Seed Awards in Humanities and Social Science: people we've funded
Dr Josephus Bezemer
University College London
In-hospital resuscitation under the microscope: analysing inter-professional communication using video
This project will explore the possibilities and challenges of videoing inter-professional teams working on hospital wards to resuscitate patients following a cardiac arrest.
Video recordings provide an essential data source in communication research and are commonly used in the social sciences but not yet widely applied in health research. With video, currently unverified understandings of what counts as ‘good’ communication, teamwork and leadership can be made explicit, tested empirically, and refined accordingly.
This award will bring together a strong, multidisciplinary research team to jointly develop a methodological, ethical and legal framework for the planned research. This will be achieved through a simulation-based pilot study and engagement with stakeholders.
Dr Karl Blanchet
London School of Hygiene and Tropical Medicine
Bridging the gap between community-led initiatives and humanitarian agencies to meet refugees’ health needs in Lebanon: a feasibility study
This study will explore the extent to which humanitarian agencies can build on initiatives led by refugee health professionals to pilot public health interventions for refugees in Lebanon.
The process by which displaced health professionals provide health services to refugee communities is poorly documented. Our main goals are to identify initiatives led by displaced Syrian health professionals to meet refugees’ health needs in Lebanon and determine whether identified initiatives could benefit from international support to implement public health interventions. We will conduct an ethnographic study in the Bekaa Valley, home to the majority of Syrian refugees in Lebanon, to understand the grassroots response led by Syrian health providers, along with a clearer appreciation of its structure and financing. We will also explore interactions between Syrian health providers and other agencies and organisations.
Our findings will contribute to current humanitarian debates and will be used to inform a large-scale collaborative research proposal.
Professor Michele Burman
University of Glasgow
Experiences and effects of vicarious traumatisation on those who work with troubled young women and girls: stage 1
Young women and girls in the justice system are widely considered to have experienced high levels of victimisation and trauma. As a result of close work with those who are profoundly traumatised, service providers may experience a particular process of traumatisation - vicarious traumatisation (VT).
There have been some studies of VT in therapeutic interactions in a general population, but no research on VT in relation to those working with young women and girls in the justice system.
This study aims to provide a preliminary understanding of how a process of VT may manifest in the personal and professional spheres of those working with this group, as well as seeking to understand how VT can impinge upon the efficacy of staff efforts to help their clients.
Professor Stephen Clift
Canterbury Christ Church University
Cultural engagement for wellbeing
Professor Clift aims to deepen understanding of the role of cultural engagement, as delivered by mainstream cultural organisations, in contributing to health outcomes and, in particular, to subjective wellbeing.
Evidence from outside the UK shows the positive health outcomes of engaging in mainstream cultural activities. In the UK, evidence suggests that the wealthiest and least ethnically diverse 8% of the population are the most culturally active. This raises the possibility that imbalance in the take-up of cultural activities across socioeconomic groups may contribute to current levels of health inequality in the UK.
This project will undertake a critical appraisal of the literature on the relationship between mainstream creative cultural engagement and subjective wellbeing, with the aim of developing a measure for capturing data on cultural engagement and wellbeing.
Dr Luna Dolezal
Trinity College Dublin
Shame and medicine
Shame is a common, yet poorly understood, component of the doctor-patient relationship, potentially affecting patients’ trust and health outcomes. It is a pivotal force in many aspects of patient care and in the emotional dimension of clinicians' practice. Despite its obvious importance, there has been almost no sustained or cohesive theoretical reflection on the role that shame plays within healthcare.
This research aims to shed light on the dynamics of shame in medicine through three academic workshops, and to explore the affective contexts of shame through creative arts practice and public engagement.
Professor Anne Gerritsen
University of Warwick
Therapeutic commodities: trade, transmission and the material culture of global medicine
Therapeutic commodities – goods considered valuable for health improvement – have local as well as global histories. This project aims to understand the history of therapeutic commodities by using a material culture approach. We will look at the qualities and meanings assigned to substances and the ways in which they came into being. We will view these two as mutually constitutive aspects of a material approach to medicine.
Studies of trade and the transmission of medical knowledge tend to reduce therapeutic commodities to unchanging goods that move in line with supply and demand, or characteristic features. Instead, this project seeks to bring together scholars who work on therapeutic commodities in different academic environments, to challenge existing narratives about the circulation of therapeutic commodities.
The aim is to write a new history of therapeutic commodities, mapping their global socio-political and cultural lives across time and space.
Dr Sahra Gibbon
University College London
Genetics as public health in Brazil: integrating rare genetic disease and beyond
In 2014, Brazilian legislation guaranteed, for the first time, the comprehensive integration of rare genetic disease within public health. This project will use an interdisciplinary international network to develop preliminary qualitative research that can examine how these developments are currently unfolding.
It will examine what the obstacles, as well as the expectations and benefits, are of these developments for a range of scientists, health professionals and patients.
The network will include leading geneticists and social scientists from three newly established reference centres located in comparatively diverse regions in Brazil – Porto Alegre, Salvador and Rio de Janeiro – as well as international collaborators.
Dr Julie Gottlieb
University of Sheffield
Suicide, society and crisis
This project will investigate the links between suicide and political and social crisis. We will investigate whether suicide rates increase in times of socio-political crisis and how suicide epidemics are understood as symptoms of instability.
These questions will be brought to bear on a case study of the suicide epidemic triggered by the fear of war in 1938-9 during the Munich Crisis. Together with key collaborators in the medical humanities and the cross-disciplinary field of suicidology, we will test psychological, psychiatric, sociological and historical theories about how internalisation of dramatic socio-political change affects incidents, methods and attitudes towards suicide.
Our preliminary findings will offer historical insight into recent suicide epidemics connected to post-traumatic stress disorder among veterans of the Iraq wars, the increase in suicides during the 2008 financial crisis, mental health in refugee communities, and the psychological fallout of Brexit.
Dr Janet Greenlees
Glasgow Caledonian University
Failing babies: poverty, maternity and healthcare in the 20th century
This pilot provides the first phase of a larger project on the international history of antenatal care. It will examine why poor women in the US and UK have consistently been less likely to access state and voluntary health services than their wealthier counterparts.
Bringing together historical and current maternal voices, this study will carry out archival scoping for local, state and voluntary antenatal provision in Philadelphia, Lancashire and Glasgow to provide the historical context for refining the research questions. Then a pilot methodology will be tested to add value. It will involve a collaboration with charities and clinicians to gather oral histories from small groups of low income women in Glasgow who had their babies in the late 20th or early 21st century to understand their antenatal decision-making and healthcare choices. These narratives will be compared with the historical record.
The outcomes will be shared with historical, medical and political audiences. This pilot will create a sustainable interdisciplinary scholarly network and the foundation for a larger funding bid.
Dr Marsha Henry
London School of Economics and Political Science
Gender, structures and social wellbeing: a socio-legal exploration of conflict-related gender-based violence in Bosnia Herzegovina and Liberia
This research seeks to investigate the cultural and social contexts of health and social wellbeing for survivors of conflict-related gender-based violence (CRGBV) in Bosnia and Herzegovina, and Liberia. In particular, the study examines the influence of gender norms and structural forms of inequality on women’s engagement with civil society organisations and legal institutions focused on psycho-social and legal support for female victims.
The research will be carried out through interviews with key workers in civil society organisations and legal institutions responsible for post-conflict assistance and rehabilitation, justice, reconciliation and reparations for survivors of CRGBV.
This pilot study will investigate, with a non-clinical focus, the state of social wellbeing among survivors and map some of the post-conflict challenges.
Dr Amy Hinterberger
University of Warwick
Blood and tissue samples as ‘human subjects’
This project examines transformations in the definition of the human research subject in biomedical research. On 8 September 2015, the USA announced an overhaul for research regulations: the expansion of the definition of ‘human subject’ to include biospecimens (ie blood and tissue samples). This change points towards the increasing importance of biospecimens in health research, along with their politicisation.
In addition, advisory bodies have issued guidance on the ‘humanisation’ of other life forms brought about by the increasing use of human biological material in other animals (eg human ‘admixed embryos’ in the UK and the US moratorium for animals containing human cells in early development).
This project investigates such new and changing understandings of the human subject in biomedical research through a qualitative based pilot study in the USA and Germany.
Dr Sarah Hodges
University of Warwick
What’s at stake in the fake? A contemporary cultural history of fake drugs and India
Preliminary investigations suggest the global anti-counterfeiting movement’s regular claims about India’s role as a major producer of fake drugs are poorly aligned with observable evidence. If accurate, these findings suggest that practical measures to strengthen access to safe medicines – for the world’s rich and poor – need urgent rethinking. In order to test initial findings, I will carry out further research into the nature of India’s pharma sector since the 1970s, with particular attention to its role as the generic drugs manufacturer for the global South. Materials will be gathered from official and unofficial published archives as well as from interviews in India with those who write policy, drugs manufacturers, pharmacists, physicians and medical representatives.
Global health scholars have already noted India’s generics in anti-counterfeiting activities. India’s reputation in fake drug manufacturing, however, has gone largely unquestioned. Findings will be published and aired at the National Bioethics Conference in India and a bespoke international medical humanities workshop.
Professor Julian Hughes
Art, authenticity and citizenship in care homes
The intellectual focus of this project will be on the notions of authenticity and citizenship in the context of care homes. Both authenticity (the extent to which the person can be true to his or herself) and citizenship (the extent to which the person participates in his or her community) come under threat in care homes.
Using qualitative ethnographic methods, this study will probe how authenticity and citizenship might be maintained or enhanced by an art intervention. It will consider how authenticity and citizenship are demonstrated and factors that might contribute to their realisation.
Dr Angeliki Kerasidou
University of Oxford
Towards the development of a healthcare ethics of austerity: frontline healthcare professionals’ experiences of austerity-driven policies in the UK
Since the global financial crisis and the UK government’s self-imposed austerity programme, there has been a growing body of literature demonstrating the socio-economic consequences of austerity-driven policies and their impact on healthcare provision. Less attention has been given to the ethical implications of these policies on the practice of frontline healthcare professionals.
For this project, Dr Kerasidou will use an interdisciplinary approach to answer the question: in what ways have austerity measures and reforms affected the everyday ethical decision-making and experiences of frontline healthcare professionals in NHS? Her aims are to describe experiences of caring for patients in conditions of austerity, and examine, through philosophical analysis, the perspectives and ethical issues experienced by frontline healthcare professionals.
Dr Ciara Kierans
University of Liverpool
The social formation of a medical enigma: an ethnographic pilot study of chronic kidney disease of unknown origin in Mexico
In Central America and parts of Mexico, there has been an unexplained increase and change in the aetiological profile of chronic kidney disease – a transformation repeatedly described as a ‘medical enigma’. Classified as chronic kidney disease of unknown origin (CKDu), the condition cannot be attributed to conventional causes. Instead, it has been linked to particular groups, such as young men, working in the agri-industries, mining, fishing and tanneries, often in sites of environmental concern.
This project aims to examine how knowledge of a ‘medical enigma’ is produced, to conduct an ethnographic scoping study and to generate an interdisciplinary research network. These objectives will provide the basis for further research in other Central American countries based on the lessons learned in the pilot.
Dr Steph Lawler
University of York
Connecting wounds: non-suicidal self-injury in the context of social relations
Self-harm is a significant contemporary expression of personal distress and social estrangement, and is an issue of major social concern. The evidence for this is its increasing prevalence and its recognition in the DSM 5 (2013) as a distinct category of mental disorder in need of further study.
This project examines the topic of non-suicidal self-injury (NSSI) in social context, using sociological methods and perspectives. The aim is to develop knowledge in this area by providing insight into how social relationships shape, and are shaped by, the practices and experiences of NSSI. The project’s vital innovation will be to research not only those who do or have self-injured, but also those who have or have held close relationships with people who self-injure.
Dr Vicky Long
Glasgow Caledonian University
Decision making in pregnancy after 1970
Parents’ decision making in pregnancy in Britain has been transformed over the past 45 years by the development of prenatal screening methods and invasive and non-invasive diagnostic technologies. These screening and diagnostic tests, which provide information about fetal genetic abnormalities, neural tube defects, other structural anomalies, and fetal gender, have been analysed by sociologists, anthropologists and bioethicists.
This pilot study will construct an application for the first large-scale historical analysis of the socio-cultural context of prenatal screening and diagnostic technologies and their impact upon women and their partners. It will do this by undertaking a rigorous literature review and scoping potential sources. We will have workshops with academics and stakeholders from medicine and the voluntary sector to inform the project’s approach and identify collaboration and engagement opportunities. We will then design and secure ethical approval for the methodology for the project which will enable women’s voices to be heard.
Dr Jeroen Luyten
London School of Economics and Political Science
The capabilities approach as ethical foundation for a cognition policy based on a metric of 'cognitive footprint'
Cognition (the set of all mental abilities) is quintessential to human functioning and is one of society’s most valuable assets. However, unlike physical health, disability, economic growth or happiness, it has never become a focal point of public policy.
The case has been made for a cognition policy and a metric for policy evaluation, a ‘cognitive footprint’. This project will investigate the ethical basis of such a cognition metric for policy evaluation purposes.
A starting point is Sen’s ‘capabilities approach’ to the goals and limitations of public policy, which defines real human wellbeing in terms of development and flourishing rather than wealth or happiness. This framework has become influential in many domains of health and social care, and offers a basis on which to explore the contours of an ethical cognition policy.
Dr Jennie Middleton
University of Oxford
Urban austerity, care, and new parenting
There is evidence that austerity-driven cuts have disproportionately affected low-income, single-parent families, and people with disabilities. Far less attention has been paid to first-time parents. New parents are often heavily dependent on, and benefit from, pre- and post-natal forms of care.
This project is the first stage of research that will provide comprehensive evidence for understanding the complexity of contemporary parenting care practices in the context of urban austerity. Building new interdisciplinary research at the intersection of human geography and social psychology, Dr Middleton aims to make fundamental contributions to advancing understanding of the physical and mental wellbeing of new parents.
Professor Stuart Murray
University of Leeds
Augmenting the body: disability, care and the post-human
Body augmentation takes many forms, from personal adaptation to rehabilitation for people with disabilities. It can involve physical, cognitive, philosophical and technological changes. It also questions the constitution of norms and the status and viability of the body.
Our aim is to develop a cross-disciplinary research approach to ideas of augmentation, noting how they reflect and are influenced by cultural narratives about robots and a post-human space ‘beyond’ conventional apprehensions of the body and selfhood.
We will use a broad understanding of augmentation, including ideas of care and psychological wellbeing as well as questions relating to technology and the cyborg/biohybrid body, and will focus on both physical and cognitive augmentation while exploring the interaction of the human and non-human. Ultimately, our project seeks to change the ways in which the experience of disability is represented and understood.
Professor Tim Parkin
University of Manchester
Sexual health in antiquity – evidence, influence, identity
Sexual health is a topic of global concern. But open awareness of, and debate around, topics like contraception and sexually transmitted diseases can be seen as a relatively new phenomenon. This project will widen and enrich our understanding of sexual health by looking back to the ancient world to consider attitudes and practices before the modern era.
Through three workshops, researchers from literary, historical and archaeological disciplines will build upon and link together existing work on sexuality and health in ancient Greece and Rome. This will help to bridge the gap between sexual health in the ancient world and more recent times.
Dr Effie Photos-Jones
Greco-Roman medicinal minerals
The pigment medicines discussed by Pliny and other authors of the Greco-Roman world have been under-researched compared to their botanical counterparts. This project will investigate two medicine boxes containing minerals from burials in northern Greece during the Hellenistic–Roman periods. It will also synthesise and test ‘ancient medicinals’ using samples from the volcanic landscapes of the Aegean and Tyrrhenian Seas, and following prescriptions found in Scribonius Largus in 1st century AD.
By combining mineralogy and microbiology, the research will ascertain the potential presence of microorganisms associated with the geological samples, and establish whether it is such microorganisms that give the archaeological materials in prescriptions their medicinal properties.
Professor Sita Popat
University of Leeds
Identity and governance of bodily extensions: the case of prosthetics and avatars
Prosthetics and avatars can both be defined as forms of bodily extension – one mechanical, the other digital. Both are used widely in everyday life, yet research into their impact upon users’ lived experiences has been approached with different emphases. Medical research into prosthetic limbs has tended to focus on functionality, while research into avatar usage has tended to focus on embodiment, social identity, interaction, legal ownership and rights. This project brings together researchers from rehabilitation medicine, law, digital performance and media to apply multiple perspectives to prosthetic and avatar bodily extensions.
Professor Popat aims to answer three key questions. How do different forms of bodily extension impact on experiences of embodiment and being in the world? How do body image and social identity relate to the design and function of bodily extensions? How far are bodily extensions defined and acknowledged medically, in information technology and in human rights law?
Dr Olwen Purdue
Queen's University Belfast
Heritage Connects: history, community and public health
This project addresses heritage, a seldom-explored dimension of social capital, and how it affects wellbeing in urban areas.
Taking east Belfast as a case study, where levels of social capital and social cohesion have historically been low and health inequalities high, the research will investigate the role of heritage in individuals’ wellbeing and health. It will employ a mixture of quantitative and qualitative surveys, focus groups and public engagement activities with the communities living near two historic parks in east Belfast.
Professor Muireann Quigley
The everyday cyborg: mapping legal, ethical and conceptual challenges
Everyday cyborgs are all around us. They are people with replacements and augmentations ranging from artificial joint replacements, implanted devices such as pacemakers and the total artificial heart to limb prostheses. Linking the organic, biological person with synthetic, inorganic parts and devices raises novel questions for the law. Answering these questions satisfactorily requires a re-analysis of the conceptual and ethical terrain underpinning the law, as well as the law itself.
This project will lay the groundwork for this by identifying, mapping, and beginning to explore the novel legal, ethical, and conceptual challenges posed by implantable and prosthetic technologies.
Professor Sasha Roseneil
University of Essex
The practice, politics and provision of the talking therapies in England since the 1960s: a scoping study
This scoping study will act as a precursor to the first major study of the talking therapies, often referred to as the ‘supply side’ of psychotherapy, psychoanalysis, group analysis and counselling. It aims to address the practice, politics and provision of the talking therapies, and the working lives and motivations of the practitioners and policymakers who have shaped the field.
The goals are to refine the preliminary design and scope of the study through a series of workshops and interviews, literature reviews, international scoping visits, and the development of a public engagement strategy.
Professor Teela Sanders
University of Leicester
Reviewing the occupational risks of sex workers in comparison to other ‘risky’ professions: mental ill-health, violence and murder
By bringing together social scientists, epidemiologists and health practitioners, Dr Sanders aims to understand how occupational health and safety differs between sex workers and other professions established as ‘risky’.
Data on the occupational risks of sex workers (female, male and transgender) across street and indoor workplaces will be compared to data from other ‘risky’ professions by focusing on three key areas: mental ill health, violence and murder. Analysis of routine data gathered by research partners National Ugly Mugs will contribute to a greater understanding of violence committed against sex workers in the UK. This knowledge should expand understanding of the role of the workplace in shaping and protecting against risk, and the capacity to develop policies and practices that address the specific occupational health inequalities faced by sex workers.
Professor Ulf Schmidt
University of Kent
Cold War bioethics: human research ethics in Central and Eastern Europe, 1945-present
The foundations of the post-World War II field of bioethics lie to a great extent in human research ethics and the Nuremberg Code. The modern institutions of bioethics are dominated by a Western perspective that focuses on respect for autonomy and informed consent. A focus on the opposing ideological, social and cultural systems in Central and Eastern Europe opens up dramatically new perspectives.
Building on extensive previous work, and through innovative use of source material, this project will reconceptualise customary notions about the nature and limits of bioethics.
Dr Lisa-Marie Shillito
‘Biofuels’ and respiratory health – the potential of the archaeological record
Biofuels have been seen as sustainable alternatives to burning fossil fuels. However, the use of silica-rich renewables can have detrimental effects on urban air quality and respiratory health. We will explore this tension by applying modern air quality modelling to an archaeological settlement, where previous research shows a significant shift in fuels used over 1,000 years, alongside decreasing settlement density.
We will enhance our understanding of the long-term relationship between ‘biofuel’ burning, settlement density, and respiratory health. We will also look at public understanding of the detrimental effects of these fuels, which are considered ‘cleaner’ than fossil fuels. The nature of the archaeological record enables a long-term perspective and can be used as a tool for communicating health issues to communities at risk.
The key goals are to establish a network of interdisciplinary collaborators from archaeology, civil engineering and modern environmental health research, and conduct feasibility studies to support an application for a larger award.
Dr Dora Vargha
University of Exeter
Socialist medicine: an alternative global health history
This project will investigate the role of socialism as concept and socialist internationalism as practice in shaping global health history, focusing on the Cold War era. I will investigate socialism and socialist internationalism simultaneously from within and from without. I will track how ideas of public health and medicine circulated among socialist countries and welfare states, which practices and concepts were adopted and how local solutions fed back to the overall idea of health in national and international contexts. I will also explore how socialist medicine engaged with Western and non-aligned health systems and global health programmes.
The project will provide a significantly new perspective on histories of global health. My key goals are to conduct archival scoping on four continents to identify research questions, concepts and methods through workshops and create a network of research assistants, experts and scholars in key research sites and develop an academic network in which the project can be embedded and an advisory board established.
Dr Niki Vermeulen
University of Edinburgh
Following the life of a research institute: a biography of the Francis Crick
Dr Vermeulen will study the birth of the Francis Crick Institute and its new research strategy of ‘discovery without boundaries’. At 9,300m² and a cost of £700 million, the Francis Crick institute has international prominence and is unique in its availability of British scholars analysing knowledge creation and translation. The Crick has provoked debate about whether its size constitutes progress or uproots current practice.
This project will explore this by looking at the ways in which the institute provides new opportunities for interdisciplinary knowledge creation. It will map the spatial design and initial functioning of the Crick, and organise a multidisciplinary workshop to design the first longitudinal and reflexive study of a biomedical institute.
Dr Benjamin White
University of Glasgow
Humans and animals in refugee camps
Refugee camps have been a durable part of the political landscape for a century, and animals – livestock, pack animals, pets or pests – have been a constant and often vital presence in them, but research on their role in camp life is lacking.
This project explores the roles animals have played in refugee camps. Our goals are to establish a cross-disciplinary academic/practitioner research network, to set out and disseminate a research agenda, identify appropriate methodologies and develop a collaborative funding bid to pursue that research. We will hold three cross-disciplinary academic/practitioner workshops, plus six smaller meetings with a group of people who have lived in refugee camps. We will produce a feature in the leading publication on forced migration, a working paper for UNHCR (The UN Refugee Agency), blog posts, and applications for follow-on funding. The project will establish effective knowledge exchange partnerships to inform humanitarian practice and improve the lives of refugees and their animals.
Dr Patrick Zuk
Representations of trauma in the modernist musical artwork
This project represents the first significant attempt to link musicology with the interdisciplinary field of trauma studies. It focuses on the ways in which the lives and work of Soviet composers were shaped by their experiences of war, revolution, genocide, and living under a suppressive totalitarian regime. These are topics of key importance, but they have yet to be investigated more comprehensively.
The project will culminate in a conference exploring wider questions about the links between music and trauma. The findings will inform a larger collaborative programme of research investigating the centrality of trauma for understanding musical creativity in the modernist era.
2016 themed callSocial media and health: meeting the ethical challenge
Dr Emma Boyland
University of Liverpool
Social media food marketing to teenagers: tackling the ethical and methodological challenges of behavioural tracking for public health research
Unhealthy food marketing detrimentally affects food preference, choice and intake in young people. Advertising on television has become increasingly regulated in recent years, but equivalent policy progress for social media marketing is impeded by a lack of understanding of the nature and impact of advertising on these platforms.
Researcher access to behaviourally targeted, personalised digital marketing data is critical to inform regulatory action, but is methodologically challenging with major ethical implications. This project will identify and evaluate potential methodological solutions to the ethical challenge of understanding the prevalence, nature and impact of personalised unhealthy food marketing to adolescents through social media.
The project will conduct focus groups with teenagers and parents to explore engagement with social media food marketing, and bring together experts and researchers from diverse disciplines for consultation.
Dr Annamaria Carusi
University of Sheffield
Crowdsourcing for health: scientists and patients reconfiguring trials and regulatory practices
Crowdsourcing is reshaping key gatekeeping mechanisms in healthcare such as regulatory tests and clinical trials. Digital technology means that information and knowledge can be shared more broadly within communities of scientists and patients, yet it also means that established quality filters may be bypassed.
By comparing pilot studies of science communities crowdsourcing information for regulatory tests to patient-led clinical trials, this study aims to understand how digital technologies incorporate and transform various concerns of scientist and patient communities, and how equitable, safe and sustainable crowdsourcing practices can be promoted.
The project focuses on the inter-relationship between epistemic, social, pragmatic and ethical drivers in the distribution and assessment of information, the integrity of research, and the social acceptance of new modes of knowledge gatekeeping by scientists and patients.
Dr Sarah Chan
University of Edinburgh
Patienthood and participation in the digital era
Digital tools for data collection and analysis have prompted a shift in the nature of biomedical research and participation. Research modes such as biobanking, genetic epidemiology and population health data research continuously position individuals simultaneously as both patients and participants.
By developing interdisciplinary medical humanities and social science approaches, this project will examine the changing nature of patienthood and participation in the digital era, and its effects on health-related research, innovation and healthcare delivery.
It will develop novel ethical and conceptual frameworks for theorising participation in the context of social media, and investigate how social media can be used to address future health challenges, by enabling participation and providing wider access to information.
Dr Victoria Goodyear
University of Birmingham
Social media and its impact on adolescent health and wellbeing: a scoping study of the new ethical challenges
This scoping study focuses on the impact of social media on adolescents’ health-related knowledge and behaviours. Currently, there is limited evidence-based guidance addressing the significant risks and ethical concerns posed by adolescents’ use of social media to inform their understandings of health and wellbeing. Evidence suggests that the prevalence of youth body-image concerns can be exacerbated by access to unsolicited and unmediated health-related information.
This study aims to: identify what health-related information is accessed from social media and how it influences adolescents’ health and wellbeing; establish a network of researchers, policy makers, schools, teachers and parents to develop a collaborative research agenda focussed on social media and the health and youth wellbeing; construct evidence-based actions and guidance to mitigate against risks or harms posed by adolescents’ uses of social media in the context of their health and wellbeing.
Dr Ciara Heavin
University College Cork
Consenting Health related data through Social Media (CHASM Project)
Social media platforms (SMPs) are designed in a way which may hinder users from fully understanding the consent process for their personal health data to be used as part of research. The current visualisation of the consent process on mobile devices is very restrictive due to screen size and the amount of text visually presented to the user.
This project will explore a new approach to visually presenting the consent process to patients on SMPs. The study aims to understand the current design process of SMPs for obtaining consent from users, to obtain users’ perceptions on providing consent based on the current design and identifying new design criteria for the consent process.
The criteria identified by the research could be used by medical or clinical health researchers when obtaining informed consent electronically outside of SMPs.
Dr Tristan Henderson
University of St Andrews
Towards contextual consent in social media health research
Social media has become an attractive data source for researchers, but its use also raises many ethical questions.
This project will investigate whether it is possible to predict when social media users consent to having their data used for health research. To enable more meaningful informed consent, Dr Henderson will explore whether it is possible to use Nissenbaum’s contextual integrity to detect informational norms for the use of social media data and to predict consent for use.
The goals of the project are two pilot studies looking at users of health support networks, collecting a large body of social media data, determining informational norms from the data, and applying contextual integrity to predict which data can be shared with whom. Focus groups and workshops with social media users and practitioners will help build on the algorithms developed in these pilot studies.
Dr Anna Lavis
University of Birmingham
Virtual scars: exploring the ethics of care on social media through interactions around self-injury
Research has illustrated that cyberspace comprises enactments of care for, and about, self and others, albeit ambivalent. Yet there has not been a comprehensive interrogation or theorising of the forms such caring takes, the ethical challenges it poses, or its potential relevance to clinical practice.
Drawing on the anthropology of ethics, and cross-disciplinary analyses of care, this research will address this lack through an online ethnography of self-injury. Self-injury blurs neat care/harm distinctions, with individuals describing it as a practice of survival. It is also the focus of myriad cyber-discussions, spaces and hashtags.
Self-injury, therefore, offers a key critical lens through which to approach the complexities and ethical uncertainties of what it means 'to care' on, and through, social media. This will set in motion a programme of activities to explore more widely intersections of health, care and social media, inviting discussions of other empirical, socio-cultural and political contexts, and their ethical challenges.
Dr Robert Meadows
University of Surrey
Social media and sleep: ethical agendas in the digital age
Sleep is a moral matter, from longstanding proverbs of the ‘early to bed, early to rise …’ kind to contemporary ideas of ‘sleep enhancement’. Developments in digital and social media, which range from the use of #sleepjunkies and wearable sleep monitoring and sharing technologies - add further important dimensions to our relationship with sleep.
These developments have the potential to transform how we ‘know’ good and bad sleep, and may come to be embedded within new standards on how to become a better, more successful or more productive sleeper.
This project examines the multitude of ethical challenges raised by the digital culture that has developed around sleep. It probes how these challenges are embodied, embedded and enacted (or not) within the everyday worlds of owners, designers, clinicians, experts and users, sharers, non-users and prospective users – all of whom may ‘value’ sleep differently.
Dr Gabrielle Samuel
Social media approaches to health research: an empirical analysis of decision-making within the ethical landscape
At present no overarching international picture exists of ethical guidance practices for health-based university research incorporating social media approaches (HRSM). While some institutions have produced general ethical guidance for internet-based research, little direct research exists on how, or even if, different disciplines and scholars should navigate this guidance, or how ethical decisions are managed if no guidance is available.
This project will explore the international ethical guidance landscape of HRSM and provide a detailed comparative analysis of research ethics committees’ and scholars’ views about the ethics of HRSM across different disciplines, research approaches, experience levels of using HRSM and institutional ethical guidelines.
Dr Clare Barker
University of Leeds
Genetics and biocolonialism in contemporary literature and film
Dr Barker will explore how genetic research on vulnerable and isolated populations has been represented in global literature and film. Genetic research on these populations has led to the medical sciences and the pharmaceutical industry being framed as agents of ‘biocolonialism’.
Using postcolonial critical methodologies to investigate creative depictions of genetics, Dr Barker will focus on work by indigenous, postcolonial, and minority writers. This project will explore: how indigenous writers and filmmakers have responded to human genetic research in their communities; the bioprospecting of plant resources for pharmaceutical use; and how the bioethical dilemmas facing doctors and scientists are negotiated in fiction and film. These strands will present a fuller picture of the cultural, political and ethical aspects of genetic research, and how literature and film can be used to help develop culturally sensitive research practices.
Dr Brenna Bhandar, Ms Vinita Gatne and Mr Ranjit Kandalgaonkar
School of Oriental and African Studies and Tata Institute of Social Sciences
The architecture of public health trusts in colonial Bombay
Throughout the 19th century, thousands of charitable trusts for the provision of public health were established and built in the city of Bombay. Using a combination of archival research and workshop discussions with people drawn from medicine, anthropology, architecture and visual arts, the project seeks to answer four questions.
How did communities take proactive steps to establish and run trusts outside of the government within informal networks? How was public health facilitated through the trust, and how was it used to meet the basic needs of communities for human welfare, the provision of sanitation, and sanctuaries for those afflicted with diseases such as TB and leprosy? What role did trusts for health provision play in the urban development of Bombay? Finally, how might visual artists represent the historical development of these trusts to engage Mumbai’s public on the topic of community-run health provision?
Dr Marco Boeri
Queen’s University Belfast
Exploring antimicrobial resistance from a societal viewpoint: tools from welfare economics and preference analysis
The development of antibiotics has added an average of 20 years to our lives. However, the rise of antimicrobial resistance (AMR) is threatening to make them ineffective, posing significant risks and costs to society. Natural scientists are discussing and searching for solutions for AMR from many viewpoints, but seldom has the perspective of social scientists and that of citizens been explored with a view to enabling their full participation in solving it (e.g. by reducing misuse of antibiotics).
With this in mind, the basic idea of this project is to address AMR with the tools developed in environmental economics that have been brought to bear on problems such as pollution or climate change. Indeed the growing presence of antibiotics in the environment, which might worsen the AMR problem, can be considered a by-product of human activity (mainly from agri-food and health sectors). It is therefore possible to apply techniques from environmental economics, such as non-market valuation and preference analysis, to study the problem in terms of costs and benefits for society. Once the preferences of citizens to control AMR have been estimated, it will be possible to explore how tools from social marketing can be used to encourage the awareness and participation of the general public on this matter.
Dr Clare Chandler
London School of Hygiene & Tropical Medicine
The fight against antimicrobial resistance: applying theory to practice
Antimicrobial resistance (AMR) is one of the greatest threats to life as we know it. Either through dramatic policy change and intense programming, or conversely through inaction, it is set to reconfigure our relationship with medicines and have a profound impact on the possibilities for care and health around the globe. Governments and global agencies recognise this, and priorities in responding to AMR are currently being consolidated within and between nations. Yet, there is a surprising lack of input from the social sciences in the development of these policies.
This project will bring social science theory to bear on AMR to catalyse alternative ways of conceptualising medicine, care and the consequences of (in)action. Relevant thinking from the social sciences’ considerable work on medicine use and global health will help when reviewing current policy and conducting pilot interviews with key actors in the AMR policy process at the global level. This will then inform a research proposal for empirical work in a large, multi-sited programme of ethnographic study of antimicrobial resistance at global, national and local levels.
Dr Sophie Churchill
The Corpse Project
The Corpse Project: phase I
The Corpse Project aims to improve options for the body after death, through multidisciplinary research and public engagement. Current burial and cremation practices are, generally, poor versions of ancient customs and fail to return the body to the natural cycle. The environmental implications of current and alternative practice are under-researched and poorly understood. This matters, given threats to soil health and pressures upon wider ecosystems. The UK seems particularly affected by a loss of rituals around, and acceptance of, the dead body, which have historically provided a way to mourn, and to be reconciled to death.
The Corpse Project will aim to establish whether human and ecological well-being can benefit from a more open and informed consideration of the corpse, through investigating public knowledge and attitudes to the treatment of the corpse and reviewing current literature and policy.
Dr Helen Curry
University of Cambridge
Seeds for survival: a global history of seed banking
This Seed Award will act as a launch pad for a major multi-year, multi-researcher project on the history of seed banking as a global conservation practice, which is largely uncharted and highly complex. It will seek to understand: how the genetic diversity of plant species came to be seen as a critical but imperilled resource essential to human survival; how see banks came to be seen as the obvious solution to the threat of losing such diversity; and the consequences of these ideas – and the institutions and activities they inspired for global food security and human wellbeing in the present.
This project will allow for the identification of the relevant archival resources and living individuals who might be future sources of oral histories, scoping of archival materials, and a workshop to bring relevant expertise to, and generate a research network around this topic.
Dr Catherine Dodds
London School of Hygiene & Tropical Medicine
From treatment possibilities to treatment as prevention: HIV and biomedicalisation in UK qualitative datasets
This project will examine how the lived experience alongside HIV anti-retroviral medications (ARVs) has changed over time; the extent to which identities have been shaped by the increasing biomedicalisation of HIV; and the extent to which social and structural inequalities have impacted on or been reinforced by these developments, through the preparation of 15 UK qualitative datasets for secondary analysis. This work will help develop a social science research agenda that is fully engaged with this changing HIV landscape, positioning social scientists again as critical friends supporting decision-makers and implementers.
Dr Deirdre Duffy
Edge Hill University
The Liverpool-Ireland abortion corridor: history, activism and medical practice
Liverpool occupies an important position in the story of abortion in Ireland. Since the 1970s activist groups in Liverpool have offered accommodation and other support to women travelling from Ireland seeking abortions and Liverpool Women’s Hospital is the only health provider directly referenced in political debates on Irish women’s right to abortion. However, little is known about the ‘Liverpool perspective’ on this matter. Questions remain over what Irish women travelling to Liverpool experience, how they are supported, and their impact on health provision in the city. As a result, the full ramifications of the ‘abortion traffic’ created by the legal restrictions in Northern and Southern Ireland are unclear.
This project seeks to address this gap in knowledge. Bringing together historical, sociological and clinical perspectives, it begins a discussion of the Liverpool-Ireland Abortion Corridor (LIAC) as a socio-cultural phenomenon with implications for clinical practice. This project will consist of a small scoping study of the LIAC and four symposia (in Liverpool, Dublin and Belfast), allowing for the establishment of an international, cross-disciplinary network and the initiation of a larger exploration of the historical, medical, socio-spatial, cultural, legal and political contours of the LIAC.
Dr Mhairi Gibson
Measuring ‘harmful cultural practices’ using randomised response techniques: female genital cutting in Africa
Our goal is to develop new techniques to measure the scale and predictors of harmful cultural practices (HSPs) in low-income settings. These will transform understandings of why practices persist despite long-standing eradication efforts. The focus is on female genital cutting (FGC) in an Ethiopian population where rates (and risks to health) are high, and publicly-expressed views imply change in attitudes and practice. Characterising the extent of HCPs such as FGC is difficult as respondents may understate their practice/preferences (e.g. due to illegality) or overstate them (e.g. due to social pressures). Random response techniques (RRTs) are a powerful tool to elicit true responses to sensitive questions and identify variation in response biases. To date, these techniques have been under-applied to public health questions, and low-income settings.
We will develop innovative RRT infrastructure to investigate HCPs in Africa, to demonstrate the utility of such methods, and to establish a network of collaborating universities, policy-makers and NGOs. The work will enable a major research bid concerning multiple HCPs from sites across Africa, identifying individuals at greatest risk, and the social drivers of behavioural change.
Dr Anna Greenwood
University of Nottingham
Boots and the colonial world: imperial networks and the business of empire, 1919–1960
This pilot is the first phase of a larger project examining the international history of Boots. The project will undertake a rare scholarly investigation of the Walgreens Boots Alliances (WBA) archive to produce a timeline mapping its international retail, wholesale, drug research and pharmaceutical production activities, with a focus on Boots international relationships during the colonial period and within British colonial dependencies. This will allow for the establishment of a sustainable interdisciplinary scholarly network as the basis for a larger funding bid provisionally entitled ‘Chemist to the Nation, Pharmacy to the World: the International History of Boots’.
Dr Kate Hampshire
Trust, risk and uncertainty in medicinal transactions in sub-Saharan Africa
Medicines are at the centre of a major global public health crisis. Widespread counterfeiting and unprecedented global traffic of pharmaceuticals have created significant trust problems for patients and others, particularly where regulation is weak, with serious risks for individual and public health. We propose to develop a robust analytical framework to understand the mechanisms that foster the production of trust in medicinal transactions in sub-Saharan Africa. Our question is: how, under conditions of uncertainty and informational asymmetry, do actors (consumers and providers) come to trust and distrust particular medicines, and how does this shape practice?
Our goal is to bring together the richness of ethnographic enquiry with the powerful analytical approaches offered by Behavioural Game Theory in order to address this pressing global public health problem. This Seed Award will be used to conduct a pilot and feasibility study in Ghana and Tanzania; collect preliminary data to underpin theoretical and methodological development; build/consolidate international academic and stakeholder partnerships; and develop local research capacity. This is particularly important given the theoretically-novel and ambitious nature of the proposed larger study which will be submitted for a Wellcome Collaborative Award, and the new international, interdisciplinary research consortium we are building.
Dr Richard Huxtable
Balancing Best Interests in Medical Ethics and Law (BABEL)
This project asks: How are the best interests of incapacitated patients interpreted and appliced in judicial decision-making? The aim is to establish whether or to what extent bioethical understandings of best interests are captured in law, and vice versa. This will involve exploring the (bio)ethical values associated with the best interests standard and the values captured in judge’s use(s) of this standard and the weighting(s) these acquire in the judicial balancing exercise.
The project examines decisions to treat a range of incapacitated patients, focusing on particular areas of bioethical controversy (eg sterilisation, vaccination, dementia care, and the withdrawal of life-sustaining treatment). In addition to combined legal and bioethical analysis, which will be published, the project will prepare the way for a programme of research on best interests, by supporting networking and the preparation of bids. The programme will ask: how should the best interests of incapacitated patients be interpreted and applied in medico-legal decision-making? The programme will utilise integrated empirical bioethics methodologies and thus encompass documentary analysis, normative arguments and empirical enquiry.
Professor Sabina Lee
University of Birmingham
Life courses of Vietnamese GI-children: a comparative pilot study of three cohorts using SenseMaker and Cognitive Edge methodology
Evidence suggests that children born of war (CBOW), ie children fathered by foreign soldiers and born to local mothers, have been and still are difficult to integrate into post-conflict societies. Furthermore, evidence indicates that the life courses of those who are visibly connected with a (former) enemy, in particular children of biracial provenance, suffer disproportionate economic, social and health-related disadvantages due to their biological origins.
The proposed study will compare three distinct cohorts fathered by American soldiers during the Vietnam War; a relatively age-homogeneous group which, as a result of political decisions and personal circumstances had different life courses. These three groups include: a) individuals who were evacuated to the US in 1975 as very young children during Operation Babylift (around 3,000); b) individuals who settled in the US as teenagers in the aftermath of the American Homecoming Act of 1987 (around 25,000); and c) Vietnamericans who remained in Vietnam (number unknown). The chosen methodology, SenseMaker/Cognitive Edge, employs micronarratives to test the relative significance of identity, stigma/discrimination and childhood adversities for life course developments, with particular emphasis on mental and physical health.
Dr Louis Lilywhite
Healthcare anatomy of conflict
This project aims to create a consortium of institutions and countries, involved in the development of a research protocol, implementation plan and grant application, to map the populations’ views and experience of healthcare during the various phases of conflict and recovering, including the carriers there, those responsible for them and their perceived effects. Sources of health and healthcare include peers, traditional healers and non-state armed groups and conventional providers (State, NGOs, IGOs, etc). The research will complement work being undertaken on the relationship between Non State Armed Groups and health and healthcare, and a research protocol that has been developed to explore the motivation, and perceived successes and failures of decision makers during conflict and transition to peace.
The project developed with this grant will enable a comparison between policies at national level with experience on the ground. The project will influence policy through gaining the populations’ understanding and views of the humanitarian principles of neutrality and independence; on interventions designed to win ‘hearts and minds’; and their perception of providers and healthcare workers.
Professor Anneke Lucassen
University of Southampton
Additional findings and whole genome-sequencing: patient, family members and health professional perspectives
Whole genome-sequencing (WGS) is being offered to NHS patients with rare diseases as part of the 100,000 genomes project – a hybrid clinical research venture. Clinical interpretation of sequence variants is improved by comparison with parental samples, so these will be analysed at the same time wherever possible. In WGS, clinical interpretation of sequence variants is improved by comparison with parental samples, so these are analysed at the same time wherever possible. Diagnosing the presenting disease is the primary aim of this work, but parents are also offered separate tests that predict other, possibly unexpected, conditions such as cancers/heart disease, or risks to future children. The results from some of these additional findings are only disclosed if both parents are carriers of the same condition (couple results) since it is only then that future pregnancies would be at risk. These are all new practices for the NHS, and the practical and ethical issues they raise need scrutinising urgently.
This project aims to sow the seeds for a Wellcome Collaborative Award by capitalising on an early cohort of patients recruited to the 100,000 genomes project to identify research questions and methodology for the larger project.
Dr Joao Nunes
University of York
Community health workers in Brazil and the global movement for universal health coverage
Universal health coverage is one of the greatest unfulfilled ambitions in global health. The proposed project explores the role played by community health workers (CHWs) in efforts to realise this elusive goal, focusing in particular on the case of Brazil. CHWs have been invoked amongst global policymakers as a unique mechanism for the improvement of health systems, enhancing equity by bringing services to those previously excluded while also enhancing democracy by mediating marginalised groups’ perspectives through to decision-making processes. In recent years, Brazil has provided a model that has been turned to by national and international policymakers to guide health system reform in middle-income and emerging states, and as such represents a case in need of further systematic study.
This political science-centred and historically-rooted project develops an innovative approach to this crucial, and largely overlooked, aspect of universal coverage. It draws on new archival material and extensive fieldwork in Brazil to explore the evolving role of CHWs from 1950 to the present day, generating insights into the patterns of success and failure surrounding their work. The project also investigates changing visual representations of CHWs through film and photography, shedding light on the assumptions and cultural meanings attached to their role.
Dr Marie Polle
University of Westminster
Investigating the provision and conceptualisation of social prescribing approaches to health creation
Social prescribing (SP) is a mechanism for linking patients in primary care with non-medical sources of support within the community, e.g. providing arts based activities instead of prescribing anti-depressants for patients with depression. Innovating approaches to reduce social inequalities and the burden on primary care is an NHS priority. Whilst some SP initiatives are addressing this priority, many variations exist in the interpretation of SP. There is therefore a need to reach some consensus on the definition of SP, and to critically explore its theoretical underpinnings.
This project will scope the provision of SP and review its theoretical underpinnings in the UK and Ireland, in order to develop a larger study addressing the urgent evidence gaps in the research on its comparative and economic effectiveness.
Dr Katrina Proust
International Institute for Global Health, Malaysia
Historical perspectives on the interplay between public health and urban planning in Penang, Malaysia
Human society is rapidly becoming urbanised. Urbanism offers significant opportunities for improved human health, but it also has serious negative health impacts. The development of policies to improve urban health, and mitigate risks, is hampered by the loss of the traditional collaboration between the public health and urban planning professions. This loss was seen worldwide during the 20th century, suggesting that this bifurcation is a natural occurrence, not contingent on local circumstances. This is consistent with the hypothesis that urban systems evolve naturally into polycentric structures, often with reduced communication between governance centres.
We will investigate this hypothesis using an innovative approach that blends historical data with system analysis in a pilot study of George Town, Penang, Malaysia. Archival research will be undertaken to identify significant transitions in the relationship between urban health and planning from 1786 to 1986. The data will be analysed using a systems approach to explain the drivers of change in the complex interactions between urban form, environment and health, and to identify promising ways to rebuild the relationship between public health and urban planning. This study will also identify a network of scholars and governance groups interested in further integrative work in this arena.
Dr Annette Rid
King’s College London
Towards a humanitarian research ethics
Disasters are natural or human-related events, such as earthquakes or wars that vastly outstep the affected societies’ ability to cope. Disasters frequently have a devastating impact on individual and population health requiring an urgent humanitarian response. Yet the evidence base for humanitarian health interventions is widely considered insufficient, raising ethical concern over the effectiveness of the existing interventions. More humanitarian health research is urgently needed. However, the ethics of conducting such research is both complex and distinctive. Disasters often involve profound uncertainty and resource constraints, heightened vulnerability, pre-existing injustices, and numerous actors with diverging values and beliefs. To date, the resulting ethical challenges have not been adequately addressed – as was sorely illustrated by the controversy around clinical trials in the ongoing Ebola outbreak. This project aims to take the first steps towards a robust humanitarian health research ethics.
The project has three goals: 1) To systematically review the existing literature on the ethics of conducting clinical and public health research in disaster situations 2) To identify and interview key stakeholders about the unsolved ethical challenges in conducting such research 3) To develop a larger empirical bioethics project on humanitarian health research ethics.
Dr Julie Roberts
University of Nottingham
Televising childbirth: understanding media impacts on perceptions of risk, women’s choices and health
This project will begin to investigate the relationship between televising childbirth and women’s experiences of labour and birth. Midwives and other healthcare professionals debate the risks of televising childbirth, arguing that it may increase fear of birth, but this debate is happening in isolation from media/television studies that could provide methodological insights. Television scholars have identified normative representations of birth but struggled to link these with impacts on women’s experiences and health.
This Seed Award will bring together cultural and television studies, midwifery, health humanities, industry and service-user perspectives to develop an innovative, theoretically-informed approach to study childbirth on television and its implications for women’s experiences of risk, choice and autonomy during pregnancy and birth.
Professor Aloysius Niroshan Siriwardena
University of Lincoln
Networks exploring Ethics of Ambulance Trials (NEAT)
This project will develop a network of academics, health professionals and ethicists to explore the ethics and practice of conducting randomised controlled trials involving ambulance services. This is a much needed and rapidly expanding area of research with specific ethical and logistical difficulties due to the urgency of conditions and treatment needed in emergency situations, and their impact on recruitment, randomisation and consent procedures.
Our key goal is to build a network of UK expertise to promote knowledge, inform best practice and develop further funding proposals for research into the ethics and conduct of ambulance trials building on and extending proposed preliminary work. This includes conducting: a systematic review and narrative synthesis of ethical approaches in ambulance trials published since 2000; a review of current legal and ethical requirements in ambulance trials in the UK and beyond; pilot qualitative studies to inform further studies into the ethical issues presented by ambulance RCTs; and two networking events to discuss findings and explore avenues for further study.
Dr Jamie Tehrani
Towards an epidemiology of health conspiracy stories
We plan to develop novel, interdisciplinary approaches to the cultural epidemiology of health conspiracy theories. These include beliefs about secret agendas behind vaccination programs, the side effects of medical treatments, and cover-ups by the government or pharmaceutical industry. Such theories are widespread in many countries around the world and can have highly detrimental and far-reaching effects on health and wellbeing.
We will use this Seed Award to develop pilot projects that link micro-level factors, affecting the virulence of these theories (e.g. the psychological properties that make certain beliefs particularly catchy and memorable) and the susceptibility of individuals (e.g. attitudes and prior beliefs), to macro-level, ecological factors that shape the context and vectors of transmission. The projects include designing controlled cultural transmission experiments and a series of ethnographic feasibility studies carried out in five field sites. The goals of the project include establishing proof of concept for the epidemiological approach, a publication setting out future research agendas, and a large grant application.
Dr Sarah Waters
University of Leeds
Suicide Voices: narratives of trauma in the globalised workplace
This project examines the ‘epidemic’ of suicides within the globalised workplace during the 2000s and asks why work, or conditions of work, can push some individuals to take their own lives. It aims to bring a critical humanities perspective based on a close reading of suicide testimonies in their social, cultural and economic contexts, to bear on emerging public health research on the rise of economic suicides internationally.
The project investigates what suicidal individuals’ own testimonies can tell us about the social conditions that motivate self-killing in work and therefore provides a critical alternative to current epidemiological approaches to suicide in public health. Building on an emerging collaboration between humanities and public health researchers in the UK and France, the project breaks new ground in its interdisciplinary and transnational research network that expands and deepens our understanding of the workplace suicide crisis internationally, and would lead to further larger funding applications.
Dr Lisa Baraitser
Birkbeck, University of London
Waiting times: waiting and care in the time of modernity
This project investigates waiting times in relation to mental health, clinical contact time and care. It will bring together perspectives from medical humanities, medical history, psychosocial studies, literary studies and new studies of temporality, to think critically about waiting times in mental healthcare provision, the time-space of the GP encounter and practices of care for very elderly people.
Using an emerging body of scholarship that reformulates the speed and mobility commonly associate with modernity and emphasises slowness and stilled, impeded or suspended time, the project investigates contemporary experiences of waiting in clinical and care settings in what are felt to be increasingly frenetic times. It will provide a scoping study to be completed on the history of managing waiting in the NHS, from 1948 to the present day.
A revolution for health? An exploration of detecting meaning and sentiment in user-generated social media and web content
A growing number of people use the Internet to find information on medical problems, to chat in online health forums and even to self-diagnose and self-medicate. This has created new, very large datasets of unregulated, user-generated health data.
This study will explore whether this data can be exploited to spot trends in citizen-generated unregulated health data online, using a pilot study drawn from mental health. It will also provide useable and robust insights for health professionals and clinicians that will enable them to spot emerging trends and provide early warning signs when there might be a lack of official provision, providing online data that could inform future responses. The project aims to give a better understanding of public and patient attitudes and feedback towards certain types of prescription and treatment, and the risks and opportunities presented to patients through the medical information available online. Ethical considerations, such as when and where informed consent is required, will be explored, and help inform whether this information can be used by clinicians and health services.
Dr Nuno Ferreira
University of Edinburgh
Psychological predictors of chronic pain in paediatric populations
Chronic pain (eg rheumatoid arthritis, migraines) is a common experience among young people seen by paediatricians. It can lead to disability and impaired functioning and quality of life. Research has shown that psychosocial risk factors (fear of pain, catastrophising, parental catastrophising or avoidance) offer a better explanation of the impact chronic pain has on disability and functioning in young people than pain severity alone. Evidence from adult pain research has proposed acceptance of pain as a significant protective factor in chronic pain, but the value of this alongside previously identified risk factors has not been investigated in paediatric populations. Most research on paediatric chronic pain has focused on discrete populations even though it is described as a trans-diagnostic phenomenon.
This project aims to investigate the role of acceptance and parental coping styles as protective and risk factors in the adaptation to chronic pain in mixed paediatric populations. It also aims to provide a base of evidence to develop acceptance-based intervention programmes for young people and parents aimed at improving functioning and quality of life in young people with chronic pain.
Professor John Frank
University of Edinburgh
Finding the right ingredients: improving mental health and wellbeing through food-centred activities
Nutrition and social interaction can play an important role in prevention and recovery from mild to moderate mental health problems, and can address the obesity-related comorbidities caused by mental health medication. Food is a universal preoccupation, so community-based services are well placed to engage the widest possible range of people. However, there is a glaring lack of evidence-based, food-centred interventions for mental health patients at the community level.
This project will do early-phase research to develop an intervention for people who access services through community-based mental health organisations. A novel intervention-development method will be used to create a food-centred intervention, grounded in theory and the experiences of the target population, who will work with us to test and refine logic models, linking activities to outcomes. This study will inform subsequent pilot phases that will test recruitment and data collection procedures, and generate data to determine sample size. The aim is a realist randomised controlled trial to assess the mechanisms of action, effectiveness and cost-effectiveness of a community-based food-centred intervention for mental health and wellbeing.
Dr Rebekah Lee
Goldsmiths, University of London
Why do road safety interventions in South Africa fail? Using historical and cultural perspectives to solve a public health dilemma
This project proposes to explore, and critically interrogate, an epidemiological turn evident in post-apartheid South African road safety interventions. Historical and cultural approaches can transform our understanding of the road accident epidemic in South Africa, and of the limitations of current public health campaigns to address it. The project aims to construct a broader historical account of how black South Africans have used, and related to, the road from the early 20th century to the present day. It will also explore popular and localised forms of road safety, including the use of rumour, social media and music, asking how far these differ from public health initiatives. The project will refine its conceptual and empirical ambitions by investigating available archives and lines of research, testing out experimental methodology and locating Africa-based researchers.
Dr Rosemary H M Lim
University of Reading
How do patients with Alzheimer’s disease, and their carers, view and manage medicine-taking?
This study aims to explore and explain medication non-adherence experience by patients with Alzheimer’s disease. To date, no studies have systematically explored the interplay between working memory, recognising medicines, generic dispensing and medication taking in patients with Alzheimer’s, and how family carers support patients with medicine-taking in their own home.
The study involves the innovative use of a human factors approach incorporating qualitative methods. Key outputs include the generation of new data on medicine-taking in patients with Alzheimer’s, research publications, and a unique network of collaborators (patient representatives, healthcare practitioners and academics) that will direct key research. Evidence from this study will provide the foundations for potentially more effective support models that we will investigate in a subsequent grant application (the overall aim is to improve patient experience and quality of life) to the NIHR Research for Patient Benefit funding scheme.
Professor Peter Littlejohns
King’s College London
Ethics and equity in priority-setting for health: creating an ethics working group for the international Decision Support Initiative (iDSI)
The international Decision Support Initiative (iDSI), established in 2013 and led by NICE International (UK), is a partnership of organisations supporting government decision-makers in low- and middle-income countries in their efforts to set priorities for public spending on the health sector more systematically. Priority setting for health in resource-limited settings is morally complex, and policymakers face ethical dilemmas in healthcare spending decisions. King’s College London, in partnership with NICE International, Johns Hopkins Berman Institute for Bioethics, the Centre for Global Development and Stellenbosch University proposes establishing an Ethics and Equity Working Group to work with iSDI in providing practical guidance to governments in navigating the ethical challenges of priority setting, safeguarding against egregious moral harms from inappropriate resource allocations, supporting morally defensible decision-making and developing a research strategy for future guidance. This funding will enable vision, strategy and implementation arrangements for a fully operational working group to be developed.
Dr Elizabeth McFall
Insuring healthcare in a digital world
Huge claims are being made about the impact of digital technologies on healthcare provision. As digital health, Big Data and the Internet of Things converge with insurance systems healthcare is to become more democratic and more personalised, individual health data will be captured on devices and shared directly with public and private health providers and insurers, and competition to find ways of measuring, valuing and monetising data will intensify. A systematic assessment of these claims is urgently required.
This project will explore the practices and ethics of digital recording and economic valuation of individual health data. Private insurance schemes already reward healthier behaviour. The NHS has embraced the use of apps to change behaviour, and is running pilot schemes to integrate data from wearable devices into Patient Health Records. But who decides what constitutes healthier behaviour, and by which digital health measures? Can citizen-consumer-patients opt out or have oversight of all the uses to which their data might be put? Should individuals be held financially responsible for their own health? This study will focus initially on the extent of digital-financial health convergence in the UK using digital research methods and in-depth interviews with emerging key actors in the sector.
Dr Gavin Miller
University of Glasgow
Science fiction and the medical humanities
This project asks why science fiction matters to the medical humanities. ‘Science fiction’ is taken to include the familiar genre elements of narrative fiction, cinema and TV, but also extends to the technoscientific imaginary, and its imagining of future possibilities enabled by biomedical technological progress. To avoid merely cataloguing innovations within science fiction, the project explores three methodological approaches: science fiction as public engagement, utopian extrapolation and socio-political critique.
The goal is to do the groundwork for future, collaborative, large-scale research projects informed by questions developed within this project’s portfolio of exploratory activities and outputs. A series of themed workshops and a concluding conference will consolidate a network of interested researchers, clinicians, and writers. An online bibliography of primary and secondary sources will aid future research. Significant research questions are defined by one or more pathfinding peer-reviewed articles, accompanied by a themed issue of BMJ Medical Humanities. Public engagement, and creative stimulus to the field, are provided by a creative-writing competition on the theme, ‘Science Fiction, Medicine, and Disease’, with shortlisted entries published in a paperback volume.
Dr Patricia Skinner
University of Winchester
Effaced from history? The disfigured and their stories from antiquity to the present day
Two international workshops (in December 2015 and June 2016) will design and refine a long-term collaborative project to reconstruct the hidden histories of disfigured people from the Roman era to the modern day. The key goal is to establish a robust collaborative, interdisciplinary network of established scholars and new researchers, combining humanities scholars and medical practitioners.
The workshops will explore five key themes: 1) Documentation: Who was disfigured in the past? Collections and collations of accounts of and by disfigured people 2) Queering the face: reading texts from a disfigured perspective 3) Faking, fixing, facing up: strategies to ‘pass’, cosmetic interventions, surgery as and for disfigurement 4) Gazing and staring: the visual consumption of disfigured people, past and present 5) Changing places: documenting, deconstructing and defusing prejudice.
Dr Camilla Speller
University of York
A plaque on both your houses: exploring the history of urbanisation and infectious diseases through the study of archaeological dental tartar
Increasing urbanisation has created epidemic incubators, fuelling infectious diseases and often increasing susceptibility to them. Longitudinal perspectives on the socio-environmental conditions which shape the emergence and ‘re-emergence’ of infectious diseases can help to mitigate and prevent epidemics in rapidly urbanising nations. Regrettably, human health experiences throughout much of the (pre-)history of urbanisation are clouded by a lack of reliable data on disease exposure and transmission.
This project will develop a new, innovative approach, which recovers evidence for infectious disease exposure from the mouths of skeletons. Archaeological dental tartar (mineralised plaque) entraps and preserves DNA and proteins from multiple oral and systemic infectious disease pathogens. Uniquely, this can provide insight into past microbial landscapes and disease exposure rates – information not previously available through historical or archaeological analyses. The objectives of this project are: to develop new molecular pilot data on disease exposure in the historically well-documented context of Industrial England; interrogate and corroborate this pilot data drawing upon interdisciplinary expertise in York; and to forge a multi-institutional network investigating historic disease environments and the dynamics of human-pathogen cohabitation throughout the history of urbanisation.
Dr James F Stark
University of Leeds
Pasts, presents and futures of medical regeneration
How can medical humanities change how we think about, carry out, respond to and discuss medical regeneration? In a modern context, regenerative medicine is a major sub-field of biomedical research, described by the Mayo Clinic as a ‘game-changing area of medicine with the potential to fully heal damaged tissues and organs’. Based on techniques as diverse as stem-cell therapy and biomedical engineering, this branch of translational research has the potential to address challenges raised by ageing populations, stretched supplies of donor organs and chronic diseases.
This project will bring together researchers from across the medical humanities and biomedical sciences to examine what we can learn from past ideas and practices of medical regeneration, and how this might inform the social, cultural and clinical dimensions of regenerative medicine in the future.
Dr Suzy Willson
Arts-based learning in medical education
Using methodologies from the arts, Performing Medicine at the Clod Ensemble works to improve healthcare practitioners’ essential clinical skills by addressing the cultural and social contexts in which healthcare is delivered. This project is contextualising, theorising and evaluating how this non-medical interdisciplinary intervention may best develop medical education to improve health.
Dr Abigail Woods
King’s College London
Towards agri-system thinking: an integrated approach to problems of modern livestock production
This project aims to produce an ambitious plan of work to address problems of livestock health, productivity, welfare and the environment, all of which are commonly associated with intensive farming. In contrast to previous studies which have examined these problems in isolation, this project will focus on the nature and dynamics of the agricultural systems that gave rise to them. This approach is essential is we are to confront the threats these problems pose to food security, ecological sustainability, animal well-being and the public acceptability of modern livestock farming.
Led by scholars from history, social science and epidemiology, the project spans the historical emergence and characterisation of these problems, their present-day manifestations, and how they might evolve under a drive for sustainable intensification. There will be two facilitated workshops, bringing together stakeholders and scholars from a range of backgrounds for a frank exchange of views about the issues, deficiencies in their understanding, management, governance and communication, and how these could be addressed through an integrated, interdisciplinary programme of work.