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Enrichment sampling for a multi-site patient survey using electronic health records and census data

Nathaniel D Mercaldo, Kyle B Brothers, David S Carrell, Ellen W Clayton, John J Connolly, Ingrid A Holm, Carol R Horowitz, Gail P Jarvik, Terrie E Kitchner, Rongling Li, Catherine A McCarty, Jennifer B McCormick (+8 others)
2018 JAMIA Journal of the American Medical Informatics Association  
We describe a stratified sampling design that combines electronic health records (EHRs) and United States Census (USC) data to construct the sampling frame and an algorithm to enrich the sample with individuals  ...  We would also like to thank the referees for their invaluable input that improved the quality of this manuscript. Conflict of interest statement. None declared.  ...  ACKNOWLEDGMENTS We would like to acknowledge the work of the following CERC Survey workgroup members: Melissa Basford, Mollie Bodin, Diego Campos, Brittany City, Natalia Connolly, Brianne Derveloy, Joe  ... 
doi:10.1093/jamia/ocy164 pmid:30590688 pmcid:PMC6351976 fatcat:j5rx6iar4zhdjbgindtyccz2lm

Conducting a large, multi-site survey about patients' views on broad consent: challenges and solutions

Maureen E. Smith, Saskia C. Sanderson, Kyle B. Brothers, Melanie F. Myers, Jennifer McCormick, Sharon Aufox, Martha J. Shrubsole, Nanibaá A. Garrison, Nathaniel D. Mercaldo, Jonathan S. Schildcrout, Ellen Wright Clayton, Armand H. Matheny Antommaria (+15 others)
2016 BMC Medical Research Methodology  
After combining EMR data with census data, and supplementing missing EMR data with census data, we developed sampling strata based on a cross classification age (> = 35 or <35 for adult sites, > = 12 or  ...  The eMERGE (Electronic Medical Records and Genomics) Network undertook such a challenge in 2013.  ...  Availability of data and materials The survey materials are available upon request from the first author.  ... 
doi:10.1186/s12874-016-0263-7 pmid:27881091 pmcid:PMC5122167 fatcat:cbnpxa67xjgjvmgi3opoun4fpy

Integrating electronic health record, cancer registry, and geospatial data to study lung cancer in Asian American, Native Hawaiian and Pacific Islander ethnic groups

Mindy C DeRouen, Caroline A Thompson, Alison J Canchola, Anqi Jin, Sixiang Nie, Carmen Wong, Jennifer Jain, Daphne Y. Lichtensztajn, Yuqing Li, Laura Allen, Manali I. Patel, Yihe G Daida (+8 others)
2021 Cancer Epidemiology, Biomarkers and Prevention  
We leveraged electronic health records (EHRs) from two healthcare systems-Sutter Health in northern California and Kaiser Permanente Hawai'i- that have high representation of AANHPI populations.  ...  We used an integrative data approach to assemble a large-scale cohort to study lung cancer risk among AANHPI by smoking status with attention to representation of specific AANHPI ethnic groups.  ...  We assembled a large-scale, multilevel electronic health record (EHR)-based cohort to facilitate research on the incidence and etiology of lung cancer among specific AANHPI ethnic groups.  ... 
doi:10.1158/1055-9965.epi-21-0019 pmid:34001502 pmcid:PMC8530225 fatcat:kf6fj423frfo5enlkhn3ogwmku

Improving efficiency and reducing costs: Design of an adaptive, seamless, and enriched pragmatic efficacy trial of an online asthma management program

Mei Lu, Dennis R. Ownby, Edward Zoratti, Douglas Roblin, Dayna Johnson, Christine Cole Johnson, Christine L.M. Joseph
2014 Contemporary Clinical Trials  
(2), electronic medical records (EMR) for patient identification and data collection, and (3) adaptive, enrichment designs with pragmatic approaches.  ...  Promising alternatives to increase trial efficiency and reduce costs include the use of (1) electronic initiatives that permit electronic remote data capture (EDC) for direct data collection at a site  ...  Acknowledgments Funding This work was supported by the National Institutes of Health (NIH) NCI Grant R01HL114981.  ... 
doi:10.1016/j.cct.2014.02.008 pmid:24607295 pmcid:PMC4877682 fatcat:ervphg65xfgl7g7h3qdbbm5ppi

Racial and Socioeconomic Disparity Associates with Differences in Cardiac DNA Methylation among Men with End-Stage Heart Failure

Mark E. Pepin, Chae-Myeong Ha, Luke A. Potter, Sayan Bakshi, Joseph P. Barchue, Ayman Haj asaad, Steven M. Pogwizd, Salpy V. Pamboukian, Bertha A. Hidalgo, Selwyn M. Vickers, Adam R. Wende
2021 American Journal of Physiology. Heart and Circulatory Physiology  
Among the available patient attributes, only categorical self-identified patient race could delineate this methylation signature, with African American (AA) and Caucasian American (CA) samples clustering  ...  Because race is a social construct, and thus a poor proxy of human physiology, extensive review of medical records was conducted, but ultimately failed to identify co-variates of race at the time of LVAD  ...  A: patient demographics and health information was obtained from the electronic health records (EHR), reporting either the means ± 95% CI or number of patients with a characteristic relative to number  ... 
doi:10.1152/ajpheart.00036.2021 pmid:33769919 pmcid:PMC8163657 fatcat:6wu2rb6fvfbalkcrwrf32psyum

Association of Chronic Acid Suppression and Social Determinants of Health with COVID-19 Infection [article]

Bing Zhang, Anna L Silverman, Saroja Bangaru, Douglas Arneson, Sonya Dasharathy, Nghia Nguyen, Diane Rodden, Jonathan Shih, Atul J Butte, Wael N El-Nachef, Brigid S Boland, Vivek A Rudrapatna
2021 medRxiv   pre-print
We performed a case-control study involving clinician-abstracted data from 900 health records across 3 US medical centers.  ...  We incorporated sociobehavioral predictors of infectious exposure using geomapping to publicly-available data.  ...  Acknowledgments The authors acknowledge the US Census, The New York Times, SafeGraph, and Google LLC for providing data relevant to this study.  ... 
doi:10.1101/2021.01.10.21249545 fatcat:bnbjhimpxzcarlfmpfw27y2k44

Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US

Saskia C. Sanderson, Kyle B. Brothers, Nathaniel D. Mercaldo, Ellen Wright Clayton, Armand H. Matheny Antommaria, Sharon A. Aufox, Murray H. Brilliant, Diego Campos, David S. Carrell, John Connolly, Pat Conway, Stephanie M. Fullerton (+17 others)
2017 American Journal of Human Genetics  
In this experimental survey, individuals from 11 US healthcare systems in the Electronic Medical Records and Genomics (eMERGE) Network were randomly allocated to one of three hypothetical scenarios: tiered  ...  Individuals participating in biobanks and other large research projects are increasingly asked to provide broad consent for open-ended research use and widespread sharing of their biosamples and data.  ...  be geocoded; and (3) age and sex available in the electronic health record.  ... 
doi:10.1016/j.ajhg.2017.01.021 pmid:28190457 pmcid:PMC5339111 fatcat:stjobqxzird5xa7zkcwmbnfdla

Leveraging data and digital health technologies to assess and impact social determinants of health (SDoH)

Kelly Jean Thomas Craig, Nicole Fusco, Thrudur Gunnarsdottir, Luc Chamberland, Jane Snowdon, William Kassler
2021 Online Journal of Public Health Informatics  
; 2) leverage data aggregation – enrich SDoH insights using multiple data sources, and use analytics- and AI-based methods to aggregate data; and 3) use analytics and AI-based methods to assess and address  ...  (SDoH) for population health improvement.  ...  for critical reading; and Dave Liederbach and Kyu Rhee for project support.  ... 
doi:10.5210/ojphi.v13i3.11081 pmid:35082976 pmcid:PMC8765800 fatcat:qbyankhc2jep7ojamxb3zi5aee

Association of Neighborhood-Level Factors and COVID-19 Infection Patterns in Philadelphia Using Spatial Regression

Mary Regina Boland, Jessica Liu, Cecilia Balocchi, Jessica Meeker, Ray Bai, Ian Mellis, Danielle L Mowery, Daniel Herman
2021 AMIA Annual Symposium Proceedings  
We developed an informatics method to integrate SARS-CoV-2 data with multiple neighborhood-level factors from the American Community Survey and  ...  Our approach and its findings could inform future public health efforts.  ...  Acknowledgments: We thank the University of Pennsylvania Perelman School of Medicine for generous startup funds and Department of Pathology and Laboratory Medicine for supporting this quality improvement  ... 
pmid:34457170 pmcid:PMC8378638 fatcat:f2wqlvflrzh6birclcplxb5aym

The Mass General Brigham Biobank Portal: an i2b2-based data repository linking disparate and high-dimensional patient data to support multimodal analytics

Victor M Castro, Vivian Gainer, Nich Wattanasin, Barbara Benoit, Andrew Cagan, Bhaswati Ghosh, Sergey Goryachev, Reeta Metta, Heekyong Park, David Wang, Michael Mendis, Martin Rees (+2 others)
2021 JAMIA Journal of the American Medical Informatics Association  
Results As of July 2021, there are 125 645 consented patients enrolled in the MGB Biobank. 88 527 (70.5%) have a biospecimen, 55 121 (43.9%) have completed the health information survey, 43 552 (34.7%)  ...  The data are made readily available to investigators in a data portal where they can easily construct and export customized datasets for analysis.  ...  Electronic health records 124 760 (99%) 3 811 544 (100%) - Health information survey 55 121 (44%) - - Genomic data 43 552 (35%) - - Biospecimens 88 527 (71%) - - a N (%) or median (IQR). b Other patients  ... 
doi:10.1093/jamia/ocab264 pmid:34849976 pmcid:PMC8922162 fatcat:oprsltea35fr3lxa6a76u5skri

Survey design and analysis considerations when utilizing misclassified sampling strata

Aya A. Mitani, Nathaniel D. Mercaldo, Sebastien Haneuse, Jonathan S. Schildcrout
2021 BMC Medical Research Methodology  
In order to enrich the study sample with racial and ethnic minorities, disproportionate stratified sampling was implemented with strata defined by electronic health records (EHR) that are known to be inaccurate  ...  Background A large multi-center survey was conducted to understand patients' perspectives on biobank study participation with particular focus on racial and ethnic minorities.  ...  Acknowledgements We would like to thank the referees for their invaluable input that improved the quality of this manuscript.  ... 
doi:10.1186/s12874-021-01332-8 pmid:34247586 pmcid:PMC8273975 fatcat:csntad6ppzerzba5ttthvvxfxa

The Seattle Flu Study: a multi-arm community-based prospective study protocol for assessing influenza prevalence, transmission, and genomic epidemiology [article]

Helen Y. Chu, Michael Boeckh, Janet A. Englund, Michael Famulare, Barry R. Lutz, Deborah A Nickerson, Mark J. Rieder, Lea M Starita, Amanda Adler, Elisabeth Brandstetter, Chris D. Frazar, Peter D. Han (+14 others)
2020 medRxiv   pre-print
Samples are tested using a multiplex molecular assay, and influenza whole genome sequencing is performed for samples with influenza detected.  ...  The objective of this study is to use data gathered simultaneously from community and hospital sites to develop a model of how influenza enters and spreads in a population. Methods and Analysis.  ...  In the US Flu VE Network, patients seeking ambulatory care for ARI are prospectively identified and recruited into the study, with collection of clinical data and a nasal swab.  ... 
doi:10.1101/2020.03.02.20029595 fatcat:glua4uktrrasdm4ij3egy7us2e

Public Health Surveillance of Low-Frequency Populations

Elena M. Andresen, Paula H. Diehr, Douglas A. Luke
2004 Annual Review of Public Health  
We review problems in using existing data and collecting new data, especially from nonprobability samples.  ...  Our recommendations are based, in part, on a symposium held in Missouri with the collaboration of state health agency, community, and academic research participants.  ...  Publicly available sampling frames and lists A number of other combinations of sampling frames and "enriched" sampling lists have also been used and compared.  ... 
doi:10.1146/annurev.publhealth.25.101802.123111 pmid:15015911 fatcat:qhpiuelwqvathlr6ui2fmrnur4

A Review of Data Quality Assessment Methods for Public Health Information Systems

Hong Chen, David Hailey, Ning Wang, Ping Yu
2014 International Journal of Environmental Research and Public Health  
High quality data and effective data quality assessment are required for accurately evaluating the impact of public health interventions and measuring public health outcomes.  ...  Completeness, accuracy, and timeliness were the three most-used attributes among a total of 49 attributes of data quality.  ...  of sampled data, a special record linkage, or a patient interview Calculating the percentage of blank or unknown responses to items on recording forms, reviewing sampled data, conducting record linkage  ... 
doi:10.3390/ijerph110505170 pmid:24830450 pmcid:PMC4053886 fatcat:c5ecxupi3jdjhdvczuh4im4igq

Adaptation and early implementation of the PREdiction model for gene mutations (PREMM5™) for lynch syndrome risk assessment in a diverse population

Kathleen F. Mittendorf, Chinedu Ukaegbu, Marian J. Gilmore, Nangel M. Lindberg, Tia L. Kauffman, Donna J. Eubanks, Elizabeth Shuster, Jake Allen, Carmit McMullen, Heather Spencer Feigelson, Katherine P. Anderson, Michael C. Leo (+6 others)
2021 Familial Cancer  
We report on preliminary findings based on the first 500 individuals exposed to the adapted application in a primary care population enriched for low-literacy and low-resource patients.  ...  electronic application through an iterative development process involving expert and patient stakeholders.  ...  Chris Whitebirch) and genetic counselors (Brad Rolf and Laura Amendola) who collected data for this work, and the members of the English and Spanish PAC, who provided invaluable insight for the risk assessment  ... 
doi:10.1007/s10689-021-00243-3 pmid:33754278 pmcid:PMC8458476 fatcat:43x2dnli25hcrgxifl36nejmke
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