Bagg Matthew K, Hicks Amelia J, Hellewell Sarah C, Ponsford Jennie L, Lannin Natasha A, O'Brien Terence J, Cameron Peter A, Cooper D Jamie, Rushworth Nick, Gabbe Belinda J, Fitzgerald Melinda
Curtin Health Innovation Research Institute, Faculty of Health Sciences, Curtin University, Bentley, Western Australia, Australia.
Perron Institute for Neurological and Translational Science, Nedlands, Western Australia, Australia.
Neurotrauma Rep. 2024 Apr 11;5(1):424-447. doi: 10.1089/neur.2023.0116. eCollection 2024.
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 ( = 30); with facilitation ( = 16); that was iterative ( = 27); and frequently conducted in-person ( = 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.
澳大利亚创伤性脑损伤倡议（AUS-TBI）旨在开发一种健康信息学方法，以收集预测澳大利亚中重度创伤性脑损伤患者预后的数据。这种方法的核心是一个数据字典；然而，迄今为止，尚无关于定义和开发数据字典方法的系统评价。这项快速系统评价旨在识别和描述设计数据字典以收集神经疾病患者预后或变量的方法。从数据库建立至2021年10月进行检索。根据既定标准分两个阶段筛选记录，以识别为神经疾病（《国际疾病分类》第11版：08、22和23）定义数据字典的方法。提取标准化数据。在每个阶段，通过对25%的记录进行独立随机审查来检查流程。必要时通过讨论达成共识。在29种神经疾病中确定了39项倡议。未发现单一既定或推荐的定义数据字典的方法。9项倡议在实施共识流程之前进行了系统评价以整理信息。37项倡议咨询了最终用户。咨询方法为“圆桌”讨论（n=30）；有促进作用（n=16）；是迭代的（n=27）；且经常面对面进行（n=27）。研究人员利益相关者参与了所有倡议，25项倡议中有临床医生参与。重要的是，只有6项倡议涉及有创伤性脑损伤生活经历的人，4项倡议涉及护理人员。定义数据字典的方法各不相同，报告也很少。我们的研究结果对AUS-TBI具有指导意义，可用于进一步开发定义数据字典的方法。
