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Ethical, legal and social issues for personal health records and applications

Authors:

Kenneth W. GoodmanAuthors Info & Claims

Journal of Biomedical Informatics, Volume 43, Issue 5

Pages S51 - S55

https://doi.org/10.1016/j.jbi.2010.05.003

Published: 01 October 2010 Publication History

Abstract

Robert Wood Johnson Foundation's Project HealthDesign included funding of an ethical, legal and social issues (ELSI) team, to serve in an advisory capacity to the nine design projects. In that capacity, the authors had the opportunity to analyze the personal health record (PHR) and personal health application (PHA) implementations for recurring themes. PHRs and PHAs invert the long-standing paradigm of health care institutions as the authoritative data-holders and data-processors in the system. With PHRs and PHAs, the individual is the center of his or her own health data universe, a position that brings new benefits but also entails new responsibilities for patients and other parties in the health information infrastructure. Implications for law, policy and practice follow from this shift. This article summarizes the issues raised by the first phase of Project HealthDesign projects, categorizing them into four topics: privacy and confidentiality, data security, decision support, and HIPAA and related legal-regulatory requirements. Discussion and resolution of these issues will be critical to successful PHR/PHA implementations in the years to come.

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Cited By

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Oronoz MGojenola KPérez Ade Ilarraza ACasillas A(2015)On the creation of a clinical gold standard corpus in SpanishJournal of Biomedical Informatics10.1016/j.jbi.2015.06.01656:C(318-332)Online publication date: 1-Aug-2015
https://dl.acm.org/doi/10.1016/j.jbi.2015.06.016
Carrión IFernández-Alemán JToval A(2011)Usable privacy and security in personal health recordsProceedings of the 13th IFIP TC 13 international conference on Human-computer interaction - Volume Part IV10.5555/2042283.2042287(36-43)Online publication date: 5-Sep-2011
https://dl.acm.org/doi/10.5555/2042283.2042287

Ethical, legal and social issues for personal health records and applications
1. Applied computing
  1. Life and medical sciences
  2. Operations research

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cover image Journal of Biomedical Informatics

Journal of Biomedical Informatics Volume 43, Issue 5

October, 2010

255 pages

ISSN:1532-0464

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Elsevier Science

San Diego, CA, United States

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Published: 01 October 2010

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Oronoz MGojenola KPérez Ade Ilarraza ACasillas A(2015)On the creation of a clinical gold standard corpus in SpanishJournal of Biomedical Informatics10.1016/j.jbi.2015.06.01656:C(318-332)Online publication date: 1-Aug-2015
https://dl.acm.org/doi/10.1016/j.jbi.2015.06.016
Carrión IFernández-Alemán JToval A(2011)Usable privacy and security in personal health recordsProceedings of the 13th IFIP TC 13 international conference on Human-computer interaction - Volume Part IV10.5555/2042283.2042287(36-43)Online publication date: 5-Sep-2011
https://dl.acm.org/doi/10.5555/2042283.2042287

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Implementing the lifelong personal health record in a regionalised health information system: The case of Lombardy, Italy

Evolution of a web-based, prototype Personal Health Application for diabetes self-management

The Portable Personal Health Records: Storage on SD Card and Network, Only for One's Childhood

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