The challenges of data privacy, health engagement, and employee benefits

To any health care or employee benefits insider, the Wall Street Journal’s article, Bosses Tap Outside Firms to Predict Which Workers Might Get Sick was innocuous enough. It is an overview of the ways “big data” companies are getting smarter with crunching the numbers and using an individual’s health status to strengthen their engagement with the health care system and, of course, save money.

But the article set off a sequence of media stories targeting the area that the headline writers knew would produce the most clicks: pregnancy. New York Magazine’s article had a headline makeover, and is now titled, Your Job Can Now Predict When You'll Have a Kid  but the URL still shows the original click-bait and highly inaccurate headline: “your-boss-might-get-alerted-if-you-quit-the-pill.”

That article and its inaccurate headline was shared on parent blogs such as “What to expect,” where one mom says the practice is “Way too invasive. I would absolutely quit a company that did this.” Reading that comment, I know that “the practice” the mom is referring to doesn’t exist. It is illegal and would be entirely counter to industry practices, which are taken very seriously. But the average American does not know how self-insured employers manage health care or details around HIPAA laws and third-party vendors. And the media coverage unfortunately played off that misinformation. 

As Vox noted, it was one passage from the Wall Street Journal article that alarmed people:

“To determine which employees might soon get pregnant, Castlight recently launched a new product that scans insurance claims to find women who have stopped filling birth-control prescriptions, as well as women who have made fertility-related searches on Castlight’s health app.

That data is matched with the woman’s age, and if applicable, the ages of her children to compute the likelihood of an impending pregnancy, says Jonathan Rende, Castlight’s chief research and development officer. She would then start receiving emails or in-app messages with tips for choosing an obstetrician or other prenatal care. If the algorithm guessed wrong, she could opt out of receiving similar messages.”

While the WSJ and Vox noted the many legitimate uses for this service, including locating in-network providers, preventing heart attacks, or avoiding unnecessary surgery, those were overlooked in much of the coverage.

Tackling the employee engagement challenge

The unfortunate impact of the media blitz is more misinformation about employer’s health programs. We can’t underestimate the sensitivity around health information—especially in areas such as pregnancy, where women are already hyper aware of potential bias and discrimination from their employer.

Engagement in health care programs is a real challenge for employers. Most large employers invest millions in additional health care programs—in addition to the insurance coverage itself—to help employees and their families make good health care decisions and get the best care. Most of those programs go unused, despite their value to the employee.

Accolade recently partnered with Harris to poll Americans and found that 43% of Americans say they have not used an employer or health insurance company-sponsored program within the past year. That could include a condition management program (like one for pregnancy) and a wellness program. Only 13% have used them just once, and 18% have used them 2-3 times.

The top reasons employees gave for not using these employer and health insurance programs more often were:

• They don’t find them relevant (29%).
• They don’t remember what’s available (15%).
• They find them confusing (14%).
• They don’t have the time (12%).

This is the precise reason Castlight—and many other companies—have developed smart technology to get employees the right resources at the right time. Employees—and the industry—should be applauding those efforts. Yes, companies want to save money and reduce unnecessary costs. And, yes, they will put a lot of effort behind programs that impact high-cost areas such as pregnancy and chronic illness. But, their interests align with their employees: The company saves money, employees save their health.

There are stringent laws in place to protect individual employee data from employers. Benefits and HR leaders get aggregate data about employee health, but no one gets access to individual health data—most certainly not an individual’s direct supervisor, as painted in the New York Magazine article.

Castlight's statement on Privacy, as it pertains to the Wall Street Journal article, explains:

“First, Castlight is 100% compliant with all federal privacy laws governing the handling of employee data. We strictly maintain complete employee confidentiality, and are fully compliant with all HIPAA security and administrative protocols governing protected health information (PHI). 

Moreover, employers that use our system never, under any circumstance, see individual employee data from Castlight Action. The employee data is anonymized, aggregated, and all the employer ever sees is the size of the group of employees at risk for certain conditions. (We impose minimums on the size of the group that can be displayed within the application that are more conservative than what the Center for Medicare and Medicaid Services recommends.)

The system prompts employers to authorize communications (that come from Castlight, not the employer) to encourage certain preventive or assistive actions to be taken where they might not otherwise think to look for care.”

The message here is clear: We can’t do enough to educate employees about their privacy and employee health benefits. You can start now by using this recent media attention as an opportunity to remind employees about measures that protect their data. And, the considerable efforts that you take, as an employer, to offer programs and resources that help them improve their health.

For some companies, that may not be enough. If you’re taking an aggressive approach to managing employee health and introducing a lot of new programs and providers, now may be the time to audit the privacy and security policies of each of them to ensure they are aligned with your expectations—and the employee experience you want to create.

Even with the best policies in place, though, engagement with health programs will continue to lag until employers put resources, creativity, and consistency behind marketing their programs. The obligation is on the employer to position programs in a way that they are relevant, valuable, and actionable for employees and their families. Until we do that, suspicions will reign and valuable programs will go unused.

Keep the conversation going

Data and privacy will definitely be a topic in our upcoming webinar, "2016 Employee Benefits Predictions," with experts Mark Stelzner and Bob Merberg. Join us on March 9!

Please note: We do not currently have a financial relationship with Castlight, but the company has been a client of ours in the past. Several of our clients use Castlight’s platform, in addition to other cost-transparency and health management tools. Accolade is a current client of ours.