NIHRDataInsights/HRCSData huggingface dataset:
Title: Developing a toolkit to support health professionals in building community-based group exercise programmes for older people with chronic conditions
Funder: Economic and Social Research Council

Abstract: The aim of the present project is to develop a freely available product-a toolkit or blueprint-with online resources for health professionals to develop and scale non-hospital- (community-) based group programmes of exercise for older people with chronic conditions. This aim will be met via the following key objectives, which are to: (a) interview participants from our previous NIHR-funded trial into group exercise for older adults with hip osteoarthritis (b) interview participants from the Voice network (c) interview key health professionals and stakeholders about their experiences of providing exercise programmes for older adults (d) work with a dedicated web developer to build out the online toolkit (e) test iterations of the toolkit with key end users (i.e., health professionals) (f) refine and modify the toolkit in response to feedback from end user testing (g) scope the content of a service to complement the online toolkit

Lay abstract: As the NHS waiting list soars above six million people, with treatment wait times over two years, older people with chronic conditions face worsening symptoms, increased use of medications, more complicated surgeries with slower recovery, reduced quality of life, and loss of independence. As part of its plans to tackle this crisis, the NHS promotes exercise as a "miracle cure" for arresting the progress of disease and helping disease management and recovery. However, current plans promoting individual, home-based exercise, as well as on-site hospital-based programmes of delivery, have met with only limited success, and face problems of decreased space, capacity, clinician time, as well as lack of knowledge and expertise with regard to effective behaviour change. I am proposing to develop and promote a suite of materials and online resources-a toolkit or blueprint-to support health professionals in their development and scaling of non-hospital- (community-) based group exercise programmes for older people with chronic conditions. Key benefits for older people include arresting disease, delaying disease onset, reducing pain and need for medication, avoiding surgery, and leading a normal life. My long-term ambition is to develop a go-to resource for health professionals to use to manage a range of conditions associated with older people, for which building sustainable physical activity is an aim. If successful, our innovation has potential for substantial reach and impact, changing the way we manage (and improve the lives of older people living with) chronic conditions, creating cost savings for health systems world-wide.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: GENERIC HEALTH RELEVANCE
Title: Active Ageing Environments
Funder: Economic and Social Research Council

Abstract: Developing physical activity opportunities for healthy aging embedded in new housing and commercial developments

Lay abstract: "A decent home, a job and friends are more important to good health than the NHS." (Duncan Selbie, Chief Executive, Public Health England) Physical activity has been engineered out of our lives; mechanization, automation and digitization have left us sedentary, indoors and tied to our screens. Physical inactivity adversely effects health, mental wellbeing and quality of life at all ages and across all sectors of society. As our population ages the cumulative effects of this lack of physical activity, movement and connection with the outdoors is severely detrimental to average healthy life expectancy. Midlife and older adults represent the most inactive portion of the population. If people have appropriate information, opportunities and tools at the right time they have higher levels of activation, tend to experience better health and engage in healthier behaviours. The built environment impacts our health and wellbeing as it affords opportunities to be physically active in the spaces between and around buildings. Good design creates physical activity opportunities through access to green spaces, walking and cycling connections and links to community facilities. The national housing shortage will be met by developers driven by profit, delivering thousands of houses in the same mould. We intend to show that the return on investment in better design, will increase their profits while also improving health. By creating better, more desirable places to live, the value of land and houses increases. By embedding opportunities for physical activity at the design stage, creating active aging environments, communities grow and grow healthier.

Research activity codes: 1.2 PSYCHOLOGICAL AND SOCIOECONOMIC PROCESSES
Health categories: GENERIC HEALTH RELEVANCE
Title: Precision medicine in the home for real-time zero-effort monitoring of health
Funder: Economic and Social Research Council

Abstract: We are developing technology that is able to monitor the health of an individual in the home setting. We aim to 1) Understand the barriers to Adoption from users & stakeholders, 2) Understand how the data/action loop can be closed (biomarker detection to clinical action), and 3) how these impact core technology design (Compatibility, technological embodiment and interface). We will seek to develop strategies to promote adoption and active engagement. WP1 Human factors (Building understanding of end-users) - Despite the potential benefits of a home/toilet-based precision health system, there are considerable non-technical barriers that must be resolved, targeted to the elderly. These are primarily acceptance, adoption and engagement. We will research barriers to adoption through market analysis and primary research. WP2 Stakeholder Landscape (who, what and how are they linked) - We will map the landscape of stakeholders with our partners and conduct market research. We will explore sensitivities at the governmental and legislative level. WP3 Pilot Study (toilet-based biosensor feedback) - We wish to gain insight into how users interact with and respond to a toilet-based system for personalised precision medicine. Volunteers will be recruited and will be provided a toilet biosensor pack to install in their home.

Lay abstract: Our existing approach to healthcare is reactive and based on limited physiological information, collected months, years or even decades apart. Digital health technologies propose to solve this but often require individuals to actively administer self-testing. This is a daunting prospect for any individual, particularly for the elderly. We propose to overcome this with the development of a toilet-based precision healthcare platform deployed in the home to measure urinary biomarkers of disease. It is zero-effort taking samples autonomously without user intervention and can measure biomolecular signatures of health from urine over time. The aim is to take a personalised medicine approach to detect disease early at the population scale. We are developing methods to detect biomarkers of disease. There are significant, largely non-technical, barriers to the adoption of 'big-tech' precision health solutions by the general population, which we will explore and investigate strategies to solve as part of this project: we will research the barriers to adoption by users and stakeholders, how the molecular data generated can and should be used, as well as conducting pilot projects focussed on the user interaction and engagement elements of a home-based system.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: GENERIC HEALTH RELEVANCE
Title: Machine learning for causal inference: developing modern tools for personalised optimal treatments
Funder: Wellcome Trust

Abstract: Medical and social scientists evaluating the effects of medicines or social policies (treatments) are interested in finding optimal treatment regimes, as well as identifying the best time for treatment initiation, changes or discontinuation. To achieve such tailored interventions, we need a step-change in our understanding of treatment-effect heterogeneity, which potentially depends on many factors. Reliable inference is this area is notoriously challenging, because these are poorly-understood relationships involving a large number of confounders, effect modifiers and missing data. This has triggered an interest in machine-learning to help obtain models which adapt to accurately capture the relationships of interest. However, quantifying uncertainty is very difficult since machine learning is primarily focused on prediction. Moreover, machine-learning estimates suffer from regularisation bias. Nevertheless, under certain assumptions, doubly-robust estimators can be combined with machine-learning, to obtain consistent estimates with valid confidence intervals (with the bias vanishing faster than for simple estimators). This fellowship aims to exploit this potential, by extending existing doubly-robust estimators to use machine-learning estimation in obtaining valid inferences, by (1) choosing correctly-specified confounder models, optimised for estimating the true causal effects, (2) appropriately accounting for the observation process, (3) identifying the important effect-modifiers, and (4) finding optimal treatment regimes.

Lay abstract: Scientists evaluating the effects of medicines or social policies (collectively referred to as treatments) are interested in identifying treatment combinations that maximise benefits as well as determine the best time for treatment initiation, changes or discontinuation. Such tailored interventions depend on genetic, demographic, environmental and lifestyle factors, treatment history and co-morbidities. Machine-learning — automated algorithms that learn from the data— bring a novel opportunity to answer these questions. How to handle the large number of variables involved, make predictions and take data-driven decisions, is a complex task. By successfully addressing these challenges, I will deliver methods that effectively harness machine-learning to obtain treatment effects and individualised predictions from a what-if (so-called causal) perspective, allowing us to obtain information about each individual's likely outcome if they follow a particular treatment. Methods for finding optimal treatments, targeted to maximise health benefits and minimise exposure to unnecessary treatments will also be provided.

Research activity codes: 2.5 RESEARCH DESIGN AND METHODOLOGIES (AETIOLOGY)
Health categories: GENERIC HEALTH RELEVANCE
Title: Child Growth Screening in Tower Hamlets: a Qualitative Study ( J Freer)
Funder: Barts Charity

Abstract: Poor growth in early childhood can be due to underlying medical causes or socioeconomic disadvantage, and is associated with suboptimal long-term outcomes. Growth screening of pre-school age children would enable targeted education and social interventions to modify these outcomes. An existing study (Child Growth and Development in East London; CGEL) is therefore piloting a growth screening programme in Tower Hamlets. Currently there is little published qualitative data on height screening in high-income settings. The overall aim of my proposed sub-study is to build on our understanding of the perceptions and motivations of caregivers and health visitors in relation to children?s linear growth and population growth screening of pre-school age children in Tower Hamlets. I will invite two groups of 8 caregivers and a group of 8 health visitors to take part in focus groups at two timepoints, selected from CGEL participants. This study will use constructivist grounded theory methods to explore: 1) caregivers? perceptions of height/linear growth and of growth screening of pre-school age children in Tower Hamlets; and 2) current challenges of growth monitoring experienced by health visitors and barriers/facilitators in relation to a future growth screening programme. I will employ thematic analysis and use open coding to conceptualise and categorise data in order that salient categories of a higher order and relationships between those categories emerge. I will disseminate findings through presentation at a conference, in 1-2 peer-reviewed manuscripts, via the Child Growth Foundation, local patient groups and, if relevant, to the National Screening Committee. By gaining a greater understanding of the phenomenology of caregivers? and health visitors? perceptions of growth and growth screening, this study is positioned to provide valuable information to support decision-making bodies such as NICE and the National Screening Committee when considering child growth screening.


Research activity codes: 2.1 BIOLOGICAL AND ENDOGENOUS FACTORS;7.1 INDIVIDUAL CARE NEEDS;7.4 RESOURCES AND INFRASTRUCTURE (DISEASE MANAGEMENT)
Health categories: GENERIC HEALTH RELEVANCE
Title: 'Blockchain everything': Revolutionising the Delivery of Health and Welfare Services in the UK
Funder: Wellcome Trust

Abstract: My project will examine the potential use of blockchain technology in the delivery of public services, particularly in the areas of healthcare and welfare in Britain. A blockchain is a type of database that functions as a digital ledger, a way of recording transactions in a permanent, transparent, and irreversible format. Although blockchain technology has existed for decades, its real-world applications have only recently garnered attention from policy makers and politicians. Amidst booming interest in perhaps the most famous financial blockchain – Bitcoin – my project will look at how this technology could transform the nature and provision of healthcare and welfare services in Britain. The type of information recorded and secured on blockchains is not restricted to financial transactions. It can relate to patient records, the movement of resources in a supply chain, legal documents, and an endless array of other information. As such, it has potential to revolutionise the way organisations utilise and manage data, eliminating problems like fraud and human error in the management of data. The project will examine these potential applications by interviewing key stakeholders, including academics, computer scientists and senior administrators in the NHS and the DWP.

Lay abstract: My project looks at how blockchain technology can be applied in the delivery of healthcare and welfare services in the UK. Blockchains are a computerised way of recording and storing information in a secure and permanent way. This technology has existed for decades but it has only recently attracted the attention of governments and the wider public, especially with the rise of famous financial blockchains like Bitcoin. The project will outline the key components of blockchain technology for a lay reader. It will present the views of computer technologists, policy makers, businesses and NHS and DWP administrators. It will then evaluate the benefits and risks of using blockchain technology in public services to solve problems like identify verification, fraud, the organisation of patient data and in the management of supply chains. It will present this research in the form of an easily readable POST note.

Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE
Title: Safety netting in language discordant GP consultations: is it lost in translation? An exploratory qualitative study of the perceptions of community members who use interpreters to consult with their GP.
Funder: Barts Charity

Abstract: ?Safety Netting? is a well-recognised strategy to manage risk and uncertainty in clinical consultations, particularly in primary care where patients may be seen early on in their illness journey. Safety netting may contribute to earlier diagnosis of serious disease, however research has described how patients do not always have insight into or understand their GP?s safety netting strategy. Research describes safety-netting as failing when ?it is not heard or understood?. In Tower Hamlets, around 35% of adults use a main language other than English. Language barriers contribute to health inequalities, and the presence of an interpreter in clinical interactions is important in mitigating these. Little is known as to how safety netting performs in cross-cultural consultation. The aim of this study is to explore perceptions of safety-netting of members of the community whose level of English is such that they need to use interpreters for consultations with their GP. This is exploratory, community-based work that aims to inform future work investigating safety netting in language discordant consultation in clinical settings. It has the potential to influence both primary and secondary care. Study participants will be people who use interpreters to consult with their GP. The study will explore the following questions: ? What are participants? perceptions of the concept of safety netting in GP consultations? ? What are participants' experiences of receiving safety netting advice? ? What do participants consider to be priorities for research into safety netting and other cross-cultural communication in primary care? Qualitative methods (focus groups and semi-structured interviews) will be used. Content will be transcribed and translated for thematic analysis. Anticipated benefits include an improved understanding of the awareness of safety netting in those who use an interpreter to access healthcare and identification of priorities for future clinical studies in safety in language discordant consultation.


Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;7.3 MANAGEMENT AND DECISION MAKING
Health categories: GENERIC HEALTH RELEVANCE
Title: Community care integration for older people with advancing frailty nearing end of life: Development and dissemination of an impact toolkit
Funder: Marie Curie

Abstract: Older people living with advancing frailty are nearing the end of life and yet this largely invisible population’s palliative care needs are often either unknown or unmet. Palliative care has historically focussed on malignant single conditions, only recently shifting attention to the palliative care needs of older people with advancing frailty and multiple long-term conditions. New evidence from the PALLUP study has identified the current lack of the right tools and service configurations to recognise and address these needs, where recent legal and policy shifts to more integrated working have not yet been matched with guidance for local implementation of integrated practices. Consequently, older people, their families, and care providers may be unsure about when and how to get help, resulting in many older people living with advancing frailty, who want to be at home and prioritize quality of life, spending their last year undergoing suboptimal treatments. The PALLUP study has conducted a consensus exercise with multisector stakeholders and video interviews with older people with advancing frailty and their family carers, contributing to a new toolkit to support multidisciplinary care professionals to generate ideas and actions for developing more integrated working practices. The toolkit will be trialled and evaluated for this impact project, to identify core components for wider application, to be launched and used nationally. This will coincide with the release of a new policy briefing outlining the current state of evidence and policy in relation to the provision of community palliative care to older people with advancing frailty.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE
Title: No Barriers Here© for LGBTQ+ people
Funder: Marie Curie

Abstract: No Barriers Here© is a unique and innovative approach to advance care planning for people who are traditionally underserved accessing palliative care. No Barriers Here© was originally co-produced in 2020 by The Mary Stevens Hospice and people with learning disabilities and explores the use of art-based methods to support conversations about death and dying. No Barriers Here© challenged misconceptions around advance care planning with people with learning disabilities. It supports the use of art based methods in palliative care to shape rich conversations within communities and challenge inequity.


Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE
Title: Child and young person advance care plan guide for professionals
Funder: Marie Curie

Abstract: The Child and Young Person Advance care plan (CYPACP) Collaborative have recently revised and updated the CYPACP (Version 5) to incorporate new evidence and published guidance regarding ACP (NICE 2016, NHS 2022). Supplementary guidance is needed to sit alongside the CYPACP to support professionals in how to have conversations with children, young people and their parents and how to complete the ACP. We aim to develop a guide that will help professionals to confidently undertake ACP, to initiate conversations and complete a written document. The purpose of the guide is to ensure professionals understand the process of advance care planning and to promote ACP so that it is accessible and meaningful to children, young people and their parents and they are better able to make treatment and care decisions. The guide will be informed by current research with themed sections that will provide a framework for how to engage with children, young people and parents, in the process of advance care planning. It will include supplementary material outlining how to complete the ACP and a factsheet of how professionals can engage in ACP from junior healthcare staff to specialists. Scenarios and vignettes will be used to provide ‘real’ examples of practice and the guide will offer signposts to key resources. The hope is that the implementation and dissemination of the guide will increase meaningful engagement and improve the experience of ACP for professionals, children, young people and parents. """


Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE
Title: Health Emergencies: Evidence Brief for Policy
Funder: Wellcome Trust

Abstract: An evidence brief for policy would be developed for country teams/Emergency Division working in concert with EVIPNet. Following identification of health priority issues, the project would: * develop searchable research questions and search strategies. Evidence will be retrieved, mapped and appraised for quality, and examined for local applicability. In this way the project will be fully relevant to local contexts and support the WHO values capacity building and empowerment. * deliver a summary of packaged, relevant information i.e. an evidence brief for policy, to frame the policy priority issues, outline the evidence and the important governance, financial and delivery considerations. * convene a deliberative dialogue for a fully collaborative process. * support policy choice and implementation. * allow for monitoring and evaluation.

Lay abstract: A programme manager for the Emergencies division at the WHO Europe approached the EVIPNet (Evidence-Informed Policy Network) to explore a strengthened partnership using K2P (Knowledge to Policy) tools and evidence briefs for policy. This partnership would be launched to coincide with the WHO's new biennium for programmes. I would fulfil the role of a Wellcome Trust Fellow, working with in-country teams, EVIPNet and other WHO representatives to develop an evidence informed policy brief in line with this new partnership. In addition to providing an evidence informed policy brief and accompanying deliberative dialogue, this project could help shift understanding of K2P work from an abstract entity, to the development of a useful tool for impact in-country. The tools would also demonstrate value for the K2P approach amongst partner countries, but also within the WHO generally.

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