Data Ethics and Digital Privacy in Learning Health Systems for Palliative Medicine

Virginia M. Miori, Daniel J. Miori, Flavia Burton, Catherine G. Cardamone, Virginia M. Miori, Daniel J. Miori, Flavia Burton, Catherine G. Cardamone

• Publisher: Emerald Publishing Limited
• Year: 2023
• Print ISBN: 9781802623109
• eBook ISBN: 9781802623116
• Topic: Social Sciences
• Subtopic: Ethics in Medicine
• Index: Social Sciences

Though algorithms are chosen to eliminate bias in the Learning Health Systems (LHS) that support medical decision making, we are left with unconscious bias present in data due to lack of representation for marginalized populations, particularly in palliative care. Medical practitioners often lack historical foundations for decision making for patients in underrepresented populations, which lead to palliative patients being subjected to uneven quality of care and an absence of treatment goals due to a lack of advocacy and other challenges. 

Data Ethics and Digital Privacy in Learning Health Systems for Palliative Medicine reviews the ethical foundations that drive our approach, data collection (public data, private data and data privacy), data stratification methodologies to support marginalized and intersectional populations, analysis techniques, algorithmic development to maintain privacy, survival analysis, result interpretation, LHS development, and LHS implementation. These methodologies address the HIPAA Privacy Rule, which clearly establishes the standard to protect digitally held health care data.

Informing both research and practice, Data Ethics and Digital Privacy in Learning Health Systems for Palliative Medicine brings attention to an important issue that lies at the intersection of medicine, science, and digital technology and communication.

Table of contents

• Cover
• Title
• Chapter 1. Making the Case
• Chapter 2. Privacy and Learning Health Systems
• Chapter 3. Shaping the Continuum of Care Through Public Policy and Data
• Chapter 4. Public Data Sources: Cleaning and Wrangling
• Chapter 5. Public Data Sources: Sizing the Palliative Population
• Chapter 6. Private Data Sources, Data Privacy and Data Simulations for Palliative LHS
• Chapter 7. Synthea Descriptive Analysis
• Chapter 8. Palliative LHS Analysis
• Chapter 9. Data Repository Design for Public Data Analysis
• Chapter 10. Palliative LHS Development and API to Ensure Data Privacy
• Chapter 11. Learning Health Systems Ethics Review
• Index