Challenges to the Standardization of Trauma Data Collection in Burn, Traumatic Brain Injury, Spinal Cord Injury, and Other Trauma Populations: A Call for Common Data Elements for Acute and Longitudinal Trauma Databases

Laura C. Simko, Liang Chen, Dagmar Amtmann, Nicole Gibran, David Herndon, Karen Kowalske, A. Cate Miller, Eileen Bulger, Ryan Friedman, Audrey Wolfe, Kevin K. Chung, Michael Mosier, James Jeng, Joseph Giacino, Ross Zafonte, Lewis E. Kazis, Jeffrey C. Schneider, Colleen M. Ryan

Research output: Contribution to journalArticle

Abstract

Objective: Common data elements (CDEs) promote data sharing, standardization, and uniform data collection, which facilitate meta-analyses and comparisons of studies. Currently, there is no set of CDEs for all trauma populations, but their creation would allow researchers to leverage existing databases to maximize research on trauma outcomes. The purpose of this study is to assess the extent of common data collection among 5 trauma databases. Design: The data dictionaries of 5 trauma databases were examined to determine the extent of common data collection. Databases included 2 acute care databases (American Burn Association's National Burn Data Standard and American College of Surgeons’ National Trauma Data Standard) and 3 longitudinal trauma databases (Burn, Traumatic Brain Injury, Spinal Cord Injury Model System National Databases). Data elements and data values were compared across the databases. Quantitative and qualitative variations in the data were identified to highlight meaningful differences between datasets. Setting: N/A. Participants: N/A. Interventions: N/A. Main Outcome Measures: N/A. Results: Of the 30 data elements examined, 14 (47%) were present in all 5 databases. Another 9 (30%) elements were present in 4 of the 5 databases. The number of elements present in each database ranged from 23 (77%) to 26 (86%). There were inconsistencies in the data values across the databases. Twelve of the 14 data elements present in all 5 databases exhibited differences in data values. Conclusions: This study demonstrates inconsistencies in the documentation of data elements in 5 common trauma databases. These discrepancies are a barrier to database harmonization and to maximizing the use of these databases through linking, pooling, and comparing data. A collaborative effort is required to develop a standardized set of elements for trauma research.

Original languageEnglish (US)
JournalArchives of Physical Medicine and Rehabilitation
DOIs
StateAccepted/In press - Jan 1 2018

Fingerprint

Spinal Cord Injuries
Databases
Wounds and Injuries
Population
Common Data Elements
Traumatic Brain Injury
Meta-Analysis
Information Dissemination
Research
Documentation

Keywords

  • Common data elements
  • Database
  • Rehabilitation
  • Rehabilitation research

ASJC Scopus subject areas

  • Physical Therapy, Sports Therapy and Rehabilitation
  • Rehabilitation

Cite this

Challenges to the Standardization of Trauma Data Collection in Burn, Traumatic Brain Injury, Spinal Cord Injury, and Other Trauma Populations : A Call for Common Data Elements for Acute and Longitudinal Trauma Databases. / Simko, Laura C.; Chen, Liang; Amtmann, Dagmar; Gibran, Nicole; Herndon, David; Kowalske, Karen; Miller, A. Cate; Bulger, Eileen; Friedman, Ryan; Wolfe, Audrey; Chung, Kevin K.; Mosier, Michael; Jeng, James; Giacino, Joseph; Zafonte, Ross; Kazis, Lewis E.; Schneider, Jeffrey C.; Ryan, Colleen M.

In: Archives of Physical Medicine and Rehabilitation, 01.01.2018.

Research output: Contribution to journalArticle

Simko, LC, Chen, L, Amtmann, D, Gibran, N, Herndon, D, Kowalske, K, Miller, AC, Bulger, E, Friedman, R, Wolfe, A, Chung, KK, Mosier, M, Jeng, J, Giacino, J, Zafonte, R, Kazis, LE, Schneider, JC & Ryan, CM 2018, 'Challenges to the Standardization of Trauma Data Collection in Burn, Traumatic Brain Injury, Spinal Cord Injury, and Other Trauma Populations: A Call for Common Data Elements for Acute and Longitudinal Trauma Databases', Archives of Physical Medicine and Rehabilitation. https://doi.org/10.1016/j.apmr.2018.10.004
Simko, Laura C. ; Chen, Liang ; Amtmann, Dagmar ; Gibran, Nicole ; Herndon, David ; Kowalske, Karen ; Miller, A. Cate ; Bulger, Eileen ; Friedman, Ryan ; Wolfe, Audrey ; Chung, Kevin K. ; Mosier, Michael ; Jeng, James ; Giacino, Joseph ; Zafonte, Ross ; Kazis, Lewis E. ; Schneider, Jeffrey C. ; Ryan, Colleen M. / Challenges to the Standardization of Trauma Data Collection in Burn, Traumatic Brain Injury, Spinal Cord Injury, and Other Trauma Populations : A Call for Common Data Elements for Acute and Longitudinal Trauma Databases. In: Archives of Physical Medicine and Rehabilitation. 2018.
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abstract = "Objective: Common data elements (CDEs) promote data sharing, standardization, and uniform data collection, which facilitate meta-analyses and comparisons of studies. Currently, there is no set of CDEs for all trauma populations, but their creation would allow researchers to leverage existing databases to maximize research on trauma outcomes. The purpose of this study is to assess the extent of common data collection among 5 trauma databases. Design: The data dictionaries of 5 trauma databases were examined to determine the extent of common data collection. Databases included 2 acute care databases (American Burn Association's National Burn Data Standard and American College of Surgeons’ National Trauma Data Standard) and 3 longitudinal trauma databases (Burn, Traumatic Brain Injury, Spinal Cord Injury Model System National Databases). Data elements and data values were compared across the databases. Quantitative and qualitative variations in the data were identified to highlight meaningful differences between datasets. Setting: N/A. Participants: N/A. Interventions: N/A. Main Outcome Measures: N/A. Results: Of the 30 data elements examined, 14 (47{\%}) were present in all 5 databases. Another 9 (30{\%}) elements were present in 4 of the 5 databases. The number of elements present in each database ranged from 23 (77{\%}) to 26 (86{\%}). There were inconsistencies in the data values across the databases. Twelve of the 14 data elements present in all 5 databases exhibited differences in data values. Conclusions: This study demonstrates inconsistencies in the documentation of data elements in 5 common trauma databases. These discrepancies are a barrier to database harmonization and to maximizing the use of these databases through linking, pooling, and comparing data. A collaborative effort is required to develop a standardized set of elements for trauma research.",
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AU - Simko, Laura C.

AU - Chen, Liang

AU - Amtmann, Dagmar

AU - Gibran, Nicole

AU - Herndon, David

AU - Kowalske, Karen

AU - Miller, A. Cate

AU - Bulger, Eileen

AU - Friedman, Ryan

AU - Wolfe, Audrey

AU - Chung, Kevin K.

AU - Mosier, Michael

AU - Jeng, James

AU - Giacino, Joseph

AU - Zafonte, Ross

AU - Kazis, Lewis E.

AU - Schneider, Jeffrey C.

AU - Ryan, Colleen M.

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N2 - Objective: Common data elements (CDEs) promote data sharing, standardization, and uniform data collection, which facilitate meta-analyses and comparisons of studies. Currently, there is no set of CDEs for all trauma populations, but their creation would allow researchers to leverage existing databases to maximize research on trauma outcomes. The purpose of this study is to assess the extent of common data collection among 5 trauma databases. Design: The data dictionaries of 5 trauma databases were examined to determine the extent of common data collection. Databases included 2 acute care databases (American Burn Association's National Burn Data Standard and American College of Surgeons’ National Trauma Data Standard) and 3 longitudinal trauma databases (Burn, Traumatic Brain Injury, Spinal Cord Injury Model System National Databases). Data elements and data values were compared across the databases. Quantitative and qualitative variations in the data were identified to highlight meaningful differences between datasets. Setting: N/A. Participants: N/A. Interventions: N/A. Main Outcome Measures: N/A. Results: Of the 30 data elements examined, 14 (47%) were present in all 5 databases. Another 9 (30%) elements were present in 4 of the 5 databases. The number of elements present in each database ranged from 23 (77%) to 26 (86%). There were inconsistencies in the data values across the databases. Twelve of the 14 data elements present in all 5 databases exhibited differences in data values. Conclusions: This study demonstrates inconsistencies in the documentation of data elements in 5 common trauma databases. These discrepancies are a barrier to database harmonization and to maximizing the use of these databases through linking, pooling, and comparing data. A collaborative effort is required to develop a standardized set of elements for trauma research.

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