You and your doctor know the answers to these questions, and now others may too: businesses that are contracting with employers to collect and analyze employee health data. But federal privacy law does not provide safeguards for how this information is used.
A Wall Street Journal report last month looked at a company called Castlight Health, which analyzes employees’ health care claims and demographic data to make predictions about their health care needs — for instance, women who have stopped filling their birth control prescriptions might become pregnant. It then gives employees advice intended to help them get the most out of their health care benefits (if a woman stops purchasing birth control, it might send her an alert about the benefits of a preconception visit to an obstetrician). It also gives employers aggregate data on their workers, like the number of employees it predicts will become pregnant soon.
Such data, employers believe, can help reduce costs by allowing them to tailor health insurance plans to fit employee demands. Castlight, which gets information from insurers as well as from employee searches on its online platform, says it uses strict standards to make sure that employers can’t use the data to identify specific employees. But no federal law requires such safeguards. The Health Insurance Portability and Accountability Act includes some privacy protections for patients, but it applies primarily to health care providers, not companies like Castlight.
Giving employers access to employee health information could make workers vulnerable to discrimination. The Americans With Disabilities Act prohibits employers from discriminating against workers who have disabilities, but it does not ban discrimination based on behaviors like smoking, inactivity or eating fatty foods, or based on a person’s probability of having a disability in the future.
Many states prohibit employers from firing people because they smoke. Michigan and several cities ban discrimination based on weight. But federal law offers little recourse to workers fired because of data showing a pattern of unhealthy behavior.
To address this problem, a group of legal scholars has called for federal legislation that would bar companies from hiring or firing people based on health information gleaned through health data services. It would also ensure employees’ right to see the information these services collected about them and to have that information deleted.
As data analysis techniques evolve, such services will be able to draw ever more sophisticated conclusions about people based on their health care use. Americans need federal protections to make sure that those conclusions don’t cost them their jobs.