Last week, Consumer Watchdog urged California residents to boycott a new database being created by Anthem Blue Cross and Blue Shield of California until patient privacy questions are addressed, the Los Angeles Times reports (Terhune, Los Angeles Times, 12/16).

Background on Cal INDEX Database

In August, Anthem and Blue Shield of California — two of California's largest insurers — announced plans to create one of the largest health information exchanges in the U.S.

The two companies are investing a total of $80 million to develop the not-for-profit database, called the California Integrated Data Exchange, or Cal INDEX.

When it launches, the data exchange will include the medical records of about nine million health plan members. The records will include data on:

• Diagnoses;
• Lab tests;
• Physician and hospital visits; and
• Procedures.

Initially, patients will not be able to access their own data on the system, but Anthem and Blue Shield said that function will be added later (iHealthBeat, 8/5).

Cal INDEX estimates that the database will be ready for use by March or April of 2015.

Anthem and Blue Shield recently sent notices to nearly half of their nine million members informing them that their medical information will be included in the database unless they opt out.

If consumers opt out of the database, their information will be blocked from view by participating health plans and providers, but not removed from the database completely because it would be too difficult to reassemble individuals' information if they opted back in, according to Cal INDEX CEO David Watson (Los Angeles Times, 12/16).

Consumer Watchdog's Concerns

Consumer Watchdog argues that Cal INDEX needs to be more transparent about how patients' data will be used and protected.

Consumer Watchdog Privacy Project Director John Simpson in a statement said, "If the exchange will do so much to benefit our health care, Cal INDEX should make that case and ask us to opt in," adding, "Instead, [Anthem] and Blue Shield are telling enrollees they can opt out during the busy holiday season when we are all distracted. Worse, Cal INDEX fails to clearly explain its privacy protections and how it will operate. Consumers can't make an informed decision based on what they've said so far."

Consumer Watchdog outlined 10 questions for Cal INDEX to answer about the database, including:

• Whether or not patients can opt in and then later opt out;
• If patients will be able to see all their data that are included in Cal INDEX (Snell, Health IT Security, 12/18);
• If patients can fix incorrect information included in Cal INDEX; and
• If patients' medical data will be available to anyone other than their health care providers and insurance firms (Consumer Watchdog release, 12/16).

Simpson said, "No consumer yet has enough information to decide whether to opt into Cal INDEX," adding, "The best privacy protection for now is to opt out. You can always opt in when they make it clear what the benefits and protections will be" (Health IT Security, 12/18).

Cal INDEX Response

Watson acknowledged that some of Consumer Watchdog's comments are fair but noted that very few residents have raised concerns.  

He noted that fewer than 1% of the four million members notified so far have opted out of the database, while about 30,000 individuals have called to ask questions and learn more about Cal INDEX (Los Angeles Times, 12/16).

On Sunday, Cal INDEX released its privacy policy, which details:

• How data are obtained;
• Which data are included and excluded;
• How data are used or shared; and
• Consumers' rights (Cal INDEX release, 12/21).

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."

Blue Shield in a statement said that it is "confident Cal INDEX can work effectively with patients and consumer groups to address" concerns related to patient privacy and data use (Los Angeles Times, 12/16).