A Multisensory Literacy Approach to Biomedical Healthcare Technologies: Aural, Tactile, and Visual Layered Health Literacies
by Kristin Marie Bivens, Lora Arduser, Candice A. Welhausen, & Michael J. Faris
The Evolving Landscape of Health Literacies
For those unfamiliar with the concept of health literacy, in this section we provide an overview of common definitions of health literacy, followed by our examination of relevant literature to highlight the importance of exploring embodiment, sensations, and sensibilities, which we suggest are required to navigate healthcare technologies.
Historically, literacy or fundamental literacy referred primarily to one's ability to read and write, as well as the level of competency in accomplishing these tasks. However, this conception of literacy as a decontextualized set of decoding skills was challenged by literacy researchers who argued that literacy is not simply a skillset but rather a social set of practices (e.g., Gee, 1989; Street, 1995; Yagelski, 2000). Thus, rather than having a single literacy that demonstrates one's competence, people engage in a plurality of literacies as socially situated practices in order to make decisions and do things in the world (including related to their health).
Concerned with patients' and the public's ability to understand, interpret, and use health information, public health professionals and organizations have turned to literacy to develop the concept of health literacy, which describes the "intersection of the fields of literacy and health" (Peerson & Saunders, 2009, p. 287). Health literacy is both a "repackag[ed]" term and a newer, dynamic concept (Nutbeam, 2000, p. 265; Peerson & Saunders, 2009) that has been defined as "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions" (Ratzan & Parker, 2000, p. vi), as well as a "set of skills needed to function in the healthcare environment" (DeWalt, Berkman, Sheridan, Lohr, & Pignone, 2004, p. 1228)—that is, as a particular kind of expertise and knowledge. Table 1 identifies some of the definitions that have been proposed by different public health-related entities.
Table 1: Definitions of Health Literacy
World Health Organization
"Health literacy represents the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health.… [H]ealth literacy means more than being able to read pamphlets and make appointments. By improving people's access to health information, and their capacity to use it effectively, health literacy is critical to empowerment." (1998, p. 10, emphasis original)
Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association
"Health literacy is a constellation of skills, including the ability to perform basic reading and numerical tasks required to function in the healthcare environment. Patients with adequate health literacy can read, understand, and act on health care information"—they can "read and comprehend prescription bottles, appointment slips, and other essential health-related materials required to successfully function as a patient." (1999, pp. 553, 552)
National Library of Medicine
"[W]e have defined health literacy as 'the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.'" (Ratzan & Parker, 2000, p. vi)
Canadian Public Health Association
"The ability to access, understand, evaluate and communicate information as a way to promote, maintain and improve health in a variety of settings across the life-course" (Rootman & Gordon-El-Bihbety, 2008, p. 11)
Australian Bureau of Statistics
"Health literacy affects not only a person's involvement in the formal health care system, but also decisions they make in the home, workplace and community. The level of a person's health literacy impacts on tasks such as reading dosage instructions on a package of medicine and also affects whether people seek screening or diagnostic tests." (2009, para. 2)
Centers for Disease Control and Prevention
"The Patient Protection and Affordable Care Act of 2010, Title V, defines health literacy as the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions." (2015, para. 1)
As these definitions suggest, literacy is no longer restricted to the ways that users construct knowledge and take action based on the knowledge that they acquire from written forms of communication. For instance, building on the National Library of Medicine's definition of health literacy (Ratzan & Parker, 2000), the Institute of Medicine (2004) included oral literacy—listening and speaking skills—as a component of the general literacy skills that they suggested are necessary for health literacy, essentially the same as communication skills. However, many of these definitions still rely on a cognitive understanding of literacy, largely ignoring bodies and senses and placing an emphasis on one's ability to interpret and use information.
While there is much to laud in these definitions—including an understanding that health literacy is social and influential in all aspects of life ("home, workplace, and community," as the Australian Bureau of Statistics [2009, para. 2] noted)—an understanding of literacy's embodied nature and the use of senses and sensation in literacy practices is noticeably absent. A multisensory approach to health literacies is especially important given the recent development and ubiquity of healthcare and information technologies.
Technology and Spaces of Health Literacies
New technological advances that communicate health-related information "require[s] both the science and the art of communicating health" (Ratzan, 2001, p. 211). Indeed, technology has changed not only the provision of healthcare, but also how healthcare information is communicated, which in turn shapes the decision-making processes of both practitioners and patients.
Prior to the information age, health information was generally disseminated from practitioners to patients. However, the omnipresence of healthcare information that can be accessed online, as well as the move over the past couple of decades towards a patient-centered model of care (Institute of Medicine, 2001), has pinpointed rhetorical, digital, and technical spaces that users and researchers alike can examine as public discourse sites about health. For instance, Amy Koerber and Brian Still's (2008) special issue of Technical Communication Quarterly on "Online Health Communication" explored the expansion of healthcare discourse to online spaces. Extending their work, Judy Z. Segal (2009) noted the rhetorical complexity in e-health spaces: "Internet health changes the world in which it appears, and the change is not adequately understood as a change in the quantity and availability of information as we knew it" (p. 355).
Blake Scott, Judy Segal, and Lisa Keränen (2013), too, wanted to understand more about online networks and the digitized health practices of individuals, citing online and digital spaces as a needed area for further research. Further, research like Christa Teston's (2016), which examined digitized and wearable mobile health technologies and their potential contribution toward a culture of health, critiques the ability of these devices to address health disparities among disadvantaged populations.
Teston's discussion of wearables, too, alludes to the emergence of increasingly blurred boundaries between biological bodies and technological apparatuses. For instance, some readers might be familiar with Aimee Mullins's 2009 TED Talk, My 12 Pairs of Legs, in which the American actor and athlete spoke about her many and varied prosthetic legs, characterizing them more as enhancements than replacements.
Lesser-known examples include participants in the transhuman biohacking culture, like Neil Harbisson. Harbisson is a colorblind artist from Barcelona who persuaded a doctor to implant a camera in the back of his head. The antenna, as he calls it, essentially lets Harbisson listen to colors by detecting the dominant color in front of him and translating it into musical notes (Peralta, 2016). Both of these examples challenge preconceived notions about what constitutes tactile literacy in ways that belie existing health literacy frameworks.
Mullins's and Harbisson's embodied and technological practices point to how health literacies, broadly defined, involve embodied, sensorial practices—a view of literacy that rhetoric, technical communication, and literacy scholars have increasingly advocated (e.g., Bellwoar, 2012; Fountain, 2014; Hawhee, 2015; Walters, 2014; Wysocki, 2010). While scholars like Kelli Cargile Cook (2002) and Stuart Selber (2004) have argued that literacies are multiple, plural, and layered, these conceptions have often ignored bodies and sensations. When they do discuss embodiment, as the New London Group (2000) has done, this concept is framed in terms of the mind, and thus literacy is still understood as a cognitive rather than whole-bodied sensuous set of practices (Cooper, 2010; Killingsworth, 2010). In reconnecting the body with its senses, we complicate notions of health literacy by attending to aural, tactile, and visual experiences in our case studies, showing how health literacy practices in the scenarios we discuss are both embodied and technological.
More specifically, in this webtext we focus on three communicative scenarios that interrogate the relationships between cognition, the body, and health-related technologies: aural through physiological monitors, tactile through insulin pump systems, and visual through flu maps. Through our discussion, we expose the artificial separations in each of these scenarios between the mind and the body while also identifying helpful dichotomies to coalesce and to synthesize into a whole that more fully reflects the current health communication situation—one that is technical, digital, and re-embodied.
Three Cases of Health Care Technologies and Literacies
Kristin Marie Bivens uses an echo methodological framework to examine the sounds of healthcare technology in two Neonatal Intensive Care Units (NICUs): one in the United States and one in Denmark. Her work explores physiological monitors that aurally track and biomedically surveil a baby's vital signs and focuses on two particular biomedicalized events: a baby's sneeze and a father's reaction to a monitor's noise. Based on her examples, she suggests non-experts need an aural layer of health literacy in order to more effectively navigate many healthcare spaces.
Lora Arduser discusses the practices of people with type 1 diabetes (T1D) using medical devices and other technologies (i.e., insulin pumps, continuous glucose monitors, smartphones, smartwatches, and the internet) to not only adjust but hack these technologies as a part of their daily work as expert patients. Her case study shows that by making certain hacks to their technologies (changes that medical providers or device companies explicitly suggest not making), people with T1D practice a tactile form of literacy.
Candice A. Welhausen analyzes a crowdsourced flu-tracking program, Flu Near You (FNY), which allows non-expert public audiences to report flu symptoms and visualize flu activity through the program's mapping features. She argues that participants' visual literacy practices are both enabled and constrained by theorizing the visual conventions used to communicate information about the spread of flu.