PDF(Pubmed)
Abstract：
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.
摘要：
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TBI患者预后的数据。这种方法的核心是数据字典；然而，迄今为止,还没有对定义和开发数据词典的方法进行系统评价.这项快速的系统评价旨在确定和表征设计数据词典的方法，以收集患有神经系统疾病的人的结果或变量。数据库搜索从开始到2021年10月进行。根据设定的标准分两个阶段筛选记录，以确定定义神经系统疾病数据词典的方法(国际疾病分类，第11次修订：08、22和23）。提取标准化数据。通过对随机25％的记录进行独立审查，在每个阶段检查过程。必要时通过讨论达成了共识。在29种神经系统疾病中确定了39项举措。没有确定用于定义数据字典的单一已建立或推荐的方法。九项举措进行了系统审查，以在实施共识进程之前整理信息。向最终用户咨询了37项举措。咨询方法是“圆桌会议”讨论（n=30）；有促进（n=16）；这是迭代（n=27）；并经常亲自进行（n=27）。研究人员利益相关者参与了25年的所有计划和临床医生。重要的是,只有六项举措涉及有TBI生活经验的人，四名涉及护理人员。定义数据字典的方法是可变的，报告是稀疏的。我们的发现对AUS-TBI具有指导意义，可用于进一步开发定义数据词典的方法。
