Sarah Ann Singer
Abstract: This article builds on work by Robert Johnson and Jordynn Jack to argue that a feminist rhetorical approach to user-centered technologies involves three key principles: power, simplicity, and individuality. To demonstrate, I rhetorically analyze Women and Their Bodies, which uses plain language, personal stories, and clear instructions to empower users to transform themselves and the healthcare system. Then, I show how a current health information sharing platform, MyLymeData (MLD), employs the same rhetorics of user-centeredness but does not, in fact, share the same goals for transformative access. Even though MLD appears to be system-disrupting, it requires users to submit their data in exchange for access to the platform’s data repository. I conclude by imagining what a truly user-centered version of MLD might look like and considering directions for future research.
Keywords: data, health information sharing, Lyme disease, user-centered technology
In the previous sections to this course, we have discussed the problems women face in their encounter with our medical system. We have been given inadequate and often incorrect information on how our bodies function. We can’t get birth control, so thousands of us die each year from illegal abortions. Childbirth is often a tarrying and inhumane experience. These problems are not mistakes, they are results of a system which is designed to make profits, maintain a professional elite, and treat certain sick people, rather than deal with the problems of human beings and their illnesses.(Women and Their Bodies 179, emphasis added)
The authors of Women and Their Bodies cautioned readers about the growing power of the “healthcare economy” long before such a term was in circulation. Although the authors encourage users to further their health education, they warn them to be wary of particular organizations, insurance companies, and, ironically, doctors. The authors characterize Ortho and Tampax as “capitalist organizationsp” [sic] that “[push] their own products for profit” (5), and they contend that Planned Parenthood “pushes population control and birth control pills” (5). The authors alert users to insurance companies’ goals and practices, noting that healthcare “will be the nation’s largest industry” by 1975 (182). They explain that doctors earn additional profits from Medicare’s “usual and customary” billing system (186), and they examine evidence from a range of sources to reveal how the privatization of hospitals prevents low- and middle-income patients from seeking care (186).
But the authors could not have anticipated that health information is the primary capital of the twenty-first century healthcare economy. Today, health information sharing—purposeful and accidental—is a critical concern for patients, many of whom rely on online health communities and healthcare technologies to manage their conditions. Lori Beth De Hertogh notes that the new “interactive features” in online health spaces, such as discussion boards, prompt users to “collectively produce and share health-related content” (“Feminist Digital” 486). For many patients, these features are critical. Users compile their own health data in apps, which can help them identify trends and causes for concern. Users also access other people’s health data by reading discussion board posts and examining digital repositories that compile disaggregated data.
In an age of chronic, ambiguous, and contested health problems, sharing health data—which includes culling anecdotes, doctor’s names, medical tests, and validated and experimental treatments—is a necessary strategy for gathering information. Patients with these challenging conditions rely on other patients’ data because traditional clinical studies do not provide cures to their health problems. Women, in particular, are vulnerable yet empowered in their search for adequate healthcare and health information. In Tasha Dubriwny’s words, they are forced to “grapple with and make active decisions” based on a range of sources with ambiguous credentials, including websites, magazines, and advertisements (6). These sources are made more confusing by “[n]eoliberal marketing strategies,” which “have effectively blurred the line between medical research and marking of pharmaceutical drugs and illnesses” (147).
Ostensibly, patients’ participation in data sharing does not adversely affect their ability to obtain healthcare, render them “noncompliant,” nor interfere with their current treatment plans. Ill individuals may see sharing their health information as less risky than not sharing their information. Many chronically ill patients worry about being perceived as drug-seekers, and consulting with too many medical providers—even innocently—may be seen as suspect. So they share their data and examine other patients’ shared data. However, Marissa J. Doshi and other scholars show that data sharing may have unanticipated consequences (197). In a study of over 100 of the most popular Google Play apps, researchers found that more than 70% shared users’ data with outside sources, such as Amazon and Google (Grundy et al.). The study found that data sharing in health apps is “routine,” and it is considered a “legitimate business practice” despite issues with consent, privacy, and ethics (n.p.).
Data sharing in apps, websites, and repositories, is an important issue with which rhetoricians must grapple. To date, scholars have shown a sustained interest in the rhetoric of online health information, considering which sources are most valuable for patients and how patients are prompted to engage with these sources (Kopelson; Segal, “Internet”). Recently, feminist rhetoricians have analyzed online communities in which users collectivize around particular health concerns (Beemer; De Hertogh, “Reinscribing”; King; Owens, Writing), wearable technologies (Hutchinson and Notovtny; Jack), and the rhetoric of healthcare product marketing campaigns (Woods). They are also investigating the design of online health communication (Melonçon and Frost) and ethical, intersectional research methods for studying online health spaces (De Hertogh).
As this research indicates, patients are shifting away from a manual-centered health information sharing system, in which texts such as Women and Their Bodies and its better-known version, Our Bodies, Ourselves (OBOS), were central. In our twenty-first century world, especially one in which OBOS is no longer being updated, women are consulting the internet instead of manuals to learn health terminology, determine the most effective treatments, and keep track of their symptoms. Patients, accordingly, must learn to navigate a confusing digital terrain replete with persuasive appeals. As they decide which apps, websites, and platforms are worthy of their attention (and data), Robert Johnson’s framework for classifying user-centered versus user-friendly technology remains a helpful guide. Building on Johnson’s framework and Jordynn Jack’s embodied feminist rhetorical approach to examining mobile technologies, I argue that a feminist rhetorical approach to user-centered technologies involves three key principles: power, simplicity, and individuality. To demonstrate, I first show how the principles work by rhetorically analyzing Women and Their Bodies, which I assert is a truly user-centered text. Then, I show how a current health information sharing platform, MyLymeData (MLD), employs the same rhetorics of user-centeredness but does not, in fact, share the same goals for transformative access. Even when MLD and other technologies appear to be system-disrupting and claim to “help a user to manipulate parts of the system, negotiate the system, or change the system even in a small, local way,” they require users to submit their data in exchange for access (Seigel 74). I conclude by imagining what a truly user-centered version of MLD might look like and considering directions for future research.
From Manual to Digital: User-Centered Technologies and Women and Their Bodies
As Marika Seigel and Sarah Hallenbeck have shown, there have long been manuals about women and their bodies, most of which circumscribed their agency and opportunities for engagement. Although it is celebrated for many innovations, Susan Wells argues that OBOS was the first manual that prompted women to “investigate their own bodies directly” (185). As Seigel notes, the origin of the word “manual” means “kept at hand” (31); now, our mobile phones are kept at hand, easily accessed whenever a health crisis (or random question) emerges. Seigel argues that manuals often “assume uncritical acceptance of the technologies and processes about which they instruct the reader” (32) and “[assume] an expert-notice relationship between the rhetor and reader” (32). Alternatively, online health information sources offer users a range of perspectives. The Centers for Disease Control and Prevention (CDC) and World Health Organization (WHO) websites, for instance, aim to educate the lay people about public health epidemics and adopt a similar expert-novice relationship. However, social media platforms, blogs, and digital health information repositories often frame users as experts—or at least equals—and engage them by invoking the user’s knowledge and experiences.
One thing that manuals and online health sources have in common is the centrality of the user. In Robert Johnson’s book, User-Centered Technology: A Rhetorical Theory for Computers and Other Mundane Artifacts, he theorizes the role of the user and considers how users “unwittingly surrender knowledge and power due to our lack of reflection on our mundane interactions with technology” (10). Johnson defines users quite simply as “the audiences of technology” (xv). User-centered technologies, he argues, offer users an opportunity to be “active participants” in the “negotiated process of technology design, development, and use” (32, emphasis original). Marika Seigel contends that Women and Their Bodies, the first version of OBOS, is truly user-centered and, accordingly, a model of a system-disrupting or system-transforming technology. In other words, the authors of Women and Their Bodies hoped that users would not simply learn to identify their body parts, but also to advocate for themselves in clinical environments, create additional content, and teach the content to other women. Seigel focuses on the chapter on pregnancy, which aims to “[disrupt] the user’s functional engagement with the components (or subsystems) of the healthcare system” (74) and, as such, “overwhelmingly focuses on questions of definition and evaluation” (76). In this essay, I extend Seigel’s work by reading across the text to consider how the authors invoke power, simplicity, and individuality, aiming to empower users to transform themselves and the healthcare system.
Women and Their Bodies is merely 193 pages long and divided into twelve sections. Throughout the “course,” as they call it, the authors encourage users to draw on their own expertise and use “more deliberative than prescriptive” instructions to teach users about their bodies (Seigel 81). These rhetorical moves are challenging patients’ power (and lack thereof in most other cases), and they align with the ultimate goals of feminism: to resist and “[call] attention to” gendered, raced, and classed power dynamics (De Hertogh, Lane, and Ouellette 12). Discussions of power appear throughout Women and Their Bodies. In the introduction, the authors discuss how the users were “an integral, participatory force in the process of writing” (Johnson 31). There is a long section about the iterative writing, drafting, and revision process, which involved groups of women from across the Boston area. The authors note that the text is “not final” (3) and “not static” (3), recognizing that it “should grow and include other topics” based on users’ needs (4). To further empower users, the authors urge them to use the manual “as a tool” for prompting “discussion and action, which allows for new ideas and change” in an effort to ensure that users’ needs are met (4). Similarly, the content of the manual centers users’ ambitious needs and goals: to “act together on our collective knowledge to change the health care system for women and for all people” (4).1 Whether the authors are discussing the “capitalist medical care system,” which they emphasize is “no more dedicated to improving the people’s health than can General Motors become dedicated to improving people’s public transportation,” or the doctor-patient relationship, they aim to empower users to understand the institutions that govern U.S. healthcare and make their own decisions (8).
Similarly, the authors aim to simplify complex medical terminology and information so that it is easy to understand, but they do not undermine users in the process. The authors critique the “pseudoscientific jargon” that allows doctors to “set themselves off from other people” (8) by offering relevant medical terminology alongside relatable analogies. In the “Women, Medicine, and Capitalism” section, for instance, the authors discuss female sex organs and suggest methods and reasons for self-investigating them. Specifically, they offer a short, friendly description of how a reader can palpate her cervix:
You can touch your own cervix; it feels like a large nipple with a small dimple in its center, extending from the top part of the vagina way towards the back. The uterus changes position during the menstrual cycle, so where you feel the cervix one day may be slightly different from(12)
where it will be next! The entrance into the uterus through the cervix is very small, about the diameter of a very thin straw. This is the little dimple that you feel in the middle of the nipple.
The description is conversational rather than technical, clearly oriented towards the user population: women who were self-aware but unfamiliar with their reproductive anatomy. Readers are addressed in second person. They “can” touch their vaginas—they are able to and empowered to if they wish, but they are not forced to do so. The description of the cervix as a “large nipple with a small dimple in the center” and the entrance to the uterus as “a very thin straw” are colloquial and would have been easily understood by users at the time. The addition of an exclamation point signals the surprising joy that can be found in learning about one’s body, which is another affordance of self-investigation that benefits the user personally. Later in that section, the authors note, “We emphasize that you take a mirror and examine yourself. Touch yourself, smell yourself, even taste your own secretions. After all, you are your body and you are not obscene” (14). Here, the language is more directive, but the authors know that most users have internalized overwhelming shame about their bodies, particularly their vaginas, and they must prompt users to work through this shame to become more educated and, thus, be able to be more empowered as they make decisions about their healthcare (Adams). By offering approachable yet explicit instructions for investigating their sex organs, the authors show how a plain language approach to healthcare instruction can be simple without being reductive.
Moreover, the authors emphasize users’ individuality by sharing a range of personal stories from contributors and encouraging users to figure out what works for them specifically. The authors explain that the paper on sexuality, in particular, includes many personal stories “because we felt that our own voices, our own voices, our own histories rang the clearest and truest and helped us reclaim the mysterious topic of sexuality as familiar and ours” (16). They note, “By talking to each other, taking support from each other, we can set our own standards which will bear the mark of sanity and individuality” (18). The authors do not simply make these bold statements; instead, they operationalize them by sharing vignettes about fraught topics, such as masturbation (23) and sexual fantasies (30).
The vignettes present a wide variety of experiences, including instances of sexual pleasure, confusion, and violence, aiming to account for common experiences among women through personalized stories. In the section about masturbation, for example, the authors emphasize, “If you have never masturbated, don’t feel like you are confined to these techniques. Finding what you like to do is what it’s all about” (23, emphasis original). These brief examples make it clear that they do not simply want users to replicate other users’ techniques or experiences, but instead to pay attention to their own individual needs in order to increase their sexual pleasure and overall happiness. Later on, the authors clarify that the manual is not merely a how-to guide for pleasing women; instead, it is a course designed for personal and collective empowerment. They address “any men who happen to read” the course directly, noting that it is not a “marriage manual” (37). Instead of experimenting with the advice offered by the course, the authors implore men to “change [their behavior” and “start doing half the housework” (37). This is yet another instance in which the authors reinforce the importance of individuality and using the manual to discover themselves and their needs, not to please others nor find a universal approach to doing so.
In all, Women and Their Bodies functions as both a manifesto and a manual, offering critiques of the capitalist, “pay-as-you-die” (7) healthcare system alongside accessible instructions for how users might explore their own bodies and personally benefit from reading the text. Unlike Women and Their Bodies, which aimed to convince users to self-investigate as a way to counter the “corporate capitalist entities” (7) that make up our healthcare system, data-sharing technologies are created and sustained by the medical industry. These apps, websites, and health data sharing platforms deploy a rhetoric of user-centeredness that is eerily similar to that of Women and Their Bodies, emphasizing qualities such as power, simplicity, and individuality, but they have a different goal: to earn money. Chronic disease patients in particular are targeted because chronic diseases are expensive and new technologies appear to make it easier to coordinate care between multiple providers (Vest and Gamm 292).
In the next section, I discuss MyLymeData (MLD), a data collection platform for individuals diagnosed with Lyme disease. Lyme disease has been studied for almost 40 years, but debates have emerged around its name, diagnosis, treatment, and prognosis. Lyme Disease comes from Borrelia burgdorferi, a bacterium transmitted to humans when they are bitten by infected deer ticks. Theoretically, Lyme disease is simple to diagnose and treat, and recovery should begin as soon as it is treated. According to the most recent clinical guidelines, infected individuals who are diagnosed quickly after their initial infection and treated with antibiotics for fourteen to twenty-one days are expected to recover completely (Wormser et al.). However, there is no consensus in the medical community about how to diagnose or treat persistent, ambiguous Lyme disease symptoms, which impact 10-20% of patients (Rebman et al.). As medical anthropologist Mara Buchbinder notes, diagnosis may be “the fundamental explanatory act in medicine” (9), and patients seeking a post-Lyme disease diagnosis (often called Chronic Lyme) must often rely on “rhetorical resources” to prove their suffering and negotiate treatment plans (Segal, Health 75). These disputes are most evident on platforms like MLD, which have sprung up because of the debates around this contested condition. Accordingly, I consider MLD through two perspectives: as a user and as a rhetorician. This dual approach helps me clarify what’s at stake: it is almost impossible for weary patients to distinguish between true user-centeredness and a rhetoric of user-centeredness. In turn, patients end up sharing their data in ways that do not serve them.
About MyLymeData (MLD)
When I first came across MyLymeData (MLD), I felt energized for the first time in months. It seemed like website creators knew me and my Lyme disease story and were speaking directly to me. I was immediately drawn to the text in the center of the homepage, which reads, “IMAGINE A WORLD where people with LD are diagnosed and treated correctly and go back to living their lives” (see Fig. 1; emphasis original). I have imagined this world for ten years, since I was diagnosed with Lyme disease in November 2009. I am one of the 300,000 or more people who are diagnosed with Lyme disease each year, and I am one of the 10-20% of patients who are affected by long-term “subjective symptoms,” such as fatigue, joint pain, headaches, and sleep disturbances (Rebman et al.).
Reading on, MLD tells me, “YOU CAN BE PART OF MAKING THIS HAPPEN” (emphasis original) and implores me to “Add your Lyme data to MyLymeData to help find a cure for Lyme disease.” As a Lyme disease patient and researcher who studies the rhetoric of Lyme disease, I am doubly intrigued. I would do almost anything to prevent others from suffering: from negotiating with well-intentioned but disbelieving doctors, from taking drugs that cause intolerable side effects, from spending thousands of dollars on medical tests, from sleeping away their youth. I have worried about my treatments, which sometimes caused more harm than good: antibiotics, anti-inflammatories, immuno-suppressing biologics, elimination diets, exercise, and other complementary and alternative therapies. I have dreamed about “living” my life and recovering from Lyme disease. I have felt so powerless over my own body—which my doctors tell me is my responsibility to control—and it is exhilarating to think that I can use my experience to help others. And, perhaps more importantly, to help myself. The next paragraphs explain the goals of the website, but I have already clicked the bright orange “Count Me In!” button to sign up. This is the moment I have been waiting for: I can be “counted on” to share my experience of suffering, which, more importantly, will finally “count” for something, towards something better.
MLD and other advocacy groups, such as the International Lyme and Associated Diseases Society (ILADS), have coalesced and aim to satisfy patients’ unfulfilled needs: to feel heard, affirmed, and reassured as they negotiate care for Chronic Lyme. Patients and their allies face a difficult crossroads. Although researchers in fields such as entomology, public health, rheumatology, and infectious disease are studying Lyme disease, there have been only a few clinical trials. Some argue that the clinical trials that have occurred have been too limited in scope and that the inclusion criteria are so strict that most Lyme disease patients cannot participate (Johnson, Shapiro, and Mankoff n.p.). Others argue that the Lyme disease clinical diagnosis guidelines are too strict, preventing ill people from receiving a Lyme disease diagnosis (Johnson and Stricker). Since there are no simple cures for Lyme disease, patients are left with one option: they can take comfort in sharing their pain, their stories, and their data to prevent others from experiencing the same suffering. This makes Lyme disease patients prime candidates for sharing their health data with platforms like MLD.
MLD claims that its immediate goal is quickly producing research that improves Lyme disease diagnosis and treatment processes. To achieve this goal, MLD collects, synthesizes, analyzes, and shares users’ health data with selected partners. Throughout this process, users are both an “integral, participatory force” (Johnson 30) but also “inevitably ancillary” (27). MLD cannot conduct research without users’ health data, but users do not appear to be leaders in the research development, data collection, nor publication processes . Ultimately, users’ health data appears to be shared with for-profit companies, which aim to fund profitable vaccines, medications, and diagnostic tools, and there is no guarantee that MLD users will personally benefit from these research endeavors. In turn, the following sections offer examples of how MLD appropriates visual and textual rhetorics of power, simplicity, and individuality to persuade users to share their health data without realizing that “the system is the source and ultimately the determiner of all” (Johnson 27).
MLD’s use of the term “patient-powered” is its most significant rhetoric of user-centeredness. However, there are two irreconcilable tensions between “patient” and “power”: 1) the idea that patients power the website by sharing their data, but that patients have little power in what happens to their data once they share it, and 2) the idea that sharing health data is powerful enough to harm patients, but MLD pays little attention to this possibility.
Traditional clinical trials are “patient-powered” in the sense that researchers gather and process patients’ data, from which they gather results and make recommendations for future research, treatments, and protocols. Alternatively, MLD creators conceive of “patient-power” as both a research method and a practice. On a page titled “Patient Powered,” they explain, “MyLymeData expects to gather more data about Lyme disease than any research study has done before and build a patient-centered research community. That’s what patient-powered research is about!” But looking at these two sentences alone creates some holes in their “patient-powered” argument. Here, the creators mask the definition “patient-power” as a kind of labor and instead focus on a rhetoric of “patient-centered research community,” the benefits of which they, arguably, suggest should outweigh the labor of “patient power.” Later, they note that “New technology allows patients to take the lead” and “MyLymeData lets patients lead the way to help find a cure.” Again, this language is presumptive. Although technology may “allow” patients, a population not usually in a position of biomedical authority, to “take the lead,” it does not value data sharing as a kind of labor. This phrasing also looks at technology as unreflexively beneficial: there is no mention of how data sharing technologies might actually harm patients—by, say, allowing the culling, sharing, and interpreting of data by the untrained general public. MLD’s discussion of “patient power” is entirely different from the notions of power in Women and Their Bodies. Instead of empowering users to become part of the health information sharing process to help themselves and help reform the healthcare system, this is a classic example of neoliberalism at work, in which patients are conscripted into sharing their data and are not compensated for their efforts.
Moreover, even if MLD’s “patient-powered” data can “improve lives,” it is not clear how this happens nor whose lives are improved. Unlike Women and Their Bodies, it is unclear how users are involved in this process. The MLD creators’ names and contact information is not easily available on the MLD website. Users are left to infer that, since it is a “project” of LymeDisease.org, the creators and board of directors are the same, which may not be true. The MLD website “Contact” page (which is accessible only via a small link at the bottom of the home page that says CONTACT) has two buttons: one for “MyLymeData Support” and one for “Researchers.” If users click on the “MyLymeData Support” option, they must select one of five ambiguous subcategories, none of which directly address potential issues with data breaches or other negative consequences of data sharing. Although Women and Their Bodies does not have a contact page, exactly, since it was written by a collective, the authors include frequent in-text citations and a bibliography, which seem to anticipate users’ most pressing questions and offer referrals for additional information.
Even though an FAQ page appears to be user-centered because it seems to anticipate users’ questions and concerns, the MLD FAQ page clearly prioritizes the organization over the user. There are no links at the top of the page to help users more easily find questions about data use, privacy, benefits, etc., and the questions are ordered in a way that appeals to the needs of the MLD administrators, not users. Questions that users might actually have, including “How will my data be used?” and “What about privacy?” are buried in the middle of the FAQ list, which doesn’t have numbers or bullet points, so users have to make more of an effort to locate this information. The second-to-last two questions—“Is there IRB approval for the study?” and “Who can I contact if I have questions about the study?”—may be the most important of all, but again, they are buried in the FAQ list and are not organized in a user-centered way. Relatedly, some of the FAQ questions are also framed in a way that appears to prioritize the needs of MLD over the needs of users, but draws on user-centered rhetoric. For example, Question 5 reads, “What is expected of me?” and Question 7 reads, “How can I participate?” These questions prioritize the user by using first-person language, but the content of the questions is not particularly helpful, since most of that information is available on every single other page of the website.
Overall, MLD claims that users’ data “will not be sold or leased to others,” but it will be “used for Lyme disease research that is patient-centered,” which they claim “is intended to improve quality of life for patients with Lyme disease or to increase our understanding of the disease.” This is rather nonspecific. The MLD “study team” is responsible for data analysis, both “on its own and in partnership with researchers and clinicians who are interested in patient-centered research” (“FAQ”). MLD notes that “independent researchers” with a focus on patient-centered research may also have the opportunity to study the de-identified data. This strategically worded section is ambiguous enough to allow anyone to gain access to the MLD data, including paying corporations. Patient users, however, are not considered to be potential research partners, which is yet another example of how MLD forwards a rhetoric of user-centeredness and is not, in fact, a user-centered platform.
Still, unlike the authors of Women and Their Bodies, who crafted the manual based on iterative feedback from users, MLD primarily relies on scientific, medical, and legal experts to interpret their data, and it is not clear how patients are part of the data analysis or publication process. On the “About” page, it says that “LymeDisease.org will analyze data and provide information to the community through publication of white papers and peer reviewed articles. We will also partner with researchers and clinicians who are interested in research that puts patient interests at the center and seek to cure or improve quality of life.” Although white papers could be considered public genres that are accessible to broad audiences, MLD users are not invited to contribute directly to the writing or revision processes. Although MLD’s partnerships with researchers and clinicians might, ultimately, help patients, there is no evidence that MLD users are partners in the research process.
In addition to the focus on “patient power,” the MLD creators deploy ostensibly user-centered rhetoric that acknowledges users as both individuals and members of the Lyme disease community. This is a compelling binary through which the creators can mobilize users as individuals with the capacity to make substantive change and mobilize these same people as part of a community that can generate even more significant change. MLD’s focus on individuals and individuality is primarily constructed through two key phrases, which appear on multiple pages of the website: “Count me in!” and “Can one make a difference?” (see Fig 1). These phrases appear to be user-centered, but ultimately work to persuade patients to contribute their data to MLD, which may not necessary help patients directly. This is vastly different from the authors’ inclusion of personal stories and perspectives in Women and Their Bodies.
The phrase “count me in!” has multiple meanings, particularly for Lyme disease patients (see Fig. 2).
The Centers for Disease Control and Prevention estimates that 300,000 Americans are diagnosed with Lyme disease each year, but this number is generated based on very strict definition of Lyme disease. As I noted earlier, many patients do not “count” as having Lyme disease because they do not meet certain criteria, and as such, they have been disbelieved, dismissed, and misdiagnosed. In turn, the language of “counting” honors individuals’ identities, stories, and experiences, especially Lyme patients who do not “count” in other settings. This user-centered rhetoric invites users to contribute their data and authorizes them to share diverse experiences.
The second phrase—“one can make a difference”—suggests that that “one” can be you personally. This phrase is primarily presented in the 1:28 minute video, “Can 1 Have Power?” which is featured at the top of the MLD “Home” page as well as on the “Videos” page (see Fig. 3). This video, which begins by asking “Can one person have power?” tells viewers that “If you have Lyme disease, you’re not alone” (“MyLymeData Videos,” emphasis original). By using second person, viewers are immediately drawn in and made to think about themselves in relation to others. Then, the video begins discussing “big data” and frames it through the user individually: “Today, there’s a new kind of research that allows you to fight Lyme Disease with your own health information. It’s called big data, and big data research is a big deal.” This definition is too simplistic to be meaningful. More significantly, viewers are prompted to think that “you” can help cure Lyme disease by using your own data (italics added). Users, then, do not need to be able to understand anything about science or “big data” to feel agented (or perhaps more significantly, obligated) to contribute to Lyme disease research.
The video concludes, “It’s within your power to change the future, starting right now. Add your Lyme data to my Lyme data, and help find a cure for Lyme Disease.” This statement integrates both the individual and community aspects of MLD to compel people to contribute their data. In fact, it almost seems unethical for users not to contribute their data and increase the seemingly exponential power of MLD’s “big data” project. Women and Their Bodies, on the other hand, encourages users to add and revise the course as well as to share it with other women to improve the healthcare system for all.
The phrases “Count me in!” and “Can one make a difference?” emphasize that individual voices are not merely important, but in fact integral, to finding a cure for Lyme disease. Moreover, they establish an exclusive sharing economy, which economist Chris J. Martin defines as the exchange of knowledge, tools, skills, or other information that is primarily “driven by digital technologies” (152). As it plays out on MLD, users must become members and share their data in order to gain access to the data. Although sharing economies may lead to “a more sustainable form of consumption,” they may also be rhetorically “reframed by regime actors as purely an economic opportunity” (149). In other words, sharing economies may reinforce system-centered practices and technologies. In this case, in addition to helping suffering patients alleviate their Lyme disease symptoms, MLD and its industry partners may profit financially from products they develop with users’ data. By focusing on the language of individuality, MLD aims to bring people together by agenting them as individuals who can make an impact on behalf of a larger, amorphous, nondescript, ambiguous community. Alternatively, the authors of Women and Their Bodies advocate for sharing personal stories and advancing users’ medical knowledge, but users are not forced to do so in order to use the course.
Ultimately, MLD is positioned as an authority that speaks on behalf of Lyme disease patients without fully including those patients in its work. MLD emboldens users via imperative phrases to “Help us advance science,” “Join the study,” and “Become part of something big by providing your vital piece” (“Home,” emphasis added). There are also explanatory notes, such as “When people are sick, they may feel they can’t even help themselves, let alone help anyone else. This is something any patient can do” (“Home”), but these imperative phrases are more directive and better at compelling users to contribute. This strategy is present throughout the website. On another page, users are prompted to “Take your first survey” and are told that “You can take a break and come back to it if you need to.” This kind of flexibility removes barriers that would typically prevent individuals needing accommodations from participating (“What”). Even though the tone is invitational, much like the tone of Women and Their Bodies, users are obliged to take the surveys without sufficient background information about MLD’s ultimate goals.
), but these imperative phrases are more directive and better at compelling users to contribute. This strategy is present throughout the website. On another page, users are prompted to “Take your first survey” and are told that “You can take a break and come back to it if you need to.” This kind of flexibility removes barriers that would typically prevent individuals needing accommodations from participating (“What”). Even though the tone is invitational, much like the tone of Women and Their Bodies, users are obliged to take the surveys without sufficient background information about MLD’s ultimate goals.
The MLD creators note, “After the first one, we will send you additional surveys (about quarterly) asking additional questions and tracking your progress. We will let you know what we discover” (“What”). The We-You-We pattern here illuminates a persuasive yet peculiar hierarchy: MLD is the organizing and authoritative power that propels you into action, but they cannot have power without you. Although these users can download and repurpose the disaggregated data, only high-level creators make decisions about developing, analyzing, and circulating it for broader audiences, unlike in Women and Their Bodies, where users are encouraged to adapt the course to meet their and their community’s needs.
In all, people want to be part of a community because they want to feel seen, understood, and recognized. The MLD creators are using this same formula to compel people to contribute their data, but they are shaping their community in very strategic ways. This approach, which combines the best of exclusivity, community, helplessness, helpfulness, and guilt, has broad appeal and can therefore attract a broad spectrum of users.
The final (and perhaps most revealing) rhetorical move that the MLD.org creators make is to frame their requests around a rhetoric of simplicity, ease, and speed, which contradicts the rhetoric of complexity that undergirds scientific work. MLD suggests that “big data” is what makes their study so simple and easy. They cite three easily comprehensible benefits of big data research: it “provide[s] lots of information,” “uses very broad entry criteria,” and “examines treatments used in the real world” (“About”; see Fig. 4).
However, in reality, “big data” research methods make it easier for researchers to gather and analyze large quantities of data, but they do not help patients access nor use the data. For instance, as an MLD member and contributor, I am able to access all five of their current surveys. Thus far, I have filled out three of them. If I wanted to go back and view my results from the “Unwell Survey – Phase 2,” which has 149 questions distributed over 11 pages, I would need to manually click through the entire survey. Even though the MLD creators appear to offer PDF versions of completed surveys, the PDFs only include two pages of the survey at a time, making it laborious for users to access their own data. This is another example of how the MLD appears to center users but has designed the platform to serve their own interests.
Relatedly, for the “Twenty-Four Month Follow-Up” survey, which I have not filled out, I am unable to discern how long it is or what information will be required until I complete it (see Fig. 5). Although the directions tell me that I can “log out at any time” and my “answers will be saved,” it is impossible for me to preview the survey and, in turn, evaluate how it might serve me, what kinds of information I would prefer to share or not, etc. Again, this structure works in service of MLD. Users may choose to stop at any point or skip some questions, but they must take the chance and begin filling out the survey to figure out what it entails.
Additionally, like Women and Their Bodies, MLD frequently uses terms like “simple” and “simplicity.” For example, the home page reports, “Our patient surveys draw over 9,000 responses! We’ll use the information provided by patients to help figure out how to prevent and treat all stages of Lyme disease. It’s that simple” (“Home,” emphasis added). The “About the Study” page urges users to “Sign up to become part of the study. It’s easy” (“About,” emphasis added). It is strange to think about the MLD surveys as “simple,” since there are multiple surveys that ask hundreds of questions about users’ experiences with Lyme disease. Answering all of the questions might require looking back at one’s records (or ideally this would happen so that users could include accurate information), speaking with one’s family or doctor to clarify names of medications or the types of tests, etc. Furthermore, “simply” taking the survey requires a relatively high level of medical literacy that may go beyond most users’ traditional knowledge scopes. In turn, the language of simplicity belies the reality of using the MLD website.
The language of simplicity is also, surprisingly, emphasized on the FAQ page. The MLD FAQ page relies on the language of simplicity and ease to convince potential users to sign up and share their data rather than answer important questions about privacy and data use. Users are immediately confronted with this concept, starting with the first question: “How do I sign up for the study?” (see Fig. 6). Rhetorically, the content managers have chosen to put this information first because they want users to pay the most attention to it. The answer to this question, accordingly, is “Signing up is easy. Just fill in the required information. Then, simply take your first survey” (“FAQ,” emphasis added). Although this question might appear to cater to users, it is unlikely that users are confused about the sign-up process because there are bright orange “Count Me In!” and other sign-up links on every page, sometimes multiple times. In turn, it is clear that the MLD FAQ page is just another place where the creators aim to recruit participants regardless of potential harm to users. Two FAQ questions in particular focus on the language of simplicity. In the answer to Question 7, the content creators report that “If you are of legal age (18 years old in most states), simply sign up.” Similarly, in question 9, which is about privacy, the answer notes that if users get uncomfortable, “[w]ith few exceptions, [they] can simply skip questions [they] prefer not to answer” and that if users decide to withdraw from the registry, they can “[s]imply contact the registry and all of [their] data will be removed from the database” (“FAQ”). The repetition of the word “simply” here is notable because it is unclear, exactly, how easy it is for participants to skip questions and revoke their data.
And perhaps most significantly, navigating the user profile portion of the website is anything but simple. By sharing their Lyme disease data, users are given access to MLD’s pool of de-identified, aggregated data. However, the platform’s interface does not help users interpret the data. To take one example, I have included a screenshot of the “Disability” question from the baseline survey (see Fig. 7). The data is organized thematically on the left side of the page, purportedly in the same order as the initial survey questions. Users are able to click on each topic (derived from the survey questions), and when they do, two graphs—one bar and one circle—appear. Strangely, an orange and white subtitle that reads “Your response” appears above the graphs, but it is unclear how or where your response is included.
In this particular case, it appears that only five people responded to this question, and as such, the graphs are somewhat meaningless because it is easy to parse such a small data set. This example illuminates multiple problems with MLD’s framing and distribution of “patient-powered” data. First, it makes clear that even though thousands of people might have filled out the MLD surveys, many skipped particular questions. The “big data” research method here, then, might not be as all-encompassing nor as useful as the MLD creators suggest. Second, in this format, it is unclear how this data will help patients personally. In this example, the five people who answered the question reported that they were “disabled” from a range of one year to more than ten years. This question and the accompanying answer lack necessary context. What, exactly, does it mean to be “disabled” in this case? Since there is no clear trend among the answers, how should a user make sense of this data?
Ultimately, this example makes it clear that giving users access to a “big data” set not only does not necessarily benefit users, but it might actually harm them. Although MLD users are likely highly health literate patients who have long been researching Lyme disease, they may not know how to interpret data, and they may be alarmed by the responses to this question and others. Although a sample size of five people is probably too limited to be useful, there is no background section that provides information of this nature. Moreover, there is no mechanism for helping users deal with the distress caused by looking at this data.
Unfortunately, nearly 50 years later, many of the problems articulated by the Women and Their Bodies authors remain unsolved. Many patients still do not receive necessary preventative care (183). Black women are three- to four-times more likely than white women to die in childbirth—unchanged from 1970 (183). As the authors lamented, children still lack sufficient vaccines, and major cities are experiencing outbreaks of previously eradicated diseases (179). We have been unable to ameliorate the root causes of so many health problems: “bad housing, poor nutrition, poor sanitation, pollution, and dangerous working conditions” (179). It is still true that many of these issues are “suffered mainly by poor people who have no control over them” (179). And, perhaps worst of all, the U.S. still spends more money per person on healthcare than any other country (182).
Accordingly, feminist rhetoricians and healthcare activists are tasked with identifying “new forms of feminist knowledge that meet the challenges of corporatized, neoliberal health care” (Dubriwny 154). One of these challenges is figuring out who, specifically, advocacy groups aim to support. MLD claims to be “a project of LymeDisease.org,” a 501(c)(3) nonprofit organization. However, a brief internet search shows that MLD is not a nonprofit. MLD is listed as one of many possible “Patient Insight Networks” on Invitae’s website. Invitae is a genetics company, and its primary function is to make genetic data collection as fast and patient-oriented as possible. At the same time, Invitae is ultimately owned by Thomas, McNearny, & Partners, a hedge fund (or, in their terms, a “health care venture firm that invests in life science and medical technology companies at all stages of development”). In turn, MLD’s ambiguous language about privacy and data sharing means that it can connect with whomever it desires in order to advance research. To be sure, MLD has crafted flexible policies to allow for these kinds of collaborations. And yet the idea of producing data and capital for a for-profit organization does not exactly match the vision that MLD portrays: that of a patient-powered, user-centered platform meant to advance research. In this case, it is difficult for users to disentangle where patient power ends and corporate power begins.
It is easy to imagine how MLD would be different if it were created by and for patients with Lyme disease. In Kristin Arola’s chapter, “Indigenous Interfaces,” she considers how Facebook would be different if it had been created “by and for” American Indian users (209). Drawing on interviews with twelve American Indian people, mostly from the Keweenaw Bay Indian Community Lake Superior Band of Chippewa Indians, Arola argues that a Facebook for American Indians would look different, perhaps using Native colors and “iconic image[s] like a feather or medicine wheel” (212). She also suggests that it would be used differently, in a way that “allows and encourages certain actions important to a group of people” (215).
Building on Arola’s findings, I believe that a truly user-centered version of MLD would include accessible, easily navigable questions about diagnosis, treatment, and prognosis.
Instead of emphasizing big data, MLD would be community-oriented and provide a tool to help users mine through other users’ anecdotes. There would be sections about conventional and radical treatments, integrating scientific and medical research alongside patients’ stories. MLD would provide talking points for interfacing with different types of healthcare providers (such as primary care providers versus specialists) and have a chart explaining what different types of providers can offer patients. It would include publicly accessible data, but patients—alongside clinicians and researchers—would provide guidance about how to interpret and use the data. And most importantly, patients would be intimately involved in managing the site, making changes based on evolutions in patients’ needs, and collaboratively analyzing and publishing results of data collection projects. The research questions would be expanded to account for the diverse skill sets that Lyme disease patients must develop. For example, how did users figure out which doctors were “Lyme literate”? How did users learn which scholarly journals publish about Lyme disease and which are open access? How do users make sense of discussion board posts and make the most of their time on social media sites?
In a world without dependable texts like OBOS to ground patients’ research, feminist rhetoricians must continue investigating Dubriwny’s core questions, especially: How can we “recognize” the important work of apps, website, and health data sharing platforms in a way that presents a “critical stance” yet does not “unquestioningly embrace” them entirely? (161). There is much work to be done, and by considering issues of power, individuality, and simplicity in language and information design, feminist rhetoricians are equipped to lead the way.
- OBOS, and especially Women and Their Bodies, primarily reflects the perspectives of the white, upper-middle class women who composed it.
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