阿尔茨海默病的移动医疗:监管、同意和隐私问题

S. Ranchordás, B. Kaplan
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引用次数: 4

摘要

移动医疗(mHealth),即通过智能手机或平板电脑提供医疗保健或健康服务,有可能提高医疗保健服务(包括心理健康服务)的质量、可及性和可负担性。在过去的几十年里,已经开发了多种移动健康智能手机应用程序来治疗和监测第一阶段阿尔茨海默病患者的行为。常见的应用程序包括信息提醒(例如,亲人的名字或药物时间表)和跟踪服务,旨在最大限度地降低患者流浪的风险。这些应用程序可能会延缓患者的疾病进展,改善他们的生活质量,并赋予他们以及他们的护理人员权力。然而,针对阿尔茨海默氏症的移动健康应用程序既是机会的来源,也是风险的来源。本文概述了这种类型的电子健康所做出的承诺。尽管有这些承诺,但用户和应用程序开发者目前对移动医疗的支离破碎的立法和监管框架知之甚少。本文分析了移动健康的隐私和安全挑战,并解释了为什么这些问题在阿尔茨海默病患者的移动健康应用程序的情况下特别加剧。与健康和保健应用程序的其他用户不同,这些患者往往无法提供知情同意,可能很容易丢失设备,并且可能并不总是知道他们的位置正在被跟踪,他们的数据正在被收集。由于现有的医疗设备法规在很大程度上不适用于移动健康应用程序,因此在撰写本文时,许多风险和担忧仍未得到解答。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
MHealth for Alzheimer's Disease: Regulation, Consent, and Privacy Concerns
Mobile Health (mHealth), that is, the provision of health care or wellness services through smartphones or tablets, has the potential to improve the quality, access, and affordability of health care services, including mental health. In the last decades, multiple mHealth smartphone applications have been developed to treat and monitor the behavior of first stage Alzheimer’s disease patients. Common applications consist of informational reminders (for example, the names of loved ones or medication schedules) and tracking services designed to minimize the risk of patients’ wandering. These applications might delay patients’ disease progression, improve their quality of life, and empower them as well as their caregivers. However, mHealth apps for Alzheimer’s are both a source of opportunities and risks. This paper provides an overview of the promises made by this type of eHealth. Despite these promises, users and app developers currently have little clarity regarding the fragmented legislative and regulatory framework of mHealth. This paper analyzes the privacy and security challenges of mHealth and explains why these concerns are particularly exacerbated in the case of mHealth apps for Alzheimer’s patients. Contrary to other users of health and well being apps, these patients often cannot provide their informed consent, may lose their devices easily, and might not always be aware that their location is being tracked and their data collected. Since existing legislation and regulation on medical devices is to a great extent inapplicable to mHealth apps, many of these risks and concerns remain unanswered at the time of the writing.
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