Employer-sponsored wellness programs are getting high praise for helping to motivate employees to make healthier lifestyle choices, thereby preventing serious illnesses and reducing healthcare costs. However, critics say privacy protections for some employees are being violated by these programs, which are predicated on workers sharing their health data.

On Thursday, the Senate Health, Education, Labor and Pensions Committee conducted a hearing to determine how successful these programs are in enabling employees to lead healthier lives and to figure out how they can be improved as well as expanded. However, privacy issues surrounding health information remain a vexing issue, experts say.

“Many employers have developed wellness programs to incentivize people to make healthier choices,” said Sen. Lamar Alexander (R-Tenn.), chairman of the committee. “These programs may reward behaviors such as exercising, eating better or quitting smoking, or offer employees a percentage off their insurance premiums for doing things like maintaining a healthy weight or keeping their cholesterol levels in check.”

As part of the Affordable Care Act, Alexander pointed out that employers can offer financial incentives to their employees to encourage participation in wellness programs—in fact, he added “it was one of the only parts of the ACA on which nearly everyone agreed.”

With about 60 percent of insured Americans getting health coverage from their employers, Alexander concluded that “it is hard to think of a better way to make a bigger impact on the health of millions of Americans than to connect the consensus about wellness to employer-based insurance for 178 million people.”

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Michael Roizen, MD, chief wellness officer at the Cleveland Clinic, told the committee that nine years ago the healthcare organization began an “ambitious experiment” to improve the health and wellness of its employees and their families. Under the Cleveland Clinic’s Healthy Choice incentive program, he said employees choose to voluntarily participate and are rewarded for reaching several wellness and medical outcomes.

“We pay employees—that is, we incentivize employees,” testified Roizen, noting that not only is the program voluntary but it also decreases income inequality caused by the rise in out-of-pocket and employer insurance costs.

“The 62 percent of Clinic employees who voluntarily participate in the program have seen their healthcare costs and premiums decrease now by $600 for individuals and $2,000 annually for families,” he added. “It’s entirely voluntary.”

Steve Burd, CEO of healthcare solutions vendor Burd Health and former CEO of supermarket chain Safeway, also emphasized that the wellness program he helped to implement was “completely voluntary” and that 85 percent of the company’s employees and 70 percent of spouses opted into program. “We rewarded on outcomes, not participation,” added Burd.

However, ranking member Sen. Patty Murray (D-Wash.) and other Senate committee members expressed their concerns that employer-sponsored wellness programs could impose significant financial penalties on workers who do not wish to share their protected health information.

In particular, she took the Equal Employment Opportunity Commission to task for its 2016 regulations on employee wellness programs which provided that an employee’s decision not to participate in a wellness program was voluntary “so long as the employee did not have to pay a penalty greater than 30 percent of the cost of health insurance—in other words, thousands of dollars.”

Murray said that high of a penalty is a “problem” for the millions of employees and their spouses who choose to exercise their privacy rights and decline to provide sensitive health information such as the existence of a disability or genetic disorder.

“What the law says is that revealing information has to be voluntary—and, telling people that it will cost you $1,500 if you don’t reveal very sensitive medical information, I think stretches the bounds of what constitutes voluntary,” exclaimed Sen. Elizabeth Warren (D-Mass.).

According to Jennifer Mathis, director of policy and legal advocacy at the Bazelon Center for Mental Health Law, employees who want to participate in these wellness programs are asked “about all manner of health and medical information on a variety of levels of detail.” Mathis said employers ask employees about diagnoses for cancer, heart disease, high blood pressure, sexually transmitted diseases and stroke, as well as pregnancy status and treatments for depression or bipolar disorder.

“We need to make sure we find the right balance for wellness programs that protects workers’ rights under the Americans with Disabilities Act (ADA), HIPAA and the Genetic Information Nondiscrimination Act (GINA)—three laws that were written and passed by this committee,” added Murray.

While the ACA allows employers to offer premium discounts to employees who participate in wellness programs, Warren cautioned that Obamacare does not eliminate the protections already in federal law. Employers “cannot discriminate against their employees on the basis of genetic information, health status, or disability.”

Likewise, Mathis argued that workplace protections—especially privacy protections—provided by the ADA and GINA must be enforced.

“People with disabilities need these protections,” said Mathis, who also testified on behalf of the Consortium for Citizens with Disabilities. “It is particularly important to ensure that employer-based wellness programs are implemented in ways that promote healthy behaviors without eroding longstanding and critical workplace protections for people with disabilities.”

However, she pointed out that the EOC last year “significantly rolled back” protections it had previously enforced ensuring that employers could not penalize employees for declining to provide their health information as part of a wellness program.

“The agency instead permitted steep financial penalties for employees who choose to keep their health information private and more steep penalties if their spouses chose to keep their health information private, making this choice far from a voluntary one for many people,” added Mathis.

According to Mathis, a federal judge has since ruled that the EEOC violated the law and failed to provide a reasoned justification for this change in position.

“The agency now has an opportunity to revisit its regulations and do the right thing to afford people the rights guaranteed by the ADA and GINA,” she concluded. “The most important thing for the EEOC to remember is that their job is to apply the ADA and not to rewrite it.”

For his part, Burd said that Safeway employed 10,000 people with disabilities out of a total workforce of 185,000 employees, of which 2,000 participated in the wellness program. “The HIPAA regs, when I say they’re well thought out, allow for—and frankly require—that if the standard that you’ve set is judged to be too difficult, that you adopt a different standard and even provide a waiver,” he said, adding that about 3 percent to 4 percent of Safeway’s disabled employees received a waiver or alternative standard.

When pressed by Warren, Burd insisted that Safeway had never been accused of discrimination during the 10-year life of the program.

David Asch, MD, a professor at the University of Pennsylvania’s Perelman School of Medicine and executive director of Penn’s Center for Health Care Innovation, presented a more mixed view of such employee wellness programs. According to Asch, these programs are often overstated and risk treating some employees unfairly.

"Most large companies are using financial incentives to encourage healthy behaviors—the vast majority of them do so by adjusting the premiums their employees pay for their health insurance,” Asch testified. “In general, the key fairness question is this: How much can the behaviors we most want to target be modified through incentive programs and how much are we just punishing the people with those behaviors?”

Nonetheless, Asch said he remains “optimistic about these programs, because we are learning how to design them to be much more effective and much more fair.”

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