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.
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.
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 Privacert.com. The highlighted categories below show those added.
(more: Personal Genome Project,
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.
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.
(return to map)
Copyright © 2012-2014 President and Fellows Harvard University.