NIHRDataInsights/HRCSData huggingface dataset:
Title: Decolonization and global health research: initiating an African centred exchange
Funder: Wellcome Trust

Abstract: This award will support a series of interactions between academics from diverse backgrounds with a shared interest in mapping, analyzing and critically unpacking decolonization debates in global health research. Decolonization discussions and activism have become far more prominent over the last year, bringing both opportunities for positive transformation (through disruption, change and renewed interest in global power inequities) as well as challenges (including the ‘trending’ of the decolonization agenda leading to – at worst – the ‘colonization’ of the arena itself). Now, as much as ever, decolonization discussions and debates need to be critically examined. We will organize a set of exchanges and activities to: 1 Unpack and reflect upon the term ‘global health research’ using a decolonization lens; 2 Examine how tacit, or embedded, forms of knowledge from Africa are drawn upon and feature in global health research; 3 Imagine what a decolonized or African-centred, and ethical, research initiative in global health might look like; and 4 Share our learning, advocate for change, and identify an African home for future work. We will incorporate a covid-19 research lens, but only in recognition that covid-19 will shine a light upon or amplify far longer and deeper policies and processes.


Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE
Title: Developing a new ethics advisory service for UK Biobank
Funder: Wellcome Trust

Abstract: This proposal outlines the need for research support for the new UK Biobank Ethics Advisory Committee (UKB EAC), including the appointment of a senior research fellow (SRF). Located within a centre of excellence for clinical ethics and law research, the SRF will build the previous work of the Ethics and Governance Council (EGC), and undertake detailed empirical and conceptual research to support the research led arm of the new UKB EAC. The SRF will report to the UKB EAC and (indirectly) to UKB board and be supervised, and supported, by members of the EAC. This new research led service will ensure that advice, or position statements, from UKB EAC is evidence based and responsive to ethical issues as they arise, and that UKB will continue to maintain its robust ethical justification for current and future activity. In this way we envisage that that the UKB EAC will provide an ethical benchmark for existing cohort studies, as well as to new studies such as the new 5 million advance disease detection cohort.


Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE
Title: Womens Aid Federation England Archive 1974-2020
Funder: Wellcome Trust

Abstract: Women’s Aid Federation England (WAFE) is the national coordinating body for all local and domestic violence services, including refuges in England. It provides information, training and resources to these services as well as to other agencies. It monitors the experiences of and the provision for women and children suffering abuse. It lobbies, advocates and campaigns throughout England. The archive encapsulates the broad spectrum of its work. Growing out of the Women’s Liberation Movement in 1974 the organisation moved in twenty years from being one which met with aggression from the police to one which was highly regarded for its knowledge and research. The organisation marks its 50th year in 2024. WAFE is working in collaboration with the University of Leeds Special Collections and the Feminist Archive north (FAN) to safeguard the historical record and make it accessible for research. Collection, appraisal, documentation and preservation will ensure the collection is publicly available before this milestone year. New research collaborations will become active, learning resources will be created, and knowledge of WAFE's activity and significance will be shared and exchanged. The collection has interdisciplinary research significance and is a major resource for WAFEs own understanding of its contribution to health and society.


Research activity codes: 1.5 RESOURCES AND INFRASTRUCTURE (UNDERPINNING)
Health categories: GENERIC HEALTH RELEVANCE
Title: ‘What is my result?’ Bioethical and clinical perspectives on the navigation process from raw genomic data to genomic results.
Funder: Wellcome Trust

Abstract: My research will investigate how patients, clinicians and scientists navigate the outputs from genomic technologies. Today’s technologies have great power to diagnose, but provide far more information than previous targeted testing could. Genomic tests identify around 100,000 rare genetic variants per person, but the clinical significance of these variants will fluctuate with respect to multiple parameters including: the current state of scientific knowledge; the person’s age; their medical and family history; their genetic background; and environmental exposures. I will examine how, why, and when scientists, clinicians and patients conceptualise variants from genomic data as clinical results. I will adopt an empirical ethics approach drawing on grounded moral analysis. I will observe clinic appointments to examine how outputs from genomic tests are described in practice. I will interview patients and families having genomic tests, and conduct focus groups with clinicians and scientists who request, provide, or communicate outcomes from genomic tests. I aim to elicit perspectives on the nature of genomic results, and the processes by which they are constructed. Current debates and policy development often focus on ‘management’ of genomic results; my research will contribute by questioning what genomic results should be, and how they might be arrived at.

Lay abstract: In the past, genetic tests mainly focussed on particular parts of the genetic code (single genes) that might explain a patient’s health problems. Genomic tests look through almost all of the genetic code in one go, finding around four million variants (differences in the code) per person. Scientists and clinicians need to pick out clinical ‘results’ from these variants, but many variants have unclear consequences, or might only affect health in the far future. Some variants may have nothing to do with a patient’s current health problems, but could still be important for them or their family. My research will look at what we consider to be a result from genomic tests, and how we decide which variants to include as part of it. I will look at the perspectives of patients, clinicians and scientists, aiming to inform evolving policy on how genomic results are picked out from genetic code.

Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE
Title: Meat Your Persona
Funder: Wellcome Trust

Abstract: Meat Your Persona will further the public’s understanding of the connection between their meat consumption and its environmental and health impacts and will empower them with accessible information and tools to make better informed choices about their consumption. Building on the successful pilot (https://www.youtube.com/watch?v=QbHb4ap39nw), we propose a national tour, taking Meat Your Persona to audiences at urban and suburban shopping centres and community hubs. Our goal is to reach those with low science capital who are disconnected from the current conversation. In particular we will target Brexit-voting men outside London who are the most likely to eat the most meat and to not connect meat consumption with health and environmental impacts. We will capitalise on renewed public interest in evidence, using creative design methods to convey key facts from the LEAP research so that people are able to make better informed choices. We will actively signpost people to a purpose-built website where they can receive evidence-based support to reduce their meat consumption. The project will be evaluated independently to see if we have achieved our three goals: to drive behaviour change, build public trust in science and inform research through advancing the public conversation.


Research activity codes: 3.1 PRIMARY PREVENTION INTERVENTIONS TO MODIFY BEHAVIOURS OR PROMOTE WELL-BEING
Health categories: GENERIC HEALTH RELEVANCE
Title: Impact of Digital Pathology implementation on clinical processes, resource use and outcomes in Barts Health
Funder: Barts Charity

Abstract: A shift from routine microscope-based (analogue) pathology to the digital environment is highly relevant and timely in view of increasing cancer prevalence and workload with limited pathologist numbers. As with an analogue predecessor, digital pathology (DP) uses glass slides. Slides are scanned using whole slide imaging scanners to produce and store highresolution digital images of the physical slides. Automated image analysis tools assist in the interpretation and quantification of biomarker expression within tissues sections. The resulting images are accessible 24/7, enabling rapid, if necessary, remote evaluation and collaboration with transparency and consistency. DP implementation has the potential to enhance quality in meaningful ways: reduced errors, improve analyses, provide better slide views, and improve workflow efficiency. In 2019, NHS started implementing a regional DP network in the UK. Barts Health NHS Trust is initiating DP implementation in 2021. This project aims to evaluate the impact of DP implementation on clinical pathology services. DP implementation at Barts Health will be used as a natural experiment with individual assessments using ?before and after? study designs. We will assess the impact of DP on clinical pathology services focusing on three distinct diagnostic areas: on-site intraoperative frozen section consultations, routine internal and external samples, and Multidisciplinary Team Meetings. To quantify the effects of DP, we will assess staff productivity using time and motion studies; diagnostic workflow?s resources and costs using diagnostic workflows? mapping and costing methodologies; turnaround time, patient length of stay and other routinely collected outcome measures using interrupted time series analyses. Findings from these assessment will be used to project effects of DP on the Clinical Pathology Service across Barts Health. The staff experiences of working with DP will be surveyed. The study will generate evidence on different areas of impact of DP in a large UK hospital trust.


Research activity codes: 4.5 RESOURCES AND INFRASTRUCTURE (DETECTION);5.9 RESOURCES AND INFRASTRUCTURE (TREATMENT DEVELOPMENT);6.9 RESOURCES AND INFRASTRUCTURE (TREATMENT EVALUATION);8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE
Title: Strategic upgrade of crystal monitoring and optimisation equipment at ISMB, as critical infrastructure for structural biology and biochemistry
Funder: Wellcome Trust

Abstract: ISMB (Birkbeck/UCL) is renowned for its research in structural biology, successfully combining X-ray crystallography and electron microscopy and supporting users from a wider scientific community. The current set up for crystallisation includes a nanoliter liquid handler (Mosquito, SPT Labtech), an old Perkin-Elmer liquid handling robot for sample optimisation and an outdated Minstrel/Rigaku automated imaging suite. Recent crystallography beamline technological developments at high-end synchrotrons have pushed the boundaries of data collection and reduced the usable size of crystals down to a few microns. However, our current instrumentation does not allow us to take full advantage of these new technologies since refinement of crystallisation conditions, and monitoring of ‘microcrystals’ growth, cannot be managed by our outdated equipment. Moreover, two of the existing instruments are no longer supported by authorized services. Therefore, we are requesting the purchase of a new state-of-the-art ‘imaging hotel’ (UVEXps, swissci) and liquid handler (Dragonfly, SPT Labtech). Specifically, we propose to purchase a microliter liquid handler for optimisation of crystallisation conditions and a high-resolution crystal imaging system for storage, monitoring, imaging and detection of protein crystals. The two instruments will complement the existing liquid handler (Mosquito), while offering more flexibility to all users by remote access.

Lay abstract: Protein X-ray crystallography is the foremost method to study the atomic level structure of proteins. Knowing protein structures is critical for understanding biological processes and the development of new drugs and vaccines. Enormous technical progress has been made in methods to determine protein structures. But, a major bottleneck is protein crystal formation. We screen thousands of protein/chemical mixtures to discover the appropriate combination in which protein crystals form. This process requires automation in the form of robots. We are seeking to significantly increase our capacity to screen by purchasing a liquid handling robot which will accurately prepare the chemical mixtures for crystallisation. In addition, an automated imaging system will detect the growth of protein crystals. The new equipment will be of key significance to the protein crystallography facility at Birkbeck that supports a diversity of highly successful laboratories at Birkbeck and UCL studying broad range of protein structures.

Research activity codes: 1.5 RESOURCES AND INFRASTRUCTURE (UNDERPINNING)
Health categories: GENERIC HEALTH RELEVANCE
Title: ProCos: Protein co-regulation scores as a new resource for systematic and large-scale protein function annotation
Funder: Wellcome Trust

Abstract: We will determine protein co-regulation scores (ProCos) to aid the functional annotation of proteins. For this we will leverage the power of machine-learning to mine large amounts of public proteomics data. The results will be disseminated through STRING, the EBI’s PSICQUIC portal and on our website together with powerful, web-based analysis tools. We have previously shown that protein co-regulation is an accurate indicator for protein function, strongly outperforming associations derived from mRNA coexpression data. Our prototype analysis uncovered around 60,000 interactions between 5,000 human proteins. Since 2019 these are available to thousands of daily users of STRING in the form of a specially created protein co-regulation channel. We will expand this compendium by adding hundreds of experiments that have become publicly available recently. We will achieve comprehensive ProCos coverage of the human proteome and extend the approach to other species. Our prototype platform for ProCos-based protein function prediction (www.proteomeHD.net) will be improved and consolidated, in order to support biomedical research in an open, sustainable and permanent manner. We request resources to support the salary of one full-time researcher at the University of Edinburgh for three years, and to purchase a server for data processing and dissemination.

Lay abstract: The functions of thousands of human proteins are unknown or poorly understood. Since no protein functions in isolation, it is also important to understand which proteins work together in a cell - and why they fail to do so in a disease. We developed an approach to address these questions. It bases on the fact that the abundance of proteins differs slightly between biological conditions. Over hundreds of different conditions, patterns emerge that are characteristic for the cellular function of a protein. Using machine-learning we can capture these patterns in high-quality mass spectrometry data, and assign uncharacterised proteins to known biological processes. Our pilot study only covered a subset of human proteins. Now, we will expand the approach to the whole proteome and to other species. As part of the STRING service, our resource will directly assist over 5,000 researchers every day to determine the function of their target proteins.

Research activity codes: 1.5 RESOURCES AND INFRASTRUCTURE (UNDERPINNING)
Health categories: GENERIC HEALTH RELEVANCE
Title: 'In Theatre'
Funder: Wellcome Trust

Abstract: Research has indicated that the future use of emerging, data-driven, technologies in surgery is dependent on ensuring these technologies are designed with, and for, the public and patients. Accordingly, we propose ‘In Theatre’- an interactive public installation and arts-based community engagement programme. This will use arts-based approaches to discuss challenging topics and break down barriers to engagement in a two stage project. Stage 1: Deep listening – This will use societally engaged arts and creative practice to explore concepts of robotics and A.I. in surgery to better understand the public’s concerns, identify what they want to know more about and what they would like researchers to consider in future work. Learnings and outputs from this stage will inform the content, experience and overall design of the public installation. Stage 2: Installation – Working with The Liminal Space, experts in public engagement delivery, we will create a three-week pop-up installation which will help residents in Tower Hamlets build their own understanding of these technologies and shape how they should be developed. This intervention will also make a valuable ‘learning environment’ for clinicians and researchers to gain further insights into the relationship people have with surgical technology beyond the clinical environment.


Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE
Title: Border Crossings: Charity and voluntarism in Britain's mixed economy of health care since 1948
Funder: Wellcome Trust

Abstract: Whilst perceived as a centralised, statist service, the NHS allows scope for voluntary financial support of its institutions, and for private provision of services outside the NHS. This has taken several forms: teaching hospital endowments; pooled endowment funds for non-teaching hospitals; and voluntary fundraising for individual institutions. Voluntary sector provision of health care has also continued: several voluntary hospitals disclaimed by the state in 1948 continued in existence, and a number of NHS hospitals have transferred back into charitable ownership. These contributions to a public health service are little-known and our research is concerned with the distinctive contribution they make and the challenges they pose for policy. We therefore chart the scale, distribution and growth of these initiatives, as well as the niches which they occupy. We analyse how policy has been framed with reference to them – in other words how the balance between voluntary initiative and central planning has evolved over time – and we explore their role in innovation in the delivery of health and care, and their importance in engaging the public in supporting their local services. Overall this research programme provides novel insights into the debatable borderlands between statutory and voluntary initiative.

Lay abstract: The NHS is famously a state-run health service, yet it has always made space for some charitable activities. These include some of the wealthiest charities in the country. The boundaries between state-run and charitably-run activities have shifted over the decades. What difference do these unusual charitable actors make, and how should policy manage them in the future? We will study how health policy has understood, and sought to change, the role of charities in the NHS. We will analyse the amount and distribution of charitable fundraising for NHS charities. Finally, we will study a selection of NHS charities, both historically, and in the present day. Together, we will develop a collective account of the effects, both positive and problematic, of these organisations in the UK health system. This will change understandings of the NHS, and inform suggestions for the future of charities in the NHS.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE
Title: Alternative access schemes for pharmaceuticals: bypassing scrutiny?
Funder: Wellcome Trust

Abstract: High prices of new medicines have led most European countries to set up health technology assessment (HTA): evidence-based processes that evaluate whether a drug’s benefits outweigh its costs, before it receives public funding. Yet, increasingly, expensive new medicines bypass this scrutiny. Instead, they enter health systems through alternative access schemes: diverse provisions that provide patients with access to treatment that are not routinely funded – for example the English Cancer Drugs Fund or individual patient funding requests. As a result, some drugs, including notably expensive cancer medicines, are prescribed even though they never demonstrated their “value for money” in HTA, reaching up to 5% of pharmaceutical budgets in some countries. Despite evidence of their growing significance, there is little systematic research on alternative access schemes. This project seeks to understand why alternative access schemes emerged, how decisions in these schemes are made, and what the policy implications are for patients and public finances. It systematises knowledge of this emerging phenomenon by providing an overview of alternative access schemes in Europe and a detailed analysis of their political economy in selected health systems. It will contribute to debates on affordability of new medicines.

Lay abstract: Who decides if new drugs are funded by the NHS, and based on what criteria? Many countries set up specialized “health technology assessment” (HTA) agencies to make recommendations on new drugs’ cost to the health systems and benefit to patients. In recent years, however, expensive drugs have been funded despite failing HTA or never being evaluated, via alternative access schemes, such as the Cancer Drugs Fund in England. Even though spending on these schemes is growing, little is known about them. I will study why alternative access schemes emerged, how decisions in them are made, and what this means for patients and public finances. I will provide an overview of alternative access schemes in Europe and a detailed analysis of the procedures and criteria they use in selected countries. The project will contribute to debates on affordability of new medicines.

Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE