面向所有人的信息学:从提供者到基于患者的应用程序,可以包括家人和朋友

L. Ohno-Machado
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Kishore (p. 931) describes a model of the effects of online informational and emotional support on self-care behavior of HIV patients, Cheung (p. 955) evaluates a recommender app for measuring longitudinal user engagement in apps for depression and anxiety treatment, and Utrankar (p. 976) reports on technology use and preferences in supporting clinical practice guideline awareness and adherence in individuals with sickle cell disease. Additionally, Taylor (p. 989) describes the role of family and friends in helping older adults manage personal health information, while Sharko (p. 1008) describes the unique privacy needs of adolescent patients and the resulting complexity of the decision-making process. Different methods have been borrowed from various disciplines over time to fill the needs of provider-, patientand other caregiverfacing applications. Bautista (p. 1018) reports on a psychometric evaluation of a scale to measure nurses’ use of smartphones for work purposes, Reese (p. 1026) uses card sorting methods to elicit expert knowledge in an ICU setting, and Pandolfe (p. 1047) proposes an architecture for a medication reconciliation application that aims at increasing patient activation and education. While the intent of information systems is always to improve care and promote health, positive and negative consequences have been reported in the literature. In this issue of JAMIA, Nouri (p. 1089) systematically reviews criteria for assessing the quality of mHealth apps, Veinot (p. 1080) discusses how informatics interventions can worsen inequality, Meyerhoefer (p. 1054) reports on provider and patient satisfaction with the integration of ambulatory and hospital EHR systems, and Plante (p. 1074) reveals trends in user ratings and reviews of a blood pressure-measuring smartphone app. Increased data sharing of clinical data, partly due to the popularity of patient-facing applications and a realization that faster biomedical discoveries may happen with the use of “big data,” also brings important issues related to ethics and how information is relayed to users. Stahl (p. 1102) discusses the role of ethics in data governance of a large neuro-ICT project, Tao (p. 1036) discusses the effects of graphical formats of self-monitoring test results for consumers, Karpefors (p. 1069) proposes a visual summary of the incidence, significance, and temporal aspects of adverse events in clinical trials, and Wright (p. 1064) describes the development and evaluation of a user interface for reviewing clinical microbiology results. The increased availability of data for studies has yet to be paired with increased transparency of these data and analytical methods to allow easy reproduction of results. Coiera (p. 963) discusses whether health informatics suffers from replication issues. Particularly in the area of predictive models, it is important that data and methods be available to assess reproducibility and generalizability to other data sets. Reps (p. 969) proposes a standardized framework to generate and evaluate patient-level prediction models using observational healthcare data. This issue of JAMIA also includes several other articles in the area of predictive modeling: Abbas (p. 1000) describes a machine learning approach for early detection of autism, Goldstein (p. 924) proposes a model to predict ambulatory no-shows across different specialties and clinics, and KalpathyCramer (p. 945) reports on a distributed deep learning networks for medical imaging data. As the articles in this issue of JAMIA exemplify, the discipline of informatics has expanded into exciting new territory in which the intersection is no longer just of biomedical sciences and computer science, but rather of a variety of other domains involved in understanding how information systems can help improve healthcare, disease prevention and promote healthier behaviors. 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引用次数: 0

摘要

很难相信,就在十年前,智能手机技术和以患者为中心的医疗保健运动才刚刚起步,它们目前的许多实例并没有在互联医疗系统的愿景中得到阐明。因此,信息学在过去的十年里发展和扩展得如此之快,所以毫不奇怪,学术文章的数量、质量和兴趣,描述了医疗保健的许多方面,包括提供者和患者,以及患者的家人和朋友,都有了很大的增长,以至于我们能够将JAMIA的一整期奉献给这些领域的研究和应用。Kishore(第931页)描述了在线信息和情感支持对艾滋病患者自我护理行为影响的模型,Cheung(第955页)评估了一个推荐应用程序,用于测量抑郁症和焦虑症治疗应用程序的纵向用户参与度,Utrankar(第976页)报告了技术使用和偏好在支持镰状细胞病患者临床实践指南意识和依从性方面的作用。此外,Taylor (p. 989)描述了家庭和朋友在帮助老年人管理个人健康信息方面的作用,而Sharko (p. 1008)描述了青少年患者独特的隐私需求以及由此导致的决策过程的复杂性。随着时间的推移,人们从不同的学科中借鉴了不同的方法来满足提供者、患者和其他护理人员的需求。Bautista(第1018页)报告了一项心理测量评估量表,用于测量护士在工作中使用智能手机的情况,Reese(第1026页)使用卡片分类方法来引出ICU环境中的专家知识,Pandolfe(第1047页)提出了一种旨在增加患者激活和教育的药物和解应用程序架构。虽然信息系统的目的始终是改善护理和促进健康,但文献中也报道了积极和消极的后果。在这一期《JAMIA》中,Nouri(第1089页)系统地回顾了评估移动健康应用程序质量的标准,Veinot(第1080页)讨论了信息学干预如何加剧不平等,Meyerhoefer(第1054页)报告了门诊和医院电子病历系统集成的提供者和患者满意度,Plante(第1074页)揭示了用户对一款血压测量智能手机应用程序的评分和评论趋势。部分原因是面向患者的应用程序的普及,以及人们意识到使用“大数据”可能会更快地发现生物医学,这也带来了与伦理和信息如何传递给用户相关的重要问题。Stahl(第1102页)讨论了伦理在一个大型神经信息通信技术项目的数据治理中的作用,Tao(第1036页)讨论了自我监测测试结果的图形格式对消费者的影响,Karpefors(第1069页)提出了临床试验中不良事件的发生率、重要性和时间方面的可视化总结,Wright(第1064页)描述了用于审查临床微生物学结果的用户界面的开发和评估。研究数据可得性的增加还有待于这些数据和分析方法的透明度的提高,以便于结果的再现。Coiera(第963页)讨论了卫生信息学是否存在复制问题。特别是在预测模型领域,重要的是要有可用的数据和方法来评估其他数据集的可重复性和推广性。Reps(第969页)提出了一个标准化框架,用于使用观察性医疗数据生成和评估患者水平的预测模型。本期《JAMIA》还包括预测建模领域的其他几篇文章:Abbas(第1000页)描述了一种用于早期检测自闭症的机器学习方法,Goldstein(第924页)提出了一种模型来预测不同专业和诊所的门诊失诊情况,KalpathyCramer(第945页)报告了一种用于医学成像数据的分布式深度学习网络。正如本期《JAMIA》中的文章所示,信息学学科已经扩展到令人兴奋的新领域,其中的交叉不再仅仅是生物医学科学和计算机科学,而是涉及了解信息系统如何帮助改善医疗保健、疾病预防和促进健康行为的各种其他领域。JAMIA一直与这一扩大的范围保持一致,并将继续为我们的读者带来最好的信息学学术工作。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Informatics for all: from provider- to patient-based applications that can include family and friends
It is hard to believe that, just a decade ago, the technology of smart phones and the patient-centered healthcare movement were just starting to take off, and many of their current instantiations were not spelled out in visions of a connected healthcare system. Accordingly, informatics has evolved and expanded so fast in the past ten years that it is not a surprise that the volume, quality, and interest in scholarly articles describing the many facets of including providers and patients, as well as patients’ family and friends, in healthcare has increased so much that we are able to dedicate a full issue of JAMIA to research and applications in these areas. Kishore (p. 931) describes a model of the effects of online informational and emotional support on self-care behavior of HIV patients, Cheung (p. 955) evaluates a recommender app for measuring longitudinal user engagement in apps for depression and anxiety treatment, and Utrankar (p. 976) reports on technology use and preferences in supporting clinical practice guideline awareness and adherence in individuals with sickle cell disease. Additionally, Taylor (p. 989) describes the role of family and friends in helping older adults manage personal health information, while Sharko (p. 1008) describes the unique privacy needs of adolescent patients and the resulting complexity of the decision-making process. Different methods have been borrowed from various disciplines over time to fill the needs of provider-, patientand other caregiverfacing applications. Bautista (p. 1018) reports on a psychometric evaluation of a scale to measure nurses’ use of smartphones for work purposes, Reese (p. 1026) uses card sorting methods to elicit expert knowledge in an ICU setting, and Pandolfe (p. 1047) proposes an architecture for a medication reconciliation application that aims at increasing patient activation and education. While the intent of information systems is always to improve care and promote health, positive and negative consequences have been reported in the literature. In this issue of JAMIA, Nouri (p. 1089) systematically reviews criteria for assessing the quality of mHealth apps, Veinot (p. 1080) discusses how informatics interventions can worsen inequality, Meyerhoefer (p. 1054) reports on provider and patient satisfaction with the integration of ambulatory and hospital EHR systems, and Plante (p. 1074) reveals trends in user ratings and reviews of a blood pressure-measuring smartphone app. Increased data sharing of clinical data, partly due to the popularity of patient-facing applications and a realization that faster biomedical discoveries may happen with the use of “big data,” also brings important issues related to ethics and how information is relayed to users. Stahl (p. 1102) discusses the role of ethics in data governance of a large neuro-ICT project, Tao (p. 1036) discusses the effects of graphical formats of self-monitoring test results for consumers, Karpefors (p. 1069) proposes a visual summary of the incidence, significance, and temporal aspects of adverse events in clinical trials, and Wright (p. 1064) describes the development and evaluation of a user interface for reviewing clinical microbiology results. The increased availability of data for studies has yet to be paired with increased transparency of these data and analytical methods to allow easy reproduction of results. Coiera (p. 963) discusses whether health informatics suffers from replication issues. Particularly in the area of predictive models, it is important that data and methods be available to assess reproducibility and generalizability to other data sets. Reps (p. 969) proposes a standardized framework to generate and evaluate patient-level prediction models using observational healthcare data. This issue of JAMIA also includes several other articles in the area of predictive modeling: Abbas (p. 1000) describes a machine learning approach for early detection of autism, Goldstein (p. 924) proposes a model to predict ambulatory no-shows across different specialties and clinics, and KalpathyCramer (p. 945) reports on a distributed deep learning networks for medical imaging data. As the articles in this issue of JAMIA exemplify, the discipline of informatics has expanded into exciting new territory in which the intersection is no longer just of biomedical sciences and computer science, but rather of a variety of other domains involved in understanding how information systems can help improve healthcare, disease prevention and promote healthier behaviors. JAMIA has kept aligned with this expanded scope and will continue to bring the best scholarly work in informatics to our readers.
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