The Australian Traumatic Brain Injury Initiative: Statement of Working Principles and Rapid Review of Methods to Define Data Dictionaries for Neurological Conditions
The Australian Traumatic Brain Injury Initiative (AUS-TBI) aims to develop a health informatics approach to collect data predictive of outcomes for persons with moderate-severe TBI across Australia. Central to this approach is a data dictionary; however, no systematic reviews of methods to define an...
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| Format: | Article |
| Language: | English |
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Mary Ann Liebert
2024-11-01
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| Series: | Neurotrauma Reports |
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| Online Access: | https://www.liebertpub.com/doi/10.1089/neur.2023.0116 |
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| author | Matthew K. Bagg Amelia J. Hicks Sarah C. Hellewell Jennie L. Ponsford Natasha A. Lannin Terence J. O'Brien Peter A. Cameron D. Jamie Cooper Nick Rushworth Belinda J. Gabbe Melinda Fitzgerald |
| author_facet | Matthew K. Bagg Amelia J. Hicks Sarah C. Hellewell Jennie L. Ponsford Natasha A. Lannin Terence J. O'Brien Peter A. Cameron D. Jamie Cooper Nick Rushworth Belinda J. Gabbe Melinda Fitzgerald |
| author_sort | Matthew K. Bagg |
| collection | DOAJ |
| description | The Australian Traumatic Brain Injury Initiative (AUS-TBI) aims to develop a health informatics approach to collect data predictive of outcomes for persons with moderate-severe TBI across Australia. Central to this approach is a data dictionary; however, no systematic reviews of methods to define and develop data dictionaries exist to-date. This rapid systematic review aimed to identify and characterize methods for designing data dictionaries to collect outcomes or variables in persons with neurological conditions. Database searches were conducted from inception through October 2021. Records were screened in two stages against set criteria to identify methods to define data dictionaries for neurological conditions (International Classification of Diseases, 11th Revision: 08, 22, and 23). Standardized data were extracted. Processes were checked at each stage by independent review of a random 25% of records. Consensus was reached through discussion where necessary. Thirty-nine initiatives were identified across 29 neurological conditions. No single established or recommended method for defining a data dictionary was identified. Nine initiatives conducted systematic reviews to collate information before implementing a consensus process. Thirty-seven initiatives consulted with end-users. Methods of consultation were “roundtable” discussion (n = 30); with facilitation (n = 16); that was iterative (n = 27); and frequently conducted in-person (n = 27). Researcher stakeholders were involved in all initiatives and clinicians in 25. Importantly, only six initiatives involved persons with lived experience of TBI and four involved carers. Methods for defining data dictionaries were variable and reporting is sparse. Our findings are instructive for AUS-TBI and can be used to further development of methods for defining data dictionaries. |
| format | Article |
| id | doaj-art-127a6aed51c84dcca3f74413f47d1b1d |
| institution | DOAJ |
| issn | 2689-288X |
| language | English |
| publishDate | 2024-11-01 |
| publisher | Mary Ann Liebert |
| record_format | Article |
| series | Neurotrauma Reports |
| spelling | doaj-art-127a6aed51c84dcca3f74413f47d1b1d2025-08-20T02:59:07ZengMary Ann LiebertNeurotrauma Reports2689-288X2024-11-015142444710.1089/neur.2023.0116The Australian Traumatic Brain Injury Initiative: Statement of Working Principles and Rapid Review of Methods to Define Data Dictionaries for Neurological ConditionsMatthew K. Bagg0Amelia J. Hicks1Sarah C. Hellewell2Jennie L. Ponsford3Natasha A. Lannin4Terence J. O'Brien5Peter A. Cameron6D. Jamie Cooper7Nick Rushworth8Belinda J. Gabbe9Melinda Fitzgerald10Curtin Health Innovation Research Institute, Faculty of Health Sciences, Curtin University, Bentley, Western Australia, Australia.School of Psychological Sciences, Monash University, Melbourne, Victoria, Australia.Curtin Health Innovation Research Institute, Faculty of Health Sciences, Curtin University, Bentley, Western Australia, Australia.School of Psychological Sciences, Monash University, Melbourne, Victoria, Australia.Department of Neuroscience, Central Clinical School, Monash University, Melbourne, Victoria, Australia.Department of Neuroscience, Central Clinical School, Monash University, Melbourne, Victoria, Australia.National Trauma Research Institute, Melbourne, Victoria, Australia.School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.Brain Injury Australia, Sydney, New South Wales, Australia.School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.Curtin Health Innovation Research Institute, Faculty of Health Sciences, Curtin University, Bentley, Western Australia, Australia.The Australian Traumatic Brain Injury Initiative (AUS-TBI) aims to develop a health informatics approach to collect data predictive of outcomes for persons with moderate-severe TBI across Australia. Central to this approach is a data dictionary; however, no systematic reviews of methods to define and develop data dictionaries exist to-date. This rapid systematic review aimed to identify and characterize methods for designing data dictionaries to collect outcomes or variables in persons with neurological conditions. Database searches were conducted from inception through October 2021. Records were screened in two stages against set criteria to identify methods to define data dictionaries for neurological conditions (International Classification of Diseases, 11th Revision: 08, 22, and 23). Standardized data were extracted. Processes were checked at each stage by independent review of a random 25% of records. Consensus was reached through discussion where necessary. Thirty-nine initiatives were identified across 29 neurological conditions. No single established or recommended method for defining a data dictionary was identified. Nine initiatives conducted systematic reviews to collate information before implementing a consensus process. Thirty-seven initiatives consulted with end-users. Methods of consultation were “roundtable” discussion (n = 30); with facilitation (n = 16); that was iterative (n = 27); and frequently conducted in-person (n = 27). Researcher stakeholders were involved in all initiatives and clinicians in 25. Importantly, only six initiatives involved persons with lived experience of TBI and four involved carers. Methods for defining data dictionaries were variable and reporting is sparse. Our findings are instructive for AUS-TBI and can be used to further development of methods for defining data dictionaries.https://www.liebertpub.com/doi/10.1089/neur.2023.0116brain injuriescommon data elementsneurologysystematic review [publication type]traumatic |
| spellingShingle | Matthew K. Bagg Amelia J. Hicks Sarah C. Hellewell Jennie L. Ponsford Natasha A. Lannin Terence J. O'Brien Peter A. Cameron D. Jamie Cooper Nick Rushworth Belinda J. Gabbe Melinda Fitzgerald The Australian Traumatic Brain Injury Initiative: Statement of Working Principles and Rapid Review of Methods to Define Data Dictionaries for Neurological Conditions Neurotrauma Reports brain injuries common data elements neurology systematic review [publication type] traumatic |
| title | The Australian Traumatic Brain Injury Initiative: Statement of Working Principles and Rapid Review of Methods to Define Data Dictionaries for Neurological Conditions |
| title_full | The Australian Traumatic Brain Injury Initiative: Statement of Working Principles and Rapid Review of Methods to Define Data Dictionaries for Neurological Conditions |
| title_fullStr | The Australian Traumatic Brain Injury Initiative: Statement of Working Principles and Rapid Review of Methods to Define Data Dictionaries for Neurological Conditions |
| title_full_unstemmed | The Australian Traumatic Brain Injury Initiative: Statement of Working Principles and Rapid Review of Methods to Define Data Dictionaries for Neurological Conditions |
| title_short | The Australian Traumatic Brain Injury Initiative: Statement of Working Principles and Rapid Review of Methods to Define Data Dictionaries for Neurological Conditions |
| title_sort | australian traumatic brain injury initiative statement of working principles and rapid review of methods to define data dictionaries for neurological conditions |
| topic | brain injuries common data elements neurology systematic review [publication type] traumatic |
| url | https://www.liebertpub.com/doi/10.1089/neur.2023.0116 |
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