Data ethics and digital privacy in learning health systems for palliative medicine

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 hi...

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Bibliographic Details
Other Authors: Miori, Virginia M., (Editor), Miori, Daniel J., (Editor), Burton, Flavia, (Editor), Cardamone, Catherine G., (Editor)
Format: eBook
Language: English
Published: Bingley, U.K. : Emerald Publishing Limited, 2023.
Series: Studies in media and communications ; v. 23.
Subjects:
Data privacy.
Information technology > Moral and ethical aspects.
Palliative treatment > Information technology.
Technology & Engineering, Social Aspects.
Ethical issues: scientific & technological developments.
elektronické knihy
electronic books
ISBN: 9781802623116
Physical Description: 1 online resource (248 pages).

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Table of contents

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080 |a 004.62 
245 0 0 |a Data ethics and digital privacy in learning health systems for palliative medicine /  |c edited by Virginia M. Miori (Saint Joseph's University, USA), Daniel J. Miori (Erie County Medical Center, USA), Flavia Burton (Saint Joseph's University, USA), Catherine G. Cardamone (Saint Joseph's University, USA). 
264 1 |a Bingley, U.K. :  |b Emerald Publishing Limited,  |c 2023. 
264 4 |c ©2024 
300 |a 1 online resource (248 pages). 
336 |a text  |b txt  |2 rdacontent 
337 |a computer  |b c  |2 rdamedia 
338 |a online resource  |b cr  |2 rdacarrier 
490 1 |a Studies in media and communications ;  |v v. 23 
500 |a Includes index. 
504 |a Includes bibliographical references. 
505 0 |a 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. 
520 |a 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. 
588 0 |a Print version record. 
650 0 |a Data privacy. 
650 0 |a Information technology  |x Moral and ethical aspects. 
650 0 |a Palliative treatment  |x Information technology. 
650 7 |a Technology & Engineering, Social Aspects.  |2 bisacsh 
650 7 |a Ethical issues: scientific & technological developments.  |2 bicssc 
655 7 |a elektronické knihy  |7 fd186907  |2 czenas 
655 9 |a electronic books  |2 eczenas 
700 1 |a Miori, Virginia M.,  |e editor. 
700 1 |a Miori, Daniel J.,  |e editor. 
700 1 |a Burton, Flavia,  |e editor. 
700 1 |a Cardamone, Catherine G.,  |e editor. 
776 0 8 |i Print version:  |z 9781802623109 
776 0 8 |i PDF version:  |z 9781802623093 
830 0 |a Studies in media and communications ;  |v v. 23. 
856 4 0 |u https://proxy.k.utb.cz/login?url=https://doi.org/10.1108/S2050-2060202323  |y Full text 

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