Public health surveillance and the data, information, knowledge, intelligence and wisdom paradigm / Vigilancia de salud pública y el paradigma de datos, información, conocimiento, inteligencia y sabiduría / Vigilância em saúde pública e o paradigma de dados, informações, conhecimento, inteligência e sabedoria

ABSTRACT This article points out deficiencies in present-day definitions of public health surveillance, which include data collection, analysis, interpretation and dissemination, but not public health action. Controlling a public health problem of concern requires a public health response that goes beyond information dissemination. It is undesirable to have public health divided into data generation processes (public health surveillance) and data use processes (public health response), managed by two separate groups (surveillance experts and policy-makers). It is time to rethink the need to modernize the definition of public health surveillance, inspired by the authors' enhanced Data, Information, Knowledge, Intelligence and Wisdom model. Our recommendations include expanding the scope of public health surveillance beyond information dissemination to comprise actionable knowledge (intelligence); mandating surveillance experts to assist policy-makers in making evidence-informed decisions; encouraging surveillance experts to become policy-makers; and incorporating public health literacy training - from data to knowledge to wisdom - into the curricula for all public health professionals. Work on modernizing the scope and definition of public health surveillance will be a good starting point.

RESUMEN En este artículo se señalan las deficiencias de las definiciones actuales de la vigilancia de salud pública, que incluyen la recopilación, el análisis, la interpretación y la difusión de los datos, pero no las medidas de salud pública. El control de un problema de salud pública de interés exige una respuesta de salud pública que vaya más allá de la difusión de información. No es deseable que la salud pública esté dividida por un lado en procesos de generación de datos (vigilancia de salud pública) y por otro en procesos de uso de datos (respuesta de salud pública), gestionados por dos grupos diferentes (expertos en vigilancia y responsables de la formulación de políticas). Ha llegado el momento de replantear la necesidad de modernizar la definición de la vigilancia de salud pública tomando como referencia el modelo mejorado de Datos, Información, Conocimiento, Inteligencia y Sabiduría de los autores. Entre las recomendaciones que se proponen se encuentran las de ampliar el alcance de la vigilancia de salud pública más allá de la difusión de información para que incluya también el conocimiento aplicable (inteligencia); instar a los expertos en vigilancia a que presten ayuda a los responsables de la formulación de políticas en la toma de decisiones basadas en la evidencia; alentar a los expertos en vigilancia a que se conviertan en responsables de la formulación de políticas; e incorporar la formación en conocimientos básicos de salud pública (desde los datos hasta los conocimientos y la sabiduría) en los planes de estudio de todos los profesionales de la salud pública. Un buen punto de partida será trabajar en la modernización del alcance y la definición de la vigilancia de salud pública.

RESUMO Este artigo aponta deficiências nas definições atuais de vigilância em saúde pública, que incluem coleta, análise, interpretação e disseminação de dados, mas não ações de saúde pública. O controle de um problema preocupante de saúde pública exige uma resposta de saúde pública que vá além da disseminação de informações. A saúde pública não deve ser dividida em processos de geração de dados (vigilância em saúde pública) e processos de uso de dados (resposta de saúde pública) gerenciados por dois grupos distintos (especialistas em vigilância e formuladores de políticas). É hora de repensar a necessidade de modernizar a definição de vigilância em saúde pública, inspirada no modelo aprimorado de Dados, Informações, Conhecimento, Inteligência e Sabedoria dos autores. Nossas recomendações incluem: expansão do escopo da vigilância em saúde pública para além da disseminação de informações, de modo a abranger conhecimentos acionáveis (inteligência); obrigatoriedade de que os especialistas em vigilância auxiliem os formuladores de políticas na tomada de decisões baseadas em evidências; incentivo para que os especialistas em vigilância se tornem formuladores de políticas; e incorporação de capacitação em letramento em saúde pública (partindo dos dados para o conhecimento e em seguida para a sabedoria) nos currículos de todos os profissionais de saúde pública. O trabalho de modernizar o escopo e a definição de vigilância em saúde pública será um bom ponto de partida.

Aseguramiento y control de la calidad de los datos en un estudio de cohorte en Colombia

Introducción: La calidad de los datos facilita garantizar la fiabilidad de los estudios observacionales. Objetivo: Describir el aseguramiento y el control de calidad para mantener la fiabilidad y la validez del dato en un estudio de cohorte. Métodos: Presentar el manejo de datos implementado dentro de un seguimiento de enfermos renales crónicos cuya exposición fue un programa de protección renal comparado con el tratamiento convencional y su asociación con desenlaces clínicos. Se evaluó el cambio en la frecuencia de errores después de implementar el plan y la reproducibilidad del ingreso de registros a las bases de datos. Resultados: Se documentó una disminución progresiva en los errores cometidos en la captación de datos. El valor de Kappa entre los recolectores de la información para las variables clínicas más importantes fue 0,960 para la depuración de creatinina 150 mg/dL; 0,730 para la alteración del sedimento urinario; 0,956 para la asignación de estadio al ingreso. Los coeficientes de correlación intraclase para la identificación de las cifras de presión arterial sistólica fue 0,996; para la de presión arterial diastólica 0,993 y para los niveles de creatinina sérica al diagnóstico 0,995. Discusión: La calidad de los datos comienza con el reconocimiento de los retos y dificultades que implica su responsable captación, de ahí el aporte de la estandarización de los procesos y el personal que los lleve a cabo en forma idónea. Estudios evidencian que muchos procesos de mejora surgen en el desarrollo de la investigación sin protocolos preestablecidos. Conclusión: La reducción en la proporción y el tipo de error durante el proceso de captación de datos se debe a su identificación temprana y la corrección de instructivos, del instrumento de control de diligenciamiento y de la capacitación continua del personal. El análisis mostró una buena concordancia interevaluador.

Introduction: Data quality makes it easier to ensure that observational studies are reliable. Objective: To describe assurance and quality control to maintain data reliability and validity in a cohort study. Methodology: We present the data management strategies implemented in a study that followed patients of chronic kidney disease who were in a renal protection program and compared them with those undergoing conventional treatment to observe its association with clinical outcomes. We assessed the changes in error frequency after implementing the plan along with the reproducibility of the strategies for entering records into the databases. Results: We documented a progressive decrease of data collection errors. The Kappa values among data collectors for the most important variables were: 0.960 for creatinine clearance 150 mg/dl; 0.730 for urinary sediment alteration and 0.956 for stage allocation upon admission. The intraclass correlation coefficient for the identification of systolic blood pressure was 0.996; for diastolic blood pressure, the coefficient was 0.993 and for serum creatinine levels at diagnosis, the value was 0.995. Discussion: Data quality begins with the recognition of the challenges and difficulties involved in responsible data collection, hence the contribution of standardized processes and personnel to carry them out in a suitable manner. Studies show that many improvement processes arise in the development of research without pre-established protocols. Conclusion: The reduction in error ratio and type during the data collection process are the result of the early identification of erroneously entered or missing data, the correction of the guidelines for completing forms as well as of the instruments for detecting errors and continuous training of the staff. The analysis showed good inter-rater reliability.

An observational study of role of medical record department in tertiary care teaching hospital

Background: Medical record document explains all the details about the patient’s history, clinical findings, diagnostic test results, pre- and post-operative care, patient’s progress, and medication given. If written correctly, notes will support the doctor about the correctness of treatment. Aim and Objectives: Our objective was to study effectiveness and utility of medical record department at our medical college affiliated tertiary care institution. Materials and Methods: We did an observational study to determine various parameters of medical records such as consent, history and examination findings, pre-operative and intraoperative records, investigation documentation, nursing care chart, and concerned medical person’s signature. The study included 300 files. A medical record checklist was used as a tool for data collection. The study was conducted between January 2021 and January 2022. Data were collected, entered in Microsoft Excel spread sheet, and analyzed using percentage. Results: Out of the 300 files, 186 files belonged to different surgical specialties while the rest were of non-surgical fields. It was found that nursing assessment document was present in 78%, while discharged card copy was found attached in 75.33% files. Furthermore, surgical safety checklist was found in 89.24%, while signature of faculty was absent in 38.3% files. Conclusion: Medical record maintaining and keeping is an essential and vital part of health-care infrastructure, not only for data collection but also for calculating use of resources needed for better delivery of quality services to patients.

Analysis of clinical characteristics of adolescents undergoing metabolic and bariatric surgery / 国际外科学杂志

Objective:To analyze the clinical characteristics of obese adolescents undergoing metabolic and bariatric surgery for the purpose to guide clinical decision-making and practice of metabolic and bariatric surgery in adolescents.Methods:The perioperative clinical profile of 123 adolescent patients under the age of 21 years who underwent metabolic and bariatric surgery in Beijing Friendship Hospital, Capital Medical University from 2018 to 2021 were extracted, and compared their clinical data with the overall data of 6807 patients in the 2021 GC-MBD Annual Report. Analyzed the clinical characteristics of adolescent weight loss metabolic surgery patients from multiple aspects such as preoperative complications, surgical methods, surgical outcomes, and follow-up. Statistical analysis was conducted using SPSS25.0 software.Results:Among adolescent bariatric surgery patients, the proportion of female patients (74.0%) was higher than that of male patients (26.0%). Except for the incidence of polycystic ovary syndrome (31.9%), which was higher than the overall rate, the proportion of other related diseases or symptoms was low and usually mild. The changes of systolic blood pressure ( Z=-5.73, P<0.001), body weight ( Z=-5.69, P<0.001), umbilical abdominal circumference ( Z=-2.40, P=0.017), glycosylated hemoglobin ( Z=-5.23, P<0.001), fasting insulin ( Z=-2.95, P<0.003), fasting C-peptide ( Z=-4.59, P<0.001), triglyceride ( Z=-2.75, P=0.006) at 3 months after operation were statistically significant compared with those before operation. The changes of systolic blood pressure ( Z=-3.42, P=0.001), body weight ( Z=-5.14, P<0.001), umbilical abdominal circumference ( Z=-2.86, P=0.004) and glycosylated hemoglobin ( Z=-2.67, P<0.008), fasting C-peptide ( Z=-2.09, P=0.037), high-density lipoprotein ( Z=-2.08, P=0.038) at 6 months after operation were statistically significant compared with those before operation. Conclusions:The outcomes of bariatric surgery in obese adolescents are similar to those in adults. The indications and timing of bariatric surgery need to be further explored. In view of the high proportion of females, poor self-management ability and low follow-up compliance of adolescent patients, it is urgent to construct a full-cycle care model suitable for adolescent patients with bariatric surgery to improve their self-management ability, follow-up compliance and long-term clinical outcomes.

QGIS Application for Spatial and Temporal Visualisation of Data for Food Safety Audits in Malaysia

@#Introduction: Advancement in digital technology opens new doors for food safety auditors when it comes to performing food safety audits. Surge of Covid cases since year 2020 has seen an unprecedented switch to remote auditing by the Food Safety and Quality Programme under the arm of Ministry of Health in Malaysia. Methods: This paper presents the use of QGIS, an open-source cross-platform for geographic information system (GIS) to store, manage and visualise 2 types of data, i.e. real time data collected via a mobile device using QField, an open-source mobile application and also fixed data retrieved from existing database. New data from obtained from field sampling and surveillance presents updated information for food safety auditing and enforcement purposes. A total of 4972 datasets were obtained from the Ministry of Health’s Food Safety and Quality Division database on food factories from all 13 states and 3 federal territories in Malaysia. These datasets were transformed and stored into QGIS point layer for performing data classification analysis on clustering of HACCP, GMP and MeSTI certifications. Results: The Penang state has the most HACCP certified companies in fish and fish product category, Selangor is the highest for confectionery industry and Sabah for food services. The general output of mobile GIS provides a big picture of distribution of food safety certifications in Malaysia while more specific adoption of QField can assist in effective field work planning for enforcement officers and auditors leading to cost calculation via information on location, distance and time. Conclusion: QGIS application for spatial and temporal visualisation of data benefits the food safety auditing in Malaysia

Technical points of human use experience of ethnic medicine / 中国中药杂志

Ethnic medicine has a rich history of application. Because of the large number of ethnic groups, wide geographical distribution, and unique medical systems in China, the research on the human use experience(HUE) of ethnic medicine should combine the characteristics of ethnic medicine, be based on practical experience, and respect folk practice and tradition. The clinical positioning of ethnic medicine should consider three factors, i.e., population region, dominant diseases, and clinical demand. We should consider the development of traditional preparations that meet the needs of ethnic regions and encourage the development of new drugs that can be popularized and used nationwide for the dominant diseases of ethnic medicines. Attention should be paid to the problems such as a large number of customary articles or substitutes of ethnic medicinal materials, the phenomena of foreign bodies with the same name and different names for the same substance, the different standards of medicinal materials, and the poor processing standards. The name, processing method, source, medicinal parts, and dosage of ethnic medicinal materials or decoction pieces should be determined, and resources should be carefully evaluated to ensure the safety of medicinal resources and ecology. The preparation of ethnic medicine is mostly in the form of pills, powder, ointment, etc., with simple processing technology. The problems of low-quality stan-dards of some preparations, different prescriptions with the same name, and inconsistent processing technology should be overcome, and the process route and main process parameters should be clarified to lay the foundation for the subsequent empirical research on HUE. In the collection and analysis of the HUE data of ethnic medicine, the core guiding ideology of "patient-centered" should be established, and the experience data of patients should be collected. The problems of weak links existing in the inheritance of ethnic medicine should be solved, and flexible and diverse methods should be adopted. Meanwhile, on the premise of complying with the requirements of the principles of medical ethics, we should respect the religion, culture, and customs of ethnic areas to obtain the key HUE information of ethnic medicine. On the basis of the patient preference information and differences in regional disease epidemiology, population characteristics, and medical practice, whether the HUE conclusions of ethnic medicine can be extrapolated to patients outside the region is evaluated from the aspects of clinical benefits, risk tolerance, risk acceptance, etc. The HUE research on ethnic medicine is carried out in a clear way to guide the research and development of new ethnic medicines.

Desarrollo de instrumentos para estudiar el impacto en salud de las transformaciones urbanas en contextos de elevada vulnerabilidad: el estudio RUCAS / Developing tools to study the health impact of urban transformations in high vulnerability contexts: the RUCAS study / Desenvolvimento de instrumentos para estudar o impacto na saúde das transformações urbanas em contextos de alta vulnerabilidade: o estudo RUCAS

Este artículo describe el proceso de diseño y las características de un cuestionario y una pauta de observación intradomiciliaria desarrollados para evaluar tanto transversal como longitudinalmente la relación vivienda-barrio-salud en el marco de transformaciones urbanas llevadas a cabo en poblaciones de elevada vulnerabilidad socio-territorial. Los instrumentos se desarrollaron para el estudio longitudinal multimétodos RUCAS (Regeneración Urbana, Calidad de Vida y Salud), un experimento natural cuyo objetivo principal es evaluar el impacto en salud y calidad de vida de un programa de Regeneración de Conjuntos Habitacionales en dos conjuntos de vivienda social en Chile. El diseño de los instrumentos siguió cuatro etapas principales: (1) revisión narrativa de la literatura para definir las dimensiones del estudio, y de instrumentos existentes para identificar ítems apropiados para su medición; (2) validación de contenido con expertos; (3) pre-test; y (4) estudio piloto. El cuestionario resultante, compuesto de 262 ítems, tiene en cuenta las distintas etapas del ciclo vital y cuestiones de género. La pauta de observación intradomiciliaria (77 ítems) es aplicada por el/la encuestadora. Los instrumentos abordan (i) características de la situación residencial actual que sabidamente afectan la salud y serán intervenidas por el programa; (ii) dimensiones de la salud potencialmente afectadas por la situación residencial y/o por la intervención dentro de los plazos del estudio (4 años); (iii) otras condiciones de salud y relacionadas con la salud que sean relevantes, aun cuando no se verán modificadas dentro de los plazos del estudio, y (iv) dimensiones socioeconómicas, ocupacionales y demográficas relevantes. Los instrumentos han mostrado ser una herramienta capaz de abordar la multidimensionalidad de los procesos de transformación urbana en contextos de pobreza urbana en vivienda formal.

This article describes the design and characteristics of a questionnaire and an intradomiciliary observation tool developed to assess the housing-neighborhood-health relationship both cross-sectionally and longitudinally in the context of urban transformations carried out in populations of high socio-territorial vulnerability. The instruments were developed for the multi-method longitudinal study RUCAS (Urban Regeneration, Quality of Life and Health), a natural experiment aiming to assess the quality of life and health impact of a comprehensive Urban Regeneration Program in two social housing complexes in Chile. The design of the instruments followed four main stages: (1) narrative review of the literature to define the dimensions of the study, and of existing measurement instruments to identify appropriate items for measuring them; (2) content validation with experts; (3) pre-test; and (4) pilot study. The resulting questionnaire, composed of 262 items, considers the different stages of the life course and gender issues. The intradomiciliary observation tool (77 items) is applied by the interviewer. The instruments assess (i) characteristics of the current residential situation that are known to affect health and will be intervened by the program; (ii) dimensions of health potentially affected by the residential situation and/or by the intervention within the time frame of the study (4 years); (iii) other health and health-related conditions that are relevant, even if changes will not be modified within the time frame of the study; and (iv) relevant socioeconomic, occupational and demographic dimensions. The instruments have shown to be capable of addressing the multidimensionality of urban transformation processes in contexts of urban poverty in formal housing.

Este artigo descreve o processo de desenho e as características de um questionário e uma diretriz de observação intradomiciliar desenvolvida para avaliar, tanto transversal quanto longitudinalmente, a relação moradia-vizinhança-saúde no âmbito das transformações urbanas realizadas em populações de alta vulnerabilidade sócio-territorial. Os instrumentos foram desenvolvidos para o estudo longitudinal multimétodo RUCAS (Regeneração Urbana, Qualidade de Vida e Saúde), uma experiência natural destinada a avaliar a relação moradia-vizinhança-saúde e o impacto na saúde de um programa de regeneração habitacional em dois conjuntos habitacionais sociais no Chile. A concepção dos instrumentos seguiu quatro etapas principais: (1) revisão narrativa da literatura para definir as dimensões do estudo, e dos instrumentos existentes para identificar itens apropriados para a medição; (2) validação do conteúdo com especialistas; (3) pré-teste; e (4) estudo piloto. O questionário resultante, composto de 262 itens, leva em conta diferentes estágios do ciclo de vida e questões de gênero. A diretriz de observação intradomiciliar (77 itens) é aplicada pelo entrevistador. Os instrumentos abordam (i) características da situação atual da moradia que são conhecidas por afetar a saúde e serão intervencionadas pelo programa; (ii) dimensões da saúde potencialmente afetadas pela moradia e/ou pela intervenção dentro do prazo do estudo (4 anos); (iii) outras condições de saúde e relacionadas à saúde que são relevantes, mesmo que não sejam modificadas dentro do prazo do estudo; e (iv) dimensões sócioeconômicas, ocupacionais e demográficas relevantes. Os instrumentos projetados demonstraram ser uma ferramenta capaz de abordar a multidimensionalidade dos processos de transformação urbana em contextos de pobreza urbana na habitação formal.

Comparative analysis of the effectiveness of clinical data collection through online and physical electronic questionnaire in orthopedic patients / Análise comparativa da efetividade da coleta de dados clínicos por meio de questionários eletrônicos online e físicos em pacientes ortopédicos

ABSTRACT The collection of clinical data is an essential step for the development of any scientific research. Online digital data collection can optimize this step. Objective: To compare the response rate and the accuracy of the clinical data collection date through the online and physical digital questionnaire in orthopedic patients. Methods: Comparative study, level III of evidence, with forty patients who had ankle sprains were evaluated, followed up for a period of 12 weeks with the application of physical and digital Visual Analogue Scale, Foot Function Index and Cumberland Ankle Instability Tool questionnaires, and data were collected about the moment of collection of each questionnaire. Results: We obtained a response rate of 83.3% in the digital collection group and 60% in the physical collection group (p < 0.05), and the response rate in the digital collection group was higher at all times of collection (3, 6 and 12 weeks). Analysis of the time of collection shows greater variability in the larger physical collection group at all times of the study (2.8 vs 1.5; 4.0 vs 2.4; 8.6 vs 1.5). Conclusion: Digital data collection is effective for obtaining clinical data in patients with ankle sprains. Level of Evidence III, Comparative, Prospective, Longitudinal Study in Parallel Groups.

RESUMO A coleta de dados clínicos é etapa essencial para o desenvolvimento de qualquer pesquisa científica, e a coleta de dados digital online pode otimizá-la. Objetivo: Comparar o índice de resposta e a precisão da data de coleta de dados clínicos por meio de aplicação de questionário digital online e físico a pacientes ortopédicos. Métodos: Estudo comparativo realizado com 40 pacientes que apresentaram entorse de tornozelo, acompanhados pelo período de 12 semanas, com aplicação dos questionários escala visual analógica, foot function index e Cumberland ankle instability tool físicos e digitais. Além disso, foram recolhidos dados sobre o momento da coleta dos questionários. Resultados: Obtivemos índice de resposta de 83,3% no grupo de coleta digital e 60% no grupo de coleta física (p < 0,05), sendo que o índice de resposta no grupo de coleta digital foi maior em todos os momentos de coleta (3, 6 e 12 semanas). A análise do momento da coleta apresenta maior variabilidade no grupo de coleta física em todos os momentos do estudo (2,8 vs 1,5; 4,0 vs 2,4; 8,6 vs 1,5). Conclusão: A coleta de dados digital é efetiva para a obtenção dos dados clínicos de pacientes que apresentam entorse do tornozelo. Nível de Evidência III, Estudo Comparativo, Prospectivo, Longitudinal em Grupos Paralelos.

Five tips for conducting remote qualitative data collection in COVID times: theoretical and pragmatic considerations / Cinco dicas para realizar coleta remota de dados qualitativos em tempos de COVID: considerações teóricas e pragmáticas / Cinco sugerencias para realizar recolección remota de datos cualitativos en tiempos de COVID: consideraciones teóricas y pragmáticas

ABSTRACT Objective: To provide five methodological and pragmatic tips for conducting remote qualitative data collection during the context of the COVID-19 pandemic. Method: The tips presented in this article are drawn from insights of our own experiences as researchers conducting remote qualitative research and from the evidence from the literature on qualitative methods. The relevant literature was identified through searches using relevant keywords in the following databases: CINAHL, PubMed, SCOPUS, and Web of Science. Searches were limited to articles in English and Portuguese, published from 2010 to 2021, to ensure a current understanding of the phenomenon. Results: Five tips are provided: 1) Pay attention to ethical issues; 2) Identify and select potential participants; 3) Choose the type of remote interview; 4) Be prepared to conduct the remote interview; and 5) Build rapport with the participant. Conclusion: Despite the challenges in conducting remote data collection, strengths are also acknowledged and our experience has shown that it is feasible to recruit and interview participants remotely. The discussions presented in this article will benefit, now and in the future, other research teams who may consider collecting data for their qualitative studies remotely.

RESUMEN Objetivo: Proporcionar cinco consejos metodológicos y pragmáticos para el manejo de la recogida de datos cualitativos durante el contexto de la pandemia de COVID-19. Método: Los consejos presentados en este artículo son extraídos de insights de nuestras propias experiencias como investigadores que realizan investigaciones cualitativas remotas y de la evidencia de la literatura sobre métodos cualitativos. La literatura relevante fue identificada a través de búsquedas utilizando palabras clave relevantes en las siguientes bases de datos: CINAHL, PubMed, SCOPUS y Web of Science. Las búsquedas se limitaron a artículos en inglés y portugués publicados entre 2010 y 2021 para asegurar una comprensión actual del fenómeno. Resultados: Se ofrecen cinco consejos: 1) Preste atención a las cuestiones éticas; 2) Identifique y seleccione potenciales participantes; 3) Escoja el tipo de entrevista remota; 4) Esté preparado para coordinar la entrevista remota; y 5) Promueva el vínculo con su participante. Conclusiones: A pesar de los desafíos en el manejo de la recogida remota de datos, también se reconocen las fortalezas y nuestra experiencia ha demostrado que es viable reclutar y entrevistar participantes remotamente. Las discusiones presentadas en este artículo beneficiarán, ahora y en el futuro, a otros equipos de investigación que puedan considerar recopilar datos para sus estudios cualitativos de forma remota.

RESUMO Objetivo: Fornecer cinco dicas metodológicas e pragmáticas para conduzir coleta remota de dados qualitativos durante o contexto da pandemia de COVID-19. Método: As dicas apresentadas neste artigo são extraídas de insights de nossas próprias experiências como pesquisadores conduzindo pesquisas qualitativas remotas e das evidências da literatura sobre métodos qualitativos. A literatura relevante foi identificada por meio de pesquisas usando palavras-chave relevantes nas seguintes bases de dados: CINAHL, PubMed, SCOPUS e Web of Science. As buscas foram limitadas a artigos em inglês e português publicados de 2010 a 2021 para garantir uma compreensão atual do fenômeno. Resultados: Cinco dicas são fornecidas: 1) Esteja atento às questões éticas; 2) Identifique e selecione potenciais participantes; 3) Escolha o tipo de entrevista remota; 4) Esteja preparado para conduzir a entrevista remota; e 5) Estabeleça previamente vínculo com o participante. Conclusão: Apesar dos desafios na condução da coleta remota de dados, os pontos fortes também são reconhecidos e nossa experiência tem mostrado que é viável recrutar e entrevistar participantes remotamente. As discussões apresentadas neste artigo beneficiarão, atualmente e no futuro, outras equipes de pesquisa que possam considerar a coleta de dados para seus estudos qualitativos remotamente.

Uso da fotografia em pesquisas com crianças e adolescentes com condições crônicas: revisão integrativa / Uso de la fotografía en estudios con infantes y adolescentes con condiciones crónicas: revisión integradora / Use of photography in research with children and adolescents with chronic conditions: an integrative review

Resumo Objetivo Identificar estudos que utilizaram as técnicas de Foto-Elicitação e Photovoice como estratégia para coleta de dados com crianças e adolescentes com condições crônicas. Métodos Revisão integrativa da literatura, efetuada nas bases de dados Web of Science, CINAHL, MEDLINE, PsycINFO e LILACS, com busca de artigos publicados em inglês, português e espanhol, entre os anos 2010 e 2021. As buscas foram conduzidas entre os meses de fevereiro e abril de 2022. Os dados foram analisados de forma descritiva e organizados em categorias. Resultados Foram incluídos 28 artigos e, a partir do processo analítico, construíram-se as seguintes categorias: 1 - Vantagens do uso da Foto-Elicitação e do Photovoice; e 2 - Desafios no uso dessas técnicas. Conclusão A literatura é convergente ao considerar que a abordagem visual se configura como uma ferramenta facilitadora da comunicação das experiências de crianças e adolescentes com condições crônicas, ainda que possa apresentar alguns desafios na sua aplicabilidade.

Resumen Objetivo Identificar estudios que utilizaron las técnicas de foto-elicitación y fotovoz como estrategia de recopilación de datos con infantes y adolescentes con condiciones crónicas. Métodos Revisión integradora de la literatura, realizada en las bases de datos Web of Science, CINAHL, MEDLINE, PsycINFO y LILACS, con búsqueda de artículos publicados en inglés, portugués y español, entre los años 2010 y 2021. Las búsquedas se llevaron a cabo entre los meses de febrero y abril de 2022. Los datos se analizaron de forma descriptiva y se organizaron en categorías. Resultados Se incluyeron 28 artículos y, a partir del proceso analítico, se crearon las siguientes categorías: 1) Ventajas del uso de la foto-elicitación y de la fotovoz, 2) Desafíos del uso de estas técnicas. Conclusión La literatura es convergente al considerar que el enfoque visual se presenta como una herramienta facilitadora de la comunicación de las experiencias de infantes y adolescentes con condiciones crónicas, aunque puede presentar algunos desafíos para su aplicabilidad.

Abstract Objective To identify studies that used Photo-Elicitation and Photovoice techniques as a strategy for data collection with children and adolescents with chronic conditions. Methods This is an integrative literature review, carried out in the Web of Science, CINAHL, MEDLINE, PsycINFO and LILACS databases, with a search for articles published in English, Portuguese and Spanish, between 2010 and 2021. The searches were conducted between February and April 2022. Data were analyzed descriptively and organized into categories. Results A total of 28 articles were included and, based on the analytical process, the following categories were constructed: Advantages of using Photo-Elicitation and Photovoice; and Challenges in using these techniques. Conclusion The literature is converging when considering that the visual approach is configured as a tool that facilitates the communication of the experiences of children and adolescents with chronic conditions, although it may present some challenges in its applicability.

Grupo focal on-line para a coleta de dados de pesquisas qualitativas: relato de experiência / Grupo de enfoque en línea para la recopilación de datos de investigación cualitativa: reporte de experiencia / Online focus group for qualitative research data collection: experience report

Resumo Objetivo relatar o processo de desenvolvimento de grupo focal on-line como técnica de coleta de dados em pesquisas qualitativas. Método trata-se de relato de experiência do desenvolvimento de um grupo focal on-line para a coleta de dados com os enfermeiros docentes vinculados ao estágio supervisionado da Atenção Básica em Saúde de uma universidade pública do interior do Ceará, realizado em março de 2020. Resultados as fases de planejamento do grupo focal on-line síncrono foram: (1) estruturação da abordagem; (2) construção do instrumento-guia; (3) composição do grupo; e, (4) desenvolvimento do processo grupal. Este oportunizou a acessibilidade, a adesão dos participantes, a redução de custos, a menor abstenção dos participantes e a rapidez para coletar, registar e analisar os dados. Obteve-se resultado satisfatório, destacando-se como uma possibilidade concreta de técnica de coleta de dados, em pesquisas qualitativas. Conclusões e implicações para a prática a estratégia de coleta de dados por meio do grupo focal on-line pode contribuir para a construção do conhecimento na área da saúde e Enfermagem para a realização de pesquisas qualitativas.

Resumen Objetivo reportar el proceso de desarrollo de un grupo focal en línea como técnica de recolección de datos en investigación cualitativa. Método este es un relato de experiencia sobre el desarrollo de un grupo focal en línea para la recolección de datos con enfermeras docentes vinculadas a la pasantía supervisada de Atención Primaria de Salud en una universidad pública del interior de Ceará, realizada en marzo de 2020. Resultados las fases de planificación del grupo focal en línea sincrónico fueron: (1) estructuración del enfoque; (2) construcción del instrumento guía; (3) composición del grupo; y, (4) desarrollo del proceso de grupo. Esto proporcionó accesibilidad, adherencia de los participantes, reducción de costos, menor abstención de los participantes y rapidez en la recolección, registro y análisis de datos. Se obtuvo un resultado satisfactorio, destacándose como posibilidad concreta de técnica de recolección de datos en la investigación cualitativa. Conclusión e implicaciones para la práctica la estrategia de recolección de datos a través del grupo focal en línea puede contribuir a la construcción de conocimiento en el sector salud y enfermería para realizar investigaciones cualitativas.

Abstract Objective to report the process of developing an online focus group as a data collection technique in qualitative research. Method this is an experience report on the development of an online focus group for data collection with teaching nurses linked to the supervised internship of Primary Health Care at a public university in the interior of Ceará, carried out in March 2020. Results the planning phases of the synchronous online focus group were: (1) structuring of the approach; (2) construction of the guide instrument; (3) group composition; and, (4) development of the group process. This provided accessibility, participant adherence, cost reduction, less participant abstention and speed to collect, record and analyze data. A satisfactory result was obtained, standing out as a concrete possibility of data collection technique in qualitative research. Conclusion and implications for practice the data collection strategy through the online focus group can contribute to the construction of knowledge in the health sector and nursing to carry out qualitative research.

Current Status and Ethical Considerations of Data Collection and Application in Rare Disease Research / 中国医学伦理学

The research on rare diseases in China started relatively late, with scattered research resources and weak data foundation in epidemiology, diagnosis and treatment, and medication, which hinders its research progress. The rare disease data system is the foundation of rare disease research, and the ethical constraint on rare disease data collection is not only the protection of rare disease population, but also the need for the safety and quality of rare disease data. By analyzing and prospecting the current status of the construction of rare disease data systems, including the data of epidemiology, clinical diagnosis and treatment, drug trials, and follow-up to provide reference for the improvement of rare disease data systems. This paper explored the ethical issues to be followed in the process of rare disease data collection from the perspectives of justice, no harm, respect, sharing, and legalization, so as to improve the standardization of rare disease data collection and the understanding of data ethical review.

Electronic versus Paper-Based Data Collection for Conducting Health-Care Research: A Cost-Comparison Analysis

Background: Containing expenditure and efficient resource use is essential to limit the increasing costs of health research. Electronic data collection (EDC) is thought to reduce the costs compared to paper-based data collection (PDC). Objectives: As economic evidence in this area is scanty, especially in low- and middle-income countries, the objectives of the study are to perform an economic evaluation and compare the cost between EDC and PDC. Methods: A cost-comparison study was conducted to compare between EDC and PDC from the institutional perspective for the year 2018, based on a community?based survey. Step?down cost accounting was adopted with a bottom?up approach for cost estimation. Total and unit costs were estimated with the base case comparison between EDC and PDC while using SPSS software (e?SPSS and p?SPSS, respectively). We conducted scenario analyses based on the usage of different software, R and STATA for both EDC and PDC (e-R, p-R, e-STATA, and p-STATA, respectively). One-way and probabilistic sensitivity analysis (PSA) was performed to examine the robustness of the observed results. Results: In the base-case analysis, total costs of EDC and PDC were ?72,617 ($1060.9) and 87,717 ($1281.5), respectively, with estimated cost reduction of ?15,100 ($220.6). In other scenarios, the estimated cost reduction for e?R, e-STATA, p-R, p-STATA was ??274 ($4.0), 98 ($1.4), 14826 ($216.6), and 15,002 ($219.2), respectively, when compared to EDC?SPSS. On one-way and PSA, the results of the cost-comparison analysis were robust. Conclusion: EDC minimizes institutional cost for conducting health research. This finding will help researchers in efficiently planning for the budget for their research.

Joint Recommendations From The Latin American Association of Cardiac and Endovascular Surgery (LACES) and The Cardiovascular Anesthesia Committee of The Latin American Confederation of Anesthesia Societies (CLASA) on the Timing for Cardiac Surgery After COVID-19 Infection

ABSTRACT Introduction: Since the coronavirus disease 2019 (COVID-19) pandemic, cardiac surgeries in patients with previous infection by COVID-19 were suspended or postponed, which led to surgeries performed in patients with an advanced stage of their disease and an increase in the waiting list. There is a heterogeneous attitude in Latin America on the optimal timing to cardiac surgery in patients with previous COVID-19 infection due to scarce data on its outcome. Two Latin American associations joined to establish common suggestions on the optimal timing of surgery in patients with previous COVID-19 infection. Methods: Data collection was performed using a pre-established form, which included year of publication, objective, type of study (prospective/retrospective, descriptive/analytical), number of patients, year of study, waiting time between infection and surgery, type of surgery, morbidity, mortality, and conclusions regarding the association between mortality and morbidity. Final recommendations were approved by the board of directors of Latin American Association of Cardiac and Endovascular Surgery (LACES) and Latin American Confederation of Anesthesia Societies (CLASA). Results: Of the initial 1,016 articles, 11 comprised the final selection. Only six of them included patients who underwent cardiac surgery. According to the analyzed literature, optimal timing for cardiac surgery needs to consider the following aspects: deferable surgery, symptomatic COVID-19 infection, completeness of COVID-19 vaccination. Conclusion: These recommendations derive from the analysis of the scarce literature published at present on outcomes after cardiac surgery in patients with previous COVID-19 infection. These are to be taken as a dynamic recommendation in which Latin American reality was taken into consideration.

Método de captura y recaptura: una experiencia de su aplicación para determinar la incidencia de diabetes gestacional / Capture and recapture method: anexperience of itsapplication to estimatetheincidence of gestational diabetes

Los métodos de captura y recaptura (MCR) se emplean en la estimación de poblaciones mediante la utilización de diferentes fuentes de datos, disponibles e incompletas, que registran por separado un mismo evento. En esta metodología, las fuentes son utilizadas para extrapolar el número de individuos no registrados, usando la información recopilada sobre los individuos sí registrados. Este artículo describe todos los pasos de su aplicación práctica, a partir de un ejemplo de estimación de la incidencia de diabetes gestacional en una institución, a partir de cinco fuentes documentales. (AU)

Capture-recapture (CRM) methods are widely used to estimate populations by using different data sources, available and incomplete, that record the same event separately. In these methods, the available sources are used to extrapolate the number of unregistered individuals, using the information collected on the individuals that are registered. This article describes all the steps of its practical application, based on an example of estimating the incidence of gestational diabetes in an institution based on five documentary sources. (AU)

Continuing Qualitative Data Collection During the COVID 19 Pandemic: Lessons Learnt from A Study Among Tribes in Manipur, India

COVID-19 pandemic has caused disruptions in carrying out research activities in the field. The estab-lished methods of data collection for both qualitative and quantitative research could not be implement-ed. Researchers worldwide adopted contactless data collection methods, including the use of mobile phones for research purposes.This paper presents the experiences of conducting interviews among trib-al population using mobile phones in three villages of Manipur during the pandemic.The interviews proved to be successful and effective. Minor technical glitches were a challenge but were not significant to affect the quality of the data. During unprecedented times such as the current pandemic, conducting interviews via mobile phones could be a viable alternative to face-to-face interviews for collecting quali-tative data from the communities.

Challenges in developmental psychology research during the COVID-19 pandemic / Desafios da pesquisa em psicologia do desenvolvimento durante a pandemia da COVID-19 / Desafíos de la investigación en psicología del desarrollo durante la pandemia de COVID-19

The COVID-19 pandemic brought a series of restructurings necessary for research in Developmental Psychology. The aim of the manuscript is to discuss adaptations we made in our research in this context during the COVID-19 pandemic and to present strategies to adequate research protocols originally designed to occur in person. Although some contexts do not allow the continuity of studies, research at this time can bring essential contributions in this extreme period. This article explores the strategies for adapting recruitment procedures, suggesting dissemination platforms, and using social networks for this purpose. Guidelines are suggested for conducting non-face-to-face interviews with caregivers, ways of assessing the interaction of the mother-child pairs, and problematizing ethical issues. The procedures for returning the results, an ethical researcher commitment, may be improved by resources such as automatic reports. Besides, strategies for better dissemination of the results for the participants are suggested. (AU)

A pandemia COVID-19 trouxe uma série de reestruturações necessárias à pesquisa em Psicologia do Desenvolvimento. O objetivo deste artigo é discutir as adaptações que realizamos em pesquisas neste contexto durante a pandemia de COVID-19 e apresentar estratégias para adequação de protocolos de pesquisa originalmente planejados para ocorrer de forma presencial. Embora alguns contextos não permitam a continuidade dos estudos, pesquisas nesse momento podem trazer importantes contribuições sobre este período ímpar. No presente artigo são exploradas estratégias de adaptação dos procedimentos de recrutamento, sugeridas plataformas de divulgação e como melhor usar as redes sociais para esse fim. Também são descritos procedimentos para realização de entrevistas não presenciais com responsáveis, formas de avaliação da interação das duplas mãe-criança e problematizadas questões éticas. Os procedimentos de devolução dos resultados, um compromisso ético dos pesquisadores, podem ser facilitados por recursos como relatórios automáticos. Além disso, sugerimos estratégias para melhor divulgação dos resultados ao público participante. (AU)

La pandemia del COVID-19 trajo una serie de reestructuraciones necesarias para la investigación en Psicología del Desarrollo. El objetivo de este artículo es discutir las adaptaciones realizadas en las investigaciones en este contexto durante la pandemia de COVID-19 y presentar algunas estrategias para la adaptación de los protocolos de investigación originalmente planeados para ser presenciales. Si bien algunos contextos no permitan la continuidad de los estudios, la investigación en este momento puede aportar importantes avances sobre estos tiempos de crisis. Este artículo explora las estrategias para adaptar los procedimientos de contratación, sugiriendo algunas plataformas de difusión y la mejor manera de utilizar las redes sociales para este fin. También se describen los procedimientos para la realización de entrevistas no presenciales con padres o tutores legales, las formas de evaluar la interacción madre-hijo y las cuestiones éticas. Los procedimientos para la devolución de los resultados, un compromiso ético de los investigadores, pueden verse facilitados por funciones como informes automáticos. Además, se recomienda estrategias para una mejor difusión de los resultados al público participante. (AU)

Management strategies for implementing a multicenter cross-sectional study: lessons from the ADHERE Brazil study

ABSTRACT BACKGROUND: Epidemiological studies involving large samples usually face financial and operational challenges. OBJECTIVES: To describe the planning and execution of ADHERE Brazil, an epidemiological study on 1,105 kidney transplant patients, and report on how the study was structured, difficulties faced and solutions found. DESIGN AND SETTING: Cross-sectional multicenter study in 20 Brazilian kidney transplantation centers. METHODS: Actions developed in each phase of implementation were described, with emphasis on innovations used within the logistics of this study, aimed at estimating the prevalence of nonadherence to treatment. RESULTS: Coordination of activities was divided into four areas: general, regulatory, data collection and statistics. Weekly meetings were held for action planning. The general coordination team was in charge of project elaboration, choice of participating centers, definition of publication policy and monitoring other coordination teams. The regulatory team provided support to centers for submitting the project to ethics committees. The data collection team prepared a manual on the electronic collection system, scheduled web meetings and was available to respond to queries. It also monitored the data quality and reported any inadequacies found. Communication with the centers was through monthly reports via e-mail and distribution of exclusive material. The statistical team acted in all phases of the study, especially in creating the data analysis plan and data bank, generation of randomization lists and data extraction. CONCLUSIONS: Through these logistics, we collected high-quality data and built a local research infrastructure for further studies. We present supporting alternatives for conducting similar studies. CLINICAL TRIAL ANNOTATION: http://clinicaltrials.gov/ on October 10, 2013; NCT02066935.

Metodología de investigación en farmacogenética: estudios de casos y controles / Methodology for research in pharmacogenetics: Case-control studies

RESUMEN La farmacogenética estudia la asociación entre el fenotipo farmacológico de un individuo con su constitución genética, y el diseño de estudios de casos y controles es una metodología de uso frecuente. Este diseño consiste en que se analiza la frecuencia de las variantes genéticas en los casos, es decir, de los pacientes que presentan el fenotipo (desenlaces o resultados) comparado con los controles. Para obtener una calidad metodológica adecuada en este tipo de estudios es importante trabajar con fenotipos precisos, adecuada selección de los casos y controles y tamaño de la muestra; seleccionar una metodología adecuada para la identificación de variantes genéticas; y en el momento del análisis de resultados utilizar el Equilibrio de Hardy-Weinberg (EHW) e interpretar los resultados considerando la posibilidad de un fenómeno de fenoconversión.

ABSTRACT Pharmacogenetics studies the association between the pharmacological phenotype of an individual with his/her genetic constitution. Case-control studies is a commonly used methodology when performing pharmacogenetics research. This design analyses the frequency of genetic variants in cases; that is, of those patients who have a particular phenotype (outcomes or results) compared with controls. For obtaining adequate methodological quality in pharmacogenetic case-control studies, it is important to work with precise phenotypes, have adequate case and control selection and appropriate sample size; select an adequate methodology for the identification of genetic variants, analyze the results using Hardy-Weinberg Equilibrium (HWE); and interpret the results considering the possibility of a phenoconversion phenomenon.