#transform(the underlying systems of digital)health
Electronic health records, quantified health, and diagnostic tools are all ‘digital technologies’ that co-create meaning and knowledge throughout the medical industrial complex. The initial connection between digital humanities (DH) and medicine is an easy association to make: DH works with data, with structures of data, with big data, with various forms of tech. Medicine and health are already ‘digital,’ and create and use data and data structures in relationship to various technologies and bodies. Easily, digital humanists can investigate these formations.
We can also untangle the underlying structures of the U.S. medical industrial complex in order to create new formations founded in justice and care. This is where #transformDH is foundational to the kinds of work that can be done in these intersecting fields. As an academic guerrilla movement invested in transformative scholarship that works for social justice, accessibility, and inclusion, #transformDH’s ideals are exactly what is needed to investigate and change not only how we practice and study medicine and health, but to change the structures of power within the larger medical industrial complex.
“What counts?" Fiona M Barnett asks, "...what is the effect when the conversation is not about recognizing similarity across differences or disparity in order to build a common ground, but rather, about declaring something to be unrecognizable within the confines of a field?” The U.S. medical industrial complex is founded on preventing difference, on creating normative categories of health, illness, and wellness as well as normative bodies and minds. These structures create invisibility, an inability to recognize “similarity across difference or disparity.”
To understand how this works, let’s talk “health.” The overarching public health assumption is that the overweight patient is not taking enough personal responsibility, and not following doctor’s orders. The belief is that people are individually responsible for their behaviors and therefore are at fault if they don’t ‘choose wisely.’ The idea that having a ‘fit’ body somehow prevents disease means that individuals must “take responsibility” to continuously monitor and modify their “life style” for health reasons. Therefore, it becomes a public health concern to exercise more, give up our favorite foods, stop eating sugar, salt, fat, and high fructose corn syrup. The thought is that even though we know we should eat better and get more exercise, it is hard to make the transition from having that knowledge and practicing it. This becomes fact: individuals are somehow always responsible for their failed health or disability.
Their solution? Give patients fitness trackers and they will somehow miraculously lose weight. Somehow this will motivate people to stop being ‘couch potatoes,’ and hold them responsible for their own health.
My hypothesis, a #transformDH approach, is different: the use of wearable fitness trackers/activity trackers for medical interventions into “healthy” bodies is unethical. I begin this approach by questioning and dismantling the histories and systems that created and produced the fitness tracker in the first place.
The Coerced Quantified Self
In addition to individuals purchasing and using fitness trackers on their own, health insurance companies, employer wellness programs, and small businesses without employee wellness programs have been providing financial incentives and rewards for wearing activity trackers as a way to encourage behavioral changes in activity levels related to overall health, primarily as a way for employers to save money under the guise of individual health improvements. Many of these programs set expectations for amount of steps and activity needed on a daily basis: 10,000 steps/day and competitions with co-workers are two big ones.
In reality, these programs collect data for later analysis; they do not automagically change behavior. Essentially corporate and health insurance wellness programs that rely mainly on fitness trackers are running a large experiment to see if trackers actually work to make people more healthy and therefore companies more profitable by reducing health insurance expenditures. This is unethical.
Some people feel coerced to participate through office pool shaming, where the person who gets most steps wins a prize. Other people have undisclosed illnesses that prevent them from fully engaging, while still others are prescribed medications that cause them to gain weight: the benefit of the medication to the illness outweighs weight gain as a side effect. And finally, many people have physical limitations, and therefore might have difficulties with 10,000 steps per day.
Should individuals eat fast food, or drink a soda, or not meet the required number of steps for their ‘team’ to win the office health pool, they become individually responsible for all of their ill health, which then can become medical non-compliance, with potentially serious repercussions for clinical treatment. By defining health as an individual behavior it removes responsibility from the community. In doing so, the state begins to legalize morality claims about the choices people make, from the “sin’ taxes on tobacco and alcohol, to the recent attempts to do so with soda and fried foods. These policies are being used as a strategy to control people’s choices, with the hope that this will reduce the “obesity epidemic.”
However, individual behaviors do not take into account the disparities “in the burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations.” These ideologies about health are actually the structural and functional histories of discrimination towards particular bodies to maintain population control.
By looking at the structures behind the fitness tracker, we understand that mandating wearable fitness trackers for medical interventions into health is unethical. Our focus on the implicit, less recognizable issues within the structures of health care enables us to understand how the system is designed to create unequal care, where access, diagnosis, and treatments vary considerably.This changes how we look at the digital technologies of the fitness tracker. Digital technologies contribute to already existing disparities. Discourses of power and control have real, material consequences.
A #transformDH approach: looking behind the technology to the larger historical, cultural, and structural foundations extends basic ethics on human subjects outwards to include dehumanizing employee data collection with particular pre-set unrealistic standards that have nothing to do with health. The combination of individualism, privatization, and profit are not only inappropriate, but violate basic ethical principles.
While it seems like trackers are all about convincing people to convert personal knowledge about ‘health’ into action, it instead is about the acquisition of data points to hold marginalized individuals responsible for systemic inequalities against them, and therefore enable control over these same populations. This is violence: from the perspective of a person coerced to use the tracker as part of a corporate wellness program, the trackers become agents of a state that is waging violence against them and their bodies. Therefore, it is coerced experimentation, and reinforces the historical violences of both the medical industrial complex and the state.
Imagine this: to have healthy bodies, we must move away from the enforced blame on individual choice, and turn to community based health design. We must move from the idea of the individual to community based constellations of care that include creating access to safe, affordable food and water, reliable transportation, safe sidewalks, and real accesible health care.If the community can design the spaces and places they live and work in, healthier people will abound.
"#transformDH is an academic guerrilla movement seeking to (re)define capital-letter Digital Humanities as a force for transformative scholarship by collecting, sharing, and highlighting projects that push at its boundaries and work for social justice, accessibility, and inclusion.” (http://transformdh.org/about-transformdh/)
Fiona M. Barnett; The Brave Side of Digital Humanities. Differences 1 May 2014; 25 (1): 64–78. https://doi-org.proxy-um.researchport.umd.edu/10.1215/10407391-2420003
Steve Aldana, Well Steps: Wearables and Wellness: The Complete Guide, June 13, 2016. https://www.wellsteps.com/blog/2016/06/13/wearables-and-wellness-programs/
Doug Roe, Wearable Concerns: Lifestyle vs. Medical-Grade Devices, Sept 7, 2016 https://www.meddeviceonline.com/doc/wearable-concerns-lifestyle-vs-medical-grade-devices-0001
See alsoAnne Cong-Huyen’s blog post “#mla13 “Thinking Through Race” Presentation” to understand more about how #transformDH came to be, and explore its founding pricinciples https://anitaconchita.wordpress.com/2013/01/07/mla13-presentation (viewed 1/05/2018)
"Digital humanists have heard numerous recent calls for the field to interrogate race, gender, and other structures of power,” says Miriam Posner: “to truly engage in this kind of critical work, I contend, would be much more difficult and fascinating than anything we have previously imagined for the future of DH; in fact, it would require dismantling and rebuilding much of the organizing logic that underlies our work." Miriam Posner, What’s Next: The Radical, Unrealized Potential of Digital Humanities, DH Debates, 2016 http://dhdebates.gc.cuny.edu/debates/text/54