Health Data Research UK - UK Regional Networks
Lead Research Organisation:
Health Data Research UK
Department Name: UNLISTED
Abstract
Health Data Research UK is a UK-wide Institute which brings together a wide variety of organisations across academia, the NHS and wider public sector, charities and industry working in conjunction with the public and patients to use health-related data to make discoveries that can improve health and wellbeing in the UK and globally. These interests and opportunities are brought together through a number of UK Regional Networks based in Cambridge, London, the Midlands, North (of England), Oxford, Scotland, South-West (of England) and Wales and Northern Ireland. These support and ensure that resources and new knowledge is shared across the Institute and that the benefits from the Institute's research reach the whole of the UK population.
Technical Summary
This work is funded by the UKRI Medical Research Council, UKRI Engineering and Physical Sciences Research Council, UKRI Economic and Social Research Council, Department of Health and Social Care, National Institute for Health Research (England), Chief Scientist Office (Scottish Government), Health and Care Research Wales, Public Health Agency HSC (Northern Ireland), British Heart Foundation and Cancer Research UK
HDR UK's core capabilities and capacity is reflected in a number of UK Regional Networks comprising HDR UK Cambridge, HDR UK London, HDR UK Midlands, HDR UK North, HDR UK Oxford, HDR UK Scotland, HDR UK South-West and HDR Wales and Northern Ireland.
HDR UK regional funding has been transformational in promoting joint working between partners. This funding allows the Institute to benefit from the health data science expertise and infrastructure across the UK and globally, working with regional NHS, academic and industrial ecosystems to deliver the Institute’s mission in partnership. The Regional Networks will inform best use of UK-wide local, regional and national data assets and engage researchers across the four nations to ensure that the benefits reach the whole UK population. The Networks will represent the health research data community in their region. They will build and maintain strong links with colleagues in key regional data custodian organisations and facilities, as well as NIHR Biomedical Research Centres, companies, charities and academic groups across the UK.
The UK Regional Networks will:
1. Enhance regional partnership and collaboration with HDR UK that will enable participation in existing and future Driver Programmes and active participation in Infrastructure and Services to address regional and national priorities
2. Work with regional partners including universities, Academic Health Science Networks (AHSNs) and NHS bodies to speed up adoption of health data science innovation into practice
3. Act as a focus of investment leverage for future HDR UK scientific, training and infrastructure.
HDR UK's core capabilities and capacity is reflected in a number of UK Regional Networks comprising HDR UK Cambridge, HDR UK London, HDR UK Midlands, HDR UK North, HDR UK Oxford, HDR UK Scotland, HDR UK South-West and HDR Wales and Northern Ireland.
HDR UK regional funding has been transformational in promoting joint working between partners. This funding allows the Institute to benefit from the health data science expertise and infrastructure across the UK and globally, working with regional NHS, academic and industrial ecosystems to deliver the Institute’s mission in partnership. The Regional Networks will inform best use of UK-wide local, regional and national data assets and engage researchers across the four nations to ensure that the benefits reach the whole UK population. The Networks will represent the health research data community in their region. They will build and maintain strong links with colleagues in key regional data custodian organisations and facilities, as well as NIHR Biomedical Research Centres, companies, charities and academic groups across the UK.
The UK Regional Networks will:
1. Enhance regional partnership and collaboration with HDR UK that will enable participation in existing and future Driver Programmes and active participation in Infrastructure and Services to address regional and national priorities
2. Work with regional partners including universities, Academic Health Science Networks (AHSNs) and NHS bodies to speed up adoption of health data science innovation into practice
3. Act as a focus of investment leverage for future HDR UK scientific, training and infrastructure.
Organisations
- Health Data Research UK (Lead Research Organisation)
- NHS England (Collaboration)
- University College London (Collaboration)
- UNIVERSITY OF LEICESTER (Collaboration)
- The Wellcome Trust Sanger Institute (Collaboration)
- National Institute for Health Research (Collaboration)
- UNIVERSITY OF CAMBRIDGE (Collaboration)
- OXFORD UNIVERSITY HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- Cancer Research UK (Collaboration)
- Baker IDI Heart and Diabetes Institute (Collaboration)
- EMBL European Bioinformatics Institute (EMBL - EBI) (Collaboration)
- Human Technopole (Collaboration)
- ELIXIR (Collaboration)
- UNIVERSITY OF BIRMINGHAM (Collaboration)
- CAMBRIDGE UNIVERSITY HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- SWANSEA UNIVERSITY (Collaboration)
- UNIVERSITY OF LIVERPOOL (Collaboration)
- University of Bristol (Collaboration)
Publications
Akbari P
(2023)
A genome-wide association study of blood cell morphology identifies cellular proteins implicated in disease aetiology.
in Nature communications
Allen S
(2023)
Recommendations for laboratory workflow that better support centralised amalgamation of genomic variant data: findings from CanVIG-UK national molecular laboratory survey.
in Journal of medical genetics
Apergis-Schoute A
(2024)
Perseveration and Shifting in Obsessive-Compulsive Disorder as a Function of Uncertainty, Punishment, and Serotonergic Medication
in Biological Psychiatry Global Open Science
Atkinson MD
(2023)
The coding of telephone consultations in UK primary care databases: are we picking up all the calls?
in BMC research notes
Aung N
(2023)
Association of Longer Leukocyte Telomere Length With Cardiac Size, Function, and Heart Failure.
in JAMA cardiology
Avgerinou C
(2023)
Trends in incidence of recorded diagnosis of osteoporosis, osteopenia, and fragility fractures in people aged 50 years and above: retrospective cohort study using UK primary care data.
in Osteoporosis international : a journal established as result of cooperation between the European Foundation for Osteoporosis and the National Osteoporosis Foundation of the USA
Azcoaga-Lorenzo A
(2023)
Maternal multimorbidity and preterm birth in Scotland: an observational record-linkage study.
in BMC medicine
Bandyopadhyay A
(2023)
Factors associated with low school readiness, a linked health and education data study in Wales, UK.
in PloS one
Barclay M
(2023)
Phenotypes and rates of cancer-relevant symptoms and tests in the year before cancer diagnosis in UK Biobank and CPRD Gold.
in PLOS digital health
| Guideline Title | SCORE2 |
| Description | Availability of the updated new health risk calculator SCORE2 an help prevent heart attacks and strokes in people with type 2 diabetes. |
| Geographic Reach | Europe |
| Policy Influence Type | Citation in clinical guidelines |
| URL | https://www.escardio.org/Guidelines/Clinical-Practice-Guidelines/CVD-and-Diabetes-Guidelines |
| Description | Contributed to several workshop with UKRI and the Wellcome Trust to shape their sustainable funding policies. Loic Lannelongue |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Description | HDRUK Wales and the Welsh Criminal Justice Board |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | Requirement by the French DEFRA to use our Green Algorithms calculator to apply to one of their AI funding calls. Loic Lannelongue |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Description | ADVANCING PRIMARY PREVENTION STRATEGIES FOR COMPLEX DISEASES |
| Amount | £73,459 (GBP) |
| Organisation | Health Data Research UK |
| Sector | Private |
| Country | United Kingdom |
| Start | 09/2023 |
| End | 09/2026 |
| Description | CARELINK Wales - Comprehensive Analysis of Risk factors and outcomes for vulnerable children through LINKed Welsh data. |
| Amount | £416,569 (GBP) |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | |
| Description | Concomitant primary prevention of multiple chronic diseases through data-driven approaches mobilising population-wide longitudinal health records |
| Amount | £2,000,000 (GBP) |
| Funding ID | NIHR303137 |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2023 |
| End | 12/2028 |
| Description | Deliberative workshops with public members: establishing trust in the use of synthetic data [DELIMIT] |
| Amount | £120,893 (GBP) |
| Organisation | United Kingdom Research and Innovation |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2024 |
| End | 01/2025 |
| Description | Efficient AI tools for equitable handling of missing values in population-wide e-health records to advance prevention of chronic diseases |
| Amount | £618,984 (GBP) |
| Funding ID | EP/Y017757/1 |
| Organisation | Engineering and Physical Sciences Research Council (EPSRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2023 |
| End | 04/2025 |
| Description | Impact and inequalities of winter pressures in primary care: providing the evidence base for mitigation strategies |
| Amount | £2,200,000 (GBP) |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2024 |
| End | 02/2027 |
| Description | Impact of COVID-19 on the association between Type 2 diabetes and incidence of cardiovascular diseases |
| Amount | £49,928 (GBP) |
| Organisation | University of Cambridge |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 05/2023 |
| End | 04/2024 |
| Description | Investigating transportablility of cancer detection models across datasets and time using population-wide electronic health data |
| Amount | £90,175 (GBP) |
| Organisation | University of Cambridge |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 01/2023 |
| End | 12/2023 |
| Description | Longitudinal metabolomic profiles and cardiometabolic diseases |
| Amount | £49,950 (GBP) |
| Funding ID | RG96157 |
| Organisation | British Heart Foundation (BHF) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 11/2023 |
| End | 09/2024 |
| Description | MRC Health collaboration with the Helmholtz Association |
| Amount | £398,000 (GBP) |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2023 |
| Description | Northern Health Futures Hub |
| Amount | £3,359,256 (GBP) |
| Funding ID | EP/X031012/1 |
| Organisation | Engineering and Physical Sciences Research Council (EPSRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 11/2023 |
| End | 10/2026 |
| Description | Optimising Structured Medication Reviews for Older People with Severe Frailty and Care Home Residents to Reduce Overprescribing and Associated Inequalities |
| Amount | £1,101,622 (GBP) |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 11/2023 |
| End | 10/2026 |
| Description | The South Yorkshire Digital Health Hub |
| Amount | £3,211,469 (GBP) |
| Funding ID | EP/X03075X/1 |
| Organisation | Engineering and Physical Sciences Research Council (EPSRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2023 |
| End | 08/2026 |
| Description | The effect of the COVID-19 pandemic on outcomes in pregnant women with pre-existing cardiovascular disease |
| Amount | £49,070 (GBP) |
| Organisation | University of Cambridge |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 05/2023 |
| End | 04/2024 |
| Description | Validation of SCORE2 10-year cardiovascular disease risk prediction models before and after the Covid-19 pandemic in the population of England |
| Amount | £49,228 (GBP) |
| Organisation | University of Cambridge |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 05/2023 |
| End | 04/2024 |
| Title | SCORE2 Diabetes (HDRUK Cambridge) |
| Description | . The SCORE2-Diabetes cardiovascular risk prediction model was published by HDR UK Cambridge researchers (https://academic.oup.com/eurheartj/article/44/28/2544/7185610). This new, calibrated algorithm will enhance identification of individuals at higher risk of developing cardiovascular disease across Europe, and will help inform public health policy. |
| Type Of Material | Model of mechanisms or symptoms - human |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | SCORE2-Diabetes, a new algorithm developed, calibrated, and validated to predict 10-year risk of CVD in individuals with type 2 diabetes, enhances identification of individuals at higher risk of developing CVD across Europe. |
| URL | https://academic.oup.com/eurheartj/article/44/28/2544/7185610 |
| Title | UK Longitudinal Linkage Collaboration |
| Description | The UK Longitudinal Linkage Collaboration (UK LLC) is the national Trusted Research Environment for longitudinal research. Led by the Universities of Bristol and Edinburgh, in collaboration with UCL, SeRP UK, Swansea University and the University of Leicester, it is a collaborative endeavour with many of the UK's most established longitudinal studies. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | Currently 29 projects approved to access and use linked cohort and EHR data within the UKLLC. https://ukllc.ac.uk/data-use-register 4 x publications from projects utilising UK LLC data https://ukllc.ac.uk/publication-data |
| URL | https://ukllc.ac.uk/ |
| Title | eCamCVD Database (HDRUK Cambridge) |
| Description | eCamCVD comprises person-level data from Cambridge University Hospitals electronic health records (EHR) for patients receiving medical care related to cardiovascular disease. The EHR includes, but is not limited to, data from the electronic hospital notes system (Epic), the imaging system (PACS), and other relevant hospital informant systems. The database will include person-level structured data on demographics, length of hospital stay, in-hospital deaths, diagnoses, procedures, imaging, pathology reports, laboratory results, physical measurements and vital signs, clinical referrals and patient medications prior to admission, during admission and on discharge from hospital, as well as on outpatient, emergency department and critical care episodes. eCamCVD will be available for bona fide UK researchers to access |
| Type Of Material | Database/Collection of data |
| Year Produced | 2023 |
| Provided To Others? | No |
| Impact | The eCamCVD database is an excellent example of partnership with multiple organisations (Cambridge University Hospitals Trust; the East of England sub-national Secure Data Environment (SDE); the Cambridge Mathematics of Information in Healthcare Hub; the BHF Cambridge Centre for Research Excellence; the NIHR Cambridge Biomedical Research Centre), and leveraged support from some of these organisations, resulting in an enduring resource for the UK research community. eCamCVD is a driver project in the East of England sub-national SDE. |
| Description | CD3 and HDRUK Oxford |
| Organisation | Cancer Research UK |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | The HDRUK Oxford team have contributed to the formation of a new collaboration between Cancer Research UK, NHS England and Health Data Research UK (the CD3 initiative) which aims to leverage the UK's population-scale electronic health record infrastructure and its strengths in cancer multi-omics, epidemiology, advanced analytics, as well as its participatory approach to research. |
| Collaborator Contribution | Expertise, leadership |
| Impact | none as yet |
| Start Year | 2023 |
| Description | ECHILD study and HDRUK Cambridge |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK Cambridge is collaborating with UCL via the Social and Environmental determinants of Health programme, where the common goal is to enhance Genomics England and eCHILD datasets to better understand developmental disorders. |
| Collaborator Contribution | genomic and health data linkage expertise |
| Impact | none as yet |
| Start Year | 2023 |
| Description | EMBL EBI and HDRUK Cambridge |
| Organisation | EMBL European Bioinformatics Institute (EMBL - EBI) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Dr Helen Parkinson is part of the leadership team for the HDR UK Phenotype library led by HDRUK Cambridge. Her department at EMBL-EBI also continues to bring significant leveraged support to HDR UK Cambridge, e.g. through core-funded staff contributions, cloud infrastructure, and grant funding that helps support specific HDR UK projects |
| Collaborator Contribution | Leveraging grant funding, expertise |
| Impact | NA |
| Start Year | 2023 |
| Description | Genomic Medicine collaboration |
| Organisation | The Wellcome Trust Sanger Institute |
| Department | Human Genetics |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | This collaboration forms a work-stream in the HDR UK Molecules to Health Records driver programme, and aims to understand causes of neurodevelopmental disorders better. I provide overall leadership for the programme. |
| Collaborator Contribution | The collaboration comprises researchers from the University of Oxford (led by Professor Stephan Sanders), the Wellcome Sanger Institute (led by Professor Matt Hurles), UCL (led by Professor Ruth Gilbert), and the University of Cambridge (led by Dr Richard Bethlehem). These partners bring multi-disciplinary expertise (described below), as well as leadership of specific data resources that will be used for this research (e.g. ECHILD, Deciphering Developmental Disorders, NHS neuro-imaging data). All partners will contribute to creating a novel, multi-dimensional data resource, and the analysis of these data. |
| Impact | No outcomes thus far. The collaboration is multi-disciplinary, comprising: Sanders group - paediatric neurogenetics Hurles group - genetics of developmental disorders Gilbert group - social epidemiology Bethlehem group - neuroinformatics and neuroimaging |
| Start Year | 2023 |
| Description | Genomic Medicine collaboration |
| Organisation | University College London |
| Department | Institute of Child Health |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | This collaboration forms a work-stream in the HDR UK Molecules to Health Records driver programme, and aims to understand causes of neurodevelopmental disorders better. I provide overall leadership for the programme. |
| Collaborator Contribution | The collaboration comprises researchers from the University of Oxford (led by Professor Stephan Sanders), the Wellcome Sanger Institute (led by Professor Matt Hurles), UCL (led by Professor Ruth Gilbert), and the University of Cambridge (led by Dr Richard Bethlehem). These partners bring multi-disciplinary expertise (described below), as well as leadership of specific data resources that will be used for this research (e.g. ECHILD, Deciphering Developmental Disorders, NHS neuro-imaging data). All partners will contribute to creating a novel, multi-dimensional data resource, and the analysis of these data. |
| Impact | No outcomes thus far. The collaboration is multi-disciplinary, comprising: Sanders group - paediatric neurogenetics Hurles group - genetics of developmental disorders Gilbert group - social epidemiology Bethlehem group - neuroinformatics and neuroimaging |
| Start Year | 2023 |
| Description | Genomic Medicine collaboration |
| Organisation | University of Cambridge |
| Department | Department of Psychology |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | This collaboration forms a work-stream in the HDR UK Molecules to Health Records driver programme, and aims to understand causes of neurodevelopmental disorders better. I provide overall leadership for the programme. |
| Collaborator Contribution | The collaboration comprises researchers from the University of Oxford (led by Professor Stephan Sanders), the Wellcome Sanger Institute (led by Professor Matt Hurles), UCL (led by Professor Ruth Gilbert), and the University of Cambridge (led by Dr Richard Bethlehem). These partners bring multi-disciplinary expertise (described below), as well as leadership of specific data resources that will be used for this research (e.g. ECHILD, Deciphering Developmental Disorders, NHS neuro-imaging data). All partners will contribute to creating a novel, multi-dimensional data resource, and the analysis of these data. |
| Impact | No outcomes thus far. The collaboration is multi-disciplinary, comprising: Sanders group - paediatric neurogenetics Hurles group - genetics of developmental disorders Gilbert group - social epidemiology Bethlehem group - neuroinformatics and neuroimaging |
| Start Year | 2023 |
| Description | Genomic Medicine collaboration |
| Organisation | University of Oxford |
| Department | Department of Paediatrics |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | This collaboration forms a work-stream in the HDR UK Molecules to Health Records driver programme, and aims to understand causes of neurodevelopmental disorders better. I provide overall leadership for the programme. |
| Collaborator Contribution | The collaboration comprises researchers from the University of Oxford (led by Professor Stephan Sanders), the Wellcome Sanger Institute (led by Professor Matt Hurles), UCL (led by Professor Ruth Gilbert), and the University of Cambridge (led by Dr Richard Bethlehem). These partners bring multi-disciplinary expertise (described below), as well as leadership of specific data resources that will be used for this research (e.g. ECHILD, Deciphering Developmental Disorders, NHS neuro-imaging data). All partners will contribute to creating a novel, multi-dimensional data resource, and the analysis of these data. |
| Impact | No outcomes thus far. The collaboration is multi-disciplinary, comprising: Sanders group - paediatric neurogenetics Hurles group - genetics of developmental disorders Gilbert group - social epidemiology Bethlehem group - neuroinformatics and neuroimaging |
| Start Year | 2023 |
| Description | HDRUK Midlands and Regional NIHR BRCs |
| Organisation | National Institute for Health Research |
| Department | NIHR Nottingham Biomedical Research Centre |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Awareness raised amongst community. Joint working across the regional NIHR BRCs and NHS England SDEs. Facilitated by HDR UK Midlands . |
| Collaborator Contribution | Scientific leadership and expertise, opportunities for collaborative working and leveraged funding |
| Impact | Regional BRC's and SDE's presented at annual event. HDR UK Midlands presentation at Nottingham BRC. Joint workshop between HDR Midlands and Birmingham BRC. Lead for Birmingham, Leicester and Nottingham BRCs Associate Director and part of HDR Midlands Leadership Team. |
| Start Year | 2023 |
| Description | HDRUK Midlands and Regional NIHR BRCs |
| Organisation | University of Leicester |
| Department | NIHR Biomedical Research Centre |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Awareness raised amongst community. Joint working across the regional NIHR BRCs and NHS England SDEs. Facilitated by HDR UK Midlands . |
| Collaborator Contribution | Scientific leadership and expertise, opportunities for collaborative working and leveraged funding |
| Impact | Regional BRC's and SDE's presented at annual event. HDR UK Midlands presentation at Nottingham BRC. Joint workshop between HDR Midlands and Birmingham BRC. Lead for Birmingham, Leicester and Nottingham BRCs Associate Director and part of HDR Midlands Leadership Team. |
| Start Year | 2023 |
| Description | HDRUK Regional Network and HDRUK London |
| Organisation | Swansea University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK London led a meeting across HDRUK Regional Network to stimulate inter-regional collaboration This included HDRUK North HDRUK Wales, HDRUK South West and HDRUK Midlands. Meetings have focused on our approach to delivering an inter-regional methods pilot focusing on high-cost drug data / climate data. These initial meetings have resulted in grant development meetings and ongoing work to apply for the 2023 NIHR Team Science Award Round 1 - Multiple Long Term Conditions | NIHR grant to take forward work on multi-morbidity and environmental impact of medicines. |
| Collaborator Contribution | Expertise, health data ecosystem and scientific leadership |
| Impact | none yet |
| Start Year | 2023 |
| Description | HDRUK Regional Network and HDRUK London |
| Organisation | University of Birmingham |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK London led a meeting across HDRUK Regional Network to stimulate inter-regional collaboration This included HDRUK North HDRUK Wales, HDRUK South West and HDRUK Midlands. Meetings have focused on our approach to delivering an inter-regional methods pilot focusing on high-cost drug data / climate data. These initial meetings have resulted in grant development meetings and ongoing work to apply for the 2023 NIHR Team Science Award Round 1 - Multiple Long Term Conditions | NIHR grant to take forward work on multi-morbidity and environmental impact of medicines. |
| Collaborator Contribution | Expertise, health data ecosystem and scientific leadership |
| Impact | none yet |
| Start Year | 2023 |
| Description | HDRUK Regional Network and HDRUK London |
| Organisation | University of Bristol |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK London led a meeting across HDRUK Regional Network to stimulate inter-regional collaboration This included HDRUK North HDRUK Wales, HDRUK South West and HDRUK Midlands. Meetings have focused on our approach to delivering an inter-regional methods pilot focusing on high-cost drug data / climate data. These initial meetings have resulted in grant development meetings and ongoing work to apply for the 2023 NIHR Team Science Award Round 1 - Multiple Long Term Conditions | NIHR grant to take forward work on multi-morbidity and environmental impact of medicines. |
| Collaborator Contribution | Expertise, health data ecosystem and scientific leadership |
| Impact | none yet |
| Start Year | 2023 |
| Description | HDRUK Regional Network and HDRUK London |
| Organisation | University of Liverpool |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK London led a meeting across HDRUK Regional Network to stimulate inter-regional collaboration This included HDRUK North HDRUK Wales, HDRUK South West and HDRUK Midlands. Meetings have focused on our approach to delivering an inter-regional methods pilot focusing on high-cost drug data / climate data. These initial meetings have resulted in grant development meetings and ongoing work to apply for the 2023 NIHR Team Science Award Round 1 - Multiple Long Term Conditions | NIHR grant to take forward work on multi-morbidity and environmental impact of medicines. |
| Collaborator Contribution | Expertise, health data ecosystem and scientific leadership |
| Impact | none yet |
| Start Year | 2023 |
| Description | HDRUK Wales and ELIXIR Network |
| Organisation | ELIXIR |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | UK SeRP (Swansea) has been accepted into the ELIXIR, as part of the UK Node https://elixiruknode.org |
| Collaborator Contribution | health data infrastructure expertise and technical leadership |
| Impact | not yet |
| Start Year | 2023 |
| Description | Human Technopole Collaboration |
| Organisation | Human Technopole |
| Country | Italy |
| Sector | Charity/Non Profit |
| PI Contribution | Providing samples from UK and Asian cohorts |
| Collaborator Contribution | proteomic assays |
| Impact | None yet |
| Start Year | 2021 |
| Description | NHS England East of England SDE and HDRUK Cambridge |
| Organisation | NHS England |
| Department | NHS East of England |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | HDRUK Cambridge are key stakeholders with the East of England sub-national Secure Data Environment; regular meetings ensure join up and coordinated working |
| Collaborator Contribution | expertise, networking |
| Impact | none as yet |
| Start Year | 2023 |
| Description | NIHR Cambridge BRC and HDRUK Cambridge |
| Organisation | National Institute for Health Research |
| Department | NIHR Cambridge Biomedical Research Centre |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK Cambridge researchers have close collaborative links with major cognate initiatives in the Cambridge ecosystem, including the NIHR Cambridge Biomedical Research Centre and the Cambridge BHF Centre of Research Excellence. Additional support is received through both of these initiatives. Professors Inouye and Wood lead the Data Science and Population Science theme of the Cambridge BRC, which brings substantial synergy and added value to HDR UK Cambridge, particularly in the areas of i) the use of biostatistics, machine learning and artificial intelligence (AI) for equitable improvements to healthcare and ii) combining multiple domains of information (such as genetics, imaging, test results and health records) from millions of UK individuals to improve understanding, treatment and prediction of multi-morbidity and disease. |
| Collaborator Contribution | expertise, leveraged funding, collaborations |
| Impact | Numerous collaborative projects and peer reviewed papers |
| Start Year | 2023 |
| Description | NIHR Oxford BRC and HDRUK Oxford |
| Organisation | Oxford University Hospitals NHS Foundation Trust |
| Department | NIHR Oxford Biomedical Research Centre |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDRUK Programme Manager joint funded by the NIHR Oxford BRC - managing both BRC4 Translational Data Science (TDS) theme and Oxford Regional Network to bring together key health data science efforts across the Oxford region. |
| Collaborator Contribution | Coordination, collaborative working and expertise |
| Impact | none as yet |
| Start Year | 2023 |
| Description | The Cambridge-Baker Systems Genomics Initiative |
| Organisation | Baker IDI Heart and Diabetes Institute |
| Country | Australia |
| Sector | Academic/University |
| PI Contribution | Contributions include expertise and input from my research team to identify and explore the opportunities for joint research collaboration to 1) meet the next generation of challenges in cardiometabolic disease screening and prevent 2) identification and characterisation of drug targets through multi-omic analysis 3) development of transformational analytic methods that will drive the subsequent research epoch. My group will provide data analysis capacity and training resources to the Baker institute. In the first five year of this collaboration (2018 - 2023), we have provided 50% of employment costs of Prof Inouye, 1 FTE Postdoc position, able to supervise PhD students;, $30,00pa travel support, accommodation and IT facilities for the CBSGI. The collaboration has been extended until 2030, and for the period between 2023 and 2030 we are contributing a total of AUS$4.1million towards salary for professor Inouye and Dr Lambert, a postdoc, admin support and provision of supercomputing. |
| Collaborator Contribution | The Baker Node will provide access to datasets, and other intellectual resources. For the first five year of this collaboration (2018 - 2023) the Baker Node provided 50% of the employment costs of Prof Inouye, 3 x 1FTE postdoc positions, travel support ($30,000 pa), accommodation and IT facilities for the CBSGI, access grant funding to expand capacity. For the extension (2023 - 2030) Baker is contributing a total of AUS$4million towards research staff, allocation from the bioinformatics programme for inter partnership internships for research staff and students, travel costs, and priority access to target validation platform. |
| Impact | Publications: https://doi.org/10.1371/journal.pgen.1007607 https://doi.org/10.1016/j.jacc.2018.07.079 10.7554/eLife.35856 https://doi.org/10.1161/CIRCGEN.118.002234 https://doi.org/10.1093/nar/gky780 https://doi.org/10.1016/j.chom.2018.08.005 https://doi.org/10.1038/s41588-018-0117-9 Committees: Cambridge Baker Experimental Working Group Target validate of in silico discoveries University of Cambridge / Baker Institute Selection Committee: MRC PhD studentships in Data Science / Artificial Intelligence University of Cambridge Symposiums/seminars - Health Data Research UK: Cambridge, Polygenic risk scores and multiple -omics, Cambridge - Alfred Grand Rounds, Genomic risk and precision medicine: Or how I learned to stop worrying and love computational biology, Melbourne - Million Veterans Project Retreat, Integrative omics analysis, Downing College, Cambridge |
| Start Year | 2018 |
| Description | Wellcome Sanger and HDRUK Cambridge |
| Organisation | The Wellcome Trust Sanger Institute |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | The Human Genetics Department at the Wellcome Sanger Institute has recently proposed to enhance collaboration with HDR UK Cambridge through funding up to three post-doctoral fellows to enhance major synergies between the research endeavours of these groups. The fellows will be jointly supervised by the Sanger Institute and HDR UK faculty. |
| Collaborator Contribution | funding 3 Post doc Fellows, expertise |
| Impact | NA |
| Start Year | 2023 |
| Description | eCamCVD |
| Organisation | Cambridge University Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | I am the Chief Investigator |
| Collaborator Contribution | Contributing Scientific expertise |
| Impact | Not yet |
| Start Year | 2023 |
| Description | BCI Article/Blog - HDRUK North |
| 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 | Blog published on BCS, Chartered Institute for IT website by HDRUK North Clinical Data Officer role on role of data throughout the pandemic |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.bcs.org/articles-opinion-and-research/cancer-covid-19-and-how-data-saves-lives/ |
| Description | HDR UK Cambridge Seminar Series |
| 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 | Project team organise monthly seminar series (in hybrid format), with domain-leading experts presenting across a range of interconnected disciplines, including machine learning, wearable devices, hospital data, genetics for therapeutic target identification. Main goals are to foster new nation wide collaborations and exchange an existing knowledge. Speakers have included representatives of other HDR UK regions and programmes (e.g. Jonathan Sterne, Reecha Sofat) and representatives of biotechnology/pharmaceutical companies (e.g. Peter Wurtz from Nightingale Health). Seminars have fostered new collaborations with HDR UK Cambridge researchers and invited speakers from other regions, for example with Professor Aiden Doherty around wearable devices. |
| Year(s) Of Engagement Activity | 2022,2023,2024 |
| Description | HDR UK Midlands Launch Event |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Regional Launch Event: Held in Birmingham 4th July 2023. 69 People attended from across the Region. Presentations from 3 regional NIHR Biomedical Research Centres (Birmingham, Leicester, Nottingham). Presentations from the 2 regional Secure Data Environments (SDEs) (East and West Midlands SDEs). |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK North & Trials Methodology Research Partnership (TMRP) Patient-Reported Outcomes (PROs) Workshop |
| 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 | online workshop which was held to discuss what needs to be done to make patient-reported outcomes part of routinely collected health data. Researchers and patient/public in attendance. The aims of the workshop were to consider how PROs could be embedded into routine care to improve care and research. Highlight key areas in the field and identify opportunities and challenges to feed future |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Wales delivery of PRIMORANT webinar |
| 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 | Delivery of PRIMORANT webinar to Trials Methodology Research Partnership in Oct 2023 https://www.tmn.ac.uk/events/tmrp-webinar-how-can-trial-teams-build-public-trust-for-the-use-of-routine-data |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDRUK Midlands Chief Clinical Information Officers' Network |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | The Midlands Chief Clinical Information Officers' Network is a regional community of CCIOs from NHS organisations across the East and West Midlands regions of the UK. 60 members from 52 organisations. 3 monthly network meetings held within period. Presentations from 2x CCIOs, the two regional Imaging Networks (NHS England), and presentations and discussion with our 2 regional NHS England Secure Data Environments (SDEs). |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdrmidlands.org.uk/ccio-network/ |
| Description | HDRUK Midlands Training Sessions/Workshops |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | Training courses have trained 49 people trained via 7 events organised by HDR UK Midlands. Monthly Science Meeting: 5 Monthly Data Grand Round meetings held (science sharing webinars). 208 participants attended. Insight Sharing: 1st Quarterly insight Sharing Webinar held (17th October 23). 272 participants joined from across the globe. Topic: Health Inequalities and Diversity in Health Data Science. Presentations included talks from our Early Career Researchers (ECRs), and HDR UK Black Internship Programme. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdrmidlands.org.uk/past-events/ |
| Description | HDRUK North - Better Care Insights Sharing Day |
| 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 | HDR UK Midlands led this event as the national Better Care lead and HDR UK North provided a showcase on the following projects: Su] 'Digital Care Homes' project, ]] 'Better-antibiotic prescribing for frail elderly people' project and 'optimising anticholinergic medication prescribing' project. HDRUK North co lead attended and presented on the HDRUK Medicines in Acute and Chronic Care Driver Programme. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDRUK North led TRE/SDE survey |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | HDRUK North developed live online survey open to gather information to enable us to catalogue TREs, SDEs and FDPs across the North of England. This exercise will link into HDR UK's Pillar 1 infrastructure programme and facilitate data sharing across multiple systems for regional and national gain. It is anticipated that this work will reach completion in May 2024 which is a 3-month extension to our original timeline. Once this work is complete it will give us a much clearer picture of the health data assets held in the North, it will be shared widely and will open opportunities for engagement with these platforms. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDRUK Oxford Data Science Training Sessions |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | HDRUK Oxford leads delivery of scientific training in health data science. The first two sessions scheduled this term, focus on accessing and use of Clinical Practice Research Datalink data. We have also arranged a termly 'Medical statistics drop in session' and regular informal meetings for data engineers in aimed at building a community for people working in the space between data generation and analysis |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDRUK Oxford seminar series |
| 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 | 10 seminars and events held in total between October and December 2023 attracting attendees from more than 17 departments across the University. Events providing insight into industry have been of particularly high interest. Events included 'Leadership in the life sciences'. We also held a seminar from DeepMind on 'Accurate proteome-wide missense variant effect prediction with AlphaMissense'. Both events were fully subscribed with >100 attendees. Other events include seminars as part of the regular BDI 'Genomics' and 'Phenome' series that include both internal and external speakers. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDRUK Scotland Quarterly Meetings |
| 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 | Quarterly HDRUK Scotland meetings that bring together the relevant stakeholders and HDRUK leadership across HDRUK Scotland. Recent meetings have included DARE UK Project presentations and Research Data Scotland updates |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDRUK South West Training and capacity building in health data research in SW region |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | South West Analytics and Infrastructure in Healthcare (SWAIH) was held in Exeter in July 2023. The event was attended by 142 participants from over 40 NHS and academic organisations across the South West. The organisation of a second SWAIH event, held in Exeter on 9th July 2024, is underway. Plan to map relevant health data science training courses across South West academic Institutes underway. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://sites.google.com/nihr.ac.uk/swaih/home |
| Description | HDRUK Wales article in the Conversation |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Article published in The Conversation magazine: Linking police and healthcare data could help better identify domestic abuse - new research https://theconversation.com/linking-police-and-healthcare-data-could-help-better-identify-domestic-abuse-new-research-208986 |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDRUK Wales delivery of TOPCAT webinar |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other audiences |
| Results and Impact | Presentation of TOP-CAT (name of Cardiff-led component of HDRUK Transforming Data for Trials workstream to Treialon Cymru webinar July 2023 |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDRUK Wales presentation at Our Future Health |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation given at Our Future Health Science and Strategy Day |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDRUK Wales presentation to Violence and Society Centre |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation given for the Violence and Society Centre (UK wide organisation) on following project: insights from linking police domestic abuse data and health data in South Wales, UK: a linked routine data analysis using decision tree classification |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.thelancet.com/journals/lanpub/article/PIIS2468-2667(23)00126-3/fulltext |
| Description | Human Genetics Retreat |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Reviewing collaboration, innovation and leadership activities of Human Genetics Group |
| Year(s) Of Engagement Activity | 2023 |
| Description | Is "Winter pressure" on urgent and emergency care now seen all year? |
| 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 informed readers and scientists on how Winter pressures are currently manifesting in features of ED attendances and acute hospital admissions. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Media engagement around the environmental impacts of computing, Loic Lannelongue |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Media coverage in the Times Higher Education, Physics World and other newspapapers. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://physicsworld.com/a/researchers-issue-warning-over-the-increasing-carbon-footprint-of-computa... |
| Description | Media engagement around the environmental impacts of computing, Loic Lannelongue |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | interview with BBC radio/The Naked Scientists in January 2023 and June 2023 (recorded and broadcasted live and also released as a podcast). Media coverage in the Times Higher Education, Physics World and other newspapapers. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.thenakedscientists.com/articles/interviews/calculating-computers-carbon-footprint |
| Description | Researcher Data Access Service workshop (HDRUK Scotland) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | Researcher Access Service Workshop held with HDR UK Scotland and Research Data Scotland (RDS) to discuss the new researcher access service for the Scottish National Data Safe Haven. This workshop provided an introduction to RDS and will focus on the Researcher Access Service which will launch early 2024 with initial health datasets. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.researchdata.scot/our-work/current-projects/researcher-access-service/ |