Henriette Langstrup

Interpellating Patients as Users: Patient Associations and the Project-Ness of Stem Cell Research

The author traces the ways in which various patients and collective associations of patients come to regard themselves as the users of future stem cell technologies. The author uses Althusser’s notion of interpellation (1971/2006), whereby an identity is the result of the situated encounter of a subject and an authority, to analyze the ways in which patient associations’ current involvement with basic research is related to the enactment of science as a series of technology development projects. The author argues that this ‘‘project-ness’’ forms a certain privileged logic that interpellates patients and their associations in specific ways. Through the listings of illnesses circulated in the mass media, which are hoped to be treatable or curable with stem cell therapies, patients come to recognize themselves as the projected users of stem cell technologies. The author fleshes out the process of this userfication and the various responses made by patients and their associations when hailed by the entrepreneurial projects of stem cell research.

Global Diabetes Encounters: Accounting for Health Technologies in the Global

As already recognized, though little theorized within International Relations, the capacity of technology to ensure the achievement of preset policy goals is often grossly overrated. Drawing on Science and Technology Studies, this chapter proposes a lens to investigate global encounters, which take the technologies, involved in such encounters seriously both analytically and methodologically. This approach provides the opportunity not only to see how technology plays an important part in shaping global encounters and gets shaped itself in the process. It also allows us to appreciate the complex and productive nature of the friction these encounters produce. The proposed lens is used to analyze a specific global encounter illustrative of the way in which technologies increasingly become central to global encounters concerning health. In this encounter Danish and Indonesian partners are engaged in implementing a Danish developed quality assurance software for diabetes management in Indonesian primary care. We analyze what is at stake for the partners and what role the technology plays in shaping these stakes. The analysis points to the ambiguous and often contentious nature of technology in global encounters. The challenges met as the technology moves from Danish health care to an Indonesian context cannot be explained with reference to generalizing notions such as structural barriers, local culture or stakeholder interests. Instead attention to the frictions of global encounters provides insights to the conditions for and effects of movement of health technologies across geographical borders and thus to research at the intersection of Global Health and International Relations.

Tactics of material participation: How patients shape their engagement through e-health:

The increasingly popular goal of ‘patient participation’ comes with a conceptual vagueness, at times rendering it an all-too flexible political trope or platitude and, in practice, resulting in unclear invitations to patients. We seek to open up the alluring yet troubling figure of patient participation, by inquiring into how patients enact participation in different ways. Based on close ethnographic engagement in a user test of the e-health system P-Record, we show how a group of heart patients shaped their participation along three lines of tactics of material participation: ‘activism’, ‘partnership’ and ‘compliance’. Our argument is twofold. First, we suggest that any invitation to participate carries the inherent paradox that, although certain ideas of participation may be materially embedded, e.g. in e-health or other ‘participatory technologies’, the enactment of participation cannot be foreseen. To participate is to creatively make do with the situation and technologies at hand, making participation normatively variable in practice. Second, we suggest seeing these normative variations as distinct, though interwoven, lines of tactics that bring about different expectations and, to different degrees, allow patients to handle ambiguous invitations to participate.

Emerging versions of patient involvement with Patient Reported Outcomes

It is a central argument in the growing Danish PRO-arena, that a large-scale collection of PRO from patients in the Danish Healthcare system will pave the way for more genuine patient involvement in clinical decision-making, quality management and governance of the health services. In this paper I discuss how patient involvement is being (re)configured when increasingly connected to national visions of participatory healthcare. A central discussion centers on ‘meaningful use’ of patient-generated data promoting patients’ expectations and experiences as a criterion for how to proceed with the national use of PRO. But how do assumptions of what constitutes meaning for patients interact with the kinds of roles that patients are expected to take on with PROtools? What forms of participation are assumed to be meaningful and thus good and which are not? In sketching emerging versions of patient involvement with PRO, I want to point to the need for further empirical exploration of how patients and professionals engage with PRO in specific daily practices and to stimulate a general discussion of all too simple normativities of the so-called ‘participatory turn’ in healthcare. I draw on empirical insights from an ongoing study of establishment of a national initiative for systematic collection of PROs in Denmark. Introduction: The emergent Danish PRO-arena ”The patient is the new hype in the health services” a Danish newspaper heading (Information, 2016) professed with reference to the interview with leading

Generating Local Needs Through Technology: Global Comparisons in Diabetes Quality Management

The rhetoric of need is commonplace in discourses of technology and innovation, as well as in global health. Users are said to have a need for innovative technology, and citizens in resource-poor regions to have a need for improved health care. In this article we follow a global health technology—more specifically, a piece of software for monitoring diabetes quality—from Denmark, where it was developed, to Jakarta, Indonesia, where it was introduced in 2012–13. Using ethnographic material, we show how the need for a specific technology is constituted through the very process of moving a technology from one setting to another. Central to this process of a technology traveling, we suggest, is the role played by comparisons invoked by actors and the technology itself. These comparisons become instances of evaluating local practices, thus determining what is needed in tackling a health challenge locally. With this focus on the interrelations among technological innovation, local needs, and comparisons across global distances, we aim to contribute to critical discussions of the prospects of traveling technologies for global health, as well as drawing attention to the recipients agency in (re)shaping the capacity of the technology and thus the need-solution complex even in the face of powerful asymmetries.