Impact of Privacy Environments for Personal Health Data on Patients

个人健康数据隐私环境对患者的影响

• 批准号: 9007754
• 负责人: Cinnamon S Bloss
• 金额: $ 77.99万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN DIEGO
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-01 至 2018-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9007754
• 关键词: Address; Adolescent; Adopted; Adult; Affinity; Area; Behavioral; Behavioral Model; Big Data; Bioethics; Cellular Phone; Chronic Disease; Clinical Psychology; Cognitive; Communities; Conceptions; Consensus; Consultations; Data; Data Collection; Development; Device or Instrument Development; Disease; Ecosystem; Electronic Health Record; Environment; Focus Groups; Goals; Government; Health; Health Policy; Healthcare; Individual; Industry; Information Sciences; Information Technology; Interview; Knowledge; Laws; Legal; Literature; Mainstreaming; Malignant Childhood Neoplasm; Measures; Medicine; Methods; Modeling; Nature; Parents; Patient Outcomes Assessments; Patients; Phase; Philosophy; Policies; Population; Privacy; Psychological Models; Psychometrics; Public Health; Reporting; Research; Review Literature; Sampling; Schools; Societies; Sociology; Staging; Surveys; Technology; Testing; Time; Writing; base; computer science; empowered; genome sequencing; health data; improved; instrument; mHealth; member; population based; precision medicine; preference; psychologic; public health relevance; response; sensor; sound; statistics; theories; tool; trait; willingness

 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.

 描述（由申请人提供）：我们的社会正在发展一个大数据生态系统，在这个生态系统中，人们可能或感觉自己几乎无法控制自己的个人健康信息的流动，从而影响他们的隐私，尽管存在很大的影响。虽然政府最高层就大数据和隐私进行了讨论，但学者和利益相关者之间对于隐私到底是什么几乎没有达成共识，尽管已经有很多文章提及，但缺乏个人对隐私的个人概念的提及。关于此行为的潜在危害以及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，我们对个人隐私问题的性质和影响知之甚少，也没有可靠有效的工具来从患者那里获取此类知识。该项目的目标是在健康相关的大数据技术背景下概念化、衡量和理解个人隐私亲和力和对隐私环境的反应。该项目的主要交付成果将是一个心理测量学上合理的工具：隐私亲和力和隐私。环境响应（“论文”）规模。隐私已经成为包括哲学、社会学和法律在内的许多不同领域提出的理论框架的主题。从行为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，其中隐私是一个组合。我们提出了一个使用定性定量和方法的三阶段项目：在第一阶段，我们将通过全面的文献综述、个人访谈、焦点小组来完善我们的概念模型。咨询专家并进行初步分析在第二阶段，我们将开发一种心理测量学上合理的工具，根据测量患者报告结果的既定做法来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响应。在第三阶段，我们将向超过 2,000 人的在线患者社区管理该工具，我们将探索隐私与采用健康相关大数据技术的倾向、共享个人健康数据进行研究的意愿之间的关系。疾病类型和阶段。为了实现这些目标，我们组建了一支由生物伦理学、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、在线调查研究以及卫生政策制定等领域的专家组成的团队。评估隐私的工具将促进患者和社区参与这一重要主题的研究，反过来，这将告知并促进透明的、以患者和用户为中心的隐私政策和实践的发展，这是当前迫切需要的。前所未有的技术进步。