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Report on Personal Health Information Sharing in Electronic Health Record Exchange

Report on Personal Health Information Sharing in Electronic Health Record Exchange

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Worried about the privacy of your personal health information? This whitepaper discusses the extent to which patients should have control over the sharing or withholding of their personal health information in the transition to electronic health records (often called electronic medical records).


HealthIT- http://www.HealthIT.gov
Worried about the privacy of your personal health information? This whitepaper discusses the extent to which patients should have control over the sharing or withholding of their personal health information in the transition to electronic health records (often called electronic medical records).


HealthIT- http://www.HealthIT.gov

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Published by: ONC for Health Information Technology on Jan 20, 2011
Copyright:Attribution Non-commercial

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05/17/2013

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 DATA SEGMENTATION IN ELECTRONIC HEALTH INFORMATION EXCHANGE:POLICY CONSIDERATIONS AND ANALYSISSeptember 29, 2010
Prepared for 
:Jodi Daniel, JD, MPH, Director, Office of Policy and PlanningSteven Posnack, MHS, MS, Division Director, Federal PolicyJoy Pritts, JD, Chief Privacy OfficerOffice of the National Coordinator for Health IT200 Independence Avenue, SW, Suite 729DWashington, DC 20201
Prepared by
:Melissa M. Goldstein, JDAssociate ProfessorDepartment of Health Policy, School of Public Health and Health ServicesThe George Washington University Medical Center2021 K Street, N.W., Suite 800Washington, DC 20006Alison L. Rein, MSDirectorAcademyHealth1150 17th Street NW, Suite 600Washington, DC 20036
With research assistance from
:Melissa M. Heesters, JDPenelope P. Hughes, JDBenjamin WilliamsScott A. Weinstein 
 
The content of this whitepaper does not necessarily reflect the views or policies of the Office of the National Coordinator or the Department of Health and Human Services. The authors aresolely responsible for the content. 
 
DATA SEGMENTATION IN ELECTRONIC HEALTH INFORMATIONEXCHANGE: POLICY CONSIDERATIONS AND ANALYSISEXECUTIVE SUMMARY
The issue of whether and, if so, to what extent patients should have control over thesharing or withholding of their health information represents one of the foremost policychallenges related to electronic health information exchange. It is widely acknowledgedthat patients’ health information should flow where and when it is needed to support theprovision of appropriate and high-quality care. Equally significant, however, is thenotion that patients want their needs and preferences to be considered in thedetermination of what information is shared with other parties, for what purposes, andunder what conditions. Some patients may prefer to withhold or sequester certainelements 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 beshared 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 dataelements that are perceived by a legal entity, institution, organization, or individual asbeing undesirable to share. This whitepaper explores key components of datasegmentation, circumstances for its use, associated benefits and challenges, variousapplied approaches, and the current legal environment shaping these endeavors.Data segmentation in the health care context can support granularity of choice withrespect to the following:
 
What specific data are eligible for exchange (from individual data elements todefined categories of data, such as all behavioral health records);
 
Who has access to the information (from individual providers to other health careentities);
 
Under what circumstances access is granted (
e.g.
, emergency access, treatment,
etc.
); and
 
For what period of time access is granted (
e.g.
, unlimited, one-time access,
etc.
)Collectively, these decisions reflect a set of information management preferences thattheoretically could be executed by a number of parties, including individual patients,health care providers, provider organizations, or other legal entities. At present, however,these determinations are rarely made by the individual, and the question of who actuallyshould have authority to determine and apply such preferences has emerged as asignificant issue.The impetus for protecting personal health information through the use of datasegmentation is partially rooted in state and federal privacy laws addressing stigma andsocial hostility. Frequently cited laws such as the federal Confidentiality of Alcohol and
GW SPHHS
 
 Department of Health Policy
 ES-1 

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