J Med Humanit (2014) 35:229–235 DOI 10.1007/s10912-014-9279-3
Afterword: Elaborating Health and Medicine’s Publics J. Blake Scott
Published online: 22 April 2014 # Springer Science+Business Media New York 2014
Abstract This essay argues that medical and health humanists interested in the rhetorical work of publics can extend their research by attending to embodiment and infrastructure. In addition to discussing how such strategies are illustrated in the essays appearing in this special issue, I relate them to the rhetorical study of personal health records (PHRs) as described in consumer-directed arguments. I conclude by posing two questions to health and medical humanists: “How do discursive constructions of publics and more specific instantiations of embodied experiences mutually shape each other?” and “What do the infrastructures of health and medical users look like and involve in their enactment?” Keywords Publics . Medicine and health . Embodiment . Infrastructure . Personal health records (PHRs) In her introduction to this special issue, Lisa Keränen notes how a rhetorical focus on medicine’s publics necessitates redirecting analysis from “official texts of biomedicine to the practices that various groups use in contributing to and altering biomedical and health practices” (104). Keränen explains that this redirection is indebted, in part, to rhetorical (or rhetorically inflected) work (by, for instance, Warner 2002; Hauser 1999; Brouwer and Asen 2010) that has helped us consider the pluralities of publics that form in response to “issues of interdependent concern” (104). Indeed, the essays in this special issue extend this work by further teasing out concepts of health and medical publics and illustrating various ways to analyze how they are formed, how they function, and the effects they produce. But rhetorical scholarship more generally and rhetorical studies of health and medicine more specifically have largely skirted the work of developing and assessing operational definitions of the publics they discuss. To some extent, Dilip Parameshwar Gaonkar’s (2009) observation that “the idea of the ‘public’ has had a shadowy existence in rhetorical criticism, always present in its taken-for-granted quality but underelaborated” still holds true (412). Redirecting studies of medical texts to the practices of medical publics begs a number of conceptual and methodological questions about how to identify, study, and engage publics. For example, what does the idea of publics offer that other concepts (e.g., audiences, assemblies, communities) do not? How and to what extent can we distinguish between publics and J. B. Scott (*) Department of Writing & Rhetoric, University of Central Florida, Orlando, FL, USA e-mail: [email protected]
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counterpublics? And how can we track, facilitate, and assess the ways publics form, act and transform? The stakes of health and medical practices make pausing to reflect on such questions a useful and necessary step for scholars of the health and medical humanities. In this afterword I want to advocate for two strategies—both conceptual and methodological—for advancing the work taken up in this issue. In addition to discussing how these strategies are illustrated in the essays of this special issue, I will relate them to the rhetorical study of personal health records (PHRs), particularly as described in consumer-directed arguments. The American Health Information Management Association (AHIMA) (2013) defines PHRs as tools (typically electronic) that health consumers “can use to collect, track and share past and current [health] information” (“What”). Whereas electronic health records (EHRs) are generated by patients’ encounters with health delivery systems and maintained by providers, PHRs are voluntarily maintained by patients or health consumers themselves, although the information in EHRs and PHRs can inform the other. The rhetoric advocating PHRs by the AHIMA’s “My PHR” website, Centers for Medicare & Medicaid site, and the sites of various PHR vendors describes the tools as convenient, expedient, and easy to set up, use, and share with providers, anytime and anywhere. Yet this rhetoric, I will explain, elides the complexities facing embodied users of PHRs. The two strategies to which I now turn offer ways to account for such complexities shaping the practices of health and medical publics.
Relating bodies and embodied enactments One tension in rhetorical work on publics occurs between their discursive and material dimensions. Warner (2002) has compellingly argued for conceiving publics as intertextual social spaces organized and recognizable through interlinked and ongoing discursive action (413). Although they can enlist people in collective action, publics, in this view, are dynamic entities that “come into being” through “texts and their circulation” and act “in the temporality of . . . [this] circulation” (413, 421). In one sense, then, publics can be thought of as the shifting effects of rhetoric and its circulation. At the same time, publics can be formed by and comprised of embodied actors that assemble and act in and across materially conditioned contexts. Acknowledging the embodied actions and material contexts of publics is not to deny their dynamism and contingency. However, it might, as Grabill (2010) argues, prompt rhetoricians to ask more “empirical questions of how people create public spaces” and “exigencies for gathering” (194, 199). Competing concepts for understanding publics have also informed rhetorical and other humanistic studies of health and medicine, prompting my call to consider further ways of merging the discursive and material in medical humanities scholarship. The first strategy I advocate comes from Katherine Hayles’ (1999) theorizing of the relationship between bodies and embodiment. Borrowing from Elizabeth Grosz (1994), Hayles describes bodies as “social and discursive concept[s]” formed in relation to normalizing values (196). Although they are often purported to capture embodied subjects and their experiences, bodies-as-constructs are normalized, abstractions of these experiences (197). This notion of bodies resonates with Warner’s sense of discursively constructed publics. In her contribution to this special issue, Jennifer Malkowski usefully explicates how social scientists and other scholars articulated the contested bodies of “bug chasers,” a construct rhetorically normalized through perceptions of risk, irrationality, and irresponsibility, and contained through distancing from the construct of the general public. In addition to critiquing this discursive-ideological construction, Malkowski argues for a notion of bug chasers as a medical counterpublic whose “contextual exigencies” might more broadly inform public health responses to HIV/AIDS. In
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her critique of normalizing bodies, Huiling Ding explains how notions of risky Asian immigrants and travelers were used in arguments for voluntary and “coerced” quarantines in North American communities responding to the H1N1 flu. Hayles (1999) distinguishes bodies from embodiment and embodied experience, which she describes as “contextual, enmeshed within the specifics of place, time, physiology, and culture, which together compose enactment” (196). Whereas bodies need not be tied to contexts, embodiment and the incorporating practices of embodied subjects cannot be removed from them. Whereas bodies are idealized categories, embodiment is characterized by “individual enactments” that are “improvisational” (197). Whereas bodies function as normalizing cultural constructs, embodiment, as heterogeneous instantiations of experience, resists normalization and, in this way, complicates or “destabilizes” bodies (197). In their study, Heidi Y. Lawrence, Bernice L. Hausman, and Clare J. Dannenberg argue for reframing larger imagined communities of antivaccinationists and vaccine hesistant publics (examples of bodies formed from “statistical commonalities”) with local articulations of vaccine-related rhetorics and decisions, performed within the contexts of families’ “psychosocial spaces” (111). Philippa Spoel, Roma Harris, and Flis Henwood draw on interviews with older adults to similarly problematize hegemonic notions of health citizenship, explaining how such notions are “taken up, negotiated, and potentially resisted or destabilized in diverse and complex ways by particular citizens in particular times and places, and for particular purposes” (132). In this case, too, bodies of health publics are complicated by the actual embodied experiences of health users. Perhaps more important than Hayles’ (1999) bodies-embodiment distinction is her call to articulate the two together, accounting for the ways they are mutually conditioning (198). Hayles imagines this relationship as a feedback loop, discussing how “changes in experiences of embodiment bubble up in language” and how, at the same time, “discursive constructions affect how bodies move through space and time” (206–207). Elaborating how this feedback loop plays out between constructions of health and medical publics and people’s embodied experiences around health is crucial for understanding and productively intervening in health and medical practices. Even as they focus more on one part of the feedback loop, the essays in this issue begin to illustrate what rhetoricians might gain from mining what Rayna Rapp (2000) calls an “‘analytic tension’ between abstract and categorical labels and the descriptive particularity of individual stories” (9). Patty A. Kelly, for example, traces the rhetorical process through which patients’ “reported speech,” was “decontextualize[d], dehistoricize[d], and universalize[d]” into data supporting new DSM-5 diagnostic criteria. Her analysis also points out how these standardized language constructions, in turn, help facilitate the “uptake” of diagnostic practices “across an array of social institutions” (176). Indeed, the primary arguments of several essays in the issue involve further accounting for the relationship between bodies and embodied actions. In their call for “hybrid” policymaking forums, Christa B. Teston, S. Scott Graham, Raquel Baldwinson, Andrea Li, and Jessamyn Swift argue for adapting the FDA’s public hearings to “enact not just heterogeneous stakeholder inclusion, but also . . . the ontologies that stakeholders bring to bear upon the deliberation” (165); such ontologies, which include practitioners’ clinical experience and patients’ “lived experience of illness” can usefully complicate the bodies of patients represented in clinical study statistics (161). Malkowski, Ding, and Lawrence et al. similarly advocate for “foregrounding contextual exigencies,” to use Malkowski’s phrase, as a means to not only complicate depictions of medical publics but also to learn from and better engage these publics (223). To return to my extended example, the rhetoric around personal health records (PHRs) touts their ease of use and benefits to health consumers and also to a number of other more specific and related publics including seniors, caregivers, parents, students, travelers, and physicians. Through its numerous patient and provider empowerment narratives, the “My PHR” consumer
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website is an especially rich space for exploring this rhetoric. For example, a blog entry on the site titled “A woman’s Facebook personal health record saved her life,” describes how emergency room doctors were able to access vital medical information about a woman in a coma through the records she kept on her Facebook account, information that helped them treat her and ultimately aid her recovery. Not unlike the “health citizens” described in the government rhetoric analyzed by Spoel et al., the health consumers invoked in the “My PHR” site are called on to more actively and responsibly manage their health and/or that of their families. This personal health care management, in turn, would necessarily lead to empowerment, particularly when they engage health care providers. “Be a Powerful Patient!” and attain “Personal Health Ownership” trumpet two pages of the consumer website. Interestingly, this appeal to control and empowerment seems to be contradicted, to some extent, by the rhetoric’s extreme emphasis on ease of use, particularly when vendor products like “My Instant Medical Information” and “myMediConnect” are marketed as “doing the work for you.” In her discussion of the body-embodiment feedback loop, Hayles argues that “discursive constructions,” in this case constructions of PHR users and potential users, “help to structure the interfaces between bodies and technologies” (207). Rhetorics of ease and empowerment have clearly informed the design of PHR products, including Web-based interfaces that can be accessed from a number of locations and function to assist with colleting and organizing records, managing appointments, and even transmitting health information to providers. These products, in turn, make certain embodied practices by users possible and others less possible. Some users can use PHRs to better prepare for visits with providers or to provide new providers with their health histories. Other users with less health literacy, less access to the Internet, and/or less access to reliable health care may find it difficult or impossible to use such health management systems. Because PHRs are not official legal records protected by HIPAA, vendor-maintained PHRs could also enable the exploitation (i.e., aggregation and selling) of consumer information. Continuing the feedback loop, through which embodied practices can create experiential frameworks that inform technology design and discursive constructs, consumer reactions to PHRs—including the widespread reluctance to use them—have informed designs of EHR patient portals (to emphasize messaging and emailing with providers) and have generated renewed constructions of health consumers as apathetic or overly concerned about privacy. Untangling this feedback loop, of which rhetoric is an integral part, also suggests the utility of another strategy I will describe next—tracking the infrastructures of medicine’s publics.
Tracking infrastructures In 2011, Google announced that it would shut down Google Health, its PHR created in 2008, explaining that the product “is not having the broad impact we had hoped it would” (Brown, cited in Lohr 2011). This story of a failed PHR is not unique, prompting one observer to declare “rest in peace” (Grohol 2011) and prompting the question, “How do we reconcile the apparent reluctance of publics to adopt PHRs with the ease and empowerment promised through them?” One answer is to look more closely at the infrastructures of the publics invited to use PHRs. In the traditional sense of the term, an infrastructure refers to a material, technological, and/ or organizational foundation or framework that supports activity. Considering the infrastructures of PHRs in this regard might entail examining the underlying technologies, designs, and capabilities that enable them to support some activities and not others. It might involve, for
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instance, examining the potential of PHRs to synch with EHRs and adhere to technical (e.g., interoperability, patient data) standards. Even considering infrastructures in this limited sense could open up sites for rhetorical study; scholars examining arguments about the ease and efficiency of PHRs might relate such arguments to various infrastructural incongruities among PHRs, EHRs, and other medical systems and practices (e.g., provider workflow). In the rest of this afterword I want to advocate for a broader notion of infrastructure and its methodological utility for rhetoricians of health and medicine. In their work on information infrastructures, Susan Leigh Star and Karen Ruhleder (1996) characterize infrastructures according to several criteria that others have used to consider rhetorical practices (see, for example, DeVoss, Cushman, and Grabill 2005; Grabill 2007); these criteria—which include “embeddedness . . . in other structures, social arrangements, and technologies” and “links with conventions of practice”—emphasize the connection of infrastructure to social practice. In this formulation, Star and Ruhleder shift the emphasis from the components of infrastructures to how, where, and when infrastructures are enacted through activity (112). Developed by anthropologists, the notion of “sociocultural infrastructures” can also usefully expand our sense of infrastructure enactment, helping us focus on a wider range of nonmaterial resources on which users and publics draw and expanding our purview to users’ larger lifeworlds. In her study of how communities of women interpret and respond to prenatal diagnosis, anthropologist Rayna Rapp (2000) provides a compelling analysis of such infrastructures, which for the women she interviewed included “a rich and diverse range of culturally organized gender relations, kinship connections,” and socioeconomic aspirations (24). In Rapp’s study, infrastructures involve a broader range of factors that shape the uptake of health and medicine, and these factors involve both bodies (e.g., cultural constructions of pregnant women) and modes of embodiment (e.g., women’s ways of relating to their families and communities). Several of the essays in this issue, too, explore this broader sense of how publics engage health and medicine across contexts and in relation to a variety of sociocultural frameworks. Lawrence et al. argue “for the need to know from the inside out why people believe what they do and how those beliefs are linked to other values and practices in their daily lives” (126). Some of the people they interviewed drew on cultural and familial discourses and values—part of their sociocultural infrastructures—in enacting “practical, non-scientific behaviors designed to protect the self from needless encounters with disease” (124). Ding’s study discusses how health publics, including mainland Chinese netizens, drew on both digital and communal infrastructures including social networking tools, communal values and modes of decisionmaking to develop their own tactics for containing the “imported” health risk of H1N1 (204). Spoel et al. provide a view into how people’s vernacular opinions (Hauser 1999) about healthy eating and active living are “rhetorically produced through [their] . . . discursive negotiation of prevalent discourses” and everyday health contexts (133). Of particular interest to our discussion of infrastructures is the observation by their study participants that the government’s call for healthy living was not sufficiently supported by community infrastructure and resources. Drawing from but also expanding our rich repertoire of methods for analyzing how discourse works in context, rhetoricians might more fully examine the infrastructures that emerge across the lifeworlds of health and medical publics. Hannah Bellwoar (2012) provides a promising example in tracking how a pregnant woman makes meaning from (and in some ways repurposes) patient information in relation to a variety of other texts and resources in her lifeworld—including her embodied experience and knowledge. As Bellwoar points out, much rhetorical scholarship has focused on how health and medical texts get produced, an observation that could be extended to the medical humanities more generally. Other rhetorical and other humanistic studies have moved, to some extent, beyond such a text-based focus,
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examining patients’ and others stakeholders’ encounters with health and medicine. The health and medical humanities could do more, however, to understand what embodied users bring to these encounters, what they take with them, and how these meanings get transformed in relation to a range of other ideas, tools, sponsors, relationships, and resources. This is how a methodological emphasis on infrastructure can be useful. In his work on infrastructures that support a community’s civic (including rhetorical) action, Jeffrey Grabill (2007) illustrates how we might merge technological-material and sociocultural understandings of infrastructures. The civic infrastructures he examines and proposes involve a combination of technologies, interfaces, community and organizational knowledges, institutional standards, values, interpersonal relationships, literacies, and other elements that shape the rhetorical practice of publics (see, for example, 29, 40, 69). Grabill usefully emphasizes more specific functions of infrastructures that could be useful to rhetorical studies of health and medical publics: their potential to build capacity for and directly enable civic rhetorical action. Indeed, Grabill employs the rhetorical term metis in his formulation of “metis-capable infrastructures” that are designed around users’ civic needs and that enable their tactical, resourceful knowledge management (91–94). Examining the infrastructures of PHRs through a more expansive lens would require us to shift our primary analytic gaze from the rhetorics about them and the technologies themselves to the context-specific practices of publics, as noted by Keränen. But such an examination would add a focus on the socio-material resources—including rhetorics—that emerge from and shape these practices. Given that PHRs have been marketed as easily embeddable into users’ existing practices (ranging from daily schedule management to exercise tracking to vacationing to pet care), such an examination seems particularly relevant and might reveal reasons why the rhetoric of ease and empowerment (which imagines a particular public of users) has not been accompanied by widespread use. What are people’s exigencies for using PHRs, health and medical humanists might ask, and to what extent do these conform to the capabilities of PHRs, or patient portals of EHRs, for that matter? For starters, tracking the infrastructural use of PHRs would likely reveal issues or barriers related to patients’ experiences with new media and privacy, to patients’ varying health literacies and values, and to patients’ access to provider cooperation and information. A recent study of diabetes patients using Internet-based health records found health literacy and digital literacy to be major factors in consumers’ ability to meaningfully access and use digital PHRs (Sarkar et al. 2010). Many providers managing EHRs do not want patients to have access to everything in their official health records, and patients must sometimes complete several steps to authorize and facilitate the release of their information for inclusion in PHRs. Unlike the rhetoric surrounding EHRs— which have been described as clunky, disjointed, and a burden to adopt, learn, and use—the rhetoric surrounding PHRs has mostly glossed over their limitations. Examining the broader infrastructures around the use of PHRs could open them up for critique and improvement. Examining the embodied experiences of publics—by observing them in the contexts across which they move and by teasing out how they are shaped by and, in turn, shape discursive constructs of publics—can help us arrive a better infrastructural understanding of health and medicine’s publics. Conversely, a focus on enacted infrastructures—including their material, sociocultural, and rhetorical dimensions—can help us tease out more specific dynamics of the body-embodiment feedback loop. Hayles (1999) argues that technologies play crucial roles in this feedback loop, as they can shape changes in incorporating practices (practitioners’ timeon-task, patterns in patient-doctor communication) and, by extension, experiential frameworks that, in turn, influence discursive constructions (205). This is one reason why relatively new health technologies like digital PHRs and EHRs make promising starting points for investigating publics and their infrastructures.
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This special issue usefully illustrates how rhetoricians can contribute to understandings and practices of health and medicine’s publics, and yet it also suggests some directions for expanding rhetorical conceptions and methodologies, particularly around the roles of rhetoric in health and medical practices. Interviewing members of publics is a promising start, but we should also continue to experiment with rhetorically-oriented qualitative and even quasiethnographic methods, as Keränen states, “to capture the complex texture of public action, understanding, and meaning generation” (104). Perhaps in collaboration with other types of scholars, health and medical humanities scholars should continue to experiment with different approaches to answering such questions as, “How do discursive constructions of publics and more specific instantiations of embodied experiences mutually shape each other?” and “What do the infrastructures of health and medical users look like and involve in their enactment?”
References AHIMA. 2011. “A Woman’s Facebook PHR Saved Her Life.” myPHR website. February 7, 2011. Accessed March 15, 2012. http://www.myPHR.com/Stories/NewsStory.aspx?Id=382. AHIMA. 2013. “What is a Personal Health Record (PHR)?” myPHR website. Accessed February 15, 2013. http://www.myPHR.com/startaPHR/what_is_a_PHR.aspx. Bellwoar, Hannah. 2012. “Everyday Matters: Reception and Use as Productive Design of Health-Related Texts.” Technical Communication Quarterly 21 (4): 325–345. Brouwer, Daniel C., and Robert Asen, eds. 2010. Counterpublics and the State. Albany: State University of New York Press. DeVoss, Danielle Nicole, Ellen Cushman, and Jeffrey T. Grabill, eds. 2005. “Infrastructure and Composing: The When of New Media Writing.” College Composition and Communication 57 (1): 14–44. Gaonkar, Dilip Parameshwar. 2002. “Publics and Counterpublics.” Quarterly Journal of Speech 88 (4): 410–412. Grabill, Jeffrey T. 2007. Writing Community Change: Designing Technologies for Citizen Action. New York: Hampton Press. ———. 2011. “On Being Useful: Rhetoric and the Work of Engagement.” In The Public Work of Rhetoric: Citizen- Scholars and Civic Engagement, edited by John M. Ackerman and David J. Coogan, 193–208. Columbia: University of South Carolina Press. Grohol, J. M. 2011. “Rest in Peace: Personal Health Records (PHRs).” E-patients.net, April 12, 2011. Accessed 15 February 2013. http://e-patients.net/archives/2011/04/rest-in-peace-personal-health-records-PHRs.html. Hauser, Gerard A. 1999. Vernacular Voices: The Rhetoric of Publics and Public Spheres. Columbia: University of South Carolina Press. Hayles, N. Katherine. 1999. How We Became Posthuman: Virtual Bodies in Cybernetics, Literature, and Informatics. Chicago: University of Chicago Press. Lohr, Steve 2011. “Google to End Health Records Service After It Fails to Attract Users.” New York Times, June 24. Accessed February 15, 2013. http://www.nytimes.com/2011/06/25/technology/25health.html?_r=0. Rapp, Rayna. 2000. Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. New York: Routledge. Sarkar, U., A. J. Karter, J. Y. Liu, N. E. Adler, R. Nguyen, A. Lopez, and D. Schillinger. 2010. “The Literacy Divide: Health Literacy and the Use of an Internet-Based Patient Portal in an Integrated Health System— Results from the Diabetes Study of Northern California.” Journal of Health Communication: International Perspectives 15 (2): 183–196. Star, Susan Leigh, and Karen Ruhleder. 1996. “Steps Toward an Ecology of Infrastructure: Design and Access for Large Information Spaces.” Information Systems Research 7 (1): 111–134. Warner, Michael. 2002. “Publics and Counterpublics.” Quarterly Journal of Speech 88 (4): 413–425.
Afterword: Elaborating Health and Medicine’s Publics J. Blake Scott
Published online: 22 April 2014 # Springer Science+Business Media New York 2014
Abstract This essay argues that medical and health humanists interested in the rhetorical work of publics can extend their research by attending to embodiment and infrastructure. In addition to discussing how such strategies are illustrated in the essays appearing in this special issue, I relate them to the rhetorical study of personal health records (PHRs) as described in consumer-directed arguments. I conclude by posing two questions to health and medical humanists: “How do discursive constructions of publics and more specific instantiations of embodied experiences mutually shape each other?” and “What do the infrastructures of health and medical users look like and involve in their enactment?” Keywords Publics . Medicine and health . Embodiment . Infrastructure . Personal health records (PHRs) In her introduction to this special issue, Lisa Keränen notes how a rhetorical focus on medicine’s publics necessitates redirecting analysis from “official texts of biomedicine to the practices that various groups use in contributing to and altering biomedical and health practices” (104). Keränen explains that this redirection is indebted, in part, to rhetorical (or rhetorically inflected) work (by, for instance, Warner 2002; Hauser 1999; Brouwer and Asen 2010) that has helped us consider the pluralities of publics that form in response to “issues of interdependent concern” (104). Indeed, the essays in this special issue extend this work by further teasing out concepts of health and medical publics and illustrating various ways to analyze how they are formed, how they function, and the effects they produce. But rhetorical scholarship more generally and rhetorical studies of health and medicine more specifically have largely skirted the work of developing and assessing operational definitions of the publics they discuss. To some extent, Dilip Parameshwar Gaonkar’s (2009) observation that “the idea of the ‘public’ has had a shadowy existence in rhetorical criticism, always present in its taken-for-granted quality but underelaborated” still holds true (412). Redirecting studies of medical texts to the practices of medical publics begs a number of conceptual and methodological questions about how to identify, study, and engage publics. For example, what does the idea of publics offer that other concepts (e.g., audiences, assemblies, communities) do not? How and to what extent can we distinguish between publics and J. B. Scott (*) Department of Writing & Rhetoric, University of Central Florida, Orlando, FL, USA e-mail: [email protected]
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counterpublics? And how can we track, facilitate, and assess the ways publics form, act and transform? The stakes of health and medical practices make pausing to reflect on such questions a useful and necessary step for scholars of the health and medical humanities. In this afterword I want to advocate for two strategies—both conceptual and methodological—for advancing the work taken up in this issue. In addition to discussing how these strategies are illustrated in the essays of this special issue, I will relate them to the rhetorical study of personal health records (PHRs), particularly as described in consumer-directed arguments. The American Health Information Management Association (AHIMA) (2013) defines PHRs as tools (typically electronic) that health consumers “can use to collect, track and share past and current [health] information” (“What”). Whereas electronic health records (EHRs) are generated by patients’ encounters with health delivery systems and maintained by providers, PHRs are voluntarily maintained by patients or health consumers themselves, although the information in EHRs and PHRs can inform the other. The rhetoric advocating PHRs by the AHIMA’s “My PHR” website, Centers for Medicare & Medicaid site, and the sites of various PHR vendors describes the tools as convenient, expedient, and easy to set up, use, and share with providers, anytime and anywhere. Yet this rhetoric, I will explain, elides the complexities facing embodied users of PHRs. The two strategies to which I now turn offer ways to account for such complexities shaping the practices of health and medical publics.
Relating bodies and embodied enactments One tension in rhetorical work on publics occurs between their discursive and material dimensions. Warner (2002) has compellingly argued for conceiving publics as intertextual social spaces organized and recognizable through interlinked and ongoing discursive action (413). Although they can enlist people in collective action, publics, in this view, are dynamic entities that “come into being” through “texts and their circulation” and act “in the temporality of . . . [this] circulation” (413, 421). In one sense, then, publics can be thought of as the shifting effects of rhetoric and its circulation. At the same time, publics can be formed by and comprised of embodied actors that assemble and act in and across materially conditioned contexts. Acknowledging the embodied actions and material contexts of publics is not to deny their dynamism and contingency. However, it might, as Grabill (2010) argues, prompt rhetoricians to ask more “empirical questions of how people create public spaces” and “exigencies for gathering” (194, 199). Competing concepts for understanding publics have also informed rhetorical and other humanistic studies of health and medicine, prompting my call to consider further ways of merging the discursive and material in medical humanities scholarship. The first strategy I advocate comes from Katherine Hayles’ (1999) theorizing of the relationship between bodies and embodiment. Borrowing from Elizabeth Grosz (1994), Hayles describes bodies as “social and discursive concept[s]” formed in relation to normalizing values (196). Although they are often purported to capture embodied subjects and their experiences, bodies-as-constructs are normalized, abstractions of these experiences (197). This notion of bodies resonates with Warner’s sense of discursively constructed publics. In her contribution to this special issue, Jennifer Malkowski usefully explicates how social scientists and other scholars articulated the contested bodies of “bug chasers,” a construct rhetorically normalized through perceptions of risk, irrationality, and irresponsibility, and contained through distancing from the construct of the general public. In addition to critiquing this discursive-ideological construction, Malkowski argues for a notion of bug chasers as a medical counterpublic whose “contextual exigencies” might more broadly inform public health responses to HIV/AIDS. In
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her critique of normalizing bodies, Huiling Ding explains how notions of risky Asian immigrants and travelers were used in arguments for voluntary and “coerced” quarantines in North American communities responding to the H1N1 flu. Hayles (1999) distinguishes bodies from embodiment and embodied experience, which she describes as “contextual, enmeshed within the specifics of place, time, physiology, and culture, which together compose enactment” (196). Whereas bodies need not be tied to contexts, embodiment and the incorporating practices of embodied subjects cannot be removed from them. Whereas bodies are idealized categories, embodiment is characterized by “individual enactments” that are “improvisational” (197). Whereas bodies function as normalizing cultural constructs, embodiment, as heterogeneous instantiations of experience, resists normalization and, in this way, complicates or “destabilizes” bodies (197). In their study, Heidi Y. Lawrence, Bernice L. Hausman, and Clare J. Dannenberg argue for reframing larger imagined communities of antivaccinationists and vaccine hesistant publics (examples of bodies formed from “statistical commonalities”) with local articulations of vaccine-related rhetorics and decisions, performed within the contexts of families’ “psychosocial spaces” (111). Philippa Spoel, Roma Harris, and Flis Henwood draw on interviews with older adults to similarly problematize hegemonic notions of health citizenship, explaining how such notions are “taken up, negotiated, and potentially resisted or destabilized in diverse and complex ways by particular citizens in particular times and places, and for particular purposes” (132). In this case, too, bodies of health publics are complicated by the actual embodied experiences of health users. Perhaps more important than Hayles’ (1999) bodies-embodiment distinction is her call to articulate the two together, accounting for the ways they are mutually conditioning (198). Hayles imagines this relationship as a feedback loop, discussing how “changes in experiences of embodiment bubble up in language” and how, at the same time, “discursive constructions affect how bodies move through space and time” (206–207). Elaborating how this feedback loop plays out between constructions of health and medical publics and people’s embodied experiences around health is crucial for understanding and productively intervening in health and medical practices. Even as they focus more on one part of the feedback loop, the essays in this issue begin to illustrate what rhetoricians might gain from mining what Rayna Rapp (2000) calls an “‘analytic tension’ between abstract and categorical labels and the descriptive particularity of individual stories” (9). Patty A. Kelly, for example, traces the rhetorical process through which patients’ “reported speech,” was “decontextualize[d], dehistoricize[d], and universalize[d]” into data supporting new DSM-5 diagnostic criteria. Her analysis also points out how these standardized language constructions, in turn, help facilitate the “uptake” of diagnostic practices “across an array of social institutions” (176). Indeed, the primary arguments of several essays in the issue involve further accounting for the relationship between bodies and embodied actions. In their call for “hybrid” policymaking forums, Christa B. Teston, S. Scott Graham, Raquel Baldwinson, Andrea Li, and Jessamyn Swift argue for adapting the FDA’s public hearings to “enact not just heterogeneous stakeholder inclusion, but also . . . the ontologies that stakeholders bring to bear upon the deliberation” (165); such ontologies, which include practitioners’ clinical experience and patients’ “lived experience of illness” can usefully complicate the bodies of patients represented in clinical study statistics (161). Malkowski, Ding, and Lawrence et al. similarly advocate for “foregrounding contextual exigencies,” to use Malkowski’s phrase, as a means to not only complicate depictions of medical publics but also to learn from and better engage these publics (223). To return to my extended example, the rhetoric around personal health records (PHRs) touts their ease of use and benefits to health consumers and also to a number of other more specific and related publics including seniors, caregivers, parents, students, travelers, and physicians. Through its numerous patient and provider empowerment narratives, the “My PHR” consumer
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website is an especially rich space for exploring this rhetoric. For example, a blog entry on the site titled “A woman’s Facebook personal health record saved her life,” describes how emergency room doctors were able to access vital medical information about a woman in a coma through the records she kept on her Facebook account, information that helped them treat her and ultimately aid her recovery. Not unlike the “health citizens” described in the government rhetoric analyzed by Spoel et al., the health consumers invoked in the “My PHR” site are called on to more actively and responsibly manage their health and/or that of their families. This personal health care management, in turn, would necessarily lead to empowerment, particularly when they engage health care providers. “Be a Powerful Patient!” and attain “Personal Health Ownership” trumpet two pages of the consumer website. Interestingly, this appeal to control and empowerment seems to be contradicted, to some extent, by the rhetoric’s extreme emphasis on ease of use, particularly when vendor products like “My Instant Medical Information” and “myMediConnect” are marketed as “doing the work for you.” In her discussion of the body-embodiment feedback loop, Hayles argues that “discursive constructions,” in this case constructions of PHR users and potential users, “help to structure the interfaces between bodies and technologies” (207). Rhetorics of ease and empowerment have clearly informed the design of PHR products, including Web-based interfaces that can be accessed from a number of locations and function to assist with colleting and organizing records, managing appointments, and even transmitting health information to providers. These products, in turn, make certain embodied practices by users possible and others less possible. Some users can use PHRs to better prepare for visits with providers or to provide new providers with their health histories. Other users with less health literacy, less access to the Internet, and/or less access to reliable health care may find it difficult or impossible to use such health management systems. Because PHRs are not official legal records protected by HIPAA, vendor-maintained PHRs could also enable the exploitation (i.e., aggregation and selling) of consumer information. Continuing the feedback loop, through which embodied practices can create experiential frameworks that inform technology design and discursive constructs, consumer reactions to PHRs—including the widespread reluctance to use them—have informed designs of EHR patient portals (to emphasize messaging and emailing with providers) and have generated renewed constructions of health consumers as apathetic or overly concerned about privacy. Untangling this feedback loop, of which rhetoric is an integral part, also suggests the utility of another strategy I will describe next—tracking the infrastructures of medicine’s publics.
Tracking infrastructures In 2011, Google announced that it would shut down Google Health, its PHR created in 2008, explaining that the product “is not having the broad impact we had hoped it would” (Brown, cited in Lohr 2011). This story of a failed PHR is not unique, prompting one observer to declare “rest in peace” (Grohol 2011) and prompting the question, “How do we reconcile the apparent reluctance of publics to adopt PHRs with the ease and empowerment promised through them?” One answer is to look more closely at the infrastructures of the publics invited to use PHRs. In the traditional sense of the term, an infrastructure refers to a material, technological, and/ or organizational foundation or framework that supports activity. Considering the infrastructures of PHRs in this regard might entail examining the underlying technologies, designs, and capabilities that enable them to support some activities and not others. It might involve, for
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instance, examining the potential of PHRs to synch with EHRs and adhere to technical (e.g., interoperability, patient data) standards. Even considering infrastructures in this limited sense could open up sites for rhetorical study; scholars examining arguments about the ease and efficiency of PHRs might relate such arguments to various infrastructural incongruities among PHRs, EHRs, and other medical systems and practices (e.g., provider workflow). In the rest of this afterword I want to advocate for a broader notion of infrastructure and its methodological utility for rhetoricians of health and medicine. In their work on information infrastructures, Susan Leigh Star and Karen Ruhleder (1996) characterize infrastructures according to several criteria that others have used to consider rhetorical practices (see, for example, DeVoss, Cushman, and Grabill 2005; Grabill 2007); these criteria—which include “embeddedness . . . in other structures, social arrangements, and technologies” and “links with conventions of practice”—emphasize the connection of infrastructure to social practice. In this formulation, Star and Ruhleder shift the emphasis from the components of infrastructures to how, where, and when infrastructures are enacted through activity (112). Developed by anthropologists, the notion of “sociocultural infrastructures” can also usefully expand our sense of infrastructure enactment, helping us focus on a wider range of nonmaterial resources on which users and publics draw and expanding our purview to users’ larger lifeworlds. In her study of how communities of women interpret and respond to prenatal diagnosis, anthropologist Rayna Rapp (2000) provides a compelling analysis of such infrastructures, which for the women she interviewed included “a rich and diverse range of culturally organized gender relations, kinship connections,” and socioeconomic aspirations (24). In Rapp’s study, infrastructures involve a broader range of factors that shape the uptake of health and medicine, and these factors involve both bodies (e.g., cultural constructions of pregnant women) and modes of embodiment (e.g., women’s ways of relating to their families and communities). Several of the essays in this issue, too, explore this broader sense of how publics engage health and medicine across contexts and in relation to a variety of sociocultural frameworks. Lawrence et al. argue “for the need to know from the inside out why people believe what they do and how those beliefs are linked to other values and practices in their daily lives” (126). Some of the people they interviewed drew on cultural and familial discourses and values—part of their sociocultural infrastructures—in enacting “practical, non-scientific behaviors designed to protect the self from needless encounters with disease” (124). Ding’s study discusses how health publics, including mainland Chinese netizens, drew on both digital and communal infrastructures including social networking tools, communal values and modes of decisionmaking to develop their own tactics for containing the “imported” health risk of H1N1 (204). Spoel et al. provide a view into how people’s vernacular opinions (Hauser 1999) about healthy eating and active living are “rhetorically produced through [their] . . . discursive negotiation of prevalent discourses” and everyday health contexts (133). Of particular interest to our discussion of infrastructures is the observation by their study participants that the government’s call for healthy living was not sufficiently supported by community infrastructure and resources. Drawing from but also expanding our rich repertoire of methods for analyzing how discourse works in context, rhetoricians might more fully examine the infrastructures that emerge across the lifeworlds of health and medical publics. Hannah Bellwoar (2012) provides a promising example in tracking how a pregnant woman makes meaning from (and in some ways repurposes) patient information in relation to a variety of other texts and resources in her lifeworld—including her embodied experience and knowledge. As Bellwoar points out, much rhetorical scholarship has focused on how health and medical texts get produced, an observation that could be extended to the medical humanities more generally. Other rhetorical and other humanistic studies have moved, to some extent, beyond such a text-based focus,
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examining patients’ and others stakeholders’ encounters with health and medicine. The health and medical humanities could do more, however, to understand what embodied users bring to these encounters, what they take with them, and how these meanings get transformed in relation to a range of other ideas, tools, sponsors, relationships, and resources. This is how a methodological emphasis on infrastructure can be useful. In his work on infrastructures that support a community’s civic (including rhetorical) action, Jeffrey Grabill (2007) illustrates how we might merge technological-material and sociocultural understandings of infrastructures. The civic infrastructures he examines and proposes involve a combination of technologies, interfaces, community and organizational knowledges, institutional standards, values, interpersonal relationships, literacies, and other elements that shape the rhetorical practice of publics (see, for example, 29, 40, 69). Grabill usefully emphasizes more specific functions of infrastructures that could be useful to rhetorical studies of health and medical publics: their potential to build capacity for and directly enable civic rhetorical action. Indeed, Grabill employs the rhetorical term metis in his formulation of “metis-capable infrastructures” that are designed around users’ civic needs and that enable their tactical, resourceful knowledge management (91–94). Examining the infrastructures of PHRs through a more expansive lens would require us to shift our primary analytic gaze from the rhetorics about them and the technologies themselves to the context-specific practices of publics, as noted by Keränen. But such an examination would add a focus on the socio-material resources—including rhetorics—that emerge from and shape these practices. Given that PHRs have been marketed as easily embeddable into users’ existing practices (ranging from daily schedule management to exercise tracking to vacationing to pet care), such an examination seems particularly relevant and might reveal reasons why the rhetoric of ease and empowerment (which imagines a particular public of users) has not been accompanied by widespread use. What are people’s exigencies for using PHRs, health and medical humanists might ask, and to what extent do these conform to the capabilities of PHRs, or patient portals of EHRs, for that matter? For starters, tracking the infrastructural use of PHRs would likely reveal issues or barriers related to patients’ experiences with new media and privacy, to patients’ varying health literacies and values, and to patients’ access to provider cooperation and information. A recent study of diabetes patients using Internet-based health records found health literacy and digital literacy to be major factors in consumers’ ability to meaningfully access and use digital PHRs (Sarkar et al. 2010). Many providers managing EHRs do not want patients to have access to everything in their official health records, and patients must sometimes complete several steps to authorize and facilitate the release of their information for inclusion in PHRs. Unlike the rhetoric surrounding EHRs— which have been described as clunky, disjointed, and a burden to adopt, learn, and use—the rhetoric surrounding PHRs has mostly glossed over their limitations. Examining the broader infrastructures around the use of PHRs could open them up for critique and improvement. Examining the embodied experiences of publics—by observing them in the contexts across which they move and by teasing out how they are shaped by and, in turn, shape discursive constructs of publics—can help us arrive a better infrastructural understanding of health and medicine’s publics. Conversely, a focus on enacted infrastructures—including their material, sociocultural, and rhetorical dimensions—can help us tease out more specific dynamics of the body-embodiment feedback loop. Hayles (1999) argues that technologies play crucial roles in this feedback loop, as they can shape changes in incorporating practices (practitioners’ timeon-task, patterns in patient-doctor communication) and, by extension, experiential frameworks that, in turn, influence discursive constructions (205). This is one reason why relatively new health technologies like digital PHRs and EHRs make promising starting points for investigating publics and their infrastructures.
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This special issue usefully illustrates how rhetoricians can contribute to understandings and practices of health and medicine’s publics, and yet it also suggests some directions for expanding rhetorical conceptions and methodologies, particularly around the roles of rhetoric in health and medical practices. Interviewing members of publics is a promising start, but we should also continue to experiment with rhetorically-oriented qualitative and even quasiethnographic methods, as Keränen states, “to capture the complex texture of public action, understanding, and meaning generation” (104). Perhaps in collaboration with other types of scholars, health and medical humanities scholars should continue to experiment with different approaches to answering such questions as, “How do discursive constructions of publics and more specific instantiations of embodied experiences mutually shape each other?” and “What do the infrastructures of health and medical users look like and involve in their enactment?”
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