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Synergies between centralized and federated approaches to data quality: a report from the national COVID cohort collaborative

OBJECTIVE: In response to COVID-19, the informatics community united to aggregate as much clinical data as possible to characterize this new disease and reduce its impact through collaborative analytics. The National COVID Cohort Collaborative (N3C) is now the largest publicly available HIPAA limite...

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Autores principales: Pfaff, Emily R, Girvin, Andrew T, Gabriel, Davera L, Kostka, Kristin, Morris, Michele, Palchuk, Matvey B, Lehmann, Harold P, Amor, Benjamin, Bissell, Mark, Bradwell, Katie R, Gold, Sigfried, Hong, Stephanie S, Loomba, Johanna, Manna, Amin, McMurry, Julie A, Niehaus, Emily, Qureshi, Nabeel, Walden, Anita, Zhang, Xiaohan Tanner, Zhu, Richard L, Moffitt, Richard A, Haendel, Melissa A, Chute, Christopher G, Adams, William G, Al-Shukri, Shaymaa, Anzalone, Alfred, Baghal, Ahmad, Bennett, Tellen D, Bernstam, Elmer V, Bissell, Mark M, Bush, Brian, Campion, Thomas R, Castro, Victor, Chang, Jack, Chaudhari, Deepa D, Chen, Wenjin, Chu, San, Cimino, James J, Crandall, Keith A, Crooks, Mark, Davies, Sara J Deakyne, DiPalazzo, John, Dorr, David, Eckrich, Dan, Eltinge, Sarah E, Fort, Daniel G, Golovko, George, Gupta, Snehil, Hajagos, Janos G, Hanauer, David A, Harnett, Brett M, Horswell, Ronald, Huang, Nancy, Johnson, Steven G, Kahn, Michael, Khanipov, Kamil, Kieler, Curtis, Luzuriaga, Katherine Ruiz De, Maidlow, Sarah, Martinez, Ashley, Mathew, Jomol, McClay, James C, McMahan, Gabriel, Melancon, Brian, Meystre, Stephane, Miele, Lucio, Morizono, Hiroki, Pablo, Ray, Patel, Lav, Phuong, Jimmy, Popham, Daniel J, Pulgarin, Claudia, Santos, Carlos, Sarkar, Indra Neil, Sazo, Nancy, Setoguchi, Soko, Soby, Selvin, Surampalli, Sirisha, Suver, Christine, Vangala, Uma Maheswara Reddy, Visweswaran, Shyam, von Oehsen, James, Walters, Kellie M, Wiley, Laura, Williams, David A, Zai, Adrian
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8500110/
https://www.ncbi.nlm.nih.gov/pubmed/34590684
http://dx.doi.org/10.1093/jamia/ocab217
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author Pfaff, Emily R
Girvin, Andrew T
Gabriel, Davera L
Kostka, Kristin
Morris, Michele
Palchuk, Matvey B
Lehmann, Harold P
Amor, Benjamin
Bissell, Mark
Bradwell, Katie R
Gold, Sigfried
Hong, Stephanie S
Loomba, Johanna
Manna, Amin
McMurry, Julie A
Niehaus, Emily
Qureshi, Nabeel
Walden, Anita
Zhang, Xiaohan Tanner
Zhu, Richard L
Moffitt, Richard A
Haendel, Melissa A
Chute, Christopher G
Adams, William G
Al-Shukri, Shaymaa
Anzalone, Alfred
Baghal, Ahmad
Bennett, Tellen D
Bernstam, Elmer V
Bernstam, Elmer V
Bissell, Mark M
Bush, Brian
Campion, Thomas R
Castro, Victor
Chang, Jack
Chaudhari, Deepa D
Chen, Wenjin
Chu, San
Cimino, James J
Crandall, Keith A
Crooks, Mark
Davies, Sara J Deakyne
DiPalazzo, John
Dorr, David
Eckrich, Dan
Eltinge, Sarah E
Fort, Daniel G
Golovko, George
Gupta, Snehil
Haendel, Melissa A
Hajagos, Janos G
Hanauer, David A
Harnett, Brett M
Horswell, Ronald
Huang, Nancy
Johnson, Steven G
Kahn, Michael
Khanipov, Kamil
Kieler, Curtis
Luzuriaga, Katherine Ruiz De
Maidlow, Sarah
Martinez, Ashley
Mathew, Jomol
McClay, James C
McMahan, Gabriel
Melancon, Brian
Meystre, Stephane
Miele, Lucio
Morizono, Hiroki
Pablo, Ray
Patel, Lav
Phuong, Jimmy
Popham, Daniel J
Pulgarin, Claudia
Santos, Carlos
Sarkar, Indra Neil
Sazo, Nancy
Setoguchi, Soko
Soby, Selvin
Surampalli, Sirisha
Suver, Christine
Vangala, Uma Maheswara Reddy
Visweswaran, Shyam
von Oehsen, James
Walters, Kellie M
Wiley, Laura
Williams, David A
Zai, Adrian
author_facet Pfaff, Emily R
Girvin, Andrew T
Gabriel, Davera L
Kostka, Kristin
Morris, Michele
Palchuk, Matvey B
Lehmann, Harold P
Amor, Benjamin
Bissell, Mark
Bradwell, Katie R
Gold, Sigfried
Hong, Stephanie S
Loomba, Johanna
Manna, Amin
McMurry, Julie A
Niehaus, Emily
Qureshi, Nabeel
Walden, Anita
Zhang, Xiaohan Tanner
Zhu, Richard L
Moffitt, Richard A
Haendel, Melissa A
Chute, Christopher G
Adams, William G
Al-Shukri, Shaymaa
Anzalone, Alfred
Baghal, Ahmad
Bennett, Tellen D
Bernstam, Elmer V
Bernstam, Elmer V
Bissell, Mark M
Bush, Brian
Campion, Thomas R
Castro, Victor
Chang, Jack
Chaudhari, Deepa D
Chen, Wenjin
Chu, San
Cimino, James J
Crandall, Keith A
Crooks, Mark
Davies, Sara J Deakyne
DiPalazzo, John
Dorr, David
Eckrich, Dan
Eltinge, Sarah E
Fort, Daniel G
Golovko, George
Gupta, Snehil
Haendel, Melissa A
Hajagos, Janos G
Hanauer, David A
Harnett, Brett M
Horswell, Ronald
Huang, Nancy
Johnson, Steven G
Kahn, Michael
Khanipov, Kamil
Kieler, Curtis
Luzuriaga, Katherine Ruiz De
Maidlow, Sarah
Martinez, Ashley
Mathew, Jomol
McClay, James C
McMahan, Gabriel
Melancon, Brian
Meystre, Stephane
Miele, Lucio
Morizono, Hiroki
Pablo, Ray
Patel, Lav
Phuong, Jimmy
Popham, Daniel J
Pulgarin, Claudia
Santos, Carlos
Sarkar, Indra Neil
Sazo, Nancy
Setoguchi, Soko
Soby, Selvin
Surampalli, Sirisha
Suver, Christine
Vangala, Uma Maheswara Reddy
Visweswaran, Shyam
von Oehsen, James
Walters, Kellie M
Wiley, Laura
Williams, David A
Zai, Adrian
author_sort Pfaff, Emily R
collection PubMed
description OBJECTIVE: In response to COVID-19, the informatics community united to aggregate as much clinical data as possible to characterize this new disease and reduce its impact through collaborative analytics. The National COVID Cohort Collaborative (N3C) is now the largest publicly available HIPAA limited dataset in US history with over 6.4 million patients and is a testament to a partnership of over 100 organizations. MATERIALS AND METHODS: We developed a pipeline for ingesting, harmonizing, and centralizing data from 56 contributing data partners using 4 federated Common Data Models. N3C data quality (DQ) review involves both automated and manual procedures. In the process, several DQ heuristics were discovered in our centralized context, both within the pipeline and during downstream project-based analysis. Feedback to the sites led to many local and centralized DQ improvements. RESULTS: Beyond well-recognized DQ findings, we discovered 15 heuristics relating to source Common Data Model conformance, demographics, COVID tests, conditions, encounters, measurements, observations, coding completeness, and fitness for use. Of 56 sites, 37 sites (66%) demonstrated issues through these heuristics. These 37 sites demonstrated improvement after receiving feedback. DISCUSSION: We encountered site-to-site differences in DQ which would have been challenging to discover using federated checks alone. We have demonstrated that centralized DQ benchmarking reveals unique opportunities for DQ improvement that will support improved research analytics locally and in aggregate. CONCLUSION: By combining rapid, continual assessment of DQ with a large volume of multisite data, it is possible to support more nuanced scientific questions with the scale and rigor that they require.
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spelling pubmed-85001102021-10-08 Synergies between centralized and federated approaches to data quality: a report from the national COVID cohort collaborative Pfaff, Emily R Girvin, Andrew T Gabriel, Davera L Kostka, Kristin Morris, Michele Palchuk, Matvey B Lehmann, Harold P Amor, Benjamin Bissell, Mark Bradwell, Katie R Gold, Sigfried Hong, Stephanie S Loomba, Johanna Manna, Amin McMurry, Julie A Niehaus, Emily Qureshi, Nabeel Walden, Anita Zhang, Xiaohan Tanner Zhu, Richard L Moffitt, Richard A Haendel, Melissa A Chute, Christopher G Adams, William G Al-Shukri, Shaymaa Anzalone, Alfred Baghal, Ahmad Bennett, Tellen D Bernstam, Elmer V Bernstam, Elmer V Bissell, Mark M Bush, Brian Campion, Thomas R Castro, Victor Chang, Jack Chaudhari, Deepa D Chen, Wenjin Chu, San Cimino, James J Crandall, Keith A Crooks, Mark Davies, Sara J Deakyne DiPalazzo, John Dorr, David Eckrich, Dan Eltinge, Sarah E Fort, Daniel G Golovko, George Gupta, Snehil Haendel, Melissa A Hajagos, Janos G Hanauer, David A Harnett, Brett M Horswell, Ronald Huang, Nancy Johnson, Steven G Kahn, Michael Khanipov, Kamil Kieler, Curtis Luzuriaga, Katherine Ruiz De Maidlow, Sarah Martinez, Ashley Mathew, Jomol McClay, James C McMahan, Gabriel Melancon, Brian Meystre, Stephane Miele, Lucio Morizono, Hiroki Pablo, Ray Patel, Lav Phuong, Jimmy Popham, Daniel J Pulgarin, Claudia Santos, Carlos Sarkar, Indra Neil Sazo, Nancy Setoguchi, Soko Soby, Selvin Surampalli, Sirisha Suver, Christine Vangala, Uma Maheswara Reddy Visweswaran, Shyam von Oehsen, James Walters, Kellie M Wiley, Laura Williams, David A Zai, Adrian J Am Med Inform Assoc Research and Applications OBJECTIVE: In response to COVID-19, the informatics community united to aggregate as much clinical data as possible to characterize this new disease and reduce its impact through collaborative analytics. The National COVID Cohort Collaborative (N3C) is now the largest publicly available HIPAA limited dataset in US history with over 6.4 million patients and is a testament to a partnership of over 100 organizations. MATERIALS AND METHODS: We developed a pipeline for ingesting, harmonizing, and centralizing data from 56 contributing data partners using 4 federated Common Data Models. N3C data quality (DQ) review involves both automated and manual procedures. In the process, several DQ heuristics were discovered in our centralized context, both within the pipeline and during downstream project-based analysis. Feedback to the sites led to many local and centralized DQ improvements. RESULTS: Beyond well-recognized DQ findings, we discovered 15 heuristics relating to source Common Data Model conformance, demographics, COVID tests, conditions, encounters, measurements, observations, coding completeness, and fitness for use. Of 56 sites, 37 sites (66%) demonstrated issues through these heuristics. These 37 sites demonstrated improvement after receiving feedback. DISCUSSION: We encountered site-to-site differences in DQ which would have been challenging to discover using federated checks alone. We have demonstrated that centralized DQ benchmarking reveals unique opportunities for DQ improvement that will support improved research analytics locally and in aggregate. CONCLUSION: By combining rapid, continual assessment of DQ with a large volume of multisite data, it is possible to support more nuanced scientific questions with the scale and rigor that they require. Oxford University Press 2021-11-02 /pmc/articles/PMC8500110/ /pubmed/34590684 http://dx.doi.org/10.1093/jamia/ocab217 Text en © The Author(s) 2021. Published by Oxford University Press on behalf of the American Medical Informatics Association. https://creativecommons.org/licenses/by-nc/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (https://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com
spellingShingle Research and Applications
Pfaff, Emily R
Girvin, Andrew T
Gabriel, Davera L
Kostka, Kristin
Morris, Michele
Palchuk, Matvey B
Lehmann, Harold P
Amor, Benjamin
Bissell, Mark
Bradwell, Katie R
Gold, Sigfried
Hong, Stephanie S
Loomba, Johanna
Manna, Amin
McMurry, Julie A
Niehaus, Emily
Qureshi, Nabeel
Walden, Anita
Zhang, Xiaohan Tanner
Zhu, Richard L
Moffitt, Richard A
Haendel, Melissa A
Chute, Christopher G
Adams, William G
Al-Shukri, Shaymaa
Anzalone, Alfred
Baghal, Ahmad
Bennett, Tellen D
Bernstam, Elmer V
Bernstam, Elmer V
Bissell, Mark M
Bush, Brian
Campion, Thomas R
Castro, Victor
Chang, Jack
Chaudhari, Deepa D
Chen, Wenjin
Chu, San
Cimino, James J
Crandall, Keith A
Crooks, Mark
Davies, Sara J Deakyne
DiPalazzo, John
Dorr, David
Eckrich, Dan
Eltinge, Sarah E
Fort, Daniel G
Golovko, George
Gupta, Snehil
Haendel, Melissa A
Hajagos, Janos G
Hanauer, David A
Harnett, Brett M
Horswell, Ronald
Huang, Nancy
Johnson, Steven G
Kahn, Michael
Khanipov, Kamil
Kieler, Curtis
Luzuriaga, Katherine Ruiz De
Maidlow, Sarah
Martinez, Ashley
Mathew, Jomol
McClay, James C
McMahan, Gabriel
Melancon, Brian
Meystre, Stephane
Miele, Lucio
Morizono, Hiroki
Pablo, Ray
Patel, Lav
Phuong, Jimmy
Popham, Daniel J
Pulgarin, Claudia
Santos, Carlos
Sarkar, Indra Neil
Sazo, Nancy
Setoguchi, Soko
Soby, Selvin
Surampalli, Sirisha
Suver, Christine
Vangala, Uma Maheswara Reddy
Visweswaran, Shyam
von Oehsen, James
Walters, Kellie M
Wiley, Laura
Williams, David A
Zai, Adrian
Synergies between centralized and federated approaches to data quality: a report from the national COVID cohort collaborative
title Synergies between centralized and federated approaches to data quality: a report from the national COVID cohort collaborative
title_full Synergies between centralized and federated approaches to data quality: a report from the national COVID cohort collaborative
title_fullStr Synergies between centralized and federated approaches to data quality: a report from the national COVID cohort collaborative
title_full_unstemmed Synergies between centralized and federated approaches to data quality: a report from the national COVID cohort collaborative
title_short Synergies between centralized and federated approaches to data quality: a report from the national COVID cohort collaborative
title_sort synergies between centralized and federated approaches to data quality: a report from the national covid cohort collaborative
topic Research and Applications
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8500110/
https://www.ncbi.nlm.nih.gov/pubmed/34590684
http://dx.doi.org/10.1093/jamia/ocab217
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