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1.
J Med Internet Res ; 25: e41446, 2023 10 31.
Article in English | MEDLINE | ID: mdl-37906223

ABSTRACT

BACKGROUND: Decision-making and strategies to improve service delivery must be supported by reliable health data to generate consistent evidence on health status. The data quality management process must ensure the reliability of collected data. Consequently, various methodologies to improve the quality of services are applied in the health field. At the same time, scientific research is constantly evolving to improve data quality through better reproducibility and empowerment of researchers and offers patient groups tools for secured data sharing and privacy compliance. OBJECTIVE: Through an integrative literature review, the aim of this work was to identify and evaluate digital health technology interventions designed to support the conducting of health research based on data quality. METHODS: A search was conducted in 6 electronic scientific databases in January 2022: PubMed, SCOPUS, Web of Science, Institute of Electrical and Electronics Engineers Digital Library, Cumulative Index of Nursing and Allied Health Literature, and Latin American and Caribbean Health Sciences Literature. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist and flowchart were used to visualize the search strategy results in the databases. RESULTS: After analyzing and extracting the outcomes of interest, 33 papers were included in the review. The studies covered the period of 2017-2021 and were conducted in 22 countries. Key findings revealed variability and a lack of consensus in assessing data quality domains and metrics. Data quality factors included the research environment, application time, and development steps. Strategies for improving data quality involved using business intelligence models, statistical analyses, data mining techniques, and qualitative approaches. CONCLUSIONS: The main barriers to health data quality are technical, motivational, economical, political, legal, ethical, organizational, human resources, and methodological. The data quality process and techniques, from precollection to gathering, postcollection, and analysis, are critical for the final result of a study or the quality of processes and decision-making in a health care organization. The findings highlight the need for standardized practices and collaborative efforts to enhance data quality in health research. Finally, context guides decisions regarding data quality strategies and techniques. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1101/2022.05.31.22275804.


Subject(s)
Benchmarking , Data Accuracy , Humans , Reproducibility of Results , Biomedical Technology , Checklist
2.
J Med Internet Res ; 25: e44641, 2023 07 27.
Article in English | MEDLINE | ID: mdl-37498666

ABSTRACT

BACKGROUND: The minimum data set (MDS) is a collection of data elements to be grouped using a standard approach to allow the use of data for clinical and research purposes. Health data are typically voluminous, complex, and sometimes too ambiguous to generate indicators that can provide knowledge and information on health. This complexity extends further to the rare disease (RD) domain. MDSs are essential for health surveillance as they help provide services and generate recommended population indicators. There is a bottleneck in international literature that reveals a global problem with data collection, recording, and structuring in RD. OBJECTIVE: This study aimed to identify and analyze the MDSs used for RD in health care networks worldwide and compare them with World Health Organization (WHO) guidelines. METHODS: The population, concept, and context methodology proposed by the Joanna Briggs Institute was used to define the research question of this systematic review. A total of 4 databases were reviewed, and all the processes were reported using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) methodology. The data elements were analyzed, extracted, and organized into 10 categories according to WHO digital health guidelines. The quality assessment used the STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) checklist. RESULTS: We included 20 studies in our review, 70% (n=14) of which focused on a specific health domain and 30% (n=6) of which referred to RD in general. WHO recommends that health systems and networks use standard terminology to exchange data, information, knowledge, and intelligence in health. However, there was a lack of terminological standardization of the concepts in MDSs. Moreover, the selected studies did not follow the same standard structure for classifying the data from their MDSs. All studies presented MDSs with limitations or restrictions because they covered only a specific RD, or their scope of application was restricted to a specific context or geographic region. Data science methods and clinical experience were used to design, structure, and recommend a fundamental global MDS for RD patient records in health care networks. CONCLUSIONS: Our study highlights the difficulties in standardizing and categorizing findings from MDSs for RD because of the varying structures used in different studies. The fundamental RD MDS designed in this study comprehensively covers the data needs in the clinical and management sectors. These results can help public policy makers support other aspects of their policies. We highlight the potential of our results to help strategic decisions related to RD. TRIAL REGISTRATION: PROSPERO CRD42021221593; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=221593. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1016/j.procs.2021.12.034.


Subject(s)
Administrative Personnel , Rare Diseases , Humans , Rare Diseases/therapy , Checklist , Data Science , Public Policy
3.
Stud Health Technol Inform ; 305: 331-334, 2023 Jun 29.
Article in English | MEDLINE | ID: mdl-37387031

ABSTRACT

Among the main factors that negatively influence the decision-making process, it is possible to highlight the low quality, availability, and integration of population health data. This study aims to highlight the difficulty of research based on tuberculosis data available in Brazil. The FAIR methodology is a solution for standardizing data and sharing information about the disease. All the main actors involved, including those who generate data and administrators of information systems, should be encouraged to know their strengths and weaknesses. Continuously fostering strategies to promote data quality is, therefore, a strong stimulus for strengthening national health information systems and can potentially benefit from recommendations on how to overcome the inherent limitations of these information systems. Data quality management in Brazilian tuberculosis information systems is still not carried out organized and systematically. According to the FAIR principles, the evaluation demonstrates only 37.75% of compliance.


Subject(s)
Administrative Personnel , Tuberculosis , Humans , Brazil , Workflow , Data Accuracy , Tuberculosis/diagnosis , Tuberculosis/therapy
4.
Stud Health Technol Inform ; 305: 373-376, 2023 Jun 29.
Article in English | MEDLINE | ID: mdl-37387043

ABSTRACT

Health guidelines inform recommendations for different clinical practices or public health policies. They are a simple way to organize and retrieve relevant information that can impact patient care. Although these documents are easy to use, most are not user-friendly because they are difficult to access. Our work aims to present the developing approach for a decision-making tool based on health guidelines to assist health professionals in caring for patients with tuberculosis. This tool is being developed for use on mobile devices and as a web-based system, which will transform a passive and declarative health guideline document into an interactive tool that will provide data, information, and knowledge. User tests with functional prototypes developed for the Android platform show that this application has the potential to be applied in TB healthcare facilities in the future.


Subject(s)
Mobile Applications , Humans , Computers, Handheld , Health Facilities , Health Personnel , Knowledge
5.
Stud Health Technol Inform ; 305: 558-561, 2023 Jun 29.
Article in English | MEDLINE | ID: mdl-37387091

ABSTRACT

Tuberculosis (TB) is one of the infectious diseases that currently causes the most deaths, with 6.4 million new cases recorded in 2021. Although it is a curable disease, drug-resistant strains emerge due to a lack of hygiene and low-quality or inappropriate medications, among other factors. With this in mind, the World Health Organization initiated the End TB Strategy campaign to improve the health system in the fight against tuberculosis. For this, reliable and high-quality health data is necessary to create effective public policies. However, despite technological advancements such as emerging concepts like Big Data and the Internet of Things, generating health information faces several obstacles. Therefore, the present work aims to describe a pipeline for TB research in Brazil to contribute to obtaining high-quality data.


Subject(s)
Tuberculosis , Humans , Brazil/epidemiology , Tuberculosis/epidemiology , Big Data , Data Accuracy , Internet
6.
Sci Rep ; 13(1): 7686, 2023 05 11.
Article in English | MEDLINE | ID: mdl-37169802

ABSTRACT

Clinical research outcomes depend on the correct definition of the research protocol, the data collection strategy, and the data management plan. Furthermore, researchers often need to work within challenging contexts, as is the case in tuberculosis services, where human and technological resources for research may be scarce. Electronic Data Capture Systems mitigate such risks and enable a reliable environment to conduct health research and promote result dissemination and data reusability. The proposed solution is based on needs pinpointed by researchers, considering the need for an accommodating solution to conduct research in low-resource environments. The REDbox framework was developed to facilitate data collection, management, sharing, and availability in tuberculosis research and improve the user experience through user-friendly, web-based tools. REDbox combines elements of the REDCap and KoBoToolbox electronic data capture systems and semantics to deliver new valuable tools that meet the needs of tuberculosis researchers in Brazil. The framework was implemented in five cross-institutional, nationwide projects to evaluate the users' perceptions of the system's usefulness and the information and user experience. Seventeen responses (representing 40% of active users) to an anonymous survey distributed to active users indicated that REDbox was perceived to be helpful for the particular audience of researchers and health professionals. The relevance of this article lies in the innovative approach to supporting tuberculosis research by combining existing technologies and tailoring supporting features.


Subject(s)
Semantics , User-Computer Interface , Humans , Data Collection , Health Personnel , Brazil
7.
Codas ; 35(2): e20220026, 2023.
Article in English | MEDLINE | ID: mdl-37098940

ABSTRACT

PURPOSE: The Orofacial Myofunctional Evaluation with Scores (OMES) protocol has been validated and used in clinical practice and research. The goals of this study were to develop, analyze and improve a version of OMES for the Web and to investigate the relationship between the usability judgments and the prior experience of the evaluators and whether using the interface promotes learning, as shown by the task completion time (TCT). METHODS: Study steps: 1) inspection of the prototype by the team; 2) evaluation of usability by three experienced speech-language pathologists (SLPs); and 3) evaluation of its usability by 12 SLPs with varying levels of experience in the use of OMES. Participants answered the Heuristic evaluation (HE), the Computer System Usability Questionnaire (CSUQ), and expressed free comments. The TCT was recorded. RESULTS: The OMES-Web reached excellent usability levels, and the participants were highly satisfied. The correlations between the participants' experience and the HE and CSUQ scores were not significant. The TCT decreased significantly throughout the tasks. CONCLUSION: OMES-Web meets the usability criteria, and participants feel satisfied with the system regardless of their level of experience. The fact that it is easy to learn favors its adoption by professionals.


Subject(s)
Learning , Movement Disorders , Humans , Reproducibility of Results , Severity of Illness Index
8.
CoDAS ; 35(2): e20220026, 2023. tab, graf
Article in English | LILACS-Express | LILACS | ID: biblio-1430234

ABSTRACT

ABSTRACT Purpose The Orofacial Myofunctional Evaluation with Scores (OMES) protocol has been validated and used in clinical practice and research. The goals of this study were to develop, analyze and improve a version of OMES for the Web and to investigate the relationship between the usability judgments and the prior experience of the evaluators and whether using the interface promotes learning, as shown by the task completion time (TCT). Methods Study steps: 1) inspection of the prototype by the team; 2) evaluation of usability by three experienced speech-language pathologists (SLPs); and 3) evaluation of its usability by 12 SLPs with varying levels of experience in the use of OMES. Participants answered the Heuristic evaluation (HE), the Computer System Usability Questionnaire (CSUQ), and expressed free comments. The TCT was recorded. Results The OMES-Web reached excellent usability levels, and the participants were highly satisfied. The correlations between the participants' experience and the HE and CSUQ scores were not significant. The TCT decreased significantly throughout the tasks. Conclusion OMES-Web meets the usability criteria, and participants feel satisfied with the system regardless of their level of experience. The fact that it is easy to learn favors its adoption by professionals.


RESUMO Objetivo O Protocolo de Avaliação Miofuncional Orofacial com Escores (AMIOFE) é validado e usado na prática clínica e pesquisas. Os objetivos deste estudo foram desenvolver, analisar e aprimorar a versão do AMIOFE para a Web e investigar a relação entre os julgamentos de usabilidade e a prévia experiência dos avaliadores, e se o manuseio da interface promove o aprendizado, baseado no tempo para completar a tarefa (TCT). Método Passos do estudo: 1) inspeção do protótipo pela equipe; 2) avaliação de usabilidade por três fonoaudiólogos experientes; e 3) avaliação de usabilidade por 12 fonoaudiólogos com variados níveis de experiência no uso do AMIOFE. Avaliação heurística (HE), Computer System Usability Questionnaire (CSUQ) e livre expressão dos participantes foram realizadas. O TCT foi registrado. Resultados O AMIOFE-Web atingiu ótimos níveis de usabilidade e os participantes mostram-se altamente satisfeitos (Escala geral do CSUQ; Média= 1,31, DP= 0,31). A relação da experiência dos participantes e a HE e o CSUQ não foi significativa. O TCT decresceu significantemente ao longo das tarefas, mostrando que o sistema é fácil de aprender e usar. Conclusão O AMIOFE-Web atende os critérios de usabilidade e os participantes sentiram-se satisfeitos com o sistema, independentemente de seus níveis de experiência. O fato de ser de fácil aprendizado é um fator favorável para a sua adoção por profissionais.

9.
Orphanet J Rare Dis ; 17(1): 84, 2022 02 24.
Article in English | MEDLINE | ID: mdl-35209917

ABSTRACT

The Brazilian Policy of Comprehensive Care for People with Rare Diseases (BPCCPRD) was established by the Ministry of Health to reduce morbidity and mortality and improve the quality of life of people with rare diseases (RD). Several laboratory tests, most using molecular genetic technologies, have been incorporated by the Brazilian Public Health System, and 18 specialised centres have so far been established at university hospitals (UH) in the capitals of the Southern, Southeastern and Northeastern regions. However, whether the available human and technological resources in these services are appropriate and sufficient to achieve the goals of care established by the BPCCPRD is unknown. Despite great advances in diagnosis, especially due to new technologies and the recent structuring of clinical assessment of RD in Brazil, epidemiological data are lacking and when available, restricted to specific disorders. This position paper summarises the performance of a nationally representative survey on epidemiology, clinical status, and diagnostic and therapeutic resources employed for individuals with genetic and non-genetic RD in Brazil. The Brazilian Rare Disease Network (BRDN) is under development, comprising 40 institutions, including 18 UH, 17 Rare Diseases Reference Services and five Newborn Screening Reference Services. A retrospective study will be initially conducted, followed by a prospective study. The data collection instrument will use a standard protocol with sociodemographic data and clinical and diagnostic aspects according to international ontology. This great collaborative network is the first initiative of a large epidemiological data collection of RD in Latin America, and the results will increase the knowledge of RD in Brazil and help health managers to improve national public policy on RD in Brazil.


Subject(s)
Quality of Life , Rare Diseases , Brazil/epidemiology , Humans , Infant, Newborn , Prospective Studies , Rare Diseases/genetics , Retrospective Studies
10.
Procedia Comput Sci ; 196: 525-532, 2022.
Article in English | MEDLINE | ID: mdl-35035622

ABSTRACT

Brazil is a large developing country that requires attention to regionalized behaviors regarding the dissemination of COVID-19. To deal with this complexity, the COVID-19 Brazil observatory was developed. The Portal aims to monitor and analyze data from different sources. Therefore, with a detailed audit, we centralized this information on the evolution of the disease, allowing for territorial and temporal monitoring. The daily publication of numbers about COVID-19 allowed anyone to follow the current scenario in several Brazilian cities. With about 1,7 million accesses, the Portal offers clarity and an easy understanding of the pandemic data in the country.

11.
Procedia Comput Sci ; 196: 655-662, 2022.
Article in English | MEDLINE | ID: mdl-35035625

ABSTRACT

Extracting information and discovering patterns from a massive dataset is a hard task. In an epidemic scenario, this data has to be integrated providing organization, agility, transparency and, above all, it has to be free of any type of censorship or bias. The aim of this paper is to analyze how coronavirus contamination has evolved in Brazil applying unsupervised analysis algorithms to extract information and find characteristics between them. To achieve this goal we describe an implementation that uses data about Covid-19 spread in Brazilian states (26 states and the federal district), applying a Time Series Clustering technique based on a K-Means variation, using Dynamic Time Warping as a similarity metric. We used data reported by the Ministry of Health in Brazil, referring to deaths per 100k inhabitants, during 452 days from the first reported death in each state. Two analyzes were performed, one considering 3 clusters and the other with 6 clusters. Through these analysis, 3 patterns of responses to the pandemic can be observed, ranging from one of greater to lesser control of the pandemic, although in recent months all clusters showed a highly increase in the number of deaths. The identification of these patterns is important to highlight possible actions and events, as well as other characteristics that determine the correct or incorrect public decision-making in combating the Covid-19 pandemic.

12.
Stud Health Technol Inform ; 279: 130-135, 2021 May 07.
Article in English | MEDLINE | ID: mdl-33965929

ABSTRACT

BACKGROUND: Intensified research and innovation and rapid uptake of new tools, interventions, and strategies are crucial to fight Tuberculosis, the world's deadliest infectious disease. The sharing of health data remains a significant challenge. Data consumers must be able to verify the consistency and integrity of data. Solutions based on distributed ledger technologies may be adequate, where each member in a network holds a unique credential and stores an identical copy of the ledger and contributes to the collective process of validating and certifying digital transactions. OBJECTIVES: This work proposes a mechanism and presents a use case in Digital Health to allow the verification of integrity and immutability of TB electronic health records. METHODS: IOTA was selected as a supporting tool due to its data immutability, traceability and tamper-proof characteristics. RESULTS: A mechanism to verify the integrity of data through hash functions and the IOTA network is proposed. Then, a set of TB related information systems was integrated with the network. CONCLUSION: IOTA technology offers performance and flexibility to enable a reliable environment for electronic health records.


Subject(s)
Electronic Health Records , Tuberculosis , Delivery of Health Care , Humans , Technology , Tuberculosis/prevention & control
13.
JMIR Res Protoc ; 10(1): e24826, 2021 Jan 22.
Article in English | MEDLINE | ID: mdl-33480849

ABSTRACT

BACKGROUND: A rare disease is a medical condition with low prevalence in the general population, but these can collectively affect up to 10% of the population. Thus, rare diseases have a significant impact on the health care system, and health professionals must be familiar with their diagnosis, management, and treatment. OBJECTIVE: This paper aims to provide health indicators regarding the rare diseases in Brazil and to create a network of reference centers with health professionals from different regions of the country. RARASnet proposes to map, analyze, and communicate all the data regarding the infrastructure of the centers and the patients' progress or needs. The focus of the proposed study is to provide all the technical infrastructure and analysis, following the World Health Organization and the Brazilian Ministry of Health guidelines. METHODS: To build this digitized system, we will provide a security framework to assure the privacy and protection of each patient when collecting data. Systems development life cycle methodologies will also be applied to align software development, infrastructure operation, and quality assurance. After data collection of all information designed by the specialists, the computational analysis, modeling, and results will be communicated in scientific research papers and a digital health observatory. RESULTS: The project has several activities, and it is in an initial stage. Initially, a survey was given to all health care centers to understand the technical aspects of each network member, such as the existence of computers, technical support staff, and digitized systems. In this survey, we detected that 59% (23/39) of participating health units have electronic medical records, while 41% (16/39) have paper records. Therefore, we will have different strategies to access the data from each center in the data collection phase. Later, we will standardize and analyze the clinical and epidemiological data and use these data to develop a national network for monitoring rare diseases and a digital health observatory to make the information available. The project had its financing approved in December 2019. Retrospective data collection started in October 2020, and we expect to finish in January 2021. During the third quarter of 2020, we enrolled 40 health institutions from all regions of Brazil. CONCLUSIONS: The nature of rare disease diagnosis is complex and diverse, and many problems will be faced in the evolution of the project. However, decisions based on data analysis are the best option for the improvement of the rare disease network in Brazil. The creation of RARASnet, along with all the digitized infrastructure, can improve the accessibility of information and standardization of rare diseases in the country. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/24826.

14.
Esc. Anna Nery Rev. Enferm ; 25(1): e20190343, 2021. tab, graf
Article in Portuguese | BDENF - Nursing, LILACS | ID: biblio-1124793

ABSTRACT

RESUMO Objetivo descrever o processo de construção, avaliação e adequação de vídeos educativos sobre aplicação de insulina direcionados a pacientes adultos e cuidadores. Método estudo metodológico, de caráter descritivo, realizado em três fases: construção, avaliação e adequação. A construção dos vídeos foi realizada com base em revisão de literatura e no protocolo do município. A avaliação foi realizada com experts, por meio de um instrumento construído pelos pesquisadores. O nível de concordância entre os experts foi avaliado pelo índice de validade do conteúdo, que orientou o processo de adequação do material. Resultados os vídeos foram construídos contemplando os principais pontos críticos relacionados à aplicação de insulina. Os itens que obtiveram índice de validade de conteúdo < 0,8 foram reformulados. Conclusão e Implicações para a prática foram produzidos dois vídeos que abordam o transporte, armazenamento, preparo e aplicação da insulina, descarte de perfurocortantes e monitorização da glicemia. Os vídeos educativos construídos podem ser considerados ferramentas facilitadoras do processo de educação em diabetes mellitus e úteis na uniformização de orientações. A descrição do processo de construção, avaliação e adequação pode encorajar outros profissionais a desenvolver materiais que respondam às necessidades de seus contextos de trabalho e assim melhorar e qualificar o cuidado às pessoas.


RESUMEN Objetivo describir el proceso de construcción, evaluación y adecuación de vídeos educativos sobre la aplicación de insulina dirigidos a pacientes adultos y cuidadores. Método estudio de carácter descriptivo realizado en tres fases: construcción, evaluación y adecuación. La construcción de los vídeos se realizó en base a una revisión de la literatura y en el protocolo del municipio. La evaluación se realizó con expertos, utilizando un instrumento construido por los investigadores, el nivel de acuerdo entre los expertos se evaluó mediante el índice de validez de contenido, que guió el proceso de adaptación del material. Resultados los vídeos fueron construidos cubriendo los principales puntos críticos relacionados con la aplicación de insulina. Los ítems que obtuvieron un índice de validez de contenido <0.8 fueron reformulados. Conclusión e Implicaciones para la práctica se realizaron dos vídeos que abordan el transporte, el almacenamiento, la preparación y la aplicación de insulina, la eliminación de objetos punzantes y el control de la glucosa en sangre. Los vídeos educativos construidos pueden considerarse herramientas que facilitan el proceso de educación en diabetes mellitus y útiles para estandarizar las pautas. La descripción del proceso de construcción, evaluación y adaptación puede alentar a otros profesionales a desarrollar materiales que respondan a las necesidades de sus contextos de trabajo y así mejorar la atención a las personas.


ABSTRACT Objective to describe the process of development, evaluation, and adaptation of educational videos on insulin application whose target audience was adult patients and caregivers. Methods descriptive and methodological study, carried out in three phases: development, evaluation, and adaptation. The development of the videos was based on a literature review and the municipality's protocol. The evaluation was carried out by experts by applying an instrument designed by the researchers, and the level of agreement between the experts was assessed by the content validity index, which guided the material adaptation process. Results the videos were developed to address the main critical points related to insulin application. The items that obtained a content validity index < 0.8 were reformulated. Conclusion and implications for practice two videos were made addressing insulin transport, storage, preparation and application, sharps disposal, and blood glucose monitoring. The educational videos made in the present study can be considered tools that contribute to education in diabetes mellitus and are useful for standardizing guidelines. The description of the development, evaluation, and adaptation process can encourage other professionals to develop materials that meet the needs found in their work contexts and, consequently, improve and qualify the care provided to their patients.


Subject(s)
Humans , Audiovisual Aids , Patient Education as Topic , Diabetes Mellitus, Type 1/drug therapy , Insulin/administration & dosage , Self Care , Insulin/therapeutic use
15.
Rev Soc Bras Med Trop ; 53: e20200550, 2020.
Article in English | MEDLINE | ID: mdl-33111917

ABSTRACT

INTRODUCTION: Five months after the first confirmed case of COVID-19 in Brazil, the country has the second highest number of cases in the world. Without any scientifically proven drug or vaccine available combined with COVID-19's high transmissivity, slowing down the spread of the infection is a challenge. In an attempt to save the economy, the Brazilian government is slowly beginning to allow non-essential services to reopen for in-person customers. METHODS: In this study, we analyze, based on data analysis and statistics, how other countries evolve and under which conditions they decided to resume normal activity. In addition, due to the heterogeneity of Brazil, we explore Brazilian data of COVID-19 from the State Health Secretaries to evaluate the situation of the pandemic within the states. RESULTS: Results show that while other countries have flattened their curves and present low numbers of active cases, Brazil continues to see an increase in COVID-19 patients. Furthermore, a number of important states are easing restrictions despite a high percentage of confirmed cases. CONCLUSIONS: All analyses show that Brazil is not ready for reopening, and the premature easing of restrictions may increase the number of COVID-19-related deaths and cause the collapse of the public health system.


Subject(s)
Betacoronavirus , Coronavirus Infections , Pandemics , Pneumonia, Viral , Brazil/epidemiology , COVID-19 , Humans , SARS-CoV-2
16.
JMIR Med Inform ; 8(7): e17176, 2020 Jul 06.
Article in English | MEDLINE | ID: mdl-32628611

ABSTRACT

BACKGROUND: Interoperability of health information systems is a challenge due to the heterogeneity of existing systems at both the technological and semantic levels of their data. The lack of existing data about interoperability disrupts intra-unit and inter-unit medical operations as well as creates challenges in conducting studies on existing data. The goal is to exchange data while providing the same meaning for data from different sources. OBJECTIVE: To find ways to solve this challenge, this research paper proposes an interoperability solution for the tuberculosis treatment and follow-up scenario in Brazil using Semantic Web technology supported by an ontology. METHODS: The entities of the ontology were allocated under the definitions of Basic Formal Ontology. Brazilian tuberculosis applications were tagged with entities from the resulting ontology. RESULTS: An interoperability layer was developed to retrieve data with the same meaning and in a structured way enabling semantic and functional interoperability. CONCLUSIONS: Health professionals could use the data gathered from several data sources to enhance the effectiveness of their actions and decisions, as shown in a practical use case to integrate tuberculosis data in the State of São Paulo.

17.
Methods Inf Med ; 59(6): 205-218, 2020 12.
Article in English | MEDLINE | ID: mdl-33862661

ABSTRACT

BACKGROUND: Tuberculosis (TB) is an infectious disease and is among the top 10 causes of death in the world, and Brazil is part of the top 30 high TB burden countries. Data collection is an essential practice in health studies, and the adoption of electronic data capture (EDC) systems can positively increase the experience of data acquisition and analysis. Also, data-sharing capabilities are crucial to the construction of efficient and effective evidence-based decision-making tools for managerial and operational actions in TB services. Data must be held secure and traceable, as well as available and understandable, for authorized parties. OBJECTIVES: In this sense, this work aims to propose a blockchain-based approach to build a reusable, decentralized, and de-identified dataset of TB research data, while increasing transparency, accountability, availability, and integrity of raw data collected in EDC systems. METHODS: After identifying challenges and gaps, a solution was proposed to tackle them, considering its relevance for TB studies. Data security issues are being addressed by a blockchain network and a lightweight and practical governance model. Research Electronic Data Capture (REDCap) and KoBoToolbox are used as EDC systems in TB research. Mechanisms to de-identify data and aggregate semantics to data are also available. RESULTS: A permissioned blockchain network was built using Kaleido platform. An integration engine integrates the EDC systems with the blockchain network, performing de-identification and aggregating meaning to data. A governance model addresses operational and legal issues for the proper use of data. Finally, a management system facilitates the handling of necessary metadata, and additional applications are available to explore the blockchain and export data. CONCLUSIONS: Research data are an important asset not only for the research where it was generated, but also to underpin studies replication and support further investigations. The proposed solution allows the delivery of de-identified databases built in real time by storing data in transactions of a permissioned network, including semantic annotations, as data are being collected in TB research. The governance model promotes the correct use of the solution.


Subject(s)
Blockchain , Tuberculosis , Brazil , Computer Security , Data Management , Humans
18.
Rev. Soc. Bras. Med. Trop ; 53: e20200550, 2020. graf
Article in English | Sec. Est. Saúde SP, Coleciona SUS, LILACS | ID: biblio-1136845

ABSTRACT

Abstract INTRODUCTION Five months after the first confirmed case of COVID-19 in Brazil, the country has the second highest number of cases in the world. Without any scientifically proven drug or vaccine available combined with COVID-19's high transmissivity, slowing down the spread of the infection is a challenge. In an attempt to save the economy, the Brazilian government is slowly beginning to allow non-essential services to reopen for in-person customers. METHODS: In this study, we analyze, based on data analysis and statistics, how other countries evolve and under which conditions they decided to resume normal activity. In addition, due to the heterogeneity of Brazil, we explore Brazilian data of COVID-19 from the State Health Secretaries to evaluate the situation of the pandemic within the states. RESULTS: Results show that while other countries have flattened their curves and present low numbers of active cases, Brazil continues to see an increase in COVID-19 patients. Furthermore, a number of important states are easing restrictions despite a high percentage of confirmed cases. CONCLUSIONS: All analyses show that Brazil is not ready for reopening, and the premature easing of restrictions may increase the number of COVID-19-related deaths and cause the collapse of the public health system.


Subject(s)
Humans , Pneumonia, Viral , Coronavirus Infections , Pandemics , Betacoronavirus , Brazil/epidemiology
19.
Stud Health Technol Inform ; 262: 101-104, 2019 Jul 04.
Article in English | MEDLINE | ID: mdl-31349276

ABSTRACT

Tuberculosis (TB) represents a global challenge in terms of prevention, care and control. Decision support systems (DSS) can supply the necessary knowledge basis to underpin investigators, policy makers and health personnel actions and to provide crucial elements that can help reducing TB burden. Thus, the objectives of this work are to present the protocol to be followed for carrying out a scoping review to identify topics where DSSs are used, to define appropriate categories and to clarify main outcomes and research gaps. As part of the protocol, five electronic bibliographic databases will be searched for articles from 2006 to 2019 and two investigators will independently screen each work using the study inclusion criteria. Data extraction will be performed, and findings will be reported. The results will be used to provide a broad understanding of how DSSs for TB are being used.


Subject(s)
Decision Support Systems, Clinical , Tuberculosis , Delivery of Health Care , Health Personnel , Humans , Research Design , Research Personnel , Review Literature as Topic , Tuberculosis/therapy
20.
Stud Health Technol Inform ; 262: 264-267, 2019 Jul 04.
Article in English | MEDLINE | ID: mdl-31349318

ABSTRACT

Data sharing, information exchange, knowledge acquisition and health intelligence are the basis of an efficient and effective evidence-based decision-making tool. A decentralized blockchain architecture is a flexible solution that can be adapted to institutional and managerial culture of organizations and services. Blockchain can play a fundamental role in enabling data sharing within a network and, to achieve that, this work defines the high-level resources necessary to apply this technology to Tuberculosis related issues. Thus, relying in open-source tools and in a collaborative development approach, we present a proposal of a blockchain based network, the TB Network, to underpin an initiative of sharing of Tuberculosis scientific, operational and epidemiologic data between several stakeholders across Brazilian cities.


Subject(s)
Computer Security , Tuberculosis , Brazil , Confidentiality , Humans , Information Dissemination
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