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A federated EHR network data completeness tracking system
OBJECTIVE: The study sought to design, pilot, and evaluate a federated data completeness tracking system (CTX) for assessing completeness in research data extracted from electronic health record data across the Accessible Research Commons for Health (ARCH) Clinical Data Research Network. MATERIALS A...
Autores principales: | , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Oxford University Press
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6586954/ https://www.ncbi.nlm.nih.gov/pubmed/30925587 http://dx.doi.org/10.1093/jamia/ocz014 |
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author | Estiri, Hossein Klann, Jeffrey G Weiler, Sarah R Alema-Mensah, Ernest Joseph Applegate, R Lozinski, Galina Patibandla, Nandan Wei, Kun Adams, William G Natter, Marc D Ofili, Elizabeth O Ostasiewski, Brian Quarshie, Alexander Rosenthal, Gary E Bernstam, Elmer V Mandl, Kenneth D Murphy, Shawn N |
author_facet | Estiri, Hossein Klann, Jeffrey G Weiler, Sarah R Alema-Mensah, Ernest Joseph Applegate, R Lozinski, Galina Patibandla, Nandan Wei, Kun Adams, William G Natter, Marc D Ofili, Elizabeth O Ostasiewski, Brian Quarshie, Alexander Rosenthal, Gary E Bernstam, Elmer V Mandl, Kenneth D Murphy, Shawn N |
author_sort | Estiri, Hossein |
collection | PubMed |
description | OBJECTIVE: The study sought to design, pilot, and evaluate a federated data completeness tracking system (CTX) for assessing completeness in research data extracted from electronic health record data across the Accessible Research Commons for Health (ARCH) Clinical Data Research Network. MATERIALS AND METHODS: The CTX applies a systems-based approach to design workflow and technology for assessing completeness across distributed electronic health record data repositories participating in a queryable, federated network. The CTX invokes 2 positive feedback loops that utilize open source tools (DQ(e)-c and Vue) to integrate technology and human actors in a system geared for increasing capacity and taking action. A pilot implementation of the system involved 6 ARCH partner sites between January 2017 and May 2018. RESULTS: The ARCH CTX has enabled the network to monitor and, if needed, adjust its data management processes to maintain complete datasets for secondary use. The system allows the network and its partner sites to profile data completeness both at the network and partner site levels. Interactive visualizations presenting the current state of completeness in the context of the entire network as well as changes in completeness across time were valued among the CTX user base. DISCUSSION: Distributed clinical data networks are complex systems. Top-down approaches that solely rely on technology to report data completeness may be necessary but not sufficient for improving completeness (and quality) of data in large-scale clinical data networks. Improving and maintaining complete (high-quality) data in such complex environments entails sociotechnical systems that exploit technology and empower human actors to engage in the process of high-quality data curating. CONCLUSIONS: The CTX has increased the network’s capacity to rapidly identify data completeness issues and empowered ARCH partner sites to get involved in improving the completeness of respective data in their repositories. |
format | Online Article Text |
id | pubmed-6586954 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | Oxford University Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-65869542019-06-25 A federated EHR network data completeness tracking system Estiri, Hossein Klann, Jeffrey G Weiler, Sarah R Alema-Mensah, Ernest Joseph Applegate, R Lozinski, Galina Patibandla, Nandan Wei, Kun Adams, William G Natter, Marc D Ofili, Elizabeth O Ostasiewski, Brian Quarshie, Alexander Rosenthal, Gary E Bernstam, Elmer V Mandl, Kenneth D Murphy, Shawn N J Am Med Inform Assoc Research and Applications OBJECTIVE: The study sought to design, pilot, and evaluate a federated data completeness tracking system (CTX) for assessing completeness in research data extracted from electronic health record data across the Accessible Research Commons for Health (ARCH) Clinical Data Research Network. MATERIALS AND METHODS: The CTX applies a systems-based approach to design workflow and technology for assessing completeness across distributed electronic health record data repositories participating in a queryable, federated network. The CTX invokes 2 positive feedback loops that utilize open source tools (DQ(e)-c and Vue) to integrate technology and human actors in a system geared for increasing capacity and taking action. A pilot implementation of the system involved 6 ARCH partner sites between January 2017 and May 2018. RESULTS: The ARCH CTX has enabled the network to monitor and, if needed, adjust its data management processes to maintain complete datasets for secondary use. The system allows the network and its partner sites to profile data completeness both at the network and partner site levels. Interactive visualizations presenting the current state of completeness in the context of the entire network as well as changes in completeness across time were valued among the CTX user base. DISCUSSION: Distributed clinical data networks are complex systems. Top-down approaches that solely rely on technology to report data completeness may be necessary but not sufficient for improving completeness (and quality) of data in large-scale clinical data networks. Improving and maintaining complete (high-quality) data in such complex environments entails sociotechnical systems that exploit technology and empower human actors to engage in the process of high-quality data curating. CONCLUSIONS: The CTX has increased the network’s capacity to rapidly identify data completeness issues and empowered ARCH partner sites to get involved in improving the completeness of respective data in their repositories. Oxford University Press 2019-03-29 /pmc/articles/PMC6586954/ /pubmed/30925587 http://dx.doi.org/10.1093/jamia/ocz014 Text en © The Author(s) 2019. Published by Oxford University Press on behalf of the American Medical Informatics Association. http://creativecommons.org/licenses/by-nc-nd/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs licence (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial reproduction and distribution of the work, in any medium, provided the original work is not altered or transformed in any way, and that the work is properly cited. For commercial re-use, please contactjournals.permissions@oup.com |
spellingShingle | Research and Applications Estiri, Hossein Klann, Jeffrey G Weiler, Sarah R Alema-Mensah, Ernest Joseph Applegate, R Lozinski, Galina Patibandla, Nandan Wei, Kun Adams, William G Natter, Marc D Ofili, Elizabeth O Ostasiewski, Brian Quarshie, Alexander Rosenthal, Gary E Bernstam, Elmer V Mandl, Kenneth D Murphy, Shawn N A federated EHR network data completeness tracking system |
title | A federated EHR network data completeness tracking system |
title_full | A federated EHR network data completeness tracking system |
title_fullStr | A federated EHR network data completeness tracking system |
title_full_unstemmed | A federated EHR network data completeness tracking system |
title_short | A federated EHR network data completeness tracking system |
title_sort | federated ehr network data completeness tracking system |
topic | Research and Applications |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6586954/ https://www.ncbi.nlm.nih.gov/pubmed/30925587 http://dx.doi.org/10.1093/jamia/ocz014 |
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