The Maternity Indicators Data Set captures data relating to the woman at initial assessment and to mother and baby (or babies) for all births. This relates to initial assessment and birth activity undertaken in Wales only

Attendance and clinical information for all general practice interactions: includes patients symptoms, investigations, diagnoses, prescribed medication and referrals to tertiary care.

This dataset covers 83% of the population of Wales and 80% of GP practices in Wales. It is linkable with anonymised fields for individuals and GPs to other datasets, including bespoke project specific cohorts. Each GP practice uses a clinical information system to maintain an electronic health record for each of their patients; capturing the signs, symptoms, test results, diagnoses, prescribed treatment, referrals for specialist treatment and social aspects relating to the patients home environment.

The majority of the data is entered by the clinician during the patient consultation. Test results are electronically transferred from secondary care systems.

There are no standard rules for recording data within primary care clinical information systems. Therefore, each individual clinician can record information in their own way. The majority use Read Code Terminology, however, sometimes this is applied behind the scenes by the clinical system and sometimes local codes are used. Read codes are not as precise as ICD 10 or OPCS codes.

Coding standards have been agreed on for conditions monitored by the QOF (Quality Outcomes Framework) returns. Since the implementation of QOF these conditions have been coded in a more consistent way.

Time coverage varies between each practice.

These files contain details on the creation of the Secure Anonymised Information Linkage (SAIL) databank dementia e-cohort (SAIL-DeC).

COVID-19 Consolidated Deaths dataset. Similar to the usual Annual deaths extract (SAIL Databank), except this dataset contains additional information with relevance to deaths where Covid-19 is attributable.

ObjectivesThe study aimed to assess if specialised healthcare service interventions in Wales benefit the population equitably in work commissioned by the Welsh Health Specialised Services Committee (WHSSC).ApproachThe study utilised anonymised individual-level, population-scale, routinely collected electronic health record (EHR) data held in the Secure Anonymised Information Linkage (SAIL) Databank to identify patients resident in Wales receiving specialist cardiac interventions. Measurement was undertaken of associated patient outcomes 2-years before and after the intervention (minus a 6-month clearance period on either side) by measuring events in primary care, hospital attendance, outpatient and emergency department. The analysis controlled for comorbidity (Charlson) and deprivation (Welsh Index of Multiple Deprivation), stratified by admission type (elective or emergency) and membership of top 5% post-intervention costs. Costs were estimated by multiplying events by mean person cost estimates.ResultsWe identified 5,999 percutaneous coronary interventions (PCI) and 1,640 coronary artery bypass graft (CABG) between 2014-06-01 to 2020-02-29. The ratio of emergency to elective interventions was 2.85 for PCI and 1.04 for CABG. In multivariate analysis significant associations were identified for comorbidity (OR = 1.52, CI = (1.01–2.27)), deprivation (OR = 1.34, CI = (1.03–1.76)) and rurality (OR = 0.81, CI = (0.70–0.95)) for PCI interventions, and comorbidity (OR = 1.47, CI = (1.10–1.98)) for CABG. Higher costs post-intervention were associated with increased comorbidity for PCI and CABG in the top 5% cost groups, but for PCI this was not seen outside the top 5%. For PCI, moderate cost increase was associated with increased deprivation, but the picture was more mixed following CABG interventions. For both interventions, lower costs post intervention were seen in rural locations.ConclusionWe identified and compared health outcomes for selected specialist cardiac interventions amongst patients resident in Wales, with these methods and analyses, providing a template for comparing other cardiac interventions.

Attendance and clinical information for all Accident and Emergency attendances.

Administrative and clinical information for all NHS Wales Accident and Emergency department attendances. Includes the All Wales Injury Surveillance Systems (AWISS) dataset.

Data recording practices may vary, especially in some of the minor A&E and Minor Injury Units which could account for some local differences.

The SAIL DeC is a population-based electronic cohort (e-cohort) containing health-related information on people with and without diagnosed dementia in Wales, United Kingdom. The participants are linked through a range of healthcare, education, and juridical databases, as well as the census. It is estimated that the sample population covers between 70 and 80% of the Welsh population.

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.

Attendance information for all hospital outpatient appointments.

Test results from the Laboratory Information Management System for COVID19 tests (coronavirus SARS CoV2 PCR and coronavirus PCR tests). Details tests, outcomes, and some clinically relevant patient information about Covid19 Tests in Wales.

Access Request Process: https://saildatabank.com/application-process/

Background:
The Millennium Cohort Study (MCS) is a large-scale, multi-purpose longitudinal dataset providing information about babies born at the beginning of the 21st century, their progress through life, and the families who are bringing them up, for the four countries of the United Kingdom. The original objectives of the first MCS survey, as laid down in the proposal to the Economic and Social Research Council (ESRC) in March 2000, were:

• to chart the initial conditions of social, economic and health advantages and disadvantages facing children born at the start of the 21st century, capturing information that the research community of the future will require
• to provide a basis for comparing patterns of development with the preceding cohorts (the National Child Development Study, held at the UK Data Archive under GN 33004, and the 1970 Birth Cohort Study, held under GN 33229)
• to collect information on previously neglected topics, such as fathers' involvement in children's care and development
• to focus on parents as the most immediate elements of the children's 'background', charting their experience as mothers and fathers of newborn babies in the year 2000, recording how they (and any other children in the family) adapted to the newcomer, and what their aspirations for her/his future may be
• to emphasise intergenerational links including those back to the parents' own childhood
• to investigate the wider social ecology of the family, including social networks, civic engagement and community facilities and services, splicing in geo-coded data when available

Additional objectives subsequently included for MCS were:

• to provide control cases for the national evaluation of Sure Start (a government programme intended to alleviate child poverty and social exclusion)
• to provide samples of adequate size to analyse and compare the smaller countries of the United Kingdom, and include disadvantaged areas of England

Further information about the MCS can be found on the Centre for Longitudinal Studies web pages.

The content of MCS studies, including questions, topics and variables can be explored via the CLOSER Discovery website.

The first sweep (MCS1) interviewed both mothers and (where resident) fathers (or father-figures) of infants included in the sample when the babies were nine months old, and the second sweep (MCS2) was carried out with the same respondents when the children were three years of age. The third sweep (MCS3) was conducted in 2006, when the children were aged five years old, the fourth sweep (MCS4) in 2008, when they were seven years old, the fifth sweep (MCS5) in 2012-2013, when they were eleven years old, the sixth sweep (MCS6) in 2015, when they were fourteen years old, and the seventh sweep (MCS7) in 2018, when they were seventeen years old.

Safeguarded versions of MCS studies:
The Safeguarded versions of MCS1, MCS2, MCS3, MCS4, MCS5, MCS6 and MCS7 are held under UK Data Archive SNs 4683, 5350, 5795, 6411, 7464, 8156 and 8682 respectively. The longitudinal family file is held under SN 8172.

Polygenic Indices
Polygenic indices are available under Special Licence SN 9437. Derived summary scores have been created that combine the estimated effects of many different genes on a specific trait or characteristic, such as a person's risk of Alzheimer's disease, asthma, substance abuse, or mental health disorders, for example. These polygenic scores can be combined with existing survey data to offer a more nuanced understanding of how cohort members' outcomes may be shaped.

Sub-sample studies:
Some studies based on sub-samples of MCS have also been conducted, including a study of MCS respondent mothers who had received assisted fertility treatment, conducted in 2003 (see EUL SN 5559). Also, birth registration and maternity hospital episodes for the MCS respondents are held as a separate dataset (see EUL SN 5614).

Release of Sweeps 1 to 4 to Long Format (Summer 2020)
To support longitudinal research and make it easier to compare data from different time points, all data from across all sweeps is now in a consistent format. The update affects the data from sweeps 1 to 4 (from 9 months to 7 years), which are updated from the old/wide to a new/long format to match the format of data of sweeps 5 and 6 (age 11 and 14 sweeps). The old/wide formatted datasets contained one row per family with multiple variables for different respondents. The new/long formatted datasets contain one row per respondent (per parent or per cohort member) for each MCS family. Additional updates have been made to all sweeps to harmonise variable labels and enhance anonymisation.

How to access genetic and/or bio-medical sample data from a range of longitudinal surveys:
For information on how to access biomedical data from MCS that are not held at the UKDS, see the CLS Genetic data and biological samples webpage.

Secure Access datasets:
Secure Access versions of the MCS have more restrictive access conditions than versions available under the standard Safeguarded Licence or Special Licence (see 'Access data' tab above).

Secure Access versions of the MCS include:

• detailed sensitive variables not available under EUL. These have been grouped thematically and are held under SN 8753 (socio-economic, accommodation and occupational data), SN 8754 (self-reported health, behaviour and fertility), SN 8755 (demographics, language and religion) and SN 8756 (exact participation dates). These files replace previously available studies held under SNs 8456 and 8622-8627
  
• detailed geographical identifier files which are grouped by sweep held under SN 7758 (MCS1), SN 7759 (MCS2), SN 7760 (MCS3), SN 7761 (MCS4), SN 7762 (MCS5 2001 Census Boundaries), SN 7763 (MCS5 2011 Census Boundaries), SN 8231 (MCS6 2001 Census Boundaries), SN 8232 (MCS6 2011 Census Boundaries), SN 8757 (MCS7), SN 8758 (MCS7 2001 Census Boundaries) and SN 8759 (MCS7 2011 Census Boundaries). These files replace previously available files grouped by geography SN 7049 (Ward level), SN 7050 (Lower Super Output Area level), and SN 7051 (Output Area level)
• linked education administrative datasets for Key Stages 1, 2, 4 and 5 held under SN 8481 (England). This replaces previously available datasets for Key Stage 1 (SN 6862) and Key Stage 2 (SN 7712)
  
• linked education administrative datasets for Key Stage 1 held under SN 7414 (Scotland)
• linked education administrative dataset for Key Stages 1, 2, 3 and 4 under SN 9085 (Wales)
  
• linked NHS Patient Episode Database for Wales (PEDW) for MCS1 – MCS5 held under SN 8302
• linked Scottish Medical Records data held under SNs 8709, 8710, 8711, 8712, 8713 and 8714;
• Banded Distances to English Grammar Schools for MCS5 held under SN 8394
• linked Health Administrative Datasets (Hospital Episode Statistics) for England for years 2000-2019 held under SN 9030
• linked Hospital of Birth data held under SN 5724.

The linked education administrative datasets held under SNs 8481,7414 and 9085 may be ordered alongside the MCS detailed geographical identifier files only if sufficient justification is provided in the application.

Researchers applying for access to the Secure Access MCS datasets should indicate on their ESRC Accredited Researcher application form the EUL dataset(s) that they also wish to access (selected from the MCS Series Access web page).

Millennium Cohort Study: Linked Health Administrative Datasets (SAIL), Wales: Secure Access

The Welsh health data that have been linked to the MCS survey data (UK Data Archive GN 33359) include data files from the SAIL Databank database for those cohort members and their parents/other adult household members with consent to health data linkage obtained at age 7 (and not subsequently withdrawn). The SAIL Databank contains information about all hospital admissions in Wales.

At the fourth survey, when the cohort were around 7 years old, adults with parental responsibility were asked to give consent to link information collected within MCS to their child’s routine health records up until their fourteenth birthday. Parents and other adult household respondents were also asked to consent to their own health records being linked.

CVD-COVID-UK, co-ordinated by the British Heart Foundation (BHF) Data Science Centre (https://bhfdatasciencecentre.org/), is one of the NIHR-BHF Cardiovascular Partnership’s National Flagship Projects.

CVD-COVID-UK aims to understand the relationship between COVID-19 and cardiovascular diseases through analyses of de-identified, pseudonymised, linked, nationally collated health datasets across the four nations of the UK. The consortium has over 400 members across more than 50 institutions including data custodians, data scientists and clinicians, all of whom have signed up to an agreed set of principles with an inclusive, open and transparent ethos.

Approved researchers access data within secure trusted/secure research environments (TREs/SDEs) provided by NHS England (England), the National Safe Haven (Scotland), the Secure Anonymised Information Linkage (SAIL) Databank (Wales) and the Honest Broker Service (Northern Ireland). A dashboard of datasets available in each nation’s TRE can be found here: https://bhfdatasciencecentre.org/areas/cvd-covid-uk-covid-impact/

This dataset represents the linked datasets in SAIL Databank’s TRE for Wales and contains the following datasets: • Welsh Longitudinal GP Dataset - Welsh Primary Care (Daily COVID codes only) (GPCD) • Welsh Longitudinal General Practice Dataset (WLGP) - Welsh Primary Care • Critical Care Dataset (CCDS) • Emergency Department Dataset Daily (EDDD) • Emergency Department Dataset (EDDS) • Outpatient Database for Wales (OPDW) • Outpatient Referral (OPRD) • Patient Episode Dataset for Wales (PEDW) • COVID-19 Test Results (PATD) • COVID-19 Test Trace and Protect (CTTP) - Legacy • COVID-19 Shielded People List (CVSP) • SARS-CoV-2 viral sequencing data (COG-UK data)-Lineage/Variant Data-Wales (CVSD) • Covid Vaccination Dataset (CVVD) • Annual District Death Daily (ADDD) • Annual District Death Extract (ADDE) • COVID-19 Consolidated Deaths (CDDS) • Intensive Care National Audit and Research Centre (ICCD) - Legacy - COVID only • Intensive Care National Audit and Research Centre (ICNC) • Welsh Dispensing Dataset (WDDS) - Legacy • Annual District Birth Extract (ADBE) • Maternity Indicators Dataset (MIDS) • National Community Child Health Database (NCCHD) • Care Home Dataset (CARE) • Congenital Anomaly Register and Information Service (CARS) • Referral to Treatment Times (RTTD) • SAIL Dementia e-Cohort (SDEC) • Welsh Ambulance Services NHS Trust (WASD) • Welsh Demographic Service Dataset (WDSD) • Welsh Results Reports Service (WRRS) • ONS 2011 Census Wales (CENW)

LTC, long-term condition. (CSV)

The UK Cystic Fibrosis Registry is a national, secure, centralized database sponsored and managed by the Cystic Fibrosis Trust, with UK National Health Service (NHS) research ethics approval and consent from each person for whom data are collected. First established in 1995, it records longitudinal health data on all people with cystic fibrosis (CF) in England, Wales, Scotland and Northern Ireland, and to date has captured data on over 12,000 individuals.

If you are interested in using the CYFI dataset in the SAIL Databank, please contact SAIL via the website, along with also discussing your project with the Cystic Fibrosis Registry team for further advice via email at: registry@cysticfibrosis.org.uk

LTC, long-term condition. (CSV)

Background: The Millennium Cohort Study (MCS) is a large-scale, multi-purpose longitudinal dataset providing information about babies born at the beginning of the 21st century, their progress through life, and the families who are bringing them up, for the four countries of the United Kingdom. The original objectives of the first MCS survey, as laid down in the proposal to the Economic and Social Research Council (ESRC) in March 2000, were:to chart the initial conditions of social, economic and health advantages and disadvantages facing children born at the start of the 21st century, capturing information that the research community of the future will requireto provide a basis for comparing patterns of development with the preceding cohorts (the National Child Development Study, held at the UK Data Archive under GN 33004, and the 1970 Birth Cohort Study, held under GN 33229)to collect information on previously neglected topics, such as fathers' involvement in children's care and developmentto focus on parents as the most immediate elements of the children's 'background', charting their experience as mothers and fathers of newborn babies in the year 2000, recording how they (and any other children in the family) adapted to the newcomer, and what their aspirations for her/his future may beto emphasise intergenerational links including those back to the parents' own childhoodto investigate the wider social ecology of the family, including social networks, civic engagement and community facilities and services, splicing in geo-coded data when availableAdditional objectives subsequently included for MCS were:to provide control cases for the national evaluation of Sure Start (a government programme intended to alleviate child poverty and social exclusion)to provide samples of adequate size to analyse and compare the smaller countries of the United Kingdom, and include disadvantaged areas of EnglandFurther information about the MCS can be found on the Centre for Longitudinal Studies web pages.The content of MCS studies, including questions, topics and variables can be explored via the CLOSER Discovery website. The first sweep (MCS1) interviewed both mothers and (where resident) fathers (or father-figures) of infants included in the sample when the babies were nine months old, and the second sweep (MCS2) was carried out with the same respondents when the children were three years of age. The third sweep (MCS3) was conducted in 2006, when the children were aged five years old, the fourth sweep (MCS4) in 2008, when they were seven years old, the fifth sweep (MCS5) in 2012-2013, when they were eleven years old, the sixth sweep (MCS6) in 2015, when they were fourteen years old, and the seventh sweep (MCS7) in 2018, when they were seventeen years old. End User Licence versions of MCS studies:The End User Licence (EUL) versions of MCS1, MCS2, MCS3, MCS4, MCS5, MCS6 and MCS7 are held under UK Data Archive SNs 4683, 5350, 5795, 6411, 7464, 8156 and 8682 respectively. The longitudinal family file is held under SN 8172.

Sub-sample studies: Some studies based on sub-samples of MCS have also been conducted, including a study of MCS respondent mothers who had received assisted fertility treatment, conducted in 2003 (see EUL SN 5559). Also, birth registration and maternity hospital episodes for the MCS respondents are held as a separate dataset (see EUL SN 5614).Release of Sweeps 1 to 4 to Long Format (Summer 2020)To support longitudinal research and make it easier to compare data from different time points, all data from across all sweeps is now in a consistent format. The update affects the data from sweeps 1 to 4 (from 9 months to 7 years), which are updated from the old/wide to a new/long format to match the format of data of sweeps 5 and 6 (age 11 and 14 sweeps). The old/wide formatted datasets contained one row per family with multiple variables for different respondents. The new/long formatted datasets contain one row per respondent (per parent or per cohort member) for each MCS family. Additional updates have been made to all sweeps to harmonise variable labels and enhance anonymisation.

How to access genetic and/or bio-medical sample data from a range of longitudinal surveys:For information on how to access biomedical data from MCS that are not held at the UKDS, see the CLS Genetic data and biological samples webpage.

Secure Access datasets: Secure Access versions of the MCS have more restrictive access conditions than versions available under the standard End User Licence or Special Licence (see 'Access data' tab above).

Secure Access versions of the MCS include:detailed sensitive variables not available under EUL.

(Not yet available in the SAIL Databank) A census in the UK is a count of all people and households. This census in the UK was held on 21 March 2021.

WAO is a derived-dataset based on information available in the SAIL Databank including an e-cohort of patients with a history of asthma in Wales.

Test results for COVID-19 tests. Details tests, outcomes, and some clinically relevant patient information about COVID-19 Tests in Wales.

Objectives: To examine trends in strong opioid prescribing in a primary care population in Wales and identify if factors such as age, deprivation and recorded diagnosis of depression or anxiety may have influenced any changes noted.

Design: Trend, cross-sectional and longitudinal analyses of routine data from the Primary Care General Practice database and accessed via the Secure Anonymised Information Linkage (SAIL) databank. Setting: A total of 345 Primary Care practices in Wales.

Participants: Anonymised records of 1,223,503 people aged 18 or over, receiving at least one opioid pre- scription between 1 January 2005 and 31 December 2015 were analysed. People with a cancer diagnosis (10.1%) were excluded from the detailed analysis.

Results: During the study period, 26,180,200 opioid prescriptions were issued to 1,223,503 individuals (55.9% female, 89.9% non-cancer diagnoses). The greatest increase in annual prescribing was in the 18–24 age group (10,470%), from 0.08 to 8.3 prescriptions/1000 population, although the 85+ age group had the highest prescribing rates across the study period (from 149.9 to 288.5 prescriptions/1000 popu- lation). The number of people with recorded diagnoses of depression or anxiety and prescribed strong opioids increased from 1.2 to 5.1 people/1000 population (328%). The increase was 366.9% in areas of highest deprivation compared to 310.3 in the least. Areas of greatest deprivation had more than twice the rate of strong opioid prescribing than the least deprived areas of Wales.

Conclusion: The study highlights a large increase in strong opioid prescribing for non-cancer pain, in Wales between 2005 and 2015. Population groups of interest include the youngest and oldest adult age groups and people with depression or anxiety particularly if living in the most deprived communities. Based on this evidence, development of a Welsh national guidance on safe and rational prescribing of opioids in chronic pain would be advisable to prevent further escalation of these medicines.

Methods Data extracted from the Secure Anonymised Information Linkage databank (SAIL). SQL code used to extract annualised totals for each subset of data.

Excel and SPSS25 used to analyse data using descriptive statistical methods.

Excel used to produce trend graphs and totals.