자료유형  

 학위논문

Control Number  

0016935675

International Standard Book Number  

9798380374934

Dewey Decimal Classification Number  

614

Main Entry-Personal Name  

Stanhaus, Amanda C.

Publication, Distribution, etc. (Imprint  

[S.l.] : University of Michigan., 2023

Publication, Distribution, etc. (Imprint  

Ann Arbor : ProQuest Dissertations & Theses, 2023

Physical Description  

1 online resource(267 p.)

General Note  

Source: Dissertations Abstracts International, Volume: 85-03, Section: B.

General Note  

Advisor: Anthony, Denise L.

Dissertation Note  

Thesis (Ph.D.)--University of Michigan, 2023.

Restrictions on Access Note  

This item must not be sold to any third party vendors.

Restrictions on Access Note  

This item must not be added to any third party search indexes.

Summary, Etc.  

요약Privacy can be understood as access of one actor (whether individual or organization) to another, with decisions determining access being made according to socio-contextual factors (i.e., structures, protections, relations, and obligations). In the US healthcare delivery context, patients disclose information (e.g., intimate details; family history; biospecimens) to providers in support of their own treatment after being notified via standardized privacy policies that electronic health information (EHI) is governed by heightened federal protections that govern organizations participating in healthcare delivery. In contrast, in the US consumer context, organizations process information representing individuals in accordance their bespoke privacy policies that generally adhere to the Fair Information Practice Principles (i.e., transparency, use limitation, access and correction, data quality, and security) and typically follow the provisions of notice and consent. These consumer data privacy legal protections have been critiqued as "privacy self-management," as legal scholar Daniel Solove argues that such "choices" ultimately legitimize nearly unlimited data gathering, analysis, and retention by commercial entities in accordance with the organizationally-defined privacy policies, rather than any real ability for consumers to control or "self-manage" their data.Increasingly, EHI is being governed by privacy self-management. This dissertation seeks to understand how different actors view the utilization of privacy self-management in the healthcare realm. Using qualitative and quantitative methods, three studies examine how members of the US public, patients, and organizations conceptualize privacy self-management. Each of the three studies indicates that the public's, patients', and organizations' conceptions of privacy self-management, respectively, are embedded in social structures (e.g., legal, organizational, professional, and ethical protections) and relations (e.g., legal, professional, contractual, and ethical obligations). First, analysis of nationally representative survey data (n=2,074; Source: NIH-5R01CA214829-02, Principal Investigator [PI] Kardia) finds that few people in the United States have confidence in their ability to self-manage their health information. Confidence in privacy self-management is localized to a minority of the public that believes EHI obligations will be fulfilled, a problematic situation as that belief is not widely held and, furthermore, those obligations do not extend to the consumer context. Second, analysis of data gathered at two public deliberative sessions (N=61; Source: NIH-5R01CA214829-02, PI Kardia) finds that patients were dissatisfied with existing safeguards. They recommended increasing the transparency of data flows yet stopped short of endorsing other proposed safeguards that increased patient burden and they grappled with introducing choice when they considered the ethical obligations to fellow patients. And finally, analysis of comments submitted by organizations (n=164) during the notice of public rulemaking period for the Proposed Cures Act Application Programming Interface (API) Rule finds that organizations inside and outside of the healthcare delivery system portray privacy self-management in accordance with their obligations to individuals. Essentially, critics of expansion cited concerns regarding healthcare delivery organizations' obligations to patients compared to the lack of obligations that technology firms have for consumers.This dissertation finds that the privacy self-management conceptions of US public, patients, and organizations are indeed embedded in larger socio-contextual factors. Therefore, practitioners, policymakers (whether governmental or organizational) and researchers are encouraged to adopt a more socialized understanding of privacy self-management, which could, respectively, support patient engagement, substantive reform, and a better explanation of the limitations of privacy self-management. Privacy is not dead; our understanding of privacy as a social phenomenon is just in its infancy.

Subject Added Entry-Topical Term  

Public health.

Subject Added Entry-Topical Term  

Sociology.

Subject Added Entry-Topical Term  

Health care management.

Subject Added Entry-Topical Term  

Public policy.

Index Term-Uncontrolled  

Privacy

Index Term-Uncontrolled  

Socio-contextual factors

Index Term-Uncontrolled  

Legal protections

Index Term-Uncontrolled  

Self-management

Index Term-Uncontrolled  

Ethical protections

Index Term-Uncontrolled  

Policymakers

Added Entry-Corporate Name  

University of Michigan Health Services Organization & Policy

Host Item Entry  

Dissertations Abstracts International. 85-03B.

Host Item Entry  

Dissertation Abstract International

Electronic Location and Access  

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Control Number  

joongbu:642022