Impact of Privacy Environments for Personal Health Data on Patients

 描述(由申请者提供)：在我们的社会中，一个大数据生态系统正在演变，在这个生态系统中，人们可能对自己的个人健康信息流几乎没有控制权，因此他们的隐私也几乎没有控制权。此外，尽管政府最高层对大数据和隐私进行了重大讨论，但对于隐私到底是什么，学者和利益相关者几乎没有达成共识，更不用说缺乏个人对隐私概念的数据了。虽然关于这种情况的潜在危害以及与健康相关的大数据能力与隐私控制和保护之间的鸿沟正在迅速扩大的潜在危害已经写了很多文章，但我们对个人层面隐私担忧的性质和影响几乎没有系统的了解，也没有可靠和有效的工具来从患者那里获取此类知识。该项目的目标是在与健康相关的大数据技术的背景下概念化、测量和了解个人隐私亲和力和对隐私环境的反应。该项目的主要成果将是一种心理测量学工具：隐私亲和力和隐私环境反应(“纸”)量表。在许多不同的领域，包括哲学、社会学和法学，隐私权一直是几个拟议的理论框架的主题。从行为学和心理学的角度考虑隐私，我们提出了一个初步的概念模型，其中隐私是稳定的个人隐私亲和力或偏好和不断变化的个人对不同隐私环境的反应的组合。我们用定性和定量的方法提出了一个分三个阶段的项目：在第一阶段，我们将通过全面的文献综述、个人访谈、焦点小组、专家咨询和对先前两项研究的初步数据的分析来完善我们的概念模型。在第二阶段，我们将开发一种心理测量学工具，根据衡量患者报告结果的既定做法，测量与个人健康数据信息技术相关的个人隐私亲和力和隐私环境反应。我们将利用现有的仪器开发平台。在第三阶段，我们将对超过2,000人的在线患者社区管理该仪器。我们将探讨隐私与采用与健康相关的大数据技术的倾向、共享个人健康数据用于研究的意愿以及疾病类型和阶段之间的关系。为了实现这些目标，我们组建了一支专家团队，涉及生物伦理学、法律、信息和计算机科学、临床心理学、医学和公共卫生、心理测量学和仪器开发、隐私理论和技术、在线调查研究和卫生政策。开发一种评估隐私的工具将催化患者和社区对这一重要主题的研究。反过来，这将告知和促进透明的、以患者和用户为中心的隐私政策和做法的发展，在这个前所未有的技术进步的时代，这些政策和做法是至关重要的。

 DESCRIPTION (provided by applicant): A big data ecosystem is evolving in our society in which people may have, or feel they have, little control over the flow of their personal health information, and thus their privacy. Further, although there has been significant discussion related to big data and privacy at the highest levels of government, there is little consensus among scholars and stakeholders as to what privacy actually is, not to mention a lack of data from individuals as to personal conceptions of privacy. While much has been written about the potential harms of this and the rapidity with which the divide between health-related big data capabilities and privacy controls and protections is widening, we have little systematic knowledge of the nature and impacts of individual-level privacy concerns, and no reliable and valid tools for acquiring such knowledge from patients. The goal of this project is to conceptualize, measure, and understand individual privacy affinities and responses to privacy environments in the context of health-related big data technologies. The primary deliverable of the project will be a psychometrically sound instrument: the Privacy Affinities and Privacy Environment Responses ("PAPER") scale. Privacy has been the subject of several proposed theoretical frameworks in many different fields including philosophy, sociology, and law. Considering privacy from a behavioral and psychological perspective, we propose a preliminary conceptual model in which privacy is a combination of stable individual privacy affinities or predilections and changing individual responses to different privacy environments. We propose a three-phase project using qualitative and quantitative methods: In Phase One, we will refine our conceptual model through comprehensive literature review, individual interviews, focus groups, consultation with experts, and analyses of preliminary data from two previous studies. In Phase Two, we will develop a psychometrically sound instrument to measure individual privacy affinities and privacy environment responses related to personal health data information technologies according to established practices for measuring patient-reported outcomes. We will leverage an established instrument development platform. In Phase Three, we will administer this instrument to an online patient community of over 2,000 individuals. We will explore the relationship between privacy and propensity to adopt health-related big data technologies, willingness to share personal health data for research, and disease type and stage. To accomplish these goals, we have assembled a team of experts in bioethics, law, information and computer science, clinical psychology, medicine and public health, psychometrics and instrument development, privacy theory and technology, online survey research, and health policy. Development of an instrument to assess privacy will catalyze patient- and community-engaged research on this important topic. In turn, this will inform and promote development of transparent, patient- and user-centered privacy policies and practices, which are critically needed at this time of unprecedented technological advancement.