This panel engages critically with Public Health to raise questions of accountability. Significant transformations in data infrastructures allow for strong calculations, casting non-compliance as deficit and target for intervention. How can the excluded be recovered to rework boundaries drawn?
Public Health is currently evolving, expanding and recursively reinforcing itself as a major governance project in which health authorities' governmental concerns meet and blend with epidemiology and psychology. Significant transformations occur across the broad range of Public Health practices, ranging from an expansion in institutional infrastructures that run large scale digitalized health surveys to the availability on the market of an array of digital sensors that allow for self-tracking and quantification of the self, and the proliferation of online services and programs for the monitoring, sharing and promotion of healthy behaviors; from internationalizing genome wide association studies (GWAS) to a market for over the counter kits and services for genetic testing and the development of personal genomics. The enfolding of digital technologies into the material-discursive practices that constitute Public Health engenders significant transformations, allowing for larger data sets, automatic processing, cost reductions and forms of strong calculation. Mainstream Public Health research is silent about matters of the reception of public health interventions, casting non-compliance in terms of deficits that become a target for more intervention.
This panel invites papers that address these issues at three interlinked process levels: a) the expansion of new configurations in data production infrastructures; b) changes afforded by digital technology in the 'apparatuses of measurement and mapping'; and c) the invention of epidemiology's notions of probabilistically inferred causality, the use of counterfactual reasoning and related use of deficit-models in the explanation of non-obedience. Can what has been excluded be recovered to raise questions of accountability?
This panel is closed to new paper proposals.
Check here if you are mad, bad or sad: dLTC surveys and their consequences
Through the study of 'apparatuses of observation, measurement and mapping' in digitalized, low transaction cost surveys, we provide a critical account of population health images that are produced and published with the combined authority of governmental agencies and the science of epidemiology.
Today we can witness, in Norway and other affluent countries, a proliferation of population health mapping activities, facilitated by the ubiquity of information and communication technologies for the sourcing, processing, presentation and communication of large amounts of data. To an increasing degree, these data-infrastructures are designed and managed by, or on behalf of, governmental agencies with the science of epidemiology enjoying an unchallenged hegemonic status as the evidence base underlying public health policies.
This paper aims to reflect on the making of population health images, that is on institutional and methodological data-production infrastructures through which population health images are produced. Ungdata, a fast growing and expanding mapping system, running digitalized, low transaction cost (dLTC) surveys of living conditions and health related behavior of 16-18 year old teenagers will serve as an illustrative example throughout the paper.
The Ungdata studies have shown that there are systematic gender differences in the mental health of Norwegian adolescents. Nearly 25 percent of girls from the age of 15-16 struggle with depressive symptoms, approximately 20 percent struggle with daily physical health issues and as many as every third female is dissatisfied with herself (NOVA,2017).
Through the critical scrutiny of Ungdatas' 'apparatuses of observation, measurement and mapping' that are constitutive of the public health images produced, including the deployment of embedded ICT-infrastructures in dLTC-surveys, we offer an admonishment against the unrestrained confidence in population health images that are produced and published with the combined authority of governmental agencies and the science of epidemiology.
Reality capturing states of mind
This paper provides a critical analysis of various digitalized agencies of observation that purport to assess a population´s mental health from imprints in digitally captured data.
In recent years digital technology has been folded into a number of what Karen Barad calls 'agencies of observation' that aim to assess and map mental health and illness on a population level. These include the digital measurement of prosodic qualities of voice and facial gestures (not recording the content of speech), the analysis of spontaneously generated text in social media messages, and forced choice ticking of check boxes as answers to questions in digitalized surveys. As the knowledge base of public health policies the latter produces mental health and illness as an object of governance.
These agencies of observation are different from dialogue based forms of diagnosis. They don´t talk to people, but aim to assess states of mind from the digitally sampled imprints private mental states are assumed to have made on other surfaces. They share an assumption that mental states are independently existing, propertied objects in people´s minds that express themselves consistently and predictably because one impulse will show parallel changes in word choice in speech and writing, in voice prosody, in facial and body gestures and in forced choice answers to question about mental illness.
This paper explores several avenues of criticism by unpacking embedded notions of categorization and probability and by mobilizing recent neuropsychological work on the predictive brain, brain organization, neural substrates of concepts and conceptual blending and the role of language as linguistic anchors.
Digital epidemiology and the disruption of public health
'Digital Epidemiology' is the algorithmic analysis of social media data rather than of cases reported through medical and public institutions. This paper discusses the significant political and epistemological implications of this digital disruption of public health.
'Digital Epidemiology' is the algorithmic analysis and digital visualisation of previously untapped data from social media, internet search terms and access-logs. This new kind of computational epidemiology is supposed to disrupt conventional epidemiological measurements of health and disease. Significance of medical data is no longer ultimately determined by a doctor's diagnosis but allocated to models, theories and semantic ontologies. This considerable expansion of the production, gathering and structuring of health-related data is purposefully placed outside of the traditional institutions of governmental health surveillance and usually to be found in independent research labs, start-up incubators or in the digital industry.
Using semi-structured interviews with digital epidemiologists and utilising a historical revision of formal epidemiology this paper will address two urgent questions the digital disruption of public health provokes:
First, a political question addresses the shifting accountability of a 'start-up epidemiology' in public health. While the promise of turning almost any data source into medically relevant information escapes and undermines the rationale of traditional government-led health surveillance, new constellations emerge, in which questions of austerity, resource scarcity and digital innovation align.
Second, an epistemological question focuses on the increasing significance of models and algorithms in the visualisation of health trends, disease transmission routes or treatment allocation guidelines. While the sheer volume of new empirical digital data creates a new optimism about the 'end of theory' in epidemiology, this paper follows the curious resilience and persistence of traditional concepts and models, applied in epidemiology for almost a hundred years (Morabia 2004).
Whose feedback is it anyway? Enacting agency in online health experience reports
Online patient feedback is increasingly used to obtain views from patients. This results in healthcare services being shaped in the name of certain 'patients' at the exclusion of others. This paper addresses the changing nature of health services as a response to patient experience data.
Online patient feedback is increasingly becoming a favourable route through which to obtain the views, suggestions, complaints, and compliments from patients. But what kinds of patient is this move towards online feedback creating? Who is given a voice, and who is silenced? Does this sharing of personal experiences foster informed choice, or create confusion? How do healthcare institutions and their staff decide which of the many modes of online feedback to give attention and weight to? Does a Facebook post count? Does a 3,000 word blog recounting an operation count? Or must the feedback be solicited through more sanctioned and vetted means such as dedicated sites and online surveys?
This paper deals with issues of agency, fluidity (c.f. de Laet & Mol, 2000) and negotiated multiplicity (c.f. Mol, 2002). Who is given the potential of agency, and from whom is it taken away? What are the many, fluid uses that the feedback is put to? To what extent are some different avenues of feedback coordinated into a unified whole, at the exclusion of others?
Drawing on insights from an ethnography conducted in UK NHS Hospitals, this paper develops a form of 'empirical ontology' (c.f. Law & Lien, 2012) in the context of online patient feedback, as well as tending to arguments about 'representing and intervening' (e.g. Hacking, 1983) by problematising the 'who' that is created by online feedback - not just in terms of a 'feedback-able patient', but in terms of a 'response-able healthcare institution'.
EU blood supply risk governance and MSM deferral in Europe: longitudinal case study of sociotechnical imaginaries mobilized in the public debate on the deferral of Men who have Sex with Men in Belgium
This paper discusses the evolution of sociotechnical imaginaries mobilized in the debate on MSM donor deferral in Belgium between 2003, the first Blood Directive, and 2017, adoption of 12 month deferral. It highlights the coproduction of EU epidemiological and national sociotechnical imaginaries.
In the EU, successful blood procurement depends on the public trust in national Blood Establishments. Repeated criticism to the exclusion of Men who have Sex with Men (MSM), however, hampers that trust. In response, numerous member states relaxed their deferral policies. Previous research in Science & Technology Studies highlighted the sociotechnical nature of such controversies, and the sociotechnical lock-in that can result from attempts to surpass explicitly political claims through the use of epidemiological imaginaries. We aim to contribute to this field by exploring (1) the coproduction of imaginaries on the EU and the local/national level, and (2) lock-out strategies used by multiple stakeholders in the debate.
We developed a longitudinal, interpretive study of the paradigmatic case of Belgium, where deferral was recently relaxed from permanent to one year (MSM1). We studied the recurrent discursive elements mobilized by stakeholders between the implementation of the first EU Blood Directive (2003), and MSM1 (2017). Our data comprises Belgian newspaper articles; official communication by a Belgian BE; and policy recommendations of the Belgian High Council for Health, advisory organ to the Minister of Health.
We show how stakeholders shifted their argumentation on five emergent categories throughout the debate: policy aim, responsibilization, science-politics dichotomy, legitimizing, and challenging group-based deferral. We found four overlapping phases of debate: classic epidemiological imaginary, challenging key elements, open/contentious debate, and re-adjustment/-appropriation of the epidemiological imaginary. We found continuous (re)performance of the EU imaginary, although readjustment included localized, non-epidemiological argument categories, e.g. practicing citizenship through donation.
The anthropology of health disobedience
This paper seeks to go beyond the deficit model as the dominant framework applied in explaining non-compliance and health disobedience. Instead, it suggest (re-)contextualized 'thick descriptions' of health related behavior.
Within the domain of Public Health policy, in which the science of epidemiology holds a hegemonic position as a provider of knowledge, individual behavior is framed as a determinant influencing states of health and therewith a key target in public health intervention studies. Hence, people's 'health behavior' is ordered into etiological models of disease and illness. In its explanation of non-compliance to public health intervention, epidemiology rests heavily on the notions of probabilistically inferred causality, the use of counterfactual reasoning and related use of deficit-models. People's health disobedience is likely to be seen as caused by something lacking, whether it be knowledge (health illiteracy) or lack of access to other health engendering assets.
This paper seeks to go beyond the deficit model as the dominant framework applied in explaining non-compliance and health disobedience. Instead, it suggest (re-)contextualized 'thick descriptions' of health related behavior. This implies treating beliefs and ways in which people live their everyday lives as inseparable from how they respond to science produced knowledge and recommendations aiming at promoting 'good health behavior'. Variations regarding how people share the problem definitions produced by scientists, adherence to the imaginary of controlling one's own health destiny, general inclination to governance by authorities and elites are all examples of relevant dimensions for understanding compliance and disobedience. Health disobedience should be contextualized and studied as an effect of what people possess, not as a result of something they lack in a pathologizing and implicitly, counterfactual explanatory framework.
This panel is closed to new paper proposals.