Protecting privacy while gathering health data

by jeeg 11. August 2014 19:50

 

As health care goes digital, data is an increasingly valuable commodity.

Correctly crunched, the massive amount of patient health information now online could lead to big improvements in medicine. But few agree on a way to acquire, see, share and use the data that satisfies everyone who wants a piece.

That debate took a turn this week when rival insurers Blue Shield of California and Anthem Blue Cross said they would team up to create an health information sharing network with their combined 9 million patients.

Because companies traditionally guard such data, wanting to hold on to every competitive edge possible, the insurers tout the digital network as a major step in sharing information that manages to respect patients' privacy. But privacy advocates question whether the final product will truly take into account patients' interests.

As health care goes digital, data is an increasingly valuable commodity.

Correctly crunched, the massive amount of patient health information now online could lead to big improvements in medicine. But few agree on a way to acquire, see, share and use the data that satisfies everyone who wants a piece.

That debate took a turn this week when rival insurers Blue Shield of California and Anthem Blue Cross said they would team up to create an health information sharing network with their combined 9 million patients.

Because companies traditionally guard such data, wanting to hold on to every competitive edge possible, the insurers tout the digital network as a major step in sharing information that manages to respect patients' privacy. But privacy advocates question whether the final product will truly take into account patients' interests.

 

"People have been saying, 'Wow, health information exchanges have not gotten off the ground, this is a jump start,' " said Lee Tien, a senior staff attorney at the Electronic Frontier Foundation in San Francisco. "But is it a real jump start? A public relations jump start? I'm not sure what it benefits."

The California Integrated Data Exchange, or Cal Index, plans to pool electronic medical records from doctors and hospitals by the end of the year. Blue Shield and Anthem Blue Cross, two of the state's largest insurers, are inviting other providers and insurers to join the network and add their patients' information. All records will be integrated with claims data, and physicians will be able to share information through a secure system, the insurers say.

"We believe that providers and plans must collaborate to ensure that Californians receive quality health care at a sustainably affordable price - and a fundamental component is sharing comprehensive patient information broadly and efficiently," Mark Morgan, Anthem Blue Cross' president, said in a statement.

Network goals

The goal is to use the data to cut unnecessary expenses like duplicated tests, reduce mistakes and enable patients to receive care faster, while obeying state and federal privacy laws, the insurers say. California's size will probably make the network the largest in the country, topping similar networks in Kansas, Nebraska and Massachusetts.

Like all electronic health services that strive to share data, Cal Index must comply with the federal law that defines protections for patient data.

The law "wants to find a framework where on the one hand, society is not deprived of the research benefits associated with health information, and neither are patients deprived of their privacy," said Riyad Omar, general counsel at Practice Fusion in San Francisco. The startup's cloud electronic health record system hosts 80 million patient records from 112,000 medical providers.

When and how patients agree to share data are critical matters in health information technology. In a recent survey by the state Office of Health Information Integrity, nearly 90 percent of 800 Californians said they prefer in theory to be asked if they want to share. Most said they do not want their records shared without their explicit consent. In practice, too, people are generally willing to share their information when offered the choice, the state agency's March report found.

Still, some companies worry that giving patients the choice to opt in could lower participation rates. If too few people agree to share data, the intended benefits of pooling information could be lost.

As Tien put it, "The industry has never liked opt-in. Privacy advocates believe in opt-in."

By default, the 9 million patients in Blue Shield and Anthem Blue Cross will become part of the network. Before the system goes live, members will be told of a website where they can choose to not have their information shared, said Dr. Ken Park, vice president of payer and provider solutions at Anthem Blue Cross. Those patients will still receive coverage and treatment.

Cal Index chose this approach to try to balance privacy protection and participation rates, given that rates can sometimes be lower when people are asked to opt in, Park said.

In addition, Cal Index is ironing out the details of who can see the data, and to what extent.

Doctors may have abbreviated versions of patient records so they aren't overwhelmed. Patients who want to see all their data will eventually have their own website, but that site won't be available when the system starts, Park said.

Looking for trends

Researchers, too, may want access so they can look for trends in genetic risks, lifestyle habits and other factors in people's health. Academics won't be allowed into the entire database, but they can see data tailored to their line of inquiry that strip any identifying information about patients..

No data will be sold, but Cal Index won't necessarily shut out researchers sponsored by, say, the pharmaceutical industry. Tien wants to see the system's research policy more spelled out.

"That tension between people's willingness to contribute to the greater good, but at same time not wanting to be the basis on which someone else makes a lot of money - that tension needs to be resolved," he said.

Stephanie M. Lee , San Francisco Chronicle

 

 

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