Is health data privacy even possible in the social media age?

People 'are losing control of data in a lot of ways they don’t like'
By Jack McCarthy
07:55 AM
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Smartphone with social media icons

The healthcare industry is only just beginning to understand how much we lack control over personal data and, at the same time, Americans are putting more and more data onto social networks, making it that much harder to know how best to protect it.

"People are becoming more concerned about privacy," said Jennifer Golbeck, an associate professor with the College of Information Studies at the University of Maryland. "Many are frequent social media users, but see they are losing control of data in a lot of ways they don't like, so I think we are starting to engage in a big debate."

Golbeck, a leader in creating human-friendly security and privacy systems, as well as in social media research and science communication, will explore that topic during her presentation "Your Weakest Security Link? The Answer Will Surprise You," at the HIMSS and Healthcare IT News Privacy & Security Forum.  

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Thus far, demand has not produced a market for privacy tools that can securely manage our burgeoning personal data, Golbeck said. 

"We are starting to see more tools that will do things like block cookies that track you around and that sort of thing," she continued. "Those types are out there and more are coming. I thought there was going to be a market push where the public would demand more privacy, but now I'm not sure." 

There's not been a groundswell to curtail social sharing on the immensely popular social media platforms. State and federal lawmakers will ultimately debate the issues with an eye toward privacy regulations, Goldbeck said.

Personal data privacy initiatives in Europe are providing an example of what may lie ahead for the U.S., as individual countries and the European Union as a whole are taking on issues such as the right to be forgotten on Google and other digital platforms.

The health care field in the U.S. can act as a model of data privacy regulation with laws already in place, including HIPPA regulations.

"On one hand, we know that medical information is sensitive," she said. "On the other hand our regulations just protect our medical records, they don't protect us from, say, insurance companies using data about us from social media sites or other big data to change our rates or adjust our coverage. They don't prevent drug companies from using that to say our analysis of your social media profile suggests you're depressed so here is some ad for depression medication."

[Learn more: Meet the speakers at the HIMSS and Healthcare IT News Privacy and Security Forum.]  

Yet analysis of social data in healthcare shows considerable promise for being able to create patient profiles in great depth.

Researchers may be able use social profiles to predict potential issues for pregnant women, for instance, such as the likelihood of postpartum depression. That information may be invaluable for a patient but should it be sold or given to health insurance or drug companies? 

"We need to have a discussion about sharing this type of information," Golbeck said. "Just because we want to tell people facts about ourselves doesn't mean we necessarily consent to all other public uses of the things we post."

The Privacy & Security Forum takes place Dec 1-3 at The Weston Boston Waterfront hotel. Register here

 

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