Electronic Health Record; Health Information Exchange
The issue of whether and, if so, to what extent patients should have control over the sharing or withholding of their health information represents one of the foremost policy challenges related to electronic health information exchange. It is widely acknowledged that patients' health information should flow where and when it is needed to support the provision of appropriate and high-quality care. Equally significant, however, is the notion that patients want their needs and preferences to be considered in the determination of what information is shared with other parties, for what purposes, and under what conditions. Some patients may prefer to withhold or sequester certain elements of health information, often when it is deemed by them (or on their behalf) to be "sensitive," whereas others may feel strongly that all of their health information should be shared under any circumstance.
This discussion raises the issue of data segmentation, which we define for the purposes of this paper as the process of sequestering from capture, access or view certain data elements that are perceived by a legal entity, institution, organization, or individual as being undesirable to share. This whitepaper explores key components of data segmentation, circumstances for its use, associated benefits and challenges, various applied approaches, and the current legal environment shaping these endeavors.
Goldstein, M. M., Rein, A. L., Heesters, M. M., Hughes, P. P., Williams, B., & Weinstein, S. A. (2010). Data segmentation in electronic health information exchange: Policy considerations and analysis. Washington, D.C.: U.S. Department of Health and Human Services, Office of the National Coordinator for Health IT.