Access to medicines is a critical ongoing challenge to advancing goals of health equity. Recent changes in the political economic and technoscientific domains of pharmaceuticals beg a reexamination of shifting processes in this space, especially emergent forms of collective action to address structural conditions for making new and old drugs. In particular, two trends in science—open science and community biology—have created the social and technical conditions through which new alternative imaginaries have emerged to research, develop, and make medicines. This dissertation offers an ethnographic account of these actions to common pharmaceutical knowledge through open science and lay participation in drug research. I examine two sites: the first site is a diffuse network of academic and nonprofit initiatives applying open science to drug research and development; the second site is a citizen science initiative, Open Insulin, leveraging a direct social action approach to make insulin in a community lab.Drawing on 29 in-depth interviews, over 300 hours of observations of citizen scientists’ organizational and research activities, and content analysis of journal articles and university and nonprofit organizations’ policies and websites, I trace a burgeoning movement to apply “open” principles and practices to the research and making of pharmaceuticals, an area I refer to as open pharma. I begin with an analysis of this open pharma movement by examining three key characteristics. First, I identify the major narratives discursively employed by actors to frame the movement and provide rationales to mobilize others, often drawing on market logics. Next, I trace the active building and institutionalizing of open pharma through the establishment of organizations and open sharing policies. Then I reveal sites of resistance actors experienced in university settings related to publishing and commercialization imperatives—which often translated to patent imperatives. My next set of findings focus on Open Insulin and the connections between their organizational structure and goals for creating more egalitarian alternatives to corporatized science practices and logics. I surface how membership and decision-making authority acted as key nodes of tension and change within the group, and I illustrate the project’s mission as continuously constructed in relation to these nodes. Finally, I further explore the discursive production of Open Insulin’s mission through two competing visions for making affordable insulin: an unprecedented but more transformative approach for “community manufacturing” through medicine cooperatives, and a more common and socially legitimized approach through a contract manufacturer partnership. As group members organized toward these visions, I unpack specific challenges groups face in looking to resist processes of capitalization in highly technical and regulated domains such as pharmaceuticals. Through my tracing of movement practices and aims, I illuminate important entanglements between divergent approaches to social change, markets, regulatory regimes, and technoscientific infrastructure that construct and value openness in pharmaceuticals. This research articulates alternative imaginaries for how to organize biomedical knowledge production, and how they variously shape projects to intervene in inequities perpetuated by the political economy of health and illness.

Throughout much of clinical history, those working within the arena of pain medicine have conceptualized pain as a musculoskeletal problem. Clinicians adhered to biomechanical explanatory models of pain, seeking out an underlying corporeal source and targeting the body as a site of intervention. Recently, however, some pain specialists have begun to promote the notion that pain is an output of the brain, rather than an input of the tissue. This shift is occurring in relation to both an opioid-related overdose crisis, in which the biomedical community is searching for new solutions to chronic pain, and a neurocognitive turn, in which neuroscientific explanatory models of pathology are gaining popular and clinical authority. In this dissertation, I trace the ways in which pain is being newly biomedicalized, or neuroscientized, alongside these trends. I follow neuroscientific understandings of pain as they travel through the overlapping biomedical domains of production, dissemination, and uptake, arguing that a neuroscientization of pain repositions patient agency and responsibility.

Drawing upon interviews with pain neuroscientists and clinicians, as well as ethnographic observations conducted in a neuroimaging pain laboratory, two medical schools, and three clinical pain groups, I trace the policies, discourses, and subjects that both constitute and are constituted by these transformations occurring in pain medicine. I first explore the domain of production, demonstrating the means by which pain is produced as a neuroscientific object. Here, I argue that the structures of the scientific process of inquiry necessarily limit and restrict the various subjectivities inherent in pain by describing how pain scientists go about disciplining complexity. Next, I examine the domain of dissemination, drawing on descriptions of the opioid crisis and its proposed solutions in order to characterize them as thoroughly biopolitical in nature, attending to its focus on risk and production of specific subjectivities, the surrounding politics of knowledge production, and the flattening of complexity as policies and clinical discourses simplify both opiates and pain patients. Lastly, I attend to the domain of uptake, examining the ways in which neural and plasticity discourses are taken up in clinical settings, shaping notions of patienthood by invoking a simultaneous opportunity for optimization and obligation for self-regulation. Taken together, this dissertation asserts that a biopolitical transformations in pain medicine are producing new understandings of what pain is, how it should be managed, and who stands to benefit from these new configurations.

This dissertation presents findings from a qualitative study of hospitals and social activisms aimed at hospital transformation in San Francisco. Research questions address how hospitals have been geographically and socially placed in the city over time, and how this placement may have set up hospital administrators’, local government’s, and community groups’ more recent actions around hospital social construction and geographic placement. Data include documentary and archival evidence as well as qualitative interviews. Findings are divided into two parts: the first follows the historical development of the city’s hospitals from c. 1848 to 2001; the second explores the redevelopment of California Pacific Medical Center hospitals from 2001 to 2013. Key findings are as follows: Historically there have been few hospitals in the city’s southern/southeastern corridor, relative to government constructions of area need and to distribution of hospitals in the city. This disparity has been produced in tandem with structural racism and classism in the city’s urban development. Federal healthcare policy development and implementation over time in part exacerbated this healthcare inequity. In more recent years, hospital administrators, local government officials and members of community organizations have oriented to hospitals according to diverse constructions of the efficiency of care, healthcare disparities, and hospitals’ relationships to communities. However, through a variety of social-structural and cultural contingencies, social movements have produced changes in hospital social boundaries and placement.

In 2007, Apple, Inc. released its first smartphone, the iPhone, which included a built-in accelerometer that continuously collected data on user movements. However, users were not invited to engage with data amassed by the accelerometer until 2014, when the company released “iOS Health,” now a standard feature of their devices that allows users to track their movement and other health metrics. What changed? In this dissertation, I situate this shift within the context, rise, and promises of consumer health technologies. I explore the social, economic, and technical conditions through which consumer health technologies become possible, valuable, and desirable, such that they proliferate.

Drawing on interviews with venture capitalists, angel investors, and founders and employees of digital health and wellness companies, as well as ethnographic observations of digital health and technology events in the San Francisco Bay Area, I trace the kinds of capital, ideologies, subjects, and infrastructures that both constitute and are constituted by these technologies and their futures. I first explore the consumer electronic infrastructure and financing strategies that I argue together make consumer health technologies possible and contend that speculation around future value is built into how capital is advanced in the present, which critically shapes these technologies’ trajectories. I then argue that, despite the failures and limitations of consumer health technologies, investors and founders consider these devices to be valuable because they assemble the infrastructure for a future by stabilizing ideas about how health should be known, collected, measured, practiced, and valued in ways that are increasingly hard to see. Lastly, I argue that consumer health technologies proliferate in part because consumers are being enrolled into the lifestyles and subjectivities through which these technologies make sense and feel self-evident. I contend that this enrollment creates a social infrastructure that secures value in future by inculcating subjects into the logics of a tracked life in the present. Overall, this dissertation reveals how assembling subjects and standardizing data streams circulates promissory value by laying the groundwork for a passively tracked future that assembles and secures life as an asset in the present.

Over the past two decades, numerous political actors have called for greater accountability from health care providers on the “value” of the care they provide. Against the backdrop of variation in health outcomes, rising medical expenditures, and persistent health inequities, these actors have mobilized behind the use of quantified quality measures to hold providers to account. Through new mechanisms of public accountability, quantified knowledge has emerged as a central node in the reconfiguration of medical-social relations in the twenty-first century. I examine this widespread phenomenon of “reform by numbers” through a three-pronged analysis. First, I trace the historical drivers of contemporary delivery system reform efforts, highlighting the role of public critique in making sense of the origin of quantification. Second, I analyze the deliberation process of three institutionalized quality measures via a national public-private forum, identifying the values and priorities that inform the design of quantification. Third, I examine the local politics within new “data-driven care” strategies, emphasizing the emerging consequences of quantification. In our current era of cultural anxiety over the value of prominent social institutions, this turn to quantified knowledge, data, and technology is widely expected to address longstanding social problems. However, I argue that this phenomenon merely displaces old conflicts onto emerging technical domains while creating new sources of contention across the rapidly evolving social landscape. This results in the widespread expansion of the institution itself as well as an intensification of the political nature of its activity, ushering in what I term the sociotechnical transformation of American medicine.

This dissertation uses Black Feminist Theory as a theory-methods package to examine the lived experience of terminal illness for Black women with advanced cancer. I developed and implemented a Black Feminist Methodology, which seeks to center the voices and experiences of Black women in order to challenge positivist constructions of knowledge production and increase research on, by and for Black women. This dissertation explores the intersections of race, gender, class, spirituality and health within the lives of Black women. Analysis of multiple in-depth interviews with Black women and observations of clinical interactions with their providers reveal new insights into the way these intersections co-constitute and shape the patienthood experience, the patient-provider relationship, prognostic conversations, and treatment and end-of-life decision-making for Black women. First, I examine the impact of financial security or insecurity on the way Black women approach and understand their disease and treatment. I go beyond questions of income and insurance status to illuminate the ways in which class intersects with race and gender for women undergoing treatment for advanced cancer and the implications those intersections hold for how the women view and understand their disease. Next, I expand upon previous research on the role of religion in oncology care to explore how Black women’s faith impacts not only medical-decision making but also their view of self and illness. Finally, I trouble the notion of what counts as an intersectional identity. I posit that cancer patienthood, one’s identity as a cancer patient post-diagnosis, is itself an important identity in studying the experience of health and illness. I describe the way the intersections of race, gender and patient identity impact experiences of patienthood, relationships with providers and understanding of disease and prognosis.