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July 2013 University of Texas Students Add Breaches

John Bender, Cynthia Maria Ivey, and Aaron Reinert, graduate students from the University of Texas, studied health breach notifications from 2005 to June 2013 to identify organizations holding personal health information. Their study documented an additional 1146 organizations and 18 categories to theDataMap. The highlighted categories below show categories added by this team.

June 2013 Bloomberg Public Records Request for Buyers of State Discharge Data

Jordan Robertson, a reporter with Bloomberg news, made public record requests for state discharge data to identify organizations acquiring statewide collections of patient specific medical records. Responses documented an additional 1108 organizations and 9 categories to theDataMap. The highlighted categories below show those added.


May 2013 Re-identification Experiment of Personal Genome Project

Latanya Sweeney, Akua Abu and Julia Winn conducted an experiment that put personal names to people who uploaded their medical and genetic information to an online public repository. The study documented an additional 3 organizations and 2 categories to theDataMap. Additionally, Latanya Sweeney added the de-identification category based on her work with The highlighted categories below show those added.

(more: Personal Genome Project, Privacert)

2010 8 Years after HIPAA

Latanya Sweeney constructed a datamap to document sharing of personal health information based on her ad hoc experiences. The goal was to compare the map with that done in 1997 (see below). She found a significant number of new categories. The image below depicts the 2010 datamap.

1997 Original Health Data Map

Paul Clayton and a committee from the National Research Council published a book, For the Record: Protecting Electronic Health Information, that examines privacy concerns in health data. Within their book is a map that shows the places personal health information flowed from a typical, but hypothetical patient at the time based on the ad hoc knowledge of committee members. The image below depicts their original 1997 datamap.


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