Patient Preferences for Collecting and Repurposing Genetic, Consumer and Health Care Information

患者对收集和重新利用遗传、消费者和医疗保健信息的偏好

• 批准号: 9362094
• 负责人: David T Grande
• 金额: $ 40.59万
• 依托单位: UNIVERSITY OF PENNSYLVANIA
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-13 至 2021-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9362094
• 关键词: Accelerometer; Address; American; Big Data; Biomedical Research; Caring; Clinical; Clinical Data; Commercial Sectors; Computerized Medical Record; Consequentialism; Consumer Preferences; Data; Data Sources; Databases; Development; Ecosystem; Elements; Environment; Environmental Health; Equilibrium; Ethics; Failure; Future; Genetic; Genetic Privacy; Goals; Health; Health Insurance; Health Insurance Portability and Accountability Act; Healthcare; Healthcare Systems; Individual; Insurance; Internet; Interview; Left; Legal; Life; Link; Measures; Medical; Medical Genetics; Medical Records; Medical Research; Methods; Outcome; PMI cohort; Patient Preferences; Policies; Positioning Attribute; Precision Medicine Initiative; Privacy; Public Health; Public Sector; Qualitative Methods; Records; Registries; Regulation; Research; Research Activity; Risk; Risk Factors; Source; System; Technology; Testing; base; behavioral health; blind; common rule; contextual factors; digital; genetic information; health care delivery; health data; insight; interest; mobile application; monitoring device; novel; novel strategies; population based; population health; preference; privacy protection; programs; social; social media; web site; willingness

PROJECT SUMMARY/ABSTRACT Health-relevant information no longer comes just from electronic medical records but also from the digital footprints left behind when people use mobile applications, search the internet, wear activity monitoring devices, access direct-to-consumer health care testing, or simply converse in social media. Many efforts including those tied to the Precision Medicine Initiative (PMI) are fueling the development of large population-based databases that link clinical and genetic information. Programs are underway in a multitude of settings – academic and non-academic, commercial and public sector – to link these genetic and clinical data with data obtained from individuals' `health-relevant digital footprint' to gain insights into social, behavioral and environmental health exposures and risk factors. Current approaches to privacy are highly sector specific and blind to other considerations, such as the content of information or its purpose. These approaches also provide only partial coverage for research activities that make use of individuals' digital footprints. The proposed research will: a) use qualitative methods to define the scope of the health-relevant digital footprint and characterize potential privacy concerns from the perspective of experts and consumers; b) measure consumers' information sharing preferences in different contexts using conjoint analysis and qualitative methods; and c) determine consumers' preferences for privacy protections for different sources and users of information and intended uses through mixed methods. Our approach is grounded in a consequential ethics framework to determine whether protections applied to clinical information might be applied to health-relevant digital information. Our central hypothesis is that whereas current regulations emphasize whether information was obtained in the course of health care encounters, consumers will care less about information source, and more about the purpose for which it is later reused. The overarching goal of this research is to create a new framework for genetic and health information privacy that considers individuals' health- relevant digital footprints—beyond the boundaries of information gathered in medical encounters. The findings will provide evidence for policymakers to create new approaches to health information privacy that balance the interests of consumers with the immense research and clinical opportunities embedded in novel sources of data.

项目概要/摘要 健康相关信息不再仅仅来自电子病历，还来自 人们使用移动应用程序、搜索互联网、穿戴时留下的数字足迹 活动设备监控、直接面向消费者的医疗保健测试，或者只是简单地交谈 包括与精准医学计划 (PMI) 相关的许多努力都在社交媒体上进行。 推动连接临床和遗传的大型人口数据库的发展 各种项目正在学术和非学术领域进行。 商业和公共部门——将这些遗传和临床数据与从以下来源获得的数据联系起来 个人的“与健康相关的数字足迹”，以深入了解社会、行为和 当前的隐私保护方法高度重视环境健康暴露和风险因素。 针对特定部门并且忽视其他考虑因素，例如信息或其内容 这些方法也只提供了部分研究活动，使之成为可能。 拟议的研究将： a) 使用定性方法来 定义与健康相关的数字足迹的范围并描述潜在隐私的特征 b) 衡量消费者的信息； 使用联合分析和定性方法共享不同背景下的偏好；c) 确定消费者对不同来源和用户的隐私保护的偏好 我们的方法基于混合方法的信息和用途。 相应的道德框架，以确定是否将保护应用于临床信息 可能适用于与健康相关的数字信息。我们的中心假设是，而 现行法规强调信息是否是在医疗保健过程中获得的 在接触中，消费者会更少关心信息来源，而更关心信息的目的 这项研究的总体目标是创建一个新的。 考虑个人健康的遗传和健康信息隐私框架 相关的数字足迹——超出了医疗收集信息的范围 研究结果将为政策制定者制定新的方法提供证据。 通过大量研究平衡消费者利益的健康信息隐私 以及嵌入新数据源中的临床机会。