健康信息管理专业人员在支持个人考虑基因检测中的作用:一项探索性研究。

Christina Turrietta, Barbara Hewitt, Jackie Moczygemba, Alexander McLeod
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摘要

背景:越来越多的人开始探究自己对多种疾病的遗传倾向,这使他们能够在掌握更多知识的情况下做出医疗保健决定。研究目的本研究旨在利用改进的健康信念模型(HBM)找出影响个人考虑基因检测的因素。方法:作者对修改后的健康信念模型进行了测试:作者使用来自美国各地的便利样本对修改后的健康信念模型进行了测试,此前还进行了一项试点研究,以检验模型结构的有效性和可靠性。通过使用 SmartPLS,研究人员确定修改后的 HBM 可以解释用于确定影响个人考虑基因检测的因素的决策过程。研究结果结果表明,感知易感性、感知益处、行动提示、自我效能感、电子健康素养和规范信念都对个人决定是否进行基因检测起到了影响作用。结论通过基因检测,个人可能会从了解自己易患某些癌症和其他疾病中获益。然而,研究结果表明,大多数人并不知道网上有哪些资源可以帮助他们了解基因检测结果和相关疾病。影响:由于医疗保健知识是这些人报告的一个问题,医疗信息管理专业人员完全有资格通过协助他们评估可用资源的可信度,以及教育他们有关获取和保护其基因信息的隐私权,来支持他们进行电子健康知识扫盲。
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The health information management professionals' role in supporting individuals considering genetic testing: An exploratory study.

Background: An increasing number of people are exploring their genetic predisposition to many diseases, allowing them to make healthcare decisions with improved knowledge. Objectives: The aim of this study was to identify factors that influence individuals to consider genetic testing utilising a modified health belief model (HBM). Method: The authors tested the modified HBM using a convenience sample of individuals from across the United States after a pilot study was used to test the validity and reliability of the constructs. Using SmartPLS, the researchers determined that the modified HBM explains the decision-making process used to determine what influences individuals to consider genetic testing. Results: Results suggested that perceived susceptibility, perceived benefits, cues to action, self-efficacy, e-health literacy and normative belief all play a role in an individual's decision to test their genetics. Conclusion: By conducting genetic testing, individuals may benefit from knowing they are predisposed to certain cancers and other diseases. Yet, research results have indicated that most individuals are unaware of resources available online that will help them in understanding genetic test results and associated diseases. Implications: Since healthcare literacy is an issue reported by these individuals, health information management professionals are well qualified to support them in e-health literacy by assisting them to evaluate the trustworthiness of available resources, and to educate them about privacy rights regarding access to and protection of their genetic information.

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