Data Quality in Health Research: Integrative Literature Review.

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.

From Raw Data to FAIR Data: The FAIRification Workflow for Brazilian Tuberculosis Research.

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.

REDbox: a comprehensive semantic framework for data collection and management in tuberculosis research.

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.

Building Bridges for "Palliative Care-in-Place": Development of a mHealth Intervention for Informal Home Care.

Background: In Palliative Care (PC), family and close people are an essential part of provision of care. They assume highly complex tasks for which they are not prepared, with considerable physical, psychological, social and economic impact. Informal Caregivers (ICs) often falter in the final stage of life and develop distress, enhancing emotional burden and complicated grief. The lack of available and accessible in-person counselling resources is often reported by ICs. Online resources can promote early access to help and support for patient-IC dyads in palliative care. The primary aim of this research is to co-design, develop and test the feasibility of the Help2Care-PAL mHealth app that addresses the needs of ICs of palliative patients cared for at home. This Digital Health Intervention (DHI) in palliative care will be used for education, symptom management, communication and decision-making, to enhance Quality of Life (QoL) of patients and ICs, fostering anticipatory grief and the reach and efficiency of services. Methods: This study will use an iterative co-design process and convergent mixed-methods design, following the MORECare consensus for developing a complex intervention. Construction of the DHI will follow four main phases: (I) a needs assessment (a cross-sectional survey, individual interviews with ICs and focus groups with professionals with community palliative care experience); (II) design and co-production of mHealth materials and interventions to support ICs; (III) the development of a mHealth app; and (IV) usability and feasibility of the mHealth app. The Help2Care-PAL platform seeks to build resources from the perspectives and needs of both family dyads and nursing professionals working in the field of community palliative care. User-centeredness will be ensured by the active participation of patient-IC dyads and professionals of the palliative care community. Discussion: This mixed-method study will offer new insights on needs and expectations of patient-IC dyads and nurses in community palliative care regarding caregiving preparedness and online health resources. Through the implementation of an adaptive digital tool, we aim to improve access to palliative care family support, which is highly linked with the wellbeing of patients and especially new ICs.

A Mechanism for Verifying the Integrity and Immutability of Tuberculosis Data Using IOTA Distributed Ledger Technology.

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.

The use of indicators for the management of Mental Health Services.

OBJECTIVE: to identify indicators that can be used in the management of Mental Health Services. METHOD: an integrative review in which we adopted the Population, Concept, and Context strategy to formulate the following Guiding Question: "Which indicators can be used for the management of mental health services?". RESULTS: a total of 22 articles were included and divided into two main groups: countries with initial high income (54%) as well as low- and middle-income countries (46%). We identified 5 studies that had experienced the use of indicators, 5 studies that had reported partial implementation, 9 studies that did not report use or implementation, 1 study on the indicator selection process, 1 as an implementation pilot, and a final study with a discussion for implementation. High-income countries also find it difficult to implement mental health indicators. The main difficulties in adopting the use of indicators are lack of basic mental health services, financial resources, legislation, political interest, and guidelines for its management. CONCLUSION: it is unusual to find a descriptive comparison of quality monitoring programs at the system level in the technical-scientific literature related to mental health indicators.

The use of indicators for the management of Mental Health Services / O uso de indicadores para a gestão dos Serviços de Saúde Mental / El uso de indicadores para la gestión de Servicios de Salud Mental

Objective: to identify indicators that can be used in the management of Mental Health Services. Method: an integrative review in which we adopted the Population, Concept, and Context strategy to formulate the following Guiding Question: "Which indicators can be used for the management of mental health services?". Results: a total of 22 articles were included and divided into two main groups: countries with initial high income (54%) as well as low- and middle-income countries (46%). We identified 5 studies that had experienced the use of indicators, 5 studies that had reported partial implementation, 9 studies that did not report use or implementation, 1 study on the indicator selection process, 1 as an implementation pilot, and a final study with a discussion for implementation. High-income countries also find it difficult to implement mental health indicators. The main difficulties in adopting the use of indicators are lack of basic mental health services, financial resources, legislation, political interest, and guidelines for its management. Conclusion: it is unusual to find a descriptive comparison of quality monitoring programs at the system level in the technical-scientific literature related to mental health indicators.

Objetivo: identificar indicadores que possam ser utilizados na gestão dos Serviços de Saúde Mental. Método: revisão integrativa em que adotou-se a estratégia População, Conceito e Contexto para formular a seguinte questão norteadora: "Quais indicadores podem ser usados para a gestão dos serviços de saúde mental?". Resultados: um total de 22 artigos foram incluídos e divididos em dois grupos principais: países com renda inicial alta (54%), bem como países de baixa e média renda (46%). Identificamos 5 estudos que experimentaram o uso de indicadores, 5 estudos que relataram implementação parcial, 9 estudos que não relataram uso ou implementação, 1 estudo sobre o processo de seleção de indicadores, 1 como piloto de implementação e um estudo final com uma discussão para implementação. Os países de alta renda também têm dificuldade para implementar indicadores de saúde mental. As principais dificuldades na adoção do uso de indicadores são a falta de serviços básicos de saúde mental, recursos financeiros, legislação, interesse político e diretrizes para sua gestão. Conclusão: é incomum encontrar uma comparação descritiva de programas de monitoramento de qualidade no nível de sistema na literatura técnico-científica relacionada a indicadores de saúde mental.

Objetivo: identificar indicadores que se puedan utilizar en la gestión de Servicios de Salud Mental. Método: revisión integradora en la que adoptamos la estrategia Población, Concepto y Contexto para formular la siguiente Pregunta Orientadora: "¿Qué indicadores se pueden utilizar para la gestión de servicios de salud mental?". Resultados: se incluyó un total de 22 artículos y se los dividió en dos grupos principales: países con ingresos altos iniciales (54%) y países con ingresos bajos y medios (46%). Identificamos 5 estudios que habían experimentado el uso de indicadores, 5 estudios que habían reportado implementación parcial, 9 estudios que no reportaron uso o implementación, 1 estudio sobre el proceso de selección de indicadores, 1 como piloto de implementación y un estudio final con una discusión para la implementación. Los países de ingresos altos también tienen dificultades para implementar indicadores de salud mental. Las principales dificultades para adoptar el uso de indicadores son la falta de servicios básicos de salud mental, recursos económicos, legislación, interés político y directrices para su gestión. Conclusión: es inusual encontrar una comparación descriptiva de los programas de monitoreo de la calidad a nivel de sistema en la literatura técnico-científica relacionada con indicadores de salud mental.

Data Integration in the Brazilian Public Health System for Tuberculosis: Use of the Semantic Web to Establish Interoperability.

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.

Development of CART model for prediction of tuberculosis treatment loss to follow up in the state of São Paulo, Brazil: A case-control study.

BACKGROUND: Tuberculosis is the leading cause of infectious disease-related death, surpassing even the immunodeficiency virus. Treatment loss to follow up and irregular medication use contribute to persistent morbidity and mortality. This increases bacillus drug resistance and has a negative impact on disease control. OBJECTIVE: This study aims to develop a computational model that predicts the loss to follow up treatment in tuberculosis patients, thereby increasing treatment adherence and cure, reducing efforts regarding treatment relapses and decreasing disease spread. METHODS: This is a case-controlled study. Included in the data set were 103,846 tuberculosis cases from the state of São Paulo. They were collected using the TBWEB, an information system used as a tuberculosis treatment monitor, containing samples from 2006 to 2016. This set was later resampled into 6 segments with a 1-1 ratio. This ratio was used to avoid any bias during the model construction. RESULTS: The Classification and Regression Trees were used as the prediction model. Training and test sets accounted for 70% in the former and 30% in the latter of the tuberculosis cases. The model displayed an accuracy of 0.76, F-measure of 0.77, sensitivity of 0.80 and specificity of 0.71. The model emphasizes the relationship between several variables that had been identified in previous studies as related to patient cure or loss to follow up treatment in tuberculosis patients. CONCLUSION: It was possible to construct a predictive model for loss to follow up treatment in tuberculosis patients using Classification and Regression Trees. Although the fact that the ideal predictive ability was not achieved, it seems reasonable to propose the use of Classification and Regression Trees models to predict likelihood of treatment follow up to support healthcare professionals in minimising the loss to follow up.

A Permissioned Blockchain Network for Security and Sharing of De-identified Tuberculosis Research Data in Brazil.

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.

Decision Support Systems for Tuberculosis: Protocol for a Scoping Review.

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.

Blockchain Based Network for Tuberculosis: A Data Sharing Initiative in Brazil.

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.

Using Mental Health Indicators to Improve Health Care Management: A Web-based Approach.

Mental health indicators are essential for monitoring people's mental health status, developing mental health policies, and evaluating the performance of such policies. The aim of this paper is to describe the development of a web-based tool for mental health indicators capable to support the management of Brazilian mental health care networks. The SISAM is a web information system responsible for management and provision of mental health information in Brazil and it was chosen as the use case of this study. The indicators were developed as a decision support web tool for public health managers. The tool is able to calculate 11 indicators related to inpatient care. A descriptive analysis of all indicators is presented using SISAM data from 2017. The results generated by the tool are promising and could provide improvements on care monitoring, evaluation of possible trends and investments in prevention and promotion in mental health care.

Impact assessment on patients' satisfaction and healthcare professionals' commitment of software supporting Directly Observed Treatment, Short-course: A protocol proposal.

Doctors, nurses, and other healthcare professionals use software that affects the patients. Directly Observed Treatment, Short-course is the name given to the tuberculosis control strategy recommended by the World Health Organization. The main goal of this work is to propose a protocol for evaluating the impact of healthcare software supporting Directly Observed Treatment, Short-course on patients, healthcare professionals, and services. The proposed protocol consists of a set of instruments and steps. The instruments are reliable and validated existing questionnaires to be applied before and after using the software tool. The literature points out the need for standards on the software assessment. This is particularly critical when software affects patients directly. The present protocol is a universal tool to assess the impact of software used to support the fight against the tragedy of tuberculosis where a rigorous evaluation of IT in healthcare is highly recommended and of great importance.

Towards a Clinical Trial Protocol to Evaluate Health Information Systems: Evaluation of a Computerized System for Monitoring Tuberculosis from a Patient Perspective in Brazil.

Assessment of health information systems consider different aspects of the system itself. They focus or on the professional who will use the software or on its usability or on the software engineering metrics or on financial and managerial issues. The existent approaches are very resources consuming, disconnected, and not standardized. As the software becomes more critical in the health organizations and in patients, becoming used as a medical device or a medicine, there is an urgency to identify tools and methods that can be applied in the development process. The present work is one of the steps of a broader study to identify standardized protocols to evaluate the health information systems as medicines and medical devices are evaluated by clinical trials. The goal of the present work was to evaluate the effect of the introduction of an information system for monitoring tuberculosis treatment (SISTB) in a Brazilian municipality from the patients' perspective. The Patient Satisfaction Questionnaire and the Hospital Consumer Assessment of Healthcare Providers and Systems were answered by the patients before and after the SISTB introduction, for comparison. Patients from an outpatient clinic, formed the control group, that is, at this site was not implanted the SISTB. Descriptive statistics and mixed effects model were used for data analysis. Eighty-eight interviews were conducted in the study. The questionnaire's results presented better averages after the system introduction but were not considered statistically significant. Therefore, it was not possible to associate system implantation with improved patient satisfaction. The HIS evaluation need be complete, the technical and managerial evaluation, the safety, the impact on the professionals and direct and/or indirect impact on patients are important. Developing the right tools and methods that can evaluate the software in its entirety, from the beginning of the development cycle with a normalized scale, are needed.

A web-based information system for a regional public mental healthcare service network in Brazil.

BACKGROUND: Regional networking between services that provide mental health care in Brazil's decentralized public health system is challenging, partly due to the simultaneous existence of services managed by municipal and state authorities and a lack of efficient and transparent mechanisms for continuous and updated communication between them. Since 2011, the Ribeirao Preto Medical School and the XIII Regional Health Department of the Sao Paulo state, Brazil, have been developing and implementing a web-based information system to facilitate an integrated care throughout a public regional mental health care network. CASE PRESENTATION: After a profound on-site analysis, the structure of the network was identified and a web-based information system for psychiatric admissions and discharges was developed and implemented using a socio-technical approach. An information technology team liaised with mental health professionals, health-service managers, municipal and state health secretariats and judicial authorities. Primary care, specialized community services, general emergency and psychiatric wards services, that comprise the regional mental healthcare network, were identified and the system flow was delineated. The web-based system overcame the fragmentation of the healthcare system and addressed service specific needs, enabling: detailed patient information sharing; active coordination of the processes of psychiatric admissions and discharges; real-time monitoring; the patients' status reports; the evaluation of the performance of each service and the whole network. During a 2-year period of operation, it registered 137 services, 480 health care professionals and 4271 patients, with a mean number of 2835 accesses per month. To date the system is successfully operating and further expanding. CONCLUSION: We have successfully developed and implemented an acceptable, useful and transparent web-based information system for a regional mental healthcare service network in a medium-income country with a decentralized public health system. Systematic collaboration between an information technology team and a wide range of stakeholders is essential for the system development and implementation.