A Harvard University data privacy program won a $450,000 grant from the Knight Foundation to expand its efforts to allow patients and other consumers to map where their personally identifiable information goes and with whom it is shared.
Latanya Sweeney, director of the Data Privacy Lab at Harvard's Institute for Quantitative Social Science, leads the DataMap project, launched in 2010 to track the movement of personally identified health information.
Under the Knight Foundation grant, one of 17 issued for various data projects, the DataMap will be expanded to add personally identifiable information outside the healthcare realm, though healthcare will remain a focus.
The goal of the data map project is to “document all of the places personal data goes,” Sweeney said in a video on the foundation's website.
“Our survey of the 110 most popular apps shows they share information widely,” Sweeney said. “You visit a doctor, who gets your information? We found thousands of data sharing arrangements.”
Most data sharing arrangements are opaque to the individual whose records are being bought and sold, including those in the multi-billion dollar healthcare data analytics industry, even though HIPAA modifications in 2009 required all “covered entities” to provide patients with an accounting of disclosures on request.
A proposed rule issued in 2011 to implement the change in HIPAA received considerable industry pushback. The Office for Civil Rights at HHS has since dragged its feet in issuing a final rule.
With the grant, Sweeney said she hopes to sponsor contests to develop apps and visualization tools that will help create a crowd-sourced resource to illustrate how data is being shared by companies and organizations.
“It all starts in February,” she said. “We will provide a copy of our entire dataset for others to analyze and visualize.” Contest winners will be honored at Patient Privacy Rights Foundation's International Summit on the Future of Health Privacy in Washington, D.C., in June. Other activities, including hack-a-thons and data detective contests, will start in March.
