NIHRDataInsights/HRCSData huggingface dataset:
Title: Living Assessment: measurement, thresholds and the health of disabled and at-risk children in England, 1989-present
Funder: Wellcome Trust

Abstract: Living Assessment will explore two assessments of children in England since 1989: attempts to measure the support requirements of disabled children; and attempts to measure threats of harm to children’s health and development in statutory social work practice. How have measurements been made about how and when state provision is necessary? How have thresholds for provision operated and been justified? How do people experience these assessments, and what are their concerns? These are important questions for understanding the role of health and measurement in welfare assessments of children, and for deepening and contextualising debates about the assessments, which have been intensified by austerity. To address these questions first we will study historical materials, drawing on new sources. Second, we will gather oral testimonies. Third, we will study patient records. Fourth, we will pursue action research, including a Parliamentary Inquiry, in collaboration with MPs and Lords from the All-Party Parliamentary Group for Children. We will work closely with three groups of Experts by Experience: disabled children and adolescents, adult care leavers, and parents who have experienced social work intervention. Experts by Experience will be involved in research design, interpreting findings, analysing transcripts, and co-designing and co-implementing the action research.

Lay abstract: There is an urgent need to understand more about how health and measurement figure within assessments in England of i) children’s risk for serious harm to their health and development and ii) disabled children’s care needs. Together we have the skills to pursue this work, through an innovative application of the medical humanities: Anderson is a historian of disability; Duschinsky is a historical sociologist of child welfare; and Hutchinson is a research and policy analyst at the National Children’s Bureau, a major charity with a track-record of research and policy-influencing to support child and family wellbeing. Our project will draw on historical analysis, oral testimonies, study of patient records, and action research. We will be supported by the involvement of Experts-by-Experience and the All-Party Parliamentary Group for Children. Working together, we will create a new, contextualised understanding of these assessment and their meanings for children, families, assessors and policy.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: Effective analysis and experimental design for CRISPR screens with scRNA-seq readout
Funder: Wellcome Trust

Abstract: Understanding how cell fate decisions are regulated is a key question in molecular biology. Building on the CRISPR revolution, exciting technologies (e.g., CROP-seq or direct capture Perturb-seq) induce a genetic perturbation that is characterised, alongside the transcriptome of the cell, by single-cell RNA-sequencing. This enables a range of experimental designs that can, in principle, shed light on the transcriptional response to gene perturbations, its pathogenic and non-pathogenic variation, and the role of gene regulation during differentiation. However, current computational methods do not exploit this potential: in particular, the ability to accurately measure the effect of a given perturbation is lacking, and the potential to efficiently explore the space of all possible perturbations and conditions remain untapped. To address this, I will develop a comprehensive suite of computational tools (i) to infer transcriptomic effects of gene knockouts unconfounded by perturbation efficacy, (ii) for optimal experimental setup to increase insights gained from experiments and improve their scalability, (iii) to identify differences in gene regulation across individuals, and (iv) for the study of knockout effects during differentiation. This will lead to an improved understanding of gene regulation, its variation across individuals, and to improved differentiation protocols, with important consequences for cell therapy.

Lay abstract: Understanding how cell fate decisions are regulated is a key question in molecular biology. Exciting new technologies have enabled investigation of how mutating a specific gene in a single cell affects the cell’s function in a variety of different conditions. However, current computational methods do not fully exploit this potential: new methods are needed to improve the analysis of the data and to optimise the experimental setup. I will develop these new statistical methods and develop and make publicly available a comprehensive suite of tools. By enabling improved data analysis and experimental setup, my methods will contribute to improved understanding of how genes regulate other genes, of how this varies across individuals, and of how to best differentiate stem cells into more specialised cells, an experimental protocol with important consequences for cell therapy.

Research activity codes: 1.1 NORMAL BIOLOGICAL DEVELOPMENT AND FUNCTIONING
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: Crafting Contention: The role of zines in contesting mental health knowledge and practice
Funder: Wellcome Trust

Abstract: Zines (self-published magazines, graphic memoirs and comics) are rich, yet currently untapped, sources of knowledge about mental distress and psychosocial disabilities - how they are lived with, challenged and understood. This research will identify, analyse and co-produce Madzines: self-published magazines, comics and graphic memoirs, created by people with lived experience, which communicate critical ideas about mental health. Specifically, this research will explore how zines, due to their unique format, craft contention about mental health knowledge and practice. It will investigate how zines: • Challenge prevailing psychological, psychiatric and medical understandings, diagnoses and treatments; • Articulate specific forms of contention about controversial and hidden diagnoses; pathologised identities and experiences; • Communicate new understandings of mental health diagnoses, identities and experiences; • Function as a unique form of psychiatric survivorship offering new repertories of contention for the psychiatric survivor movement; • Utilise diverse styles of contention such as humour, parody and subversion. This investigation will define a new genre of Madzines and help transform the way zines are researched, understood and theorised. It will be used to explore how zines can contribute to formal and informal learning about mental health, challenge stigma and discrimination and inform policy and practice.

Lay abstract: Despite user involvement policies, mental health services have failed to deliver the changes demanded by the service user movement. Moreover, despite anti-stigma and awareness-raising campaigns, the stigma and discrimination of people with mental health difficulties persists. Progress depends, at least in part, on conceptualising alternative ways of seeing, practising and imagining mental health care. In this project we will identify, analyse and co-produce ‘MadZines’: zines, comics and graphic memoirs created and self-published by people with lived experience that communicate alternative and challenging ideas about mental health and psychosocial disabilities. We will explore their unique insights into how these conditions are lived with, challenged and understood. We will examine how these insights challenge dominant professional and lay knowledge and provide new ways of confronting stigma and discrimination. Our research will inform knowledge, practice and policy. Moreover, it will transform our understanding of the unique contribution zines can make to social change.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: Living ‘Addiction’ in states of disruption: a transdisciplinary approach to drug consumption and recovery in the Middle East
Funder: Wellcome Trust

Abstract: This project tackles the question of how people in the Middle East have experienced ‘addiction’ and how governments and social agents have reacted to changing drug phenomena in states of disruption (war, revolution, human displacement). It explores the consumption of mind-altering drugs in Iran and Lebanon, and their respective displaced communities (Afghans, Syrians), unearthing an alternative framing of pleasure/illness/care and ways of living ‘addiction’ that differ from the West-centric scripts on health/illness. Focusing on the life trajectories of past and present drug consumers during and after dramatic political change, armed conflict and human displacement, it questions how states of disruption affect the lived experience of ‘addiction’, how people make use of mind-altering drugs in dealing with unsettling conditions, and how health institutions and social agents transform their public agenda because of them. The project considers the case of drug consumers, ‘addiction’ scientists, and religious/spiritual healers. This leads to the reframing of the cultural, scientific and political environments that have made ‘addiction’ into a biomedical and ethical category in the contemporary Middle East. It adopts a transdisciplinary approach to ‘addiction’ using regional archives, bottom-up oral history, ethnographic immersion and visual data collection, engaging them in debates across history, politics and anthropology.

Lay abstract: ‘Addiction’ is a powerful diagnostic framework in interpreting human behaviour. Whether metaphorical (e.g. I’m addicted to it!), self-diagnosed or understood through biomedical inquiry, individuals are said to develop chronic relations with different things such as food, sex, gambling and mind-altering substances. Yet only illicit drugs are the object of strict political regulation and public control. But can we learn what is ‘addiction’ from drug consumers’ perspective? Do different political/ideological regimes influence people’s experience of ‘addiction’? Do cultures and historical events affect the lived experience of ‘addiction’? Can we understand it beyond the lens of pathology? I will use archival and ethnographic methods to analyse the everyday life of ‘addiction’ in states of disruption in the Middle East. Looking at Iran, Lebanon and Afghan and Syrian displaced communities living there, I will show how people using drugs, scholars treating ‘addiction’ and healers providing recovery shape the way we can understand ‘addiction’.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: Prosthetic Embodiment: The lived experience of health, disability and medical technology from the 1970s the present.
Funder: Wellcome Trust

Abstract: Prosthetic Embodiment investigates what it means to live – and live well – with prostheses. Adopting a historical approach, informed by critical medical humanities and disability studies, and focusing on artificial legs and their users, this globally sensitive project will be the first to consider how the experience of prosthetic embodiment has changed, from the 1970s through to the present. For people to use and live healthy lives with prosthetic legs, collaboration with those who make and fit them is vital. Through an innovative combination of historical approaches and visual anthropology, this study explores the agency and materiality of users, health professionals and technologies, following the relations between them in terms of prosthetic design, fitting, use, and recycling. A central question to be investigated is how practicalities of lives and bodily experiences are negotiated and renegotiated as users learn to live with new prostheses, and once again when devices are recycled through charitable organisations to new users in the global south. Exploring the diverse embodiment of people with limb difference will reveal important insights into how prostheses create both new possibilities and unexpected constraints on day-to-day living, and the experience of disability and medical technology more generally.

Lay abstract: Prosthetic Embodiment explores how the bodily and social experience of learning to use and live with prosthetics has changed since the 1970s. In this period, people who use prostheses collaborated with health professionals and manufacturers to remake prosthetic aids in ways that have transformed experiences of disability. The project investigates the experiences of four main user groups: Paralympians whose celebrated performances have served as the vanguard for a ‘post-human’ ideal; wounded soldiers whose recovery has represented a technological transcendence of the human costs of war; everyday users who developed daily practices to negotiate the possibilities and challenges presented by the new artificial legs; and users of recycled British prosthetics in the Gambia who shaped and adapted recycled prosthetics to suit their own circumstances. Following the artificial legs and their users, we can better understand the diverse ways how people incorporate medical technologies in their daily lives.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: Improving life chances & reducing child health inequalities: harnessing the potential of existing data
Funder: Wellcome Trust

Abstract: I will address three questions crucial to tackling child health inequalities (HIs): 1. What factors lie on the causal pathway between socio-economic circumstances and children’s health and parental health-related behaviours, and which are most likely to reduce HIs? 2. Who: Can we better predict those most likely to develop poor health (and will this help to target interventions more fairly and efficiently)? 3. How: To what extent can early years’ interventions, if rolled out at different scales (e.g. to everyone, those living in deprived areas, those at greatest risk), reduce HIs? Cutting-edge methods, and the novel application of traditional methods, will be applied in two complementary data sources: linked administrative data (in Greater Glasgow and Clyde – the UK’s largest health governing board and subject to the highest HIs in Western Europe) and three UK cohorts (Millennium Cohort Study, Growing Up in Scotland, Southampton Women’s Survey). Several aspects of child health (motor, social, cognitive and motor development; thinness, overweight and obesity; unintentional injuries) and parental health-related behaviours (immunisation; breastfeeding; smoking) will be examined. Maternal mental health, childcare and parenting will be investigated as mediating mechanisms that are amenable to intervention through early years’ services. Findings will inform local and national policy and practice.

Lay abstract: No Data Entered

Research activity codes: 1.2 PSYCHOLOGICAL AND SOCIOECONOMIC PROCESSES
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: Waiting Times
Funder: Wellcome Trust

Abstract: This project brings together an interdisciplinary team to investigate waiting as a cultural and psychosocial concept, and an embodied and historical experience, in order to understand the temporalities of healthcare. It represents a fundamental rethinking of the relation between time and care through a critical analysis of waiting in the modern period. Working across Medical Humanities and Psychosocial Studies, we will uncover the history, cultural representation, and psychosocial organisation of delayed and impeded time, from 1860 to the present. This work will underpin focused investigations of ‘watchful waiting’ in current general practice, psychotherapy, and end of life care. We ask which models of time operate within healthcare practices and develop new models of durational temporality to conceptualise how waiting can operate as a form of careful attention, historically and in the present. Contextualising these healthcare practices within broader social organisations of time, we open up the meanings, potentialities, and difficulties of waiting in current times. Through academic publications and extensive public engagement, we will reframe debates about waiting in and for healthcare, moving beyond the urgent need to reduce waiting times in the NHS, towards a more comprehensive understanding of the relation between waiting, care, and changing experiences of time.

Lay abstract: This project brings together an interdisciplinary team to investigate waiting as a cultural and psychosocial concept, and an embodied and historical experience, in order to understand the temporalities of healthcare. It represents a fundamental rethinking of the relation between time and care through a critical analysis of waiting in the modern period. Working across Medical Humanities and Psychosocial Studies, we will uncover the history, cultural representation, and psychosocial organisation of delayed and impeded time, from 1860 to the present. This work will underpin focused investigations of ‘watchful waiting’ in current general practice, psychotherapy, and end of life care. We ask which models of time operate within healthcare practices and develop new models of durational temporality to conceptualise how waiting can operate as a form of careful attention, historically and in the present. Contextualising these healthcare practices within broader social organisations of time, we open up the meanings, potentialities, and difficulties of waiting in current times. Through academic publications and extensive public engagement, we will reframe debates about waiting in and for healthcare, moving beyond the urgent need to reduce waiting times in the NHS, towards a more comprehensive understanding of the relation between waiting, care, and changing experiences of time.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: Evaluating Policy Implementations TO Predict MEntal health [EPITOME]: a Bayesian hierarchical framework for quasi-experimental designs in longitudinal settings
Funder: Wellcome Trust

Abstract: Mental health problems are a leading cause of ill-health, with 1 billion experiencing mental health or substance use disorders worldwide. In the UK, anxiety and depression contributed 8% of the years lived with disability in 2017 and are associated with the second largest costs to society after dementia. This morbidity is accompanied by substantial suicide mortality, which rose by 10.8% in 2018, with even faster rises amongst young people. Socio-economic disadvantage is strongly associated with mental ill-health. Austerity and immigration policies (i.e. systemic “shocks”) implemented in the UK since 2010 may have increased mental health problems, particularly in disadvantaged populations, including people from ethnic minority backgrounds and may have been further exacerbated by the COVID-19 pandemic. However, causal evidence is missing. Data typically available to evaluate such issues are observational (without random allocation) and population-wide (without controls), biasing straightforward estimation of causal effects. To advance causal inference of systemic shocks (policies, COVID-19) on population health outcomes, we will develop a generalisable statistical framework to overcome biases inherent to observational data. We will then apply this to evaluate the cumulative long-term causal impact of these shocks on mental health outcomes using longitudinal and spatial data, with particular focus on ethnic inequalities.

Lay abstract: Mental health problems are a leading cause of disability and death. They are unequally distributed in society, with people who experience more social and economic problems (such as low income, unemployment, or worse housing) being more likely to experience mental health problems. Mental health problems may be affected by Government policies which can impact the lives of millions of people. Recent examples include the rollout of Universal Credit, immigration policies such as the "Hostile Environment" policy (which led to the "Windrush scandal") or the effect of lockdown during COVID-19. Unfortunately, there are currently no scientific tools to test whether these policies affect mental health problems. We will develop new tools to overcome this problem. We will apply these to suitable datasets in the UK collected over the last decade, to see whether different national policies cause changes in levels of depression, anxiety, self-harm, suicide and psychosis in the population.

Research activity codes: 2.3 PSYCHOLOGICAL, SOCIAL AND ECONOMIC FACTORS
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: Can we develop a "cognitive vaccine" for intrusive memories of traumatic events from working in the COVID-19 pandemic? A novel and brief intervention to support ICU staff
Funder: Wellcome Trust

Abstract: Intensive care unit (ICU) staff face repeated exposure to traumatic work-related events and have reported high levels of posttraumatic symptoms during the pandemic. Novel, scalable and preventative interventions are required. We are developing a “cognitive vaccine” approach for ICU staff against one key symptom – intrusive memories of traumatic events. These are unwanted, distressing and disrupt functioning.Our novel, brief gameplay intervention is repeatable, flexible, non-stigmatising, scalable, and driven by mental health science. This digital intervention is guided by an initial session of psychologist support, then self-administered; delivered same day or months post-trauma, suitable for repeated trauma exposure, fits with busy lives of ICU staff, without discussing trauma detail. Part 1 uses a Bayesian design to optimise and co-develop procedures with ICU professionals and move at speed under pandemic conditions, allowing limited rollout (guided-version) in these unprecedented times.Part 2 uses a pragmatic RCT (three arms: guided/non-guided/attention-control) testing clinical effectiveness and acceptability to inform clinical practice. If the non-guided intervention is effective (i.e. no psychologist support) it will accelerate the speed of rollout.Meanwhile through global mental health workshops with stakeholder communities we seek to understand the views of various communities worldwide regarding implementation of this novel intervention form.


Research activity codes: 6.6 PSYCHOLOGICAL AND BEHAVIOURAL
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE