Ensuring data-driven wellness programs work for us, and not against us.

The Affordable Care Act has changed the landscape of health care in our country with comprehensive reforms that improve access to affordable health coverage and protect consumers from abusive insurance company practices. Insurers are now required to cover a number of recommended preventive services, such as cancer and blood pressure screenings, without cost-sharing. An estimated 137 million Americans have gotten better preventive services coverage as a result.

When designed carefully, employer-sponsored wellness programs can be part of this preventive approach.  Such programs offer the potential to improve employees’ health by delaying or avoiding many of the complications of chronic disease, to help improve the productivity of our workforce, and to slow the growth of medical costs.

Research on the effectiveness of these programs is ongoing and must continue to examine them closely to ensure they deliver on their promise of improved health. Close examination is particularly warranted when the primary drivers behind analyses and recommendations are not health professionals, but powerful algorithmic systems that gather and use data about employees and their families to assess the likelihood of certain health outcomes.

The opportunity for these data-driven wellness programs to identify new health-related patterns or insights is unprecedented, and big data systems are transforming our understandings of health and medicine in myriad areas. As outlined, however, in the recently-released White House report on Big Data: Algorithmic Systems, Opportunity, and Civil Rights, there are both opportunities and risks associated with such algorithmic systems, especially risks concerning privacy, civil rights, and the responsible and ethical use of data. This report is the latest released by the White House on “big data” and is intended to prompt conversation and advance these important issues. The topics of previous reports on data analytics included privacy, prices in the marketplace, and consumer protection laws.

An important element of ensuring that these programs work for us, and not against us, are the privacy and anti-discrimination protections enforced by Federal agencies such as the Equal Employment Opportunity Commission (EEOC), particularly those provided by the Americans with Disabilities Act of 1990 (ADA) and the Genetic Information Nondiscrimination Act of 2008 (GINA). In enforcing the ADA and GINA, the EEOC can examine how employers use employee data in their wellness programs to make sure our privacy is protected and that the data cannot be used to discriminate against us.

Recently, the EEOC released final rules on the ADA and GINA that provide guidance on how employers may use incentives to encourage employees and their family members to participate in wellness programs.  The rules clarify the laws’ requirements that employers provide notice to employees, their spouses, and other family members who provide health information as part of wellness programs and the requirements that such programs must be “reasonably designed to promote health or prevent disease.”  Other provisions prohibit an employer from requiring an employee or an employee’s family members to agree to the sale, exchange, sharing, transfer, or other disclosure of health information or to waive confidentiality protections as a condition for participating in a wellness program or receiving an incentive to participate.  Both rules also reference best practices for ensuring confidentiality, including establishing clear policies, training staff who handle confidential information, encryption of information stored electronically, and prompt reporting of data breaches.

Previously-issued rules also provide essential data protections.  For example, Title II of GINA prohibits employers from using genetic information in making employment decisions and restricts employers from disclosing genetic information, with narrow exceptions.  In addition, any genetic information that is gathered as part of a wellness program may only be disclosed to employers in aggregate terms.  Likewise, the ADA’s existing regulations require that employers give employees notice of what information will be collected, with whom it will be shared and for what purpose, the limits on disclosure, and the way information will be kept confidential.

These rules work together to encourage the use of data and innovation in wellness programs to improve employees’ health without increasing risks of data misuse.  Yet, algorithmic systems that make calculations based on “big data” can be vastly complex, and their operations are difficult for the average consumer, employee, or even employer to understand. This complexity could make it hard to know when one’s priv­­­­acy is violated or if one has been the subject of unfair bias. As these programs continue to grow in both their popularity and impact on our lives, it will be important that we develop the technical fluency to understand how they operate, so that we can thoroughly investigate any harm they might cause to the very employees they seek to help.

Understanding how our data is being gathered, used, and processed, and to whom it is disclosed will be key to ensuring that we utilize wellness programs in a manner that protects privacy and ensures equal opportunity. The White House is deeply committed to ensuring the Federal government is on the forefront of using technology to advance health, civil rights, and opportunity.

Melissa Goldstein is Assistant Director for Bioethics and Privacy at the White House Office of Science and Technology Policy

Jason Schultz is Senior Advisor to the United States Chief Technology Officer at the White House Office of Science and Technology Policy