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

Virginia M. Miori is a Full Professor and Chair of the Decision and System Sciences Department in the Haub School of Business at Saint Joseph's University, USA.Daniel J. Miori, MS PA-C, is a physician assistant and author. He works on the Palliative and Supportive Care team and is on the ethics committee at Erie County Medical Center in Buffalo, NY, USA.Flavia Burton is Assistant Professor of Practice with the Department of Decision and System Sciences (DSS) in the Haub School of Business at Saint Joseph's University, USA.Catherine G. Cardamone is Adjunct Professor with the Department of Decision and System Sciences (DSS) in the Haub School of Business at Saint Joseph's University, USA.

• Chapter 1. Making the Case; Daniel J. Miori Chapter 2. Privacy and Learning Health Systems; Daniel J. Miori Chapter 3. Shaping the Continuum of Care Through Public Policy and Data; Thomas R. Martin Chapter 4. Public Data Sources: Cleaning and Wrangling; Virginia M Miori Chapter 5. Public Data Sources: Sizing the Palliative Population; Virginia M Miori Chapter 6. Private Data Sources, Data Privacy and Data Simulations for Palliative LHS; Virginia M Miori Chapter 7. Synthea Descriptive Analysis; Virginia M Miori Chapter 8. Palliative LHS Analysis; Virginia M Miori Chapter 9. Data Repository Design for Public Data Analysis; Brian W. Segulin Chapter 10. Palliative LHS Development and API to Ensure Data Privacy; Brian W. Segulin Chapter 11. Learning Health Systems Ethics Review; Daniel J. Miori