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  • 文章类型: Randomized Controlled Trial
    背景:电子健康记录(EHR)的推出代表了德国医疗保健系统数字化转型的核心组成部分。虽然EHR承诺更有效,更安全,从系统的角度对患者进行更快的治疗,EHR的成功实施在很大程度上取决于患者。在最近的一项调查中,四分之三的德国人表示他们打算使用EHR,而其他研究表明,使用技术的意图并不是实际使用的可靠和充分的预测指标。
    目的:控制患者使用EHR的意图,我们调查了与疾病时程相关的疾病特异性风险认知和疾病相关的病耻感是否解释了患者将医学报告上传到EHR的决策中的额外差异.
    方法:在一项在线用户研究中,241名德国参与者被要求与随机分配的医学报告互动,该报告在疾病相关的污名(高与低)和疾病时间过程(急性与慢性)方面有系统的变化,并决定是否将其上传到EHR。
    结果:疾病相关的污名(比值比0.154,P<.001)抵消了使用意向和上传决定之间的一般正相关关系(比值比2.628,P<.001),而疾病的时间进程显示没有影响。
    结论:即使患者通常打算使用EHR,与社会污名相关的疾病相关的风险认知可能会阻止人们将相关医疗报告上传到EHR。为了确保这一关键技术在数字化医疗保健系统中的可靠使用,全面保证有关EHR安全标准的透明和易于理解的信息,即使对于通常赞成使用EHR的人群也是如此。
    BACKGROUND: The rollout of the electronic health record (EHR) represents a central component of the digital transformation of the German health care system. Although the EHR promises more effective, safer, and faster treatment of patients from a systems perspective, the successful implementation of the EHR largely depends on the patient. In a recent survey, 3 out of 4 Germans stated that they intend to use the EHR, whereas other studies show that the intention to use a technology is not a reliable and sufficient predictor of actual use.
    OBJECTIVE: Controlling for patients\' intention to use the EHR, we investigated whether disease-specific risk perceptions related to the time course of the disease and disease-related stigma explain the additional variance in patients\' decisions to upload medical reports to the EHR.
    METHODS: In an online user study, 241 German participants were asked to interact with a randomly assigned medical report that varied systematically in terms of disease-related stigma (high vs low) and disease time course (acute vs chronic) and to decide whether to upload it to the EHR.
    RESULTS: Disease-related stigma (odds ratio 0.154, P<.001) offset the generally positive relationship between intention to use and the upload decision (odds ratio 2.628, P<.001), whereas the disease time course showed no effect.
    CONCLUSIONS: Even if patients generally intend to use the EHR, risk perceptions such as those related to diseases associated with social stigma may deter people from uploading related medical reports to the EHR. To ensure the reliable use of this key technology in a digitalized health care system, transparent and easy-to-comprehend information about the safety standards of the EHR are warranted across the board, even for populations that are generally in favor of using the EHR.
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  • 文章类型: Journal Article
    最近在意大利进行了第一次协助自杀。这个事件对这个国家来说是绝对的新奇,受到最近立法改革的影响,这些立法改革仅旨在引入中断健康治疗的权利,因此,进行完全遗漏的生命终结行为。这些规范性规定在以保护生命和健康权为中心的文化背景下奠定了基础;然而,随着时间的推移发生的案件,包括著名的DJFabo的故事,导致宪法法院重新评估这些命令,2019年引入在明确界定的地区诉诸辅助自杀程序的权利,包括条件的不治之症,个人的严重痛苦和保留的受审能力。此案涉及一名四肢瘫痪的受试者,他是道路交通事故的受害者。在与专门机构协商后,受试者决定在意大利接受辅助自杀程序。经主管当局授权,他发起了一个筹款活动,为所需的设备和药物提供资金,最后,他死了.意大利对辅助自杀程序的开放代表了向广泛背景迈出的一大步,以及保护个人自决权的决定性行动。然而,目前的立法框架存在重大的关键和缺陷。首先,现行法律与司法判决之间的不协调可能会在一个以民法原则为主导的国家中产生规则应用不均的问题。此外,申请人需要完全自筹资金,这显然与免费获得护理的宪法原则相冲突。然后出现了关于完成程序本身的指导文件的需要,时代,方法和药物暗示,为了大大减少仍然在每个个案中权衡的伦理委员会的决策过程。最后,在自愿终止妊娠的主题上观察到的内容,有必要询问被要求执行该行为的医生的总体方向是什么,以及他们是否有机会表达拒绝。分析的案例可以代表意大利文化新时代的开始,但是,协助自杀程序的大规模应用需要引入立法规定,以最终消除迄今为止出现的关键问题。
    UNASSIGNED: The first act of assisted suicide in Italy was recently carried out. This event is an absolute novelty for the country, affected by recent legislative changes aimed only at introducing the right to interrupt health treatments and, therefore, carry out exclusively omissive end-of-life acts. These normative provisions lay their foundations in a cultural context centered on the protection of the right to life and health; however, the cases that have occurred over time, including the famous story of DJ Fabo, have led the Constitutional Court to re-evaluate these dictates, introducing in 2019 the right to resort to assisted suicide procedures within well-defined areas, including incurability of the condition, the serious suffering of the individual and the retained ability to stand trial. The case addressed concerns a quadriplegic subject who was the victim of a road accident. Following consultation with a specialized institution, the subject made the decision to undergo an assisted sui-cide procedure in Italy. Having obtained the authorization from the competent authorities, he started a fundraiser to finance the devices and drugs required and, finally, he died. The opening by Italy towards the assisted suicide procedure represents a great step towards a broad context, as well as a decisive act for the purpose of protecting the right to self-determination of the individual. However, the current legislative framework presents significant criticalities and shortcomings. In first place, the dissonance between the laws in force and the judicial sentences is likely to generate problems of uneven application of the rules in a country dominated by the principle of Civil Law. Furthermore, the need for the applicant to fully self-finance the procedure clearly clashes with the constitutional principle of free access to care. Then emerges the need for a guideline document regarding the completion of the procedure itself, the times, methods and drugs implied, in order to significantly reduce the decision-making process by the ethics committees that still weighs on each individual case. Finally, conside-ring what has been observed on the subject of voluntary termination of pregnancy, it is necessary to ask what will be the general orientation of the doctors called to perform the act and whether they will be given the opportunity to express their refusal. The case analyzed could represent the beginning of a new era for Italian culture, but the large-scale application of assisted suicide procedures requires the introduction of legislative provisions that definitively eliminate the critical issues that have emerged so far.
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