Phase 1 COVID-19 Data and Connectivity – National Core Study (Phase 1 D&C-NCS)
Lead Research Organisation:
Health Data Research UK
Department Name: UNLISTED
Abstract
The Data and Connectivity study sits across the other National Core Studies and delivers a national health data research capability to support COVID-19 research questions, ensuring datasets are discoverable and accessible and linkages are established to answer the priority research questions from the other five National Core Studies. Making data available for wider research use will increase the scope of benefits beyond the specific studies above, leading to unexpected benefits and boosting UK research capacity more generally, increasing return on investment for the NCS programme.
Data integration and harmonisation of methods and standards will enable rapid research and development of new interventions and technologies across the spectrum of COVID-19, and knowledge and technology transfer to other clinical and public health areas.
Collation and linkage between datasets is critical to bringing the core studies together, ensuring that each of them can deliver against their policy priorities e.g. hospital data may not currently be linked with GP data and wider community data (e.g. socioeconomic data or data on housing and the built environment). Access, cleaning, linkage and use of these datasets together is needed to fully understand links between these factors and outcomes.
Delivery of the COVID-19 Data and Connectivity Study will involve close interaction with data custodians, the public and patients, and providers of UK-wide national Trusted Research Environments (TREs) to ensure the required data is stored safely and securely, made readily available to approved researchers and is associated with compute, analytical and data services that make it easier to address priority research questions in a transparent and trustworthy way.
Phase 1 will:
• Continue to respond to emerging COVID-19 research priorities, mapping key datasets required by the National Core Studies, NIHR UPH Studies and SAGE sub-groups to allow research which can inform policy and operational decision making across the UK
• Further develop the data infrastructure and services across the UK to allow faster access to high priority health, administrative, molecular, and behavioural data assets for researchers working on the most important COVID-related studies, ensuring priority research questions can be answered efficiently, in a transparent and trustworthy way.
• Strengthen and extend the existing national Trusted Research Environments (TRE) and UK Health Data Research Innovation Gateway infrastructure through inclusive four nations approach ensuring the priority datasets for COVID-19 research are findable, accessible, inter-operable and reusable (FAIR) as a single shop window
Data integration and harmonisation of methods and standards will enable rapid research and development of new interventions and technologies across the spectrum of COVID-19, and knowledge and technology transfer to other clinical and public health areas.
Collation and linkage between datasets is critical to bringing the core studies together, ensuring that each of them can deliver against their policy priorities e.g. hospital data may not currently be linked with GP data and wider community data (e.g. socioeconomic data or data on housing and the built environment). Access, cleaning, linkage and use of these datasets together is needed to fully understand links between these factors and outcomes.
Delivery of the COVID-19 Data and Connectivity Study will involve close interaction with data custodians, the public and patients, and providers of UK-wide national Trusted Research Environments (TREs) to ensure the required data is stored safely and securely, made readily available to approved researchers and is associated with compute, analytical and data services that make it easier to address priority research questions in a transparent and trustworthy way.
Phase 1 will:
• Continue to respond to emerging COVID-19 research priorities, mapping key datasets required by the National Core Studies, NIHR UPH Studies and SAGE sub-groups to allow research which can inform policy and operational decision making across the UK
• Further develop the data infrastructure and services across the UK to allow faster access to high priority health, administrative, molecular, and behavioural data assets for researchers working on the most important COVID-related studies, ensuring priority research questions can be answered efficiently, in a transparent and trustworthy way.
• Strengthen and extend the existing national Trusted Research Environments (TRE) and UK Health Data Research Innovation Gateway infrastructure through inclusive four nations approach ensuring the priority datasets for COVID-19 research are findable, accessible, inter-operable and reusable (FAIR) as a single shop window
Technical Summary
The Data and Connectivity study sits across the other National Core Studies and delivers a national health data research capability to support COVID-19 research questions, ensuring datasets are discoverable and accessible and linkages are established to answer the priority research questions from the other five National Core Studies. Making data available for wider research use will increase the scope of benefits beyond the specific studies above, leading to unexpected benefits and boosting UK research capacity more generally, increasing return on investment for the NCS programme.
Data integration and harmonisation of methods and standards will enable rapid research and development of new interventions and technologies across the spectrum of COVID-19, and knowledge and technology transfer to other clinical and public health areas.
Collation and linkage between datasets is critical to bringing the core studies together, ensuring that each of them can deliver against their policy priorities e.g. hospital data may not currently be linked with GP data and wider community data (e.g. socioeconomic data or data on housing and the built environment). Access, cleaning, linkage and use of these datasets together is needed to fully understand links between these factors and outcomes.
Delivery of the COVID-19 Data and Connectivity Study will involve close interaction with data custodians, the public and patients, and providers of UK-wide national Trusted Research Environments (TREs) to ensure the required data is stored safely and securely, made readily available to approved researchers and is associated with compute, analytical and data services that make it easier to address priority research questions in a transparent and trustworthy way.
Phase 1 will:
• Continue to respond to emerging COVID-19 research priorities, mapping key datasets required by the National Core Studies, NIHR UPH Studies and SAGE sub-groups to allow research which can inform policy and operational decision making across the UK
• Further develop the data infrastructure and services across the UK to allow faster access to high priority health, administrative, molecular, and behavioural data assets for researchers working on the most important COVID-related studies, ensuring priority research questions can be answered efficiently, in a transparent and trustworthy way.
• Strengthen and extend the existing national Trusted Research Environments (TRE) and UK Health Data Research Innovation Gateway infrastructure through inclusive four nations approach ensuring the priority datasets for COVID-19 research are findable, accessible, inter-operable and reusable (FAIR) as a single shop window
Data integration and harmonisation of methods and standards will enable rapid research and development of new interventions and technologies across the spectrum of COVID-19, and knowledge and technology transfer to other clinical and public health areas.
Collation and linkage between datasets is critical to bringing the core studies together, ensuring that each of them can deliver against their policy priorities e.g. hospital data may not currently be linked with GP data and wider community data (e.g. socioeconomic data or data on housing and the built environment). Access, cleaning, linkage and use of these datasets together is needed to fully understand links between these factors and outcomes.
Delivery of the COVID-19 Data and Connectivity Study will involve close interaction with data custodians, the public and patients, and providers of UK-wide national Trusted Research Environments (TREs) to ensure the required data is stored safely and securely, made readily available to approved researchers and is associated with compute, analytical and data services that make it easier to address priority research questions in a transparent and trustworthy way.
Phase 1 will:
• Continue to respond to emerging COVID-19 research priorities, mapping key datasets required by the National Core Studies, NIHR UPH Studies and SAGE sub-groups to allow research which can inform policy and operational decision making across the UK
• Further develop the data infrastructure and services across the UK to allow faster access to high priority health, administrative, molecular, and behavioural data assets for researchers working on the most important COVID-related studies, ensuring priority research questions can be answered efficiently, in a transparent and trustworthy way.
• Strengthen and extend the existing national Trusted Research Environments (TRE) and UK Health Data Research Innovation Gateway infrastructure through inclusive four nations approach ensuring the priority datasets for COVID-19 research are findable, accessible, inter-operable and reusable (FAIR) as a single shop window
Organisations
- Health Data Research UK (Lead Research Organisation)
- Public Health Scotland (Collaboration)
- Lancashire Teaching Hospitals NHS Foundation Trust (Collaboration)
- BARTS HEALTH NHS TRUST (Collaboration)
- National Institute for Health Research (Collaboration)
- IMPERIAL COLLEGE LONDON (Collaboration)
- NHS DIGITAL (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- Alan Turing Institute (Collaboration)
- University of Sheffield (Collaboration)
- Imperial College Healthcare NHS Trust (Collaboration)
- Cardiff University (Collaboration)
- SAIL Databank (Collaboration)
- Health and Social Care in Northern Ireland (HSCNI) (Collaboration)
- UNIVERSITY OF EDINBURGH (Collaboration)
- UNIVERSITY OF LIVERPOOL (Collaboration)
- Office for National Statistics (Collaboration)
- Intensive Care National Audit and Research Centre (Collaboration)
- University of Bristol (Collaboration)
People |
ORCID iD |
Publications
Abbott T
(2021)
Mortality after surgery with SARS-CoV-2 infection in England: a population-wide epidemiological study
in British Journal of Anaesthesia
Agrawal U
(2022)
Association between multimorbidity and mortality in a cohort of patients admitted to hospital with COVID-19 in Scotland.
in Journal of the Royal Society of Medicine
Agrawal U
(2021)
COVID-19 hospital admissions and deaths after BNT162b2 and ChAdOx1 nCoV-19 vaccinations in 2·57 million people in Scotland (EAVE II): a prospective cohort study.
in The Lancet. Respiratory medicine
Andrews C
(2022)
OpenSAFELY: Representativeness of electronic health record platform OpenSAFELY-TPP data compared to the population of England.
in Wellcome open research
| Description | The Alan Turing Institute - HDR UK D&C Funding Call |
| Amount | £1,000,000 (GBP) |
| Funding ID | D-HMS-050 |
| Organisation | Alan Turing Institute |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 10/2021 |
| End | 10/2022 |
| Description | Understanding Mechanisms of Thrombosis and Thrombocytopenia in COVID-19 and with SARS-CoV-2 Vaccines |
| Amount | £165,192,884 (GBP) |
| Funding ID | NIHR135073 |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 07/2021 |
| End | 02/2023 |
| Description | Understanding Mechanisms of Thrombosis and Thrombocytopenia in COVID-19 and with SARS-CoV-2 Vaccines |
| Amount | £1,669,962 (GBP) |
| Funding ID | NIHR135073 |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 07/2021 |
| End | 06/2022 |
| Title | Cohort Discovery Search Tool |
| Description | Cohort Discovery is a new Gateway feature that will allow users to carry out a more specific search and assessment on datasets listed in the Gateway to improve the discovery of datasets. Using the tool users can search across multiple datasets to find cohorts (groups) of patients with specific, defined characteristics (e.g patients that don't smoke aged between 18-30 and who live in England). This has now been integrated into numerous data custodians infrastructure including SAIL Databank, Scottish National Data Safe Haven |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://www.healthdatagateway.org/about/cohort-discovery |
| Title | Cohort Discovery tool |
| Description | In collaboration with CO CONNECT and Data Connectivity NCS, the Cohort Discovery tool is a new Gateway feature that will allow users to carry out a more specific search and assessment on datasets listed in the Gateway to improve the discovery of datasets. Using the tool users can search across multiple datasets to find cohorts (groups) of patients with specific, defined characteristics (e.g patients that don't smoke aged between 18-30 and who live in England). |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://www.healthdatagateway.org/about/cohort-discovery |
| Title | Federated Metadata Catalogues |
| Description | Improvements to the metadata which describe each NCS dataset have been significant; this is important to ensure that researchers understand the usefulness of datasets for research. Our aim is for all NCS datasets to have platinum level metadata. In January 2021 47 NCS datasets were listed on the Gateway, with technical metadata for 37. As of March 2023 this has increased to 111 data sets with technical metadata for all. Progress continues across the national UK TRE network to implement federated metadata catalogues, which will enable dynamic, automated metadata updates, synchronized to the Gateway, with NHS Digital, ONS and SAIL Databank all now implemented |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | ONS have now used the same method to implement a federated metadata catalogue for the ONS TRE |
| URL | https://web.www.healthdatagateway.org/search?search=NCS&datasetSort=latest&tab=Datasets |
| Title | Standardised and streamlined Data Access Request Form |
| Description | Four out of five of the national Trusted Research Environment Data and Connectivity NCS delivery partners have now implemented the 5 Safes standardised data access request form, integrating with the HDR Innovation Gateway. This enables researchers to discover and access all NCS datasets via the Gateway, ensuring a standardised and harmonised process. Feedback from NCS researchers has led to improvements being implemented - e.g the ability to duplicate applications being submitted to different data custodians |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | For the first time, a harmonised and streamlined data access process across multiple data custodians |
| URL | https://www.healthdatagateway.org/ |
| Title | 2011 Census Dataset (Scotland) |
| Description | 2011 Census variables (and variable breakdowns) PUBLIC HEALTH SCOTLAND |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Now available for access in Scottish National Data Safe Haven for urgent COVID 19 research to support National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/a05aef07-c3fa-4331-905a-6b6f58eac3d5 |
| Title | Annual Death District Daily Dataset (Wales) |
| Description | Daily version of Annual District Deaths Datasets. Office for National Statistics (ONS) register of all deaths relating to Welsh residents, including those that died outside of Wales. The data are collected from death registrations. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked within SAIL databank TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study |
| URL | https://web.www.healthdatagateway.org/dataset/584bf8c8-d58f-44c6-9b65-e1611144fd54 |
| Title | Annual District Death Extract (Wales) |
| Description | Office for National Statistics (ONS) register of all deaths relating to Welsh residents, including those that died outside of Wales. The data are collected from death registrations. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked within SAIL databank TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study |
| URL | https://web.www.healthdatagateway.org/dataset/15cf4241-abad-4dcc-95b0-8cd7c02be999 |
| Title | Asymptomatic COVID-19 in Education (ACE) Cohort |
| Description | A cohort of students and staff who have consented for research from the Universities of Nottingham, Cambridge and Cardiff. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | Cohort data set that is available to search via the cohort discovery tool now enabled on the GDR Innovation Gateway |
| URL | https://web.www.healthdatagateway.org/dataset/48adf432-9b66-4d03-a25e-008fbbb24f56 |
| Title | Business Impact of COVID-19 Survey (BICS) dataset |
| Description | The indicators and analysis presented in this bulletin are based on responses from the new voluntary fortnightly business survey, which captures business' views on impact on turnover, workforce prices, trade and business resilience. These data relate to the period 9 March 2020 to 22 March 2020.The survey was sent to around 17,800 UK businesses, and results presented in this release are based on a limited number of responses, around 25.9% (4,598) of all businesses surveyed who responded. This is an increase of 956 responses from the preliminary results published on the 2 April 2020. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the ONS SRS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/8e739a01-bcfa-4b75-b7f8-e694ee185f8d |
| Title | COG-UK Viral Genome Sequences |
| Description | COG-UK Consortium has published a dataset which contains over 20K SARS-CoV-2 viral genome sequences available as open access. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://web.www.healthdatagateway.org/dataset/1fe02b65-7b77-43bf-93c8-4f0743fee672 |
| Title | COVID 19 Symptom Tracker (ZOE) dataset |
| Description | 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. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available within the SAIL TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/594cfe55-96e3-45ff-874c-2c0006eeb881 |
| Title | COVID Lateral Flow Test (Wales) |
| Description | Rapid lateral flow - Welsh data |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://web.www.healthdatagateway.org/dataset/dc22db56-8791-4e96-9ce6-6b6a58b1241f |
| Title | COVID Vaccination Dataset (Wales) |
| Description | This dataset covers all patients and vaccinations administered or planned for Covid-19, in or funded by the NHS. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the ONS SRS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/471f101c-a45e-4620-8710-be3036a46fba |
| Title | COVID antigen testing - Pillar 1 dataset |
| Description | This dataset is extracted from the Laboratory Information Systems in Northern Ireland hospitals on a daily basis. It contains details of COVID-19 antigen tests carried out in each of the hospital laboratories, including those processed on behalf of primary care, social care and community settings. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NI HBS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/3abc20ce-3dc6-4715-9de0-56aa97a6f5ec |
| Title | COVID antigen testing - Pillar 2 Northern Ireland dataset |
| Description | Pillar 2 data processed by NHS Digital and extracts for NI residents are sent to the NI Public Health Agency |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NI HBS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/c8f2ee14-2831-445d-a207-2f7f932f4735 |
| Title | COVID-19 Clinical Information Network (CO-CIN) dataset |
| Description | CO-CIN has collected data on 105,000 patients of all ages requiring admission to hospital with covid-19, and patients in hospital subsequently diagnosed with covid-19 in England, Scotland and Wales. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the Scottish National Data Safe Haven and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/84336be3-23bd-466e-b29b-df48db897665 |
| Title | COVID-19 Consolidated Deaths Dataset (Wales) |
| Description | 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 |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the SAIL TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/70e37f44-5c3e-4c83-a42a-89b3476d1d45 |
| Title | COVID-19 SARI-Watch (formerly CHESS) dataset |
| Description | Data forming the COVID-19 SARI-Watch data set relate to demographic, risk factor, treatment, and outcome information for patients admitted to hospital with a confirmed COVID-19 diagnosis, as recorded in the PHE COVID-19 SARI-Watch Surveillance System. SARI-Watch data are to be collected for the purposes of direct care, service monitoring, planning and research in response to the spread of COVID-19, including for the following purposes identified in the COVID-19 Directions (see below): •understanding information about patient access to health services and adult social care services as a direct or indirect result of COVID-19 and the availability and capacity of those services •monitoring and managing the response to COVID-19 by health and social care bodies and the Government, including providing information to the public about COVID-19 and its effectiveness, and information about capacity, medicines, equipment, supplies, services and the workforce within the health services and adult social care services •research and planning in relation to COVID-19, such as providing COVID-19 diagnosis. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/f61f116d-f732-450e-9d34-c6ae00e3fd1e |
| Title | COVID-19 Shielded People List (CVSP)- SAIL |
| Description | List of high-risk people advised to self-isolate during Covid pandemic in Wales |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Analysis of data included in OneWales COVID19 Government response outputs - listed in outputs section |
| URL | https://web.www.healthdatagateway.org/dataset/dc22db56-8791-4e96-9ce6-6b6a58b1241f |
| Title | COVID-19 Shielded People list dataset (Wales) |
| Description | List of high-risk people advised to self-isolate during Covid pandemic.(Wales) |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the ONS SRS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/dc22db56-8791-4e96-9ce6-6b6a58b1241f |
| Title | COVID-19 Test Trace and Protect [CTTP] (Wales) |
| Description | This dataset details the Covid-19 Test Trace and Protect programme implemented across various parts of the UK. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the SAIL TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/c0fc84af-aeab-4c7e-aa0b-8264baff55d9 |
| Title | COVID-19 Test results dataset (Wales) |
| Description | Test results for COVID-19 tests. Details tests, outcomes, and some clinically relevant patient information about COVID-19 Tests in Wales. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the SAIL TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/f5f6d882-163d-4ef1-a53e-000fba409480 |
| Title | COVID-19 Vaccination (Northern Ireland) |
| Description | This dataset is extracted from the HSCNI Vaccine Management System, this system was introduced for management of COVID-19 vaccine bookings across Health and Social Care Northern Ireland. Data covers all bookings including GP Practice and HSC Trust bookings. Initially vaccines had been booked on an array of different systems however all historic data has been migrated to the Vaccine Management System. The data shows the key information about the vaccine record for each patient. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | Included in DacVAP study four nation pooled analysis (see outputs) |
| URL | https://web.www.healthdatagateway.org/dataset/b0049073-3335-433d-bdb9-de22547698f8 |
| Title | COVID-19 Wastewater data (ONS) |
| Description | Samples of wastewater are collected 7 days a week from sewage treatment plants across England. Samples are analysed to determine the number of gene copies of SARS-CoV-2 per litre using quantitative Polymerase Chain Reaction (PCR). |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://web.www.healthdatagateway.org/dataset/fa9c25eb-1ce0-4f44-b6a6-46ec8caeef40 |
| Title | COVID19 Vaccination Adverse Reaction |
| Description | Includes: Patient demographics, Source Organisation, Adverse reaction details. Its scope covers: Anyone vaccinated within England and anyone vaccinated in a Devoted Administration where this information is subsequently passed to England. Settings include hospital hubs - NHS providers vaccinating on site local vaccine services - community or primary care led services which could include primary care facilities, retail, community facilities, temporary structures or roving teams vaccination centres - large sites such as sports and conference venues set up for high volumes of people |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/080a90e4-4bc6-4153-a4c6-c120eef5ba94 |
| Title | COVID19 Vaccination Status |
| Description | Data relating to coronavirus (COVID-19) vaccination status. Includes: Patient demographics, Source Organisation, vaccination details and vaccine batch events. Its scope covers: Anyone vaccinated within England Anyone vaccinated in a Devoted Administration where this information is subsequently passed to England. Settings include: hospital hubs - NHS providers vaccinating on site local vaccine services - community or primary care led services which could include primary care facilities, retail, community facilities, temporary structures or roving teams vaccination centres - large sites such as sports and conference venues set up for high volumes of people |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/98372a87-f3e6-475d-be12-46c0f9587413 |
| Title | CVD-COVID-UK / COVID-IMPACT |
| Description | CVD-COVID-UK, co-ordinated by the British Heart Foundation (BHF) Data Science Centre, is one of the NIHR-BHF Cardiovascular Partnership's National Flagship Projects. It aims to understand the relationship between COVID-19 and cardiovascular diseases such as heart attack, heart failure, stroke, and blood clots in the lungs through analyses of de-identified, pseudonymised, linked, nationally collated health datasets across the four nations of the UK. The consortium has over 200 members across more than 40 institutions including data custodians, data scientists with methodological and analytical expertise 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 research environments (TREs) provided by NHS Digital in England, the National Data Safe Haven in Scotland, the SAIL Databank in Wales and the Honest Broker Service in Northern Ireland. Linked datasets include those from primary and secondary care, COVID lab tests and vaccinations, deaths, critical care, prescribing/dispensing, cardiovascular and stroke audits, maternity services and mental health. Building on the success of CVD-COVID-UK, the BHF Data Science Centre has now gained ethical and regulatory approval to broaden the scope of the programme to all COVID-related research (in NHS Digital's TRE for England only). This is known as COVID-IMPACT and it will help to support research projects from the wider community, including for National Core Studies. A dashboard of datasets currently available in each nation's TRE can be found here: https://www.hdruk.ac.uk/projects/cvd-covid-uk-project/ |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Over 20 research outputs - listed here https://web.www.healthdatagateway.org/dataset/7e5f0247-f033-4f98-aed3-3d7422b9dc6d |
| URL | https://web.www.healthdatagateway.org/dataset/7e5f0247-f033-4f98-aed3-3d7422b9dc6d |
| Title | Census 2011 E&W - Household structure for COVID-19 models |
| Description | These tables contain the counts of the number of households (in England and Wales) within each LSOA with each specific combination of ages within it.This dataset is to be used only for COVID-19 accredited projects. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the ONS SRS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/2f66bcf9-e626-4e8d-bc6e-2d3958e709d8 |
| Title | Civil Registration - Deaths dataset (England & Wales) |
| Description | Deaths registration data (all deaths in England and Wales) collected from The Registrar General for England and Wales. Record-level patient data set, where a record represents one death registration. The data are collected at source from Local Registry offices at the point of death registration. The data are collated nationally by the Register General before being passed to the Office for National Statistics (ONS), for use in statistics and coding. Coding includes such things cause of death coding using the International Classifications of Diseases (ICD) coding system, attributing socio-economic code classifications based on occupation. ONS maintains its own version of the data set for its use in statistics. The Civil Registration of Deaths data contains 14 million unique registrations since 1993 onwards, increasing yearly. Average 500,000 - 600,000 new death registrations yearly. Records cover all deaths registered in England & Wales. ICD coding is 9th and 10th. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/050163dc-1728-4ac5-a7d9-4dd3ca0ca12a |
| Title | Cohort Discovery tool |
| Description | In collaboration with the CO CONNECT study and the Data and Connectivity NCS, the Cohort Discovery tool is a new Gateway feature that will allow users to carry out a more specific search and assessment on datasets listed in the Gateway to improve the discovery of datasets. Using the tool users can search across multiple datasets to find cohorts (groups) of patients with specific, defined characteristics (e.g patients that don't smoke aged between 18-30 and who live in England). |
| Type Of Material | Computer model/algorithm |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://www.healthdatagateway.org/about/cohort-discovery |
| Title | Coronavirus and the social impacts on Great Britain dataset |
| Description | This survey contains new indicators from the Opinions and Lifestyle Survey to understand the impacts of the coronavirus (COVID-19) pandemic on people, households and communities in Great Britain. Indicators from the Opinions and Lifestyle Survey to understand the impacts of the coronavirus (COVID-19) pandemic on people, households and communities in Great Britain. Including breakdowns by at-risk age, sex, disability and underlying health condition. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the ONS SRS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/e253257c-48c2-491b-b3b9-205161a16a7e |
| Title | CovPall Survey of Palliative Care |
| Description | CovPall is a multicenter multinational observational study of palliative care during the COVID-19 pandemic. This dataset includes the online survey of palliative care services, the first main component of CovPall. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | Peer reviewed publications (included in outputs) |
| URL | https://web.www.healthdatagateway.org/dataset/8ba190b7-4c29-4558-a256-50e1f2242874 |
| Title | Covid Immunisation (ONS Dataset) |
| Description | Record level data of people who have received a covid vaccination, including details of the vaccine and date of vaccination.(England) |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the ONS SRS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/e1a6c1e1-1cec-49cd-aea0-37d4ff56435d |
| Title | Covid-19 Infection Survey dataset |
| Description | The purpose of this dataset is to understand the prevalence of the coronavirus in the UK population, using longitudinal data and including not only cross-sectional data but the inclusion of an antibody test for a sub-sample of people. Demographic information is also included allowing for analyse by different variables to identify patterns and trends. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the ONS SRS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/628e9ad9-28c5-4d58-9ec5-04a63be9b4cf |
| Title | Covid-19 Infection Survey linked with VOA and EPC data (ONS) |
| Description | The purpose of this dataset is to understand the prevalence of COVID-19 in the UK population, including swab results, antibody tests and demographic information. COVID-19 Infection Survey households have been linked, where a match can be found, to VOA and EPC data to provide additional information on property attributes. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://web.www.healthdatagateway.org/dataset/2193ad56-6671-4ecc-9ecf-6da84e23e9fd |
| Title | Covid-19 Second Generation Surveillance System dataset |
| Description | Data forming the Covid-19 Second Generation Surveillance Systems data set relate to demographic and diagnostic information from Pillar 1 swab testing in PHE labs and NHS hospitals for those with a clinical need, and health and care workers and Pillar 2 Swab testing in the community at drive through test centres, walk in centres, home kits returned by posts, care homes, prisons etc). |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/fede31c6-a9c5-4cfb-9866-9b58b2199cff |
| Title | Covid-19 UK Non-hospital Antibody Testing Results Dataset |
| Description | The Covid-19 UK Non-hospital Antibody Testing Results (Pillar 3) dataset, also referred to as iElisa, documents individuals that have undergone a finger prick test for antibodies from having had Covid-19. The dataset is UK wide and contains positive, negative and void results. It also contains demographic data |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/a77e52cc-d404-45d6-835f-32e2dc46778a |
| Title | Covid-19 UK Non-hospital Antigen Testing Results dataset |
| Description | COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2) data is required by NHS Digital to support COVID-19 requests for linkage, analysis and dissemination to other organisations. These requests are often urgent and in support of direct care and service monitoring, planning and research. These are all functions that NHS Digital have been asked to deliver as a national resource in response to COVID-19, through the recent direction from the SoS. Antigen test results relate to subjects who have had swab testing in the community at drive through test centres, walk in centres, home kits returned by posts, care homes, prisons etc The dataset is composed of: • Patient identity and contact details • Testing centre and laboratory details • Test results • Test kit types (manufacturer) The data cover the UK and is collected under SoS Covid Direction under s254 of the HSCA 2012 and s255 requests from devolved administrations for Scotland, Northern Ireland and Wales. This is an expansion of the original scope which only included data for welsh patients tested in other parts of the UK. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/f06ec631-77d0-4b12-a21f-f11e7af49ba5 |
| Title | Critical Care Dataset (Wales) |
| Description | Nation-wide Critical Care database to monitor quality of service, to drive improvements and policy development. The data are collected and coded at each hospital. Administrative information is collected from the central PAS (Patient Administrative System), such as admission and discharge dates and times. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the SAIL TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/1789286a-deaf-49df-88cd-660e92934af6 |
| Title | Death registration data - Provisional Monthly Extracts (England and Wales) |
| Description | Monthly death registration data, collected as part of civil registration, provide information on deaths that occur in and are then registered in England and Wales. This dataset is to be used only for COVID-19 accredited projects |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the ONS SRS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/487222b7-5c13-4a92-8b41-044796048720 |
| Title | ECOSS (-/+VE tested patients only) dataset (Scotland) |
| Description | Pillar 1 & 2 COVID antigen testing data. Electronic Communication of Surveillance in Scotland (ECOSS): Holds all positive microbiology laboratory specimen results and a subset of antimicrobial susceptibility/resistance data in Scotland. Includes lighthouse tests as well as the NHS lab tests. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the Scottish National Data Safe Haven and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/5542cadc-11a4-4957-bbdd-8a6c46bcfb87 |
| Title | ECOSS (-/+VE tested patients only) dataset (Scotland) |
| Description | Pillar 1 & 2 COVID antigen testing data. Electronic Communication of Surveillance in Scotland (ECOSS): Holds all positive microbiology laboratory specimen results and a subset of antimicrobial susceptibility/resistance data in Scotland. Includes lighthouse tests as well as the NHS lab tests. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the Scottish National Data Safe Haven and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/5542cadc-11a4-4957-bbdd-8a6c46bcfb87 |
| Title | Emergency Care Dataset (ECDS) |
| Description | The Emergency Care Data Set (ECDS) is a national data set providing information to support the care provided in emergency departments by including the data items needed to understand capacity and demand and help improve patient care. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/7749d90e-dd7a-4697-8a9c-666491c64a0c |
| Title | Emergency Department Dataset (Wales) |
| Description | Administrative and clinical information for all NHS Wales Accident and Emergency department attendances. Includes the All Wales Injury Surveillance Systems (AWISS) dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the SAIL TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/75c4dcb8-33bf-43f4-b2bb-db51b6621b2c |
| Title | Emergency Department Dataset Daily Dataset (Northern Ireland) |
| Description | Information on attendances at emergency care departments in 3 of the 5 Health & Social Care Trusts in Northern Ireland - see Emergency Department (eEMS) for the other 2 Trusts. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://web.www.healthdatagateway.org/dataset/8002b4d7-ff3b-4402-b805-a6a0022836fd |
| Title | Emergency Department Dataset Daily Dataset (Wales) |
| Description | Daily version of Emergency Department Dataset.(Wales) |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the SAIL TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/fa257aa8-51fc-4eb7-a448-e473fa54686d |
| Title | Enhanced Prescribing Database dataset (Northern Ireland) |
| Description | This is a record of primary care prescriptions that are submitted by community pharmacies in Northern Ireland to the Business Service Organisation for payment. The Enhanced Prescribing Database (EPD) covers drugs prescribed in primary care and dispensed by community pharmacies. Prescriptions are submitted to the Business Services Organisation (BSO) by community pharmacies for payment. The EPD includes prescriptions issued by all types of prescribers including doctors and nurses, and all those issued and dispensed by pharmacists, dispensing doctors and appliance suppliers. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NI HBS TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/2843087f-23a4-4cfe-8e72-53f2b9562cc3 |
| Title | GP dataset - Welsh Primary Care |
| Description | This dataset covers 78% of the population of Wales and 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. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the SAIL TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/33fc3ffd-aa4c-4a16-a32f-0c900aaea3d2 |
| Title | GPES Data for Pandemic Planning and Research Dataset (COVID-19) |
| Description | NHS Digital's fortnightly collection of GP data will provide data to support vital planning and research into coronavirus (COVID-19). Coronavirus (COVID-19) has led to increased demand on general practices, including an increasing number of requests to provide patient data to inform planning and support vital research on the cause, effects, treatments and outcomes for patients of the virus. To support the response to the coronavirus outbreak, NHS Digital has been legally directed to collect and analyse healthcare information about patients, including from their GP record, for the duration of the coronavirus emergency period, under the COVID-19 Public Health Directions 2020 (COVID-19 Direction). All GP practices in England are legally required to share data with NHS Digital for this purpose under the Health and Social Care Act 2012. More information about this requirement is contained in the Data Provision Notice issued by NHS Digital to GP practices. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/696cfc9f-090d-4328-94ac-140760a77c73 |
| Title | General Acute Inpatient and Day Case - Scottish Morbidity Record (SMR01) Dataset |
| Description | The General / Acute and Inpatient Day Case dataset (SMR01) collects episode level data on hospital inpatient and day case discharges from acute specialities from hospitals in Scotland. The dataset contains patient identifiers such as name, date of birth, Community Health Index number, NHS number, postcode and ethnicity and episode management data. Of particular interest to researchers would be variables such as where the episode took place, admission type (includes patient injury classifications such as self-inflicted or home accident), waiting times, patients condition (as classified under ICD-10), operations, and discharge location. A wide variety of geographical data is also included in the dataset including Scottish Index of Multiple Deprivation and Carstairs measures, census output area, NHS Board, Electoral Ward and Parliamentary constituency. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the Scottish National Data Safe Haven and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/98cda353-0011-45b2-80ca-4ed24cd084bf |
| Title | HES:Civil Registration (Deaths) bridge dataset |
| Description | Linked Data Set - Hospital Episode Statistics to Civil Registration of Deaths |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/21aec912-444f-447d-b3c4-6791a6c82667 |
| Title | Healthcare Workers Risk Assessment (Wales) |
| Description | This dataset provides limited information about which NHS workers completed Risk Assessments in the course of normal work. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available within the SAIL TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/ed131fee-0635-4613-a453-a383d5dd7cec |
| Title | Hospital Episode Statistics Accident and Emergency |
| Description | Record-level patient data set of patients attending Accident and Emergency Departments (including minor injury units and walk-in centres) in England. A record represents one attendance. Hospital Episode Statistics (HES) is a database containing details of all admissions, A and E attendances and outpatient appointments at NHS hospitals in England. Initially this data is collected during a patient's time at hospital as part of the Commissioning Data Set (CDS). This is submitted to NHS Digital for processing and is returned to healthcare providers as the Secondary Uses Service (SUS) data set and includes information relating to payment for activity undertaken. It allows hospitals to be paid for the care they deliver. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/3ddfccc3-ba32-4653-a999-966b8d6c412f |
| Title | Hospital Episode Statistics Admitted Patient Care |
| Description | Record-level patient data set of patients admitted for treatment at NHS hospitals in England, including delivery and birth data. A record represents one episode. Hospital Episode Statistics (HES) is a database containing details of all admissions, A and E attendances and outpatient appointments at NHS hospitals in England. Records in the HES Admitted Patient Care (APC) database are called 'hospital episodes', and each hospital episode relates to a period of care for a patient under a single consultant within one hospital provider. A stay in hospital from admission to discharge is called a 'spell' and can be made up of one or more episodes of care. HES APC looks at completed episodes, called Finished Admission Episodes (FAEs), which is the first episode in a spell of care, and Finished Consultant Episodes (FCEs), which is a continuous period of care under one consultant. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/2b6409db-a669-4bef-9fd5-39c2b6f8d5e9 |
| Title | Hospital Episode Statistics Critical Care |
| Description | Record-level patient data set of patients admitted for treatment and receiving Critical Care (intensive care or high dependency care) at NHS hospitals in England. A record represents one episode of Critical Care.Hospital Episode Statistics (HES) is a database containing details of all admissions, A and E attendances and outpatient appointments at NHS hospitals in England. Adult Critical Care (ACC) is a subset of APC data. An Intensive Care Unit (ICU) or High Dependency Unit (HDU) ward in a hospital, known as a critical care unit, provides support, monitoring and treatment for critically ill patients requiring constant support and monitoring to maintain function in at least one organ, and often in multiple organs. Medical equipment is used to take the place of patients' organs during their recovery. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/80564a6b-1458-41de-a131-772eb93c0509 |
| Title | Hospital Episode Statistics Outpatients |
| Description | Record-level patient data set of patients attending outpatient clinics at NHS hospitals in England. A record represents one appointment.Hospital Episode Statistics (HES) is a database containing details of all admissions, A and E attendances and outpatient appointments at NHS hospitals in England. Initially this data is collected during a patient's time at hospital as part of the Commissioning Data Set (CDS). This is submitted to NHS Digital for processing and is returned to healthcare providers as the Secondary Uses Service (SUS) data set and includes information relating to payment for activity undertaken. It allows hospitals to be paid for the care they deliver. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/d4362d41-0838-4f41-bba3-c3268312c444 |
| Title | ISARIC4C COVID-19 Clinical Information Network (CO-CIN) |
| Description | ISARIC4C (Coronavirus Clinical Characterisation Consortium) has collected the following data and samples from: 270,230 patients at Tier Zero case report forms (CO-CIN) - data only 2,510 patients at Tier 1/2 (host/viral multiomics) - samples |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Numerous outputs which have informed policy for COVID-19 Government response, high impact research outputs. All listed here https://isaric4c.net/outputs/ |
| URL | https://web.www.healthdatagateway.org/dataset/84336be3-23bd-466e-b29b-df48db897665 |
| Title | Improving Access to Psychological Therapies Data Set |
| Description | The adult Improving Access to Psychological Therapies (IAPT) programme began in the NHS in 2008 and has transformed the treatment of anxiety disorders and depression in adults in England. Further information about the programme can be found on the NHS England Adult IAPT Programme web pages. The IAPT Data Set was developed with the IAPT Programme as a patient level, output based, secondary uses data set which aims to deliver robust, comprehensive, nationally consistent and comparable information for patients accessing NHS-funded IAPT Services in England. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/bcf6e5ce-986d-4b84-9c9c-69de966e8bbd |
| Title | Intensive Care National Audit and Research Centre - Covid19 dataset Wales |
| Description | Intensive care case mix and activity - National emergency response purposes version. The weekly version of this dataset is specifically for Covid19 national emergency response. A separate quarterly dataset is available for wider use. Intensive care case mix and activity. Includes information preceding admission to intensive care e.g. date of hospital admission, and information about min and max values of critical indicator (e.g. lowest heart rate, highest serum glucose). |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/add6226b-0f21-439a-84a6-51dc26cdc425 |
| Title | Labour Force Survey (Household) dataset |
| Description | The primary purpose of the Labour Force Survey (LFS) is "providing good quality point in time and change estimates for various labour market outputs and related topics" (National Statistics Quality Review (NSQR) of Labour Force Survey 2014). The labour market covers all aspects of people's work, including the education and training needed to equip them for work, the jobs themselves, job-search for those out of work and income from work and benefits. Output from the LFS is quarterly since 1992. Each quarter's sample is made up of 5 waves. The sample is made up of approximately 40,000 responding UK households and 100,000 individuals per quarter. This dataset only coveres household responses. Respondents are interviewed for 5 successive waves at 3-monthly intervals and 20% of the sample is replaced every quarter. The LFS is intended to be representative of the entire population of the UK. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the ONS SRS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/0b630200-1e7c-4b19-ad53-bcc8863f7ade |
| Title | Labour Force Survey (Longitudinal) dataset |
| Description | The primary purpose of the Labour Force Survey (LFS) is "providing good quality point in time and change estimates for various labour market outputs and related topics" (National Statistics Quality Review (NSQR) of Labour Force Survey 2014). The labour market covers all aspects of people's work, including the education and training needed to equip them for work, the jobs themselves, job-search for those out of work and income from work and benefits. Output from the LFS is quarterly since 1992. Each quarter's sample is made up of 5 waves. The sample is made up of approximately 40,000 responding UK households and 100,000 individuals per quarter. Respondents are interviewed for 5 successive waves at 3-monthly intervals and 20% of the sample is replaced every quarter. The LFS is intended to be representative of the entire population of the UK. This dataset is the lognitudinal LFS data |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the ONS SRS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/4ac15572-fe9a-46d3-860d-a46b616181f7 |
| Title | Labour Force Survey (Person) Dataset |
| Description | The primary purpose of the Labour Force Survey (LFS) is "providing good quality point in time and change estimates for various labour market outputs and related topics" (National Statistics Quality Review (NSQR) of Labour Force Survey 2014). The labour market covers all aspects of people's work, including the education and training needed to equip them for work, the jobs themselves, job-search for those out of work and income from work and benefits. Output from the LFS is quarterly since 1992. Each quarter's sample is made up of 5 waves. The sample is made up of approximately 40,000 responding UK households and 100,000 individuals per quarter. This dataset includes only individual responses. Respondents are interviewed for 5 successive waves at 3-monthly intervals and 20% of the sample is replaced every quarter. The LFS is intended to be representative of the entire population of the UK. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the ONS SRS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/8c60a308-1e47-4a0c-8b69-9259f05338cb |
| Title | Linked Census and death occurrences dataset |
| Description | Bespoke linked dataset that contains death registrations linked to the 2011 Census. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the ONS SRS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/54095c0e-6faa-4de4-ac26-e2c7ef3cba5c |
| Title | Linked Census and death occurrences dataset |
| Description | Bespoke linked dataset that contains death registrations linked to the 2011 Census. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the ONS SRS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/54095c0e-6faa-4de4-ac26-e2c7ef3cba5c |
| Title | MSDS (Maternity Services Data Set) |
| Description | The Maternity Services Data Set (MSDS) is the national information standard for data relating to NHS-funded maternity services. It sets out requirements for the collection and submission of operational and clinical data relating to each stage of the maternity care pathway, thereby enabling secondary uses of the data for such purposes as commissioning, payment, planning, outcomes monitoring and addressing health inequalities. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/11d3cf0f-ae5d-42f4-a756-b98c3eff46bc |
| Title | Maternity Indicators Dataset (Wales) |
| Description | 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. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the SAIL TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/a0c27454-8cbe-418f-bdae-a85d5e92e9d4 |
| Title | Maternity Inpatient and Day Case - Scottish Morbidity Record (SMR02) dataset |
| Description | The Maternity Inpatient and Day Case dataset (SMR02) collects episode level data every time a mother goes in for an obstetric event (this can be an antenatal, delivery or postnatal episode).Scottish Morbidity Record 02 (SMR02) is submitted by maternity hospitals to ISD, who have collected this information since 1975. A wide range of information is collected on the SMR02 - for example: Mother - age, height, smoking history, previous obstetric history. Birth - induction, analgesia, method of delivery, outcome. Baby - apgar score, sex, gestation, weight. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the Scottish National Data Safe Haven and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/d47c809f-3da8-4f8a-b1ee-258d21aad530 |
| Title | Medicines dispensed in Primary Care (NHSBSA data) dataset |
| Description | The Medicines Dispensed in Primary Care (NHSBSA) data comprises prescriptions for medicines that are dispensed or supplied by community pharmacists, appliance contractors and dispensing doctors in England. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/f201b68f-d995-4a70-a9ee-aa3510232777 |
| Title | Mental Health Inpatient and Day Case - Scottish Morbidity Record (SMR04) Dataset |
| Description | The Mental Health Inpatient and Day Case dataset (SMR04) collects episode level data on patients who are receiving care at psychiatric hospitals at the point of both admission and discharge. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the Scottish National Data Safe Haven and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/24de9d1a-1f48-4c10-b8fc-a3bd7449e191 |
| Title | Mental Health Services Data Set |
| Description | The Mental Health Services Data Set is a patient level, output based, secondary uses data set which aims to deliver robust, comprehensive, nationally consistent and comparable person-based information for children, young people and adults who are in contact with mental health services located in England or located outside England but treating patients commissioned by an English CCG or NHS England specialised commissioner. As a secondary uses data set it re-uses clinical and operational data for purposes other than direct patient care, for example: commissioning, service improvement and service design. It defines the data items, definitions and associated value sets extracted or derived from local Electronic Patient Record systems. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/fa2ec63d-f76d-4555-8fc1-f4bd66e3c60d |
| Title | NHS 111 Dataset (NHSO) SAIL |
| Description | NHS 111 / Integrated Urgent Care data describes a range of statistics including NHS 111 and Out of Hours services, which aim to ensure a seamless patient experience with minimum handoffs and access to a clinician where required. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://web.www.healthdatagateway.org/dataset/3d6b69dc-cb3c-4b9a-bdea-a798e7d5b5cf |
| Title | NHS 111 Dataset (Wales) |
| Description | NHS 111 / Integrated Urgent Care data describes a range of statistics including NHS 111 and Out of Hours services, which aim to ensure a seamless patient experience with minimum handoffs and access to a clinician where required. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the SAIL TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/3d6b69dc-cb3c-4b9a-bdea-a798e7d5b5cf |
| Title | NHS Scotland General Practice (GP) Contact Data - Subset (Dataset) |
| Description | This dataset is a snapshot containing predefined indicator variables relating to GP contacts for the EAVEII cohort in Scotland |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available within the Scottish National Data Safe Haven and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/8f486c3d-9504-4a0e-8e24-ab96f057fc9e |
| Title | National Records of Scotland (NRS) - Deaths Dataset |
| Description | All Registrations to the National Records of Scotland of deaths |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the National Data Safe Haven and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/e600dae2-a83c-4b7a-8d23-af4ac31ca374 |
| Title | National Records of Scotland (NRS) - Stillbirth Data (Dataset) |
| Description | All Registrations to the National Records of Scotland of stillbirths |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available within the Scottish National Data Safe Haven and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/dca0c95b-ae7d-4163-8c3b-a881f779df02 |
| Title | Northern Ireland Regional Maternity system (NIMATS) |
| Description | The Northern Ireland Maternity System (NIMATs) contains a range of demographic and clinical information on mothers and infants. It captures data relating to the current complete maternity process, but also contains details about the mother's past medical and obstetric history. It is a key source for data on birth numbers, interventions, maternal risk factors, birth weights, maternal smoking, BMI and breastfeeding on discharge. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://web.www.healthdatagateway.org/dataset/be7efa4f-e500-4a54-8157-6c4442a7e8a8 |
| Title | ONS 2011 Census Wales (CENW) Dataset |
| Description | Every ten years since 1801 the nation has set aside one day for the census - a count of all people and households. It is the most complete source of information about the population that we have. The latest census was held on Sunday 27 March 2011. Every effort is made to include everyone, and that is why the census is so important. It is the only survey which provides a detailed picture of the entire population, and is unique because it covers everyone at the same time and asks the same core questions everywhere. This makes it easy to compare different parts of the country. The information the census provides allows central and local government, health authorities and many other organisations to target their resources more effectively and to plan housing, education, health and transport services for years to come. In England and Wales, the census is planned and carried out by the Office for National Statistics. Elsewhere in the UK, responsibility lies with the National Records of Scotland and the Northern Ireland Statistics and Research Agency. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the SAIL TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/fc24482c-0f9b-445f-af7a-8598627c3b15 |
| Title | ONS and NHS Digital Census-Mortality-Hospital Episodes Linked Data Asset |
| Description | The purpose of this dataset is to enable analysis of deaths involving COVID-19 by multiple factors such as ethnicity, religion, disability and known comorbidities as well as age, sex, socioeconomic and marital status at subnational levels. 2011 Census data for usual residents of England and Wales, who were not known to have died by 1 January 2020, linked to death registrations between 1 January 2020 and 20 November 2020 on NHS number. The data exclude individuals who entered the UK in the year before the Census took place (due to their high propensity to have left the UK prior to the study period), and those over 100 years of age at the time of the Census, even if their death was not linked. The dataset contains all individuals who died (any cause) during the study period, and a 5% simple random sample of those still alive at the end of the study period. For usual residents of England, the dataset also contains comorbidity flags derived from linked Hospital Episode Statistics data from April 2017 to December 2019. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available within the ONS SRS and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies. This is the first time that administrative and health data have been linked as one data asset, and work is underway to prioritise additional linkages (e.g primary care data) |
| URL | https://web.www.healthdatagateway.org/dataset/6064c3a9-e4f1-411b-8181-f1fdca2ab2b8 |
| Title | Outpatient Appointments and Attendances - Scottish Morbidity Record (SMR00) Dataset |
| Description | The Outpatients (SMR00) dataset collects episode level data from patients on new and follow up appointments at outpatient clinics in all specialities (except A&E and Genito-Urinary Medicine) in Scotland |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the Scottish National Data Safe Haven and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/04cb9964-54fb-4529-b09b-735c3daa1c7b |
| Title | Outpatient Dataset (Wales) |
| Description | Attendance information for all NHS Wales hospital outpatient appointments. The data are collected and coded at each hospital. Administrative information is collected from the central PAS (Patient Administrative System), such as specialty of care, appointment date and attendance status. This dataset contains all scheduled outpatient appointments, including those where the patient failed to attend. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the SAIL TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/d331159b-b286-4ab9-8b36-db39123ec229 |
| Title | Patient Episode Dataset for Wales |
| Description | The database contains all inpatient and day case activity undertaken in NHS Wales plus data on Welsh residents treated in English Trusts. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the SAIL TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/4c33a5d2-164c-41d7-9797-dc2b008cc852 |
| Title | Prescribing Information System (PIS) Dataset (Scotland) |
| Description | The Prescribing Information System (PIS) is the definitive data source for all prescribing relating to all medicines and their costs that are prescribed and dispensed in the community in Scotland |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the Scottish National Data Safe Haven and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/22e3943e-edb5-44a1-9e4e-22b0f7a31767 |
| Title | QResearch Collection |
| Description | QResearch is a large, anonymised database of GP records from over 35 million patients with longitudinal data tracking back over 30 years & is linked to mortality, cancer registration & hospital data. https://www.qresearch.org/ |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | Numerous peer reviewed publications. Making the data asset finable and accessible via the HDR Gateway has resulted in increase in UK wide researchers wishing to access |
| URL | https://web.www.healthdatagateway.org/collection/4957748719417454 |
| Title | SARS-CoV-2 viral sequencing data (COG-UK data) - Lineage/Variant Data - England (ONS) |
| Description | COVID-19 COG-UK Viral Genome (variant strain data) |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://web.www.healthdatagateway.org/dataset/9a36f3f8-3b7e-4e61-8993-b9cc2734fcb8 |
| Title | SARS-CoV-2 viral sequencing data (COG-UK data) - Lineage/Variant Data - Northern Ireland |
| Description | File contains basic public metadata, including sequence_name, location, date, pangolin lineage assignment, version and associated scores, scorpio VOC/VUI constellation call and associated scores, key spike protein mutations calls, and a list of all nucleotide mutations found |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://web.www.healthdatagateway.org/dataset/3d2d9c5e-6111-4583-a6db-07affd628f1e |
| Title | SARS-CoV-2 viral sequencing data (COG-UK data) - Lineage/Variant Data - Scotland |
| Description | File contains basic public metadata, including sequence_name, location, date, pangolin lineage assignment, version and associated scores, scorpio VOC/VUI constellation call and associated scores, key spike protein mutations calls and a list of all nucleotide mutations found. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Numerous outputs led by EAVE II group in Scotland - informing COVID19 policy response |
| URL | https://web.www.healthdatagateway.org/dataset/69a356d6-599e-4d02-8241-066ce3c297bd |
| Title | SARS-CoV-2 viral sequencing data (COG-UK data) - Lineage/Variant Data - Wales |
| Description | The dataset provides information about SARS-CoV-2 variants of concern and variants under investigation in Wales. This includes phylogenetic and mutational information about samples. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Analysis of tgis data included in high impact DacVaP study and OneWales COVID-19 response outputs (listed in outputs section) |
| URL | https://web.www.healthdatagateway.org/dataset/602cbc9b-0113-4712-8c4a-0efe8d86b77c |
| Title | SICSAG Daily (Scottish Intensive Care Audit Group) Dataset |
| Description | The Scottish Intensive Care Society Audit Group (SICSAG) has maintained a national database of patients admitted to adult general Intensive Care Units (ICU) in Scotland since 1995. Each line relates to a day of stay in critical care. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the Scottish National Data Safe Haven and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/811a54fb-8b79-442f-8e28-a725a0561a15 |
| Title | SICSAG Episodes (Scottish Intensive Care Audit Group) Dataset |
| Description | The Scottish Intensive Care Society Audit Group (SICSAG) has maintained a national database of patients admitted to adult general Intensive Care Units (ICU) in Scotland since 1995. Each line relates to an 'episode of care' in critical care |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the Scottish National Data Safe Haven and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/6f8182d2-2993-400d-829d-b52cdb324bf3 |
| Title | Scotland Accident and Emergency Dataset |
| Description | There are two types of data submitted to the A&E DataMart: episode and aggregate level data. All hospitals with Emergency Departments submit episode level data containing a detailed record for each patient attendance. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the Scottish National Data Safe Haven and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/05e6752e-3a0b-4809-aa14-207b4761ef60 |
| Title | Scottish Birth Record (SBR) Dataset |
| Description | The Scottish Birth Record (SBR) records baby's neonatal care in Scotland, from antenatal through to post delivery, including readmissions and transfers in one electronic record |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the Scottish National Data Safe Haven and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/81c53293-ef64-4507-8fcf-2a254dc19936 |
| Title | Secondary Uses Services Payment By Results |
| Description | The Secondary Uses Service (SUS +) is a collection of healthcare data required by hospitals and used for planning health care, supporting payments, commissioning policy development and research. The Secondary Uses Services Payment By Results data set is derived from SUS+ and includes key data in support of the national tariff system which is used to determine the reimbursement of NHS funded care in England. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the NHS Digital TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/2004c512-f7c9-4995-b820-55f36aa3fad2 |
| Title | The Hospital Inpatient System (HIS) dataset Northern Ireland |
| Description | The Hospital Inpatient System (HIS) dataset is made up of data items relating to admitted patient care delivered by NHS hospitals in Northern Ireland, generated by the patient administration systems within each hospital. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked within NI HBS TRE and accessible to request via the HDRUK Innovation Gateway |
| URL | https://web.www.healthdatagateway.org/dataset/1d5b9205-dae4-4b0e-a3d3-04707875edf8 |
| Title | VirusWatch |
| Description | A community cohort study of Covid-19 that contains baseline demographics and clinical information, and includes weekly/monthly follow up data, now listed on HDR Gateway |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | peer reviewed publications |
| URL | https://web.www.healthdatagateway.org/dataset/28bb192d-d990-4f7a-b552-345684fa8704 |
| Title | Welsh Ambulance Services NHS Trust (WASD) |
| Description | The Welsh Ambulance Services NHS Trust data covers data pertaining to more than 250,000 emergency calls a year, over 50,000 urgent calls and transport over 1.3 million non-emergency patients to over 200 treatment centres throughout England and Wales. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://web.www.healthdatagateway.org/dataset/4dd97609-2753-46ed-8066-3482d6dbdb34 |
| Title | Welsh Ambulance Services NHS Trust (WAST) - Legacy |
| Description | Welsh Ambulance Services NHS Trust (WAST) - Legacy. This covers data pertaining to more than 250,000 emergency calls a year, over 50,000 urgent calls and transport over 1.3 million non-emergency patients to over 200 treatment centres throughout England and Wales. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://web.www.healthdatagateway.org/dataset/d415a5c5-8432-4a81-937f-12135ade6de7 |
| Title | Welsh Demographic Service (WDS) |
| Description | 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. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now available and linked to other key data assets within the SAIL TRE and accessible to request via the HDRUK Innovation Gateway as part of the Data and Connectivity National Core Study. This dataset is supporting the urgent COVID-19 research being conducted by the National Core Studies |
| URL | https://web.www.healthdatagateway.org/dataset/8a8a5e90-b0c6-4839-bcd2-c69e6e8dca6d |
| Description | Barts Health NHS Trust - Regional acute admissions data |
| Organisation | Barts Health NHS Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Convened cross regional group to explore feasibility of enabling rapid, near real time acute admissions data |
| Collaborator Contribution | Data curation and linkage |
| Impact | PPIE report- https://www.hdruk.ac.uk/case-studies/the-role-of-ppie-in-enabling-rapid-and-trustworthy-access-to-regional-health-data-to-support-covid-19-vaccine-research/ This collaboration is part of a cross regional collaborative group (DataLoch, Imperial, Barts, PIONEER, Southampton, Sheffield, Lancaster, Bristol and previously CIPHA) at either NHS Trust(s) or Integrated Care System (ICS) level across England and Scotland has been convened by the Data and Connectivity National Core Study (NCS) which has explored the data capability, variances in Information Governance and data access across different regions and across two phases, have implemented use cases to explore these aspects. The use cases are listed below: • Phase 1 (now complete) - Identification of thrombotic adverse events (AEs) associated with COVID19 vaccines • Phase 2 (currently underway)- two use cases implemented: - Evaluation of the effectiveness and safety of early rule out pathways for acute myocardial infarction across the United Kingdom. - Exploring variation in acute hospital admissions. Developing criteria to define an avoidable admission. |
| Start Year | 2021 |
| Description | Bristol University: D&C Regional Linked Data Group |
| Organisation | University of Bristol |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | project management, co-ordination across UK wide data custodians, funding |
| Collaborator Contribution | data provisioning, linkage and analysis |
| Impact | This collaboration is part of a cross regional collaborative group (DataLoch, Imperial, Barts, PIONEER, Southampton, Sheffield, Lancaster, Bristol and previously CIPHA) at either NHS Trust(s) or Integrated Care System (ICS) level across England and Scotland has been convened by the Data and Connectivity National Core Study (NCS) which has explored the data capability, variances in Information Governance and data access across different regions and across two phases, have implemented use cases to explore these aspects. The use cases are listed below: • Phase 1 (now complete) - Identification of thrombotic adverse events (AEs) associated with COVID19 vaccines • Phase 2 (currently underway)- two use cases implemented: - Evaluation of the effectiveness and safety of early rule out pathways for acute myocardial infarction across the United Kingdom. - Exploring variation in acute hospital admissions. Developing criteria to define an avoidable admission. |
| Start Year | 2022 |
| Description | D&C NCS/Alan Turing Research Funding Awards |
| Organisation | Alan Turing Institute |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Co-funded £2M data analytics funding call with the Alan Turing Institute (cross Research Council collaboration; MRC and ESRC). Ran funding call, managed funding programme |
| Collaborator Contribution | Co funding £1M, data analytical expertise, funding panel review |
| Impact | 23 publications to date from 9 funded projects |
| Start Year | 2021 |
| Description | DataLoch (NHS Lothian) - Regional acute admissions data |
| Organisation | University of Edinburgh |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Convened cross regional group to explore feasibility of enabling rapid, near real time acute admissions data to support urgent research |
| Collaborator Contribution | Data curation, linkage and analysis |
| Impact | PPIE report - https://www.hdruk.ac.uk/case-studies/the-role-of-ppie-in-enabling-rapid-and-trustworthy-access-to-regional-health-data-to-support-covid-19-vaccine-research/ This collaboration is part of a cross regional collaborative group (DataLoch, Imperial, Barts, PIONEER, Southampton, Sheffield, Lancaster, Bristol and previously CIPHA) at either NHS Trust(s) or Integrated Care System (ICS) level across England and Scotland has been convened by the Data and Connectivity National Core Study (NCS) which has explored the data capability, variances in Information Governance and data access across different regions and across two phases, have implemented use cases to explore these aspects. The use cases are listed below: • Phase 1 (now complete) - Identification of thrombotic adverse events (AEs) associated with COVID19 vaccines • Phase 2 (currently underway)- two use cases implemented: - Evaluation of the effectiveness and safety of early rule out pathways for acute myocardial infarction across the United Kingdom. - Exploring variation in acute hospital admissions. Developing criteria to define an avoidable admission. |
| Start Year | 2021 |
| Description | ICNARC - Data Scientist post |
| Organisation | Intensive Care National Audit and Research Centre |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Funding data scientist post to enable more rapid data sharing and onboarding of ICNARC Case Mix Programme data set to national Trusted Research Environments |
| Collaborator Contribution | Enabling wider sharing and linkage of ICNARC data to secure TREs for priority research |
| Impact | Appointment of Data Linkage and Management staff. Outcomes from appointment include linkage of ICNARC data within ONS, SAIL Databank and Scottish National Data Safe Haven Trusted Research Environments |
| Start Year | 2022 |
| Description | Imperial College London - iCARE Regional Acute admissions data |
| Organisation | Imperial College Healthcare NHS Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Convened cross regional group to explore feasibility of enabling acute admissions' data to support urgent research |
| Collaborator Contribution | Data curation, linkage and secure analysis |
| Impact | PPIE report https://www.hdruk.ac.uk/case-studies/the-role-of-ppie-in-enabling-rapid-and-trustworthy-access-to-regional-health-data-to-support-covid-19-vaccine-research/ This collaboration is part of a cross regional collaborative group (DataLoch, Imperial, Barts, PIONEER, Southampton, Sheffield, Lancaster, Bristol and previously CIPHA) at either NHS Trust(s) or Integrated Care System (ICS) level across England and Scotland has been convened by the Data and Connectivity National Core Study (NCS) which has explored the data capability, variances in Information Governance and data access across different regions and across two phases, have implemented use cases to explore these aspects. The use cases are listed below: • Phase 1 (now complete) - Identification of thrombotic adverse events (AEs) associated with COVID19 vaccines • Phase 2 (currently underway)- two use cases implemented: - Evaluation of the effectiveness and safety of early rule out pathways for acute myocardial infarction across the United Kingdom. - Exploring variation in acute hospital admissions. Developing criteria to define an avoidable admission. |
| Start Year | 2021 |
| Description | Imperial College London -enabling wider access to REACT study data |
| Organisation | Imperial College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Enabling wider access and linkage to the REACT study data set via the ONS Trusted Research Environment |
| Collaborator Contribution | Developing the Imperial TRE to enable secure data storage and further linkage of the REACT data set. Enabling wider access to UK researchers via the ONS TRE - accessible via the HDR Innovation Gateway |
| Impact | This collaboration is being funded by Data and Connectivity NCS to ensure the legacy of the REACT 1 and 2 study cohorts. The cohorts will be integrated and linked to EHR data within the Imperial Trusted Research Environment, with Data Governance process in place to enable access to approved researchers for approved research. The REACT data assets will then be made findable and accessible via the HDR Gateway |
| Start Year | 2021 |
| Description | Lancashire NHS: D&C Regional Linked Data Group |
| Organisation | Lancashire Teaching Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | project management, co-ordination across UK wide custodians, funding |
| Collaborator Contribution | data linkage, provisioning and analysis |
| Impact | This collaboration is part of a cross regional collaborative group (DataLoch, Imperial, Barts, PIONEER, Southampton, Sheffield, Lancaster, Bristol and previously CIPHA) at either NHS Trust(s) or Integrated Care System (ICS) level across England and Scotland has been convened by the Data and Connectivity National Core Study (NCS) which has explored the data capability, variances in Information Governance and data access across different regions and across two phases, have implemented use cases to explore these aspects. The use cases are listed below: • Phase 1 (now complete) - Identification of thrombotic adverse events (AEs) associated with COVID19 vaccines • Phase 2 (currently underway)- two use cases implemented: - Evaluation of the effectiveness and safety of early rule out pathways for acute myocardial infarction across the United Kingdom. - Exploring variation in acute hospital admissions. Developing criteria to define an avoidable admission. |
| Start Year | 2022 |
| Description | NCS D&C Delivery Partner: NHS Digital |
| Organisation | NHS Digital |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The UKRI NCS Data and Connectivity award is collaborating, and has contracted with, NHS Digital as a Programme delivery partner, in it's role as one of the UK wide national trusted research environments (TREs). The D&C team have mapped out a list of priority data sets and linkages that NHS Digital are contracted to onboard to their TRE and make available for research use, in parallel with key infrastructure and accreditation requirements. NCS D&C with their delivery partners will enable the development of data infrastructure and services across the UK to allow NCS priority research questions to be answered efficiently, in a transparent and trustworthy way. The Delivery partners will use the UK Health Data Research Innovation Gateway to ensure the priority datasets for COVID-19 research are findable, accessible, inter-operable and reusable (FAIR) as a single "shop window". NCS D&C team have created a 'Delivery Community' to bring together wide group of partners and stakeholders (c. 50 participants) to share progress, problem solve current issues and understand requirements. |
| Collaborator Contribution | NHS Digital are providing the following services to provide a sustainable and accessible platform for national core study research: - TRE dataset onboarding: Required to collaborate and align to identify and onboard any additional data datasets within each TRE to meet the needs of the 'vertical' national core studies . Develop and maintain metadata about each dataset which will be data assets which will be listed on the HDRUK Innovation Gateway - Provision of a streamlined and transparent approach for managing data/platform access requests from approved researchers - Delivery of a transparent information governance and approval process to enable data linkage and access for approved researchers - Provision of a secure, scalable, cloud-based TRE supporting data access for up to 100 approved researchers undertaking research to support the COVID-19 National Core Studies - Data indexing and linkage service for routine COVID-19 data assets, as required by National Core Studies. - Involvement and support for the development of federated analytics including deployment of software and APIs to agreed specification and subject to available funding - Ensuring trustworthy sustainability -publishing of Data Protection Impact Assessments and obtaining Digital Economy Act Accreditation |
| Impact | 19 priority NCS data assets now available for access via the HDRUK Innovation Gateway https://web.www.healthdatagateway.org/collection/9118411587595364 In addition, NHS Digital data sets available via the CVD-COVID/UK IMPACT data asset led by the British Heart Foundation Data Science Centre (BHF DSC) https://web.www.healthdatagateway.org/dataset/7e5f0247-f033-4f98-aed3-3d7422b9dc6d . Numerous outputs from priority research using this data asset - listed here - https://www.hdruk.ac.uk/projects/cvd-covid-uk-project/ NCS researchers now accessing NHS Digital data via the BHF DSC which has significantly reduced data access times for priority research requiring access to NHSD data |
| Start Year | 2020 |
| Description | NCS D&C Delivery Partner: Northern Ireland Honest Broker Service |
| Organisation | Health and Social Care in Northern Ireland (HSCNI) |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The UKRI NCS Data and Connectivity award is collaborating, and has contracted with, NI Honest Broker Service (NI HBS) as a Programme delivery partner, in it's role as one of the UK wide national trusted research environments (TREs). The D&C team have mapped out a list of priority data sets and linkages that NI HBS are contracted to onboard to their TRE and make available for research use, in parallel with key infrastructure and accreditation requirements. NCS D&C with their delivery partners will enable the development of data infrastructure and services across the UK to allow NCS priority research questions to be answered efficiently, in a transparent and trustworthy way. The Delivery partners will use the UK Health Data Research Innovation Gateway to ensure the priority datasets for COVID-19 research are findable, accessible, inter-operable and reusable (FAIR) as a single "shop window". NCS D&C team have created a 'Delivery Community' to bring together wide group of partners and stakeholders (c. 50 participants) to share progress, problem solve current issues and understand requirements. |
| Collaborator Contribution | NI HBS are providing the following services to provide a sustainable and accessible platform for national core study research: - TRE dataset onboarding: Required to collaborate and align to identify and onboard any additional data datasets within each TRE to meet the needs of the 'vertical' national core studies . Required to develop and maintain metadata about each dataset which will be listed on the HDRUK Innovation Gateway - Provision of a streamlined and transparent approach for managing data/platform access requests from approved researchers - Delivery of a transparent information governance and approval process to enable data linkage and access for approved researchers - Provision of a secure, scalable, cloud-based TRE supporting data access for up to 100 approved researchers undertaking research to support the COVID-19 National Core Studies - Data indexing and linkage service for routine COVID-19 data assets, as required by National Core Studies. - Involvement and support for the development of federated analytics including deployment of software and APIs to agreed specification and subject to available funding - Ensuring trustworthy sustainability -publishing of Data Protection Impact Assessments and obtaining Digital Economy Act Accreditation |
| Impact | 11 priority NCS datasets now available for access via the HDRUK Innovation Gateway https://web.www.healthdatagateway.org/search?search=NI%20HBS&publisher=ALLIANCE%20%3E%20HEALTH%20AND%20SOCIAL%20CARE%20NORTHERN%20IRELAND&tab=Datasets Outputs from the UK wide DacVaP study - utilising NI data via the NI HBS: https://www.ed.ac.uk/usher/research/projects/dac-vap |
| Start Year | 2020 |
| Description | NCS D&C Delivery Partner: Office for National Statistics |
| Organisation | Office for National Statistics |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | The UKRI NCS Data and Connectivity award is collaborating, and has contracted with, ONS as a Programme delivery partner (in addition to ONS role as co-lead for NCS D&C) in it's role as one of the UK wide national trusted research environments (TREs). The D&C team have mapped out a list of priority data sets and linkages that ONS are contracted to onboard to their TRE and make available for research use, in parallel with key infrastructure and accreditation requirements. NCS D&C with their delivery partners will enable the development of data infrastructure and services across the UK to allow NCS priority research questions to be answered efficiently, in a transparent and trustworthy way. The Delivery partners will use the UK Health Data Research Innovation Gateway to ensure the priority datasets for COVID-19 research are findable, accessible, inter-operable and reusable (FAIR) as a single "shop window". NCS D&C team have created a 'Delivery Community' to bring together wide group of partners and stakeholders (c. 50 participants) to share progress, problem solve current issues and understand requirements. |
| Collaborator Contribution | ONS are providing the following services to provide a sustainable and accessible platform for national core study research: - TRE dataset onboarding: Required to collaborate and align to identify and onboard any additional data datasets within each TRE to meet the needs of the 'vertical' national core studies . Required to develop and maintain metadata about each dataset which will be listed on the HDRUK Innovation Gateway - Provision of a streamlined and transparent approach for managing data/platform access requests from approved researchers - Delivery of a transparent information governance and approval process to enable data linkage and access for approved researchers - Provision of a secure, scalable, cloud-based TRE supporting data access for up to 100 approved researchers undertaking research to support the COVID-19 National Core Studies - Data indexing and linkage service for routine COVID-19 data assets, as required by National Core Studies. - Involvement and support for the development of federated analytics including deployment of software and APIs to agreed specification and subject to available funding - Ensuring trustworthy sustainability -publishing of Data Protection Impact Assessments and obtaining Digital Economy Act Accreditation |
| Impact | 13 priority datasets now available for access via the HDRUK Innovation Gateway https://web.www.healthdatagateway.org/search?search=&publisher=NCS%20%3E%20OFFICE%20FOR%20NATIONAL%20STATISTICS&tab=Datasets This includes the Public Health Research Database - the first time that health and administrative data has been linked in this way. This is a collaboration between NHS Digital and ONS. https://web.www.healthdatagateway.org/dataset/a325f33e-bac8-49af-896f-1e025941dae8 Numerous outputs which have informed policy and COVID response via these data sets - listed in outputs section |
| Start Year | 2020 |
| Description | NCS D&C Delivery Partner: Public Health Scotland/Edinburgh Parallel Computing Centre (EPCC) |
| Organisation | Public Health Scotland |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The UKRI NCS Data and Connectivity award is collaborating, and has contracted with, PHS/EPCC as a Programme delivery partner, in it's role as one of the UK wide national trusted research environments (TREs). The D&C team have mapped out a list of priority data sets and linkages that PHS/EPCC are contracted to onboard to their TRE and make available for research use, in parallel with key infrastructure and accreditation requirements. NCS D&C with their delivery partners will enable the development of data infrastructure and services across the UK to allow NCS priority research questions to be answered efficiently, in a transparent and trustworthy way. The Delivery partners will use the UK Health Data Research Innovation Gateway to ensure the priority datasets for COVID-19 research are findable, accessible, inter-operable and reusable (FAIR) as a single "shop window". NCS D&C team have created a 'Delivery Community' to bring together wide group of partners and stakeholders (c. 50 participants) to share progress, problem solve current issues and understand requirements. |
| Collaborator Contribution | PHS/EPCC are providing the following services to provide a sustainable and accessible platform for national core study research: - TRE dataset onboarding: Required to collaborate and align to identify and onboard any additional data datasets within each TRE to meet the needs of the 'vertical' national core studies . Required to develop and maintain metadata about each dataset which will be listed on the HDRUK Innovation Gateway - Provision of a streamlined and transparent approach for managing data/platform access requests from approved researchers - Delivery of a transparent information governance and approval process to enable data linkage and access for approved researchers - Provision of a secure, scalable, cloud-based TRE supporting data access for up to 100 approved researchers undertaking research to support the COVID-19 National Core Studies - Data indexing and linkage service for routine COVID-19 data assets, as required by National Core Studies. - Involvement and support for the development of federated analytics including deployment of software and APIs to agreed specification and subject to available funding - Ensuring trustworthy sustainability -publishing of Data Protection Impact Assessments and obtaining Digital Economy Act Accreditation |
| Impact | 19 priority NCS data assets now available for access via the HDRUK Innovation Gateway https://web.www.healthdatagateway.org/collection/4984635552758454 EPCC are also hosting the Outbreak Data Analysis Platform - currently being developed in Phase 1 |
| Start Year | 2020 |
| Description | NCS D&C Delivery Partner: SAIL databank (University of Swansea) |
| Organisation | SAIL Databank |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The UKRI NCS Data and Connectivity award is collaborating, and has contracted with, SAIL databank as a Programme delivery partner, in it's role as one of the national trusted research environments (TREs). The D&C team have mapped out a list of priority data sets and linkages that SAIL are contracted to onboard to their TRE and make available for research use, in parallel with key infrastructure and accreditation requirements. NCS D&C with their delivery partners will enable the development of data infrastructure and services across the UK to allow NCS priority research questions to be answered efficiently, in a transparent and trustworthy way. The Delivery partners will use the UK Health Data Research Innovation Gateway to ensure the priority datasets for COVID-19 research are findable, accessible, inter-operable and reusable (FAIR) as a single "shop window". NCS D&C team have created a 'Delivery Community' to bring together wide group of partners and stakeholders (c. 50 participants) to share progress, problem solve current issues and understand requirements. |
| Collaborator Contribution | SAIL are providing the following services to provide a sustainable and accessible platform for national core study research: - TRE dataset onboarding: Required to collaborate and align to identify and onboard any additional data datasets within each TRE to meet the needs of the 'vertical' national core studies . Required to develop and maintain metadata about each dataset which will be listed on the HDRUK Innovation Gateway - Provision of a streamlined and transparent approach for managing data/platform access requests from approved researchers - Delivery of a transparent information governance and approval process to enable data linkage and access for approved researchers - Provision of a secure, scalable, cloud-based TRE supporting data access for up to 100 approved researchers undertaking research to support the COVID-19 National Core Studies - Data indexing and linkage service for routine COVID-19 data assets, as required by National Core Studies. - Involvement and support for the development of federated analytics including deployment of software and APIs to agreed specification and subject to available funding - Ensuring trustworthy sustainability -publishing of Data Protection Impact Assessments and obtaining Digital Economy Act Accreditation |
| Impact | 27 priority NCS data assets now available for access via the HDRUK Innovation Gateway https://web.www.healthdatagateway.org/collection/15352639334591968 Numerous high impact research outputs which have informed the Welsh Government COVID response have been enabled via analysis of these priority data sets - included in outputs section and listed here https://saildatabank.com/saildata/projects-using-sail/ |
| Start Year | 2020 |
| Description | NCS TRE Delivery Partner - OpenSAFELY |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Funding development of OpenSAFELY to support the Longitudinal Health and Wellbeing NCS and enabling wider access to the OpenSAFELY platform for UK wide researchers, accessible and discoverable via the HDR Innovation Gateway |
| Collaborator Contribution | Supporting data analysis requirements for urgent NCS research and enabling wider access to UK wide research teams |
| Impact | Research outputs led by the OpeSAFELY and NCS teams: https://www.opensafely.org/research/ |
| Start Year | 2021 |
| Description | NIHR School for Primary Care Research |
| Organisation | National Institute for Health Research |
| Department | School for Primary Care Research |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | drafting and scoping out content for joint report on primary care data assets across the UK |
| Collaborator Contribution | academic expertise, data asset user expertise for joint report on primary care data assets across the UK |
| Impact | Publication to be submitted to peer reviewed journal March 2023 |
| Start Year | 2022 |
| Description | Outbreak Data Analysis Platform - Edinburgh and Cardiff |
| Organisation | Cardiff University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Convened UK wide group (Cardiff, Edinburgh) and other key contributors - NHS Digital, Public Health Scotland, UKHSA and other data contributors and studies such as GenoMMIC, COG UK, ICNARC to develop for the first time a UK wide Outbreak Data Analysis Platform hosted by the EPCC at University of Edinburgh |
| Collaborator Contribution | Data curation, enabling data sharing agreements, development of governance process |
| Impact | provided essential weekly updates to SAGE that guide the public health response isaric4c.net/reports/,identified host genetic mechanisms of disease, quantified the role of age, comorbid illness and obesity in disease severity created the global standard ISARIC4C score for prognostication isaric4c.net/risk, determined the impact of long Covid following hospitalisation identified the substantial effect of transmission of Covid-19 within hospitals SPI-M/SAGE report, provided key evidence underlying the choice of therapeutic agents for clinical trials provided real world data on vaccine effectiveness and failure (SAGE 87 Egan et al, Egan et al.) observed data supporting identification of high risk groups for vaccination (highlighted in No10 briefing) described the complications of Covid-19 in hospitalised patients. |
| Start Year | 2021 |
| Description | Outbreak Data Analysis Platform - Edinburgh and Cardiff |
| Organisation | University of Edinburgh |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Convened UK wide group (Cardiff, Edinburgh) and other key contributors - NHS Digital, Public Health Scotland, UKHSA and other data contributors and studies such as GenoMMIC, COG UK, ICNARC to develop for the first time a UK wide Outbreak Data Analysis Platform hosted by the EPCC at University of Edinburgh |
| Collaborator Contribution | Data curation, enabling data sharing agreements, development of governance process |
| Impact | provided essential weekly updates to SAGE that guide the public health response isaric4c.net/reports/,identified host genetic mechanisms of disease, quantified the role of age, comorbid illness and obesity in disease severity created the global standard ISARIC4C score for prognostication isaric4c.net/risk, determined the impact of long Covid following hospitalisation identified the substantial effect of transmission of Covid-19 within hospitals SPI-M/SAGE report, provided key evidence underlying the choice of therapeutic agents for clinical trials provided real world data on vaccine effectiveness and failure (SAGE 87 Egan et al, Egan et al.) observed data supporting identification of high risk groups for vaccination (highlighted in No10 briefing) described the complications of Covid-19 in hospitalised patients. |
| Start Year | 2021 |
| Description | QResearch - enabling wider access |
| Organisation | University of Oxford |
| Department | Nuffield Department of Primary Care Health Sciences |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Onboarding QResearch linked data asset to the Health Data Research Innovation Gateway to enable wider discoverability and access . |
| Collaborator Contribution | Linkage of more high value data assets (e.g ICNARC, NHSBT) and onboarding QResearch to the Gateway, developing training materials and onboarding UK wide researchers to the asset |
| Impact | Enabling QResearch to become more finable and accessible via the HDR Gateway has resulted in an uptake of UK wide researchers applying to access QResearch data. Researchers from more than 20 new institutions have now applied to access |
| Start Year | 2021 |
| Description | University of Liverpool - Regional acute admissions data |
| Organisation | University of Liverpool |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Convened cross regional group to explore feasibility of enabling rapid, near real time acute admissions data to support urgent research |
| Collaborator Contribution | Data curation, linkage and analysis |
| Impact | PPIE report: https://www.hdruk.ac.uk/case-studies/the-role-of-ppie-in-enabling-rapid-and-trustworthy-access-to-regional-health-data-to-support-covid-19-vaccine-research/ |
| Start Year | 2021 |
| Description | University of Sheffield - D&C Regional Linked Data Group |
| Organisation | University of Sheffield |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Project management, funding, co-ordination across UK wide data custodians, expertise from Pan UK Data Governance Steering Group convened by HDRUK |
| Collaborator Contribution | data provisioning, linkage, analysis |
| Impact | This collaboration is part of a cross regional collaborative group (DataLoch, Imperial, Barts, PIONEER, Southampton, Sheffield, Lancaster, Bristol and previously CIPHA) at either NHS Trust(s) or Integrated Care System (ICS) level across England and Scotland has been convened by the Data and Connectivity National Core Study (NCS) which has explored the data capability, variances in Information Governance and data access across different regions and across two phases, have implemented use cases to explore these aspects. The use cases are listed below: • Phase 1 (now complete) - Identification of thrombotic adverse events (AEs) associated with COVID19 vaccines • Phase 2 (currently underway)- two use cases implemented: - Evaluation of the effectiveness and safety of early rule out pathways for acute myocardial infarction across the United Kingdom. - Exploring variation in acute hospital admissions. Developing criteria to define an avoidable admission. |
| Start Year | 2022 |
| Title | Cohort Discovery Service |
| Description | Cohort Discovery is a new Gateway feature that will allow users to carry out a more specific search and assessment on datasets listed in the Gateway to improve the discovery of datasets. Using the tool users can search across multiple datasets to find cohorts (groups) of patients with specific, defined characteristics (e.g patients that don't smoke aged between 18-30 and who live in England). We hope the tool will save both researchers time in finding datasets they need for their research, and also save data custodians time, by minimising enquiries to them about the content of the datasets they hold. Statistical disclosure control policies are in place by default by data custodians on the query results, so low numbers of patients will be excluded to minimise any potential risk of identification. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Impact | Nine data custodians have been onboarded into the Cohort Discovery Service which covers a population of 51K subjects. Total subjects discoverable via Cohort Discovery - 41.8K from 8 datasets across: Conditions - 184 Observations - 24 Measurements - 264 Drugs/Medication - 4 Demographics - 18 |
| URL | https://www.healthdatagateway.org/about/cohort-discovery |
| Title | Data Use Register & Data Use Widget |
| Description | A data use register (also known as a data release register or list of approved projects) offers the public a clear record of how their data is being used, by who and most importantly for what purpose. The Gateway has implemented a Data Use Register to improve the transparency and visibility of research projects undertaken across our Alliance data custodians. A widget for the data use register is also available and aims to provide further transparency in the use of health data for research by making data uses more accessible. Once embedded in a custodian's website, a clickable button takes visitors from a custodian's webpage to the Gateway data use register - prefiltered to display their data uses only - in a single step. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | Improved transparency of research Improved discoverability of research Better coordination and standardisation of data use reporting |
| URL | https://web.www.healthdatagateway.org/search?search=&tab=Datauses |
| Title | Gateway Data Access Request Service |
| Description | Our ambition is for the Gateway to support a streamlined, proportionate approach to access requests based on the five safes model for research and innovation uses with a clearpublic benefit, in line with the Principles for Participation. We aim to make life easier for both requestors and decision makers through a combinationof automation, built-in validation, transparency of progress and the capability to hostvirtual data access request panels. The intention is to build on existing cross-sector best practice both nationally across the UKand internationally. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | For data custodians with existing 'in house' web-based workflow solutions, the module provides validated inputs to their approvals processes andreceive time stamped progress updates for key process points. For data custodians with 'MS Word' based documentation and offline workflow, the module helps them harmonise and streamline theirapproach and provide a scalable, web-based workflow. For new data custodians, the module provides the opportunity to move straight to a 'best of breed' web-based access management request solution. The Gateway provides allows researchers communicate with data custodians directly and confirm data sharing requirements before requesting access, which saves time. |
| URL | https://www.healthdatagateway.org/about/data-access-request-process |
| Title | Gateway Search Service |
| Description | The Health Data Research Innovation Gateway is a common entry point for researchers and innovators to search for and find datasets of interest and to request access to. It is possible to search for health datasets and health data assets via a keyword search and filtering options. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2020 |
| Open Source License? | Yes |
| Impact | Gateway search is based on the HDR UK dataset specification, which is an Alliance-approved standard for describing health datasets, reviewed and recreated with researcher discovery in mind. It includes summary information about the dataset and descriptions of the technical detail of the tables and columns held within the dataset. The standard descriptions allow potential data applicants to understand and assess the usability of data without enquiring directly, saving time for everyone. |
| URL | https://web.www.healthdatagateway.org/search?search=&datasetSort=latest&tab=Datasets |
| Title | Health Data Research UK GitHub Repository |
| Description | Open-source code for the Innovation Gateway |
| Type Of Technology | Webtool/Application |
| Year Produced | 2020 |
| Open Source License? | Yes |
| Impact | Open-source code for the Innovation Gateway |
| URL | https://github.com/HDRUK |
| Description | Chair Scottish Government COVID-19 CMO Advisory Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | N/A |
| Year(s) Of Engagement Activity | 2020,2021,2022 |
| Description | Chair Scottish Government Committee Pandemic Preparedness |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | N/A |
| Year(s) Of Engagement Activity | 2022 |
| Description | Cross National Core Study Impact Report |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | The Data and Connectivity NCS coordinates a quarterly impact report across all six National Core Studies - highlighting policy relevant research insights to policy makers and the public. This replaces the previous reports to SAGE, and will also include a monthly brief report on key research insights and data available across the UK to SAGE and UK wide policy makers |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/wp-content/uploads/2022/03/2021_Q4_NCS-Impact-Reportv2.pdf |
| Description | Data and Connectivity Lay Advisory Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | The Lay Advisory Group for the Data and Connectivity NCS is composed of 4 lay members, who advise on public involvement activities and strategy for the NCS. It meets monthly |
| Year(s) Of Engagement Activity | 2020,2021,2022 |
| URL | https://www.hdruk.ac.uk/covid-19-data-and-connectivity/ |
| Description | Data and Connectivity NCS Case Study - Combining data to identify ethnic COVID-19 inequalities |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Blog /case study outlining how Data and Connectivity NCS researchers enabled key insights into ethnicity and COVID-19, using data from the joint NHS Digital/ONS Public Health Research Database |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/case-studies/combining-data-to-identify-ethnic-covid-19-inequalities/ |
| Description | Data and Connectivity NCS Case Study - how public insights informed COVID-19 vaccine research |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Blog outlining how the Data and Connectivity NCS involved the public in shaping prioritised research questions and priorities for COVID-19 vaccine research |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.hdruk.ac.uk/case-studies/the-role-of-ppie-in-enabling-rapid-and-trustworthy-access-to-re... |
| Description | Data and Connectivity NCS Case Study - involving the public in health data research |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Blog published on HDRUK website by Sarah Bunney, a researcher funded by Data and Connectivity NCS Rapid Funding Call |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.hdruk.ac.uk/news/why-ppie-is-so-important-to-health-data-research-dr-sarah-bunney-imperi... |
| Description | Data and Connectivity NCS Delivery Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | The Data and Connectivity NCS Delivery Group brings together the COVID-19 UK health data community - including the national Trusted Research Environments, researchers, data custodians, lay members of D&C and key stakeholders such as UKRI, NIHR to report on delivery of the Data and Connectivity NCS and highlight current and emerging data and connectivity needs to inform policy and operational response |
| Year(s) Of Engagement Activity | 2021,2022 |
| URL | https://www.hdruk.ac.uk/covid-19-data-and-connectivity/ |
| Description | Data and Connectivity NCS Public webpages |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Data and Connectivity NCS webpage - which outlines how the study involves the public |
| Year(s) Of Engagement Activity | 2020,2021,2022 |
| URL | https://www.hdruk.ac.uk/covid-19-data-and-connectivity/information-for-the-public/ |
| Description | NCS Data Assets Brochure |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Produced 'NCS Data Assets Brochure' aimed at researchers - listing all data now available and how to access via national TRE network |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.hdruk.ac.uk/wp-content/uploads/2021/08/Data-for-COVID-research-across-the-UK-NCS-Brochur... |
| Description | National Core Studies Symposium |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | The COVID-19 National Core Studies Symposium took place on Thursday 24 June 2021, co ordinated by HDRUK. Attended by more than 467 people from 26 countries, the symposium attracted patients, members of the public and colleagues from government, academia, industry, NHS, charities and the media. Speakers including Patrick Vallance, Fiona Fox, Jeremy Farrar and Ottoline Leyser shared their insights on tackling a pandemic while study leads, senior academics, and front-line research scientists showcased how science has informed the policy and healthcare response to the pandemic both in the UK and internationally. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.gov.uk/government/publications/the-national-core-studies-programme |
| Description | National Core Studies Symposium |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Scientific symposium held to showcase the National Core Studies, organised and co-ordinated by D&C |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.hdruk.ac.uk/hdr-uk-scientific-conference-2021-ncs-symposium-slides-recordings/ |
| Description | Participant UK Government SAGE |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Through the Data and Connectivity NCS, HDRUK convened weekly then fortnightly calls bringing together the national health data community to report on emerging insights and data needs. A regular report was submitted to SAGE with most recent research insights and update on health data available via the national TREs |
| Year(s) Of Engagement Activity | 2020,2021,2022 |
| Description | Patient and Public Group workshop |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | We invited 18 members of the public to participate in a workshop to understand public perspectives in making regional, linked health data available for research use, to support vaccine safety research. We established a working group of PPIE leads from the three regional organisations, as well as from HDR UK and a lay representative to collaboratively design the workshop and write a 'pre-read' to send to participants ahead of the workshop to build capacity and understanding of the project. Including a lay representative helped make sure the workshop design and materials would be appropriate and accessible for the public. After a short introductory session, attendees were divided into three breakout rooms based on their location relevant to the three regional organisations. Each breakout room had a researcher, acting as a 'content lead' to answer technical questions, as well as an expert PPIE facilitator. The workshop identified three main themes that were most important to the public: Firstly the baseline for acceptability is that all research, data access, linking and sharing must be for the benefit of patients and the public. The role of the patient/public was also discussed in detail and in particular how much responsibility is with patients and the public to be actively seeking to find out about how their data is being used, or if researchers need to be providing that information more clearly. Finally there were no concerns around additional data linkages from national data sets being made to routine health data to support this project and other urgent pandemic research. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/case-studies/the-role-of-ppie-in-enabling-rapid-and-trustworthy-access-to-re... |
| Description | Presentation at UKHSA event - Learning from the National Core Studies |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation by Lara Edwards, D&C NCS Programme Director to UKHSA, along with the other National Core Studies, on impact and legacy of the NCS |
| Year(s) Of Engagement Activity | 2021 |
| Description | Production of guidelines for including PPIE in research funding calls |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | The D&C NCS Lay Advisory Group co produced guidance for research funders and researchers on how to effectively incorporate PPIE into the research funding call process. This was shared and incorporated by other National Core Studies within their funding calls |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.hdruk.ac.uk/case-studies/data-and-connectivity-rapid-funding-call-a-guide-to-embedding-p... |
| Description | Public webinar - Supporting COVID-19 Vaccine Safety Research |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | In November 2021 Data and Connectivity NCS held an online and free open-door event to all members of the public to hear from UK wide experts who outlined and gave insight into their research on vaccine safety, using the NCS data assets |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.hdruk.ac.uk/news/covid-19-vaccine-safety-research/ |
| Description | Public workshop to inform work to enable rapid, acute admissions data for urgent COVID-19 research |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Workshop held with members of the public to obtain public perception on enabling secure, researcher access to regional health data to support urgent COVID-19 research |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.hdruk.ac.uk/case-studies/the-role-of-ppie-in-enabling-rapid-and-trustworthy-access-to-re... |
| Description | Regional Linked Health Data - Frontiers Meeting |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Frontiers meeting of 8-9 Integrated Care System Regions across Scotland and England, who have participated in the Regional Linked Health Data Group, exploring enhanced value of regional level, more granular data for research in addition to data flows currently available at national level. Presented Phase 1 of this work and plans for Phase 2 - scaling up and implementing 2 use cases using regional data to explore characteristics of avoidable hospital admissions across the UK and evaluation of clinical pathway for chest pain. NHSE Data for R&D programme also attended and presented plans for regional SDE funding |
| Year(s) Of Engagement Activity | 2022 |
| Description | Reports to SAGE and engagement |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Through the Data and Connectivity NCS, HDRUK convened weekly then fortnightly calls bringing together the national health data community to report on emerging insights and data needs. A regular report was submitted to SAGE with most recent research insights and update on health data available via the national TREs |
| Year(s) Of Engagement Activity | 2020,2021,2022 |
| URL | https://www.hdruk.ac.uk/covid-19/our-work-to-help-sage/our-previous-reports-to-sage/ |
| Description | Series of public video blogs |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Series of 4 minute video blogs aimed at the public with high profile researchers outlining their research insights using NCS data assets |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.hdruk.ac.uk/covid-19-data-and-connectivity/data-and-connectivity-videos/ |
| Description | Series of videos for the public showcasing the latest COVID-19 research led by D&C researchers |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Series of video blogs for the public which explain in lay terms progress and current studies in COVID-19 research |
| Year(s) Of Engagement Activity | 2021,2022 |
| URL | https://www.hdruk.ac.uk/covid-19-data-and-connectivity/embedding-the-patient-and-public-voice-in-the... |
| Description | Workshops for researchers - how to access NCS data |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Workshop held in September 2021 aimed at UKRI funded researchers (and co produced with UKRI) to increase research pull to NCS data assets and national TRE network Repeated also with Kings College London in December 2021, Lara Edwards invited by Professor Irene Higginson to present at Cicely Saunders Institute monthly seminar |
| Year(s) Of Engagement Activity | 2021,2022 |