NIHRDataInsights/HRCSData huggingface dataset:
Title: Positively Belonging in Peru?: Venezuelan Migrants with HIV/AIDS at the intersections of Pharmaceutical Citizenship, Biosocialities, Race and Biomedicine.
Funder: Wellcome Trust

Abstract: The feminisation of HIV is an increasing issue of concern, especially amongst Latin American migrant populations. As the predominant demographic of those living with HIV in the region are men-who-have-sex-with-men (MSM), there is a gendered Diversity & Inclusion gap. Women living with HIV have different needs & experiences than MSM, however due to gender-based constraints (e.g.childcare, home-based-working) they are less present/visible in my research environment, as well as within local NGO activities/projects. How the activity will look: Working alongside the United-Nations-Population-Fund (UNFPA), this two-day participatory workshop will bring female migrants living with HIV in Peru together to discuss and ‘story-tell’ specific experiences and needs that may be overlooked due to lifestyle constraints limiting participation in research and NGO projects. Relevant stakeholders will be invited and, learning horizontally from the experiences of migrants, we will collaboratively discuss how to address the feminisation of HIV in migrant populations. We will professionally produce an informative-animation to disseminate outcomes/stories widely and easily through social-media. This will ensure that a) research environment and NGO activities are more hospitable to the gender-specific barriers to participation faced by migrant women; b) migrants themselves have opportunities for their voices to be heard and fed-back into research and NGO activities. What we will achieve for: Diversity & Inclusion Initiatives: Greater understanding of the migrant-based feminisation-of-HIV amongst relevant stakeholders, and greater inclusion of women in research where they are often left-out due to practical constraints. Participants/Collaborators: Prioritisation of experiences and voices of female migrants living with HIV, thereby empowering them.


Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE
Title: Youth Voices For Planetary Health
Funder: Wellcome Trust

Abstract: Leveraging our existing projects and partnerships with young people, World Obesity has a unique opportunity to help the HCN expand its audiences, as we mobilise youth organisations from food, health and climate spaces to help disseminate the messages produced and take forward the HCN’s work in 2022. By focusing on youth rather than driving a specific issue ourselves, we open the door to mobilise and create momentum across a wide range of areas relevant to HCN. In the lead up to COP26, World Obesity will work with youth leaders to produce advocacy videos for social media based on the HCN core messages. The short videos will be montaged into a digital youth HCN manifesto, which will be launched at The UN Climate Change Conference of Youth (COY). Following COP26, we will continue to develop the youth arm of HCN, convening a workshop for young people already engaged, as well as other youth leaders who emerged at COP26. The virtual convening will aim to reflect on COP26, refine the HCN’s existing messages and co-create new strategies to progress the HCN’s work in 2022. In Q1 2022 we will also produce three podcast episodes, hosted on our youth facing platform Healthy Voices.


Research activity codes: 3.1 PRIMARY PREVENTION INTERVENTIONS TO MODIFY BEHAVIOURS OR PROMOTE WELL-BEING
Health categories: GENERIC HEALTH RELEVANCE
Title: Paternalism, Health, and Public Policy
Funder: Wellcome Trust

Abstract: It is a widely-shared assumption that we ought not to treat rational adults paternalistically. In particular, we should respect agents’ decisions about their own medical treatment. Yet in certain public health contexts it seems more appropriate to focus on promoting citizens’ well-being, rather than on respecting choices. Indeed, in some contexts it is not obvious what respecting autonomous decisions would require. For example, when dealing with diverse groups with conflicting preferences, or when implementing public health policies for populations whose autonomous capacities might be called into question, such as children and disabled individuals. Do we still have a responsibility to avoid paternalism in these cases? Is paternalistic treatment even possible here, if we cannot identify the autonomous will of these individuals or groups? The philosophical literature has produced sophisticated models of paternalism, but typically focuses on small-scale interactions between individuals. Thus, it fails to adequately engage with these more complex, but practically important, cases. Over four inter-disciplinary workshops, the proposed project aims to rectify this. We will stimulate new collaborative research to ground the philosophical discussion in the problems that are animating public and professional debate, as well as developing theoretical frameworks that can inform and structure potential policy responses.

Lay abstract: Most of us would be outraged if doctors made decisions about our medical care without consulting us. Yet few object to public health policies that shape behaviour and restrict choice. Similarly, few dispute parents’ right to override their children’s wishes and make healthcare decisions for them, or for carers to do so for disabled persons in their charge. What explains our different reactions to these two sorts of case? Should we be so willing to allow outside interference when it comes to populations and vulnerable individuals? Do groups, children, and cognitively disabled individuals have the kind of autonomy that can be respected, and would it be desirable to try? The project will investigate the tension between the state’s duty to protect the health of its citizens, and the worry that such policies take important decisions out of the hands of those most affected by them, undermining their autonomy and agency.

Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE
Title: Cellular mechanisms underlying the morphogenetic biomechanics of mammalian neural tube closure
Funder: Wellcome Trust

Abstract: Primary neurulation is a biomechanical process whereby the flat neural plate folds into a closed neural tube (NT). Closure initiates at the hindbrain/cervical boundary and “zippers” bi-directionally to form the cephalic and spinal NT. Failure of NT closure results in defects including spina bifida, which continue to affect 1:1,000 pregnancies. Despite advances in delineating its genetic control, we lack an integrated understanding of neurulation as a biomechanical morphogenetic process. To this end I have combined mouse posterior neuropore (PNP) live-imaging, laser ablation, and novel strain-mapping workflows to describe the tissue-level biomechanics of spinal closure. These revealed that the PNP is biomechanically coupled by a far-reaching actomyosin network, identified teratogenic/genetic models in which altered PNP biomechanics predict spina bifida, and identified a novel closure-initiation point (“Closure 5”) which forms at the embryo’s caudal extreme. We now propose to determine: 1. Are mechanical forces which promote and oppose NT closure balanced through actomyosin-dependent contractility overcoming tissue rigidity, up to a failure threshold? 2. Do biomechanical differences between spinal and cephalic closure account for the latter’s apparent predisposition to failure? 3. Does Closure 5 formation critically facilitate completion of spinal neural tube closure in humans and mice, and how is its morphogenesis regulated?

Lay abstract: How a fertilised egg forms a new organism remains a key question in biology. Hundreds of genes are known to be required for normal embryo development, but how these genes cooperate to direct origami-like folding of the early mammalian embryo to form organs remains largely unknown. We use engineering-inspired techniques to determine how cells generate mechanical forces which fold initially flat embryonic tissues into the tube-like precursor of our brain and spinal cord. Failure of formation of this tube causes severe birth defects, including spina bifida, which continue to affect ~1:1,000 pregnancies. Many mammals, including mice, develop spina bifida similarly to humans. Unlike humans, we are able to culture mouse embryos outside of the mother in order to microscopically visualise their development and compare mechanical forces generated by their cells during normal versus faulty tube formation. These analyses will hopefully allow us to better predict and ultimately prevent spina bifida.

Research activity codes: 1.1 NORMAL BIOLOGICAL DEVELOPMENT AND FUNCTIONING
Health categories: GENERIC HEALTH RELEVANCE
Title: Malawi Medical Humanities Network: Collaboration, Crossovers & Community Care
Funder: Wellcome Trust

Abstract: This award supports the expansion of the Malawi Medical Humanities Network (MMHN) through strategic integration within Malawi University of Science and Technology (MUST), Malawi. This new space will facilitate the development of a dynamic research agenda and curriculum, whilst establishing international exchange programmes across the inter-related fields of medical and health humanities and disability studies. MUST's support will position MMHN to engage national collaborators to further pursue interdisciplinary partnerships and develop dynamic learning-based knowledge exchange platforms. This award will enable MMHN/MUST to organise the development of a robust agenda and activities portfolio to 1) facilitate the development of a culturally-informed, translational medical and health humanities approach to address effective modes of community care, 2) to strengthen membership engagement across the country, 3) to promote collaborative and interdisciplinary research projects, 4) to develop competitive scholarship in theory, methods and practice and 5) to showcase national projects that directly address interdisciplinary approaches to public health and community wellness and approach challenging and taboo health issues. Overall, this fund will support the network's transition into a sustainable platform offering greater support to create innovative spaces for interdisciplinary dialogues and define world-leading African crossovers between the arts, humanities, social sciences and health studies.


Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE
Title: Diversity Amongst Decision Makers?: Black & Minority Ethnic (BME) Representation in Pandemic-Era NHS Management
Funder: Wellcome Trust

Abstract: Though Black and Minority Ethnic (BME) populations have been significantly overrepresented in COVID-19 mortality statistics, they are vastly underrepresented in NHS management. It is critical to address this lack of diversity amongst decision makers to ensure equitable representation, as current NHS leadership is not adequately representative of the workforce or communities for whom it cares. Principally this project asks: what is the scope and capacity within non-clinical NHS management and NHS decision-making to understand and address BME healthcare worker experience in the face of emerging and changing health care structures, and how can it be improved for the future of equitable health service delivery and diversity in the workforce?Working with the Nuffield Trust, key project goals are: • Investigate the current understandings and approaches to race and ethnicity within non-clinical London NHS Management teams. This will be achieved through embedded ethnography within 1-3 London NHS Trusts; chosen for diversity of workforce. • Encourage more open dialogue to navigate ethnic and racial concerns when it comes to mitigating COVID-19 and other future health risks. This will be achieved through an open-access, widely available report and associated workshop-toolkit that will be published online and circulated to management teams and stakeholders.

Lay abstract: Background to the research problem:Black and Minority Ethnic (BME) communities are overrepresented in UK COVID-19 mortality cases, yet they are significantly unrepresented at NHS management level. This is an issue, as the lack of diversity within non-clinical management means that NHS leadership is not representative of the workforce or communities that health services serve, which in turn can impact negatively on public health.My approach:Working with the Nuffield Trust, I will undertake qualitative research and observations within 2-3 London NHS Trust management teams and staff BME networks, interviewing managers and conducting focus groups.Expected impact:I will produce a report and workshop toolkit that will be available open-access for all NHS management staff, stakeholders, and the public. I expect that this will impact management staff ability to address team diversity concerns and begin to engage in dialogue as to how to improve this for the future.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE
Title: Marie Curie 2022 Research Conference
Funder: Marie Curie

Abstract: Background: Marie Curie's 2022 Research Conference 'Improving End of Life for All' Took place Sunday 30th January – Friday 4th February 2022. Week long conference bringing together thought leaders and key professionals from across research, policy and health and social care to share the latest evidence and innovation in palliative and end of life care. The conference included the following 6 sessions: 1. Out of Hours care 2. Are we ready for conversations about death and dying? 3. Financial insecurity at end of life 4. Mental health and wellbeing 5. Bereavement: experiences of carers, family and services 6. Challenging inequity in pallative and end of life care. See full programme here: https://www.mariecurie.org.uk/globalassets/media/documents/research/annual-research-conference/marie-curie-conference-week-programme-with-timings-28jan22-final-2.pdf

Lay abstract: Background: Marie Curie's 2022 Research Conference 'Improving End of Life for All' Took place Sunday 30th January – Friday 4th February 2022. Week long conference bringing together thought leaders and key professionals from across research, policy and health and social care to share the latest evidence and innovation in palliative and end of life care. Touched on subjects including out of hours care, bereavement, inequity, financial insecurity at end of life etc.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE
Title: Developing future research agendas on the socioethical impact of genomics through interdisciplinary live data-sharing
Funder: Wellcome Trust

Abstract: This project will develop a forum for interdisciplinary collaborations and collective imagination on the socioethical implications of genomics, using live data-sharing as a spring board to theoretical and conceptual enhancement, and future research agenda development. The project will bring together academics, researchers, clinicians, policy-makers and doctoral students working on, or alongside, the socioethical implications of genomics, for four focused workshops over 24 months, informed by the input of a patient/public advisory group. These workshops will provide otherwise non-existent opportunities for collaboration through the presentation and collective curation of current research data and emergent analyses, presented along axes of core cross-cutting themes (e.g. risk/genetic responsibility). The workshops will highlight areas of interdisciplinary resonance for further development, with the ultimate goal of enhancing the theoretical robustness and transferability of underlying concepts, and illuminating pathways for future research. It is anticipated that the emergent network of researchers/academics/clinicians/policy-makers interested in socioethical genomics will continue beyond the lifetime of the project, providing an open space for sustained interdisciplinary data-sharing and collaborative analysis, to ultimately enhance the quality and robustness of research in this area, as well as highlighting new directions for the translation of research into policy and practice.

Lay abstract: As genomic medicine becomes integrated into NHS healthcare, understanding the social and ethical impacts this will have on people and society, is becoming increasingly important. However, relatively few researchers working on these topics share their data with researchers outside of their team or with those from different fields of expertise. This project brings together researchers, academics, policy advisors and clinicians from a range of backgrounds (e.g. social sciences, ethics, medicine, law) who would otherwise not meet, to work together to explore and better understand the impacts of genomics by sharing data and exploring together their emerging ideas. This data-sharing will occur through four workshops, informed by an advisory group of public and patient participants. The workshops will help to develop new ways for researchers to work together on themes that cut across research projects, to be continued beyond the lifetime of the project through online networks and future meetings.

Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE
Title: Open, reproducible analysis and reporting of data provenance for high-security health and administrative data
Funder: Wellcome Trust

Abstract: In the UK many types of routinely-collected data from the NHS and other government agencies are available for research. To protect privacy, data governance law requires that only project-specific portions of the data be extracted, filtered and anonymised before release for research.Currently little information is provided to researchers on the methods used to produce their data. This lack of transparency results in an increased risk of undetected error propagation and leaves the resulting research difficult or impossible to evaluate and reproduce.We will co-design, pilot, and evaluate methods for recording and reporting provenance for research using high-security data. The result will be a method to report data provenance that maintains privacy and makes the research more findable, accessible, interoperable, and reproducible. Our approach recognises that meeting the needs of both data guardians and researchers requires active cooperation. It is a collaboration between data guardians, computing scientists specialising in provenance and trust, an expert in service evaluation methods, and a specialist in open science practice. The project will provide a provenance ontology model for the high-security NHS Data Safe Haven environment and open-source resources for tracking and safely reporting provenance data for research therein. The method is designed to be scalable across the UK’s high-security environments that host a range of government data. No tools for capture and reporting of data provenance from these environments exist. This project lays the groundwork for a process that is required for fair use of the public’s data for health care research and innovation.


Research activity codes: 2.6 RESOURCES AND INFRASTRUCTURE (AETIOLOGY)
Health categories: GENERIC HEALTH RELEVANCE
Title: Developing AI-Vigilance, a disease monitoring and tracking algorithm
Funder: Barts Charity

Abstract: The application of artificial intelligence (AI) methods in healthcare has seen increasing success over the last decade. With the large volume of data and improved computational power algorithms such as Random Forests (RF), Support Vector Machines (SVM) and Neural Networks (NN) have become established especially in imaging and cancer diagnostics. The team is currently leading an Horizon 2020 funded international prospective cohort that records newly diagnosed paediatric patients with inflammatory bowel disease (IBD) including Crohn's Disease and Ulcerative Colitis. The aims are to identify long term national or regional trends in the disease incidence in the patient database and using a large environmental dataset characterise the exposures and behaviours that may drive differing incidence rates. The plan is to developt and test a neural network (long short-term memory network (LSTM)) algorithm which will allow us to study a large number of factors under a longitudinal and spatial setting in real-time. This project will show the ability of such an AI application to efficiently detect clusters of patients in real-time and link them to specific behaviours and exposures.


Research activity codes: 2.5 RESEARCH DESIGN AND METHODOLOGIES (AETIOLOGY)
Health categories: GENERIC HEALTH RELEVANCE
Title: Evaluating the NeoTree: An eHealth solution to reduce neonatal mortality in two low income countries: Malawi and Zimbabwe
Funder: Wellcome Trust

Abstract: The underlying software code for the NeoTree is open source and the NeoTree system provides an exemplar vehicle with which to facilitate and accelerate the sharing and re-use of nationwide newborn care data. Our proposed goals of this proposal are to maximise the efficient and meaningful sharing and re-use of data collected via the NeoTree, and the re-use of the NeoTree source code. This moves beyond the delivery of an open research database and is transformative in its approach to substantially enhance the impact of the overall project to improve newborn care in resource-poor settings. This work will showcase the potential impact and pathways of conducting open research in newborn care, maximise impact of the NeoTree platform for use in other disease and patient groups and enhance capacity for international partners to re-use the NeoTree data and thus improve population health and health systems delivery. We will deliver the following: • A guide for downloading and adapting the NeoTree code (to be hosted alongside the source code in GitHub under the MIT license); • A guide for implementing the NeoTree in a new setting, including downloading and setting up the open source code, configuring the technology to match the local healthcare setting and extending and adapting the code; • Data pipeline and guide for deployment; • Metadata for the full NeoTree data; • Training manuals for interrogation of NeoTree open data.


Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE
Title: History Bones: opening up the archive of the Brittle Bone Society
Funder: Wellcome Trust

Abstract: The project will catalogue the archive of the Brittle Bone Society which is primarily held by the University of Dundee Archive Services. Any material remaining at the Society headquarters will be transferred and catalogued and the catalogue will be available online. The material will be re-housed into appropriate archival quality storage containers and a proportion of the material will be digitised. An additional element of the project will be to conduct oral history interviews with Brittle Bone Society members and staff which will become part of the Society's archive. A project board will oversea the progress of the project and will assist in organising a dissemination event. • The archive will be fully catalogued allowing researchers to understand its content and identify relevant material • The material will be properly preserved ensuring its long term survival • The archive will be supplemented by recordings of people associated with the Society which add to the richness of the research resource • Awareness of the archive and its research potential will be increased, as will the likelihood of further accruals of material in future • Two interdisciplinary dissemination events will allow the discussion of archives relating to disability and the Brittle Bone archive in particular


Research activity codes: 1.5 RESOURCES AND INFRASTRUCTURE (UNDERPINNING)
Health categories: GENERIC HEALTH RELEVANCE