It is likely that nursing homes in the UK will become clusters in their communities for the worst clinical manifestations of COVID-19. Since all nursing home residents are at substantial risk, nursing home care staff need to know what residents would want to happen should they become infected with COVID-19. The aim of this project is to develop and evaluate an online advance care planning (ACP) COVID-centric intervention for nursing homes during a COVID-19 outbreak to improve care at the end of life. Findings from a rapid review of available resources will be used to develop an online ACP COVID-centric intervention for training nursing home staff and providing an information resource to family carers. Nine nursing homes will participate in the project with three nursing homes located in Northern Ireland, England, and Scotland. We will collect data from up to 54 family carers and 45 nursing home staff. Expected outcomes: (a) enhanced knowledge of conducting end of life discussions during COVID distancing measures; (b) improved ability for staff to assess resident needs and respond more appropriately in relation to ACP; (c) enhanced decision making among family members regarding resident care; (d) improved communication between staff and family carers regarding their relatives health care needs; (e) increased evidence of completed ACPs; (f) development of open source online ACP COVID-centric resources for use by nursing homes.

Background: Rare diseases are serious, lifelong conditions that have no cure. Rare diseases affect one in every 17 persons. Approximately one-third of children with a rare disease will die before their 5th birthday. In the UK and Ireland as many people live with rare diseases as live with diabetes, yet rare diseases receive much less recognition and support. More than 110,000 people across Northern Ireland are affected by a rare disease. Helping people living with a rare disease is an urgent priority for policymakers in the UK. However, less focus has been placed on people who provide care for those diagnosed with a rare disease. Many carers look after someone(s) 24/7 with little or no respite. Rare diseases can run in families so carers may be supporting more than one person. Unnecessary stress on carers can lead to poor mental and physical health, making it harder for them to help others. Patients and carers face difficulties when: a) seeking a rare disease diagnosis (in NI the average wait time for an accurate diagnosis is 5 years); b) looking for an effective treatment (90% or more rare diseases have no approved therapy or medication); or c) searching for information (many doctors do not know about individual rare diseases and say that finding accurate information is problematic). Carers for people with a rare disease may experience high out-of-pocket costs for heating or medical equipment etc. Some carers cannot regularly work beyond their caring role. Carers often report geographical and / or social isolation. Meeting other carers can provide support and facilitate sharing experiences and information, but meeting in person can be challenging. While online resources can help, few are developed from strong evidence or with input from carers. Rare disease support groups can help, but they are underfunded and typically focus on people diagnosed with a rare disease. In response to requests from our local rare disease community, we will work with carers to develop an online support tool for NI. Project Overview: Working with carers of people with a rare disease, we will co-develop an online Rare Disease Carer Support Tool in Northern Ireland (RD-CaST-NI). This will help support carers, increasing their well-being and resilience. RD_CaST-NI will signpost carers to relevant services and help strengthen their voice, highlighting good practices and unmet needs. Together we will provide robust evidence to support changes to policy and practice to better support carers across NI. We will partner with a wide range of rare disease carers to ensure this RD_CaST-NI tool meets the needs of carers of children, adults, and / or multiple family members with rare disease(s). Building on previous research, we will work with carers to help design the resource and host a workshop to learn what carers would find helpful within this RD_CaST-NI tool. We will interview carers to hear relevant stories about their lives and what they want in this online resource to refine the tool. A range of videos with carers sharing their lived experiences about requested topics will be included. We will also create additional videos providing advice and signposting carers to supports and services. Different groups of carers will evaluate the tool as it develops and provide feedback to improve the next version. What we learn in this project will help inform the development of a dedicated carer element for the information hub proposed in the NI Department of Health rare disease action plan 22/23. We hope, if the tool proves useful, RD_CaST-NI will become a sustainable go-to resource to support carers of people with a rare disease across NI.

The Northern Ireland Longitudinal Study (NILS) is an important element in the ESRC data infrastructure for population and public health research in Northern Ireland and across the constituent countries of the UK. It has strategic relationships with the other UKCenLSs and, within Northern Ireland, with the Northern Ireland Statistics and Research Agency (NISRA), the Public Health Agency (PHA), and the Honest Broker Service (HBS). Its 28% sample, which combines census data with administrative data from the healthcard register, social care, and housing, will span the period 1981-2021 when the link to the 2021 Census is completed. This enables the description and analysis of changing populations in changing places, individual fortunes over the life course, household contexts, as well as progress between successive generations. The grant will fund, until 2025, the NILS Research Support Unit (NILS-RSU) which has the functions of maintaining a secure data laboratory for users to work on these data safely, of supporting users from project application to publication, of promoting NILS-based research to policymakers and the public, of seeking new users through the promotion of the NILS, and of encouraging research for the public benefit. A major highlight of our work programme will be testing, using and developing research around the 2021 Census link. The NILS-RSU will also seek to widen the social and educational base of the NILS in Northern Ireland through engaging with new stakeholders and growing its contribution to education. It will also encourage research using the NILS and the other UK longitudinal studies to contribute to national and international research agendas whilst developing new research partnerships in Northern Ireland.

There is great potential for understanding more about our society by making better use of data that already exists and by linking different datasets together. This could be undertaken more widely in the UK as in other parts of Europe such as Scandinavia. Using existing data is not only efficient and cheaper than collecting new data, but it can also provide a powerful means of better understanding how society works and what action is needed to tackle a wide range of social issues, thereby guiding the development, implementation and evaluation of policy. This can be achieved in a way that ensures that the public have the maximum confidence that their data are being used appropriately and that the safeguards of these data meet the highest international standards. To this end, four Administrative Data Research Centres- ARDC for coordinating and undertaking record linkage are being setup in each of the four countries of the UK. In Northern Ireland the two universities and NISRA, the local governmental statistics agency, will come together to promote and facilitate record linkage here. This will have two aspects; an independent body (trusted third party) for linking different datasets and a separate secure environment (the NI-ADRC) for undertaking analyses of the data. The process of record linkage ensures that (i) the trusted third party never see the administrative information about individuals and (ii) that the ADRC never have sight of personal information such as names or addresses. All of these processes will be overseen by a UK Governing Board who report to Parliament, probably via the UK Statistics Authority. The public will be represented at all levels. An Administrative Data Service will coordinate ADRCs activities and provide a single source of information for enquiries and information. The NI-ADRC will be led by an academic Director; NISRA will provide the secure environment and oversee its operation with full auditing of all data access and processing. They will also operate the trusted third party linkage. The NI-ADRC will employ two experienced academics to provide assistance and technical support to users of these data who will have undergone accreditation training and access the anonymous data only in a secure environment; all statistical and written outputs will be further scrutinised before release. A major task for the NI- ADRCT will be to increase the public awareness of and confidence in the safe linking of administrative records and will therefore appoint a senior Public Engagement and Communications Officer. The NI- ADRC will also raise the potential for and benefits of record linkage amongst the academic fraternity, data custodians and Government Agencies. The formation of NI-ADRC should bring about a closer working relationship between the generators and custodians of administrative data in governmental and other agencies, the potential users of these data, and the policy makers who should benefit from the analyses of these linked data; this interrelationship will be underpinned by a series of seminars and meetings and other opportunities for interaction and exchange. Early in the first year the ADRC will start to cement relationships with the various data custodians and governmental agencies and (i) catalogue what data is currently available for linkage (ii) negotiate, with the ADS, the production of the metadata and the informal advice and support that will be essential for understanding the processes behind the data and of the database structures, and (iii) over a longer period increase the range and number of datasets available for linkage within NI and the wider UK context, and to encourage the passage of enabling legislation. Building relationships and joint strategies with the other ADRCs and the ADS, and with UK groups with interests in similar datasets and/or methodological approaches will be a major priority from the outset.

In Northern Ireland, an average person does over 80% of their journeys by car. This is very high compared to other parts of the UK, where 63% of journeys are made by car, and in Ireland, where the figure is just over 50%. Belfast is also one of the most congested cities in the UK. These problems are because too many people are driving too often. Being too reliant on our cars to get around leads to many detrimental impacts. For example, we walk and cycle less, our air quality worsens, and the number of road traffic collisions increases. It is, therefore, a growing issue in public health with more and more cities looking for solutions to help reduce our reliance on cars. However, solutions to such a problem are not simple as there are many different groups involved in or affected by the transport system. If we are to find policies and programmes that help reduce car reliance long term, then these groups must work together to solve the problem. Our project aims to co-develop sustainable and scalable policies and programmes that reduce the reliance on cars in Belfast. Our project is organised into 3 workstreams: 1) understanding the multiple layers of the system that influence the reliance on cars in Belfast; 2) exploring the current evidence and knowledge of what has worked in other cities; 3) developing possible policies and programmes with key organisations to reduce car use. Our policies and programmes are aimed at citizens who use their car for work, school drop-off, leisure and other activities in Belfast. But other road users will also directly benefit from less cars on the road, through less air pollution and fewer road traffic collisions. The general population will also benefit from cleaner air, less noise, and potential positive impacts on climate change. Our research includes the following steps: 1. We will undertake a survey using a technique known as Network Analysis to help us understand the network of stakeholders involved in the development, implementation and evaluation of programmes and policies to reduce car dependency and how they might best work together. 2. We will undertake a survey with road users in Belfast to evaluate and rank the importance of influences on car dependency and on alternative travel modes, using a technique known as Discrete Choice Experiments. 3. To develop agreement among stakeholders about the nature, ordering and relationships between programmes and policies of different organisations to reduce car dependency, we will develop visual diagrams of the 'system' of the various aspects that affect car dependency, using a technique known as causal loop diagrams. 4. We will host workshops with local citizens to 'sense-check' promising intervention approaches and policies to explore and ensure the acceptability, utility, affordability, feasibility and sustainability of new initiatives. Possible policies and programmes may include, for example: improved public transport, with the introduction of a new rapid transit system; investment in urban greenways to increase walking and cycling journeys; expanding the car-free areas of the city centre; extension of 'park and ride' and 'park and stride' facilities at the edge of the city. Our work will have the following outputs: 1. Identification of stakeholders influencing car dependency in Belfast and their relationships. 2. A review of the evidence for actions to reduce car dependency, leading to identification of possible new interventions and policies to be considered by stakeholders. 3. A map identifying ongoing and planned policies and interventions and their potential interplay. 4. A suite of potential co-ordinated policies and interventions 'tested' (in terms of acceptability and feasibility) with road users and local citizens. 5. A consensual understanding of the evidence provided and implications for reducing car dependency in Belfast. 6. A roadmap for multi-sectoral action to reduce car dependency in Belfast.