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BACKGROUND: This study investigated fundamental demographic variables within the Taiwan Biobank (TWBB) and compared them with national demographic statistics. Additionally, a matched cohort analysis compared TWBB participants with nonparticipants to uncover disparities in sociodemographic and clinical characteristics. METHODS: A total of 128,663 individuals aged 30 to 70 without cancer were recruited within the TWBB, and 514,652 nonparticipants matched by age and sex were randomly selected from the National Health Insurance claims database. Sociodemographic variables, healthcare utilization metrics, underlying medical conditions, and subsequent mortality and cancer risk were analyzed. RESULTS: TWBB participants were more likely to be female, older, married, higher educated, with higher incomes, and urban residency. Healthcare utilization metrics showed minimal differences. Pre-cohort entry, TWBB participants had a higher prevalence of certain medical conditions, such as peptic ulcer disease, osteoarthritis, osteoporosis, and uterine leiomyoma in females. During follow-up periods, elevated mortality rates were observed among TWBB participants but decreased cancer risk. CONCLUSION: The TWBB cohort exhibits disparities in sociodemographic and health-related attributes compared to the general population, comprising older, females, married, higher educated, higher income, and predominantly in urban areas. While mortality rates are slightly elevated within the TWBB cohort, cancer incidence rates are lower. Despite limitations in representativeness, the TWBB's size and exposure measures offer valuable insights into associations between exposures and health conditions.
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PURPOSE: The Journal of Neuro-Oncology (JNO), established in 1983, plays a key role in publishing research on brain and spinal cord tumors. This study examines JNO's publication trends, focusing on country and gender representation to highlight its global impact. METHODS: Statistical analyses were conducted using R. Gender of the first authors was predicted using a gender-guesser, and author affiliations were used to determine publication countries. We introduced a novel Country-Related Diversity (CRD) index to assess the JNO's representativeness, comparing a country's JNO publications to its overall neurosurgical output. An index value of 1 indicates proportional representation. RESULTS: The JNO corpus, spanning from 1983 to 2024, comprises 8,154 documents with an average document age of 14.4 years. The average citation count per document is 28.71, with a rate of 2.16 citations per document per year. JNO's scientific output has grown significantly, peaking at 397 articles in 2011, with a long-term annual growth rate of 3.7%. The keyword analysis highlights "glioblastoma" as the most frequent term, reflecting the journal's neuro-oncological focus. Geographically, the U.S. led with 2,535 articles (40.1%), followed by China and Germany. International collaboration rose steadily, with multi-country publications increasing from 4.76% in 1983 to 20.98% in 2024. Analyzing contributions from different countries showed a converging CRD index toward 1 (P < 0.01), with U.S. and non-U.S. countries trending similarly. Upper-middle-income countries displayed fluctuating CRD patterns, whereas lower-middle-income countries lagged behind. Authorship analysis showed an increasing trend in co-authorship (P < 0.01), with the average number of authors per paper reaching 10.4 by 2024. Gender representation revealed a growing number of female first and senior authors, although males still dominate. By 2024, 32.9% of first authors and 21.6% of senior authors were female, signaling a gradual trend toward gender parity (P < 0.01). CONCLUSIONS: The CRD index offers a standardized measure of country-specific research representation in the JNO. The convergence towards 1 reflects balanced international representation. JNO publication also reflects a trend toward gender equity, with a notable rise in female first authors, enhancing global research inclusivity.
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The ruminant microbiome plays a key role in the health, feed utilization and environmental impact of ruminant production systems. Microbiome research provides insights to reduce the environmental footprint and improve meat and milk production from ruminants. However, the microbiome composition depends on the ruminant species, habitat and diet, highlighting the importance of having a good representation of ruminant microbiomes in their local environment to translate research findings into beneficial approaches. This information is currently lacking. In this study, we examined the metadata of farmed ruminant microbiome studies to determine global representativeness and summarized information by ruminant species, geographic location, body site, and host information. We accessed data from the International Nucleotide Sequence Database Collaboration via the National Center for Biotechnology Information database. We retrieved 47,628 sample metadata, with cattle accounting for more than two-thirds of the samples. In contrast, goats, which have a similar global population to cattle, were underrepresented with less than 4% of the total samples. Most samples originated in Western Europe, North America, Australasia and China but countries with large ruminant populations in South America, Africa, Asia, and Eastern Europe were underrepresented. Microbiomes from the gastrointestinal tract were the most frequently studied, comprising about 87% of all samples. Additionally, the number of samples from other body sites such as the respiratory tract, milk, skin, reproductive tract, and fetal tissue, has markedly increased over the past decade. More than 40% of the samples lacked basic information and many were retrieved from generic taxonomic classifications where the ruminant species was manually recovered. The lack of basic information such as age, breed or sex can limit the reusability of the data for further analysis and follow-up studies. This requires correct taxonomic assignment of the ruminant host and basic metadata information using accepted ontologies adapted to host-associated microbiomes. Repositories should require this information as a condition of acceptance. The results of this survey highlight the need to encourage studies of the ruminant microbiome from underrepresented ruminant species and countries worldwide. This shortfall in information poses a challenge for the development of microbiome-based strategies to meet sustainability requirements, particularly in areas with expanding livestock production systems.
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In recent years, deep learning has gained popularity for its ability to solve complex classification tasks. It provides increasingly better results thanks to the development of more accurate models, the availability of huge volumes of data and the improved computational capabilities of modern computers. However, these improvements in performance also bring efficiency problems, related to the storage of datasets and models, and to the waste of energy and time involved in both the training and inference processes. In this context, data reduction can help reduce energy consumption when training a deep learning model. In this paper, we present up to eight different methods to reduce the size of a tabular training dataset, and we develop a Python package to apply them. We also introduce a representativeness metric based on topology to measure the similarity between the reduced datasets and the full training dataset. Additionally, we develop a methodology to apply these data reduction methods to image datasets for object detection tasks. Finally, we experimentally compare how these data reduction methods affect the representativeness of the reduced dataset, the energy consumption and the predictive performance of the model.
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The design of a representative surface water quality monitoring network is vital for accurately capturing the dynamics of water bodies and variability in pollution across a catchment. The representativeness of a surface water monitoring network refers to how well it reflects the characteristics of all monitored surface water bodies. In this study, using a micro-watershed-based approach, a Geographic Information System (GIS) tool (Surface Water Quality Monitoring Point Locations ANalysis (SWQM_PLAN)) has been developed to optimize the design of surface water quality monitoring networks. In the first stage of the two-stage study, a digital elevation model and minimum watershed area size were taken as input parameters and micro-watersheds with defined upstream-downstream relations were created. In the second stage, input parameters including land use data, pollution sources, and micro-watershed data, along with specific criteria, were used to identify the basins and determine the optimal locations for surface water monitoring stations. The developed GIS tool was then applied to evaluate the existing surface water monitoring network in the Gediz River Basin, designed by the Republic of Türkiye, Ministry of Agriculture and Forestry. The tool assessed the effectiveness if the existing monitoring network in terms of assessing agricultural pollution and provided potential revision suggestions to enhance the effectiveness of implemented pollution reduction measures.
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Monitoramento Ambiental , Sistemas de Informação Geográfica , Rios , Qualidade da Água , Monitoramento Ambiental/métodos , Rios/química , Poluentes Químicos da Água/análise , Agricultura/métodos , TurquiaRESUMO
BACKGROUND: The representativeness of cohort studies compared to nationwide data is a major concern. This study evaluated the similarity and seasonality of causative respiratory viruses for chronic obstructive pulmonary disease (COPD) and asthma exacerbations between retrospective multicenter cohort study and nationwide data. METHODS: We compared data from the retrospective multicenter cohort study with Korean Influenza and Respiratory Surveillance System data between 2015 and 2018. Correlation, dynamic time warping (DTW), and seasonal autoregressive integrated moving average (SARIMA) analyses were performed. RESULTS: Spearman correlation coefficients [ρ] indicated very strong (respiratory syncytial virus [RSV] [ρ = 0.8458] and influenza virus [IFV] [ρ = 0.8272]), strong (human metapneumovirus [HMPV] [ρ = 0.7177] and parainfluenza virus [PIV] [ρ = 0.6742]), and moderate (rhinovirus [RV] [ρ = 0.5850] and human coronavirus [HCoV] [ρ = 0.5158]) correlations. DTW analyses showed moderate (PIV) and high (IFV, RSV, and HMPV) synchronicity between the two datasets, while RV and HCoV showed low synchronicity. SARIMA analyses revealed 12-month seasonality for IFV, RSV, PIV, and HMPV. The peak season was winter for RSV and IFV, spring to summer for PIV, and spring for HMPV. CONCLUSIONS: This was the first study to report the synchronicity between a retrospective multicenter cohort study of viruses that can cause COPD or asthma exacerbations and nationwide surveillance system data.
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Asma , Doença Pulmonar Obstrutiva Crônica , Estações do Ano , Humanos , Doença Pulmonar Obstrutiva Crônica/epidemiologia , Doença Pulmonar Obstrutiva Crônica/virologia , Asma/epidemiologia , Asma/virologia , Estudos Retrospectivos , República da Coreia/epidemiologia , Infecções Respiratórias/virologia , Infecções Respiratórias/epidemiologia , Progressão da Doença , MasculinoRESUMO
Melothria pendula L., a wild relative of cucurbit crops, is also used for food and as a medicinal plant in Mexico. The objective of this study was to ecogeographically characterize the known populations of M. pendula in Mexico, determining its adaptive range and possible sites for in situ and ex situ conservation. To achieve this goal, we compiled a dataset of 1270 occurrences of M. pendula from herbarium and botanical databases and individual observations. Adaptive scenarios were generated through the development of an ecogeographic land characterization (ELC) map, preceded by the identification of abiotic variables influencing the species' distribution. Eleven bioclimatic, edaphic, and geophysical variables were found to be important for the species' distribution. The ELC map obtained contained 21 ecogeographic categories, with 14 exhibiting the presence of M. pendula. By analyzing ecogeographic representativeness, 111 sites of high interest were selected for the efficient collection of M. pendula in Mexico. Eight high-priority hotspots for future in situ conservation of M. pendula were also identified based on their high ecogeographic diversity, with only three of these hotspots located within protected natural areas. In this study, ecogeographic approaches show their potential utility in conservation prioritization when genetic data are scarce, a very common condition in crop wild relatives.
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Recent approvals of amyloid immunotherapy drugs for early Alzheimer's disease (AD) have been highly controversial. In this piece, we consider challenges from the clinical, population health, and health systems perspectives to the role that the new AD drugs might be expected to play, now and in the future, in alleviating the morbidity caused by AD in the population. Clinically, short-term effects are small, adverse events are frequent, treatment regimens are burdensome, and, crucially, long-term effects are unknown. At a population level, there is always likely to be a trade-off between breadth of access and magnitude of benefit for any given individual. At a health system level, roll out of treatment even for only narrowly-defined patient groups will involve considerable resources to identify and treat eligible patients, with profound opportunity costs. Our considered view on current evidence is that there are challenges from each perspective to imagining a foreseeable future in which amyloid immunotherapy significantly alleviates AD morbidity at scale. HIGHLIGHTS: Recent approvals of Alzheimer's drugs have met with excitement but also controversy. Trial effects are small, adverse effects concerning, and long-term effects unknown. Results from trial cohorts may not generalize to broader, more complex patients. Significant resource requirements of eligibility assessment and drug administration. Use in "presymptomatic" populations is not supported by current evidence.
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Doença de Alzheimer , Imunoterapia , Humanos , Doença de Alzheimer/tratamento farmacológico , Aprovação de DrogasRESUMO
Anticipation is key to performance in many sports. By definition, anticipation as a perceptual-cognitive process is meant to inform action and help athletes reduce potential motor costs under spatiotemporal pressure. Anticipation research has repeatedly been criticized for neglecting action and raised the need for predominant testing under conditions of perception-action coupling (PAC). To the best of our knowledge, however, there is a lack of explicit criteria to characterize and define PAC conditions. This can lead to blurred terminology and may complicate interpretation and comparability of PAC conditions and results across studies. Here, we make a first proposal for a 7-level classification of PAC conditions with the defining dimensions of stimulus presentation and response mode. We hope this classification may constitute a helpful orientation for study planning and reporting in research on anticipation. Further, we illustrate the potential utilization of the PAC classification as a template for experimental protocol analysis in a review on anticipation in racket sports. Analysis of N = 115 studies reported in N = 91 articles confirms an underrepresentation of representative PAC conditions and reveals little change in PAC approaches over more than 40 years of research in that domain. We discuss potential reasons for these findings, the benefits of adopting the proposed PAC classification and reiterate the call for more action in anticipation research.
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Wastewater-based surveillance (WBS) has become a widespread method to monitor transmission of SARS-CoV-2 and other human pathogens in Europe. We conducted a survey about WBS systems' objectives, approaches, representativeness and usefulness in 10 invited European countries in 2023, i.e. Austria, Belgium, Denmark, Finland, Greece, Hungary, Italy, Luxembourg, the Netherlands and Norway. All countries completed the study questionnaire about their SARS-CoV-2 WBS systems, and shared information about WBS of other pathogens as deemed relevant. SARS-CoV-2 WBS systems primarily monitored national and subnational trends (population coverage: 25-99%), and a majority (8/10) also tracked variant distribution. Nine of 10 countries reported that their SARS-CoV-2 WBS systems were representative of their population and all countries remarked that the findings were valuable for public health decision-making. Results were shared with relevant public health authorities and published via dedicated websites and/or dashboards. WBS systems of other pathogens were mostly in the early stages, with some countries implementing pilots. Notable exceptions were the well-established poliovirus surveillance systems in Finland, Italy and the Netherlands. This study brings understanding the diverse landscape of WBS in Europe, offering insights for future developments and collaborations. Furthermore, it highlights the need for further integration of WBS into other European surveillance systems.
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COVID-19 , SARS-CoV-2 , Águas Residuárias , Humanos , Europa (Continente)/epidemiologia , COVID-19/epidemiologia , COVID-19/transmissão , Inquéritos e Questionários , Águas Residuárias/virologia , Pandemias , Vigilância Epidemiológica Baseada em Águas Residuárias , Vigilância da População/métodos , Pneumonia Viral/epidemiologia , Saúde Pública , Infecções por Coronavirus/epidemiologia , BetacoronavirusRESUMO
BACKGROUND: Single amplified genomes (SAGs) and metagenome-assembled genomes (MAGs) are the predominant sources of information about the coding potential of uncultured microbial lineages, but their strengths and limitations remain poorly understood. Here, we performed a direct comparison of two previously published collections of thousands of SAGs and MAGs obtained from the same, global environment. RESULTS: We found that SAGs were less prone to chimerism and more accurately reflected the relative abundance and the pangenome content of microbial lineages inhabiting the epipelagic of the tropical and subtropical ocean, as compared to MAGs. SAGs were also better suited to link genome information with taxa discovered through 16S rRNA amplicon analyses. Meanwhile, MAGs had the advantage of more readily recovering genomes of rare lineages. CONCLUSIONS: Our analyses revealed the relative strengths and weaknesses of the two most commonly used genome recovery approaches in environmental microbiology. These considerations, as well as the need for better tools for genome quality assessment, should be taken into account when designing studies and interpreting data that involve SAGs or MAGs. Video Abstract.
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Bactérias , Metagenoma , Plâncton , RNA Ribossômico 16S , RNA Ribossômico 16S/genética , Bactérias/genética , Bactérias/classificação , Plâncton/genética , Plâncton/classificação , Plâncton/microbiologia , Filogenia , Água do Mar/microbiologia , Quimerismo , Genoma Bacteriano , Metagenômica/métodos , Microbiota/genética , GenômicaRESUMO
Background: South Korea has implemented a hand, foot, and mouth disease (HFMD) surveillance system since 2009 to monitor incidence trends and identify disease burden. This nationwide surveillance involves a network of approximately 100 pediatric clinics that report all probable and confirmed HFMD cases. Following the COVID-19 pandemic, infectious disease surveillance systems must be evaluated to ensure the effective use of limited public health resources. Objective: This study aimed to evaluate the HFMD sentinel surveillance system in South Korea from 2017 to 2022, focusing on the transition period after the COVID-19 pandemic. Methods: We retrospectively reviewed the HFMD sentinel surveillance system from the Korea Disease Control and Prevention Agency using systematic guidelines for public health surveillance system evaluation developed by the US Centers for Disease Control and Prevention. We assessed the system's overall performance in 5 main factors: timeliness, stability, completeness, sensitivity, and representativeness (ie, the age and geographic distribution of sentinels). We rated these factors as weak, moderate, or good. Results: Our study showed that the completeness, sensitivity, and age representativeness of the HFMD surveillance performance were temporarily reduced to moderate levels from 2020 to 2021 and recovered in 2022, while the timeliness and geographic representativeness were maintained at a good level throughout the study period. The stability of the surveillance was moderate from 2017 to 2021 and weak in 2022. Conclusions: This is the first study to evaluate the HFMD surveillance system after the acute phase of the COVID-19 pandemic. We identified a temporarily reduced level of performance (ie, completeness, sensitivity, and age-specific representativeness) during the acute phase of the pandemic and good performance in 2022. Surveillance system evaluation and maintenance during public health emergencies will provide robust and reliable data to support public health policy development. Regular staff training programs and reducing staff turnover will improve HFMD surveillance system stability.
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Doença de Mão, Pé e Boca , Vigilância de Evento Sentinela , Humanos , Doença de Mão, Pé e Boca/epidemiologia , Estudos Retrospectivos , República da Coreia/epidemiologia , Pré-Escolar , Lactente , Criança , COVID-19/epidemiologia , COVID-19/prevenção & controle , Recém-NascidoRESUMO
BACKGROUND: Studies confirm that significant biases exist in online recommendation platforms, exacerbating pre-existing disparities and leading to less-than-optimal outcomes for underrepresented demographics. We study issues of bias in inclusion and representativeness in the context of healthcare information disseminated via videos on the YouTube social media platform, a widely used online channel for multi-media rich information. With one in three US adults using the Internet to learn about a health concern, it is critical to assess inclusivity and representativeness regarding how health information is disseminated by digital platforms such as YouTube. METHODS: Leveraging methods from fair machine learning (ML), natural language processing and voice and facial recognition methods, we examine inclusivity and representativeness of video content presenters using a large corpus of videos and their metadata on a chronic condition (diabetes) extracted from the YouTube platform. Regression models are used to determine whether presenter demographics impact video popularity, measured by the video's average daily view count. A video that generates a higher view count is considered to be more popular. RESULTS: The voice and facial recognition methods predicted the gender and race of the presenter with reasonable success. Gender is predicted through voice recognition (accuracy = 78%, AUC = 76%), while the gender and race predictions use facial recognition (accuracy = 93%, AUC = 92% and accuracy = 82%, AUC = 80%, respectively). The gender of the presenter is more significant for video views only when the face of the presenter is not visible while videos with male presenters with no face visibility have a positive relationship with view counts. Furthermore, videos with white and male presenters have a positive influence on view counts while videos with female and non - white group have high view counts. CONCLUSION: Presenters' demographics do have an influence on average daily view count of videos viewed on social media platforms as shown by advanced voice and facial recognition algorithms used for assessing inclusion and representativeness of the video content. Future research can explore short videos and those at the channel level because popularity of the channel name and the number of videos associated with that channel do have an influence on view counts.
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Educação em Saúde , Aprendizado de Máquina , Processamento de Linguagem Natural , Mídias Sociais , Humanos , Educação em Saúde/métodos , Masculino , Feminino , Gravação em Vídeo , AdultoRESUMO
BACKGROUND: Recruitment for surveys has been a great challenge, especially in general practice. METHODS: Here, we reported recruitment strategies, data collection, participation rates (PR) and representativeness of the PRICOV-19 study, an international comparative, cross-sectional, online survey among general practices (GP practices) in 37 European countries and Israel. RESULTS: Nine (24%) countries reported a published invitation; 19 (50%) had direct contact with all GPs/GP practices; 19 (50%) contacted a sample of GPs /GP practices; and 7 (18%) used another invitation strategy. The median participation rate was 22% (IQR = 10%, 28%). Multiple invitation strategies (P-value 0.93) and multiple strategies to increase PR (P-value 0.64) were not correlated with the PR. GP practices in (semi-) rural areas, GP practices serving more than 10,000 patients, and group practices were over-represented (P-value < 0.001). There was no significant correlation between the PR and strength of the primary care (PC) system [Spearman's r 0.13, 95% CI (-0.24, 0.46); P-value 0.49]; the COVID-19 morbidity [Spearman's r 0.19, 95% CI (-0.14, 0.49); P-value 0.24], or COVID-19 mortality [Spearman's r 0.19, 95% CI (-0.02, 0.58); P-value 0.06] during the three months before country-specific study commencement. CONCLUSION: Our main contribution here was to describe the survey recruitment and representativeness of PRICOV-19, an important and novel study.
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COVID-19 , Seleção de Pacientes , Humanos , Estudos Transversais , COVID-19/epidemiologia , Europa (Continente)/epidemiologia , Israel/epidemiologia , Medicina Geral/estatística & dados numéricos , SARS-CoV-2 , Inquéritos e Questionários , Coleta de Dados/métodosRESUMO
BACKGROUND: In recent years, a range of novel smartphone-derived data streams about human mobility have become available on a near-real-time basis. These data have been used, for example, to perform traffic forecasting and epidemic modeling. During the COVID-19 pandemic in particular, human travel behavior has been considered a key component of epidemiological modeling to provide more reliable estimates about the volumes of the pandemic's importation and transmission routes, or to identify hot spots. However, nearly universally in the literature, the representativeness of these data, how they relate to the underlying real-world human mobility, has been overlooked. This disconnect between data and reality is especially relevant in the case of socially disadvantaged minorities. OBJECTIVE: The objective of this study is to illustrate the nonrepresentativeness of data on human mobility and the impact of this nonrepresentativeness on modeling dynamics of the epidemic. This study systematically evaluates how real-world travel flows differ from census-based estimations, especially in the case of socially disadvantaged minorities, such as older adults and women, and further measures biases introduced by this difference in epidemiological studies. METHODS: To understand the demographic composition of population movements, a nationwide mobility data set from 318 million mobile phone users in China from January 1 to February 29, 2020, was curated. Specifically, we quantified the disparity in the population composition between actual migrations and resident composition according to census data, and shows how this nonrepresentativeness impacts epidemiological modeling by constructing an age-structured SEIR (Susceptible-Exposed-Infected- Recovered) model of COVID-19 transmission. RESULTS: We found a significant difference in the demographic composition between those who travel and the overall population. In the population flows, 59% (n=20,067,526) of travelers are young and 36% (n=12,210,565) of them are middle-aged (P<.001), which is completely different from the overall adult population composition of China (where 36% of individuals are young and 40% of them are middle-aged). This difference would introduce a striking bias in epidemiological studies: the estimation of maximum daily infections differs nearly 3 times, and the peak time has a large gap of 46 days. CONCLUSIONS: The difference between actual migrations and resident composition strongly impacts outcomes of epidemiological forecasts, which typically assume that flows represent underlying demographics. Our findings imply that it is necessary to measure and quantify the inherent biases related to nonrepresentativeness for accurate epidemiological surveillance and forecasting.
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BACKGROUND: Findings from studies assessing Long Covid in children and young people (CYP) need to be assessed in light of their methodological limitations. For example, if non-response and/or attrition over time systematically differ by sub-groups of CYP, findings could be biased and any generalisation limited. The present study aimed to (i) construct survey weights for the Children and young people with Long Covid (CLoCk) study, and (ii) apply them to published CLoCk findings showing the prevalence of shortness of breath and tiredness increased over time from baseline to 12-months post-baseline in both SARS-CoV-2 Positive and Negative CYP. METHODS: Logistic regression models were fitted to compute the probability of (i) Responding given envisioned to take part, (ii) Responding timely given responded, and (iii) (Re)infection given timely response. Response, timely response and (re)infection weights were generated as the reciprocal of the corresponding probability, with an overall 'envisioned population' survey weight derived as the product of these weights. Survey weights were trimmed, and an interactive tool developed to re-calibrate target population survey weights to the general population using data from the 2021 UK Census. RESULTS: Flexible survey weights for the CLoCk study were successfully developed. In the illustrative example, re-weighted results (when accounting for selection in response, attrition, and (re)infection) were consistent with published findings. CONCLUSIONS: Flexible survey weights to address potential bias and selection issues were created for and used in the CLoCk study. Previously reported prospective findings from CLoCk are generalisable to the wider population of CYP in England. This study highlights the importance of considering selection into a sample and attrition over time when considering generalisability of findings.
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COVID-19 , SARS-CoV-2 , Humanos , COVID-19/epidemiologia , Criança , Adolescente , Feminino , Masculino , Estudos de Coortes , Inquéritos e Questionários , Reino Unido/epidemiologia , Síndrome de COVID-19 Pós-Aguda , Modelos Logísticos , Pré-Escolar , Prevalência , Adulto JovemRESUMO
In this chapter, we consider lack of racial, ethnic, and geographic diversity in research studies from a public health perspective in which representation of a target population is critical. We review the state of the research field with respect to racial, ethnic, and geographic diversity in study participants. We next focus on key factors which can arise from the lack of diversity and can negatively impact external validity. Finally, we argue that the public's health, and future research, will ultimately be served by approaches from both recruitment and representation science and population neuroscience, and we close with recommendations from these two fields to improve diversity in studies.
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BACKGROUND: Distinctive differences in multiple sclerosis (MS) have been observed by race and ethnicity. We aim to (1) assess how often race and ethnicity were reported in clinical trials registered on ClinicalTrials.gov, (2) evaluate whether the population was diverse enough, and (3) compare with publications. METHODS: We included phase 3 clinical trials registered with results on ClinicalTrials.gov between 2007 and 2023. When race and/or ethnicity were reported, we searched for the corresponding publications. RESULTS: Out of the 99 included studies, 56% reported race and/or ethnicity, of which only 26% of those primarily completed before 2017. Studies reporting race or ethnicity contributed to a total of 33,891 participants, mainly enrolled in Eastern Europe. Most were White (93%), and the median percentage of White participants was 93% (interquartile range (IQR) = 86%-98%), compared to 3% for Black (IQR = 1%-12%) and 0.2% for Asian (IQR = 0%-1%). Four trials omitted race and ethnicity in publications and even when information was reported, some discrepancies in terminology were identified and categories with fewer participants were often collapsed. CONCLUSION: More efforts should be done to improve transparency, accuracy, and representativeness, in publications and at a design phase, by addressing social determinants of health that historically limit the enrollment of underrepresented population.
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Ensaios Clínicos Fase III como Assunto , Esclerose Múltipla , Humanos , Esclerose Múltipla/etnologia , Esclerose Múltipla/terapia , Etnicidade , Grupos RaciaisRESUMO
Kahneman and Tversky showed that when people make probability judgements, they tend to ignore relevant statistical information (e.g., sample size) and instead rely on a representativeness heuristic, whereby subjective probabilities are influenced by the degree to which a target is perceived as similar to (representative of) a typical example of the relevant population, class or category. Their article has become a cornerstone in many lines of research and has been used to account for various biases in judgement and decision-making. Despite the impact this article has had on theory and practice, there have been no direct replications. In a pre-registered experiment (N = 623; Amazon MTurk on CloudResearch), we conducted a replication and extensions of nine problems from Kahneman and Tversky's 1972 article. We successfully replicated eight out of the nine problems. We extended the replication by examining the consistency of heuristic responses across problems and by examining decision style as a predictor of participants' use of the representativeness heuristic. Materials, data, and code are available on: https://osf.io/nhqc4/.