Welch Brandon M, Wiley Kevin, Pflieger Lance, Achiangia Rosaline, Baker Karen, Hughes-Halbert Chanita, Morrison Heath, Schiffman Joshua, Doerr Megan
Biomedical Informatics Center, Department of Public Health Sciences, Medical University of South Carolina, Charleston, SC, USA.
Hollings Cancer Center, Medical University of South Carolina, Charleston, SC, USA.
J Genet Couns. 2018 Apr;27(2):381-391. doi: 10.1007/s10897-018-0235-7. Epub 2018 Mar 6.
Family health history (FHx) is one of the most important pieces of information available to help genetic counselors and other clinicians identify risk and prevent disease. Unfortunately, the collection of FHx from patients is often too time consuming to be done during a clinical visit. Fortunately, there are many electronic FHx tools designed to help patients gather and organize their own FHx information prior to a clinic visit. We conducted a review and analysis of electronic FHx tools to better understand what tools are available, to compare and contrast to each other, to highlight features of various tools, and to provide a foundation for future evaluation and comparisons across FHx tools. Through our analysis, we included and abstracted 17 patient-facing electronic FHx tools and explored these tools around four axes: organization information, family history collection and display, clinical data collected, and clinical workflow integration. We found a large number of differences among FHx tools, with no two the same. This paper provides a useful review for health care providers, researchers, and patient advocates interested in understanding the differences among the available patient-facing electronic FHx tools.
家族健康史(FHx)是帮助遗传咨询师和其他临床医生识别风险和预防疾病的最重要信息之一。不幸的是,从患者那里收集FHx往往非常耗时,以至于无法在临床就诊期间完成。幸运的是,有许多电子FHx工具旨在帮助患者在就诊前收集和整理自己的FHx信息。我们对电子FHx工具进行了综述和分析,以更好地了解有哪些工具可用,相互比较和对比,突出各种工具的特点,并为未来对FHx工具的评估和比较提供基础。通过我们的分析,我们纳入并提炼了17种面向患者的电子FHx工具,并围绕四个轴对这些工具进行了探索:组织信息、家族史收集与展示、收集的临床数据以及临床工作流程整合。我们发现FHx工具之间存在大量差异,没有两个是相同的。本文为有兴趣了解现有面向患者的电子FHx工具之间差异的医疗保健提供者、研究人员和患者权益倡导者提供了有益的综述。