Representatives from consumer watchdog groups have asked the Cal INDEX, California's health information exchange, to change their participation policies following the announcement of the Anthem data breach.
Carmen Balber, executive director of Consumer Watchdog, and Deborah Peel, MD, founder and chairwoman of Patient Privacy Rights, sent a letter to Cal INDEX CEO David Watson asking to make participation in the HIE an opt-in model instead of an opt-out model.
In their letter, Ms. Balber and Dr. Peel say Cal INDEX, Anthem and Blue Shield are putting all their customers' data at risk without consent by hosting it in one database "that could become one-stop-shopping for medical information hackers."
Currently, patient information automatically is exchangeable on the HIE unless they choose to opt-out. Even so, the letter indicates consumers don't have "a real right" to opt out, saying, "although you agree to not share the information of a consumer who opts out, you intend to continue collecting and entering that person's information into the database, and consumers will not have a right to delete that information."
The letter urges Cal INDEX to close such loopholes to boost information security, as well as the usability of HIEs.
"Particularly in light of the Anthem hack, we urge you to stop collecting patient data until every customer of Anthem and Blue Shield can choose whether to opt in, and until you correct the defects in your privacy policies that leave consumers' information unprotected," the letter concludes. "Then, make the case to consumers that the Cal INDEX health information exchange will improve patient health, and allow us to choose for ourselves."
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