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

Research output: Contribution to journalArticle

43 Citations (Scopus)

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.

Original languageEnglish
JournalJournal of Biomedical Informatics
Volume43
Issue number5 Suppl
StatePublished - Oct 1 2010

Fingerprint

Personal Health Records
Health
Health Insurance Portability and Accountability Act
Computer Security
Privacy
Confidentiality
Security of data
Delivery of Health Care
Health care

ASJC Scopus subject areas

  • Computer Science Applications
  • Health Informatics

Cite this

@article{8b80367846984be19711d2d8392d9dac,
title = "Ethical, legal and social issues for personal health records and applications.",
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.",
author = "Reid Cushman and Froomkin, {A. Michael} and Anita Cava and Patricia Abril and Kenneth Goodman",
year = "2010",
month = "10",
day = "1",
language = "English",
volume = "43",
journal = "Journal of Biomedical Informatics",
issn = "1532-0464",
publisher = "Academic Press Inc.",
number = "5 Suppl",

}

TY - JOUR

T1 - Ethical, legal and social issues for personal health records and applications.

AU - Cushman, Reid

AU - Froomkin, A. Michael

AU - Cava, Anita

AU - Abril, Patricia

AU - Goodman, Kenneth

PY - 2010/10/1

Y1 - 2010/10/1

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=79952115227&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=79952115227&partnerID=8YFLogxK

M3 - Article

VL - 43

JO - Journal of Biomedical Informatics

JF - Journal of Biomedical Informatics

SN - 1532-0464

IS - 5 Suppl

ER -