TY - JOUR
T1 - Challenges to the Standardization of Trauma Data Collection in Burn, Traumatic Brain Injury, Spinal Cord Injury, and Other Trauma Populations
T2 - A Call for Common Data Elements for Acute and Longitudinal Trauma Databases
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.
N1 - Publisher Copyright:
© 2018 American Congress of Rehabilitation Medicine
PY - 2019/5
Y1 - 2019/5
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.
AB - 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.
KW - Common data elements
KW - Database
KW - Rehabilitation
KW - Rehabilitation research
UR - http://www.scopus.com/inward/record.url?scp=85057985763&partnerID=8YFLogxK
U2 - 10.1016/j.apmr.2018.10.004
DO - 10.1016/j.apmr.2018.10.004
M3 - Article
C2 - 31030731
AN - SCOPUS:85057985763
SN - 0003-9993
VL - 100
SP - 891
EP - 898
JO - Archives of Physical Medicine and Rehabilitation
JF - Archives of Physical Medicine and Rehabilitation
IS - 5
ER -