Giving patients granular control of personal health information: Using an ethics “Points to Consider” to inform informatics system designers

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2013-12
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American English
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http://dx.doi.org/10.1016/j.ijmedinf.2013.08.010
Abstract

OBJECTIVE: There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this.

METHODS: We reviewed existing literature on the ethical and policy issues, developed an ethics framework called a "Points to Consider" (P2C) document, and convened a national expert panel to review and critique the P2C.

RESULTS: We developed the P2C to aid informaticists designing an advanced query tool for an electronic health record (EHR) system in Indianapolis. The P2C consists of six questions ("Points") that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care.

DISCUSSION: The P2C is intended to clarify what is at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion.

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Cite As
Meslin EM, Alpert SA, Carroll AE, Odell JD, Tierney WM, Schwartz PH. Giving patients granular control of personal health information: Using an ethics “Points to Consider” to inform informatics system designers. International Journal of Medical Informatics. 2013 Dec;82(12):1136–43.
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This publication was supported by: Award No.: 90HT0054/01, a cooperative agreement program from the US Department of Health and Human Services, Office of the National Coordinator for Health IT to Indiana Health Information Technology, Inc. (IHIT) under the State HIE – Challenge Grant Program to the Indiana University School of Medicine and Regenstrief Institute, Inc. (EMM, AEC, JDO, PHS, WMT); Pierre de Fermat Chair d’Excellence Région Midi-Pyrénées, Toulouse, France (EMM); NIH grant # UL1RR025761 Indiana Clinical and Translational Sciences Institute (EMM, SA, JDO, PHS, WMT); IU Center for Law, Ethics and Applied Health Research (CLEAR) (EMM, SA, PHS).
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