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3.
J Med Internet Res ; 23(3): e22219, 2021 03 02.
Artículo en Inglés | MEDLINE | ID: mdl-33600347

RESUMEN

Coincident with the tsunami of COVID-19-related publications, there has been a surge of studies using real-world data, including those obtained from the electronic health record (EHR). Unfortunately, several of these high-profile publications were retracted because of concerns regarding the soundness and quality of the studies and the EHR data they purported to analyze. These retractions highlight that although a small community of EHR informatics experts can readily identify strengths and flaws in EHR-derived studies, many medical editorial teams and otherwise sophisticated medical readers lack the framework to fully critically appraise these studies. In addition, conventional statistical analyses cannot overcome the need for an understanding of the opportunities and limitations of EHR-derived studies. We distill here from the broader informatics literature six key considerations that are crucial for appraising studies utilizing EHR data: data completeness, data collection and handling (eg, transformation), data type (ie, codified, textual), robustness of methods against EHR variability (within and across institutions, countries, and time), transparency of data and analytic code, and the multidisciplinary approach. These considerations will inform researchers, clinicians, and other stakeholders as to the recommended best practices in reviewing manuscripts, grants, and other outputs from EHR-data derived studies, and thereby promote and foster rigor, quality, and reliability of this rapidly growing field.


Asunto(s)
/epidemiología , Recolección de Datos/métodos , Registros Electrónicos de Salud , Recolección de Datos/normas , Humanos , Revisión de la Investigación por Pares/normas , Edición/normas , Reproducibilidad de los Resultados , /aislamiento & purificación
4.
Value Health ; 24(2): 268-273, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-33518033

RESUMEN

OBJECTIVES: Orphan medicinal products (OMPs) often receive market authorization under conditions imposed by regulators for ongoing postauthorization surveillance (PAS) to answer questions that remain at the time of market entry. This surveillance may be provided through industry-funded registries (IFRs). Nevertheless, data in these registries may not be of sufficient quality to answer these questions and may not always be accessible for regulatory review. We propose that a mandatory independent registry is an efficient and cost-effective tool for PAS for OMPs. METHODS: Using data from the Canadian Fabry Disease Initiative, we reviewed costs per unique patient from sites participating in both the independent national registry and IFRs for Fabry disease and compared data completeness from the Canadian Fabry Disease Initiative to that in published documents from IFRs. RESULTS: The costs of data collection through the independent registry were 17% to 36% (depending on site) lower than costs to collect data in the IFRs, and completeness of data collected through the independent registry was higher than that through the IFRs. Data from the independent registry were reviewed annually to guide indications for publicly funded Fabry disease therapy. Even when enrollment ceased to be a requirement to receive therapy, 77% of patients continued to enroll in the registry, suggesting the structure was acceptable to patients. CONCLUSIONS: Independent registries are cost-effective and efficient tools and should be mandated by regulatory agencies as the preferred tool for PAS for OMPs. Countries with publicly funded health systems should consider investment in registry infrastructure for OMPs.


Asunto(s)
Recolección de Datos/métodos , Producción de Medicamentos sin Interés Comercial/estadística & datos numéricos , Vigilancia de Productos Comercializados/métodos , Sistema de Registros , Canadá , Análisis Costo-Beneficio , Recolección de Datos/economía , Terapia de Reemplazo Enzimático/métodos , Enfermedad de Fabry/tratamiento farmacológico , Humanos
5.
Methods Mol Biol ; 2243: 355-368, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33606268

RESUMEN

Recent scientific advancements in the field of genetics have fostered significant changes for the criminal justice system. Growing National DNA databases, public DNA databases, private direct-to-consumer (DTC) DNA testing companies, and improvements in next-generation sequencing (NGS) have resulted in effective methods for tracking down criminals and exonerating the innocent. While these recently discovered and profound techniques seem to provide benefits, their use in forensic detection has become subject to harsh legal opposition. Ultimately, should law enforcement be permitted to analyze DNA found at crime scenes and DNA that has accumulated in national, public, and private databases to aid in their investigations, or are individuals' privacy rights breached in the process?


Asunto(s)
ADN/genética , Genética Forense/métodos , Dermatoglifia del ADN/métodos , Análisis de Datos , Recolección de Datos/métodos , Manejo de Datos/métodos , Bases de Datos de Ácidos Nucleicos , Técnicas Genéticas , Secuenciación de Nucleótidos de Alto Rendimiento/métodos , Humanos
6.
Trials ; 22(1): 117, 2021 Feb 05.
Artículo en Inglés | MEDLINE | ID: mdl-33546716

RESUMEN

This article describes how one trial site of the Refugee Emergency: Defining and Implementing Novel Evidence-based psychosocial interventions (RE-DEFINE) study, designed to evaluate a Self Help+ intervention with Arabic-speaking refugees and asylum seekers currently living in the UK and experiencing stress, was adapted to accommodate social distancing rules and working from home during the COVID-19 restrictions. Digital divide, risk and safety management, acceptability of remote data collection and practical considerations are described. The adaptions to methods have practical implications for researchers looking for more flexible approaches in response to continuing restrictions resulting from COVID-19, and the authors believe that others could adopt such an approach. The need for a further acceptability study focusing on human and economic costs and benefits of telephone and video as an alternative to face-to-face data collection is indicated. TRIALS REGISTRATION: Refugee Emergency - Defining and Implementing Novel Evidence-based psychosocial interventions RE-DEFINE. (Trials registration numbers NCT03571347 , NCT03587896 ) https://doi.org/10.1136/bmjopen-2019-030259 (2019).


Asunto(s)
/complicaciones , Recolección de Datos/métodos , Pandemias , Cuarentena/psicología , Refugiados/psicología , Árabes/psicología , /etnología , /virología , Estudios de Seguimiento , Encuestas Epidemiológicas , Humanos , Gestión de Riesgos , Teléfono , Reino Unido/epidemiología
7.
Rheumatol Int ; 41(4): 707-714, 2021 04.
Artículo en Inglés | MEDLINE | ID: mdl-33559727

RESUMEN

OBJECTIVES: We sought to gain insight into the prevalence of COVID-19 and the impact stringent social distancing (shielding) has had on a large cohort of rheumatology (RD) follow-up patients from a single large UK centre. METHODS: We linked COVID-19-related deaths, screening and infection rates to our RD population (1.2.20-1.5.20) and audited active rheumatology follow-up patients through survey data communicated via a linked mobile phone SMS message. We assessed epidemiology, effect of stringent social distancing (shielding) and quality of life (HRQoL) by Short Form 12 (SF12). RESULTS: There were 10,387 active follow-up patients, 7911 had linked mobile numbers. 12/10,387 RD patients died from COVID-19 (0.12%); local population 4131/7,415,149 (0.12%). For patients with mobile phones, 1693/7911 (21%) responded and of these, 1605 completed the SF12. Inflammatory arthritis predominated 1174/1693 (69%); 792/1693 (47%) were shielding. Advice on shielding/distancing was followed by 1372/1693(81%). 61/1693 (4%) reported COVID-19 (24/61 shielding); medication distribution was similar in COVID and non-COVID patients. Mental SF12 (MCS) but not physical (PCS) component scores were lower in COVID (60) vs. non-COVID (1545), mean differences: MCS, - 3.3; 95% CI - 5.2 to - 1.4, P < 0.001; PCS, - 0.4; 95% CI, - 2.1 to 1.3). In 1545 COVID-negative patients, those shielding had lower MCS (- 2.1; 95% CI - 2.8 to - 1.4) and PCS (- 3.1, 95% CI - 3.7 to - 2.5), both P < 0.001. CONCLUSIONS: Our full RD cohort had no excess of COVID deaths compared to the general local population. Our survey data suggest that shielding adversely affects both mental and physical health in RD. These data broaden our understanding of shielding, indicating need for further study.


Asunto(s)
/epidemiología , Recolección de Datos/métodos , Reumatología , Anciano , /prevención & control , Femenino , Humanos , Masculino , Persona de Mediana Edad , Prevalencia
8.
J Med Internet Res ; 23(2): e25118, 2021 02 10.
Artículo en Inglés | MEDLINE | ID: mdl-33481754

RESUMEN

BACKGROUND: The World Health Organization has recognized the importance of assessing population-level mental health during the COVID-19 pandemic. During a global crisis such as the COVID-19 pandemic, a timely surveillance method is urgently needed to track the impact on public mental health. OBJECTIVE: This brief systematic review focused on the efficiency and quality of data collection of studies conducted during the COVID-19 pandemic. METHODS: We searched the PubMed database using the following search strings: ((COVID-19) OR (SARS-CoV-2)) AND ((Mental health) OR (psychological) OR (psychiatry)). We screened the titles, abstracts, and texts of the published papers to exclude irrelevant studies. We used the Newcastle-Ottawa Scale to evaluate the quality of each research paper. RESULTS: Our search yielded 37 relevant mental health surveys of the general public that were conducted during the COVID-19 pandemic, as of July 10, 2020. All these public mental health surveys were cross-sectional in design, and the journals efficiently made these articles available online in an average of 18.7 (range 1-64) days from the date they were received. The average duration of recruitment periods was 9.2 (range 2-35) days, and the average sample size was 5137 (range 100-56,679). However, 73% (27/37) of the selected studies had Newcastle-Ottawa Scale scores of <3 points, which suggests that these studies are of very low quality for inclusion in a meta-analysis. CONCLUSIONS: The studies examined in this systematic review used an efficient data collection method, but there was a high risk of bias, in general, among the existing public mental health surveys. Therefore, following recommendations to avoid selection bias, or employing novel methodologies considering both a longitudinal design and high temporal resolution, would help provide a strong basis for the formation of national mental health policies.


Asunto(s)
Recolección de Datos/normas , Encuestas Epidemiológicas/normas , Salud Mental , Estudios Transversales , Recolección de Datos/métodos , Humanos , Pandemias
12.
JCO Clin Cancer Inform ; 5: 24-29, 2021 01.
Artículo en Inglés | MEDLINE | ID: mdl-33411623

RESUMEN

Cancer surveillance is a field focused on collection of data to evaluate the burden of cancer and apply public health strategies to prevent and control cancer in the community. A key challenge facing the cancer surveillance community is the number of manual tasks required to collect cancer surveillance data, thereby resulting in possible delays in analysis and use of the information. To modernize and automate cancer data collection and reporting, the Centers for Disease Control and Prevention is planning, developing, and piloting a cancer surveillance cloud-based computing platform (CS-CBCP) with standardized electronic reporting from laboratories and health-care providers. With this system, automation of the cancer case collection process and access to real-time cancer case data can be achieved, which could not be done before. Furthermore, the COVID-19 pandemic has illustrated the importance of continuity of operations plans, and the CS-CBCP has the potential to provide such a platform suitable for remote operations of central cancer registries.


Asunto(s)
Nube Computacional , Recolección de Datos/métodos , Manejo de Datos/métodos , Neoplasias/epidemiología , Automatización , Centers for Disease Control and Prevention, U.S. , Sistemas de Computación , Monitoreo Epidemiológico , Política de Salud , Humanos , Sistema de Registros , Estados Unidos
13.
BMJ Glob Health ; 6(1)2021 01.
Artículo en Inglés | MEDLINE | ID: mdl-33419929

RESUMEN

In-person interactions have traditionally been the gold standard for qualitative data collection. The COVID-19 pandemic required researchers to consider if remote data collection can meet research objectives, while retaining the same level of data quality and participant protections. We use four case studies from the Philippines, Zambia, India and Uganda to assess the challenges and opportunities of remote data collection during COVID-19. We present lessons learned that may inform practice in similar settings, as well as reflections for the field of qualitative inquiry in the post-COVID-19 era. Key challenges and strategies to overcome them included the need for adapted researcher training in the use of technologies and consent procedures, preparation for abbreviated interviews due to connectivity concerns, and the adoption of regular researcher debriefings. Participant outreach to allay suspicions ranged from communicating study information through multiple channels to highlighting associations with local institutions to boost credibility. Interviews were largely successful, and contained a meaningful level of depth, nuance and conviction that allowed teams to meet study objectives. Rapport still benefitted from conventional interviewer skills, including attentiveness and fluency with interview guides. While differently abled populations may encounter different barriers, the included case studies, which varied in geography and aims, all experienced more rapid recruitment and robust enrollment. Reduced in-person travel lowered interview costs and increased participation among groups who may not have otherwise attended. In our view, remote data collection is not a replacement for in-person endeavours, but a highly beneficial complement. It may increase accessibility and equity in participant contributions and lower costs, while maintaining rich data collection in multiple study target populations and settings.


Asunto(s)
Recolección de Datos , Relaciones Interpersonales , África del Sur del Sahara , Exactitud de los Datos , Recolección de Datos/métodos , Recolección de Datos/normas , Humanos , India , Internet , Pandemias , Filipinas , Investigación Cualitativa
14.
Methods Mol Biol ; 2190: 317-336, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-32804374

RESUMEN

Recently, digitization of biomedical processes has accelerated, in no small part due to the use of machine learning techniques which require large amounts of labeled data. This chapter focuses on the prerequisite steps to the training of any algorithm: data collection and labeling. In particular, we tackle how data collection can be set up with scalability and security to avoid costly and delaying bottlenecks. Unprecedented amounts of data are now available to companies and academics, but digital tools in the biomedical field encounter a problem of scale, since high-throughput workflows such as high content imaging and sequencing can create several terabytes per day. Consequently data transport, aggregation, and processing is challenging.A second challenge is maintenance of data security. Biomedical data can be personally identifiable, may constitute important trade-secrets, and be expensive to produce. Furthermore, human biomedical data is often immutable, as is the case with genetic information. These factors make securing this type of data imperative and urgent. Here we address best practices to achieve security, with a focus on practicality and scalability. We also address the challenge of obtaining usable, rich metadata from the collected data, which is a major challenge in the biomedical field because of the use of fragmented and proprietary formats. We detail tools and strategies for extracting metadata from biomedical scientific file formats and how this underutilized metadata plays a key role in creating labeled data for use in the training of neural networks.


Asunto(s)
Investigación Biomédica/métodos , Recolección de Datos/métodos , Algoritmos , Seguridad Computacional , Aprendizaje Automático , Redes Neurales de la Computación , Flujo de Trabajo
15.
Rev Paul Pediatr ; 39: e2020267, 2020.
Artículo en Inglés, Portugués | MEDLINE | ID: mdl-33146295

RESUMEN

OBJECTIVE: Social isolation is currently identified as the best way to prevent the infection by the new coronavirus. However, for some social groups, such as children and adolescents, this measure carries a contradiction: the home, which should be the safest place for them, is also a frequent environment of a sad aggravation: domestic violence. This study aims to evaluate the notifications of interpersonal/self-inflicted violence available in the Information System for Notifiable Diseases in the State of Santa Catarina (southern Brazil), for the juvenile age group, before and during the new coronavirus pandemics. METHODS: Cross-sectional, descriptive study of violence against children and adolescents (from 0 to 19 years) notified by health professionals by completing and entering the occurrence in the Information System for Notifiable Diseases of the State of Santa Catarina in 11 weeks in which the social isolation measure was instituted as mandatory, comparing with the same period before this measure. RESULTS: During the study period, 136 municipalities in Santa Catarina made 1,851 notifications. There was a decrease of 55.3% of them in the isolation period, and the difficulties encountered in seeking protection and assistance institutions were listed. CONCLUSIONS: The society needs to be aware of possible cases of violence in the children and adolescent population. It is important to provide accessible, effective, and safe ways for complaints and notifications, as well as a quick response to the cases, aiming at protecting victims and minimizing damages to prevent the perpetuation of the violence.


Asunto(s)
Maltrato a los Niños , Bienestar del Niño , Infecciones por Coronavirus/epidemiología , Violencia Doméstica , Neumonía Viral/epidemiología , Adolescente , Salud del Adolescente/tendencias , Betacoronavirus , Brasil/epidemiología , Niño , Maltrato a los Niños/prevención & control , Maltrato a los Niños/estadística & datos numéricos , Salud del Niño/tendencias , Estudios Transversales , Recolección de Datos/métodos , Recolección de Datos/estadística & datos numéricos , Violencia Doméstica/prevención & control , Violencia Doméstica/tendencias , Femenino , Humanos , Masculino , Evaluación de Necesidades , Pandemias
16.
PLoS One ; 15(11): e0241466, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33147252

RESUMEN

As the number of global coronavirus disease (COVID-19) cases increases, the number of imported cases is gradually rising. Furthermore, there is no reduction in domestic outbreaks. To assess the risks from imported COVID-19 cases in South Korea, we suggest using the daily risk score. Confirmed COVID-19 cases reported by John Hopkins University Center, roaming data collected from Korea Telecom, and the Oxford COVID-19 Government Response Tracker index were included in calculating the risk score. The risk score was highly correlated with imported COVID-19 cases after 12 days. To forecast daily imported COVID-19 cases after 12 days in South Korea, we developed prediction models using simple linear regression and autoregressive integrated moving average, including exogenous variables (ARIMAX). In the validation set, the root mean squared error of the linear regression model using the risk score was 6.2, which was lower than that of the autoregressive integrated moving average (ARIMA; 22.3) without the risk score as a reference. Correlation coefficient of ARIMAX using the risk score (0.925) was higher than that of ARIMA (0.899). A possible reason for this time lag of 12 days between imported cases and the risk score could be the delay that occurs before the effect of government policies such as closure of airports or lockdown of cities. Roaming data could help warn roaming users regarding their COVID-19 risk status and inform the national health agency of possible high-risk areas for domestic outbreaks.


Asunto(s)
Teléfono Celular , Infecciones por Coronavirus/epidemiología , Predicción/métodos , Pandemias , Neumonía Viral/epidemiología , Análisis de Datos , Recolección de Datos/métodos , Brotes de Enfermedades/prevención & control , Humanos , Modelos Lineales , Modelos Estadísticos , República de Corea/epidemiología , Riesgo
17.
Biomedica ; 40(Supl. 2): 96-103, 2020 10 30.
Artículo en Inglés, Español | MEDLINE | ID: mdl-33152193

RESUMEN

Introduction: The COVID pandemic is a challenge for public health surveillance and an opportunity to assess its strengths and weaknesses to improve the response. Objective: To evaluate the performance of the Colombian public health surveillance system during the first 50 days of the COVID-19 pandemic in the country. Materials and methods: We analyzed the data published between March 6 and April 24, 2020, by the Instituto Nacional de Salud and the World Health Organization (WHO). We evaluated: i) the quality of the data according to the fulfillment of Benford's law, and ii) the timeliness of the information measured as the difference in dates between the data generated by the Instituto Nacional de Salud and WHO's situational reports. We assessed the fulfillment of Benford's law using the p values of the log-likelihood ratio, the chi square or Moreno's exact tests. Results: Until April 24 there were 4,881 cases of COVID-19 in Colombia. During most of the first 50 days of the pandemic, Benford's law was fulfilled except the first days of the epidemic. The difference between Instituto Nacional de Salud and WHO reports largely depends on the different reporting times. Conclusion: In general, the Colombian public health surveillance system fulfilled Benford's law suggesting that there was quality in the data. Future studies comparing the performance of the departments and districts will improve the diagnosis of the Colombian surveillance system.


Asunto(s)
Betacoronavirus , Infecciones por Coronavirus/epidemiología , Recolección de Datos/normas , Pandemias , Neumonía Viral/epidemiología , Vigilancia de la Población , Salud Pública , Colombia/epidemiología , Recolección de Datos/métodos , Recolección de Datos/estadística & datos numéricos , Brotes de Enfermedades , Humanos , Subtipo H1N1 del Virus de la Influenza A , Gripe Humana/epidemiología , Internet , Vigilancia de la Población/métodos , Control de Calidad , Distribuciones Estadísticas , Infección por el Virus Zika/epidemiología
19.
Zhonghua Liu Xing Bing Xue Za Zhi ; 41(9): 1542-1549, 2020 Sep 10.
Artículo en Chino | MEDLINE | ID: mdl-33076615

RESUMEN

Cohort study is one of the basic methods used in epidemiological research. With the development of the etiological analysis of complex diseases such as cardiovascular diseases, large natural population-based cohort study has become a popular topic in medical research. In the process of cohort development, one of the important issues is to ensure the efficiency and safety on data collection. As a database management system, with open source, free clinical research data collection and high quality, REDCap can widely be applied in large population-based cohort studies. This article summarizes the baseline survey and follow-up procedures on cohort studies and introduces a REDCap-system-based solution for data collection and management. Contents on the establishment of data working groups, data collection, cohort follow-up methods and field application are also discussed in this paper, in order to improve the efficiency of data collection and management in cohort study to help the development of cohort study in China.


Asunto(s)
Estudios de Cohortes , Recolección de Datos , China/epidemiología , Recolección de Datos/métodos , Humanos , Proyectos de Investigación
20.
Gac. sanit. (Barc., Ed. impr.) ; 34(5): 518-520, sept.-oct. 2020. tab
Artículo en Español | IBECS | ID: ibc-198876

RESUMEN

El uso de estudios basados en encuestas online se ha extendido de manera notable. A pesar de tener tasas de respuesta especialmente pequeñas, permiten obtener con facilidad un gran tamaño de muestra. Sin embargo, esta estrategia puede conllevar un sesgo de selección que comprometa notablemente los resultados. Se comparan los resultados de dos encuestas sobre la regulación de la eutanasia y el suicidio asistido, una online con muestra autoseleccionada y la otra con muestreo aleatorio, realizadas en 2018 entre los/las colegiados/as del Colegio de Médicos de Bizkaia. Las tasas de respuesta fueron del 10,4% (encuesta online) y del 87,8% (encuesta aleatoria). No se encontraron diferencias en las características sociodemográficas, aunque sí en las de opinión, de manera que el porcentaje de personas contrarias a la regulación de la eutanasia estaba sobrestimado. Los resultados de este estudio muestran que dicha estrategia de muestreo genera sesgos en los resultados, alguno de ellos difícilmente detectable y reparable


The use of studies based on online surveys has expanded significantly. Despite having particularly small response rates, they allow a large sample size to be easily obtained. However, this strategy may entail a selection bias that significantly compromises the results. The results of two surveys on the regulation of euthanasia and assisted suicide are compared. One is an online survey with a self-selected sample and the other a survey with random sampling, conducted in 2018 among the members of the Medical Association of Bizkaia. The response rates were 10.4% (online survey) and 87.8% (random survey). No differences were found in sociodemographic characteristics, although there were differences in the opinion variables, so that the percentage of people who opposed euthanasia regulation was overestimated. The results of this study show that this sampling strategy generates biases in the results, some of which are difficult both to detect and to repair


Asunto(s)
Humanos , Encuestas y Cuestionarios/clasificación , Suicidio Asistido/estadística & datos numéricos , Eutanasia/estadística & datos numéricos , Acceso a Internet/estadística & datos numéricos , Sesgo de Selección , Tamaño de la Muestra , Recolección de Datos/métodos , Reproducibilidad de los Resultados
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