A prominent consumer group is calling on customers of two leading health insurers to boycott a vast new database of patient medical records until privacy concerns are addressed.
At issue is the California Integrated Data Exchange, or Cal Index, backed by $80 million from Anthem Inc. and Blue Shield of California.
In recent weeks, the two insurance giants have sent notices to nearly half of their 9 million customers in the state advising them that their medical information will be part of the database unless they specifically opt out.
Cal Index, announced in August, is an ambitious effort to give California hospitals and doctors a single place to get patient information culled from medical records and insurance claims. Supporters say giving an emergency room or a surgeon, for instance, the ability to instantly access a patient's medical history can improve the quality of care and reduce wasteful spending. The database could be ready for use by March or April, according to Cal Index.
But Tuesday, Santa Monica advocacy group Consumer Watchdog criticized Cal Index and the insurers for rushing ahead before questions about patient privacy had been answered.
Carmen Balber, executive director of Consumer Watchdog, said her group supports the use of electronic medical records and allowing patient data to be shared easily among medical providers. But she said consumers can't make an informed decision when Cal Index hasn't even posted its full privacy and security policy.
"We urge people to opt out because Anthem and Blue Shield have failed to notify consumers of everything they plan to do with their medical information," Balber said. The insurers "have jumped the gun."
David Watson, chief executive of Cal Index and a former executive at tech giant Oracle Corp., said some of the criticisms about notification are fair but very few consumers have expressed concerns.
He said fewer than 1% of the 4 million people notified since October have opted out of Cal Index. He said more than 30,000 people have called to ask questions and learn more. Consumers wanting to opt out can call 888-510-7142 or visit http://www.calindex.org/opt-out.
"We are very committed to operating in an ethical and legal manner," Watson said. "I think we did a reasonable job of explaining our practices, but that may not be at the level of detail the Consumer Watchdog folks wanted to see. We've been preparing our privacy policies and hiring staff."
Watson said consumers should be able to read the organization's complete notice of privacy and security within the next week.
Initially, Cal Index wants to have records on the roughly 9 million people statewide with Anthem or Blue Shield coverage. The organization is also trying to persuade other health plans and medical providers to supply patient data. Previous efforts across the country at creating these digital databases have often hit technical snags and industry turf wars.
Anthem referred questions to Cal Index. In a statement, Blue Shield said, "we're confident Cal Index can work effectively with patients and consumer groups to address these concerns" on privacy and data use.
Long Beach resident Jerrie Pickering said the Anthem notice she received in October was too vague. As a result, she called to remove her 81-year-old mother from Cal Index, but she said she never received the written confirmation she requested.
"I don't know what this organization is and how secure everything is," Pickering said.
For consumers who do participate in Cal Index, Consumer Watchdog said they should be able to review their own records in the database and correct any errors.
However, Watson said consumers won't have that ability until late next year or early 2016. Health plans and providers paying for the service will be able to view detailed information right away.
Also, opting out doesn't mean a person's medical information is removed from Cal Index.
Rather, Watson said, the information is merely blocked from view by participating health plans and providers. He said it's too cumbersome to reassemble that information if the person later changes his or her mind and opts back in.
To help allay privacy concerns, Cal Index named a consumer advocate who's an expert in health technology to its five-member board in September.
Mark Savage, director of health information technology policy and programs at the National Partnership for Women & Families in Washington, wasn't available for comment Tuesday, according to a spokesman.