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The ethical governance of Artificial Intelligence health research in Higher Education Institutions 26 Jul 2018

Artificial Intelligence (AI) is increasingly being used in health research in areas such as genomics, medical imaging/screening, and health prediction of epidemics and disease outbreaks [1-6]. AI research has the potential to improve health outcomes but raises urgent, complex moral questions, including issues of AI design bias; AI's black-box nature and inherent lack of transparency; and the ownership of algorithms used in AI and the data they produce [6-12]. Such ethical issues challenge Higher Education Institution (HEI) ethical governance systems, which traditionally focus on notions of risk, consent and privacy in human participant research [13]. To preliminarily explore how we can move towards making these governance systems more appropriate for HEI AI health research, this project employs empirical methods to map one aspect of the AI research area, and explore the views, experiences and understandings of relevant scholars on: the usefulness of current HEI governance systems to oversee the types of ethical decisions they make during AI research; collaborating with the private sector and associated ethical concerns; their responsibility towards post-research/implementation issues associated with AI; and the need for specific ‘health research’ ethics governance. The goal is to make/disseminate preliminary recommendations to improve HEI ethical governance for AI health research.

Amount: £84,751
Funder: The Wellcome Trust
Recipient: King's College London

Public data, private collaborator: Will machine learning relocate medical knowledge? 26 Jul 2018

This study focuses on the transformations in the creation and ownership of medical knowledge that result from applications of machine learning (ML). In medical image recognition, ML applications are currently being developed and tested to assist in diagnostics. These developments are often carried out as collaborations between public and private sectors, with public medical institutions providing data and medical domain knowledge, and private technology companies providing ML expertise. However, the algorithms implemented in these tools are typically proprietary, trade secrets that underlie the competitive advantage of the companies that develop and operate them. There consequently limited transparency into and access to the medical knowledge that they generate. This knowledge is thus privatised in the sense that it is encapsulated within closed software that forms part of the IPR of a private company. This study analyses such risks of privatisation and the role of open data in medical research. By comparing cases of ML applications in Ophthalmology, by conducting semi-structured interviews with stakeholders and organising two participatory workshops, the project will examine the role of data ownership and explore measures that allow medical knowledge to be kept in the public realm while still attracting private collaborations for ML applications.

Amount: £57,307
Funder: The Wellcome Trust
Recipient: King's College London

Stroke Odysseys 30 Apr 2018

Stroke Odysseys is a production and tour of a dance theatre work and national education programme that engages the public with a discussion about neural plasticity, the creative process and stroke recovery. The performance will feature talented professional artists including composer Orlando Gough, filmmaker Magali Charrier, choreographer and director Ben Duke, librettists Chris Rawlence and Lucinda Jarrett working alongside people living with the effects of a stroke. The project is supported by neuroscientists including Professor Alex Leff and Dr Nick Ward (UCLH) and Dr Phil Clatworthy (Univ Bristol). It is designed to engage a wide range of constituencies in a debate about the role of creativity in stroke recovery including: those who have had a stroke and their families; health professionals; neuro-scientists interested in the relationship betweenneuroplasticity, the creative process and neurological recovery; artists and researchers. This funding will build on three years of practice research; we will expand the current vision of local community performance to a national touring production which with the accompanying education programme will contribute to the wider debate about the role of creativity and plasticity in neurological recovery.

Amount: £75,000
Funder: The Wellcome Trust
Recipient: Rosetta Life

Exploring physician altruism to improve quality of care 27 Jun 2018

Physicians’ concern for patient well-being (altruism) is commonly considered an important driver of quality in healthcare. Despite this theoretical recognition, interventions to improve care quality are often guided by the notion that physicians must receive extrinsic incentives (rewards, sanctions, etc.) to do the right thing. A reason is that empirical evidence on the influence of altruism in real-world clinical settings is scarce, given a number of methodological challenges. We argue for a new research agenda to explore physician altruism in applied research and encourage its recognition in care quality regulatory practice. First, we propose an innovative approach for identifying altruism in real-world settings, which addresses existing methodological challenges: we employ ‘mystery’ standardised patients to test whether patients’ financial well-being, as signalled by their insurance status, plays a role in physicians’ care quality and prescribing behaviour. Second, we study the extent to which altruism mediates care quality responses to private performance feedback (a regulatory intervention that specifically excludes extrinsic incentives, by design). The novelty of our study design and expected outputs will be disseminated to relevant academics and policymakers, to inform future research and policy practice.

Molecular Fizz Lab for East London 30 Apr 2018

Molecular Fizz Lab (MFL) is a new year-round participatory activities and training programme for young people and their families in east London. It will focus on food science and the impact of refined sugar on health by offering participative activities, using locally picked produce to develop a healthier drinks range. MFL builds on the success of the 2016/17 Molecular Fizz programme, delivered with young people living in Barking and Dagenham. The MFL project responds the needs of participants and partners for a continuation of this highly successful project that has demonstrably brought about tangible physical and mental health and wellbeing outcomes for local people. MFL will produce a permanent community programme, focusing on young people and families. MFL takes learning from the tried and tested Molecular Fizz four-step training and education workshop, increases social impact by creating a permanent year-round programme at Company Drinks’ new home in Barking Park. The programme includes weekly drop-ins, holiday "camps", an annual Molecular Fizz Academy and workshops for schools and colleges in the borough and elsewhere. All will culminate in the development of a healthier soft drinks range, created by young people. MFL will be delivered by Company Drinks an award-winning community-led cultural enterprise.

Amount: £36,000
Funder: The Wellcome Trust
Recipient: Company Drinks CIC

‘Epidemic Encephalitis and the Intersection of General and Mental Health Service Provision in Sheffield, 1917-1951’. 08 May 2018

Parity of esteem between mental and physical health has become a rhetorical keystone of twenty-first century political manifestos and health policies. Nonetheless, mental health services are defined by long waiting times and underfunding, challenging the idea that parity has been achieved. This PhD thesis will situate this agenda within the history of health care provision in Britain, demonstrating that although this concept has shaped policy for over a century, implementing it in practice has recurrently failed. To navigate the complexities of this issue, focus will be on the outbreak of Epidemic Encephalitis in Sheffield which had high incidence rates throughout this national epidemic during the 1920s and 1930s. Epidemic Encephalitis was characterised by mental and physical symptoms, and transcended the boundaries between these separate medical approaches. This thesis will present a practical analysis of how this condition was studied and treated by Professor Arthur Hall from the University of Sheffield and his contemporaries, which will demonstrate that despite progressive legislation, mental and physical health care remained institutionally and therapeutically separate. In revealing how and why parity of esteem failed in practice in this city and beyond, this research will offer insights for current policymakers, medical practitioners and the public.

Amount: £85,740
Funder: The Wellcome Trust
Recipient: University of Sheffield

Astrologaster 20 Feb 2018

We are creating Astrologaster, a video game inspired by the real-life casebooks of Elizabethan medical Astrologer Simon Forman. Astrologaster is an astrological comedy based on real-world historical figure Simon Forman, an Elizabethan doctor and astrologer who was considered a sage by some and a charlatan by others. Players take the role of Forman, applying his holistic medical approach to his patients’ medical, emotional and personal problems by interpreting astrological charts. Astrologaster is designed to engage a mainstream audience with the science and practice of medical record-keeping. Experiencing Forman’s casebooks in action affords players a unique and rare demonstration of how real-world patient data is constructed and interpreted. So far Astrologaster’s prototype contains only 3 patients, each with 1-2 cases. User feedback shows our target audience responds well to the richness of these narratives, but we need to create more in order to extend this 15 minute experience into a full game. We require additional funding to create these cases and to release the game to a worldwide audience on mobile and PC platforms.

Amount: £60,000
Funder: The Wellcome Trust
Recipient: Nyamyam

EVIPNet Europe policy and research scoping tool 18 Jun 2018

I propose to develop a policy and research prioritisation tool for use by EVIPNet Europe countries to improve knowledge translation between research and policy. The goal would be to create a ranking system to help health policy decision-makers pinpoint high-priority policy issues that would benefit from research input in clarifying the problem or framing options for its solution. It should also aid research policy decision-makers to identify where to invest research resources, taking into account policy needs, to create implementable recommendations. Such a tool would encourage decision-makers to analyse quantitative data, for example the burden of disease, and qualitative information, such as public attitudes, and reach agreement when allocating resources to programmes. To create it I would complete a scoping literature review on the merits of various existing tools and combinations of tools. I would gather a variety of evidence, including systematic reviews of best practice, and case studies from the region that explain how these tools have been adapted to work in similar settings. I would consult with the EVIPNet country knowledge translation networks on their particular research and policy needs and challenges so as to select and adapt a context appropriate design for the tool.

Amount: £14,388
Funder: The Wellcome Trust
Recipient: University of York

Death on the Nile: Forensic Medicine in Inter-War Egypt 17 May 2018

Recent historical work on the development of British forensic science contends that colonial medico-legal laboratories offered a testing ground for new ideas and technologies as well as a space in which British personnel might "...cut their forensic teeth..." While this argument is compelling, we currently lack a body of research that tell us how forensic medicine was organised and practiced in British colonies, how national and environmental contexts affected the development of forensic techniques and how practitioners shared forensic knowledge through imperial networks. This project, which aims to produce a book-length study of forensic medicine in inter-war Egypt, will go some way towards answering these questions. Using archival sources that detail the work of the Government Medico-Legal Institute in Cairo, located within the Forensic Medicine Archive (University of Glasgow), the Sydney Smith Papers (Royal College of Physicians, Edinburgh) and the National Archives, the project will investigate not only the routine work of testing for poisons and narcotics carried out by the Institute, but will demonstrate how the assassinations associated with Egypt’s struggle for independence, led to the development of forensic ballistics. Materials on inter-war forensic medicine at both the Wellcome and British Libraries will also provide essential context.

Amount: £6,083
Funder: The Wellcome Trust
Recipient: No Organisation

From 'A Penny in the Pound' to 'Free at the Point of Delivery': Cataloguing the pre- and post-1948 hospital records of Monmouthshire 16 Nov 2017

Key words: Monmouthshire hospital records; Welsh medical history; health records; Gwent Archives Gwent Archives holds an extensive and important collection of unlisted and partially catalogued (old) Monmouthshire hospital and health records. These records require cataloguing and conservation as a matter of priority to ensure long-term survival and accessibility. A view shared by a number of Wales’ leading historians who write in support of this bid, and will serve on an advisory board to oversee the development of this resource. A Research Resources Grant of £38,729 will fund a year project to: Create ISAD(g) compliant electronic catalogues Carry out cleaning and packaging of the documents. Implementation of these objectives will enable us to meet the following aims: To gain full intellectual and physical control over this important collection To professionally conserve the records To promote global accessibility to our health/ hospital catalogues To inspire interest and expertise in the medical history of Monmouthshire To promote academic research accessibility through standardisation The catalogues will be mounted on our website, the Archives Hub and incorporated into The National Archives/ Wellcome Library Hospital Records Database. A guide to our hospital and health collection and a project blog will also be produced.

Amount: £38,729
Funder: The Wellcome Trust
Recipient: Gwent Archives

MSc History of Science, Technology and Medicine 30 Jun 2018

My research will investigate how societal concerns around venereal disease (VD) assisted in the shaping and professionalization of gynaecology in the mid to late nineteenth century. I will be considering how medical understanding of VD shaped the emergence of gynaecology as a professional discipline. I will also be considering how moral and societal concerns about VD shaped gynaecological medicine, and the impact this had on the female body. To do this, I will be drawing on the North of England Obstetrical and Gynaecological Society collection at The University of Manchester, with particular attention given to the work of Sir William Japp Sinclair on gonorrhoea. VD, especially syphilis and gonorrhoea, remain amongst the most prevalent infectious diseases across the globe. The increasing development of antibiotic resistant strains outline how VD is emerging as a serious threat to the global community. This research will explore how VD and individuals suffering from VD were perceived within past society, and how this influenced the development of professional gynaecological medicine, with a significant attention to the gender dynamics that informed both, with concerns analogous to contemporary society.

Amount: £24,500
Funder: The Wellcome Trust
Recipient: University of Manchester

The Sexual Health Project 23 Aug 2018

The Sexual Health Project is a project to develop the first episode of a six part TV series set in the world of sexual health, a precinct not previously shown on TV. The script will be developed via a creative workshop with 4 sexual health researchers, forty 18-34 year olds, 8 actors, a director and a writer. The project will consist of initial discussion between the writer, director and health researchers and innovators.. Then there will be a storytelling workshop with all these participants and a diverse group of 40 young people. On the basis of this a first script will be written. This script will have a rehearsed and filmed reading with actors, directed by Tim Fywell and an audience of the workshop participants plus TV producers. The after show discussion will be audio recorded. The after show discussion will help establish the impact of this project on the diverse group of young people. This audio recording discussion can be used for future creative development and as a reference for sexual health researchers and innovators. Long term we hope to scale up the experience by making a broadcast TV series for BBC 3 to reach a wider audience.

Amount: £25,550
Funder: The Wellcome Trust
Recipient: No Organisation

Delivering Care Through AI Systems 08 May 2018

For this project, I aim to examine 4 issues. First, I will consider whether introducing machine learning (ML) systems requires a revision of the ‘standard of care’ for clinicians, by understanding the moral permissibility of using second-hand information (from ‘black box’ systems) and whether practitioners’ medical expertise justifies judgments about such systems. Second, given the possibility of ML systems systematically underserving groups that are underrepresented in the training data, I will consider accounts of distributive justice to operationalize ‘equal access to care’. Third, to address the disagreements between clinicians on how to trade-off risks in clinical choices, I will catalogue the factual, rational, and moral sources of this disagreement to yield a principled method of evaluating these trade-offs. Finally, I will weigh the potential harms and gains from deploying AI systems in healthcare so that certain ethical and legal arguments don’t deprive society of the good such systems can provide. Key goals: To represent the ethical concerns in deploying AI systems over the appropriate standard of care, ensuring equal access to care, and representing reasoning about risk trade-offs. To balance these concerns against the benefits of such a deployment. To deliver practical ethical guidance to healthcare policy-makers and AI system-builders.

Amount: £140,538
Funder: The Wellcome Trust
Recipient: University of Oxford

Fatal Flu - Spanish Flu and the Threat of Pandemic 16 Jan 2018

Working with health professionals, artists and educators Torquay Museum will use information about the Spanish Influenza of 1918-1920 to start a conversation with the public about our understanding of disease, its spread and future threats. This project seeks to offer an accurate pool of knowledge about flu whilst looking at the emotional effects on our lives of ill health and the possibility for positive change. Creative engagement within a museum context will offer people the opportunity to understand that things change by looking back at our own history, our responses to disease, and our ability to develop tools to fight these diseases. The project will include various strands of outreach to engage schools, older people and members of the wider community. This engagement will help to inform the creation of an exhibition which will run during the Flu season of 2018 to mark 100 years since the outbreak of Spanish Flu.

Amount: £39,000
Funder: The Wellcome Trust
Recipient: Torbay Museums Trust

Infants with intestinal failure. Establishing an ethical framework for an emerging therapy 23 Jan 2018

This project will establish a practical ethical framework for decision-making in neonatal intestinal failure (IF). It aims to identify circumstances in which active therapy might be ethically obligatory, circumstances in which it may only be ethically appropriate to recommend palliative care, and situations in which active treatment is ethically acceptable but not obligatory This will be achieved by combining empirical research with normative analysis and reasoning using a four stage process as described below: A critical interpretive review of empirical and theoretical literature will be carried out in order to acquire a thorough understanding of the clinical and ethical factors likely to be relevant. Qualitative methodology (semi-structured interviews with thematic analysis) will then be employed to develop a contextualised understanding of the problem as experienced and understood by a range of stakeholders including a healthcare professionals from different subspecialties, families and children. Coherence will then be sought between the empirical data and normative theory using reflexive balancing to reach defensible normative conclusions. Finally a draft guidance framework will be developed through a structured online consensus method (DELPHI) in order to gain consensus amongst professionals to develop a usable ethical framework for decision making in neonatal IF.

Amount: £327,300
Funder: The Wellcome Trust
Recipient: University of Bristol

Regulating healthcare through blockchain: Mapping the legal, ethical, technical and governance challenges 30 Nov 2017

Blockchain technologies have the potential to radically reshape many industries, including healthcare. These technologies create a distributed database across a network of computers, using cryptographic methods to verify the consistency of digital records and transactions. This could enable the secure, tamper-proof, transparent, and trustworthy management of health-related data. But some doubt whether blockchain can deliver on its promise. Others fear that it will deliver too much, providing efficiency and security without sufficient operational sensitivity to healthcare contexts. Blockchain is a form of ‘design-based’ regulation, entailing the hard-coding of regulatory norms into systems infrastructure and operation. For example, by creating a transparent and unalterable audit trail regarding data access and usage, or by building in privacy through data encryption. Hard-wiring norms (e.g. traceability and privacy) into healthcare systems might overcome shortcomings of conventional legal and ethical regulation, but is likely to face major implementation challenges. This project will identify, map, and examine the implications for utilising blockchain in healthcare. It will identify the legal ethical, technical, and governance opportunities, risks, and challenges. It will thereby begin to explore whether, and under what conditions, these technologies might be developed whilst remaining faithful to important ethical, democratic, and constitutional values.

Amount: £94,757
Funder: The Wellcome Trust
Recipient: University of Birmingham

J W Ballantyne a Hidden Collection in the Royal College of Physicians of Edinburgh 16 Nov 2017

The Royal College of Physicians of Edinburgh Sibbald Library is requesting funding to catalogue and conserve an important collection on developmental medicine built up by J W Ballantyne, a pioneering specialist in ante-natal care. The key goal is to enable wider research access to the collection through the creation of 3,325 MARC format catalogue records (supplemented by archive catalogue entries).

Migrant women's experiences of maternity care 23 Jan 2018

This project will explore migrant women’s experiences of maternity care in England, in the context of both a hardening anti-immigration consensus in the public sphere, and a funding crisis in the National Health Service, which is having a particularly acute impact on midwifery services (RCM, 2016). Migrant mothers have been especially stigmatised in policies and discourses around ‘health tourism’; pregnant women, for example, were named as one of the targets of the 2014 Immigration Act, restricting migrant access to the NHS. This policing of access to health services has been facilitated by the internal expansion of the border (Aliverti 2015; Nava 2015), such that hospitals are now required to carry out immigration checks on admission. Further, despite evidence suggesting that migrant women have a higher maternal mortality rate, their experiences of maternity care remain under-researched (Woodward et al., 2014). What scholarship exists tends to disregard the impact of the broader social and statutory environment. This project will establish whether migrant women can access adequate maternity care; what barriers, visible and invisible, prevent them from doing so; what the consequences of this are for migrant women and their children; and how NHS staff understand their role in ‘gatekeeping’ access to care.

Amount: £209,936
Funder: The Wellcome Trust
Recipient: Lancaster University

Residues and remains: Anthropology of practices around pregnancy endings 23 Jul 2018

My research explores the practices around pregnancy endings and their remains, including acts of forgetting and remembering, and asks what do these reveal about the status of foetuses, women and mothers in contemporary England? Pregnancy endings provide opportunities to interrogate anthropological assumptions about the contemporary family, motherhood, personhood and kinship. To analyse this, I will focus on the practices in the aftermath of a pregnancy ending to understand what they reveal about the values afforded to the remains in different contexts (clinic, home, burial site, crematorium, grave site etc) and by different stakeholders. My research will explore how reactions to and practices around pregnancy endings and remains reflect wider cultural trends in the UK, particularly around motherhood as highly moralized and notions of foetal personhood. I ask how does grief (or the absence of it) intersect with the relationship of the materiality of the remains and the woman’s body. I will conduct in-depth, embedded and analytic ethnography at the Rose Hill Clinic, East Oxford and other sites. Key outputs include a monograph, 3-4 journal articles, and materials aimed at women/ couples (i.e. newspaper articles, information video, radio/ television), health professionals and relevant others (i.e funeral providers, support groups).

Amount: £388,698
Funder: The Wellcome Trust
Recipient: University College London

Biomedical Research and the Politics of the Human 30 Jul 2018

The human is a primary reference point for the aims of contemporary biomedical research along with its ethical and political groundings. This project asks: what and who constitutes that human? Despite the many assumptions we may hold about what and who is human, no study has delivered fine-grained empirical research about how scientists, policymakers and regulators approach and define the human across the levels of cells, tissues, and organisms. A series of changes—in biomedicine and in the scholarship on science and society—signal that it is a crucial time to reconsider the meaning and function of the human in the life sciences. Using an inductive qualitative approach, this project offers an ambitious plan for an empirical reorientation with the human in relation to two domains of biomedicine that constitute the project’s work packages: 1) Kidney Organoids: miniature organs grown in petri dishes. 2) Interspecies Mammalian Chimera: injecting human cells into developing pig embryos Based on a theoretical framework that draws together insights from science and technology studies, sociology and legal and political studies, the project is built on detailed empirical observation of the two research domains covering four national case studies in the UK, Spain, Germany and USA.

Amount: £629,823
Funder: The Wellcome Trust
Recipient: King's College London