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About Data Maps
Technically, a data map consists of nodes and edges. The nodes represent
a specific named organization or a generic category of organizations. An edge connects
two nodes to denote a data sharing arrangement between the two. For example, in the
data map above, Retail Pharmacy and Pharmacy Benefits Manager are
generic nodes and the edge connecting them denote sharing personal information from the
retail pharmacy to the pharmacy benefits manager.
About Health Data Maps
theDataMap™ project is not limited to health data, but its inspiration
comes from data maps used to depict flows of patient data.
In 1997, the National Academy Press published a data map showing flows of patient information.
In 2001, the California Healthcare Foundation constructed another health data map.
Both of these depict routine sharing of patient information prior to the promulgation
of the Health Information Portability and Accountability Act Privacy Rule (HIPAA),
which protects personal health information in the United States.
Recently, in 2010, Dr. Sweeney released a new data map depicting flows of
patient information 8 years after the promulgation of HIPAA. The kinds of entities
receiving information more than doubled, questioning whether HIPAA offers sufficient
privacy safeguards to support the dramatic increase in data sharing.
More information about these maps appears at the links above.
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