Wear Your Heart on Your Sleeve

Mental health wearable devices might help users, but they also raise ethical concerns around the collecting of psychophysiological data.

Max has struggled with anxiety all his life. He uses a combination of two devices, one to measure his vital signs such as heart rate and breath, and a second that responds to irregular readings from the first. This second device provides a mechanical buzzing stimulus, and Max uses it for about ten minutes whenever he feels overwhelmed. He believes that this short circuits his anxiety attacks by shifting his brain’s focus onto his body and engaging his “non-emotional” brain as he calls it. These devices are like other popular wellness wearables such as the Fitbit. However, some of these devices come with additional algorithms that interpret the emotion states of the wearer based on psychophysiological markers such as heart rate, breath rhythms, and skin temperature. Among the range of devices available, each running proprietary algorithms, some devices skip the monitoring and move directly into intervention based on psychotherapeutic practices.

The ACT model lends itself to a range of interventions for improved mental health, from clinical role playing with therapists to wearable-led prompts that are activated when individuals are experiencing increased levels of stress, anxiety, or panic. 
Max has often felt like everything, from getting out of bed to going to work, triggers extreme anxiety. He lives with his father and works at a firm that allows him the flexibility of working from home. His situation is complicated by the fact that he is also on the autism spectrum. Given the degree of physical distress that he regularly experiences from sensory overstimulation, his current therapist has been working with him on autogenic training, which involves helping him relax and develop higher levels of tolerance to triggering circumstances. One of the biggest challenges Max has faced has been building his self-awareness to a degree where he is able to identify the effect his environment has on him. When Max’s therapist attempted to get him to practice cognitive behavioural therapy (CBT), a popular psychotherapeutic approach, Max was encouraged to consciously focus on the negative thoughts or sensations he was experiencing. Given his profound visceral response to stressors that were sometimes not even physically present in his environment, Max’s anxiety got worse.

He had better success with the set of tools known as the Acknowledge and Commitment Therapy protocols (ACT), an approach that has been gaining popularity among psychologists working with treatment-resistant and chronic mental health mood disorders such as depression and anxiety (Hoffman, Sawyer, and Fang 2018). ACT comprises practices that are rooted in mindfulness, and it allows people to acknowledge their own distress rather than try to actively and consciously replace the behaviours that spring from this distress. The ACT model lends itself to a range of interventions for improved mental health, from clinical role playing with therapists to wearable-led prompts that are activated when individuals are experiencing increased levels of stress, anxiety, or panic. Many of the wearable devices for mental health improvise off an ACT model to improve the user’s ability to be mindful of their body and the impact of their emotions on their body. Some devices also integrate the information around the psychophysiological markers with subjective input from individuals about environmental and emotional context and content that predicate bodily responses, therefore allowing for increased self-awareness over time.

A recent report projects that sales from medical wearable devices will generate over $14 billion by the year 2022. While versions of devices are available for sale to consumers online, some such devices are used as part of employee wellness programmes within organizations as part of their occupational health and safety practices.

Groups of consumer advocates and interdisciplinary experts have banded together to create a code of ethics that could be adopted as a baseline for the ethical design of intelligent devices like wearables (IEEE 2016). James, a participant in my research and a data scientist who runs an independent technology consultancy in Australia and is also involved in projects with the Australian government around mental health and data privacy, echoed the need for stringent regulations around the data being collected by these devices. He asserted that while current algorithms might seem innocuous in their diagnostic abilities, future developments around integration with health records and increasing privatization of health insurance might set in motion discriminatory practices against vulnerable groups of people, in the interest of capital gains.

The regulatory frameworks that govern the data collected through these devices vary by geography; most devices that were considered for this study did not seek centralized medical board approvals and were positioned as consumer wellness devices, rather than as medical monitoring devices. This allowed the device makers to promote the benefits derived from usage while omitting the risks associated with the unsecured continuous collection of sensitive information that could be used by organizations and corporations One device, for instance, is marketed to employers with the objective of reducing employee absenteeism by flagging mental distress. While on paper, these initiatives claim to improve well-being, the employee wellness initiatives that use these devices are designed to improve the productivity of employees, ultimately serving the purpose of the employers.

Two of the researchers designing mental health wearable technologies whom I interviewed did not see the need for concern around technologies that intervene in mental health through the continuous collection of psychophysiological data. They advocated on behalf of users who benefit from the use of these technologies, whether the potential for reduction of error in medical diagnoses caused by fatigue amongst doctors, or the increase in self-awareness enabled by a product that draws attention to an easily controllable behavior such as breathing or to a simple activity like shifting position while sitting at a desk.

For those who can afford these devices, which can cost anywhere from $100 to $200, the perceived benefits of a tangible and mobile coach is the driving reason behind device usage. The ability of the devices to provide a dynamic model for the management of distressing emotions sets them apart as tools that hold promise for users who struggle with the side effects of pharmaceutical interventions. For about 68 percent of the 1,681 online reviewers of one such device, the wearable had helped them positively in feeling well. The participants I spoke with firmly believed that their devices effectively supplemented the pharmaceutical interventions and psychological therapies that they had sought out in the past. Eventually, they shared a sense of powerlessness against the emotional discomforts that their mental health triggered. Their devices, then, symbolized a simple, visible, and tangible tool to help make their everyday lives a tad more manageable. Yet, the ethical considerations of marketing wearable technologies for improvements in mental health are complex (e.g., Bauer et al. 2017), and for the most part ignored by the corporations that back the sale of these devices directly to consumers. As an ex-employee with one such company succinctly summarized, “In my opinion, the sensors that can do really meaningful and accurate readings are still too expensive for the consumer market, and no one’s cracked quite how to correlate the data in a way that will provide real value to users.”

Note: names of participants have been changed to maintain their anonymity.

Antoinette Pavithra Noel is a research scholar in cultural anthropology at Macquarie University, Sydney. Her research interests lie at the intersection of technological developments and health care practices.

 Cite as: Noel, Antoinette Pavithra. 2018. “Wear Your Heart on Your Sleeve.” Anthropology News website, July 20, 2018. DOI: 10.1111/AN.926

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