Reporting and Availability of COVID-19 Demographic Data by US Health Departments (April to October 2020): Observational Study

Background There is an urgent need for consistent collection of demographic data on COVID-19 morbidity and mortality and sharing it with the public in open and accessible ways. Due to the lack of consistency in data reporting during the initial spread of COVID-19, the Equitable Data Collection and Disclosure on COVID-19 Act was introduced into the Congress that mandates collection and reporting of demographic COVID-19 data on testing, treatments, and deaths by age, sex, race and ethnicity, primary language, socioeconomic status, disability, and county. To our knowledge, no studies have evaluated how COVID-19 demographic data have been collected before and after the introduction of this legislation. Objective This study aimed to evaluate differences in reporting and public availability of COVID-19 demographic data by US state health departments and Washington, District of Columbia (DC) before (pre-Act), immediately after (post-Act), and 6 months after (6-month follow-up) the introduction of the Equitable Data Collection and Disclosure on COVID-19 Act in the Congress on April 21, 2020. Methods We reviewed health department websites of all 50 US states and Washington, DC (N=51). We evaluated how each state reported age, sex, and race and ethnicity data for all confirmed COVID-19 cases and deaths and how they made this data available (ie, charts and tables only or combined with dashboards and machine-actionable downloadable formats) at the three timepoints. Results We found statistically significant increases in the number of health departments reporting age-specific data for COVID-19 cases (P=.045) and resulting deaths (P=.002), sex-specific data for COVID-19 deaths (P=.003), and race- and ethnicity-specific data for confirmed cases (P=.003) and deaths (P=.005) post-Act and at the 6-month follow-up (P<.05 for all). The largest increases were race and ethnicity state data for confirmed cases (pre-Act: 18/51, 35%; post-Act: 31/51, 61%; 6-month follow-up: 46/51, 90%) and deaths due to COVID-19 (pre-Act: 13/51, 25%; post-Act: 25/51, 49%; and 6-month follow-up: 39/51, 76%). Although more health departments reported race and ethnicity data based on federal requirements (P<.001), over half (29/51, 56.9%) still did not report all racial and ethnic groups as per the Office of Management and Budget guidelines (pre-Act: 5/51, 10%; post-Act: 21/51, 41%; and 6-month follow-up: 27/51, 53%). The number of health departments that made COVID-19 data available for download significantly increased from 7 to 23 (P<.001) from our initial data collection (April 2020) to the 6-month follow-up, (October 2020). Conclusions Although the increased demand for disaggregation has improved public reporting of demographics across health departments, an urgent need persists for the introduced legislation to be passed by the Congress for the US states to consistently collect and make characteristics of COVID-19 cases, deaths, and vaccinations available in order to allocate resources to mitigate disease spread.

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Reporting and availability of COVID-19 demographic data by US health departments, April 2020: Observational Study (Preprint)

10.2196/preprints.24288 ◽

2020 ◽

Author(s):

Peace Ossom-Williamson ◽

Isaac Williams ◽

Kukhyoun Kim ◽

Tiffany B. Kindratt

Keyword(s):

Data Collection ◽

Race And Ethnicity ◽

Demographic Data ◽

Health Department ◽

Washington Dc ◽

Health Departments ◽

Before And After ◽

Quasi Experimental ◽

Data Points ◽

Race Ethnicity

BACKGROUND There is an urgent need for the unified and consistent collection of demographic data on coronavirus disease 2019 (COVID-19) morbidity and mortality and the sharing of data in open and accessible ways. Due to lack of consistency and transparency during the initial spread of COVID-19, the Equitable Data Collection and Disclosure on COVID-19 Act was introduced into Congress to require collection and reporting of demographic COVID-19 data on testing, treatments, and deaths by race, ethnicity, sex, age, disability, and socioeconomic status. The bill recommends collecting data on race and ethnicity in line with federal standards, including the Office and Management and Budget’s (OMB) guidelines for collecting race and ethnicity. To our knowledge, no studies have evaluated how all of the aforementioned demographic data points have been collected before and after the introduction of this legislation in April 2020. OBJECTIVE The objective of this study was to evaluate differences in reporting and availability of COVID-19 demographic data by US state health departments and Washington, DC before and after the introduction of Equitable Data Collection and Disclosure on COVID-19 Act in Congress on April 21, 2020. METHODS In this quasi-experimental study, we reviewed health department websites from all 50 states and Washington, DC. We evaluated how each state reported age, gender, and race/ethnicity of cases and deaths and how they made COVID-19 data available (charts and tables only, dashboards, machine-actionable by downloading) before and after introduction of legislation. RESULTS We found statistically significant increases in the number of health departments reporting the age of COVID-19 cases (P=.045) and deaths (P=.0016), gender of deaths (P=.0027) and race/ethnicity of cases (P=.003) and deaths (P=.005). More health departments reported race/ethnicity based on federal requirements (P<.0001), although over half (56.9%) still did not report all racial and ethnic groups based on OMB guidelines. The number of health departments who made their COVID-19 data available to download significantly increased from 7 to 11 (P=.005). CONCLUSIONS Although increased demand for disaggregations has improved reporting of demographics across health departments, there is an urgent need for the introduced legislation to be passed for the US to consistently collect and make characteristics of COVID-19 cases and deaths available to allocate resources to mitigate the spread of this disease.

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Variation in Reporting of the Race and Ethnicity of COVID-19 Cases and Deaths Across US States: April 12, 2020, and November 9, 2020

American Journal of Public Health ◽

10.2105/ajph.2021.306167 ◽

2021 ◽

pp. e1-e8

Author(s):

Megan D. Douglas ◽

Ebony Respress ◽

Anne H. Gaglioti ◽

Chaohua Li ◽

Mitchell A. Blount ◽

...

Keyword(s):

Data Collection ◽

Race And Ethnicity ◽

Demographic Data ◽

Us States ◽

Political Determinants ◽

Communities Of Color ◽

The Social ◽

Race Ethnicity ◽

The Impact ◽

Racial Ethnic

Despite growing evidence that COVID-19 is disproportionately affecting communities of color, state-reported racial/ethnic data are insufficient to measure the true impact. We found that between April 12, 2020, and November 9, 2020, the number of US states reporting COVID-19 confirmed cases by race and ethnicity increased from 25 to 50 and 15 to 46, respectively. However, the percentage of confirmed cases reported with missing race remained high at both time points (29% on April 12; 23% on November 9). Our analysis demonstrates improvements in reporting race/ethnicity related to COVID-19 cases and deaths and highlights significant problems with the quality and contextualization of the data being reported. We discuss challenges for improving race/ethnicity data collection and reporting, along with opportunities to advance health equity through more robust data collection and contextualization. To mitigate the impact of COVID-19 on racial/ethnic minorities, accurate and high-quality demographic data are needed and should be analyzed in the context of the social and political determinants of health. (Am J Public Health. Published online ahead of print April 15, 2021: e1–e8. https://doi.org/10.2105/AJPH.2021.306167 )

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Association of frailty in hospitalized and institutionalized elderly in the community-dwelling

Revista Brasileira de Enfermagem ◽

10.1590/0034-7167.2016690411i ◽

2016 ◽

Vol 69 (4) ◽

pp. 691-696 ◽

Cited By ~ 4

Author(s):

Suzele Cristina Coelho Fabrício-Wehbe ◽

Rosalina Aparecida Partezani Rodrigues ◽

Vanderlei Jose Haas ◽

Jack Roberto Silva Fhon ◽

Marina Aleixo Diniz

Keyword(s):

Demographic Data ◽

Functional Independence Measure ◽

Functional Independence ◽

Sampling Procedure ◽

Community Dwelling ◽

Specific Data ◽

Follow Up Study ◽

Dual Stage ◽

The Subject

ABSTRACT Objective: to investigate the association between frailty with hospitalization and institutionalization in a follow-up study of elderly residents. Method: the follow-up study was performed in 2008 and 2013 with elderly of both genders, aged 65 years and older who were living in the community-dwelling. The sampling procedure performed was probabilistic, with dual-stage clustering. In 2008, 515 elderly people were interviewed and, in 2013, 262. We used the socioeconomic and demographic data, self-reported morbidity, specific data of hospitalization and institutionalization. Frailty was measured by the Edmonton Frail Scale (EFS), and functional capacity through the Functional Independence Measure. Results: we found the mean gross EFS score was higher among resident elderly who were hospitalized and institutionalized and was statistically significant in both investigated years. Conclusion: the confirmation of association between frailty and hospitalization and institutionalization reinforces the importance of the subject, and highlights frailty as an important tool for risk estimates for these adverse events.

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Who We Are

Hurricane Harvey's Aftermath ◽

10.18574/nyu/9781479800735.003.0002 ◽

2020 ◽

pp. 26-46

Author(s):

Kevin M. Fitzpatrick ◽

Matthew L. Spialek

Keyword(s):

Data Collection ◽

Recovery Process ◽

Methodological Framework ◽

Online Surveys ◽

Specific Data ◽

Face To Face ◽

Secondary Sources ◽

Recovery Processes ◽

Before And After

Chapter two describes the methodological framework and design for this project. The authors present a discussion of the methods used to select persons for both face-to-face interviews and online surveys, along with the follow-up strategies used to talk with civilians and organizational officials involved in the recovery process. This chapter discusses both the approach to the data collection, as well as what specific data the authors were interested in acquiring as it pertained to understanding how displacement and recovery processes varied across individual survivors. Finally, the chapter discusses in detail the numerous strategies employed to tell the survivors’ stories—pictures, maps, tables, charts, and narratives, along with additional data from secondary sources to help characterize the places where survivors were living both before and after the disaster.

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Abstract 139: Costs to Implement Components of Stroke Systems of Care Under the Paul Coverdell National Acute Stroke Program

Circulation Cardiovascular Quality and Outcomes ◽

10.1161/circoutcomes.9.suppl_2.139 ◽

2016 ◽

Vol 9 (suppl_2) ◽

Author(s):

Benjamin Yarnoff ◽

Olga Khavjou ◽

Kincaid Lowe ◽

Heesoo Joo ◽

Christina Bradley ◽

...

Keyword(s):

Data Collection ◽

Acute Stroke ◽

Systems Of Care ◽

Stroke Care ◽

Health Department ◽

Health Departments ◽

Activity Based Costing ◽

Clinical Guidance ◽

Program Characteristics ◽

Stroke Systems Of Care

Objective: During 2012-2015, the Centers for Disease Control and Prevention’s (CDC) Paul Coverdell National Acute Stroke Program (PCNASP) funded state health departments to improve the quality of stroke care in key clinical settings. The objective of this study was to assess costs for health departments and partners implementing PCNASP newly established programs. Methods: We developed Excel-based data collection instruments to collect costs associated with implementing stroke systems of care from volunteer PCNASP-funded health departments. Nine PCNASP-funded health departments were eligible based on program characteristics, six of which agreed to participate; five focused on pre- and in-hospital stroke care, and one also included transitions to post-hospital settings. These health departments partnered with a total of 467 organizations in their six states (37 to 125 partners per state). We used an activity-based costing approach to allocate costs across primary program activities: data collection, linkage, and management; clinical guidance and expertise; quality improvement (QI); building and maintaining partnerships; program evaluation; and administration. We collected costs to the health departments paid directly by PCNASP funds, in-kind contributions from the health department, and in-kind contributions from partners. Four of the six health departments received in-kind contributions from select partners. We analyzed costs by resource category (labor; materials, travel, services, equipment; contracts, consultants; overhead) and program activities across three settings: pre-hospital, in-hospital, and post-hospital. Results: Six health departments reported grant expenditures averaging $991,549 (ranging from $790,123 to $1,298,160) per health department over 36 months. Three of those health departments reported health department in-kind contributions averaging $374,439 (ranging from $5,805 to $1,394,097) for the same 36 months. Health departments reported greatest expenditures on labor (46%, ranging from 15% to 79%) and contracts and consultants (37%, ranging from 5% to 76%). Across program activities, health departments incurred costs for QI (37%, ranging from 17% to 60%); administration (19%, ranging from 7% to 39%); data (17%, ranging from 15% to 79%); partnerships (10%, ranging from 2% to 23%); clinical guidance (9%, ranging from 4% to 16%); and evaluation (8%, ranging from 4% to 15%). Four health departments collected in-kind contributions for 22 partners. Partners had average in-kind contributions of $373,211 (ranging from $1,040 to $1,421,729). Conclusion: Results from this study highlight key cost drivers of implementing components of stroke systems of care. This study was the first to comprehensively document actual costs of implementing QI for stroke systems of care across multiple programs and can inform future planning efforts.

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Participatory Approaches to Addressing Missing COVID-19 Race and Ethnicity Data

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18126559 ◽

2021 ◽

Vol 18 (12) ◽

pp. 6559

Author(s):

Farah Kader ◽

Clyde Lanford Smith

Keyword(s):

Missing Data ◽

Race And Ethnicity ◽

Demographic Data ◽

Healthcare Access ◽

Federal State ◽

Race Ethnicity ◽

State And Local ◽

Social Environmental ◽

Novel Coronavirus ◽

Ethnicity Data

Varying dimensions of social, environmental, and economic vulnerability can lead to drastically different health outcomes. The novel coronavirus (SARS-CoV-19) pandemic exposes how the intersection of these vulnerabilities with individual behavior, healthcare access, and pre-existing conditions can lead to disproportionate risks of morbidity and mortality from the virus-induced illness, COVID-19. The available data shows that those who are black, indigenous, and people of color (BIPOC) bear the brunt of this risk; however, missing data on race/ethnicity from federal, state, and local agencies impedes nuanced understanding of health disparities. In this commentary, we summarize the link between racism and COVID-19 disparities and the extent of missing data on race/ethnicity in critical COVID-19 reporting. In addition, we provide an overview of the current literature on missing demographic data in the US and hypothesize how racism contributes to nonresponse in health reporting broadly. Finally, we argue that health departments and healthcare systems must engage communities of color to co-develop race/ethnicity data collection processes as part of a comprehensive strategy for achieving health equity.

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Radiologist observations of computed tomography (CT) images predict treatment outcome in TB Portals, a real-world database of tuberculosis (TB) cases

PLoS ONE ◽

10.1371/journal.pone.0247906 ◽

2021 ◽

Vol 16 (3) ◽

pp. e0247906

Author(s):

Gabriel Rosenfeld ◽

Andrei Gabrielian ◽

Qinlu Wang ◽

Jingwen Gu ◽

Darrell E. Hurt ◽

...

Keyword(s):

Treatment Outcome ◽

Data Collection ◽

Real World ◽

Ct Images ◽

Disease Spread ◽

Drug Resistant ◽

Treatment Regimens ◽

Additional Data Collection ◽

Poor Treatment Outcome

The TB Portals program provides a publicly accessible repository of TB case data containing multi-modal information such as case clinical characteristics, pathogen genomics, and radiomics. The real-world resource contains over 3400 TB cases, primarily drug resistant cases, and CT images with radiologist annotations are available for many of these cases. The breadth of data collected offers a patient-centric view into the etiology of the disease including the temporal context of the available imaging information. Here, we analyze a cohort of new TB cases with available radiologist observations of CTs taken around the time of initial registration of the case into the database and with available follow up to treatment outcome of cured or died. Follow up ranged from 5 weeks to a little over 2 years consistent with the longest treatment regimens for drug resistant TB and cases were registered within the years 2008 to 2019. The radiologist observations were incorporated into machine learning pipelines to test various class balancing strategies on the performance of predictive models. The modeling results support that the radiologist observations are predictive of treatment outcome. Moreover, inferential statistical analysis identifies markers of TB disease spread as having an association with poor treatment outcome including presence of radiologist observations in both lungs, swollen lymph nodes, multiple cavities, and large cavities. While the initial results are promising, further data collection is needed to incorporate methods to mitigate potential confounding such as including additional model covariates or matching cohorts on covariates of interest (e.g. demographics, BMI, comorbidity, TB subtype, etc.). Nonetheless, the preliminary results highlight the utility of the resource for hypothesis generation and exploration of potential biomarkers of TB disease severity and support these additional data collection efforts.

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Melatih Kepemimpinan Perangkat Desa Kebonharjo Kulonprogo: Membangun Sikap Anti Korupsi

Proceeding of Community Development ◽

10.30874/comdev.2017.16 ◽

2018 ◽

Vol 1 ◽

pp. 107

Author(s):

Adi Heryadi ◽

Evianawati Evianawati

Keyword(s):

Transformational Leadership ◽

Data Collection ◽

Paired Samples ◽

Significant Difference ◽

Before And After ◽

Post Test ◽

Sample Test ◽

Corruption Perception ◽

Measuring Tool

This study aims to prove whether transformational leadership training is effective for building anti-corruption attitudes of villages in Kebonharjo village, subdistrict Samigaluh Kulonprogo. This research is an experimental research with one group pre and posttest design.Subject design is 17 people from village of 21 candidates registered. Measuring tool used in this research is the scale of anti-corruption perception made by the researcher referring to the 9 anti-corruption values with the value of reliability coefficient of 0.871. The module used as an intervention made by the researcher refers to the transformational leadership dimension (Bass, 1990). The data collected is analyzed by statistical analysis of different test Paired Sample Test. Initial data collection results obtained sign value of 0.770 which means> 0.05 or no significant difference between anti-corruption perception score between before and after training. After a period of less than 1 (one) month then conducted again the measurement of follow-up of the study subjects in the measurement again using the scale of anti-corruption perception. The results of the second data collection were analysed with Paired Samples Test and obtained the value of 0.623 sign meaning p> 0.05 or no significant difference between post test data with follow-up data so that the hypothesis of this study was rejected.

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Adenosine-induced Asystole during AVM Embolization

Clinical Neuroradiology ◽

10.1007/s00062-021-01035-z ◽

2021 ◽

Author(s):

V. Hellstern ◽

P. Bhogal ◽

M. Aguilar Pérez ◽

M. Alfter ◽

A. Kemmling ◽

...

Keyword(s):

Demographic Data ◽

Clinical Results ◽

Endovascular Embolization ◽

Neurological Deficits ◽

Residual Shunt ◽

Grade 5 ◽

Martin Grade ◽

Grade 3 ◽

Brain Avms

Abstract Background Adenosine induced cardiac standstill has been used intraoperatively for both aneurysm and arteriovenous malformation (AVM) surgery and embolization. We sought to report the results of adenosine induced cardiac standstill as an adjunct to endovascular embolization of brain AVMs. Material and Methods We retrospectively identified patients in our prospectively maintained database to identify all patients since January 2007 in whom adenosine was used to induce cardiac standstill during the embolization of a brain AVM. We recorded demographic data, clinical presentation, Spetzler Martin grade, rupture status, therapeutic intervention and number of embolization sessions, angiographic and clinical results, clinical and radiological outcomes and follow-up information. Results We identified 47 patients (22 female, 47%) with average age 42 ± 17 years (range 6–77 years) who had undergone AVM embolization procedures using adjunctive circulatory standstill with adenosine. In total there were 4 Spetzler Martin grade 1 (9%), 9 grade 2 (18%), 15 grade 3 (32%), 8 grade 4 (18%), and 11 grade 5 (23%) lesions. Of the AVMs six were ruptured or had previously ruptured. The average number of embolization procedures per patient was 5.7 ± 7.6 (range 1–37) with an average of 2.6 ± 2.2 (range 1–14) embolization procedures using adenosine. Overall morbidity was 17% (n = 8/47) and mortality 2.1% (n = 1/47), with permanent morbidity seen in 10.6% (n = 5/47) postembolization. Angiographic follow-up was available for 32 patients with no residual shunt seen in 26 (81%) and residual shunts seen in 6 patients (19%). The angiographic follow-up is still pending in 14 patients. At last follow-up 93.5% of patients were mRS ≤2 (n = 43/46). Conclusion Adenosine induced cardiac standstill represents a viable treatment strategy in high flow AVMs or AV shunts that carries a low risk of mortality and permanent neurological deficits.

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71 Ultrasound directed reduction of Colles’ type distal radial fractures in ED (UDiReCT): a feasibility randomized controlled trial

Emergency Medicine Journal ◽

10.1136/emj-2020-rcemabstracts.21 ◽

2020 ◽

Vol 37 (12) ◽

pp. 835.3-836

Author(s):

Hamza Malik ◽

Andrew Appelboam ◽

Gordon Taylor ◽

Daryl Wood ◽

Karen Knapp

Keyword(s):

Data Collection ◽

Controlled Trial ◽

Wrist Fracture ◽

Recruitment Rate ◽

Feasibility Trial ◽

Point Of Care Ultrasound ◽

Distal Radial Fractures ◽

Definitive Trial ◽

Randomised Controlled

Aims/Objectives/BackgroundWrist fractures are among the commonest injuries seen in the emergency department (ED). Around 25% of these injuries have Colles’ type fracture displacement and undergo manipulation in the ED. In the UK, these manipulations are typically done ‘blind’ without real time imaging and recent observational studies show that over 40% of the injuries go on to require surgical fixation (due to inadequate initial reduction or re-displacement). Point of care ultrasound has been used to guide and improve wrist fracture reductions but it’s effect on subsequent outcome is not established. We set up and ran the UK’s first randomised controlled feasibility trial comparing standard and ultrasound guided ED wrist fracture manipulations to test a definitive trial protocol, data collection and estimate recruitment rate towards a future definitive trial.Methods/DesignWe conducted a 1:1, single blind, parallel group, randomised controlled feasibility trial in two UK hospitals. Adults with Colles’ type distal radial fractures requiring manipulation in the ED were recruited by supervising emergency physicians supported by network research nurses. Participants were randomised to ultrasound directed fracture manipulation (intervention) or standard care with sham ultrasound (controls). The trial was run through Exeter Clinical Trials Unit and consent, randomisation and data collection conducted electronically in REDCap cloud. All participants were followed up at 6 weeks to record any surgical intervention and also underwent baseline and 3 month quality of life (EQ-5D-5L) and wrist function (Patient Rated Wrist Evaluation (PRWE) assessments.Results/ConclusionsWe recruited 47 patients in total, with 23 randomised to the interventional arm and 24 randomised to the control arm. We were able to follow up 100% of the patients for the 6 week follow up. Data analysis and results will be presented at the time of the conference.

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