How Wellness Programs Threaten Privacy, Part II
As workplace wellness programs become increasingly common, we hear more questions about whether they fulfill one of their main stated objectives--reducing healthcare costs. We don’t hear nearly as much about the non-financial effects on the employees who must participate in these programs or face significantly higher health insurance costs. In a previous post, I discussed how proponents of wellness in the workplace muddle the conversation about privacy when they don’t talk about the many and varied recipients of participant wellness data. We should care about this because wellness data can be used to monitor and manipulate program participants in ways that raise privacy and ethical concerns, as I discuss in this post.
Wellness programs touch on at least three aspects of privacy: informational privacy (ability to control disclosure of information about oneself), physical integrity (control over one’s body), and decisional autonomy (ability to make decisions without undue influence). Let us take a brief look at each of these.
Most of the time, when we think about privacy, we think about personal information. Wellness programs affect informational privacy in two ways. First, these programs collect health and lifestyle data about more individuals. In fact, the goal of financial incentives and other “engagement” techniques is to enroll as many employees and their covered family members as possible in wellness programs and to collect their data through these programs.
Second, wellness programs increase the amount and types of data collected about each participant, the types of analytics conducted with the data, and the dissemination of the data. To qualify for participation incentives, employees and their family members covered by the policy must complete questionnaires, document gym memberships, show that they have had drug tests or preventive screenings, or make available device and app data showing qualifying activities. To qualify for health-contingent incentives participants must undergo biometric screenings, take drug tests for nicotine, share relevant device or app data, or provide other information that documents compliance with any standard instituted by the wellness program.
Analytic algorithms may combine the data collected through health risk assessments, screenings, and fitness trackers and apps with healthcare claims and public data, such as local weather or type of building or business in a specific location. An analysis of the combined data can reveal where wellness program participants spend time; work, leisure and exercise patterns; categories of food places visited; and more. For example, a fitness tracker with GPS capability may reveal an employee’s running route, or her visits to a fast food restaurant every weekend for lunch.
Even if employees want to learn about the way wellness programs affect their informational privacy, they probably don’t have any way of doing so. The rules governing wellness data and analytics, identities and locations of data recipients, and ways in which wellness data can be combined with public and private data are murky. In addition, as repeatedly happened with other data in other contexts, wellness data can be used in unexpected ways and for unrelated purposes.
Wellness programs that measure physical characteristics or track exercise activity affect the extent to which we can control access to our bodies.
Physical measurements can be more or less invasive and can take place as part of enrollment in a wellness program or as part of qualifying for wellness incentives. The most invasive measurement involves puncturing the skin for blood draws to measure cholesterol or blood sugar levels. Somewhat less invasive are tests that seek to establish what goes on inside the body without puncturing the skin, such as blood pressure measurements and breath-, urine- and cheek swab-based drug tests. The least invasive are measurements of externally visible characteristics, such as height, weight and waist circumference.
When employers subject wellness program participants to physical measurements that have nothing to do with job requirements, they ask employees to permit a violation of personal boundaries that previously took place mostly within a healthcare setting. We allow such violations when we get healthcare knowing that doctors are subject to long-standing ethical principles to put the patient’s interests first. Employers have other priorities, even when they claim that their people are their most important asset.
In the past, individuals made decisions about medical treatment and health-related behavior by themselves or together with their physicians. Patient decisional autonomy, or the ability to choose medical treatment, is a fundamental tenet of medical ethics. Wellness programs affect these decisions by linking financial incentives to medical treatments and outcomes. For example, incentives tied to achieving certain levels of cholesterol, BMI (a measure of obesity) or blood pressure affect decisions on whether to take drugs or accept other medical interventions in order to achieve the level prescribed by the employer’s health plan.
An additional factor affecting decisional autonomy in wellness programs is the current popularity of gamification and social influencing. These techniques, derived from psychological experiments and behavioral economics, are specifically designed to manipulate behavior, often without the individual being conscious of how it is done. For example, Derek Newell, CEO of a wellness technology company Jiff, said that as health behaviors, including activity level and food intake, become passively monitored, “[w]e can watch that data and start to learn how to influence people's behavior in real-time. That's the big change employers are interested in.” This type of manipulation raises ethical questions. There is an inherent power imbalance in the employer-employee relationship, and the interests of program participants, employers, and wellness vendors are not necessarily aligned.
Why be concerned about the privacy and ethical issues raised by wellness programs? After all, there are occasional news stories about people who benefited from one or another aspect of these programs. Someone who hadn’t seen a doctor in years discovers through a workplace screening that they have high cholesterol or high blood pressure and uses the information to lower the risks of heart attack or stroke. Someone who is obese finally gets the motivation to exercise and lose weight. Isn’t this all good?
The anecdotes may be interesting, but they mask the fact that these programs involve monitoring and manipulating personal lives of millions of people, many of whom may not benefit at all, and some of whom may be harmed through overdiagnosis, overtreatment, inappropriate treatment or misuse of their data. Supporters of workplace wellness claim that employers have the right to perform such monitoring and manipulation because they pay most of the cost of employee health care. However, even in a world of increasingly blurred boundaries between personal and professional lives, wellness programs take the question about what employers can demand of us to a whole new level.
Originally published on LinkedIn on January 16, 2015