Programme

(T137)
From person to population and back: exploring accountability in public health
Location 124
Date and Start Time 02 September, 2016 at 11:00
Sessions 2

Convenors

  • Martyn Pickersgill (University of Edinburgh) email
  • Susanne Bauer (University of Oslo) email
  • Klaus Hoeyer (University of Copenhagen) email

Mail All Convenors

Short Abstract

This panel explores the pathways from individual to population and back, as they are generated in public health science and programmes. We are concerned with how populations are constructed, and what population data is used for; with who is counted and what counts - and why, and to what ends.

Long Abstract

This panel will explore the pathways from individual to population and back, as they are generated in public health science and programmes. We suggest doing so through the prism of accountability. Public health science is charged with accounting for populations. It does so based on data derived from individuals; in turn, the aggregated data must be found useful for individual persons. Also, public health science and policy must be accountable to society. We are concerned with how populations are constructed, and what population data comes to be used for. In the process, questions emerge regarding what is counted and what counts. Role conflicts may be salient here, such as when individuals are citizens, research subjects, patients, and perhaps researchers or policymakers in their own right. Relevant to all of these issues are the symbolic and material processes through which public health research and policy are represented and understood as legitimate and authoritative - i.e., how public health is made accountable. Yet, at the same time, questions endure around who, exactly, involved actors should be held accountable to, and why. In convening this panel, we simultaneously wish to engage scholars in debates about the relationship between public health and STS. Which areas of public health need STS attention? What can STS learn by moving away from spectacular technologies, laboratories and high-profile science, towards more mundane practices of population-making? Indeed, how can conceptual traditions, empirical insights, and methodological tools from public health propel different forms of innovation within STS itself?

SESSIONS: 6/5

This track is closed to new paper proposals.

Papers

Accounting for populations, persons and pathologies in English initiatives to enhance (the) public(s) mental health, 2005-2015

Author: Martyn Pickersgill (University of Edinburgh)  email

Short Abstract

Drawing on interviews with psychologists and the analysis of policy documents, this talk will show how what counts in public mental health, how who is counting, and how counting is achieved all help to constitute the personhood of the people being counted.

Long Abstract

Concerns have been on-going over recent decades regarding the robustness of UK public mental health infrastructure, and research into how to improve this. These led to considerable investments in efforts to enhance access to psychological therapies. This entailed the translation of persons into populations of need, ill-health, and particular demographics in order to structure new services targeting anxiety and depression. It also involved the translation of populations into persons, since the 'stories' of individuals provided potent symbolic resources to extend and justify economic and clinical investments. Subsequently, persons and populations have been brought into a dynamic relationship through the operations of new psychological services, which involve psychometric assessments at each therapeutic session. These produce quantitative data regarding an individual's recovery which have direct clinical utility - they are also amalgamated across a service to account for the performance of each therapist, and across all services to understand how mental health investments as a whole are performing. The resultant data have implications for resourcing at national and local levels, and hence of the care available to persons and populations. Further, the psychometrics involved rest on specific understandings of pathology; hence, their role in the production of population-level data helps to produce persons who consider themselves in certain kinds of ways. In articulating and further unpacking these issues, this talk will show how what counts in public health, how who is counting, and how counting is achieved all help to constitute the personhood of the people being counted.

Adding life to years'?: Re-configuring health and ageing

Author: Tiago Moreira (Durham University)  email

Short Abstract

This paper examines the multifarious uncertainty which has underpinned healthy ageing policy instruments and programmes since the late 1990s.

Long Abstract

Public health policies and programmes concerned with the management of population and individual ageing have, since the late 1990s, been enfolded by the concept of 'healthy ageing'. Defined usually as the 'process of optimising opportunities for physical, social and mental health' so as to support older people's participation in society, healthy ageing policy instruments aim to monitor and extend healthy life expectancy ('adding life to years'). In so doing, such instruments have relied on the assumption that the relationship between ageing and illness is malleable, a conjecture mainly associated with the 'compression of morbidity' hypothesis (Fries, 1981). Since Fries original paper, there has been disagreement on whether 'compression of morbidity' is found in actual aging populations. In this paper, I argue that this divergence is underpinned by differences in the way population scientists define age-associated illness, how they value, measure and enact health, and how they articulate its network of accountability: what/who is fashioned to legitimately affect the production of health. Analytically, I distinguish and describe three different repertoires: one dominated by the ambiguous role of technology on the relationship between the quantity and quality of remaining life, a second concerned with equipping individuals with capacities for healthy behaviours, and a third emphasising the collective, interacting dimensions of health. I suggest this analysis has implications for rethinking public health policies in the ageing domain.

Beyond the ability to (ac)count. On the accountability in nursing practices

Authors: Ute Kalender (Charite)  email
Christine Holmberg (Charite - Universitätsmedizin - Virchow Klinikum)  email

Short Abstract

The paper draws on ethnographic data collected in study centers of the German National Cohort Study and explores the multi-layeredness of digital care work: Such work has to be done by study nurses to produce good epidemiological data.

Long Abstract

In epidemiological cohort studies the demand for accountability emerges at different points: The initiators and representatives are made accountable by donors of the study like ministries, federal state governments, research foundations and others. The anticipated outcomes must be accountable for coming health policies. The study design and the data quality must be accountable for prospective epidemiological research: The employed researchers are accountable for other researchers that want to use the data in the future. Finally, accountability is an essential component of probands' safety.

Crucial linchpins for the accountability in epidemiological studies are study nurses. They are made accountable for the proband's wellbeing, for the proband's will to participate in the study - often over a long period and at the same time for the quality of the collected data. Study nurses are not only answerable to themselves and others for their own actions - the other is also a double one. It is simultaneously the proband and the good measurement result.

My paper asks how exactly accountability manifests itself in nursing practice and tries to decipher accountability as account-ability - as a specific, multifaceted and maybe in itself contradictory type of care work. Account-ability then shall be used as a term that explores the nature of digital care work in which the self as well as the other is at the same time human and non-human.

Calculating, Reshuffling and Translating Population Data: Epidemiological Risk Scores as Accounting Devices

Authors: Susanne Bauer (University of Oslo)  email
Katrin Amelang (University of Bremen)  email

Short Abstract

This contribution will explore emerging issues at the intersection between STS and public health. It does so by following the production, circulation, adaptation, and renegotiation of an epidemiological algorithm.

Long Abstract

This contribution will explore emerging issues at the intersection between STS and public health. It does so by following the production, circulation, adaptation, and renegotiation of an epidemiological algorithm. As algorithms derived from population studies risk scores have become key elements of "evidence-based prevention". They are tools that calculate individual risk estimates of disease and predict these probabilities on the basis of large epidemiological studies. We follow a risk score ethnographically through several sites to provide empirical insights into the ways in which personal data is translated into population data and vice versa. This paper explores the folding in and of a risk score, in terms of counting, reshuffling and translating population data for a score that is used in primary prevention of cardiovascular disease in Germany. In order to tease out how accountability is produced we will sketch out the multiple layers of a risk score, by examining how accountability is done in risk scoring: First, we will examine the production of the score, the making and doing of population as a resource for evidence. Second, we will inspect the level of the doctor-patient-relation, when enacting the individual by computing and communicating the actual individual probabilities derived from population data. Third, we will explore how risk scores enter health care policy and thus the agendas and accountings as well as ideas about good healthcare of statutory health insurance funds, medical guidelines, family doctors and professional associations of general practitioners.

Making up and managing well populations

Author: Ayo Wahlberg (University of Copenhagen)  email

Short Abstract

Recently, governments have been held accountable for their abilities to improve the ‘quality of life’, ‘wellbeing’ and ‘happiness’ of their populations. I examine QoL, wellbeing and happiness measures as a particular kind of population making.

Long Abstract

Nation states have long been held accountable for their abilities to reduce mortality and morbidity rates through the prevention and treatment of disease. Disease occurrences have been counted to calculate incidence and prevalence rates, just as these occurrences have been correlated with different lifestyle factors (exercise, sedentary work, exposure, sleep, alcohol use, etc.). In this way, public health has been about avoiding or delaying morbid deaths in a given population. Yet in more recent years, governments have been increasingly held accountable for their abilities to improve the 'quality of life', 'wellbeing' and 'happiness' of their populations as a matter of health. Proponents of such measures "strongly recommended the inclusion of indicators of Subjective Well-being… to help guide and measure progress". In this paper, I examine how QoL, wellbeing and happiness measures (e.g. National Wellbeing, Gross National Happiness, EuroQoL) are derived from individuals and then aggregated - what some have called "the science of wellbeing" - as a particular kind of population making. Importantly, I distinguish between disease-related measures (focused on the QoL and wellbeing of those who are sick) and more generic measures. Contemporary public health is increasingly as concerned with the making of satisfied, content and well populations as it is with reducing morbidity and mortality rates.

Patient, population and back: accounting for patient data in Denmark

Author: Klaus Hoeyer (University of Copenhagen)  email

Short Abstract

Drawing on policy analysis and interviews with clinicians, researchers and administrators in Denmark as well as with patients enrolled in research based on their registered data, I explore what comes to be counted, and what comes to count, when developing the data infrastructure of the Danish health services.

Long Abstract

Patients leave behind increasing amounts of healthcare data and biological samples every time they use the health services. Such data can be combined with data from self-tracking devices and mobile phones indicating physical location, as well as data on socio-economic status, school performance, cognitive tests, and data on employment from employers and tax authorities. Based on the accumulated data, in the form of population aggregates used to establish clinical guidelines and preventive advice, data can subsequently be used to guide individuals as well as for planning in the health services. What drives the data circle from patient to population and back? Drawing on policy analysis and interviews with clinicians, researchers and administrators in Denmark as well as with patients enrolled in research based on their registered data, I explore what comes to be counted, and what comes to count, when developing the data infrastructure of the Danish health services.

Patient, population and back: adding a global dimension to the making of international research infrastructures

Author: Zainab Sheikh (University of Copenhagen)  email

Short Abstract

Based on interviews and participatory observation with donors and researchers in a project collecting genetic material in Pakistan and sending it to a laboratory in Copenhagen, I investigate the hopes, concerns and purposes involved in the making this international research infrastructure.

Long Abstract

Patients with autosomal recessive disorders, typically classified as 'rare diseases', are increasingly being sampled in Pakistan. This development has been ascribed to the growing interest in human molecular genetics in international research collaborations. However, the data created does not only serve the purpose of understanding the human genome through the disease. The international research infrastructure also facilitates the interest in understanding the disease through the human genome, by offering pre-marital and prenatal screening for Pakistani families, thus entering some of the most intimate aspects of lives lived in Pakistan. Based on interviews and participatory observation with donor families and researchers working with a project collecting genetic material on autosomal recessive disorders in Pakistan and sending it to a laboratory in Copenhagen, I investigate the different hopes, concerns and purposes attached to the data in order to arrive at an understanding of the pathways created and loops of feedback involved in the making of a new type of international research infrastructure.

Population Health Management as Social Sorting

Author: Linda Hogle (University Wisconsin-Madison)  email

Short Abstract

Accountable Care Organizations (US) are responsible both for improved health outcomes and lower costs. This paper demonstrates how Big Data tools, including predictive analytics, are being used to stratify populations to achieve both aims, reexamining STS analytical frames of classification.

Long Abstract

The term population health management has become popularized as a way to describe activities to create clinical and financial opportunities to improve health outcomes and patient engagement, while also reducing costs. This way of considering public health is consonant with the recent rise in so-called Accountable Care Organizations in the U.S., in which provider-led organizations are held accountable for both improved patient outcomes and lower costs. This shifts risk from payers to ACO providers, incentivizing them to identify "high-risk," "risking-risk" and "non-adherent" patients who are likely to be (or will likely become) high cost patients. Big data tools--specifically, predictive analytics—are increasingly employed to stratify populations into such cost groups, which can then be managed with targeted interventions. This paper analyzes the implications of the new ways of creating populations using associative data that transgress conventional ways of classifying groups. Analyzing such processes of social sorting through the lens of STS analytical perspectives of classification and standardization provides a window through which to understand contemporary phenomena in public health.

Reconfiguring individuals and populations in the post-genomic era

Authors: Sarah Cunningham-Burley (University of Edinburgh)  email
Emily Ross (University of Edinburgh)  email
Tineke Broer (University of Edinburgh)  email
Anne Kerr (University of Leeds)  email

Short Abstract

We consider how individuals and populations are (re)configured in the post-genomic era, with reference to the potential for stratified screening for cancer. The presentation will draw on existing literature and guidelines, and interviews with scientists engaged in research related to stratified screening.

Long Abstract

Cancer screening programmes are currently based on discrete risk factor(s) such as age or gender, and targeted at the level of the entire population. In the post-genomic era, there is potential to use genomic profiling in the development of stratified population-based screening, according to 'personal' assessments of risk. It is hoped this will improve the effectiveness of screening programmes, and reduce levels of unnecessary treatment. Here the identification of genetic variants associated with particular cancers is made with reference to aggregated genomic data, and used to develop individualised risk profiling. This configures new 'sub-populations' subject to targeted programmes of screening.

This presentation will draw on a review of literature on screening in the post-genomic era, and interviews with scientists engaged in research on stratified/personalised screening. The paper will explore how the objectives of public health are both challenged and reinforced by attempts to develop individual level risk profiles from population level genomics, as well as individual characteristics. Part of this will be the extension of patienthood into a period of 'pre-disease', the role of screening as a preventive and diagnostic tool, and the constructions of probable futures based on complex risk profiles. We consider how the population and the individual are constituted in scientific practice, and discuss tensions as scientific work moves between these two entities and towards the screening clinic. Beyond scientific practice, we will reflect on how the meaning of disease, and the experience of being a (pre-)patient, is becoming reconfigured in the post-genomic era.

Technologies of evidence and participation and the making of publics. Comparing two health promotion practices

Author: Klasien Horstman (Maastricht University)  email

Short Abstract

In this presentation I will explore the making of publics in public health, by comparatively analyzing an evidence based - and a community health promotion practice as articulations of different epistemic and accountability cultures.

Long Abstract

Since 1990's, following developments in medicine, public health demonstrates a trend to make public health evidence based. Statistical evidence, produced in a RCT, is considered a means to enable distinguishing between (cost) effective and ineffective interventions, and as an instrument to publicly account for public health policies and programmes. Despite critical discussions of this ideal, in public health this ideal is still very vital. In this presentation I will - based on ethnographic research - analyze two Dutch regional health promotion practices: an evidence based project to reduce coronary heart disease and a community based project to stimulate healthy living. I will show how these projects embody, articulate and construct different epistemic and accountability cultures, and different front and back offices. Based on the analysis I will discuss how these health promotion practices (un)make different publics and different relationships between policymakers, experts and citizens.

What is data good for?: Accountability in data governance and data practice in Sweden

Author: Alison Cool (University of Colorado, Boulder)  email

Short Abstract

Drawing on ethnographic fieldwork with researchers, statisticians, and data managers working with biomedical data in Sweden, this paper examines the intersections and tensions between accountability as it is invoked through data governance ideals and as it informs users’ day-to-day data practices.

Long Abstract

This paper explores accountability as an everyday concern in biomedical data practices. From a data governance perspective, accountability often entails assessing the potential of new forms of data collection and analysis to advance biomedical research, inform public health policy, and drive innovation and growth in local and national economies. The perceived potential of collecting and analyzing data is then weighed against ongoing concerns about security, privacy, and property—a complex form of accounting in which future yields are measured against current risks. Yet for data users—researchers, statisticians, and data managers—accountability takes different forms as it emerges in everyday sociotechnical calculations and interactions. While legal frameworks and formal ethical guidelines inform data users' decisions about how and why to amass and interpret data, they are by no means the only or primary means by which data users constitute themselves as accountable subjects. Ideas about efficiency and pragmatism and moral values about what counts as good science, good health, and the social good also motivate data users' day-to-day choices about what data to collect and its appropriate uses. Drawing on ethnographic fieldwork with researchers, statisticians, and data managers working with biomedical data in Sweden, this paper will examine the intersections and tensions between accountability as it is invoked through data governance ideals and as it informs users' day-to-day data practices.

This track is closed to new paper proposals.