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Managed-care plans are asking members to identify their race on forms or trying to collect the data through other means. Industry insiders say the efforts are to help explain and close racial disparities in medical treatment. About half of the respondents to the Health Insurance Plans Address Disparities in Care report are collecting race data, according to the study released last year by the Robert Wood Johnson Foundation, a healthcare nonprofit. Executives at some of those insurers say they’re surprised at how receptive their members are to being asked about their ethnicity.
Not surprisingly, some privacy advocates are turning a skeptical eye toward the practice, which they say is fraught with opportunities for racial and other personal data to be mishandled.
“My first question to the health insurer would be do they have a plan in place and if not, they have no business collecting that information,” says Pam Dixon, executive director of the World Privacy Forum, a San Diego-based privacy watchdog group.
Insurers are gathering data on race against a backdrop of glaring and persistent disparities in medical treatment and the prevalence of certain diseases, such as hypertension and stroke, among particular ethnic groups.
Beyond that, blacks and other minorities, on average, receive poorer quality healthcare than whites, says Susan Pisano, a spokesperson for America’s Health Insurance Plans, the health insurance industry’s trade group.
“Nobody thinks collecting race and ethnicity data alone will get the job done,” she says. “You have to measure [the disparity], try to fix it, and then measure it again.”
But Dixon says consumers should be wary of a policy that doesn’t spell out exactly how long their information will be kept, what it will be used for; and who, if anyone, it will be disclosed to. She advises not answering questions about race.
“Once you give that information up,” she says, “that’s the toothpaste that’s out of the tube and you can’t put it back.”