training vi) quarterly drug request is not felt need vii) increased workload viii) lack of lack of human resource ix) lack of job actualization, and x) lack of digital literacy. Four major themes for suggested solutions were: i) improve the internet accessibility ii) frequent and effective training iii) job actualization and iv) improve the portal interface. CONCLUSION: If the internet and portal related issues are sorted out, the health care workers should be able to run this portal smoothly. Capacity building of the NTEP staff is of utmost importance.
Assuntos
Antituberculosos , Humanos , Índia , Antituberculosos/uso terapêutico , Antituberculosos/provisão & distribuição , Tuberculose/tratamento farmacológico , Pesquisa Qualitativa , InternetRESUMO
BACKGROUND: The prevalence of type 2 diabetes mellitus (DM) and pre-diabetes mellitus (pre-DM) has been increasing among youth in recent decades in the United States, prompting an urgent need for understanding and identifying their associated risk factors. Such efforts, however, have been hindered by the lack of easily accessible youth pre-DM/DM data. OBJECTIVE: We aimed to first build a high-quality, comprehensive epidemiological data set focused on youth pre-DM/DM. Subsequently, we aimed to make these data accessible by creating a user-friendly web portal to share them and the corresponding codes. Through this, we hope to address this significant gap and facilitate youth pre-DM/DM research. METHODS: Building on data from the National Health and Nutrition Examination Survey (NHANES) from 1999 to 2018, we cleaned and harmonized hundreds of variables relevant to pre-DM/DM (fasting plasma glucose level ≥100 mg/dL or glycated hemoglobin ≥5.7%) for youth aged 12-19 years (N=15,149). We identified individual factors associated with pre-DM/DM risk using bivariate statistical analyses and predicted pre-DM/DM status using our Ensemble Integration (EI) framework for multidomain machine learning. We then developed a user-friendly web portal named Prediabetes/diabetes in youth Online Dashboard (POND) to share the data and codes. RESULTS: We extracted 95 variables potentially relevant to pre-DM/DM risk organized into 4 domains (sociodemographic, health status, diet, and other lifestyle behaviors). The bivariate analyses identified 27 significant correlates of pre-DM/DM (P<.001, Bonferroni adjusted), including race or ethnicity, health insurance, BMI, added sugar intake, and screen time. Among these factors, 16 factors were also identified based on the EI methodology (Fisher P of overlap=7.06×106). In addition to those, the EI approach identified 11 additional predictive variables, including some known (eg, meat and fruit intake and family income) and less recognized factors (eg, number of rooms in homes). The factors identified in both analyses spanned across all 4 of the domains mentioned. These data and results, as well as other exploratory tools, can be accessed on POND. CONCLUSIONS: Using NHANES data, we built one of the largest public epidemiological data sets for studying youth pre-DM/DM and identified potential risk factors using complementary analytical approaches. Our results align with the multifactorial nature of pre-DM/DM with correlates across several domains. Also, our data-sharing platform, POND, facilitates a wide range of applications to inform future youth pre-DM/DM studies.