The SAIL Dementia e-Cohort is a population-based electronic cohort (e-cohort) containing health-related information on people with and without diagnosed dementia.

By applying coding algorithms to linked routinely-collected datasets, a novel Dementia Platform UK (DPUK) cohort was developed to maximise generalisability and utility for a broad range of research questions and methodologies. It aims to minimise duplication of effort, increase reproducibility, reduce costs, and allow a broader range of researchers to apply to use SAIL data.

Legacy Pathology Test Results and all Radiology reports for Wales. Data coverage differs by geography: 2012 for Swansea (ABMU) 2017 for Newport (AB) 2012 for North Wales (BC) 2007 for Cwm Taf 2015/16 for Cardiff (CV) 2014 for West Wales (HD)

Administrative information about individuals in Wales that use NHS services; such as address and practice registration history. It replaced the NHS Wales Administrative Register (NHSAR) in 2009.

Data drawn from GP practices via Exeter System.

This dataset provides linkage from anonymous individual to anonymous residences, thus enable to group households of individuals.

A single-view version of WDS (called PER_RESIDENCE_GPREG) provided by Digital Health and Care Wales (DHCW) superseded the previous three-view version WDS in September 2022. SAIL produces cleaned versions of these views. The cleaned versions of the new single-view WDS are called WDSD_CLEAN_AR_PERS and WDSD_CLEAN_GEO_RALF.

Associated Media

https://saildatabank.com/about-us/overview/ , https://popdatasci.swan.ac.uk/centres-of-excellence/sail/ , https://saildatabank.com/

The COVID Symptom Tracker (https://covid.joinzoe.com/) mobile application was designed by doctors and scientists at King's College London, Guys and St Thomas’ Hospitals working in partnership with ZOE Global Ltd – a health science company.

This research is led by Dr Tim Spector, professor of genetic epidemiology at King’s College London and director of TwinsUK a scientific study of 15,000 identical and non-identical twins, which has been running for nearly three decades.

The dataset schema includes:

Demographic Information (Year of Birth, Gender, Height, Weight, Postcode) Health Screening Questions (Activity, Heart Disease, Diabetes, Lung Disease, Smoking Status, Kidney Disease, Chemotherapy, Immunosuppressants, Corticosteroids, Blood Pressure Medications, Previous COVID, COVID Symptoms, Needs Help, Housebound Problems, Help Availability, Mobility Aid) COVID Testing Conducted How You Feel? Symptom Description Location Information (Home, Hospital, Back From Hospital) Treatment Received The data is hosted within the SAIL Databank, a trusted research environment facilitating remote access to health, social care, and administrative data for various national organisations.

The process for requesting access to the data is dependent on your use case. SAIL is currently expediting all requests that feed directly into the response to the COVID-19 national emergency, and therefore requests from NHS or Government institutions, or organisations working alongside such care providers and policymakers to feed intelligence directly back into the national response, are being expedited with a ~48-hour governance turnaround for such applications once made. Please make enquiries using the link at the bottom of the page which will go the SAIL Databank team, or to Chris Orton at c.orton@swansea.ac.uk

SAIL is welcoming requests from other organisations and for longer-term academic study on the dataset, but please note if this is not directly relevant to the emergency research being carried out which directly interfaces with national responding agencies, there may be an access delay whilst priority use cases are serviced.

Please note: the CVST dataset in SAIL has not been updated since 01/11/2023.

This dataset requires additional governance approvals from the data provider before data can be provisioned to a SAIL project.

Please note this is a legacy dataset where the latest available data was updated in 2018. It is advised you refer to the live dataset WRRS (Welsh Results Reports Service) for post-2018 coverage.

Pathology Test Results and all Radiology reports for Wales. Data coverage differs by geography:

2012 for Swansea (ABMU)

2017 for Newport (AB)

2012 for North Wales (BC)

2007 for Cwm Taf

2015/16 for Cardiff (CV)

2014 for West Wales (HD)

This qualitative sub-study was embedded in the broader data linkage OSCAR study which aimed to assess the health impact of working during the COVID-19 pandemic upon domiciliary care workers (DCWs) in Wales, UK. The qualitative study aimed to explore care worker experiences during the pandemic. We explored factors that may have varied the risk of exposure to COVID-19 as well as adverse health and wellbeing outcomes. Registered DCWs working in Wales were invited to take part in a semi-structured telephone interview. In total, 24 DCWs were interviewed between February and July 2021. Emergent themes were identified through a process of inductive analysis using thematic coding. Several emergent themes related to risk of exposure to COVID-19. General changes to the role of the DCW during the course of the pandemic were identified. Practical challenges for DCWs in the workplace were also reported. These included reports of staff shortages, clients and families not following safety procedures, initial shortages of personal protective equipment (PPE), problems with standard use PPE, client difficulty with PPE and the management of rapid antigen testing. A general lack of government/employer preparation for a pandemic was described. This included the reorganisation of staff clients and services, sub-optimal information for many DCWs, COVID-19 training and the need for improved practical instruction and limited official standard risk assessments specifically for DCWs. Pressures to attend work and DCW’s perception of COVID-19 risk and vaccination were reported.

Domiciliary Care Workers (DCWs) are employed in both public and private sectors to support adults at home. The support they provide varies but often includes personal care, which demands close contact between care worker and the person being supported. Since the start of the COVID-19 pandemic, people working across the care sectors in England and Wales have experienced higher rates of death involving COVID-19 infection. Social care workers, in both residential and domiciliary care settings, have been particularly badly affected, with rates of death involving COVID-19 approximately double that for health care workers.

We do not fully understand the full impact on domiciliary care worker mortality, how COVID-19 has affected worker health more broadly, and the risk factors which contribute to these. Existing evidence on deaths from the ONS relies on occupational classification. However, for many individuals reported as dying with some COVID-19 involvement, information on occupation is missing (18% and 40% missing for males and females respectively). The impact of COVID-19 on the health of domiciliary care workers (DCWs) is therefore likely to be considerable, including on COVID-19 infection itself, mental health, and respiratory illnesses. We aim to generate rapid high-quality evidence based on the views of care workers and by linking care workers' registration data to routine health data. We can use this information to inform public health interventions for safer working practice and additional support for care workers.

Our study will use a combination of research methods. We will use existing administrative data involving carer professional registration records as well as health care records. Our analysis of these data will be guided in part by qualitative interviews that we will conduct with domiciliary care workers in Wales. The interviews will address the experiences of care workers during the course of the pandemic.

Registration data for care workers in Wales will be securely transferred from the regulatory body, Social Care Wales (SCW) to the Secured Anonymised Information Linkage (SAIL) Databank at Swansea University. These data will be combined with anonymised health records made available from the SAIL databank. Information which could be used to identify individual care workers will be removed in this process. We expect that this will create a research database of all domiciliary care workers in Wales, approximately 17,000 individuals. From this group we will also identify about 30 care workers to be approached via SCW to take part in a qualitative interview. The interview sample will be chosen so that it includes workers from a variety of backgrounds.

In our analysis, we will describe the socio-demographic characteristics of the group of care workers in the research database, for example, their average age. We will establish the number of care workers with both suspected and confirmed COVID-19 infection. Will explore how infection with COVID-19 has impacted on key health outcomes, including whether workers were admitted to hospital or died. We will also explore the health of care workers before and during COVID-19 pandemic. We will use the information gained from interviews with care workers to guide the way we analyse the health records of the care workers. Finally, we will examine how well the results from our analysis of care workers in...