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: 9328111
• 负责人: Cinnamon S Bloss
• 金额: $ 59.44万
• 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 2020-02-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9328111
• 关键词: Address; Adolescent; Adopted; Adult; Affinity; Area; Behavioral; Behavioral Model; Big Data; Bioethics; Cellular Phone; Childhood; 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 Neoplasms; 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; Surveys; Technology; Testing; Time; base; computer science; 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.



项目成果

Attitudes Toward School-Based Surveillance of Adolescents' Social Media Activity: Convergent Parallel Mixed Methods Survey.

对基于学校的青少年社交媒体活动监控的态度：收敛并行混合方法调查。

• DOI: 10.2196/46746
• 发表时间: 2024
• 期刊: JMIR formative research
• 影响因子: 2.2
• 作者: Burke,Colin;Triplett,Cynthia;Rubanovich,CarynKseniya;Karnaze,MelissaM;Bloss,CinnamonS
• 通讯作者: Bloss,CinnamonS

Social Media Surveillance in Schools: Rethinking Public Health Interventions in the Digital Age.

• DOI: 10.2196/22612
• 发表时间: 2020-11-12
• 期刊: Journal of medical Internet research
• 影响因子: 7.4
• 作者: Burke C;Bloss C
• 通讯作者: Bloss C

Privacy Attitudes among Early Adopters of Emerging Health Technologies.

• DOI: 10.1371/journal.pone.0166389
• 发表时间: 2016
• 期刊: PloS one
• 影响因子: 3.7
• 作者: Cheung C;Bietz MJ;Patrick K;Bloss CS
• 通讯作者: Bloss CS

Associations Between Privacy-Related Constructs and Depression and Suicide Risk in Health Care Professionals, Trainees, and Students.

医疗保健专业人员、实习生和学生的隐私相关结构与抑郁和自杀风险之间的关联。

• DOI: 10.1097/acm.0000000000004513
• 发表时间: 2022
• 期刊: Academic medicine : journal of the Association of American Medical Colleges
• 作者: Rubanovich,CarynKseniya;Zisook,Sidney;Bloss,CinnamonS
• 通讯作者: Bloss,CinnamonS

Assessing Diversity in Newborn Genomic Sequencing Research Recruitment: Race/Ethnicity and Primary Spoken Language Variation in Eligibility, Enrollment, and Reasons for Declining.

评估新生儿基因组测序研究招募的多样性：种族/族裔和主要口语变异在资格、入学率和拒绝原因方面的差异。

• DOI: 10.1016/j.clinthera.2023.06.014
• 发表时间: 2023
• 期刊: Clinical therapeutics
• 影响因子: 3.2
• 作者: Cakici,JulieA;Dimmock,David;Caylor,Sara;Gaughran,Mary;Clarke,Christina;Triplett,Cynthia;Clark,MichelleM;Kingsmore,StephenF;Bloss,CinnamonS
• 通讯作者: Bloss,CinnamonS