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1.
J Natl Cancer Inst Monogr ; 2024(65): 152-161, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39102885

RESUMEN

BACKGROUND: Disparities in cancer incidence, stage at diagnosis, and mortality persist by race, ethnicity, and many other social determinants, such as census-tract-level socioeconomic status (SES), poverty, and rurality. Census-tract-level measures of these determinants are useful for analyzing trends in cancer disparities. METHODS: The purpose of this paper was to demonstrate the availability of the Surveillance, Epidemiology, and End Results Program's specialized census-tract-level dataset and provide basic descriptive cancer incidence, stage at diagnosis, and survival for 8 cancer sites, which can be screened regularly or associated with infectious agents. We present these analyses according to several census-tract-level measures, including the newly available persistent poverty as well as SES quintile, rurality, and race and ethnicity. RESULTS: Census tracts with persistent poverty and low SES had higher cancer incidence rates (except for breast and prostate cancer), higher percentages of cases diagnosed with regional or distant-stage disease, and lower survival than non-persistent-poverty and higher-SES tracts. Outcomes varied by cancer site when analyzing based on rurality as well as race and ethnicity. Analyses stratified by multiple determinants showed unique patterns of outcomes, which bear further investigation. CONCLUSIONS: This article introduces the Surveillance, Epidemiology, and End Results specialized dataset, which contains census-tract-level social determinants measures, including persistent poverty, rurality, SES quintile, and race and ethnicity. We demonstrate the capacity of these variables for use in producing trends and analyses focusing on cancer health disparities. Analyses may inform interventions and policy changes that improve cancer outcomes among populations living in disadvantaged areas, such as persistent-poverty tracts.


Asunto(s)
Censos , Neoplasias , Programa de VERF , Determinantes Sociales de la Salud , Humanos , Neoplasias/epidemiología , Neoplasias/mortalidad , Programa de VERF/estadística & datos numéricos , Incidencia , Masculino , Femenino , Estados Unidos/epidemiología , Disparidades en el Estado de Salud , Factores Socioeconómicos , Clase Social , Pobreza/estadística & datos numéricos , Etnicidad/estadística & datos numéricos , Población Rural/estadística & datos numéricos
3.
JMIR Med Educ ; 10: e54137, 2024 Jul 25.
Artículo en Inglés | MEDLINE | ID: mdl-39118468

RESUMEN

Background: The Global Specialist Digital Health Workforce Census is the largest workforce survey of the specialist roles that support the development, use, management, and governance of health data, health information, health knowledge, and health technology. Objective: This paper aims to present an analysis of the roles and functions reported by respondents in the 2023 census. Methods: The 2023 census was deployed using Qualtrics and was open from July 1 to August 13, 2023. A broad definition was provided to guide respondents about who is in the specialist digital health workforce. Anyone who self-identifies as being part of this workforce could undertake the survey. The data was analyzed using descriptive statistical analysis and thematic analysis of the functions respondents reported in their roles. Results: A total of 1103 respondents completed the census, with data reported about their demographic information and their roles. The majority of respondents lived in Australia (n=870, 78.9%) or New Zealand (n=130, 11.8%), with most (n=620, 56.3%) aged 35-54 years and identifying as female (n=720, 65.3%). The top four occupational specialties were health informatics (n=179, 20.2%), health information management (n=175, 19.8%), health information technology (n=128, 14.4%), and health librarianship (n=104, 11.7%). Nearly all (n=797, 90%) participants identified as a manager or professional. Less than half (430/1019, 42.2%) had a formal qualification in a specialist digital health area, and only one-quarter (244/938, 26%) held a credential in a digital health area. While two-thirds (502/763, 65.7%) reported undertaking professional development in the last year, most were self-directed activities, such as seeking information or consuming online content. Work undertaken by specialist digital health workers could be classified as either leadership, functional, occupational, or technological. Conclusions: Future specialist digital health workforce capability frameworks should include the aspects of leadership, function, occupation, and technology. This largely unqualified workforce is undertaking little formal professional development to upskill them to continue to support the safe delivery and management of health and care through the use of digital data and technology.


Asunto(s)
Censos , Fuerza Laboral en Salud , Humanos , Persona de Mediana Edad , Femenino , Masculino , Adulto , Fuerza Laboral en Salud/estadística & datos numéricos , Rol Profesional , Encuestas y Cuestionarios , Especialización/estadística & datos numéricos , Salud Global , Australia , Nueva Zelanda
5.
PLoS One ; 19(7): e0307745, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39052662

RESUMEN

Racial geography studies the spatial distributions of multiracial populations. Technical challenges arise from the fact that US Census data, upon which all US-based studies rely, is only available in the form of spatial aggregates at a few levels of granularity. This negatively affects spatial analysis and, consequently, the quantification of racial segregation, especially on a smaller length scale. A recent methodology called the Racial Landscape (RL) stochastically disaggregates racial data at the level of census block aggregates into a grid of monoracial cells. RL-transformed racial data makes possible pattern-based, zoneless analysis, and visualization of racial geography. Here, we introduce the National Racial Geography Dataset 2020 (NRGD2020)-a collection of RL-based grids calculated from the 2020 census data and covering the entire conterminous US. It includes a virtual image layer for a bird's-eye-like view visualization of the spatial distribution of racial sub-populations, numerical grids for calculating racial diversity and segregation within user-defined regions, and precalculated maps of racial diversity and segregation on various length scales. NRGD2020 aims to facilitate and extend spatial analyses of racial geography and to make it more interpretable by tightly integrating quantitative analysis with visualization (mapping).


Asunto(s)
Geografía , Grupos Raciales , Estados Unidos , Humanos , Grupos Raciales/estadística & datos numéricos , Análisis Espacial , Censos , Racismo/estadística & datos numéricos
6.
MMWR Morb Mortal Wkly Rep ; 73(29): 642-647, 2024 Jul 25.
Artículo en Inglés | MEDLINE | ID: mdl-39052518

RESUMEN

Availability of counterfeit prescription pills (counterfeit pills) containing illegally made fentanyl, including counterfeit M-30 oxycodone (counterfeit M-30) pills, has risen sharply in the United States and has been increasingly linked to overdose deaths. In 2023, approximately 115 million counterfeit pills were seized in U.S. High Intensity Drug Trafficking Areas. However, clinical data on counterfeit pill-related overdoses are limited. Medical toxicology consultations during 2017-2022 from one U.S. Census Bureau Western Region hospital participating in the Toxicology Investigators Consortium Core Registry were analyzed. A total of 352 cases suspected to involve counterfeit M-30 pills, including 143 (40.6%) cases of fentanyl exposure and 209 (59.4%) cases of acute withdrawal were identified; consultations increased from three in 2017, to 209 in 2022. Patients aged 15-34 years accounted for 95 (67.4%) exposure cases. Among all patients with exposures, 81.1% were hospitalized, 69.0% of whom were admitted to an intensive care unit. Additional substances were detected in 131 (91.6%) exposures. Providing outreach to younger persons misusing prescription pills, improving access to and distribution of harm reduction tools including fentanyl test strips and naloxone, and promoting linkage of persons treated for overdose in hospitals to harm reduction and substance use treatment services are strategies to reduce morbidity associated with use of counterfeit M-30.


Asunto(s)
Medicamentos Falsificados , Oxicodona , Sistema de Registros , Humanos , Adulto , Oxicodona/envenenamiento , Adolescente , Adulto Joven , Masculino , Estados Unidos , Femenino , Persona de Mediana Edad , Síndrome de Abstinencia a Sustancias , Censos , Anciano , Sobredosis de Droga , Niño , Hospitales
7.
Demography ; 61(4): 995-1009, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39046882

RESUMEN

The 2020 decennial census provides new insights into the demography of same-sex households and can shed light on ongoing debates in urban and gayborhood studies. Although the U.S. Census gives a vast undercount of the LGBTQ population, it is still the largest source of nationally representative data on same-sex households and is accessible over three time points (2000, 2010, 2020). In this research note, we use 2020 census data to examine the residential patterns of same-sex households down to the neighborhood level. By employing the index of dissimilarity, we present results for the 100 largest U.S. cities and 100 largest metropolitan areas that demonstrate moderate yet persistent segregation. In a continuation of prior trends, male same-sex households remain more segregated from different-sex households than do female same-sex households. We find moderate levels of within-group segregation by gender and marital status-representing new demographic trends. Finally, metropolitan areas have a higher dissimilarity index than cities, revealing greater levels of segregation when factoring in suburban areas. We discuss these trends in light of debates regarding the spatial organization of sexuality in residential contexts and outline future avenues for research utilizing recently released 2020 census data.


Asunto(s)
Censos , Composición Familiar , Características de la Residencia , Segregación Social , Humanos , Masculino , Femenino , Características de la Residencia/estadística & datos numéricos , Estados Unidos , Segregación Social/tendencias , Población Urbana/estadística & datos numéricos , Minorías Sexuales y de Género/estadística & datos numéricos , Adulto , Homosexualidad/estadística & datos numéricos , Homosexualidad Masculina/estadística & datos numéricos , Factores Socioeconómicos , Estado Civil/estadística & datos numéricos , Segregación Residencial
9.
BMJ Open Qual ; 13(2)2024 Jun 25.
Artículo en Inglés | MEDLINE | ID: mdl-38925661

RESUMEN

OBJECTIVE: In-person healthcare delivery is rapidly changing with a shifting employment landscape and technological advances. Opportunities to care for patients in more efficient ways include leveraging technology and focusing on caring for patients in the right place at the right time. We aim to use computer modelling to understand the impact of interventions, such as virtual consultation, on hospital census for referring and referral centres if non-procedural patients are cared for locally rather than transferred. PATIENTS AND METHODS: We created computer modelling based on 25 138 hospital transfers between June 2019 and June 2022 with patients originating at one of 17 community-based hospitals and a regional or academic referral centre receiving them. We identified patients that likely could have been cared for at a community facility, with attention to hospital internal medicine and cardiology patients. The model was run for 33 500 days. RESULTS: Approximately 121 beds/day were occupied by transferred patients at the academic centre, and on average, approximately 17 beds/day were used for hospital internal medicine and nine beds/day for non-procedural cardiology patients. Typical census for all internal medicine beds is approximately 175 and for cardiology is approximately 70. CONCLUSION: Deferring transfers for patients in favour of local hospitalisation would increase the availability of beds for complex care at the referral centre. Potential downstream effects also include increased patient satisfaction due to proximity to home and viability of the local hospital system/economy, and decreased resource utilisation for transfer systems.


Asunto(s)
Simulación por Computador , Hospitales Comunitarios , Transferencia de Pacientes , Humanos , Transferencia de Pacientes/estadística & datos numéricos , Transferencia de Pacientes/métodos , Transferencia de Pacientes/normas , Hospitales Comunitarios/estadística & datos numéricos , Simulación por Computador/estadística & datos numéricos , Censos
10.
Br J Gen Pract ; 74(suppl 1)2024 Jun 20.
Artículo en Inglés | MEDLINE | ID: mdl-38902091

RESUMEN

BACKGROUND: UK general practice surgeries collect data regarding patient ethnicities, typically at registration. These data are subsequently used in both clinical care and research, for example, when embedded in risk modelling tools. The published standard list of ethnic categories exists, but little is known about what happens in frontline practice. AIM: To document the variation in ethnic categories available on online patient registration forms across GP surgeries in Oxfordshire. METHOD: Of all 67 GP surgeries in Oxfordshire, 56 had online registration forms that included an option list for ethnicity reporting. The authors compared these against the 2001, 2011, and 2021 UK census ethnic group categorisation. RESULTS: Significant heterogeneity was identified across practices. The number of options for ethnicity group ranged from 5 to 84, with a median of 14, compared to the census lists that comprise of 19 (2021), 18 (2011), and 16 (2001) groups. Of the 56 practices, six used the 2001 census list, five used the 2011 census list, and none used the 2021 census list. Overall, 45 practices used lists that differed from any census list, including categories not typically considered to be ethnic, for example 'Muslim' or 'Buddhist', meaning individuals could potentially identify with multiple options. CONCLUSION: High-quality research and healthcare data that includes patient ethnicity is essential to understand, document, and mitigate against health inequalities. However, this may be compromised by poorly conceived ethnic categorisations and a lack of standardisation. This pilot/exploratory study suggests that the ethnicity records in primary health care may be neither standardised nor meaningful.


Asunto(s)
Etnicidad , Atención Primaria de Salud , Humanos , Reino Unido , Medicina General , Censos , Registros Médicos
11.
N Z Med J ; 137(1596): 20-34, 2024 Jun 07.
Artículo en Inglés | MEDLINE | ID: mdl-38843547

RESUMEN

AIM: Little is known about the extent to which families in Aotearoa New Zealand are affected by long-term health conditions (HCs). This study aimed to explore the rates of nine selected HCs among New Zealand family members within the same household. METHOD: Linked population and administrative health data were obtained for families living in the same household according to the 2013 New Zealand Census (N=1,043,172). Health data (2008-2013) were used to ascertain whether people in these families (N=3,137,517) received treatment or services for nine selected HCs: cancer, chronic obstructive pulmonary disease, heart disease, diabetes, dementia, gout, stroke, traumatic brain injury (TBI), or mental health/behaviour conditions (MHBCs). RESULTS: Over 60% of families included at least one person with a HC, and this rate was higher among multi-generation families (73.9%). The most common HCs were MHBCs (39.4% of families), diabetes (16.0%) and TBI (13.9%). At the highest level of socio-economic deprivation, 57.6% of children aged under 18 years lived with a family member who had a HC. CONCLUSION: Three in five New Zealand household families included someone with at least one of nine selected HCs, with differences in the proportion affected according to family composition, socio-economic status and an individual's ethnicity. This suggests that there are a substantial number of people at risk of the poor outcomes associated with the experience of HCs within their family.


Asunto(s)
Censos , Humanos , Nueva Zelanda/epidemiología , Estudios Transversales , Masculino , Femenino , Adulto , Niño , Adolescente , Enfermedad Crónica/epidemiología , Persona de Mediana Edad , Preescolar , Anciano , Adulto Joven , Lactante , Composición Familiar , Diabetes Mellitus/epidemiología , Factores Socioeconómicos
13.
Sci Adv ; 10(18): eadl2524, 2024 May 03.
Artículo en Inglés | MEDLINE | ID: mdl-38691613

RESUMEN

The U.S. Census Bureau faces a difficult trade-off between the accuracy of Census statistics and the protection of individual information. We conduct an independent evaluation of bias and noise induced by the Bureau's two main disclosure avoidance systems: the TopDown algorithm used for the 2020 Census and the swapping algorithm implemented for the three previous Censuses. Our evaluation leverages the Noisy Measurement File (NMF) as well as two independent runs of the TopDown algorithm applied to the 2010 decennial Census. We find that the NMF contains too much noise to be directly useful without measurement error modeling, especially for Hispanic and multiracial populations. TopDown's postprocessing reduces the NMF noise and produces data whose accuracy is similar to that of swapping. While the estimated errors for both TopDown and swapping algorithms are generally no greater than other sources of Census error, they can be relatively substantial for geographies with small total populations.


Asunto(s)
Algoritmos , Sesgo , Censos , Estados Unidos , Humanos , Privacidad
14.
Artículo en Inglés | MEDLINE | ID: mdl-38791827

RESUMEN

This study considers residential segregation as a critical driver of racial/ethnic health disparities and introduces a proxy measure of segregation that estimates the degree of segregation at the census tract level with a metric capturing the overrepresentation of a racialized/ethnic group in a census tract in relation to that group's representation at the city level. Using Dallas, Texas as a pilot city, the measure is used to investigate mean life expectancy at birth for relatively overrepresented Hispanic, non-Hispanic white, non-Hispanic Black, and Asian census tracts and examine for significant differences between mean life expectancy in relatively overrepresented census tracts and that group's mean life expectancy at the state level. Multivariable linear regression analysis was utilized to assess how segregation measured at the census tract level associates with life expectancy across different racialized/ethnic groups, controlling for socioeconomic disparities. This study aimed to expose the need to consider the possibility of neighborhood mechanisms beyond socioeconomic characteristics as an important determinant of health and draw attention to the importance of critically engaging the experience of place in examinations of racial and ethnic health disparities. Multivariable linear regression modeling resulted in significant findings for non-Hispanic Black, non-Hispanic white, and Asian groups, indicating increased census tract-level life expectancy for Black and white residents in highly segregated census tracts and decreased life expectancy for residents of tracts in which the Asian community is overrepresented when compared to state means. Unadjusted models demonstrated socioeconomic inequities between first and fourth quartile census tracts and pointed to the importance of mixed methods in health disparities research and the importance of including the voice of community members to account for places of daily lived experience and people's relationships with them.


Asunto(s)
Censos , Esperanza de Vida , Humanos , Texas , Etnicidad/estadística & datos numéricos , Segregación Social , Proyectos Piloto , Disparidades en el Estado de Salud , Características de la Residencia/estadística & datos numéricos , Grupos Raciales/estadística & datos numéricos , Masculino , Femenino , Factores Socioeconómicos , Características del Vecindario
15.
Lancet Glob Health ; 12(6): e1027-e1037, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38762283

RESUMEN

BACKGROUND: Medical consumable stock-outs negatively affect health outcomes not only by impeding or delaying the effective delivery of services but also by discouraging patients from seeking care. Consequently, supply chain strengthening is being adopted as a key component of national health strategies. However, evidence on the factors associated with increased consumable availability is limited. METHODS: In this study, we used the 2018-19 Harmonised Health Facility Assessment data from Malawi to identify the factors associated with the availability of consumables in level 1 facilities, ie, rural hospitals or health centres with a small number of beds and a sparsely equipped operating room for minor procedures. We estimate a multilevel logistic regression model with a binary outcome variable representing consumable availability (of 130 consumables across 940 facilities) and explanatory variables chosen based on current evidence. Further subgroup analyses are carried out to assess the presence of effect modification by level of care, facility ownership, and a categorisation of consumables by public health or disease programme, Malawi's Essential Medicine List classification, whether the consumable is a drug or not, and level of average national availability. FINDINGS: Our results suggest that the following characteristics had a positive association with consumable availability-level 1b facilities or community hospitals had 64% (odds ratio [OR] 1·64, 95% CI 1·37-1·97) higher odds of consumable availability than level 1a facilities or health centres, Christian Health Association of Malawi and private-for-profit ownership had 63% (1·63, 1·40-1·89) and 49% (1·49, 1·24-1·80) higher odds respectively than government-owned facilities, the availability of a computer had 46% (1·46, 1·32-1·62) higher odds than in its absence, pharmacists managing drug orders had 85% (1·85, 1·40-2·44) higher odds than a drug store clerk, proximity to the corresponding regional administrative office (facilities greater than 75 km away had 21% lower odds [0·79, 0·63-0·98] than facilities within 10 km of the district health office), and having three drug order fulfilments in the 3 months before the survey had 14% (1·14, 1·02-1·27) higher odds than one fulfilment in 3 months. Further, consumables categorised as vital in Malawi's Essential Medicine List performed considerably better with 235% (OR 3·35, 95% CI 1·60-7·05) higher odds than other essential or non-essential consumables and drugs performed worse with 79% (0·21, 0·08-0·51) lower odds than other medical consumables in terms of availability across facilities. INTERPRETATION: Our results provide evidence on the areas of intervention with potential to improve consumable availability. Further exploration of the health and resource consequences of the strategies discussed will be useful in guiding investments into supply chain strengthening. FUNDING: UK Research and Innovation as part of the Global Challenges Research Fund (Thanzi La Onse; reference MR/P028004/1), the Wellcome Trust (Thanzi La Mawa; reference 223120/Z/21/Z), the UK Medical Research Council, the UK Department for International Development, and the EU (reference MR/R015600/1).


Asunto(s)
Instituciones de Salud , Malaui , Humanos , Instituciones de Salud/estadística & datos numéricos , Instituciones de Salud/provisión & distribución , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Equipos y Suministros/provisión & distribución , Censos
16.
Sci Rep ; 14(1): 10379, 2024 05 06.
Artículo en Inglés | MEDLINE | ID: mdl-38710783

RESUMEN

Citizen science (CS) is the most effective tool for overcoming the limitations of government and/or professional data collection. To compensate for quantitative limitations of the 'Winter Waterbird Census of Korea', we conducted a total of four bird monitoring via CS from 2021 to 2022. To use CS data alongside national data, we studied CS data quality and improvement utilizing (1) digit-based analysis using Benford's law and (2) comparative analysis with national data. In addition, we performed bird community analysis using CS-specific data, demonstrating the necessity of CS. Neither CS nor the national data adhered to Benford's law. Alpha diversity (number of species and Shannon index) was lower, and total beta diversity was higher for the CS data than national data. Regarding the observed bird community, the number of species per family was similar; however, the number of individuals per family/species differed. We also identified the necessity of CS by confirming the possibility of predicting bird communities using CS-specific data. CS was influenced by various factors, including the perceptions of the survey participants and their level of experience. Therefore, conducting CS after systematic training can facilitate the collection of higher-quality data.


Asunto(s)
Aves , Censos , Ciencia Ciudadana , Animales , Aves/fisiología , República de Corea , Biodiversidad
17.
J R Soc Interface ; 21(214): 20230495, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38715320

RESUMEN

Monitoring urban structure and development requires high-quality data at high spatio-temporal resolution. While traditional censuses have provided foundational insights into demographic and socio-economic aspects of urban life, their pace may not always align with the pace of urban development. To complement these traditional methods, we explore the potential of analysing alternative big-data sources, such as human mobility data. However, these often noisy and unstructured big data pose new challenges. Here, we propose a method to extract meaningful explanatory variables and classifications from such data. Using movement data from Beijing, which are produced as a by-product of mobile communication, we show that meaningful features can be extracted, revealing, for example, the emergence and absorption of subcentres. This method allows the analysis of urban dynamics at a high-spatial resolution (here 500 m) and near real-time frequency, and high computational efficiency, which is especially suitable for tracing event-driven mobility changes and their impact on urban structures.


Asunto(s)
Censos , Humanos , Beijing , Remodelación Urbana , Población Urbana , Dinámica Poblacional
18.
Demography ; 61(3): 627-642, 2024 Jun 01.
Artículo en Inglés | MEDLINE | ID: mdl-38779962

RESUMEN

In this research note, we describe the results of the first validation study of the U.S. Census Bureau's new Community Resilience Estimates (CRE), which uses Census microdata to develop a tract-level vulnerability index for the United States. By employing administrative microdata to link Social Security Administration mortality records to CRE, we show that CRE quartiles provide more stable predictions of COVID-19 excess deaths than single demographic categorizations such as race or age, as well as other vulnerability measures including the U.S. Centers for Disease Control and Prevention's Social Vulnerability Index (SVI) and the Federal Emergency Management Agency's National Risk Index (NRI). We also use machine learning techniques to show that CRE provides more predictive power of COVID-19 excess deaths than standard socioeconomic predictors of vulnerability such as poverty and unemployment, as well as SVI and NRI. We find that a 10-percentage-point increase in a key CRE risk measure is associated with one additional death per neighborhood during the initial outbreak of COVID-19 in the United States. We conclude that, compared with alternative measures, CRE provides a more accurate predictor of community vulnerability to a disaster such as a pandemic.


Asunto(s)
COVID-19 , Censos , SARS-CoV-2 , Humanos , COVID-19/mortalidad , COVID-19/epidemiología , Estados Unidos/epidemiología , Femenino , Vulnerabilidad Social , Masculino , Persona de Mediana Edad , Anciano , Adulto , Características de la Residencia/estadística & datos numéricos , Factores Socioeconómicos , Pandemias
19.
Med Care Res Rev ; 81(4): 346-350, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38742620

RESUMEN

Census data are vital to health care research but must also protect respondents' confidentiality. The 2020 decennial Census employs a new Differential Privacy framework; this study examines its effect on the accuracy of an important tool for measuring health disparities, the Bayesian Improved Surname and Geocoding (BISG) algorithm, which uses Census Block Group data to estimate race and ethnicity when self-reported data are unavailable. Using self-reported race and ethnicity data as our standard, we compared the accuracy of BISG estimates calculated using the original 2010 Census counts to the accuracy of estimates calculated using 2010 data but with 2020 Differential Privacy in place. The Differential Privacy methodology slightly decreases BISG accuracy for American Indian and Alaska Native people but has little effect for other groups, suggesting that the methodology will not impede health disparities research that employs BISG and similar methods.


Asunto(s)
Censos , Etnicidad , Humanos , Estados Unidos , Confidencialidad , Teorema de Bayes , Grupos Raciales , Algoritmos , Privacidad/legislación & jurisprudencia , Disparidades en el Estado de Salud
20.
Int J Epidemiol ; 53(3)2024 Apr 11.
Artículo en Inglés | MEDLINE | ID: mdl-38715336

RESUMEN

BACKGROUND: Biobanks typically rely on volunteer-based sampling. This results in large samples (power) at the cost of representativeness (bias). The problem of volunteer bias is debated. Here, we (i) show that volunteering biases associations in UK Biobank (UKB) and (ii) estimate inverse probability (IP) weights that correct for volunteer bias in UKB. METHODS: Drawing on UK Census data, we constructed a subsample representative of UKB's target population, which consists of all individuals invited to participate. Based on demographic variables shared between the UK Census and UKB, we estimated IP weights (IPWs) for each UKB participant. We compared 21 weighted and unweighted bivariate associations between these demographic variables to assess volunteer bias. RESULTS: Volunteer bias in all associations, as naively estimated in UKB, was substantial-in some cases so severe that unweighted estimates had the opposite sign of the association in the target population. For example, older individuals in UKB reported being in better health, in contrast to evidence from the UK Census. Using IPWs in weighted regressions reduced 87% of volunteer bias on average. Volunteer-based sampling reduced the effective sample size of UKB substantially, to 32% of its original size. CONCLUSIONS: Estimates from large-scale biobanks may be misleading due to volunteer bias. We recommend IP weighting to correct for such bias. To aid in the construction of the next generation of biobanks, we provide suggestions on how to best ensure representativeness in a volunteer-based design. For UKB, IPWs have been made available.


Asunto(s)
Sesgo de Selección , Biobanco del Reino Unido , Voluntarios , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Censos , Reino Unido
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