Lisa Kwesell started getting emails and notices mailed to her home last year about her employer’s new wellness program, which was marketed as voluntary and an opportunity to help workers manage or improve their health.
She’d worked for Yale University as a part-time unionized employee for 14 years, and this was the first time she was being offered the opportunity to join a wellness program.
But as she started reading through the terms and conditions with her husband, Kwesell realized two things that made her pause, one being that her private health information would be shared, to an extent, with her employer and other companies involved with the program.
It was also clear that if she didn’t participate, $25 a week would come out of her paycheck, adding up to $1,300 a year.
“I said, this is really, really bad and it’s really wrong and it’s against my rights as a human being and no one needs to know my personal health information other than me and my doctor,” she said.
Kwesell, 56, is now a lead plaintiff in a class action lawsuit against Yale that says the university’s wellness program violates federal health privacy and discrimination laws. Workers said the program forces people to choose between keeping medical information private or earning their full income, a choice which they don’t see as voluntary.
“I don’t think anyone should be compelling someone to do something that they don’t agree with under threat of financial penalty or punitive deductions from their paycheck,” said Jason Schwartz, a 46-year-old unionized locksmith and another lead plaintiff in the case.
Attorneys say conflicts like the one at Yale are likely happening in other parts of the country, too — workplace wellness programs have grown so popular that it has turned into an $8 billion industry, even when there’s a lack of scientific studies that prove these programs work.
Federal laws like the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act prohibit employers from asking for or collecting private health and genetic information from their workers unless it’s for a voluntary workplace wellness program.
But that’s where the definition of voluntary can be interpreted differently. Dara Smith, a senior attorney at AARP Foundation, which is providing co-counsel for plaintiffs in the Yale suit, said she doesn’t consider programs with high punitive financial penalties for nonparticipants as voluntary.
“You have a right to keep that (health) information to yourself,” Smith said. “It can be a complicated and confusing area of law, and so we’re really trying to pave the way to show that these programs are illegal and provide a roadmap on how to prove that.”
Yale officials stated that the university does not comment on pending litigation. But it does advertise its Health Expectations Program on its website. According to the page, the wellness program is open to employees who are members of Local 34 and 35 Unite Here labor unions, which represent several thousand workers.
Participants need to complete a series of preventative health services like physical exams, blood tests and cancer screenings, depending on their age.
The program collects insurance claims data to share with a third-party company that makes sure employees are complying. The data is also shared with a health and disease management organization called Trestle Tree. Employees may be required to work with a Trestle Tree coach if they have poor test results, high utilization of hospitals and emergency departments, or a health issue like diabetes, hypertension or heart failure.
Schwartz is against the financial penalty, but he sees the program requirements and data sharing as the biggest flaws with the program.
“I don’t disagree with the fact that people should take an interest in their own health, but the bottom line is, it’s very invasive to have someone else other than you and your doctor involved in whatever medical problem you’re facing,” Schwartz said. “It’s traumatic enough, right?”
Not all workplace wellness programs look the same, but many share some common things, like incentives.
A 2018 Kaiser Family Foundation survey report found that up to 50 percent of large-employer wellness programs with health risk assessments included incentives like discounts on insurance premiums, gift cards and other rewards to encourage participants to meet goals and stay in compliance.
In a February 2018 document published by the Society for Human Resource Management, one of the largest human resource associations in the country, incentives are also listed as “an effective tool to change unhealthy behaviors” and to “increase participation rates.”
But nowhere does it mention financial penalties or “downside incentives” as examples of wellness program components.
“These programs have been instituted at other places without a financial penalty,” Schwartz said. “So how did Yale agree to all of this? How did the union agree to it? It just doesn’t make much sense to me.”
Dr. Zirui Song, assistant professor of health care policy at Harvard Medical School, is among researchers trying to figure out if and how wellness programs translate to less health care spending overall and better health outcomes.
He co-authored a study published in April in the Journal of the American Medical Association on his findings in a large-scale clinical trial that looked at the outcomes of a workplace wellness program after 18 months.
“We’ve learned that health behaviors can respond to a wellness program,” he said, citing that the study found higher rates of exercise and weight management among participants than non-participants.
“But the lack of significant differences in terms of clinical measures of health or health care spending might temper expectations among employers of programs like this to generate large financial returns on investment in the short run,” he said.
Song said that doesn’t mean wellness programs can’t be effective or make a difference in clinical outcomes — just that there isn’t enough evidence right now to confirm those theories.
“We do not yet have a specific prototype of a workplace wellness program that has been shown to deliver returns in a wide array of workplaces,” he said, “so that is still an open question and that includes whether or not a wellness program ought to have only upside incentives or both upside and downside incentives.”
Meanwhile, Smith said the outcome in the lawsuit against Yale could help other employees and employers settle wellness program disputes. Josh Goodbaum, of New Haven law firm Garrison, Levin-Epstein, Fitzgerald and Pirrotti, is also a lead attorney on the case and said the complaint has already garnered some local interest.
“We’ve already been seeing a number of people — Yale employees and people with other employers — realizing what’s going on or realizing that there’s something that they can do about it."